94 year old mother in declining condition (child, parent, father, money)
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I have been reading here for awhile, but haven't needed to really post until now. But, wow, I really need to now so this will be long.
Situation until about a month ago - My mom is a widow who just turned 94. She has been living on her own. She does not have dementia. She is a little forgetful, but everyone has said she does really well for her age. She has a small house (one story) that she has lived in for over 70 years. Until recently, she still did some driving (stores close by during the day) and used a transport service for medical appointments.
I am her only child. DH (he is 70) and I (63) lived about 250 miles away from her. She has a few nieces in her area and they are some limited help. For many years, she had close relationships with her siblings but they have all died off (except one sister in assisted living). She had a younger friend who often helped her...but the friend just died. So, she has become more isolated.
In many ways she has led a charmed life in that despite her serious health problems she has managed well and has had few hospitalizations. She is a Type II diabetic who takes insulin. She also has kidney failure (doesn't need dialysis -- kidneys are fairly stable although not great). She has also had congestive heart failure for many years. It has progressed very slowly.
Over the years she has started moving much more slowly. She tires easily (due to heart failure) and her feet often hurt her (neuropathy from the diabetes). She has edema that comes and goes due to the heart failure. She also had one TIA some time ago. But -- despite all that -- she has managed on her own. She takes a flotilla of meds and has seen a variety of doctors but until recently was rarely hospitalized.
She has (like many) always been adamant about wanting to be independent and at home. We have offered to have her move in with us many, many times. She has talked about it being tiring to deal with just the basics of life (paying bills, dealing with repair people, taking care of her house, etc). We have expressed that if she moved in with us she wouldn't have to do any of that. But, she has always taken the position she didn't want to do that unless she had to. I expressed that it might be better to do it before she absolutely had to so that we could help her take care of herself. She eats atrociously for her diabetes and I think that has made things worse for her.
Late last year she started making comments about maybe, kinda, thinking about moving in with us. But, she said she wasn't ready.
Coincidentally, DH and I have decided to move to the general area where my mom lives (I grew up there and have family/friends in the area so decided to come here for a retirement home). We were getting ready to put our house on the market when we were asked to show it to someone. The result was that we sold our house shockingly fast leaving us basically homeless. We have rented an expensive short term rental in the area where my mom is. We are trying to find and buy a house ASAP. However, this area is a very hot real estate market so finding a place and getting an offer accepted is not easy. In a best case scenario we could be in a house in a month or it could be 2 or 3 months.
The past month - About a month ago (before we moved here), my mom had shortness of breath and went to the ER. This was the first time that her heart failure really bothered her for an extended period of time. She had a lot of edema in her legs and just lots of shortness of breath all the time. She was in the hospital for a week and then went to rehab for a couple of weeks. We drove up and visited her a few times during this (we had not yet moved here). She seemed to be doing fairly well. She was doing PT and was moving around better and her fluid went down, etc. She started talking about moving in with us once we found a house. She gets discharged from rehab and goes home with home health care to come 3 times a week.
So last week we actually move into our apartment here. Late last week, we go over to her house and she doesn't answer the door. DH goes around and finds her back door open and finds her on the floor in the kitchen. She has fallen but can't get up. She is conscious but just too weak to get up (nothing seemed broken). We called 911 and they took her blood sugar and found it was 32. Basically, she had taken a shower (without having a problem) but then got dizzy due to low blood sugar and fell and then lacked the strength to get up.
When she first got to the ER they were basically going to discharge her once her blood sugar got back to normal, but then they tried to have her walk across the room and she just couldn't process the instructions and just couldn't move more than inch or two. She was basically immobile. So, they admitted her.
I talked to her doctor over the weekend. She says that my mom is in a declining condition and she does not think she will get back to her level of function of a few months ago. She says that the immobility is basically due to weakness, partly from the heart failure and also just lack of strength. She said one problem is that my mom is not eating sufficient protein. While they don't want her to eat too much (due to her kidney problems) she said my mom is not eating enough. My mom has lost her appetite and basically complained about the food in the hospital and rehab. And, she says she has lost her taste for chicken and beef.
