When is it time for assisted living?

Well, folks thought I should come back with an update. First, mynhubbynwas put on a new medication called Remeron. I called the doc and said he was so anxious and unable to rest during evening hours and this is what he ordered. It has made a huge difference! He is calmer, sundowners is better, and he sleeps later in the morning giving me some morning time alone or I can sleep in after a late night. However, he is still very confused and it hasn't stopped the constant questions, paranoia and suspiciousness during his waking hours. There's just less anxiety at night which is a big improvement.

In the meantime, I was called by the AL that there was another opening. I wasnt expecting a call so soon, it has only been a month since the last one! I was so conflicted once again as what to do especially since my brother died and I had bought a ticket to fly to his memorial services next month, in April. Two days ago I called her and once again, turned down the opening...just couldn't do it!

The owner of the AL is so nice, she offered to keep him for respite care the 6 days I will be gone. This way I'll be able to see how he does there, I'll get a much needed break and if she gets another opening close to that time, she'll hold it for him. It was like a ton of weight fell off that day! So that is my next plan of action...

But...when I went yesterday to pick up the paperwork that needs to be done, there were about 9 people lined around the living room (it's just a big old house) doing nothing! Some were asleep, some just slouched there staring at the floor and none spoke to us. Bob sat down in there but even he wasn't his usual self...he didn't say anything either. I don't feel like the place is appropriate at all. Now I'm hating that I'll leave him there for the 6 days but I have no choice now. I mean, he could be playing ping pong, pool or just some decent conversation. I did t realize so many there were beyond that...

At this point I don't know what I'll do when I get home. All I can say is it's next month and I'll check out more places. This owner has been so nice I do t want to do that but how can I leave him where there do t seem to be any activities. Or maybe I went at a slow time...not sure. But I'm still so confused about what to do and when to do it!

By the way, I did call Area Agency on aging and they wouldnt talk to me if he has more than $2000. He does, but it will be spent down on the facility when he goes in. So they were really no help. I might try them again today and just try to get a list of AL's. The reason I found the current AL is because she will take people right in and accept Mediciad. Most ask for at least a year or two of private pay first which amounts to about $150,000. We just don't have it!

Read through all the comments here again today...they are such a blessing to me! I'll keep you all posted....

Yes, I may run into the problem too of any facility not considering that his the level of care is high enough. The one that did agree said that the amount Medicaid will pay is very low so many of them wouldn't want to accept it. Of course they also get the Social Security except for $100 to be used for his personal needs. I also know that here in Idaho a doctor must be willing to write the admit. So I'll be dependent on the doc doing that too.

It makes it so,hard when the only thing wrong is memory. But people don't realize ( including me!) that dealing with mental issues is very taxing and wearing on the caregiver. Physical problems can be seen and better assessed by health care people.

I think if a nurse would sit and talk with my husband he could pull off a decent conversation for awhile anyway. If things are laid out for him, he can take a shower. If food is put I. Front of him, he can feed himself. He can also use the bathroom, heat coffee in the microwave and shovel snow off the driveway!!

It makes it so hard to get help when people don't really see him at sundown or hear all the nonsensical questions all day and night. So the hardest part may lie ahead of me and that's the result of the evaluations. More hurdles....

Oh wow. See that is exactly my ewaction. It isn't a physical problem, but just as.much bad for you the caregiver as if it were needing constant physical care. I dying to know whether they consider his behavior AL suitable because that's my dad's condition too. .. I outlined all this to a place in am ail, waiting to see what they say

Yes, I will try to use a bit more time in the Adult Day Care. But I think I have already made up my mind to put him in the AL when she calls with another opening. It makes me wish I could be like some of the other caregivers and say that I will keep him till I can't lift him, can't change a diaper or some other difficult task. Instead, I'm caving in because of memory, suspiciousness, paranoia and absolute confusion. Still...when I say these things, it seems I should be able to care for him until physical changes make it impossible.

But I guess I'm not that strong...the constant confusion is becoming too much. I'm having bowel problems (IBS), I've had shingles 3 times in the past two years ( doc didn't give me the shot because he said I should be immune now) and I just feel sorta down most of the time.

Anyway, you say there is some familiarity at home. Not the case here, my husband never realizes that he is at home. Instead, several times a day he asks when we are going home. In fact, often I walk into the bedroom and he has all his clothes on the bed preparing to "leave this place" because we didn't pay for another night. He thinks it's a hotel!

Thanks for your comments and good luck with your dad and if you decide to move him to be near you.

Carol75, thank you for taking the time to explain your situation cause it is exactly what my dad has started to do. For maybe an hour each morning. The rest if the time he sits and makes up stories for the parts of his life he can't remember. Last night we found a movie on netflix that held his attention and it was so nice to see him absorbed in something. It was simple and familiar. Liberty Valance. Also look for anything by Ken Burns about the history he's lived through. Or maybe he is past being able to do that. I have volunteered in a ALZ place and there is so little their minds. Are capable of, I think a stranger would be useless and they spent all the time alone in their head. At least at home, they have a little familiarity. Still, once the caregivers burden surpasses that of the patient, it's time for them to live separately. There is so little available less than an hour from where they live in NJ/PA area I'm thinking to move him 3000 miles away where he can live close to me and I could see him daily. But most of the family is east so don't know what we'll do. Do I understand that you are going to step up help at home from the kids and some time in adult day care?

Thank you Jack, yes we must all take care of ourselves or I'm told we won't last! It does get hard when there so much to do and it basically never ends. I'm doing a lot of research for types of help. I'll keep everyone posted.

Thank you jinx, the $8.50 is doable if I don't use too many hours per month. We both only have social security. I agree with asking my three kids to help when they can. One of my sons will stay with Bob when I go to the support group but that's only 2 hours once a month. They all work 5-6 days a week and I just hate to have them keep their dad on their days off. They do keep asking if there's anything I need or if they can help but I don't push it...you're right, I probably should.

Thanks so much for your comments and suggestions.

My parents moved near me 10 years ago. My dad had a heart attack in July 2015. I had already recognized the signs of dementia in my mom. However, when everything happened, I truly saw what was happening. I was fortunate to have a caregiver stay 8-5 Monday-Friday. The first three months I stayed nights and weekends. My dad has been very little help with keeping mom in line. He keeps saying that mom will only listen to me. I truly became VERY depressed. So, I have since added a security system. I fix dinner M-Th and stay until their 8 PM MEDS. I have an agency that stays till 8 pm and days on sat and Sunday. I still have guilt, however, I could tell that I needed to do something. I am an only child. My children constantly try to get me to put my parents in assisted living. I, like you, am trying to wait until it is last resort. I know it is coming. My mom continues to decline. It truly hurts. Please know..,you have to take care of yourself. You will be of no help if you don't.

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.

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!

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...

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!

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.

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 !!!!!

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.

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.

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!

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...😢

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.

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.

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.

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.

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!

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.

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, 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.

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, 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. 😊

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.)

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?