Dec 1 8am - just a reminder about two things

fyi - H is often aware of what is going on around her(e.g., can understand conversations taking place), though she appears out of it ... with new meds, who knows if this will continue, but it may, especially if it is only Ativan(sp?) ... morphine, probably not, but not sure

also, H seemed to enjoy (at times) the music that was played on cassette player in her bedroom ... one difficult night for her, I asked "want me to turn music off" she emphatically (for her) said "no, leave it on" ... be sure to play it (if you choose to) at low volume as her hearing is just fine.

Mom's Geriatric Assessment

The following information was provided in a conversation today with Kathy Greene, our geriatric care manager (did I mention she is great and a Godsend. Thanks again, Eileen, for finding her!)

Kathy talked to the Powdersville Rescue Squad (PRS), who provide stretcher transport (sounds like a long way off but is the one Kathy recommends. We can always change if we don’t like them for some reason.) They say Mom would definitely be eligible for Medicare-funded transport to each of her doctor’s visits. I will be calling them tomorrow to arrange for that service for Mom’s appointment on Thursday. PRS will fax Certificate of Medical Necessity to Dr. Pugh’s office; he will sign and return to PRS (I’ll also be calling Tracey to alert her).

That’s all there is to it. Form will have to be processed, though, each time Mom has the need to be transported but will cover ALL of her Dr appts. There will no longer be a need for the local people to take Mom to her appts. (24-hour notice is required; emergency trips would still be family trips, or a 911 call.)

Kathy is sending me her proposed Care Plan as well as information on a Do Not Resuscitate (DNR) order, which I will send on to all of you. (Problems with email are slowing us down.) Discussed both Hospice and DNR with Kathy. According to her, both are “calls” that a doctor would have to make and “order”/suggest based on her/his assessment of Mom’s condition. I’ll be discussing both with the Dr. Shalley on Thursday to confirm. Again according to Kathy, in the case of Hospice, Mom’s current med regimen would likely continue “as is” with no add’l “heroic” measures/meds being taken to prolong her life. The doctor would also have to feel fairly certain that Mom had less than 6 months to live to qualify Mom for Hospice. Hospice care would mean nurses coming in several times a week and an Aide to assist with bathing. (All-in-all, pretty much the same thing she has now.) Mom would not be eligible for a Hospice facility until she was in her very final days, with only a couple of weeks to live.

I’m hoping to put a list together tomorrow of all the questions we’ll want to have covered on Thursday. I’ll pass around so you can add any add’l thoughts you might have. Hoping they can give me some indication of where we are on Thursday but we’ll probably have to wait until all the tests come back to understand the whole picture. It is my understanding that the entire package of results will be going to Pugh also.

COVERED FOR WEEKEND CARE

Visiting Angels called me back and has arranged for full weekend coverage (8am Saturday to 8pm Sunday) to be provided by their weekend person - Nancy Webb.

Since it is Vic's weekend, I'm thinking that we go ahead, see how it goes and let Vic monitor, i.e., arrive on Saturday and leave on Sunday when he is comfortable.

Any comments?

Monday Nov 26 4:30pm

Interim nurse here today, skin tears are healing well. she mentioned that as long as interim is visiting, then Medicare will also pay for someone to come in and bathe H if that service is desired ...

H very quiet today after a very quiet night ... Ambien was given last night ...
Morris was over today, but left after seeing that H was totally asleep.

Carolina Homecare delivered new sling for mech lift.

Asked Maggie about others who may be interested in caregiving in our open slots - Sat day,night, Sun day ... she doesn't know anyone right now, will let us know if she hears of someone.

WEEKEND CARE

I am taking steps today to attempt to find qualified personnel to come in from Saturday a.m. to Sunday at 8:00pm which I believe are the open times. I don't have any magic answers, or people waiting in the wings. Gwen is only available for the Sunday night time slot and for no other weekend time (even though she has been begging me for more hours). I know I am in charge of the "schedule" but to me that always meant completing it and sending it out. I need all the help I can get in arranging additional outside care. If anyone has any ideas, or thoughts, let's discuss. Of course, we'll go to Visiting Angels first.

Tom - You mention in your post that you were going out to "get" some help. Have you made any progress? I know that your weekend is coming up very quickly here.

sunday nov 25 3:30pm

managing ok on my own Sat and Sun ... Maggie is back on Monday ...
after a quiet Sat day, Sat night was non-stop moaning ... only two stretches of about 10min each did H get some sleep ... I sat in the room with her as much as I could, as she did ask me to do that ... some of my probing yielded a response that it is her head that hurts, like a headache. She requested water over and over. Tylenol does not appear to provide any relief.
Morris came over today, was shocked/saddened (my interpretation of his body language) by what he saw/heard ... he will be back Monday ...
I canceled Sunday's communion visit by Jackie Smith, anticipating a rough day due to the prior night.
Food intake volume is really light ...
She is very aware of surroundings, made a comment on a news story that was on tv at the time, said to me "I have to stop making noise" during the non-stop moaning ... Sometimes the moaning seems like a mantra to distract from thinking about her situation and not really a response to physical pain (although I am sure that is always present)...
H, sitting in tv room in w-chair, commented that it was difficult to breathe, but did not want to go to bedroom and bed (where lie-down position might make that easier).
Gwen has agreed to do Sunday night as part of her regular schedule, cannot take on Friday night or Sat-day or Sun-day.
I will ask Maggie about making Friday a regular night on her schedule.
This is the start of the activity to get 24x7 outside caregiving arranged, to relieve kids of hard requirement to be present at 14 Ivanhoe in role as caregiver. Weekend schedule for kids will still be maintained as supervision and monitoring needs to take place and at least some drop-in time to observe in person.
Once thie 24x7 caregivers are on board, the kids can concentrate on the other things that need to be done.
This plan came about very recently - Eileen and I chatted on Fri/Sat(?) and discussed.
Paying for the outside care will be done using existing HELOC as much as possible. when/if that runs out, take MK/Bob up on offer to fund with additional mortgage-type financing (that is my understanding of MK/Bob offer, obtained 2nd hand via Eileen's blog post, if not correct, I apologize).
that's all for now ...

Friday Nov 23 ... 10:45

Interim nurse (Luann) here today ... all is well ... two skin tears are healing nicely ... pressure sore on backside is healed ... no dressing or bandaging needed ... pressure sore on foot is healing ... lung examination (stethoscope, upper and lower) shows no pneumonia signs ...

all is quiet so far today, i.e., no moaning/callingOut ... H is in wheelchair, in kitchen, watching tv.

I plan to work with Maggie today to improve my lifting abilities, it's not the weight so much as knowing how to leverage and avoiding back injury, still think it is doable for this weekend and perhaps December if H's condition does not worsen much ...

Gwen's pending purchase of hospital gowns will make dressing go a little easier ...

just wondering if anyone knows about the following:
Washer issue: the hot setting on the washer, which I guess is set to pull only from the hot water line, has changed since I was here in Sept. At this setting, it fills extremely slowly ... unusable, really ... after 1 hour this morning, the washer was only 1/2-way full ... Maggie fooled with the cut-off valve, didn't do any good ... the warm setting is working fine.

Thurs 11/22 11:30pm

Maggie here in the morning to get things set up for me for the day.
H spent the day in her bed, only occaisional calling out.

played music (kitaro) on cassette tape, got indication from H that she enjoys it.

I have the feeling that H will be happy to see Maggie tomorrow with a new appreciation of how skilled she is after experiencing my (awkward) handling all day today.

Thursday 11/22 6:30am

currently, all is quiet, H is sleeping ... Gwen is here for the overnight, the evening begin with the calling out, but then that stopped ... the stronger dose Ambien was given around 9pm last night ...

earlier in the evening, when Pam was here, H had been calling out constantly, and me being new to all of this, was working to find a way to distract or figure out what was wrong or something ... Pam was right there working along with me and our conversation turned to "there is nothing we can really do to soothe H and there is nothing we can really do to make her more comfortable " ... that's when H came up with " my but hurts" ... this comment was so different from the running "I have to stand up" or "I have to get out of here" or moaning, that Pam and I took notice of it, moved H to her chair. H had about an hour and a half of quiet time ... sitting quietly, fooling with her hair, nose ... it was wonderful to see her so calm ... Pam said her good-byes, H told her that her mother said that she cannot leave ... our conclusion is that maybe this time, there was discomfort in H's wheel-chair position that was relieved by relocating to the chair, but, can never be sure ...

the moaning/calling out began shortly before Gwen arrived (she was a little late), and grew very,very heated ... Gwen reported that H struck unexpectedly with her hand at the applesauce/med concoction she was being fed and it flew all over ... that was a first for Gwen ...

Maggie is coming in today, as I am not up to the giving the care required this time around - mostly the lifting ... I spent yesterday (my arrival day) learning from Maggie how to lift, transfer H ... I have a long way to go to be able to do it safely for H. I intend to practice some more, but it may turn out that I am no longer able to serve as a caregiver ... I hope that this is not the case, and intend to work with Maggie et al. to learn the craft for the time that I am here.

all for now ... thx.

