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.
Wednesday, October 31, 2007
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 ...
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 ...
Tuesday, October 30, 2007
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.
Thursday, October 25, 2007
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.
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.
Wednesday, October 24, 2007
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
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.
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.
Tuesday, October 23, 2007
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
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
Saturday, October 20, 2007
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.
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.)
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
(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.)
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
Friday, October 19, 2007
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:
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
Tuesday, October 16, 2007
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
Unless you hear from me otherwise, this is how it has ended up.
Thanks.
Eileen
Monday, October 15, 2007
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
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
Friday, October 12, 2007
!!!!!!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
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
Thursday, October 11, 2007
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.
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.
Wednesday, October 10, 2007
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
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:
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
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
Sunday, October 7, 2007
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.
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.
Friday, October 5, 2007
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.
Wednesday, October 3, 2007
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
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.
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.
Tuesday, October 2, 2007
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.
Dan
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.
Dan
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