When is it time for assisted living?

Hi Carol
My situation was very different to yours, as I was taking care of my mum full time. She didn't have memory problems, mainly just general age-related decline, but I too found myself more or less housebound. Mum worried if I went out in case something happened - fire, flood, burglary, anything really. Coupled with a series of falls, this meant that gradually, and to be honest probably without my noticing, I began to cut myself off. I was stressed, resentful, worn down.
Mum moved into an AL facility in September '15. It was hard at first, for both of us, and I visited every day for a couple of months. But now I go once or twice a week. Mum loves it. She's got a better life than when she was here, there's so much going on in the facility, and (very slowly) so have I.
Before, I was so worn down with day to day stuff for Mum that we never did the fun things. Now we do.
Hope that helps a little

You have done so much already. As a 63 yr old nurse, I empathize with those who have given their lives to care giving 24/7. My job ends at my shift. Yours doesn't. You have been committed to his well being for so long that it's difficult to make such a decision. But you have to, dear, for your sanity. We had a saying when I was with EMS, "you have to ensure your own safety/wellbeing before you can help others".
Try it out for a time, maybe 6 months, and make a plan to review the pros / cons afterwards. Expect ups and downs at the beginning, but with time, you will have a better understanding. God bless

I am very new to this.....actually my first post and I am pretty much in the same situation except I am 78 and my husband is 99 and confused - about the same as yours; mobile with total awareness most of the time. He was hospitalized in Nov. with a severe UTI and they put him in restraints as he tried to remove the Foley. The more they tried to restrain him the more violent he became. Just human nature for a formerly strong, proud person. It broke my heart to hear him begging to be released and I "kind of" vowed then that I could not put him in a NH-I will care for him at home as long as I possibly can. For me he will have to be much, much, much worse before I would take that step so I share your thoughts and concerns.

Carol, the time to place him is now. The reason? It's affected your health. This is not a competition with others you may know who are caring for gheir elders. Perhaps they are too selfish to give their spouse the gift of a good life at a wellrun AL. Do it now!

I sympathize with how conflicted you feel. Can you perhaps call the Alzheimer's Association near you and get info for a support group near you? What you are dealing with is extremely all consuming. It is a mental stress and can be bad for your health. You can be a calmer, less resentful and better wife if you are not dealing with this 24/7. But you need support of others. I think you considering this move is your gut instinct telling you something.

Carol I suggest finding a location with the memory care unit. It makes all the difference in the world for you and for your husband. It's not just the point of you having a life, but also it's a point of getting help to manage his life. A facility that truly knows how to manage dementia is an extended family. Your time with him will be more valuable and less stressful for both of you. Beginning it will be extremely hard but just rely on resources available.

Also if his MoCa score is too low, he may not be accepted into AL but may need to go into memory care instead.

Carol, my aunt couldn't bear the thought of placing my uncle. She yhought he'd be lost in memory care. She waited until her children forced the issue after they found out he was beating her black and blue to get the house keys from her.

She finally placed him in a lovely memory care place where he thrived. Dadly, she died of a massive heart attack not long after she placed him. That's my cautionary tale.

I am at the exact spot as you. Except my husband and I are caring for my father in his home. it's exhausting and we have no life of our own. In my support group I've watched two wives both about your age finally make the plunge to place their husbands in good Memory care/AL units. They were heart broken at first but the transformation in them has been amazing. Their anxiety and helplessness has decreased enormously and they have come alive again. They are still devoted to their husbands and monitor the quality of their care but they are not so depleted by sorrow and despair. I know this is a very hard thing to do. Perhaps if you ask yourself if the situation was reversed what you would want your husband to do?

Carol, after eight years, I think it's time. My husband has a progressive neurological disorder and was falling a lot. When one of his falls knocked me down, I knew it was time. I didn't break any bones but did have a mild concussion. I had been looking at assisted living places, thinking at first of respite care. With the help of one of my daughters, we moved him in June. Since then, he has been moved into the memory care area, not because of his mind so much as because his falls were increasing in frequency and he would get more supervision there. While I can't say I've gotten my life back yet, I have found a renewed interest in food. The knot in the pit of my stomach has gone as has the lump in my throat. I had thought I was coping with the stress rather well, but apparently not. I will be 80 next June. It is a relief not to live in the suspense of not knowing when the next crisis will come, the next fall in a public place with concerned citizens who want to call 911, the next trip to the ER to be stitched up, the next surreal event. The staff where he is are cheerful and capable, and the director tries to find things for him to do in accord with his interests. (That's not easy since all his focus since retirement was on sailing and racing. Videos of America's Cup races get his attention.)

