To Place or Not To Place

Nikonguy

I'm 74 and my wife is 73. She's had Alzheimer's for a few years however, in the past four months, she's been on a downhill slide marked by heightened confusion and forgetfulness. We live in a two-story home but, recently, I had our bed and night tables brought into the dining room after removing the furniture. Now, we have one floor living which has proven to be much better. However, her balance is not good and, being stubborn, she refuses to use a walker. She's fallen several times but, thankfully, she hasn't hurt herself. If she continues to fall, I'm afraid that at some point, she won't be as fortunate. I walk with her whenever possible but sometimes she gets up in the middle of the night to use the bathroom and I don't hear her. She's sleeping more and eating less which are characteristics of this horrific disease. Currently, I have a wonderful companion for her three days per week which allows me to get out for errands and to recharge my batteries.

With that background, I'll get to my question...to place her in a facility or to keep her home. My goal has always been to keep her home as long as possible until she doesn't know me and/or is unable to care for herself in the bathroom. One of the reasons I want to keep her here is our dog. While some people might not understand that, our six pound Toy Poodle and she have an amazing love connection and she looks forward to seeing him each day. In a facility, that wouldn't be possible. Another reason to keep her home is Covid 19. As much as facilities try to protect their patients, it's still occurring and Omicron is only making it worse. There are other reasons, too, but the last that I'll mention is food. I've been blessed with the ability to cook a pretty good meal. I know what she likes and when I tell her what I'm making, she gets excited and enjoys it.

So, I'm wondering what others of you decided, if you have, and what led you to the decisions that you made.

Thank you.

Wilted Daughter

Nikonguy, I don't feel anyone can tell you what is best for your situation, so I'll share my experience as I have struggled with this decision for some time. In assessing all the factors like level care, safety, security, health, and happiness. My mom is prone to fainting/falling, which normally lands her in the hospital, but I can't stop her from doing things she was told not to do. 

1. I looked at a few facilities in the area based on ratings, location. 

2. Next is the COVID factor, I assume that if mom is permanently placed at some point she will get COVID.

3. Then there is the level of care, in our area there is a shortage of nursing home workers. 

4. I assessed security, health, and happiness in one category with health overlapping with COVID. If medicines (health) are involved then it's 60/40 chance the facility will be better at ordering and administering (medicine management). Happiness I rate a 90/10 chance that in the first few months she will not be happy (depending on the level of cognition). After a few months she may adapt if all other needs are satisfied (her wants, other than going home). I have heard some patients pass away within a few months after placement. I can only assume this is based on health status at the time of placement (...no one knows the hour...).

Our house is too large as well but when comparing housing in the area it wasn't worth the hassle of moving, downsizing, etc. during a pandemic. I only think about placement when I'm burnt out which is almost daily. So if you can get extra help in the house (more days/hours), you can take a weekend or day(s) off.  There are adult day cares or respite programs. Also her PCP may be able to give some insight on progression and level of care required. If you can't provide the level of care required then you know the answer (get extra help or consider placement). 

In short, I plan for placement on bad days then put it off to another day and keep doing this until I wake up and know in my heart that today's the day. I believe we will know when its time, no one will have to tell us. It may be different for you than for me, but speaking for myself  I will give all that I have until it doesn't make sense to carry on in the same fashion. 

Hope this helps.

Stuck in the middle

I know a lady who visits nursing homes with her dog and shares him with strangers.  The residents who like dogs love it, and the others of course don't participate.  The point being dogs are not necessarily barred from NH visits.

I placed my mother in NH when they could do a better job of caring for her than I could and will place my wife when I need the help.  It sounds like you are approaching that time.  In your shoes, I would start shopping memory care facilities and getting ready for the time you need them.  Among the questions I would ask is whether my dog would be allowed to accompany me when I visit.

Welcome to the club no one wants to join.

katie louise

Everyone has to do what is right for them.  I'll share my recent experience.  I researched extensively to find the best facility I could and was lucky enough to find a small, dedicated to AZ and dementia facility that was close to ideal.  My DH began his journey into dementia 15 years ago.  He seemed to get worse rapidly lately.  I had a companion five days a week, but he still seemed lonely to me.  I decided that admitting him to a facility would give him lots of people to be around and lots of activity every day.  I took him there on a Monday....and brought him home the following Friday.  Not because of the facility, but because of me.  He may have been ready, but I was not.  I was in a horrible place all week.  I have since worked out the not sleeping issue and he sleeps 12 hours a night now.  He used to get up at night and flush the toilet three times per trip which sounded like Niagara Falls in the middle of the night.  I solved that problem too.  In looking back, I think I tended to discount him because he couldn't communicate well.  I have since learned to stop and look at him and listen to what he is trying to say.  It doesn't matter if I figure it out.  What seems to be important is that I listen to him.  There are lots of challenges everyday, but I'm working through them and coming up with some solutions for most of them that I wished I had thought about a couple of years ago.  I am sure he will eventually come to the place where I have to admit him to a facility because I won't be able to physically handle him.  Long story short...I thought I was ready, but I wasn't.  I only learned that by doing it and realizing I had to keep him home for now. I will be better prepared to make that decision in the future.