Wed 11/21 4:30pm

1) Interim nurse (Luanne Baker, RN, BSN) was here, she's back on Friday. She tended the newest skin tear (happened last night when Pam on duty). Skin tear is major, was definitely not spontaneous, could have occurred by some bumping unnoticed by Pam as skin is so fragile. The bleeding did not look like it was going to stop (looks ok now, though) Luanne applied special compound, dressed tightly with gauze, says to monitor bleeding, call Interim off-hrs if it does not stop. She examined the earlier skin tear, it is healing well. She examined the bed-sore on left foot, it is healing well.
2) Speech therapist was here, no speech problem, no swallowing problem. she will not be returning unless loss of skill occurs and is filed thru Pugh/medProfessional ... e.g., cannot swallow at all. Currently, swallowing is fine, since Ensure, water, chopped-up-meds-in-applesauce are all going down ... getting her back to swallowing whole meds is not considered as eligible for her services. fyi ... this lady was a doll ... basically conversed with H for about 1/2 hour before remarking that she was puzzled by submission of diagnosis code (for speech problem) since speech was so good ... that is when she discovered that she was supposed to be there for swallowing and not for speech ... after that, lots of questions about solid/liquid intake and then the drill on whole-meds problem is not considered a skill loss. fyi, one comment was about H's mouthful of her very own teeth ... you know how proud H is of this, I could feel her glow across the kitchen ...
3) interesting pattern observed by nurse and Maggie: H's hollering is amplified and more dramatic if there is a kid present ... e.g., nurse remarked that on Monday (her first visit), H was very quiet, no complaining, even tho she was doing basically same as today when there was much vocalizing. Maggie confirms that she has noticed such a pattern.

FIRTHER CLARIFICATION

To further answer the question "are we ready" to move Mom, here are my further thoughts:

Yes. We are as ready as we can be. I am recommending The Cottages as a first choice and Brighton Gardens as a second choice for the following reasons:

The Cottages is a SNF with Medicaid potential but has the look/feel of assisted living. It is near enough such that we would be able to visit at will.

Brighton Gardens is also near, but I don't recall about its Medicaid potential. If it does not have it, there are plenty around who do. We'd have to do a little more research - and I'm only talking taking a look at the facility and having a short conversation.

Private pay costs are comparable accross the board.

Next steps would be to find an open bed and engage the facility. This will take the effort of local people. No way around that.

How to pay? We can do any of the following:

• Use Mom's Home Equity Line - I believe in other posts Mary Kay has indicated that there is what seems to be a large HE line (I could be misinterpreting - this may just be an estimate on remaining equity in general)
• Take Mary Kay and Bob up on their offer to finance with additional notes on the existing mortgage
• Sell the house to pay off outstanding notes, cancel the Kelley mortgage and spend down
• Move to Medicaid bed when spend down complete

I think once we are talking about moving mom out of the home, the reverse mortgage comes off the table as this alternative is to keep invididuals IN their homes for as long as they live, which of course is the exact opposite of what we would be doing so hard to swing.

CLARIFICATION

I just want to make it clear that the evaluation on the 29th is not with a geriatric nurse or even the care manager, but with the Center for Success in Aging. I believe they may be an avenue into The Cottages at Brushy Creek - which woud be my first choice of skilled nursing facility for Mom. They are located in the same complex. This is the one where there is the long waiting list but if you say the right words, you can move up the line.

I hear and understand the deeply negative tones of your messages. Circumstances are dire and they seem to have come up on us very, very quickly which no one could have foreseen. To me the question is:

Do we move her and spend the money or do we hire help, keep her at home and spend the money? I for one would like some professional guidance which I think we will get from our care manager and the geriatric team of physicians who will evaluate. Who knows, maybe this team will come up with a "she can't last much longer like this" and we can get Hospice involved.

As far as taking anyone off the list, I can't do it until we have another plan in place and have identified who will fill in the slots. What are your thoughts?

Weekend update & more

I agree with Tom. Mom is physically at a point where we cannot properly care for her. I personally cannot do what is required so please remove me from the weekend duty roster. I'll take care of the grocery shopping, medicine runs, house and cars repairs or service, whatever. Or, as Tom has suggested, I'll do my duty weekend along with hired help if the "family" decides to keep her at 14 Ivanhoe. However, I don't think that is the best answer.

Frankly speaking, we are not serving Mom well. She is in pain and discomfort. She is weak and fragile. She is immobile. We do not have the skill or resources to adequately serve her needs at 14 Ivanhoe. Mom needs to be moved into a nursing home where the resources are located to tend to her needs now. We've done the best we could do.

I don't need a geriatric nurse to tell me what Mom's status is. I've lived it for three years. I know what her status is. We all know what her status is. As hard as it is to commit Mom to a nursing home, it's the best we can do for her at this point in time.

I spent Saturday and Sunday with Mom and it was the same as everyone has experienced - constant moaning and calling out for help - not just at night now but during the day. She can't feed herself. She can't clean herself. She can't stand on her own two legs. Her body is contorted and her legs have atrophied. The skin on her legs are spontaneously tearing with greater frequency. I was just there tonight after receiving a call from Maggie that Pam was in a panic due to a new skin tear - larger than the first one but not as deep. Tom and I just took Mom to the eye doctor today because her right eye was extremely distressed, getting worse over the weekend. Again, we have another staph infection. These complications will only compound. The right decision is to move Mom to a nursing home as quickly as possible. Are we prepared? Are we preparing?

I have said from day 1 of this journey that the right thing to do was to keep Mom at home as long as we can but when she reached a point physically or mentally that was beyond our ability to adequately care for her then it would be time to move her to a nursing home. It's the right thing to do for her no matter how much we or her dislike the choice.

Dan

Weekend with Mom

The weekend with Mom was for the most part, uneventful. Her condition continues to get worse. Very weak. Can't do anything on her own. She asked for a piece of candy and couldn't put it to her mouth. I had to feed it to her. Doesn't talk much. Moans a lot. Most of us have heard the moaning.

As far as the meeting on the 29th- won't be there. It has been my opinion that she needs a more specialized care than I/we can provide. I don't have the capability to provide the proper care that she needs. I believe thats what the geriatric nurse is going to say. We either get her in a nursing home or bring in 24 hour nursing care. Either way its going to be expensive. I will be back on weekend duty in a couple of weeks and will find a cargiver or nurse who will come in and do the chores that are required, like cleaning up Mom after she goes to the bathroom in her depends. I will stay with the schedule as planned.

As far as Morris paying his $500, its about time. He's only 4-5 months past due. I guess that's ok as far as we are concerned.

Tom

CALLING ALL LOCALS

I encourage each and every local - Vic, Tom, Dan - to attend the geriatric evaluation that Kathy Greene was able to secure for us. It will be your chance to have questions answered and to hear first hand from a geriatric specialist what Mom's status is. It is a one-time thing. This is about Mom and how we best care for her. In my opininion, it is very important that we have as many ears and eyes on the appointment as possible, so if you can muster the time and courage, just do it. If I could take the time, I'd be flying down for it. That is how important I think it is.

Mom's Geriatric Evaluation

As you know Mom is scheduled for a comprehensive geriatric evaluation on Thursday, Nov 29 at 1:30 pm. I will be coming to Greenville that morning to take her, leaving that night or the following morning.

Talked to Kathy Greene, our geriatric care manager who helped us get this appointment, this morning. She confirmed what we already knew about the wheelchair transport service - not covered by Medicare. Mom would be eligible, however, for stretcher transport if it is determined to be a "medical necessity" for her. According to Kathy, with Mom's significant mobility issues, including impact of skin tears, etc., the doctors evaluating her next week might agree to give her a "Certification for Medical Necessity" form which would qualify her for stretcher transportation for all medical visits, including to Pugh, Ballinger, etc. This is something we'll be shooting for.

In prep for the evaluation I'm completely the usual "first visit" forms. I thought it might be a good idea to include our own list of questions we'd like to have answered by the doctors, that I would attach as a cover letter to their package. Please provide any questions you'd like to have answered and I'll include in the cover. I'll be sending out tomorrow morning so please let me know as soon as you can.

Bob and I are leaving Atlanta tomorrow at 11:00 am returning next Monday evening. Always available via cell: (404)275-9070 and (404)375-4966 or leave a message on our home machine.

Thanks.

MAGGIE'S TICKET

Does anyone have an issue with my giving Maggie your NON WORK e-mail address? She likes having mine and is communicating nicely with me via e-mail. She also wants to send out a Thank You for the airfare for her trip in December. She is very greatful (as my English 101 Students used to right).....and as she says "blessed."

She also is having fun with e-mail during the day and practicing with it. Sends a lot of jokes. Some of them very funny and risque. It's cute.

Eileen

Another Update

Have been talking to Maggie this week checking up on the situation. Mom continues to have trouble staying asleep all night but things have gotten a bit better.

Patient Lift: Mom is unable to really stand which has made it harder for the caregivers to transition her and help her with toileting. Maggie suggested we get a Hoyer lift to get Mom out of bed, onto the commode and into the wheelchair. This is a pad/canvas sling that goes under the patient and is attached to an hydraulic lift. The pad has a separation that will allow for commode use. Maggie has used before and says that patients usually take to it very easily. I called Carolina Medical, who contacted Pugh’s office for the “order” and I believe they are delivering it today. We will only use it if we have to. There may be times or days that it won’t be needed. (Covered by Medicare)

Wheelchair: While we were at it and discussing other issues, we ordered a new, lighter weight wheelchair that also has leg lifts so that Mom can stretch out and elevate her legs while she’s in the chair during the day. If we don’t like it, we can always return it and just get leg lifts to attach to her current chair. We thought the lighter chair might make it easier to get her down the stairs. (Covered by Medicare)

Hospital Gowns, etc: With less and less activity, Mom is getting more and more stiff making it difficult to change her clothes, etc. Maggie and Gwen recommended hospital gowns for her day-to-day dress. Gwen says Hamrick’s has a very nice selection and will pick several up on her way home or on the weekend (5 X $20). I’ll be sending her a $100 cash card for these this afternoon. I’m also going to send Maggie a $100 cash card for a couple of other items – sheepskin booties that are used to help prevent bedsores on Mom’s feet and a bedpan that Maggie seems to think we could be using shortly, and any other incidentals that she can pick up on the weekends in the future.