Carol, my heart hurts for you. Please get involved in a support group. My doctors office offered one. I went and it TRULY lifted my spirits. Just the other day I attended another group. It really helps to hear how others are handling issues. Many times I get good ideas. I know it is normal to have guilt. However, in the groups I attend they continuously remind us that we need to take care of ourselves. Please know you will be of no help to him if you let yourself get worn down. A move could easily restore life to both of you. 😊

I can empathize with your situation. My husband has been diagnosed since 2009, but I suspected it before that. Knowing what I know as a nurse, I've already made the decision I will care for him until I cannot lift him. He too is pretty healthy and cares for himself with prompting. I have a plan A, B, & C in place when and if the time comes, but you and you alone know how you feel. If you absolutely cannot continue to care for him as it would negatively impact your health, then place him in the care of professionals. Trust me, with his memory he will soon not recognize you are not present and he will continue to decline. Your visits will be met with indifference once he no longer recognizes you and then you will feel cheated he doesn't. Know this disease is robbing two people of a life. Tell your family to stop bugging you and if your friend is really a friend, then she will allow you to make your own decision. Best wishes!

Carol, I can identify with your reluctance at placing your husband in an Assisted Living facility. I struggle with the same behaviours with my mom - severe confusion, anxiety and anger when I go out, thinking there's a man in her bedroom and unable to grasp the fact of dad's death, repeating the same questions and stories, taking two lots of meat out of the freezer for dinner almost 20 hours away, and being just about stone deaf. Its effect on her personality also makes it difficult to like her. I, too, feel resentful and impatient, especially when I have three other siblings who do little to nothing. I struggle to keep a part time, very low paying job and self employment which is not financially self sustaining.

Many people have expressed their concern and strongly recommended placing mom in a nursing home. I know, logically, it makes sense, but emotionally I am not there yet. My dad was in a nursing home for 10 years. For him it was necessary after a head injury causing bleeding on the brain and an iliostomy for bowel cancer (he had hand tremors and couldn't care for himself), plus a history of falls. During that time mom developed Alzheimer's. The nursing home was one and a half hours one way by public transit. It was so hard to see dad going through so much emotional pain from being there; he withdrew into his room, didn't partake in any activities. The staff were great, but the only time he perked up was when I visited. He died last August, about a year and a half ago. During his last days, I was run ragged and stressed out trying to deal with mom's dementia (anger and anxiety and forgetting where I had gone and probably jealousy because I was with dad and not her) and being there with dad and watching him die, and trying to keep up with a part time job and what little business I did get.

Despite how draining it is for me to care for mom, it is still her decision because she has not been assessed for mental incompetence. However, even if she were, I could not do that to her. Besides which, whatever money we have saved up would be depleted and, as selfish as it sounds, I would end up in poverty in my old age. But apart from the money and legalities, it is a sense of familial love and duty. That does not mean that I don't set limits or get angry and impatient with mom. I will not give up my meager part time job even if she refuses respite care, which was tailored to her preferences (friendly visiting, no help with housekeeping or personal care, only two days a week). I will also not give up going to mass every Sunday. However, I am soon going to have to override her demands and have someone come in again, because she is no longer able to handle even an hour or two of me away from the home. I found as, with dad, just as I felt bombarded on all sides and something has to give, something usually happens. Mom came into my bed in the very early hours of the morning the other night and said she was dying. She's had that feeling before. I believe she is beginning the process. I don't want my last memories being her look of abandonment and hurt and despair over being placed in a home.

I think the biggest challenge in this situation is retaining a sense of self, setting limits, taking time out and maintaining connection to the outside world, albeit "virtually" - phone, Internet.