The doctor said that she doesn't feel that my mom can live alone at this point. She thinks she might be able to live with us particularly if my mom gets more mobile. She says that if my mom goes to rehab and works on walking that she thinks that my mom can get back to being able to walk at least short distances. During the past several days in the hospital, she basically did no walking. She had a potty chair next to her bed and would use it with help but rarely did more than that.
I asked the doctor where she saw things going with my mom. She said she hated that question (which I knew she would). Basically she said that she sees it right now as my mom being in decline but not a fast, severe decline. She said that could change if my mom got an infection or her heart failure kept getting worse. She mentioned hospice as a potential option if my mom goes to rehab but does not get more mobile. But, she seemed to think that my mom would improve in rehab although not back to where she had been. She said that another option was to do palliative care and that the doctor at rehab could do that if my mom wanted. (I don't think she talked about any of this with my mom). While she didn't like to get into timelines, she seemed to think my mom would most likely live another 6 months to a year although it could go faster if she doesn't improve. And, if she improves a lot it could be longer although the doctor doesn't think she will get back to where she was. My sense is that her heart failure was gotten much worse and the medications that have helped the symptoms aren't helping as much any more.
So -- Monday my mom went to rehab. We set her up with one close to our apartment so it is easy to go over and see her. She has not been very willing to eat or to try to move around much. For example, we arrived there today and she was in bed at mid-afternoon. This place does encourage movement (they want her to walk --with help and a walker -- to the bathroom in her room rather than use a potty chair). The OT encouraged her to get up and sit in the recliner (which helps with her breathing) and my mom finally did it but was reluctant to stay there. I did see her move around to go to the bathroom and using the walker she moved very easily although I know it was tiring for her.
My husband spoke to the OT at one point when she was outside the room and she said that there was no way the rehab was going to let my mom go home by herself. Of course, that is my mom's goal. But, she isn't very willing to do the things she needs to do to improve (primarily eat well and move around/sit up). At the same time, I know that my mom feels exhausted and weak so none of this is easy for her.
The Current Dilemma
Right now, we are in a difficult place in terms of having her move in with us. We are in a small apartment. It is 2 bedroom (one bedroom is set up as an office). We could move her into the 2nd bedroom if we got furniture for it, but this apartment is not handicap friendly (has only tub/shower combos). Right now, DH and I have to sometimes go places together (looking for houses) so we couldn't have one of us always here.
My mother's doctor said she could go to a nursing home once rehab discharges her until we get into our house. I don't love that idea because I am concerned that she will get some mobility back at rehab but in a nursing home there might be less effort made to help her with mobility. DH and I need her to be able to at least walk to and from the bathroom and get in and out of bed (we don't have strength to lift her).
Financially she is I think OK given her life expectancy. She could pay for a nursing home for probably close to 2 years without selling her house. If she sold her house she could pay for another couple of years.
I am uncertain what to do in the short term. I know that rehab probably won't keep her more than a week or two (whatever Medicare will approve -- my understanding is that Medicare usually balks at about 14 days). She had 14 days of rehab at the prior facility. I know a co-payment is due starting on day 21 but my mom has supplement G so that should be paid for. But, I expect Medicare will want her discharged relatively soon and she won't be ready to go home by herself unless she has a miraculous improvement. And, that doesn't seem likely. Today she told me she never thought she would be like this and she would rather die. At the same time, she seems to think she can go home. I think in her mind she can go home and DH and/or I could just stay at her house 24/7 with her. That is...problematical. First, we are in the middle of house hunting and have to be able to go do that. Second, we are committed to an insanely expensive corporate short term lease that we would like to use. Third, we have cats that are in the apartment. We could bring them to my mom's house but it is not very pet friendly. Fourth, my mom's house would be uncomfortable for us. It is a very small house with one bathroom. DH and I couldn't even sleep at night in the same room as the spare bed is very small. Also, there is no internet which we need for a variety of reasons.
Paying for 24/7 caregivers at her house is insanely expensive. We know someone in the area who is doing that and it is $13k a month. My mom would run through a lot of money very fast doing that.
