Placement Decision

Karl38

At some point I will have to decide about placing my wife in a memory care facility. This will be difficult. I know many of you have already been through this. I would be interested in any information you would be willing to share on how and why you decided on placement.

M1

Hi Karl. In our case, I had put her on a waiting list because she needed 24/7 supervision and I was unable to find home help, much less vaccinated home help, in our rural neighborhood (this was during the pandemic in 2021). She was also completely unwilling to cooperate with home help. The final straw was behavioral disturbance and threats of aggression towards me over driving issues. She had fed 24 cans of food to our two outdoor cats in 3 days, and threatened to come after me with a knife when i wouldn't let her go get more. I would find her wandering the house at 2am wanting to feed the animals. I also had to lock up all my personal possessions because she would go through them (wallet, medications) with no clue that they were mine or that i lived here too.

For many, incontinence is the straw that breaks the camel's back, but that was not the case for us. My partner is now late stage 6 (in MC for two years) but just now starting to have urinary accidents.

Laurie1282

Karl38, I am in the same boat. I have been visiting memory care facilities in my area the past few weeks. I'm thinking my HWA will need placement by the end of the year, but I'm beginning to second guess myself on the timing. Socialization and trained staff in a memory care facility might make a huge difference in my hubby's quality of life. I could then become a wife again instead of a nurse/caregiver. My husband is in control of his bladder and bowels but sleeps late and sits all day watching TV. I am so conflicted on what to do. My son who lives with us to help and I are able to care for him so far, but I don't know what would be best for him. I also need to think of what is best for my son and I without feeling guilty.

SSHarkey

Karla, I haven’t faced this yet, but I do know that my breaking point will probably be the incontinence. How it all plays out will be determined by my long term life policy and Medicaid/Medicare.

Kibbee

I don't think there is any hard and fast answer on this one. Every PWD is different, and every caregiver is faced with their own unique set of challenges and has their own capability to deal with it. My DH is still at home and I don't see that changing in the near future. He can no longer walk, but I have a Hoyer Lift so I can safely and easily move him about. I also have a hospital bed, bed table, wheelchair, and a recliner with lift action. I invested in a wheelchair ramp, and an old but serviceable wheelchair van. DH is double incontinent, but helping him with clean-ups doesn't really bother me that much. Thus far there have been no behavioral problems, and he is easy-going, calm, and is content to spend his days watching TV or listening to music.

If he starts to have agitation, behavioral issues, etc - that may force a change. The other thing that might make me pull the trigger on placement is if I can no longer get good help for in-home respite care. I have been fortunate to have a young man caregiver for the past two years, and he has been great. He is flexible about scheduling, and has been willing to do overnight stays so that I can get away for an occasional short trip with friends. However he will only be available to me for a couple more months. I know that I've been able to cope so well partly because I've had a small amount of freedom to get out and have a break. If that changes in the future - well, I guess I'll see how I do.

TyroneSlothrop

I am going to place DW in June. She is physically fit, not incontinent; but can not be left alone safely. (We have had kitchen near-disasters; she has gotten lost walking in our urban neighborhood; and she has invited strangers into the house who might have intended ill.)

I am still working, from my home office, which requires some travel, and I love my work, and do not want to quit. We have a granddaughter toddler who lives in our neighborhood, and I take care of her about 10 hours a week, giving me great joy. DW can no longer be trusted to behave appropriately with her granddaughter.

I have a 35-hour-per-week companion who comes to the house, and this enables me to do some work and some grandfathering; but the remaining 133 hours are too much for me: my own health is being affected, physical and mental. MC is the strategy I hope will make both our lives easier.

It has been a project to research, and hard to decide, and of course it will not be a dust-off-my-hands solution. LMK if you want more details or to talk one-on-one.

Tyrone

Arrowhead

My wife had incontinence for about 18 months, but she started fighting me over diaper changes and changing her clothes. She would not bathe. She would not let caregivers change her either. She made it difficult for me to take her anywhere, so I always had to find someone to be with her when I was gone. I was totally tied down to her, making it difficult to do other things I needed to do. There are times I wish I had not placed her, but my reasons are selfish. Mainly I want her here because I get lonely after 48 years of marriage. Luckily, she seems to have adjusted well to her new life. She never asks to come home and is usually happy when I'm there. You need to think of what is best for her and for you. If caring for her puts too much strain on you, it is probably time. Still, no one can tell you when the time for placement arrives and only you can make that decision.

