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He had a stroke and has vascular dementia- long term memory excellent, but deals with the short term problems of doesn’t remember if he took meds, hygiene, etc- so I had to put him into a nursing facility 2 years ago- he is getting more and more depressed and withdrawn and I feel like the nursing facility just keeps adding more and more medications as their solution- I’m trying to determine if he would be better living with us and me trying to get care assistance- or if I just need to accept this is the reality- it’s just hard because he is so young , (54), so I’m looking for advice from anyone who has similar situations, and/or what had worked best for you

Is this your husband? If so, bring him home and get help thru in home care.
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Reply to cinna60
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Please don't bring him home with you. There's the potential for too many years going forward, and you would be required to give up virtually everything you've ever thought your life would be about, and dedicate yourself to 36 hours a day of caretaking.

You don't say if you and your brother are near one another. If not, I would suggest finding a suitable place close to where you are and moving him now. Moving later only gets more and more difficult.
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Reply to CarolLynn
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Imho, there was a reason that you placed him in the nursing home two years ago and to suggest that you could now provide 24/7 medical care for him living with you would no doubt be a poor decision. I do not advocate it.
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Reply to Llamalover47
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It is incredibly sad and depressing to see a younger person with dementia. So much grief! What I thought was early onset dementia with my brother turned out to be a massive tumor on the part of the brain that controls personality, memory, impulsiveness, reasoning and problem solution. Do not take him into your home!! Just about everyone on this forums who has taken in a relative has regretted it. Given your brother’s age he could live in this condition for years.

Become very proactive in his care. Do you have power of attorney which would make it easier for you to step in? What are they adding medications for? Does he have a neurologist who does the prescribing or a doctor who serves the nursing home. We had a family member who experienced a nursing home doctor who wouldn’t follow her primary care doctor’s prescriptions. It made her a lot worse. The only recourse was to move her to another facility that followed the PCP’s orders.

Memory care might be a good option since the staff knows how to work with folks like him, and don’t let them hunker down in their room all day. Just being in the hospital around other people brightened up my brother. An assessment with a gerontological doctor and/or social worker may give you a new picture. A new facility could help. Good luck!
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Reply to katepaints
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If there is money that pays for his facility care, then it could be used to manage his care at home. His finances will determine what can be paid for per month so that you have assistance.

If his care is paid for by Medicaid, he will get limited assistance in your home (so many hrs per week). Programs that assist people in the home are usually limited to so many people a year, so you would need to check with your own state agencies to find out what he would be eligible for if moved out of current facility. Social worker at the facility may be able to help you as well.

Ideally, he would probably do better in your home. He is very young to be surrounded with majority of elderly people all day long. It would depress anyone that age. For most people in the NH environment, it is their last stop before leaving this earth. Not an ideal situation to promote healthy thoughts. For me, personally, I would bring my brother home. Same reason I provide 24/7 care for elderly parent - I just can't bring myself to put her in facility care. Was it the absolute best decision for my own life? Probably not, However, I always say we have to make decisions like this based on 'what we can live with'.

Evaluate carefully the care your brother needs. If you had absolutely no help at all, could you do this? If you wanted to go somewhere, could you go? Would you have anyone to back you up in an emergency? Then decide.
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Reply to my2cents
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I am so sorry you and your brother are going through this. He is very lucky to have you as his friend and advocate. He is also very young to be in the environment of the average SNF; most of their long term residents average age in about 82. Totally different interests and activity level. I remember having to refused admission to two residents to the facility I work at because we could "not meet their needs" in terms of appropriate activities and socialization; they were 17 and 25 respectively and our average occupant age was 80 and our activities were geared to that age group. We were the closest facility to the families involved and had a ton of staff but I knew these two young men would become withdrawn and depressed if we had admitted them.

I don't think the nursing facility he is in is willy-nilly putting him on drugs (only the facility doctors can add meds) but those doctors may be used to treating older people. He may need a new work up by outside doctors including those specializing in neurological issues in the young and in stroke victims. Can you possibly request this long distance? I know your brother is not a senior yet but possibly a call to his states dept. of health or Office on Aging could give you some helpful resources to investigate.

I personally would counsel you not to bring him to your home at this time unless you can find no other solution after some research. Unless medicine comes up with a new treatment soon, his dementia will probably get worse and it will cause a major impact in your life as well as that of your family (can they all deal with it?) even if you can get some outside assistance. Is it possible to find a facility (anywhere at this point but start closer to your home just to make it easier) that deals with a younger clientele? I would concentrate on facilities that deal with persons who have had sports injuries (yes, I'm thinking of Christopher Reeves) and/or resulting dementia diagnoses. You might want to add teaching hospitals and universities to your list of places to search - check out the big schools/hospitals who always seem to be into something Sandford, Harvard, New York Hospital, Columbia Presbyterian, Penn Medicine, Mayo Clinic, etc . I know there is a young person stoke program at Stanford (https://stanfordhealthcare.org/medical-clinics/stroke-center/programs-services/young-stroke-program.html). This type of group may be able to recommend someone that has dealt with stroke and resulting dementia dx in the young. Even if they say they can't help you always ask if you can leave your name and phone number. That's how I was able to find a good situation for one of the patients I mentioned in the first paragraph of my answer; got a call from a stranger 5 weeks after I'd told them the situation and left my name! A new program with new (if needed) meds and a living situation with a slightly younger population might see a bit of a rebound for both of you.