Other medical stuff: The visiting nurse was scheduled to come yesterday to change Mom’s dressings. Mom legs are a bit swollen and she has an additional (although very small) tear on her leg. Her right eye is still red, although the left eye which we had a problem with last week is still looking OK. Maggie is using the meds for the right eye that we’ve been using all along. The nurse has also requested a speech therapist to evaluate Mom’s swallowing mechanism – don’t know when she/he is coming. Mom also might have a slight sinus infection (green runny nose) that the nurse should have evaluated yesterday. Lastly, I’m following up with Pugh’s office for the liquid potassium later today.

P.S. Not sure I mentioned in earlier blogs that Morris is now giving us $500/month. Rec’d his first check last week.

Weekend update

Mom is physically weaker and less agile than she was 2 weeks ago. Her ability to stand is almost gone - even Maggie had trouble on Monday - making it very difficult for transitions and toileting. I'm not sure I could have managed with Bob. Luckily she likes sitting in the wheelchair with the special pad, which is easy to move around the house. She was not in her recliner all weekend.

Mom continues to have problems with pill-taking, particularly the potassium. I'm going to ask Dr. Pugh for a prescription for the liquid form - supposedly tastes very bad but at least she can get the amount she needs. I'm concerned that she will have another foot cramp if her potassium gets too low.

Maggie used the same ointment we had for the right eye for her left. Eye infection in her left eye is gone/almost gone. Her right eye looks slightly red but not bad. She continues with the fingers in the nose and eyes, very dirty nails, likely passing this infection back and forth. I cut her fingernails very, very short and cleaned them up. Asked Maggie to do the same but if she gets behind you might want to give it a try. Cleaner nails and hands might help limit some of these infections.

Last but not least Mom's emotional/sleeping issues. This was a very difficult issue this weekend - all three nights but Sunday night clearly the worst. Seems we have a pattern now. Goes to bed, several minutes later (15 or so) she starts moaning and calling for help, the mantra "somebody help me" or just moaning "oh, oh, oh" over and over again. I couldn't get over how quickly after going to bed she went to this stage; also the strength she has to keep it going and how loud she is. We went in several times between 10:30 and 12:00 and then she slept till 2:00 am. From 2:00 am to noon on Monday, she was in almost a continuous state of calling out and/or moaning - maybe an hour or two of down time. When we or Maggie asked her if she was in pain, she said no. We tried several things, gave her Tylenol, toileted her even though she said she didn't need to go, etc. but nothing worked. She seems to be aware that she's doing this but can't/doesn't want to stop, even to get some sleep. This was the first time we've seen it go on for so long, although Maggie says she had a similar episode last week. On the one hand it seems like a form or stage of dementia, on the other hand Mom seems very much in control of it.

When the visiting nurse arrived at 12:30 yesterday she could hear Mom as soon as she walked in. I asked her to give us any suggestions she might have to help us and to communicate to Dr. Pugh. Spoke to Pam later in the afternoon and Mom was asleep in her wheelchair. We had to leave to get back to Atlanta so I'll ask Tracey when I call today if we should consider any other course. I'm sure you will all experience the same thing and it is very difficult to hear someone in such emotional distress for such a long period of time. Our only consolation was that she was safe and sound in her bed or chair and said she had no pain. Maybe Kathy Green can give us her professional evaluation after her visit on Friday.

Back to the eye issue: Since Mom's left eye was clear and since she had such a bad night, I cancelled the Monday appt with Ballinger. Talked to Paige later and, after her having talked to Ballinger, we're using the same ointment now for both eyes. If either of her eyes get worse, we'll have to take her in.

All for now.

Ambulance Services

Here's the ans. to Eileen's question about stretcher services: Williams Ambulance Svc: $150.00 plus $6/mile after ten miles. (847-9584 or toll free 866-FOR-WEMS). Medshore: $175.00 plus $2/mile. (235-8888). Bowers: $125.00 plus $3/mile. (269-7888). (The wheelchair services won't work. One person is sent with a special van. They can't get her down the stairs.) Transport to a hospital is covered under Medicare. Doctors visits are not covered. Check, cash or credit cards accepted. (And what about Mom's other insurance? Doesn't she have some? Anybody know if amb. svcs are covered?) They file for ins. if the svc is covered. If covered no payment is necessary at the time of transport. Maggie tells me that the next visit, barring any eye doctor marathons, is Dr. Pugh on 12/10. Then the eye doctor on 1/7. Given Mom's condition and time away from work for Tom and Dan, I'd say it's time we consider this. At least we have it as an option.

Furnance

Found a document in Mom's files re: furnace. Action Services (2419-B Wade Hampton Blvd, Greenville 29615 864-292-5600) put in a Quatro (100,000 btu) Upflow Gas Furnace in on Nov 10, 1994 for $2,040. Also notes a 20-year warranty on heat exchanger (whatever that is) on the document.

I asked Maggie to see if there was a document in the furnace room; she found something with a different furnace name but with a 20-year guarantee so don't know if it's the same one (no date on the guarantee). We'll bring a copy of the document we have and check this out this weekend. Hopefully, Mom's furnace is still under some type of guarantee.

In the meantime, can we confirm that we're using the same furnace people that are on the 1994 document? If not, they might not be aware of this guarantee.

Mom's Eye and Kathy Green, Connection One

Since we'll be coming up this weekend, we thought we'd take Mom to the eye doctor. We can't make it by 9:45am tomorrow morning due to rush hour traffic in Atl so I called Dr. Ballinger's office to see if he had another appt time. Talked to Paige, his assistant, who said as long as Mom doesn't have pain in her eye, which she doesn't, we could wait until Monday at 9:00. So that's what we'll do unless Dan or Tom want to take her tomorrow, which is OK with us. If her eye gets a lot worse, or she develops pain, Page said we could call the doctor-on-call and bring her in over the weekend.

Also had an initial assessment call with Kathy Green (2 hours) who will help us get into the UMG Senior Center of Greenville Hospital System for a geriatric evaluation, develop a care plan recommendation and advise us along the way. She was very impressive. She sent me the referral form that the Center requires Dr. Pugh to sign. I put a call into Tracey (Pugh's assist) and sent the form over via fax. I'll let you know if there are any concerns or delays. We are trying to get Mom into an appt on Nov 29 which Kathy had reserved for another client but is now cancelling. No guarantees but we're hoping to benefit from Kathy's influence/contacts here - otherwise there is a several month waiting list.

AMBULANCE TRANSPORT

Vic - A question about the ambulance services you called. Will they enter the house and take Mom out on a stretcher? This is what we need. I'm just looking forward to any need to get Mom to the eye doctor. As Dan states, we are confronting a nightmare if we have to get Mom out of there consistently.

A move downstairs? Should we do it? Does it make sense? Do we go ahead with not only the chair lift but the furnace? Getting a new furnace will require some effort, i.e., shopping for the right one, etc. I don't think it's something we should simply just settle for. But maybe I'm wrong here. Other thoughts?

Let's keep our eye on the ball here so it does not become too burdensome on any one person.

Thanks.

Eye problems

Maggie called me this afternoon to report the left eye is getting red. Gwen will treat the left eye the same as the right eye tonight and Maggie will report how it looks tomorrow. I have a very bad cold that I can't shake and plan to go to the doctor myself tomorrow. I've been sick since last Friday. Tom is riding with his boss tomorrow. After Maggie reports Mom's condition, I'll call the eye doctor seeking treatment advise. If they insist on office visits as they have done in the past (ie, every other day or even once for that matter), we have serious problems.

Dan

Mom's confusion re: where she lives

Maggie called me this afternoon somewhat distressed. Before she could even get into what the problem was I could hear Mom crying out in the background that she "wanted to go home, somebody help me, I don't want to be here". Evidently as Morris was leaving several minutes earlier and told Mom he was going home, Mom launched into a confused discussion about where he was going and why was he leaving her there - she wanted to go home too! This went on for a bit as both Morris and Maggie tried to explain to Mom that she was already home and that Morris was just going to his apartment. Mom wasn't accepting any of that and continued on.

Morris left and then Maggie called me because Mom was still carrying on and she didn't know what to do for her. I got on the phone with Mom and tried to explain that she was already home, which she didn't want to hear from me either. I then tried to get her to describe her "home" to me so that I might be able to tell if she was talking about Pittsburgh, Indianapolis, etc. She was angry, didn't want to talk about it, handed the phone back to Maggie, and continued to call out.

I then suggested to Maggie that she get Mom into her wheelchair and take her to other parts of the house so that she might get her bearings and realize where she was. Believe it or not, it worked. Maggie took her back to her bedroom, combed her hair (which helps calm her down at times) and asked her if she remembered this was her bedroom. "Of course, I do" and then all was well and calm. Maggie then took her back to the kitchen.

Maggie told me that Pam had told her a similar thing had happened last week - Mom not realizing she was home, thinking someone had left her somewhere. Trying to reason with Mom doesn't seem to work; playing along and saying, "OK, let's take you home" and then taking her around the house, etc. seems to work. I mentioned to Maggie she might want to let everyone know that when the time comes to leave, just leave with as little fanfare as possible - not making it a big farewell telling her you're going home.

So two times now within a week - could be a new phase of her dementia. Thought you should all know and not be surprised if it happens to you.

