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star42 Asked June 2012

I've pretty much decided to send my husband to assisted living; he has dementia. Is this the right decision?

I've been told I will not be able to handle him at home, but today when I saw him for 1 1/2 hrs. he seemed almost normal. What do I do. The only hint that was not normal was his remark that a lawn chair we bought for approx. $50, he insisted cost $275.00. I'm afraid of making the wrong decision re: assisted living and feel so guilty, especially when he acts almost normal.

ADCaregivers Nov 2015
I am sure that many will find my answer crass and possibly cold hearted. But if you are finding him increasingly hard to handle, then research your options. You might want to have him evaluated at a memory clinic or major research center for ALZ. An outside opinion could help you to make a better-informed decision. For example, a prospective client refused to accept that her husband needed full-time care. But when Georgetown University's memory clinic told her that husband needed care during the day, she found a caregiver quickly.
I think of this decision, as hard as it is, similar to getting a divorce. The person who leaves is guilt-stricken and ponders the decision for a long, long time, even years. But once they make a decision and act on their decision, they feel enormous relief because they left or moved out. They felt freedom from taking action. They were no longer feeling weighed down by the pondering.
I perceive that placing a spouse in a facility as a type of divorce because it changes the pattern of the marriage. This action forces one to grasp the reality of this disease, as incredibly painful as it is. However, you might feel relief from the constant responsibility of daily caring.
This is a hard, hard decision.

SallySee Nov 2015
There is an old saying "No decision IS a decision." If you aren't sure, then no, don't send him. You'll know in your heart when the time is right. It might break your heart, but it will be the right thing to do.

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Livelifefull Nov 2015
Go with your gut feelings, heart, but most importantly, read everyone of the answers here. Some you will agree with, some you will not. Agingcare.com is a respite for almost everyone of us that is a paid or unpaid caregiver. It is not easy.

We felt with my mother "no way, we are a family that will never put her in assisted living" She is in 4th stage Alzheimer's or last stage. Well, we put her in 3 years ago, because yes she fought us tooth and nail at the beginning, but this became her city, a large city with all of these elevators to go up etc.

when I think of did I do the right thing, there is only 1,000 ways to do it, and your heart, soul, and talking with many people, will assist in that. Do not isolate yourself, and make sure you are not doing this alone. I do not state this to scare you, but it is a very hard disease and any one of us, in the middle of the night whenever will type to you etc.
Good luck to you. :-}

ynatom Nov 2015
My husband has recently been diagnosed with vascular dementia, over a month. Prior to this, I was ready to let go, listed the house and just waited to file divorse becuase there was so much fighting, and agression from his side. Later I know that he has a vascular dementia due to micro strokes. I now learn how to go with the flow, not to argue even when I know things are not true or real. My make issue is that he's is so delutional and have problem sleeping. He is so fixated on the women on line and he thinks that they're around the house. Sometimes he goes up and down the house looking for her/them. His sleeping pattern is getting worse (sleeps around 2 am, to 4 am and today at 10am the following day). I have sleepless nights too checking on him when he goes out of the house. Does anybody have experience this kind of issue and how to deal with him? His meds doesn't seems to work lately (he is fighting his sleepiness). Help!

JaneB Jun 2012
Dementia is so tricky. They can be normal one moment and so not normal the next. And neither moment is predictable. It's the unpredictability that makes some sort of "minder" so critical. My dad was normal one minute and then wanting to slice up a table the next, and it made perfect sense to him. He couldn't have damaged the table much but really have hurt himself, even as weak as he was.

My dad is In his final days. The turn came fast. He has lived with us for ten months and we've had 12 hour a day care for the last six weeks. I am exhausted from nights of listening for the next unpredictable thung. Iwish I'd gotten help so much earlier. And I wish we had Insisted onAL instead of saying, "sure, live here." but I kept looking for the proof that he was "normal," rather than understanding how every moment was a gamble.
No easy answer. But know that whatever THIS moment feels like, it's no predictor of the next moment. AL 24 hours, of some sort, in your home or not, is the best defense against unpredictability. Good luck!

star42 Jun 2012
Thanks for your reply; however, what I'm basing this decision on is the fact that the doctor is concerned with him being home and the social worker and therapists in two different facilities stated he should not ever be alone, they "strongly recommend" assisted living. They continue to tell me if he comes home that I will get sick from all of the physical and mental stress. The doctor also states that he can no longer handle any financial or legal matters and he absolutely can not drive. What's making me question this is the fact that he seems somewhat "normal" at times.

ponton Jun 2012
My mom has dementia and is 82yrs old and able to live on her own. We do see her often and check the house but seems to be fine to live alone. Just every situation is different. there are people that live alone with dementia, if you think there able to. So I would not necessary put a person in assisted living unless unable to function at home. I understand your delema.

