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a kennedy

(32,330 posts)
Tue Feb 20, 2024, 09:05 PM Feb 2024

How do you know when it's time for your spouse who has dementia, to be

placed in a nursing home for people with dementia?? My husband is in a memory care facility for 20 days at which time it’ll be decided if he should stay or come home. I just don’t know how to feel……..he doesn’t know his phone number, who’s president, or what day it is. He’s got trouble with his bowel, he’s incontinent and he uses a walker. He’s been home all this time, and I guess I didn’t realize how hard I worked to have him at home. I just don’t know if he should come back home………I am leaning toward full time placement at a nursing home for him. Hope we make it financially……lotsa barriers if we make to much money……I just don’t know what to do. I miss him so much at home, but I really don’t know if I can handle all the work keeping him here again.

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How do you know when it's time for your spouse who has dementia, to be (Original Post) a kennedy Feb 2024 OP
I'm so sorry you're going through this. I'm sure spooky3 Feb 2024 #1
Thank you....... a kennedy Feb 2024 #2
You have to make the best decision for him...and you. brush Feb 2024 #4
He has been on some medication for early onset......but his Dr has taken him off of it. a kennedy Feb 2024 #6
Sorry. A home might be the best place. No need for both of you to suffer. brush Feb 2024 #8
the medicine has marginal benefit, and only very early on NoRethugFriends Feb 2024 #32
My friend's husband had dementia and got MOMFUDSKI Feb 2024 #3
Yes, it'll only get worse and I know that.......i'm just sick. All I do is cry. a kennedy Feb 2024 #5
Please take care of yourself... deRien Feb 2024 #10
Sending you a promised prayer and my heartfelt love for you both. sprinkleeninow Feb 2024 #21
I understand, to some degree, what you are going through. MLAA Feb 2024 #7
Thank you, he isn't the man he was......and I know he'll change, he is pretty a kennedy Feb 2024 #11
DM me anytime you just want to share your thoughts or need a shoulder. MLAA Feb 2024 #18
I think you already know what the correct decision is. Working yourself niyad Feb 2024 #9
♥️ ♥️ ♥️ a kennedy Feb 2024 #12
I'm so sorry you and your husband are going through this woodsprite Feb 2024 #13
Thank you. a kennedy Feb 2024 #15
I am sorry you have to go through this. Gore1FL Feb 2024 #14
It's already been a huge undertaking......I hope I can handle it. I just cry to much. a kennedy Feb 2024 #16
We are all here if you want to talk. Nt spooky3 Feb 2024 #40
That's a tough decision drmeow Feb 2024 #17
I have FTD Omaha Steve Feb 2024 #19
I'm in the same situation HighFired49 Feb 2024 #20
Holding you in my heart. What would he have wanted for you? n/t TygrBright Feb 2024 #22
Bring him home. Laura PourMeADrink Feb 2024 #23
it's her decision, why would you give her an order? NoRethugFriends Feb 2024 #34
Order? Wow thats quite a stretch. My mom and sister Laura PourMeADrink Feb 2024 #39
Respectfully... AmBlue Feb 2024 #42
Of course. Not sure what i said to imply no support. Yikes Laura PourMeADrink Feb 2024 #43
Sometimes the Caregiver is the one who needs care the most. Don't forget about you. Deuxcents Feb 2024 #24
Oh Dear, I really understand. I work full time as well as being the full time caregiver for my Ziggysmom Feb 2024 #25
Is there an option of having in home help? oldmanlynn Feb 2024 #26
I'm sorry you are going through this. cate94 Feb 2024 #27
If you or your husband are combat veterans, Korea, V.N. or wherever, 3Hotdogs Feb 2024 #28
I faced this with my parents tosh Feb 2024 #29
We kept our parents in their apartment with around the clock care applegrove Feb 2024 #30
My sister's partner came to the same crossroad peggysue2 Feb 2024 #31
Family strengthened with support Dear_Prudence Feb 2024 #33
You did the right thing. When loved ones get to his stage, it is dangerous to be home alone with them. SunSeeker Feb 2024 #35
I'm so sorry AmBlue Feb 2024 #36
Bless you. My wife died three years from Alzheimer's. I know what you're going through. demosincebirth Feb 2024 #37
It depends whether they can live at home without harm to themselves or others. no_hypocrisy Feb 2024 #38
Whatever you choose, Elessar Zappa Feb 2024 #41