Weekend Update

My weekend was similar to MK's, and I was alarmed at the changes I saw since my last weekend 4?5? weeks ago. Even with one and a half Ambien pills Mom slept very little. She cried out a lot, and every time I went to check nothing seemed to be wrong unless it's the bed sore. She ate very little, and it was hell trying to get her to take her pills. Can we get these meds in liquid form? We tried to crush them up and put them in food, but it was difficult. Since my last visit I noticed a significant change in dexterity. She cannot grasp pills anymore. Sometimes she can with difficulty, but it's slow going and frustrating for her. She can still hold a fork, but with the same slow effort. Also I noticed that she doesn't read anymore. On Sunday Jackie came over and gave a short prayer service with communion, Mom conversed with her, smiled at the jokes, even made some of her own now and again, so she's still active mentally. We watched "The War" dvds and movies on TVand she's perfectly fine talking about them. Four weeks ago she was able to "slow dance" to the bathroom, but she told me very clearly this visit that "she can't go in there." She can hardly stand up. Was this a down cycle? Permanent trend? I guess we''ll see.

Back to the Sleeping Issues for a second

Talked to Maggie this morning. Ambian (at 5 mg - one pill) isn't really giving Mom the relief that she needs. I called Dr. Pugh's office and they recommended giving her two pills (10 mg) to see if that will give her the sleep that she needs. I gave Maggie the info and she will give Mom that dose tonight. We'll see how that goes.

Heating problems

I had to call out a service tech for the heater last week and this week. They replaced the main board last week and the heater worked for a few days then failed again. Maggie called me late Friday (3PM) and I got the service tech out there again but there was nothing they could do until today.

They had to replace the same main board so they think something else is causing the failure so we should expect it to fail again unless it was coincidental that the replacement board also failed. Today they replaced the main board along with the thermostat because it is relatively inexpensive and worth the try. If the main board goes out again, we will need to replace the furnace. The rough cost will be $2700 installed assuming the newer units fit in the existing space.

It will be getting cold here starting tomorrow (low 30's) so we will need to pull the trigger quickly if the furnace needs to be replaced so be sure funds are available in the account. I suggest putting $3-4k in there at all times so that we can quickly handle these sort of issues.

Dan

SCHEDULE NEED

As we all know, Maggie is going to be on vacation from and including December 20 and flying back on January 3. She will be available for work on January 4 per the usual Schedule.

Jane arrives on December 20 at 8:00am which is no problem for any transition since this would be morning that Gwen would be covering. Jane will advise on outside help needs after her Thanksgiving weekend extended stay so we'll address the transition time at a later date.

MORE IMPORTANTLY, HOWEVER, Jane leaves at 10:00pm on WEDNESDAY, JANUARY 2. We'll be OK for the overnight since this is a Gwen night, but we have an issue for THURSDAY January 3 from 8:00am to FRIDAY January 4 at 8:00am.

Any suggestions or volunteers? I'm thinking that PERHAPS someone would have availability since this is a slow week after the holidays typically.

If there is no family member availability, we'll have to schedule a combo of Visiting Angels and possibly Gwen to cover (maybe the overnight?)

Let me know as soon as you can so that we don't this hanging out there as a To Do.

Thanks.

Also, I'm working on the January-February-March schedule. Please advise if you know of any times or dates you will be or will not be available, if you already know them.

Thanks again.

Eileen

Sleeping Issues

Talked to Tracey at Dr. Pugh's office and explained Mom's difficulties re: sleeping.

She looked at the list of meds she had on file for Mom and thought that she already had Ambien but I explained that that was discontinued a while ago (I'm not sure when or what the circumstances were). She will be talking to Pugh but felt that he would surely prescribe Ambien again. I suggested that they prescribe the lowest dose possible and that we increase it if the lower dose doesn't do the trick. We'll likely start with 5 mg and then go to 7.5 mg, or 10 if that doesn't work (not sure what she was on the last time or what the negative impacts were). Tracey says that Mom has the signs for Alzheimer's/dementia - mixing days and nights and calling out for help during the night. This sleep med should help her get into a better cycle. Also, I asked Maggie to start keeping track of Mom's sleep patterns - when to bed, when to rise, how the day went, how the night went, etc. - so that we can give Pugh good feedback in a week or so re: Ambien.


I'm waiting for Tracey to call me back to confirm that they've called the prescription into BiLo.

PS: Mom now has two air mattresses - one for her bed and one for her wheelchair. Maggie says she's been sitting in the wheelchair a good part of the day in the living room or in the kitchen watching TV - awake, and not complaining, most of the day. She has been very resistant to sitting in the living room for a while so this is a good development - a nice change of scenery.

Last Weekend Update

Don't feel I really need to go into a lot of detail since we experienced very much of the same as others have described. BP is low 90's, which I think is OK but lower than she has been recently. Mom is very weak and looks like she's lost a lot of weight since the last time we saw her (she's too weak to stand so she hasn't been weighed for several weeks). She drinks several glasses of juice, water, coke, etc. but only eats a bite or two of sandwich. We bought some Ensure to bolster her nutrition somewhat and she seems to like that somewhat.

Transitioning her from bed to commode to chair, etc. is doable but difficult. Lucky for me, Bob did most of those transitions; I'm not sure I could have managed, at least not very easily. Once she's out in the kitchen and doing her thing everything went very smoothly - it's really the transitions and the toileting that are challenging. With a little more "training" I would probably get a lot better at it (per Maggie, who seems to manage fine.) The Interim physical therapist suggested a special belt that she will provide that Mom would wear and give the caregivers something to hold on to other than Mom's arms, etc. (trial basis only).

Two problems we encountered - taking pills and sleeping. It was very difficult to get Mom to take her pills even though she has always been a very good "pill-taker". It was an all-day affair rather than 4 times a day. If you're not careful, she'll hold them in her mouth and spit them into a tissue when you're not looking. When Lisa was there on Friday we discussed the potassium pills, which are the largest and most difficult pills to swallow whole (though the antibiotic is also difficult). Lisa said a symptom of low potassium is leg cramps. Saturday morning Mom woke with a very bad foot cramp. Concerned that it might have other implications, we called Pugh's office and talked to the doctor on call who suggested cutting the potassium pills into 4, which we did. Also, recommended giving her quinine, which is found in tonic water, which we did. So far, she seems to be taking the potassium and likes the tonic water with OJ and no recurrence of leg/foot cramps.

First two nights Mom slept all night, almost 12 hours each night. We had given her the Lortab and attributed her sleeping to that. Sunday night we did the same but she was awake most of the night. Per Maggie, she slept Monday night but last night Gwen said she was up all night. For those who haven't experienced it, Mom calls out for help continuously (like a mantra, "help me, help me, somebody help me") but doesn't seem to be in pain or need anything when we go in to check on her. At times she seems to be half asleep and not totally conscious of what she's doing - but keeps calling out. At one point we let her continue to see if she would tire herself out and go to sleep but she didn't. She can go on for hours. While she can sleep in the chair the next day, she's probably not getting good sleep. Even after the two nights of 12 hours of sleep a night, Mom still sleeps most of the day even when we try to engage her with something to keep her awake. The Lortab prescription is not renewable and will soon run out. I know there are some downsides, but we could consider asking Pugh for an actual sleep medication so that both Mom and the caregivers can get a good night's sleep.

I think that's it but let me know if you have any questions.

Oct 31 2007

v good info on transport ... big pricing discrepancy ...

Note on blog settings: I unknowingly disabled comments when updating blog settings, as in no comment-capability on Vic's post ... should be back now ... also changed settings so now comments open in new window ...

Transportation

Eileen, thanks for all the work you did while you were down here. Sounds like you guys got a tremendous amount done. I'm going to visit the Brushy Creek place if I get a chance. Rose is going to join me Sat. afternoon so I may be able to get there. For what it's worth, I looked up some ambulance services in Greenville. If it helps Tom, Dan and the caregivers here's the info: Bowers Emrg. Svcs 269-7888, $125.00 plus $3/mile. round trip. Medshore Amb. Svcs. 235-8888, $30,one way and $2/mile. There's a Kadi Med. Svc, but they haven't responded to my request yet. Mom needs to be in a wheel chair for transport and Maggie can go in the ambulance with them, but they have to know if she's going in advance. If Mom is non-abulatory they'll put her on a stretcher. Both companies need at least 24 hrs notice, and payment is due when services are rendered. Bowers said they would file for ins and refund the fees if they got paid. They don't stay while Mom is at the doctor, but come back to get her when called, so there would be some waiting time involved. I have no idea if insurance would pay. At any rate it might help with the "heavy lifting" and time away from work for doctor visits.

ASSISTED LIVING vs NURSING HOME vs HOME CARE

We need to discuss these alternatives with the Social Worker. While I agree there is a big difference between Morris and Mom in terms of Assisted Living, there is also a wide-range of Assisted Living facilities and tolerance levels for ADL (Activities of Daily Living) support. Not everyone in AL is as capable as Morris by any means. Morris and the people at Westminster are truly independent. This is not what you see at other AL facilities necessarily - and this is why the Nurse and maybe even the SW will be non-committal in terms of where Mom should go. It is the word "probably" that is the key word for me. Why is there no certainty around th is? What are the gray areas?

Also, perhaps if we could simply improve her transfer capability we would be on better ground to qualify her for AL in general. We could get her into The Havens relatively quickly, but there is no attached SNF. So another conundrum.