So -- I basically come to two options to bridge the time until she moves in with us (assuming she can).
Option 1 - Once discharged from rehab by Medicare have her temporarily stay in a nursing home until we find a house and get moved in. She would have to pay for this but it would probably only be for 2 weeks to a couple of months depending on how fast we close on a house. The only concern I have is that she would enter the nursing home and would deteriorate from where she was when she left rehab and then by the time we had a house she wouldn't be mobile enough to live there.
Option 2 - Have her go to her house but someone by there 24/7. DH and I could alternate with one of us being there except when we need to do things together or just need some time off. When that occurred we could hire a caregiver to come in. This would probably work out to someone coming in for 1 shift several days a week. This would be difficult for DH and I since we would be apart most of the time while the other was in the apartment. But, we could encourage my mom to move around and do her PT and hopefully have her keep what gains she gets during rehab. And, if this was for only a few weeks to a couple of months we could manage.
Note that I recognize that her condition may continue to decline such that she wasn't mobile enough to be able to be at home even with help. If that happens, then she would need to be in a nursing home and she would be private pay. We would put her house on the market if it became clear that she couldn't return to it. Ultimately if she ran out of money she would go onto Medicaid but I doubt it would come to that. That is, if she is doing physically well enough to live long enough to run out of money then she would be doing well enough she didn't need to be in a nursing home. On the other hand, if she is physically unable to live with us then she probably has limited time left. (That said - I know that things can change. DH's mother was in a nursing home and lived for 8 years after originally going into hospice).
Mentally she doesn't need to be in a nursing home. She is starting to show more vagueness but I think a lot of that is just exhaustion and weakness. Her doctor made the point to me that it is simply her body that is breaking down.
It is difficult now because I don't know what condition my mom will be in two weeks from now. She is currently worse now than she was two weeks ago, but better than she was a few days ago.
Anyway - appreciate any thoughts on the options...
Option 2 - Have her go to her house but someone by there 24/7. DH and I could alternate with one of us being there except when we need to do things together or just need some time off. When that occurred we could hire a caregiver to come in. This would probably work out to someone coming in for 1 shift several days a week. This would be difficult for DH and I since we would be apart most of the time while the other was in the apartment. But, we could encourage my mom to move around and do her PT and hopefully have her keep what gains she gets during rehab. And, if this was for only a few weeks to a couple of months we could manage.
I'm sorry you are going through this, but on the other hand living to 94 is a very long life. I know it doesn't seem so exceptional because there are a lot of people in their 90s but she has really beaten the odds with her various conditions.
Quote:
Originally Posted by Koshka2
I am uncertain what to do in the short term. I know that rehab probably won't keep her more than a week or two (whatever Medicare will approve -- my understanding is that Medicare usually balks at about 14 days).
Option 1 - Once discharged from rehab by Medicare have her temporarily stay in a nursing home until we find a house and get moved in. She would have to pay for this but it would probably only be for 2 weeks to a couple of months depending on how fast we close on a house. The only concern I have is that she would enter the nursing home and would deteriorate from where she was when she left rehab and then by the time we had a house she wouldn't be mobile enough to live there.
It's not necessarily true that she will do worse. The nursing home my mother was in had a program of care where they would walk patients who COULD walk (holding onto them with special waist bands) -- and this was in the "regular" section of the nursing home, not the rehab section -- and other things to stimulate circulation and maintain mobility as much as possible. It benefited not only the patient -- but the staff as well. After all, the more mobility the residents maintained, the fewer care burdens there were like taking patients to the toilet or changing diapers.
They could probably get her to the point of being OK moving in with you. Although you will have to be prepared to hold onto her if she tries to walk at home. Maybe you could get her to use a walker or cane.
Sweetie, I hate to tell you this, but you don't really have two options. You have one option -- temporarily put your mom in a nursing home until you have a safe place for her to live. It is not workable for you or your husband to be at your mom's house 24/7. And let's face it, she may seriously decline anyway, even in her own home. Then what? The transition from home to nursing home will be much more difficult for her than if you transition her now from rehab to nursing home. It's difficult to accept, but sometimes a nursing home is the best place for someone as sick and weak as your mom. Look at it as temporary -- which hopefully it will be.