spooky3

(36,432 posts)
1. I'm so sorry you're going through this. I'm sure
Tue Feb 20, 2024, 09:09 PM
Feb 2024

You will make the best decision and I hope the money works out. From what you say, he should be at least in memory care; it’s way too much work for you, and what if something were to happen to you? You couldn’t help then. Sending good vibes your way+++++++

brush

(58,059 posts)
4. You have to make the best decision for him...and you.
Tue Feb 20, 2024, 09:15 PM
Feb 2024

Look into medication that is out now for dementia. That may factor into what you decide.

a kennedy

(32,330 posts)
6. He has been on some medication for early onset......but his Dr has taken him off of it.
Tue Feb 20, 2024, 09:17 PM
Feb 2024
 

MOMFUDSKI

(7,080 posts)
3. My friend's husband had dementia and got
Tue Feb 20, 2024, 09:13 PM
Feb 2024

worse and worse. Finally the family doc told her she would die before he would if she didn’t put him into memory care. She was worn out and couldn’t keep up with him. She listened to the doctor and it was a good decision for both. Wishing you well in your endeavors. Have a restful evening.

deRien

(223 posts)
10. Please take care of yourself...
Tue Feb 20, 2024, 09:32 PM
Feb 2024

My husband had a lot of health issues from Multiple Sclerosis that required me to take care of. He was beginning to show signs of diminished reasoning before his sudden death which made taking care of him even harder. I was really worried that the stress of taking care of him might cause my own premature death. It is a hard decision when to let go of taking care of a loved one but keep in mind that your physical, mental and emotional health are important too. I wish only the best for you and your husband.

sprinkleeninow

(20,594 posts)
21. Sending you a promised prayer and my heartfelt love for you both.
Tue Feb 20, 2024, 11:05 PM
Feb 2024
May you be guided from above and that the resolution brings you the peace that passes understanding.🫶

MLAA

(18,678 posts)
7. I understand, to some degree, what you are going through.
Tue Feb 20, 2024, 09:18 PM
Feb 2024

My husband’s short term memory is shot. He is sometimes wobbly when he walks. I need to prepare and give him his meds and enablers, make sure he eats and remind him to shower. Yet, he continues to be cheerful and hasn’t lost a sense of humor, doesn’t have incontinence issues and he still knows me. While I sometimes get a little tired and sad , I’m not yet overwhelmed but I’m also 20+ years younger.

It’s so tough I imagine to know when it is time to seek help. It sounds like you have a trial period. I would see how he adjusts to the care center and how you feel living without him. I would think at some point it won’t be physically safe for him to be at home and at some point it will be overwhelming for you to care for him at home. I guess if it were me, if he settles in okay at the center it might be a sign it’s time. Sending you hugs this is so, so hard. I do sometimes miss having a partner to share decision making with.

a kennedy

(32,330 posts)
11. Thank you, he isn't the man he was......and I know he'll change, he is pretty
Tue Feb 20, 2024, 09:38 PM
Feb 2024

happy for the most part, does get agitated at times, but for the most part he is pretty happy, just doesn’t remember anything.

niyad

(120,744 posts)
9. I think you already know what the correct decision is. Working yourself
Tue Feb 20, 2024, 09:21 PM
Feb 2024

to death will not help either of you, will not be fair to either of you. For both your sakes I hope the money situation works out.

If you do decide to place him in full-time care, do NOT let ANYONE try to make you feel guilty, or inadequate or anything else negative. You have every right to protect your well-being, as you do his.