For the moment, we have to continue with Home Care, so I'd like to question both the SW and PT on how best to continue. Here is what I would ask:

a. What are we NOT doing that we should be doing? Can anyone explain why the walking ability just left so catostrophically? It seemed like it was overnight. Is there any way to get that back?

b. How would one go about evaluating just how Memory Impaired Mom is? Do we have a diagnosis on this? Is she truly impaired or is she merely exhibiting normal behaviour for an 82 year old? What impact would this have on an AL facility evaluation?

c. What other resources are there for assistance with improving her physical ability?

d. Is she losing her ability to swallow and is that why she is having difficulty in taking the meds?

e. Why is everyone non-committal about her qualification for AL? If it is not black and white, then there must be an AL facility out there that she would qualify for, right? There appears to be varying tolerance levels at AL facilities for additional care.

f. How does one prepare her for a "move" if this does not play out like we want it to, i.e., that she would be totally unaware of her surroundings or have a medical condition that would require hospitalization, then a move, etc. Would the SW help guide the conversation?

g. How is the best way to complete the application for The Cottages at Brushy Creek so that she can move up the waiting list? What conditions would need to be present to convince a table of Social Workers that Mom would be a viable candiate for the help they provide? (See prior posts. This is the facility with a 60 person waiting list that is a Skilled Nursing Facility that has the look, feel and operation of an Assisted Living Facility. It is THE place for Mom when we are done with Home Care.)

OTHER GENERAL QUESTIONS:
1. Would additional outside support on Sunday nights (and potentially for a short period of time on Saturdays for bathing/toileting) provide the necessary support for Weekenders to continue the Home Care Scenario for the time being? If yes, then how does this impact fund availability?

2. Should we set a "date" at which time we will abandon Home Care and move the Nursing Home Care?

3. Where are we now, on personal levels, in terms of where we think the best place is for Mom to be?


Believe me, there are lot more discussion points, I know. But these are constantly swirling around in my head. My fear and agita is over the very real possibility that Mom is not near the end and that she could go on and on for more than a few months just like she is. I think we are at decision time and need to reassess where we stand relative to Home Care vs AL/SNF. I for one hear and feel the Home Care commitment falling away - for many valid reasons. We are at a cross-roads.

Meeting With Interim health care Today I met with Lisa from Interim. I think most of us now the drill. She came in to evaluate Moms condition and attend to the leg wound. She told Maggie,Morris and Me that she will have a social worker call me and set up a time to discuss the needs of either assisted living or a nursing home. If anyone has any questions or ideas, please e-mail them to me.(tom.lanahan@bms.com) I will let everyone know when the appointment with the social worker will be scheduled..She didn't have a lot of information for me on this matter. She felt like it was to late for assisted living. Think about Morris's condition and compare that to Mom. A big diference in my opinion. The social worker would be able to give us better information on which way and how to proceed. I will get a call sometime this week and set up an appointment with the social worker.

She is also having a physical therapist call to evaluate Mom and to see if we make things easier on all the caregivers. This is also where we can get the information on an air mattress for the bed sores.She gave Maggie some diferent bandages and saline for all of Moms wounds. This way we don't have to change every day. Lisa will be back this Friday to replace the bandages. I'm sure everyone has a lot more questions or thoughts or ideas. Please let everyone know what they are.

As far as Moms condition- I agree with Eileen and Dan. It is a lot more dificult to attend to her needs. More help is needed. Dan and I can't be there on Sunday nights getting up every half hour to hour and a half and then go to work Monday am. This will not work for us. He and I will discuss who we will call for a Sunday night stay.

Tom

FURTHER THOUGHTS

After having been with Mom and the caregivers for two weeks, here are a few other thoughts:

1) We need to continue to insist that she feed herself. She CAN feed herself if she is positioned upright in the chair, with the tray as high as it can go, and with her elbows free. Put a "clothes protector" (bib) on her. Once this goes, we are again in a very different neighborhood. She has to be prodded. She's hungry because she asks for food, but will give up easily. Next step in my mind is to give her strictly finger food - no foods that require utensils.

2) Her body is giving in much sooner than her mind which is going to make caring for her much more physically demanding. It is already close to being too hard for one person to handle, with bathing and toileting being at the top of the list of difficulties. The alter ego who appears at 5:00pm ("Helene" as Maggie calls her) makes it even more difficult. She is not going quietly into that goodnight.

3) If we require more outside help, we'll be spending more money. Each of us needs to evaluate how we feel about continuing home care. I for one think we need a medical assessment so that when we are at the decision time, we have all the information we need. I do not know what would the the tipping point between Assisted Living Facility and Skilled Nursing Facility. I am a proponent for Assisted Living. The only thing disqualifying her presently are the wounds she has. Once these are cleared, the longer we wait, the more we are sealing her fate, i.e., a Skilled Nursing Facility (nursing home).

That's all.

Weekend update

Mom is declining much more rapidly than just a few months ago. This is not a temporary downturn or one we can reverse. We need to focus on what's best to manage the suffering and pain. Today a strong person can handle the physical care needs but soon it will require two people.

On Saturday, Mom was up during the night every 45 minutes moaning and calling for help. She seems to be in pain but can't really express where or what it is. I think the pain is all over but it's hard to tell because she can't really express herself well, especially at night. I filled the prescription for Lortab (pain med) that was given to her when she went to the emergency room for the cut on her leg. The prescribed dose is 1 -2 pills every 4-6 hours, I believe. On Sunday, I gave her 1/2 dose at bedtime but it did not help very much. She was up every 1 - 1.5 hours calling for help but there doesn't seem to be anything you can do to help. I'm not even sure she realizes she is moaning and calling for help.

I asked Maggie to try 1 pill (as opposed to the 1/2 I tried). She had Pam give it to her at 8:00 PM and Maggie reported today that Mom slept until 4:30 AM before doing same as above but then went back to sleep until 9:00PM. They will continue trying this during the week to see if this makes a difference or if it's just coincidence. If it makes a difference, then we can talk with Pugh about a long term pain med regimen.

I can certainly take the lead to sit down with Pugh to discuss the long term care needs but if we are considering seeking advice from someone else because we don't think Pugh is the guy to manage the care then I don't think it makes sense to speak with Pugh.

Dan

ADDITIONAL UPDATE 10 20 07 - ITEMS PURCHASED AND AVAILABLE

October 20, 2007

WHAT I HAVE ACQUIRED FORM COSTCO AND WHERE IT IS LOCATED and FOODS IN FREEZER*

*For those of you who think I may have squandered caregiver funds, fear not….I am contributing these items to the Caregiver Cause.*

What I have acquired from Costco and Where Located

Lysol Toilet Bowl Cleaner – In each bathroom
Pine Sol – In Mom’s bathroom
Baby Wipes – In Mom’s bathroom
English Muffins – In Freezer
Whole Wheat Bread – In Freezer
Depends – Size Medium - Mom's bedroom
Kleenex - In hall bathroom

Wound Care Needs that are OK for about another week and a half, but some will need to be replenished (these are all in the Wound Care Basket by Mom’s Bed):
Non-Stick Pads
Wrapping Gauze
Gauze Pads
Hydrogen Peroxide
Sterile Saline Water
Cloth, Non-Stick Tape
Polysporin (can only be found at Walgreens in a large enough size to make any sense)**

Food for Consumption in Freezer (Pam is going to take the soup out the day before and defrost it.)
Turkey Noodle Soup – She likes/accepts it.
Vegetarian Vegetable Soup
Beef Vegetable Soup
English Muffins
Whole Wheat Bread

Medications
Dr. Pugh refilled all medications, so refill numbers have changed. The paperwork is in the Meds basket with a reminder note. The only refill I have filled on the NEW meds is the furosemide. This is noted as well. (NOTE: If meds are not refilled by Pugh during an office visit, his office charges $20 to update and call in the refill to the pharmacy. The Pharmacy can not call Pugh's office on Mom's behalf - per Pugh's policies.)

Mom is having a very difficult time swallowing the larger pills. Be prepared. Best way is to have her stick her tongue out with the water close by, you put the pill on the tongue as far back as you can get it and instruct her to drink and swallow as quickly as possible. Per Pugh, if she misses a dose or two of potassium, we do not have to panic.

**Also only at Walgreen’s, but you have to ask for it, is a dry shampoo cap – it is awesome. It costs $4.99. Maggie and I tried it and it made Mom feel very good. Also tames her fly-away hair. Maggie is going to use it once every week or two, and in between, use the dry shampoo spray. Feel free to use it anytime you want to. Probably best in the a.m. while she is sitting on the toilet. Gives her time to move her bowels.

UPDATE FROM EILEEN – October 20, 2007
(I apologize for its length, but I was very busy this last two weeks. I will be starting a new job on October 29. I will stay involved, but others need to be more actively engaged in order for us to make any progress.)

Based on what follows, here is recommended Strategy:

MEDICAL ATTENTION:

1. Get Home Health Nurse in. Pugh was supposed to order it for skin tear and pressure wound monitoring (and so we can get an air mattress, but so far, no contact. We can get direction from the Nurse as to how to work towards getting Mom some of her mobility back (simple, in-home exercises? Pam has offered to help us here if she is given OK and some instructions.)

2. Get Pugh to refer Mom to the Center for Success in Aging (brochure in kitchen on desk) so that we can get a geriatrician to give us guidance. I’m not so sure Pugh is up to it, but that could just be me. See below.

3. Schedule Conference with Pugh to discuss the recent down-turn and how to go about improving it and or alleviating it. Mom needs pain management care. She constantly complains and can not sleep because of it. Consequently, neither can the overnight caregivers who are then less effective in the day, every day.

Someone who has a relationship with Pugh and/or his office needs to get this done. In addition, someone needs to take the lead on Mom’s continuing and developing medical needs. Who will that be?


HOME EQUITY:

We need to get the equity in the house to a “liquid” state, but we have made progress (See Below). We can have a reverse mortgage in place in 30 days. In order to make any decisions on how to proceed, we need to know as closely as possible, just “how much money” we have.

I will continue to be the main point of contact and will work with Dan and Mary Kay to complete. This can not be done without a POA.