I'm sorry you are going through this, but on the other hand living to 94 is a very long life. I know it doesn't seem so exceptional because there are a lot of people in their 90s but she has really beaten the odds with her various conditions.
It's not necessarily true that she will do worse. The nursing home my mother was in had a program of care where they would walk patients who COULD walk (holding onto them with special waist bands) -- and this was in the "regular" section of the nursing home, not the rehab section -- and other things to stimulate circulation and maintain mobility as much as possible. It benefited not only the patient -- but the staff as well. After all, the more mobility the residents maintained, the fewer care burdens there were like taking patients to the toilet or changing diapers.
They could probably get her to the point of being OK moving in with you. Although you will have to be prepared to hold onto her if she tries to walk at home. Maybe you could get her to use a walker or cane.
I just want to clarify the Medicare payment a bit. Medicare with a supplemental can pay up to 100 days of rehab (without the supplemental it's 80% from days 21-100) BUT this is an important caveat, the patient has to be making consistent progress weekly. They have to be attending therapy 5 days a week. There has to be documentation that states she is attending therapy and has good potential to achieve her goals. A person who will not cooperate with therapy and is not making progress WILL get cut by Medicare, whether it's day 8 or day 38.
Just agreeing to get out of bed into a recliner for a short while is not going to cut it for long, documentation that reads "Resident refused to get out of bed, Resident refused therapy" etc IS going to get the person discharged from Part A services, and yes, 14 days is about right.
We usually give people every chance, and we write our notes in a way that reflects the patient in their best light as long as we can because we are trying to help the resident and the family, but we can't commit fraud to allow them to stay when they won't cooperate. We do whatever we can do to be able to document that the patient is allowing therapy. I've (I'm an OT in SNF) told CNAs that whenever Mrs. A, (who says "No" or even "Go to He*l" when we approach her for therapy) needs to go to the bathroom to come get me so I can work on bed mobility with her, walk her in, make her try to manage her clothing, stand up to wash her hands, so I can document that she received some therapy minutes that day. But we can't do that for 100 days.
What happens is we tell our rehab director, who goes in often with social work and discusses the situation, and tells the patient and family if they do not start attending therapy they will be discharged from Part A services and will either have to go home as-is, or transition to long term care. It's up to them.
Even with cooperation, a patient can't get 100 days just because. They have to continue to be making weekly progress AND not be at what the team feels is their maximum level of functioning. If someone gets to the point where they can go from walking 5 feet to 30 feet, then 3 weeks later they are still at 30 feet, then it's pretty clear that's as far as they are going to be able to walk, and they can get cut even if they were walking through K-Mart before they got sick.
I think what you're referring to is Restorative Nursing program. When people come off of therapy and are long term care, they go onto restorative. Many facilities also have what is called Park and Dine programs, where residents who are able to are walked into the dining room for meals.
The problem is OP's family member won't cooperate with getting out of bed or attending therapy, and is not eating. OP have you asked for a psychiatry consult? Your mom sounds depressed. Have they given her appetite stimulants? I would bring in whatever you think she will eat, even if it's junk food.
I'll share my story with you as it has some common elements:
I am also an only child. My parents, both 80s and healthy and financially secure, were living independently in a beautiful house. Myself, wife, and teen daughter lived 200 miles away. Years ago wife insisted we buy property large enough for a guest house for them to live in (wife's parents long deceased). We bought the property and built our house but I dragged my feet on the guest house. Parents not interested as they were healthy and content where they were.
Dad goes in for an outpatient cardiac cath. They find major blockages and he has open heart surgery and there are immediate complications, including kidney failure, and he spends several weeks in ICU. Goes to rehab and then home. He has lost some of his mobility, cannot drive anymore-and mom doesn't drive at all-and now must use a walker. They will be OK for a few days after hospital discharge and we have to return home so we leave. I tell mom to call a cab to take dad to/from dialysis. The day of his first outpatient dialysis I call mom and ask about the taxi. She hasn't called anyone. "Dad doesn't want to go. He is tired." I explain this can kill him so make the arrangements long distance.