Whatever you decide, know that your whole DU family is here for you. Lean as hard as you need.

woodsprite

(12,247 posts)
13. I'm so sorry you and your husband are going through this
Tue Feb 20, 2024, 09:44 PM
Feb 2024


My MIL kept my FIL at home with his Alzheimers until he passed. Even with my SIL living there and my aunt (who’s a retired nurse) staying with them the last 6 months, they needed more and more assistance as he slept little, lost mobility, bowel/urine function/diaper changes, and communication ability.

Yet there were times he was lucid and knew who everyone was and could discuss things that had happened in his past, discuss his school planning, answer questions, and sing songs. He would have crying bouts over everyone lost in the wars. His wartime memories weighed heaviest on him. He had been a military photographer.

Music seemed to immediately break through to him. Changing him and the bed when there was an accident was probably the most difficult task which needed to be done several times a day. Bathing was another difficult task that hospice or home health nurse came in to help with 2-3x /wk. He wasn’t heavy, it was just him not being able to cooperate or fighting when they were trying to move him.

It’s so hard deciding what to do, and the caregiver deserves care as well. I think it would not have taken such a toll on my MILs health (she was 83 at the time) if they had moved him to assisted living or took advantage of respite stays, but she flat-out refused. When Dad was still mobile, she insisted on keeping up their traveling since they both enjoyed it, but there were times he wandered off, once in the Atlanta airport. She got him an engraved bracelet with her contact info. She kept him moving and on outings until he became bedridden.

On the other hand, if he had been in assisted living full-time, she and my SIL may have missed out on some of his lucid moments - the last one which lasted several hours - was about 2-3 days before he passed.

You may want to check into the respite care possibility or home health help if you do decide that home is the best place for him.

Sending love and prayers your way.

a kennedy

(32,330 posts)
15. Thank you.
Tue Feb 20, 2024, 09:55 PM
Feb 2024

He does have some pretty good times…..just so few and far between. I know I could do it for a while……..just not sure how long.

Gore1FL

(22,000 posts)
14. I am sorry you have to go through this.
Tue Feb 20, 2024, 09:44 PM
Feb 2024

It's hard to undergo changes such as this. It's hard to let go of what you are used to. It's scary to reach for what comes next.

I am sure he wouldn't want to run you ragged. I don't know what nursing home rules might entail, but I would suspect you could have him home under your care for whatever occassion you wanted.

You'll find your way.

a kennedy

(32,330 posts)
16. It's already been a huge undertaking......I hope I can handle it. I just cry to much.
Tue Feb 20, 2024, 09:58 PM
Feb 2024

I hope I can just get through it all. It’s killing me. Thank you.

drmeow

(5,334 posts)
17. That's a tough decision
Tue Feb 20, 2024, 10:15 PM
Feb 2024

I'm not looking forward to having to make it about my husband, who has a history of alzheimers in his family.

There may be a agency on aging in your area where you can find counselors who can support and advise you: https://www.hhs.gov/aging/state-resources/index.html

HighFired49

(391 posts)
20. I'm in the same situation
Tue Feb 20, 2024, 11:04 PM
Feb 2024

but my spouse is at home. If you don't mind my asking, how did your husband get to be in the care facility? I'm trying to figure out how to get my spouse into a care facility without her cooperation. She will not go willingly. I just can't take care of her 24 hrs. a day, cook, clean, do laundry, take care of the dogs, and keep up the yard at 74 yrs. old. My spouse has no memory, either short or long term, and can't help around the house. She gets very agitated when someone, other than the two of us, is in the house. My doctor has suggested, at minimum, getting her into a day care facility a couple of days a week, which would leave me free to do things I want/need to during the day, or just rest. She wouldn't have to go every day, but at this point she refuses to go even for a day. At this point, it just may have to be a 24hr. care facility.