Stephan Jun 2012
You are doing the best you can, and it sounds like you are doing it diligently with intelligence, love and grace.

If it makes you feel any better, imagine how he would handle this if you had dementia. Would he be in denial or would he take control and make the best decisions he could using the best medical advice he could get?

It is so hard to be the one to make these decisions, and you are stepping up and doing it. If you can, perhaps it would be helpful to explain to these difficult family members that you understand their fears and grief, but that you are his wife, it is your decision to make, and you need their respect, love and support. In time they may grow to recognize your courage and integrity, and acknowledge that you are doing the most loving thing to insure he receives the best possible care.

star42 Jun 2012
I don't think he knows there's anything wrong mentally; if so, he covers it very well. He thinks he's going to assisted living, will have physical therapy and go home. I've been advised by the social worker to not discuss this in depth at this time, to give him time to adjust to the environment..........I don't know what to do. He's off and on. Sometimes he seems very alert, other times he's way off on this thinking. I'm just bewildered, even though the decision has been made, I'm still struggling, and having some family members convinced that he will get better and should go home is so frustrating, when I've been told by the professionals experienced with dementia that this is the best he will be, it will progress and it will get worse, not better. These family members refuse to believe me, think I'm insane, pessimistic when all I'm doing is relaying the msg. regarding this cruel disease. This just adds to my guilt and causes me to doubt this decision which was not made lightly.

Stephan Jun 2012
So difficult.

If he's almost normal, is this something you can discuss with him? Does he understand that he is impaired? What would he like to do?

SCHLUEDE Jun 2012
Dealing with dementia with my Mom. there are good days and bad days. We moved her from her indenpendent living apartment i feel just at the right time to assisted living., she was still with it enough to learn her way around the ALF. If we tried to move her today i don't think she would ever leave her room as she could not remember where anything is. sometimes better to move a person with beginning dementia so they can get acclimatized before the disease progresses and they are really lost then. I also heartlily agree. You can never win an argument with someone with dementia so don't even try-just change the subject. you don't have to agree with something that is not correct but just redicrect the conversation to another topic. Hope this helps at least a little. Dementia is a hard one to handle-it gets you down watching someone you love go away by inches-I think in the long run much harder than losing them to cancer or a heart attack that is sudden. My prayers are with you.,

IsntEasy Jun 2012
If your husband is willing to (or will be agreeable to) moving to an AL and you can afford his care there and have enough to live on yourself, you're making a great decision. It's true that people with dementia have lucid days, sometimes lots of them, and you'll be able to enjoy them with him no matter where he lives. Dementia is progressive. The good days and even good hours will become fewer and farther between. The trouble with choosing when is the 'right' time to make the move to AL is that, as the disease progresses, your husband may become less agreeable to moving and will certainly be more difficult for you to manage his care at home. I've seen so many instances where the spouse of the patient is the one whose health truly suffers from dementia. Adult children tend to get wrapped up in the needs of the parent with the diagnosis and fail to recognize the damage being suffered by the spouse who's bearing the brunt of the care (and often has health needs of their own that need tending). In making the decision, you can't pick a perfect time and it's better to do it too early than too late. Don't neglect your own well being in the decision-making process.

NancyH Jun 2012
skid70, I think it's a knee jerk reaction when you hear bad news, to panic and automatically see the worse. Now when it comes to dementia/alz, the worse is probably 'normal' eventually, but there are degrees of that disease too. Also, some people just are NOT cut out to be a caregiver for years, they just can't do it physically and mentally. No harm no foul as far as I'm concerned on that point. So you've got to ask yourself some questions I think. 'Am I in panic mode wanting to prematurely put my husband somewhere?' ' Would I be able to care for him at home until he dies of this disease?' I think once you've asked yourself those questions, you'll better be able to make a guilt free decision about his and your future. Sorry about your hubby.