Dunc1129

For me, the decision to place came when I was emotionally, physically and spiritually bankrupt and exhausted. I had nothing left in the tank. When I placed her, she took to memory care like a duck in water so I was very fortunate. If you are seriously considering placement, the time has come and more than likely should have been done earlier.

Dio

• Incontinence and hygiene concerns due to his combativeness whenever (every morning, day, night) I needed to change him and on shower days.
• His combativeness rendered my safety at risk.
• On top of that, burnout.

It was an easy decision by then. It took 3 months to find the preferred memory care facility and two months on waitlist. When I got the call that a room was available, I couldn't wait to sign the contract. He acclimated well the first 2 months. Then the aggression and combativeness increased with a vengeance. Thankfully, the facility's director convinced DH's neurologist to add a medication to his regimen and now DH has an 180 degree turnaround. Unbelievable!!!

RickM

This was my third time placing a loved one in MC (both parents and then wife). By the third time I knew of the rule of thumb: "six months before you think you should". On a respite trip I had a premonition that we were there. It turned out about right. A year later she's bed ridden, doesn't communicate, and only downs liquids. I probably could have handled the final care with assistance at home but, to be honest, I couldn't handle the emotional difficulties watching her decline 24/7. At least now I get a break, can still have somewhat of a life, and I enjoy our time together on visits which is on most days. She is walking distance from our home, which makes that easy.

Sad Eyes

My first post. I'm signing the paperwork this morning for my DW of 58 yrs to be placed in MC. She does function pretty good with a lot of prompts. She mostly sits, and stares, doesn't talk unless you ask her questions. Mostly does have control of her bladder. Her biggest issue is the constant auditory hallucinations. I'm so tired of the same questions over and over. Over the past week, there have been a couple of nights, where she can't sleep because of these DEMONS!

We are so blessed to live in a 62 plus community. She will be located one floor below our apartment. I will be downsizing again. My best wishes to everyone going through this tough decision to place their loved one in MC.

PKidd

https://alzconnected.org/discussion/69374/placement-decision

It's really early for me to think about that yet, however, I am an Administrator of an RCF/MC, so I know it could be something down the road I need to face. I work full time and for now he can be home while I work. When the time comes that he is not safe, I'm not sure what I will do. I have 3 1/2 years before I can retire. Safety has to play a huge part in the decision I feel. Their safety and yours, 24/7.

Beachfan

Ironically, it was my kids who really made the decision on placement for DH. During Covid, when we couldn’t do anything or go anywhere, my entire life was devoted to DH’s caregiving, and to me it was no big deal. Once Covid lifted, the kids conspired among themselves, and decided that I had no life. I didn’t go anywhere, I didn’t take the grandkids anywhere, I didn’t attend any of their activities, when they would descend on the house, it was often too much for DH; activities and get together at the kids’ homes were cut short or cancelled altogether, depending on DH’s comfort level. A 30 day respite was planned just to see how it would work out for me and for DH. On the day that we finalized the respite plans, in the parking lot outside the memory care facility, my son announced that “we were not picking Pop up after the 30 day respite”. I was flabbergasted, thinking he was just blowing off steam and we would be back to “normal” after the 30 days. As it turned out, DS was the wiser; DH was oblivious as to where he was, who was caring for him, and where his home actually was. DH resided in the memory care facility for 17 months before passing a year ago. In hindsight, I realize what my kids could see and I couldn’t. DH was well loved and well cared for in the MCF and I was able to get some semblance of life back. I am eternally grateful to my kids for having taken the reins when I couldn’t figure it all out myself. None of this is easy; I am so happy to have reached the other side unscathed, may it be so for all of us.

concerned_sister

Beachfan, your kids certainly sound like a blessing. I think your story would be the classic to illustrate the point that BOTH people in the couple living with dementia are important and their quality of life matters. The path not taken could have been sad if you had given up all the things that bring you joy in those final years.

Bill_2001

A combination of me providing care along with adult day care 3 days per week has worked for me. I have considered placement many times over the last 8 years, but I am still plodding along with this arrangement.

Placement is very personal and depends upon your own ability and willingness to continue care at home. I am a fan of hybrid solutions (a mix of day care, home care, and care from you) that delay placement as long as possible. That said, my dear wife has never been aggressive or a real danger to herself or me. A visit to the doctor may be in order to see if any medications will help your loved one be calmer.

We all have different thresholds of tolerance for care giving. Yours is different from everyone else's. But you can take small steps to make it a bit easier (meds, routines, hybrid solutions, etc.) that may help delay placement.

Blessings, Bill_2001