One of the most concerning things that my doctor brought up is my inability to lift her when she falls, or get her in and out of the car, etc. (I have severe arthritis.) I've already had to call an ambulance twice in the last two months to get her up and take her to the hospital because of minor injuries from falling. Doc says that her falls will become more frequent, and she sometimes becomes combative when I try to pick her up, dress her, or help her move from one place to another. I suppose that you have to make your decision based on how exhausting it is to take care of your spouse. I know it's exhausting, especially when it's an all day every day situation. If you do bring him home, you might try in-home care help. But, if you place him in a facility nearby, you can go see him as often as you like. The care facility basically just takes on all of the exhausting work. Keep in mind that what ever happens, you have to take care of yourself. Try talking to your doctor about your situation, and tell him/her everything about your physical abilities, mental state, and monetary and family situation. i hope everything goes a well as it can for you. I know that it's a very difficult situation. Good luck.

 

Laura PourMeADrink

(42,770 posts)
39. Order? Wow thats quite a stretch. My mom and sister
Wed Feb 21, 2024, 08:58 AM
Feb 2024

took care of my dad at home for 30 years of slow, progressive dementia. Saw first hand.

Of course it's her decision. OP, please PM me if you want to talk privately.

❤️

AmBlue

(3,444 posts)
42. Respectfully...
Wed Feb 21, 2024, 02:05 PM
Feb 2024

It is VERY different when there are two family members caring for a loved one stricken with dementia. You can tag-team and give each other time off, and time for self-care.

Every situation is different. It sounds like the OP is doing this solo, as I did with my mother. Being a lone caregiver is devastating emotionally and physically and can kill you, literally. She needs support, whatever her decision is.

 

Laura PourMeADrink

(42,770 posts)
43. Of course. Not sure what i said to imply no support. Yikes
Wed Feb 21, 2024, 04:55 PM
Feb 2024

People seem so poised to jump. Yikes.

All good. All her descision. Ya, my mom's 98 and never drove. Weird huh.

Horrible, horrible disease. And unbelievably difficult for care givers.


Deuxcents

(20,166 posts)
24. Sometimes the Caregiver is the one who needs care the most. Don't forget about you.
Tue Feb 20, 2024, 11:20 PM
Feb 2024

It’s not selfish, it’s just a fact. My very sincere wishes for peace of mind while you’re making decisions for you and your loved ones. 🫶

Ziggysmom

(3,651 posts)
25. Oh Dear, I really understand. I work full time as well as being the full time caregiver for my
Tue Feb 20, 2024, 11:21 PM
Feb 2024

disabled husband. I'm fortunate to be a computer analyst who can work from home. My husband has severe COPD on oxygen 24/7, seizures, loss of mobility from a broken hip in 2023, and episodes of dementia that happen sporadically. I worry the dementia will become more frequent and I won't be able to manage. His neurologist claims the seizures have caused brain damage that is responsible for dementia and memory loss. After he broke his hip last year he went to a rehab facility within a nursing home. He absolutely hated it and was actually abusive to the staff. I was shocked. He was never like that at home. They tried their best, but he would not cooperate. When I brought him home he was his usual, kind self.

I'm relieved to hear your husband sounds like a happier patient. Do what keeps both of you safe. People with dementia can accidentally injure themselves and their caregivers. Praying for both of you. I know how hard it is to be separated from your partner. Take care, sending you hugs


oldmanlynn

(515 posts)
26. Is there an option of having in home help?
Tue Feb 20, 2024, 11:27 PM
Feb 2024

Not sure if its even doable. I have my 83 year old father at my house and one day see me also needing to understand more. Best wishes. Im sure you will make a good decision

cate94

(2,900 posts)
27. I'm sorry you are going through this.
Tue Feb 20, 2024, 11:29 PM
Feb 2024

It’s difficult but you know what must be done. You can visit as much as you want and they will be able to take of him in ways that are becoming too difficult for you. Sending prayers for both of you.