N1K2R3 Jun 2012
When in doubt.......don't.

SelfishSiblings Jun 2012
Skid - I agree with Waddle. Use this time to do the research. You will save a lot of time and frustration down the road when he needs placement. Deciding whether or not he goes in a home or you keep him at home is an entirely personal decision. Some of us here have the tools ~ like Linda! (both physically and mentally), to be able to manage them at home. Some of us do not. It's not right or wrong; it's what's right for you and your family.

Do some research now; it may help you make that decision much more clear when the facts are in hand.

xo
-SS

waddle1 Jun 2012
"Is this the right decision?" "I'm afraid of making the wrong decision."

Sounds to me like you aren't sure and it maybe premature for you to place him in a facility at this time. I think the time will come when you will have had enough or can't 'do it' anymore...then you will know for sure. I think there will come the time when you will be driven to seek out alternatives. But, you're not there yet and that is why doubt is coming to the surface. jeannegibbs' post above raises some very good issues and questions. Use this time to prepare for what is on the horizon. Visit facilities, ask questions, do research and prepare yourself mentally for this major crossroads in your life. Then when the time comes you will feel more confident about your decision (knowing it's the right thing to do for him and you) and can better approach these hurdles.

God bless you and your husband.

jeannegibbs Jun 2012
It is probably true that eventually you will not be able to keep him at home. Knowing when "eventually" has arrived is the tough part.

I've accepted that my husband may need placement in a skilled nursing facility some day. Now he needs assisted living -- and that is what he has right here with me. We have a PCA come in 32 hours a week, plus cleaning help, plus a daughter who handles his pills. I do the rest. We get along fine for the most part.

How long has your husband had dementia? What are the most difficult aspects of taking care of him? Would additional in-home help allow you to keep him home a while longer? Do you want to?

How severe is your husband's dementia now? What are his major impairments? You've pretty much decided to send him to assisted living. You are the person who understands the situation and his needs best. If you feel that is what he needs, and you can afford that for him and the upkeep on the house for you, go for it! Are you talking about a memory care section of assisted living, by any chance?

This is not an easy decision!

linda09 Jun 2012
thats the pblm , we say 50 dollars and he says no its 275 dollars and what do we say ? always agree with what dementia or alz says cuz theyre always right and we re wrong ! standing there and aruge what cost or who came by is pointless . always say yes ure right oh didnt know that , saves alot of arugements and heart aches and embarrisments ,
my dad had dementia and the dr says he needs to be in nh , i went over a thousand miles away to get my dad out of that place and let me tell you we got along good ! cuz he is always right , he still has his mind , when he says i saw my brother ( which has been dead for many years ) , i act like i was sad to missed his brother , or his mom that passed since 1963 . he would say did u see my mom , oh dang it pa no i didnt see her ! shoo i missed her !
you have to play along and it saves alot of heart aches , my pa did not belong in no nursing home , he belong here with me cuz i sure play along whatever he says and he is happy , i see what he sees and no arugements there .
he pased away march 2nd 2012 , i took care of him for 4 yrs , good and bad , i see what is in his eyes and i know what he s thinking and we get along just fine , as for poopin pissin etc , whatever pa thats ok i ll get ya cleaned up in no time and we re happy , he wasnta llowed to drive , i ll drive forya pa , and it was ok too , of course i had to throw a pissy fit and told him he takes a hand full of pills everyday im afraid ur ll wreck ur car or whatever . makes em think , ill drive pa ....
i miss my pa and i would do it again if he came back alive again ,
remmy```` do not aruge with the dementia or alz , remmy theyre older than you are and they have lived alot longer than u .. my pa s always right ... :-)

Tincankitty Jun 2012
My situation is somewhat similar- my husband has vascular dementia and has had a stoke resulting in ephasia (not sure if I spelled that correctly) we live on a farm so keeping him home was not practical- too many things to get hurt on and I know that he would not listen to me if I said no- you can't drive your tractor. Some days he seems sharp as a tack and other days he isn't good at all- the stress of all this just wears you out- God bless you and good luck.

3pinkroses Jun 2012
Think you have to take it day by day. It usually is a slow progression and as his symptoms escalate, you can plan accordingly. Also, I think it depends on the personality of the person as to how dementia will effect them and those around them. Once he goes to assisted living; there will be a big transition for both of you. Go with your gut instincts. Take care.

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