Can you bring in some help so that you have a break for several hours a few times a week? There are also Day centers where he could go from 9-3 ( or so) several days a week to give you a break and some free time to do things for yourself. It is a good way to transition to having assistance without actually going someplace permanently. There are assisted living facilities that have both memory care and independent apartments. Can you go to the same place so that you can visit him everyday and have meals together?
That is often a good compromise for couples who don't want to be separated but when care needs are greater than the caregiver can meet on their own.
Good Luck

Carol, for your own health, take the next room/bed available. If the facility will agree it could be a six month trial. If it is a good fit for you both, it maybe very difficult for you both for the first few weeks, but give it a trial period. It's temporary, see how he does. See if it helps you feel better. You know how the disease will progress. Best of luck, I hope we get an update.

Oh gosh, what a blessing today. I've checked a few times and I thought no one was answering my post...but today I find 15 responses! Thanks you all so much for your stories, answers and varied responses to my question.
Today is our anniversary of 58 years, but it means nothing...I'm so sad and I needed to read all the comments here.

As I read, I see some of the stories are of people much worse off than my husband and I see this as my greatest problem. He's bad when it comes to confusion, suspiciousness and paranoia...but not that bad. Gosh, I have no idea what I'm looking for. Maybe incontenence, anger, hitting or something...anything that makes it impossible for me. But he is sweet and even apologetic when he knows he's getting on my nerves. He makes me go outside and all through the garage to check on "those guys who are stealing the car" with him. I try to convince him all is okay but it only lasts for a few seconds and he's back at it again. Or on to something else like crawling under the bed to hide things, etc.

As some have suggested, I do try to get out to a support group once a month. I haven't been for three months because of the weather (snowy here in Idaho). My son will watch him the three hours I'm gone. But generally my kids are at work or with families and I don't want them to have to just come and sit here with him. They have their lives to live.

Also, I take him to Adult Day Care when I have errands but it's $8.50 an hour and it adds up quickly and we just can't afford that much so he's only been there a few times over the past year. Mostly I take him with me to get my hair done, doctors appointments and basically everywhere.

When we've visited AL's he seems to like it. He's very friendly and talks to the people. He's outgoing and I often think he'd be better off to have the interaction rather than walking around the house everyday so confused.

Sorry...I just ramble on about it and still have no idea how he could manage without me. He even stands outside the bathroom door when I pee and asks me where I am. But on the other hand, he laughs a lot, talks to people in the grocery store and has them laughing. They have no idea there is something wrong with him. We went out to eat yesterday with our friends and he was fine except he can't make sense of the menu. I order for him...but the waitress had no idea.

On days like yesterday I figure I'll try it another year...I just don't know.

But I so appreciate all these responses...it has helped me so much today!

My 85 yr dem/alz husband is in 8th yr of desease. I read 36 hr day bk, on computer "understanding the dementia experence" free & 28 pgs if you print it. Really good. He used to hide things etc but not too bad now. I felt socially out of it as i now look back as i hire a caregiver or use day care a lot. The first time i felt just plain FREE. He got used to day care even liked the people as nothing was expected of him. Now he has all functions going sleeps a lot, eats less, i say one thing when thats done name next. If i am calm he is. I always agree w him because in 5 seconds he wont remember so keeps him calm. I actually enjoy a day alone w him when i have help 5 days. I go to great support group which includes widows, wives have husb. In memory care & at home. All dementia forms. Keep ahead of what is to come but dont worry about it but for me am not so devistated when that state comes & hear my friends have gone down same path knowing God has a plan & all this will end being in a better place. Also ck Vets Aid & Assistance for down the road. Wish i had learned some of these lessons 61 yr ago when we were married. He is on anti depresent chgd him from lion to lamb.

Is your husband a vet? If so, he should qualify for the VA's Aid and Attendance program, which would provide about $1600/mo to help with his care, e.g. day care expenses. Also, look into your local federal PACE (Program for All-inclusive Care for the Elderly) , often run by a nonprofit, that will assist with keeping your husband at home. your local Area Agency on Aging will be able to put you in touch (assuming Idaho has one in your area). My impression of your consternation is that you will be very guilt ridden if you do place your husband in an AL, however, this is normal. Instead of the suggested six month trial, you could try it for a much shorter timeframe. (Insist on a month to month agreement.) This would lessen the guilt if you knew you could end the arrangement with less of a financial impact. In any case, make sure that the facility's director is aware of each of the individual residents living in the AL. As a retired administrator of long term care facilities, I can assure you that this is a primary indicator of the quality of the staff's attention to the residents. May god bless.