3Hotdogs

(13,579 posts)
28. If you or your husband are combat veterans, Korea, V.N. or wherever,
Tue Feb 20, 2024, 11:44 PM
Feb 2024

go to your local V.A. office and apply for benefits.

tosh

(4,452 posts)
29. I faced this with my parents
Tue Feb 20, 2024, 11:49 PM
Feb 2024

starting in 2000, 2001. I told them that I would help them to remain at home as long as it seemed that they were SAFE there. My mom had been diagnosed with dementia and my dad’s health was otherwise declining. ( I lived a city block away and had some freedom with my work.)

It was 2 years max before it had to end. I helped them move to a good assisted living facility a mere 6 mouths before my dad would pass away. It was best for my mom, though. She eventually was able to move into an excellent memory care facility in the same complex where she did well for seven years.

It wasn’t easy, but it was best. 😢

applegrove

(123,625 posts)
30. We kept our parents in their apartment with around the clock care
Wed Feb 21, 2024, 12:00 AM
Feb 2024

Last edited Wed Feb 21, 2024, 12:48 AM - Edit history (1)

so they could stay together. Even with all that help we were forever fixing one issue after another (widening doors for a wheelchair, putting up a poll by the bed so they had something to grab onto, nursing care that came with the building, etc... ). My sister did most of the problem solving. When my mom died my dad's name came up in a local nursing home vacancy and since he was such a big guy and when he would fall we had to get firemen or ambulance people to lift him back up (he never broke a bone as he had really strong bones) I think the city wanted him in a nursing home so he didn't use up city resources. So we moved him. He had fun from the get go and started speaking French to the staff (we never knew he could speak French but he had a summer job in the wilds of Quebec with a lumber survey crew when he was 17 or so). All of the problems were solved from the moment he moved in. Everything was onsite. The stress level went down for all of us. He was fine with the move and had a really nice view of the city and hills in the distance. The food was simple but good. It was a great experience (except for lockdown during covid). He lived there for 7 years till he passed. He had a feisty health care aide or two. They kept him laughing. We brought in home cooked dinner on Sunday nights. He had a single room. It was the best decision for everyone. He didn't have much dementia so he was different than your husband. We had picnics outside with lobster sandwiches, vichyssoise and strawberries and cream. There was a dock by the water where you could feet the ducks and geese. He had a prescription for one alcoholic beverage a day and hardly used it. As he aged he was on mushy food and seemed sad. My brother died. They gave him meds for depression. It is what you make of it and depends on what your resources are and if you have the time. Lots of people visited their loved one once a day. Some people rarely had guests.

My grandfather had altzheimers and was put in a nursing home 35 years earlier. He was so upset to be away from granny he lashed out. Then he was committed to an asylum in a small town 1.5 hours away where he got the best geriatric treatment. Coincidently it was located on the same street as where he grew up. I think they can better handle bad behavior with meds these days.

Hope you get lots of takes and ideas of what to do.

peggysue2

(11,520 posts)
31. My sister's partner came to the same crossroad
Wed Feb 21, 2024, 12:01 AM
Feb 2024

He called me and asked for advice, guidance. It was a painful conversation but he had done everything for my sister, was the best partner she could have ever had--loving, kind and extraordinarily gentle. Still, he was at the end of his rope. The moment came when the disease was simply overwhelming. He had help but any help is temporary in nature and my sister had become violent and really a 24/7 project. There was little sleep, constant threats and just endless chaos.

I told him that he would do my sister no favors if he fell apart physically or emotionally. She was definitely at the stage where a facility geared toward late-stage Alzheimer's was appropriate, necessary for her well-being and his.

He found a facility about 30 minutes from their home which meant he could visit everyday, nearly 'round the clock. She was well taken care. She died 10 days later.

I've been a caretaker. I know how unbelievably difficult it is, how utterly exhausting. I think for all of us in similar situations, we end up making a personal decision about the care we can give, maintain and continue which truly benefits the patient in our care and our own endurance.