CONTINUE IN-HOME CARE OR MOVE TO MEDICAL FACILITY?
I have felt completely ill-equipped these last two weeks to make a rationale decision on how to proceed. That is why I think we need some medical advice and some idea on prognosis and what we can expect to happen. We can get it from the Home Health Nurse and Pugh immediately, or find our own geriatrician and get an appointment ASAP. We can get a better picture from the Center for Success in Aging, but we can not get an appointment until late December/early January. Whoever is taking lead on medical needs has quite a few options here.

Center for Success in Aging – an evaluation service of the Greenville Hospital System that “will provide a comprehensive geriatric assessment team approach to diagnosis and care planning”. To get an appointment, Dr. Pugh must call and make a referral. The earliest available appointment is end of December/early January, once he calls.

In-Home Care is our only option at this time in the short term, with potentially more need for outside care. Perhaps the Action Steps I have identified will provide us a different answer or more hope in the Long Term. Mary Kay&Bob, Vic, Tom and Dan need to stay in touch and stay involved. You are going to be needed.

I can not see us moving Mom to a Skilled Nursing Facility. Once we have a medical opinion, we might change our minds, but we can not just simply decide this and do it. Assisting Living places can not take her right now because of the pressure sores and skin tear. They would not be allowed by law to admit her.

OTHER THOUGHTS:

HOME-CARE ALTERNATIVE – Will Take Some Time to Get in Place
- I have located what I believe to be the “right” spot for Mom – The Cottages at Brushy Creek (depending on what the evaluation noted above reveals)
- Everyone should make an attempt to visit it while they are here
- It is a skilled nursing facility that has the feel of an assisted living facility (more like “home”)
- Private Pay + Medicaid
- Waiting list is “long” – 60 people for private pay consideration/100 people for Medicaid consideration
- Admittance is not necessarily “first come-first served”
- Application is submitted which generates a second paperwork step that is more comprehensive
- Team of Social Workers gather to review applications and determine which applicant can benefit the most from their services
- I made the case to this Social Worker that Mom’s recent decline could possibly be related to an overall inattention to her physical and social needs as a result of the in-home care – the initial reaction seemed positive from the SW who said “yes, this would be the type of thing that would receive more attention on the application.”
- Application is coming. I will take lead on getting it completed and returned.

ASSISTED LIVING and SKILLED NURSING FACILITY SEARCH
- Because Mom has a pressure wound and a skin tear, she would not be eligible for any Assisted Living residence until they are healed
- It is hard for me to imagine that we could make a move to a Skilled Nursing Facility, which is an institutional alternative, that she would outright reject – (think NHC-Mauldin and the rehab facility – that’s what they are like)
- In my opinion, we would be better off making her move downstairs and get the benefit of more activity to be provided by the home caregivers than to force this alternative (EXPLANATION: What I like about AL settings is the level of activity and socialization that they get – exactly what they don’t get in a SNF)
- Admittance to both AL and SNF is based on bed availability – we could make advance application, but it seems to me that we have to first decide that this is the route we are going to take – otherwise, we should put our efforts into determining how to continue in-home care and

- IN THE MEANTIME, wait out The Cottages at Brushy Creek which seems to offer exactly what we need

CONTINUING IN-HOME CARE IN THE LONG TERM
Outside Caregivers are committed to continuing, but they will need more of our support than ever in terms of additional expenditures on supplies and equipment as required (wound care and air mattress, for example) if not our physical presence when we are able to be there.
We have to continue In-Home Care for the time being, but we need to re-assess our resolve for the long-term. When you are here, please consider very carefully your ability to provide the level of physical care that is required on an on-going basis. What I am suggesting are two things: (a) We might need to provide Maggie with additional help in order to keep her going; and (b) You might need additional help from Maggie or someone over the weekends you are now taking (3 nights/two days).

We need to keep any decision-making we do in the context of the impact on Tom and Dan. In my opinion, if I had not been here for the last two weeks, Tom and Dan in particular would have had to been very “hands-on” with getting everything “set up” for this new phase of Mom’s physical condition. Maggie, Pam and I have experimented, analyzed, adjusted, purchased items, etc. to keep things going.

FINANCING CONTINUED HOME CARE OR MOVE TO A FACILITY
· We received the HUD Certificate that was the required first step for getting a reverse mortgage in place. (Thanks, Dan!)
· The Certificates are valid for 6 months
· If there are alternatives to the reverse mortgage, we need to get them on the table
· If there are no alternatives, we need to make it happen
· One of those with financial POA has to be involved now to the end of the process
· Next step here is reviewing take-down options and getting it in place
· Once this mortgage is in place, we will know exactly “how much” we have to work with

UPDATE TO COME

All - Look for an update later today or tomorrow. I am starting my drive back to NJ on Sunday and will be home on Monday. I wish I could stay longer. I wish I could find comparable work in Greenville and just be the live-in. So far, no luck.

The update will cover:

• Assisted Living/Skilled Nursing Facility Overview
• The Center for Successful Aging - The Cottages at Brushy Creek.....very interesting place. Everyone should consider visiting. I am leaving brochures in the kitchen.
• Question to consider: Are we are at a crossroads? Is In-Home Care likely to eat up more funds and become more costly as we go through the decline? Would we be better served to move Mom now?
• Would a move of Mom downstairs offer us more opportunity to enhance the quality of Mom's life or would the chair lift suffice? Either way, it seems, would require expenditure of funds.
• Related question: Options on financing whatever it is we will do.
• What I have acquired from Costco, etc. for in-home care support and where it is located
• Foods I have prepared for future consumption and what is in the freezer

I'll reiterate what I said before: the Caregivers are committed to continue but, in my opinion, we do run the risk that the physicality of the job will cause a catastrophic change in their ability (hurt back, for example.) I'll let you draw your own conclusions about this so it is extremely important that you experience it first hand.

In general, things seem to be more in control and more predictable in terms of Mom's toileting needs. She is accepting the "panties that have the built-in pad" (i.e., the Depends). No one has used the word "diaper" or "Depends" in front of her....

As you look at this list, fire back some thoughts/questions so I cover what is on your mind.

Thanks.

Eileen

UPDATE - Maggie's Plane Ticket

FYI - Purchase Maggie's ticket - It was $500. So far, Jane, Tim&Shawn, MaryKay&Bob and me have contributed $100 each. I will make up shortfall if no one else contributing. MaryKay&Bob have also offered to make up the shortfall, but I'd like to trump them since it was my idea.

Unless you hear from me otherwise, this is how it has ended up.

Thanks.

Eileen

UPDATE - Condition, Skin Tear Wound and Nursing Home Search

GENERAL CONDITION: Weak but hanging in there. BP the same. More moaning/groaning in general. Harder to sleep. We have in the Depends 24 hrs/day now. She noticed them at first but Maggie and I just told her that they were her panties with the pad built in. She is accepting them. In a huge way, they take some pressure off of her and the caregiver. She is more incontinent, i.e., doesn't even know that she is urinating. Is becoming more accepting of the bedside commode, but at times there is still a struggle to get her on it. She will be very vocal, but cooperative if you insist. However, at least twice, she has physically resisted me putting her on it. So be prepared. My take on it is that she has the Depends on. I did not force it.

Had a BM that she was unaware of once over the weekend as well. Depends makes it easier to clean up but you must lie her on the bed. She is not capable of holding herself up long enough for you to finish. If you can consistently get her on the commode, this is not an issue. Sometimes you jut hit it right - and that's a lot of fun too.

Morning routine: wake up, keep her in bed, remove clothing, bathe her (she's been in a Depends all night that will be completely soaked through), sit her on commode, while she is sitting, have her brush her teeth (this keeps her occupied), she will typically do her thing at that time, finish getting her dressed while she is sitting on the commode, move her to the walker and proceed to the kitchen.

SKIN TEAR WOUND and PRESSURE SORES: Dan left work early and he and I took her to Pugh today because infection setting in in the skin tear wound. Not serious at this point but he gave her a mild antibiotic. This will take MONTHS to heal. If the skin does not reattach itself, a surgeon may need to remove the dead tissue. Fluid retention is an issue in terms of keeping infection at bay. As Pugh described it, she is between a rock and a hard place in that increasing diuretic puts more pressure on her kidneys that are already compromised. He has recommended an increase in the metazalone (sp?) to 4x per week (she currently is taking it 3x per week) until risk of infection is gone which could be several weeks or months. To give you an idea of what we are talking about, to call it a tear does not quite describe what it is. It is deep and not simply the outer layer of skin. It is healing from the inside out. No scabbing. Raw healing. It will heal best in a moist environment so it is being kept covered with polysporin and wrapped each morning. Just once a day wrapping is all that is necessary as long as it stays in place. Mom is not in discomfort because of it except when it is bumped.

Pugh is ordering a Home Health Nurse to monitor the wound. This Nurse will also monitor the pressure sore and make recommendations on air mattress to aleviate pressure sore recurrence. My research reveals that Medicare will pay for an air mattress for the bed. I think we should push for one for the chair as well.



EATING SUPPORT: Interest in food there, but more difficult time seeing it and getting it to her mouth. Recommending a bib (paper towel, hand towel) to cut down on spills onto her clothes. She can see those blemishes for hours and hours and they bother her.After some keen observation on my part (ha! ha!), Tom and I figured out a way to better support her self-feeding. Raised the tray table to its highest height. It's supporting leg that extends out can then fit under her legs between the chair and the stool. Her feet have to be on the stool and the chair has to be in a way up position. Make sure her elbows are free from the pillows and she can maneuver a spoon or whatever.