Thanks again, no my husband is not a vet but as suggested I will check with our area agency on aging...hadn't thought of them for help.

These comments are priceless, I'm so glad to have found people who are going through the same type of problem.

I'll keep everyone updated and let you know what I find at the area agency.

He also sometimes thinks I'm his sister or asks me what my name is or can we get married [61 yrs], but tells most people I'm his sweetheart & tells me more than he ever did he loves me.

Yes, mlface, my husband doesn't always know me. And he asks me all the time how long we've been married or ask me "if" I'm married. Then he'll say he thinks he did get married but that his wife died. He says all this looking right me! These are the bad days...😢

The time for AL/Memory Care is both when it's not safe for either him or you to have him at home, and when it's affecting your own health. If your health fails, you cannot be there for him. I've dealt with this for both my parents so far. Hard decisions. My criteria...we tried keeping both in the home together, as they expressed wishing to have happen. We added caregivers. I did have POA invoked so I could use their money for their care. When that did not work any longer due to Dad being aggressive towards Mom, we moved Dad to Memory Care. Kept Mom home as she wished to be, but over time, her Alzheimer's got worse, and she was not safe at home...not eating right, unable to make decisions, accidents driving etc...so then I resumed caregivers in the home with her, added cameras to the alarm system and got her a panic necklace. By this time, there was no more family left in their town. I didn't want to force her to AL in a town with no family, but didn't want to move her away from Dad either, since they visited daily. So we waited until Dad passed away...kept things the same for a few months of grieving time, and finally, with their lawyer's help, convinced Mom that it was time to sell the home and move into AL in my town. There are other choices for you....you could add caregivers coming in to help you get some break time or take over some of the physical care; you could find day care for him and have him go there, but still be home with you in the evenings and nights; you could consider selling your home, and both of you moving into a full service facility, so that you could be in Independent Living in your own apartment and he could be in Memory Care. In that plan, most places would let your hubby come out and be with you as much as you wanted him...eat meals together, do some activities together or visit with friends and relatives together, for example, but when you needed your time, he would go back in, and would sleep there, so you had your own rest. That type of planning enables you to move from independent to assisted living as your own health might change too, without having to find a whole new place to live or go through all this decision making yet another time down the road. If you have the resources, you might want to consult with an eldercare attorney to help you look at all the options and also to get your assets into the right kind of trust to assure that plans are in place to safeguard your own half of your resources, should your husband need placement and have to eventually apply for Medicaid. There's lots to consider about safeguarding your money and assets, when one of you is ill like this. And eldercare attorney can also help you access any other kinds of benefits you are entitled to or he is entitled to....and plan the process out. Good luck to you. I've been helping my parents for almost 4 years now, and it's been very hard and time consuming!

Thanks so much Joannes, I will consider much of what you've said. I don't know much about having people in the home. Most of the folks at the support group says they will rob you blind unless you know them.

I did find another option that you mentioned and that's selling my house and moving into a facility that has independent and AL. I found one that might work except it's not memory care and I'm not sure that would work for very long. It's evident I have more homework to do. Thanks for your helpful answers.

This is tough--especially since you care AND I watched my sig-other go thru same agony with BOTH his parents! I was angry, burned-out, depressed, and exhausted! And I lived 1/2 hour away....he was there 24/7 virtually. Finally the in-home nursing care folks discharged them without even letting us know. I had to call them to find out--AND it was for the best I can say that now. When we are TOO CLOSE it can be hard to make a change--even if it is for the better! It wasn't my call--I knew that. I HAD to start making small changes for ME.......not go out there so often because when I did I almost always stayed too long......or over-worked. Say NO when I just couldn't bring myself to help when he asked me too because I knew I would be mad at myself later. It helps me to ask myself "what CAN I do"........rather than go over and over in my mind what I DON'T want to do......Hope this helps.