It's really hard. I'm so sorry you're going through this. Just know that whatever decision you ultimately make, there are no judgments at the end. It's a matter of what's best for your husband as well as yourself.

Sending blessings in your direction.

Dear_Prudence

(838 posts)
33. Family strengthened with support
Wed Feb 21, 2024, 12:17 AM
Feb 2024

My heart goes out to you. My experience is that it is impossible to be a full-time round-the-clock caretaker and also a responsive family member for someone. At a care facility, others will be caretakers aound the clock. You will be free to be his family once again. You will have the time and energy to visit on a regular basis, to listen to his favorite music with him, to hold his hand, to share the comforting sound of your voice by talking or reading or singing. You will need to reconnect with your friends or with activities that refresh and recharge you, his family. I wish you and your husband all the best.

SunSeeker

(54,072 posts)
35. You did the right thing. When loved ones get to his stage, it is dangerous to be home alone with them.
Wed Feb 21, 2024, 12:20 AM
Feb 2024

My good friend kept her husband home because she thought it would be kinder to him that putting him in a nursing home, even as he became very weak and wobbly. She was much smaller than him and was unable to lift him. One day he fell awkwardly in the hallway and couldn't breathe, but she couldn't even flip him over, let alone lift him up. She immediately called 911 and went running to her neighbors for help, but nobody was home. By the time paramedics arrived 7 minutes after she called, he had already suffocated. She was devastated and 2 years later she is still a wreck because she blames herself for his death. If you can afford it, put him where he will get the 24/7 care he needs. It is the best thing for both of you.

AmBlue

(3,444 posts)
36. I'm so sorry
Wed Feb 21, 2024, 12:38 AM
Feb 2024

..you're going through this. I kept my.mother for nearly 5 years as her dementia worsened. I finally went the memory care route when her incontinence and paranoid sundowning episodes made it unsafe for her to be at my home. I was utterly exhausted, guilt-ridden, and broken. In retrospect, I honestly wish I had done it sooner because I finally got to be her daughter again, instead of her 24/7 worn-out caregiver.

If your husband is receiving good care and settling in at the memory care, that is a gift. It can never be as good as you, but it can still be the best possible for now.

The one thing about dementia I had to come to terms with is that no matter how well I cared for Mom, I could not turn back time and put her pieces back together. There were simply too many missing. There comes a time that, as a caregiver, you must care for yourself as well, and let others help you.

I am sure your husband would want that for you. My sincere and heartfelt sympathy to you for all you are going through.

demosincebirth

(12,740 posts)
37. Bless you. My wife died three years from Alzheimer's. I know what you're going through.
Wed Feb 21, 2024, 02:54 AM
Feb 2024

It’s a dreadful Disease

no_hypocrisy

(49,233 posts)
38. It depends whether they can live at home without harm to themselves or others.
Wed Feb 21, 2024, 06:25 AM
Feb 2024

My college friend is going through early dementia in her mid-sixties. Combination of hereditary Alzheimer's and three separate treatments of chemo (giving her chemo brain). She can still remember certain people and events in her life, but gets frustrated when she can't.

Her sisters have removed her from her home and she is now living with an aide in a "pool house" that's on the property of one of the sisters. The building has heat, A/C, a sauna, a kitchen, cable TV, a bathroom, a bedroom. She hasn't tried to leave (yet).

Her sisters take her to doctors' appointments and for chemo. They have altered their lives for her without complaint.

It's hoped that they can keep her at home for a few more years.

I'm sorry you're going through this. It takes more than love. It requires devotion to do the right thing at the right time. And even then, you're not certain it was the right choice.

Blessings to you and your husband.

Elessar Zappa

(16,102 posts)
41. Whatever you choose,
Wed Feb 21, 2024, 10:23 AM
Feb 2024

don’t feel guilty about it in any way or let anyone else guilt you out. There’s no shame in acknowledging when one needs help. Hope everything works out for you.

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