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.