Nikonguy

Wilted Daughter,

Thanks so much for your very thorough and compassionate reply. It has given me volumes to consider and I'm very appreciative.

Nikonguy

Stuck In The Middle,

Thanks so much for your reply. I should have been more specific about the relationship that my wife has with our dog. In the recent past, she's been to the hospital several times and until she came home, our dog wimpered and howled trying to figure out where she was. If dogs are allowed at the facility I've found, I think I'd be very reluctant to bring him because when it's time to leave, both he and my wife will probably go berzerk.

Nikonguy

Katie Louise,

I truly appreciate your response and I completely understand your discussion about listening. Most of the time, my wife has difficulty completing sentences and in the beginning, I tried to help. I believe that added to her frustration. Now, I listen intently and always look at her so she knows I'm listening. Sometimes she's able to finish and sometimes she's not. But, I believe that by giving her my undivided attention, she knows I'm there and I care. For the time being, I'm looking into more help at home so I can keep her here.

DHVT

I am amazed (maybe envious?) that no one has mentioned the main issue for us: money! I'm working with a financial planner to make the best long-term decisions, but while I once felt we were well-off, it's hard to avoid a fear of poverty in the long-term future. 

I also find that the difference in cost between an AL/MC place that I'd rate an 8 and one I'd rate a 10 is fairly trivial compared to the thousands of dollars a month that either would cost.

Sorry to add my worry here, but it's one of the many things I lose sleep over.

NylaBlue

DHVT,

You are not alone in being concerned about cost. I suspect many LOs with dementia would be placed sooner were it not for the crushing cost. When my husband was diagnosed, I privately decided I would care for him at home until he could no longer recognize me, but now I realize he might be in memory care for years after that point and my mother is also showing signs of dementia. I could easily exhaust all savings with nothing left over for my remaining years. I feel guilty for thinking this way, but it’s hard enough to know I will spend my last years alone; to think I may spend those years in poverty frightens me more than I can express.

Stuck in the middle

DVHT and Nylablue, you really need to see a CELA to find out what can be done about keeping money for you when your LO goes to memory care.  It was a real eye opener for me.  If nothing else, you will sleep better knowing what lies ahead.  Don't wait until you have spent your money.

Nikonguy

DHVT,

Cost is huge, especially for us. Quite honestly, if my wife doesn't qualify for Medicaid, which I believe she will, placement becomes a non-issue. A reasonably decent facility that I researched around here is $14,000 per month. Thanks for including this critical ingredient in making a decision.

Nikonguy

Nyla Blue,

I'm pretty certain that any of those on this thread who are looking at massive memory care expenses and, who aren't independently wealthy, are, indeed, very frightened about having enough money. However, as I mentioned in another response, Medicaid is there to help folks like us. The application is somewhat arduous but there are people and companies who specialize in their preparation.

Nikonguy

Stuck In The Middle,

Excellent suggestion!!

BrooklyntoCA

I can share my own experience caring for my 95 year old mother who has dementia, not sure which stage exactly. Anyway, she has been living for 10 years in an independent retirement community in her own apartment. The place is fortunate in that there are some excellent caregivers who people hire - not employed by her community, but they come to caregive there. For example, I am very fortunate that the Mon-Fri caregiver checks in at 7 am to see if my mother is still in bed or on the floor (happened 3 time, no injuries thank God). Then about 9:20 to get her up, dressed, bathed, and for breakfast. Again at 1:30 to help with lunch. And at 5:30 to help with dinner and to bed, then finally at 7 pm for final check. (Meals are brought to her apartment.) Compared to assisted living, the price is a total "bargain." This caregiver used to be a nurse in the Philippines so she is well equipped. Oh, she also administers medications and occasionally is able to accompany us to doctors' visits though that is getting increasingly difficult due to mobility issues. A relative of hers covers Sat and Sun.

All that is to say, that I have considered AL but honestly - would that be any better? My mother could fall in an AL apartment just as easily as where she now lives. If there were other problems, she would have to remember to call for help. Given her level of care now - and I supplement the paid caregivers with a lot of other things, not least keeping her company when she's alert - and given than she's in a familiar environment and has friends drop in from time to time - well, as someone I spoke with said, if she's safe and comfortable where she is, why move her?

I know she will eventually decline to where she may not get out of bed or eat much. I think at that point I would call in hospice at home to supplement the other caregiving. But in her current situation, I do not see the point of relocating her (with all the greatly added expense of AL). She also has some fine doctors that I'm constantly in contact with.

Hope some of that was helpful!