It becomes clear to DW and I they cannot live alone. Now we are in a scramble to move them in with us. We have room in our house but now must get the guest house built ASAP. On top of all this our daughter is about to graduate high school so there is already a lot going on.
Dad's leg gets infected where they did the vein graft and things go downhill quickly. His mobility is now near zero and dad cannot be left alone and mom can not help him. DW or I must be there always so we are able to arrange work schedules to do this-it is 200 miles/four hours one way-until we can move them down. On time we could not sync the schedule and DW had to leave that evening and I would be there in the AM. She put dad to bed with instructions to stay there. Guess what? He got up and fell. Mom calls 911 and he is treated and released from the ER.
We finally get them moved into our house-without their stuff. We still need to travel back and forth getting the house packed up but at least we can schedule it around other things. The house, along with another property, are put up for sale-taking HUGE amounts of time. Dad's health worsens-GI bleed, silent heart attack, infection not healing (he is diabetic) etc etc...and winds up in the hospital and is moved to hospice where he dies three days later. Total time from cardiac cath to death: three months.
The guest house is built and mom lives there independently (except for driving) for nine years. Mom is now 90. Then at 1:00AM she calls me. She has fallen and can't get up but fortunately could reach the phone. She goes to the hospital and the diagnosis is Guillane Barre syndrome which is basically a collection of symptoms representing profound loss of weakness. Mom's weakness began in her legs but spread up to her arms and within a few days could only partially move one arm-sometimes. She has gone from totally independent to totally dependent in just a few days. She was miserable.
There is a treatment for this requiring medication through an IV drip once a day for six days (I think). The doc says if it works it will work very well. About three days in we learn that the results-if it works-won't be seen for 6-8 weeks. This means a nursing home once the IV treatment is complete. Mom will be miserable there. She is still 100% alert. We discuss this and mom decided to cancel the treatment. We all concurred. Mom agrees to go to hospice. She spent ten days in the hospital and twenty at hospice-total of thirty days start to finish.
Lessons learned:
-Be proactive. Your mom is 94-her whole body is 94. There may be small positive things but there will be more negative than positive. Her decline has begun. It will only accelerate. One step forward, three steps back.
-It sounds like a nursing home is the only viable option. Prepare yourself-and her-for that. She will never "improve" enough to live on her own ever again.
Medicare may pay for option 2 as a temporary situation. If they determined that she would benefit from therapy at home, they would cover the costs of the therapists and the aide for a limited time. I wouldn't count on it lasting more than 2-4 weeks since her conditions will probably limit progress fairly soon into her home healthcare.
It would buy you time to find a nursing home to place her and to spend some time on getting the home ready for sale at some point.
I just want to clarify the Medicare payment a bit. Medicare with a supplemental can pay up to 100 days of rehab (without the supplemental it's 80% from days 21-100) BUT this is an important caveat, the patient has to be making consistent progress weekly. They have to be attending therapy 5 days a week. There has to be documentation that states she is attending therapy and has good potential to achieve her goals. A person who will not cooperate with therapy and is not making progress WILL get cut by Medicare, whether it's day 8 or day 38.
Just agreeing to get out of bed into a recliner for a short while is not going to cut it for long, documentation that reads "Resident refused to get out of bed, Resident refused therapy" etc IS going to get the person discharged from Part A services, and yes, 14 days is about right.
We usually give people every chance, and we write our notes in a way that reflects the patient in their best light as long as we can because we are trying to help the resident and the family, but we can't commit fraud to allow them to stay when they won't cooperate. We do whatever we can do to be able to document that the patient is allowing therapy. I've (I'm an OT in SNF) told CNAs that whenever Mrs. A, (who says "No" or even "Go to He*l" when we approach her for therapy) needs to go to the bathroom to come get me so I can work on bed mobility with her, walk her in, make her try to manage her clothing, stand up to wash her hands, so I can document that she received some therapy minutes that day. But we can't do that for 100 days.