BTW.......forgot to say......they are both in same room in same nursing home soon after.......they have so much dementia they don't even notice they aren't home anymore.......and BOTH look much happier and content. They are eating better......given baths regularly......fun to connect with when they are alert enuf! I am so grateful to have my LIFT back! My SIG-OTHER is probably more lost than they are........because he didn't realize HOW MUCH THIS was affecting him. He has pain and aches he didn't realize he had.......because he was putting so much focus on THEM. AND.....I'm having to use the same tool NOW as I DID already before........what CAN I DO in this situation.......and what is NOT WORKING for me?.......I get to really LEARN this one lesson...:-) some more !!!!!

Keeping him at home, with you, cooped up in the house together for who knows how many more months or years, is going to neither of you a bit of good. He is not going to recover, he will eventually get worse even though he seems pretty healthy now. YOUR health is starting to decline and will get worse faster than his if you keep this up. I say, bite the bullet and find a suitable place for your husband now. It will be difficult for the both of you at first, but after he adjusts (and he will!) and you have some freedom and relief from stress, both your lives will be improved. Chances are he will do fine there, and he will adapt to his new environment, hardly remembering his 'old life'. (I speak from my personal experience with two relatives who have dementia and went into facilities. They are receiving proper care and don't even speak about their former homes any more, they've forgotten and have new friends and activities to keep them occupied. Perhaps they are lucky? ) You can visit him as much as you want, and you will feel as if a thousand pound weight is off of you. Please read the answers given here. You have done a lot for a long time, you are getting older yourself, and your husband will decline as time goes by. You deserve a little time to live, too.

Thanks again for some good advice. I'm hearing so many tell me it will be better for me when he's in a home. I just have to convince myself now but I do hear what you all are saying.

Like I said, today is our 58th anniversary but he's been asking if I "paid for this room?" He has no idea most of the time that this is our home. We've only been here since June of 2014. We had a small 10 acre farm and I was afraid I'd be stuck out there when he got worse. But it hasn't helped him any, moving him to a different house in the middle of this terrible disease.

Anyway, I'm reading and taking to heart everything you all have offered to help. I will research places where I might be able to live. I'm checking with area agency on aging tomorrow to see what they say.

I'm feeling in a fog though and this is so overwhelming. I want to make the right choice. I'm not a drama queen either...😉 I want to have a plan and try to find all the pitfalls along the way. I'm doing my homework tomorrow by doing phone calls plus I'm getting my taxes done. More to come...thanks all!

Also, my heart goes out to those who have shared their experiences. So many of us in hard, almost impossible situations. It makes me so sad that latter years have to be spent with such stress and turmoil. I guess it's just part of life. Bless you all for sharing...

As a caregiver spouse and a parent of a young adult, I advise you to ask more of your children. It will make them more content to know that they stepped up to help. I'm not talking about a major commitment, but a regular reasonable action to make your life better and to "force" them to come to terms with what is happening.

Ask each child to give you a morning or afternoon once a month, so you can go out, see a friend, or just sleep. (Ask for every other week, settle for every other month!) Of course this would depend on their lives and personalities. But just as you once "made" them brush their teeth or say their prayers, at least try to get them to do a part, as a life lesson for them and the grandkids.

I did almost everything that was asked for my parents, but looking back, i wish I had done even more!

Financial question: If you can't afford day care, how will you afford AL/memory care? $8.50 an hour for a day center sounds like a lot, but it's not 24/7. I have no idea what your money situation is. I just know for us older folks, the price tag is a shock, but maybe we can actually afford it.

It doesn't matter how many home-care people are crooks, as long as you find someone who isn't a crook. I spent a long time looking for the right man to marry, kissing a lot of frogs along the way. Looking for the right "helper" is a similar challenge, but if you are picky but flexible, you can find a good person.

Hire someone for only one or two visits, so you don't have to fire them if you don't like them. Stay in the house but out of the way for the first visit. If they give you a creepy feeling, trust your feeling and don't ask them back. Did you say Idaho? Can't you find a nice Mormon or Christian (or other religious person)? Wouldn't they be less likely to steal or be mean? At least give it a try or two. Getting someone to come in might be a huge improvement for both of you.

I am biased here, because I am maybe 3 or4 years behind you, and I expect to be healthy and interested in doing stuff for myself until I am housebound myself. I hate the prospect of having to give up ALL of my own desires and fun. I'm willing to give up a lot, but not ALL.

Good luck and blessings to you.