Fill glasses only half full. They are too heavy otherwise. Smaller drinks, more often is the rule. Small bites, hand foods are perfect. She does better at this than with utensils right now, although she loves her soup and a soup spoon works well.

REVERSE MORTGAGE. Dan, Mom and I successfully completed the HUD counseling step. The certificate she gets will be good for six months so we have six months to put the mortgage in place. Have been advised that we can get it done within 30 days by the banker I've been conversing with. As a side note, it just so happened that Morris showed up for a visit at the time we were starting the call. He sat in on it.

NURSING HOME SEARCH: There is only so much we can do prior to checking her in. Unless we are prepared to move her "now" we have done all we can do. It all depends on who has a bed available. It is at that time that you fill out an application, etc. I am recommending we all get through a weekend or a time period of caregiving and then circle back to discuss how to proceed in this regard. Lots of communication and commitment to the home-care environment required now going forward.

Let me know if you have any questions or comments.

Thanks.

Eileen

!!!!!!MAGGIE AND VACATION!!!!!!! PLEASE RESPOND ASAP

Maggie asked me earlier today to help her search for airline reservations for the following dates:

12/20/07 to 01/03/08, a two week period when Jane will be here

A FEW THINGS:

1) The airfare we found was approx. $450 and Maggie said that was too much for her to pay. I'd like to contribute to her vacation in the way of an Xmas bonus and just give it to her now to support her time off. I was going to do that anyway on a personal level. ANYONE ELSE INTERESTED? I'm sure she would be grateful. Her commitment to us and Mom is incredible.

2) In terms of our "policy" with caregivers, have we agreed or are we agreeing to paying Maggie vacation? I seem to recall that this was not something that was discussed or clarified so we have an opportunity to direct the outcome here in a way. I'm for paying for at least a portion of it (one week) out of current funds. Any other thoughts? Since this will impact our funds to pay for ongoing outside care, I thought it best to get people's ideas.

3) I wanted Jane to know Maggie's plans as this will impact her, particularly if she has plans to work from here as she has in the past. Jane - I am assuming that you will need fill-in for Maggie during the day, correct?

4) I am finding it very hard to do the lifting, etc. of Mom. Maggie does not seem to have a problem. She says she is used to it. Again, I know it is hard for everyone to gauge their relative strength here, but it really is something to consider on a going forward basis, and Jane, again, what will your needs be during that time period? Day and Night support?

Thanks, All. Would love to hear from you soon in regard to Maggie's time off and any gift we'd like to make to her, and any fund support we'd like to provide.

Eileen

UPDATE ON A FEW ITEMS

BLOOD PRESSURE: Today BP is 106/63. Her mood and alertness is remarkably better than it has been since the weekend when the BP was 96/51 at its lowest. No idea how/why it has increased. I'm making the bold assertion that you can predict how her day will go by noting her BP first thing in the a.m.

NIGHT VISITORS: Every night now, Mom wants to kick Morris out of her bed because he snores so loudly that she can't fall asleep. I think the mouse is gone, but Morris just won't stay quiet long enough for her to get some good shut eye.

ENTERTAINMENT: I added Ken Burns' "The War" to her video library. She is really enjoying it. She loves to watch WWII stories, etc. You enjoy it too as you sit with her!

FOOD: I am making plain vegetable soup, beef vegetabel soup and turkey noodle soup for her to eat and freezing it in small containers. If you can think of anything else that would be good to make to freeze, let me know and I'll make it. Not much else to do!

BEDSORE: Still hanging in there. I am investigating an air mattress and and air pillow that would move (like she had in the hospital). Maybe Medicare will cover. She is still not moving enough to prevent it, I don't think, but this is a hard proposition.

LEG WOUND (Skin Tear): Doing OK. No sign of infection. Still a bit weepy, but it was deep. Conferred with Andy (he is now a full fledged ER Nurse) and he has advised that new treatment thinking on skin tears is to keep them covered and put antiobiotic ointment on them. It should heal faster. We left the covering off yesterday (prior to consult) but will put it on today.

IN/OUT OF BED TECHNIQUE: Put bed flat, and with head lower than feet, when you first put her in bed. Let gravity help you position her so that she is not too far down in the bed and so that the raised head will support her back and not break at her neck. Center her as best you can in the bed. Have her bend her knees and you support neck and back and scooch her up with a "1-2-3" so that she pushes as you pull. Once she is situated, rais the head to comfortable level.

IN/OUT OF CHAIR TECHNIQUE: The "Dance": She puts her hands/arms around your neck and with a "1-2-3" you lift (be very careful to lift with your legs and not put your back out). Take a few seconds to steady her on her feet. Tell her to "straighten your back" and she will. Slowly turn her to position her on the walker seat. This is the most difficult. She will complain a lot because it will confuse her and she will not be able to move very quickly. IT IS AT THIS TIME THAT POSES MOST RISK FOR SKIN TEARS IT SEEMS. You have to have the walker close to you, but it has a lot of things that stick out and that she can rub up against as you turn, and you are sort of blind to them as she holds onto you. Just be careful. I'm sure you can figure it out. Also, the walker tends to scoot away from you on the rug in the kitchen (not so much in the bedrood) as you lower Mom to the seat. You need to put something that blocks it behind the wheel. A pillow works.

PACEMAKER DEPENDENCE: Some have been wondering what this means. Again, conferred with Andy and his explanation was that it means is that if the pacemaker should stop for some reason, which is very unlikely as these things go forever, she will have to rely on her heart to generate the beat and her heart is now only beating 40 times per minute (I think normal is 60? or 90?). She would experience a marked decrease in motor abilities, etc. if it should stop and she would have to rely on her own beat generation. Her heart should have an indepedent beat generation point absent the pacemaker - which can be determined at any pacemaker check by the technician. Maybe Gaucher's office already knows what this is......? Per Andy, the pacemaker will most likely outlive her.

(As a side note: pacemakers last so long, are in such demand and are so valuable ($60,000) that people are now "harvesting" them after their loved ones' deaths and selling them. Recent court cases have been argued about who "owns" the pacemaker". Is it the insurance company or the patient?)

CLOTHING: She is taking to the dresses I have bought except for one which she described as "the ugliest thing she has ever seen" and she "would never wear it in a million years". Needless to say, I am returning it but two out of three ain't so bad. If you intend to contribute any, be sure to keep the receipt.

WORKING ON TRANSITION OF MOM TO HIGHER LEVEL OF CARE

Just wanted you all to know that Maggie and I have been working on some transition strategies for the new level of care required to keep Mom at home. Mom is decidedly weaker, coughs more, hardly drinks anything, has very low blood pressure (but not out of the normal range for her). She still has an interest in food, but she does not seem to get much down. Her pill swallowing is fine. Vic had some problems on the weekend, but no problems at all this week.

Here's is where we are and further thoughts:

1. I have bought several shifts for her to wear so that it easier to support toileting needs. Maggie and I are taking steps to get some hospital gowns which may also help.

2. I am looking for tear away panties (maybe I can find them at Victoria's Secret? - I KNOW - A SICK, SICK JOKE) to make it easier as well. So far no luck. Panties with a velcro side will help in two ways: easier toileting and easier clean up following accidents.

3. There have been additional bowel movement accidents (2) that Maggie and I are relating to her prolonged sleep. They have only been happening during the night and she seems to be unaware of them. We may need to go to diaper at bedtime........that's going to be fun! Maggie and I have discussed a more rigorous toileting routine (i.e., at the same time of day - just put her on it and let her sit for a few.) Maggie is getting some disposable pads for the bed to help keep linens clean and cut down on laundry. They are not expensive as she gets them from her sister's place of employment where she can get them for a discount.

4. Bedsore was almost gone, but has returned.

5. Mom is cooperating well with "the dance", i.e., a specific way to lift her on/off bed and on/off toilet. We all need to follow in Maggie's footsteps and require Mom to participate in any way to push herself up and stand (although supported) while adjustments are made.

6. Mom is accepting the bedside commode a bit easier. However, if we took the wall down in front of the toilet in her bathroom, she could use the regular toilet. Not sure if this would be that helpful. Still need to lift her anyway.

7. Stay Heartened: The caregivers (Maggie especially) does not seem to be as fazed (sp?) by this as we all are. She says it is a "normal" progression and she is taking it in stride. Her overall comment is that she may be bedridden soon which actually may make it easier to care for her.

8. Up/Down stairs - Two Options: Chair Lift or Moving Mom downstairs. I for one think the Chair Lift is the easier of the two. I'll buy it and will agree to be reimbursed down the road for it so that we can preserve current cash for in-home care. In my opinion, moving her downstairs is a good option, but one that will require a lot more effort, not in terms of arranging, but in terms of fall-out. No. 1, she has already refused the idea and No. 2, if we move ahead anyway and force it, locals will bear the brunt of it. She could refuse the chair lift as well, but it would not create a constant flood of uncooperativeness. We probably need to be more sensitive to the fall-out impact as we continue to move forward. Just my opinion. Agree or disagree.

9. Dan and I are completing 1st steps to reverse mortgage on Monday which is HUD Counseling requirement. Cross your fingers that when HUD Counselor asks Mom "Do you have any questions" she doesn't say "I don't know what you are talking about.".......I am creating cue cards for her to read.

10. FINAL THOUGHT: I cringe when I go to these nursing home facilities and want so much just to keep Mom at home. I can only hope that there will be some sort of medical emergency that will require hospitalization and then a move to a facility that will care for her in her remaining days. I just don't see that we are going to be able to move her from home to a nursing home directly. With that said, to keep her at home will most likely require additional cost as time goes on. Once she is bed-ridden - or maybe even before that time - we will need skilled care on the weekends at least for a period of time during the day.