What happens is we tell our rehab director, who goes in often with social work and discusses the situation, and tells the patient and family if they do not start attending therapy they will be discharged from Part A services and will either have to go home as-is, or transition to long term care. It's up to them.
Even with cooperation, a patient can't get 100 days just because. They have to continue to be making weekly progress AND not be at what the team feels is their maximum level of functioning. If someone gets to the point where they can go from walking 5 feet to 30 feet, then 3 weeks later they are still at 30 feet, then it's pretty clear that's as far as they are going to be able to walk, and they can get cut even if they were walking through K-Mart before they got sick.
I think what you're referring to is Restorative Nursing program. When people come off of therapy and are long term care, they go onto restorative. Many facilities also have what is called Park and Dine programs, where residents who are able to are walked into the dining room for meals.
The problem is OP's family member won't cooperate with getting out of bed or attending therapy, and is not eating. OP have you asked for a psychiatry consult? Your mom sounds depressed. Have they given her appetite stimulants? I would bring in whatever you think she will eat, even if it's junk food.
Excellent points.
I recall the times that a friend's mother was in rehab (about age 85). She and her husband made arrangement to attend the rehab sessions every day that Mom/MIL was in rehab. My friend was there every morning for one to two hours and her husband was there every afternoon for one to two hours during the work day.
They both had full time professional jobs so it certainly was not easy for them, but if someone was not there encouraging (pushing, even threatening) Mom/MIL she would just refuse to get out of bed or turn down therapy that day or tell the therapists that she was "too tired to do it that day". Without her daughter and SIL insisting that she do therapy she probably would have been kicked out of the rehab facility within a few days due to non-compliance. BTW, this worked very, very well and she regained a lot of her previous skills.
I have had several friends tell me that their loved one was taken off of rehab (kicked out early) due to refusal behavior.
I recall the times that a friend's mother was in rehab (about age 85). She and her husband made arrangement to attend the rehab sessions every day that Mom/MIL was in rehab. My friend was there every morning for one to two hours and her husband was there every afternoon for one to two hours during the work day.
They both had full time professional jobs so it certainly was not easy for them, but if someone was not there encouraging (pushing, even threatening) Mom/MIL she would just refuse to get out of bed or turn down therapy that day or tell the therapists that she was "too tired to do it that day". Without her daughter and SIL insisting that she do therapy she probably would have been kicked out of the rehab facility within a few days due to non-compliance. BTW, this worked very, very well and she regained a lot of her previous skills.
I have had several friends tell me that their loved one was taken off of rehab (kicked out early) due to refusal behavior.
It sometimes helps to have family members there (although some family members can make it much worse, riding a parent and scolding when we know he is trying his best, or when there's a bad dynamic between them that started long before they got sick). My mom would not do better with me there, lol.
However now because of HIPAA, some rehabs will not let family members attend when there are other patients in the gym due to protecting the privacy of the other patients.
I just want to clarify the Medicare payment a bit. Medicare with a supplemental can pay up to 100 days of rehab (without the supplemental it's 80% from days 21-100) BUT this is an important caveat, the patient has to be making consistent progress weekly. They have to be attending therapy 5 days a week. There has to be documentation that states she is attending therapy and has good potential to achieve her goals. A person who will not cooperate with therapy and is not making progress WILL get cut by Medicare, whether it's day 8 or day 38.
Unless one of you can quit your job and become the 24/7 caretaker, the nursing home is likely going to be the only feasible alternative.
Having witnessed death with my father, my grandmother and an aunt in law, it’s the harsh reality that we humans sometimes have a long drawn out end of life which can be rather horrible. My grandmother was also in her mid 90s, didn’t have diabetes or heart issues or other major health problems until she had a massive stroke at night, was “rescued” and then suffered her last few months in a semi vegetative state, immobile, not able to speak, just able to communicate by squeezing one’s hand. She was able to “squeeze” that she didn’t want to live anymore so this was extremely tragic.
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