Let me know if you have any questions of me or further comments.

Thanks.

Eileen

NURSING HOME REVIEW No. 1 HAVEN and BRIGHTON GARDENS

Doing some leg work here and wanted to give feedback ASAP. Here you go:

TERMS TO GET ARMS AROUND SO WE ALL ARE TALKING ABOUT THE SAME THING:

ASSISTED LIVING FACILITY - Identified as such based on a business model and defined by the State. Basically, if Mom has any of a list of specific conditions that would require special nursing/medical attention, she would not be able to be in an Assisted Living Facility. The list is short but includes: bedsores, diabetes, if daily injections are required, colostomy bags, ventilator or oxygen requirements, etc. Conditions such as incontinence and immobility would NOT disqualify her. Impact would be higher cost based on higher required level of attendance by facility caregivers. Private Pay Only. No Medicare or Medicaid.

SKILLED NURSING FACILITY - Typically attached to an Assisted Living Facility but can be a stand-alone facility. It is where someone in an Assisted Living Facility would be moved to if conditions arose that would disqualify them (state mandate) for the Assisted Living facility. If attached to AL Facility, there would be Medicare coverage for the condition that arose to require a move to the facility. This is a HOSPITAL setting - just like the rehab that Mom was in earlier.

SKILLED NURSING FACILITY (as stand alone) - I am attempting to visit at least one of these that is listed with Medicare/Medicaid allowances. May require physician care plan for entry/eligibility.


MONDAY, October 8, 2007
Visited two sites.

THE HAVEN: Assisted Living Facility - Private Pay - Current Unit avaibility

• Specializes in dementia and Alzheimer's care
• Very clean, peaceful, active and professional
• Near to Westminster where Morris is off of W. Faris Road which is on the other side of Augusta Road (to give you an idea of where it is in Greenville)
• 3 levels of care (from early onset to late onset Alzheimer's)
• Saw all 3 and patients as well - All patients were clean and groomed - everyone seemed content
• Rooms are private rooms (there is a $600 per month savings for a room share, but I don't think there were many of those)
• Included: armoir, private toilet and sink - bathing done in common bath area that is equipped for every patient need, i.e., seats, bars, etc.
• Common eating area in center with bedroom units encircling - patients can wander in area without getting "lost" - each unit is security locked - no access to outside without code
• No Skilled Nursing Facility attachment
• COST: Approx. $5,950 per month - this assumes highest level of care - BREAKDOWN is $4,700 base payment with Level 6 care of $1,250 (Small additional per month fee for medication management)
• Nurse would conduct an assessment to determine care level and eligibility based on state mandates noted above
• No requirement for financial disclosure from us or spouse - invoicing is in name of financial POA
• Provides Respite Care to support in-home caregivers (give them some time off) for $180 a day - some people use this as a trial period - facility will allow, but advises that adjustment can not typically be accomplished in a two week time period

BRIGHTON GARDENS: Assisted Living with attached Skilled Nursing Facility - Private Pay - UNCERTAIN as to availability - am expecting a call from sales organization

• Operates separate unit for Alzheimer's/dementia care - for some reason, I was shown where the door was, but was not taken in to view
• Seemed more active (not as peaceful), not as clean, areas requiring paint touch-ups, dogs visiting, resident dog in attendance
• Down Pelham Road - very near to 14 Ivanhoe
• Assisted Living eligibility much like The Haven, but most patients seemed much more independent that Mom is - many not ambulatory, but did not observe very many patients with constant attendant
• Skilled Nursing Facility attachment (private and semi-private hospital like rooms)
• Choice of room configeration - studio, two room, two bedroom (higher cost for larger rooms) with rooms on 1st, 2nd or 3rd floor - hallways, not encircling as noted above
• Private bathroom including toilet, sink and shower
• Self-furnished - studio large enough for a full size bed, bureau, side tables and probably two chairs, TV stand
• Common eating area
  COST: was a daily cost - was shown the cost sheet, but the cost sheet was not placed in the packet I walked off with - accidentally, I think - as I recall the highest level of per day cost was $165.00 (again based on level of care needs)
• Medicare processing available for doctor portion of needs if patient moves to Skilled Nursing Facility
• No Medicaid beds

Oct 07 ... comments

just an fyi to clarify some concerns:
1) H. condition to continue to deteriorate, that we all expect - there will be good days, bad days, but we all know what the trend is
2) for now, the M-F outside caregivers + weekend kid duty is working best as can be expected for all
3) sooner/later weekend kid duty won't work, as when H. is completely immobile - which kids can do the care on their own at that point? Related to this is the gradual need for more complex medical/physical care (e.g., treating bedsores, acute breathing difficulties) ... when that begins, the stuff we currently do for H. will appear as a walk in the park.
4) when kid duty is no longer workable, more outside caregivers will be necessary, more $ needed, probably at higher hourly rate
5) projected cost of -current- caregivers is $100K per year.
6) H. bank acct = ~ 30K
7) current funds support 1/3 cost of a year at current burn rate, i.e., 4 months
8) H. monthly income ($2K ???) extends that a little, kid $ extends that some more
9) home equity is a source of $ to support H.-stayAtHome beyond bank acct balance + kid support
10) still, the $ burn rate appears too great to be supported by these much longer. NOTE: If I have not done the math correctly, let me know - I am hoping I have made a mistake in my projection of $ coverage lasting for 4 months. There may be more current $ info that I am unaware of that I have not taken into account.

this, I think is the crux of our problem - not enough $ resources to keep H. at home for what could be an extended period - this of course is the unknown that is making it so complex.

secondarily is the whole nursing home situation - from my readings of all who have done the difficult research, there are many legal issues involved with getting a check-in arranged ... there are govtIns asset reqmnts, there are Morris/marriage related issues, there may be unexpected issues that come up as we go in this direction ... all of this implies long time frame to get this accomplished. That is why moving out in this direction should begin now ... get ready for it, get everything done but the check-in and then bide our time til absolutely no question it is the only thing to be done. This may be wishful thinking that we can do this, but maybe we can.

comments welcome.

thx.

This Weekend

I'm on my way down this weekend with Rose. Actually she's coming Sat. Sounds like I'll need the help. Rose used to work in a nusing home, so she's very familiar with the drill. She and a co-worker used to handle about a dozen patients on their shift, feeding, clothing, cleaning, etc. If there's anything I can do to get nursing home process done, call me and let me know. If nothing else I'll sit down with the application with Morris just to get that started. I assume I'll see him. I'll call him over if necessary. Do we have the application? What I intend is to at least go through a "walk through" session with Morris so he'll get the information he needs. Good idea? Bad idea? Does somebody else want to do it or better prepared for it? Let me know.

Moms Condition-additional Comments

I just want to add a couple of comments in addition to what Dan and Eileen have said.
This past weekend was probably the worst one I have had to date. Caregivers now have to clean Mom up after she uses the toilet. She just doesn't have the strength to do it herself. Ask Maggie and Gwen, they will tell you the same. Maggie says she is now brushing her teeth. Mom can only get the toothbrush to her mouth, but not actually brush. I watched her eating a bowl of cereal and she could barely get the spoon to her mouth(today). She was waking up about every 1.5 hours yelling for Morris. When I went in she was complaining she couldn't breathe. I would move her to an upright position(using the new bed) and it would help. Gwen called me last night saying the same thing happened to her last night.

I am all for starting the reverse mortgage process and applying for a nursing home now. Hopefully Tim can let us know what he found out in April.

The eye doctor said her eye is in pretty good condition. No changes . We will continue to apply the gel 2 times a day. Next appointment will be in January, unless the eye becomes very red again.With Moms condition, the chair lift would have helped. Dan and I had to take time off work to get her down the steps using the wheel chair.

Tom

A few of us speak to many of Dan's comments in the Morris and Nursing Home posts. I for one am committed to the reverse mortgage route and am arranging for the first step (which is a HUD counseling session) ASAP. This is the only way we are going to have the cash to support whatever our next steps are in caregiving. Fortunately, this step does not require Morris' input.

I have reached out to our reverse mortgage consultant to see what the ramifications of a POA being on the phone without Mom. It should work. I was averse to disclosing this in our initial conversation. Felt like he didn't need to know it at that time.

Will let you all know results, i.e., if the POA can stand in on the HUD counseling call.

Mom's condition decling much faster now

Concerning Mom, she is declining quickly, physically speaking. Mentally, she seems the same. I don’t know if this is one of her down phases that she bounces back from or not but based on current condition, she will be immobile very soon. Her feet are turning inward and under so she is close to zero stability on her feet. Forget about walking anywhere! She has enough stability to transition from one seat to another, for now. Her strength and coordination are rapidly declining. She can’t clean herself after using the bathroom and Maggie is no longer bathing in the bathroom – too dangerous. Over the weekend, she had no control of bowel movements nor seemed to sense that she even needed to go. She couldn’t muster the strength to get her left foot off the ground so that I could slide her pants on – I had to sit her down. I think she may be bedridden soon. You think it was tough in the past? Now is when it gets extremely difficult.

After we met with the lawyer, we agreed that the action items were to:

1. Determine how best to deal with the Morris issue, ie, his obligations as a husband, his financial contribution to the care, and the impact of both on nursing home care for Mom should we get to the point that her mental or physical condition require care capabilities that we cannot (or will not) provide at home. We've done nothing.

2. Better understand, plan, and prepare for a nursing home move, should it be necessary. Where is Tim's report on the nursing homes? We've done nothing beyond Tim visiting a few places.

3. Implement a reverse mortgage to get more cash to support the effort. Let's at least get this done and work our way up to more difficult issues above.

Mom is declining quickly - time is against us.

Dan