I wish you luck and grace (and a large cup of coffee because you could be on the phone and the computer a lot) on this journey. You are doing all that can be humanely done so be proud of yourself.
Peace.
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Reply to geddyupgo
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I've had experience with someone with vascular dementia. It's very difficult if you were to take him (no matter what age the person is) in your home. It's a 25+ hour job, even if you have aides. May I suggest you try an AL with an aide that can come by at least 3 - 4 times a week and walk with him and participate in activities with him. Most AL are starting to open up and allow the residence to have outside aides and visitation. I don't see any reason for him to be in a "nursing home" environment unless he needs specialized care. In an AL - he can get med assistance and bathing reminders (or assistance). All the best.
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Reply to HelpingPrents
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If you placed him in a facility, you realized that you can not care for him at home. The dementia will not get better and probably not any physical issues related to the stroke. Please keep conversations going with staff, his primary care doctor, and his neurologist. He will do best with a consistent routine, more interaction with others (very hard to do with COVID pandemic), frequent visits (phone calls, video phone calls, and in person visits) from family and friends. AND psychoactive medications that are either under control of his neurologist or a geriatric psychiatrist. It does take awhile for psych medications to become effective and each person will need adjusted doses and medications to find just the regimen that works.

Your job is tough - be his advocate and be his encourager.
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Reply to Taarna
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The man's needs are more than can be provided in HIS own home (unless a team of 24 hr carers are provided & being managed adequately).

Any suggestion that a relative takes on the care of a person with needs this high into their OWN home (without such a team of 24 hour carers) is just la-la-fantasy fluff. It is a sugar coated ball of cotton-candy that 'home' is better for everyone without any basis in real world common sense or logistics.

Not every nursing home is dire.

Not every home environment is safe. Or meets the care needs.

This one song is getting very old indeed. There are so many songs in many styles & cultures.
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Reply to Beatty
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Home Is Always Best if it's an Option.

Nursing Homes are depressing, understaffed and not a loving environment.
They Over Medicate!!!! Do whatever makes it easier on them.

He will definitely improve, be happy and feel loved and safe once he's back home.
Don't wait another minute, start the paperwork now!
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Reply to bevthegreat
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Daughterof1930 Apr 12, 2021
Will he “definitely improve, be happy, and feel loved and safe” if a home environment cannot meet his long list of needs and he’s faced with a caregiver who becomes exhausted, stressed out, and possibly resentful of their own life being consumed? This is dangerous advice in a situation we’re only seeing a snippet about. As for the same old drivel about nursing homes, depressing, not loving, overmedicating, how can we possibly know what’s happening in each and every nursing home. Of course there are bad ones, just as there are bad home environments where no one we care about should be. Likewise there are caring, professional places for families facing unbearable issues. Can we please stop piling on the inaccuracy and guilt?
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cwillie took the words right from my fingertips.
A Group home or even Assisted Living where the residents are more active might be a better option than a Skilled Nursing Facility.
The one thing I would make sure of is that in an Assisted Living he would not be able to leave by himself.
Living with you is a great option IF you can handle it. Can you do it yourself or will you have to have caregivers that help you. (I can say right now you can not care for someone 24/7/365 without help. ) And he will continue to decline. He will need more and more help not less. He will need more and more supervision.
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Reply to Grandma1954
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I’m very sorry, My husband got vascular dementia when he was 50. He stayed at home with us. He was lucky in that he had three friends that didn’t abandon him. One took him for a few hours weekly, the other two would drop by occasionally.
He would not take baths, nor listen to me either.
It would have been best to have aides come in. He took his meds, but he’d been on them since 4 yrs old so that was not something he needed to remember. He was a people person and his life improved (ironically) when he started to go for dialysis his last year of life because he could interact with people.
My mother is in a senior home now with AZ the difference is immense and your brother knows it too.
Since he doesn’t listen to you either, Does he have any other friends/family that will take him out weekly (make a schedule so he gets taken out three times a week?) or is it possible to take him to an adult daycare if the facility he is in does not have activities.
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Reply to Karen51
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I would explore the possibility of some type of group home. Nursing homes are primarily dealing with older people in the last years of life and/or with high physical needs whereas there are many kinds of group homes that help those with cognitive deficits, hopefully you can find something that gives him the possibility of companionship and perhaps even a meaningful occupation.
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Reply to cwillie
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My wife is 61YO. She is bedbound or in a wheelchair. She is Bipolar and has multiple other morbidities.ie CHF, COPD, Kidney disease, mechanical aortic and mitral valves (since 19800 Type 2 diabetes and others,
She was in NHs most of the time from 11/2017- 08/2019, then back and fourth from home to hospital to SNF for rehab, back home and back to SNF.

She does NOT have use of her right limbs due to stroke in 2017. Back surgery which resulted with a blood clot in June of 2020 took her right leg and left her incontinent x's 2. She is on 25 + Rx meds and about 5 OTC . When she came home in August she had a stage 2 bed sore which she had never had before. In Oct 2020 she was diagnosed with Advanced Vascular Dementia.

To start with, I had help 3 hours Xs 3 days and now it is up to 10 hours Xs 7 days although most days it is hard to get more than 8 hours .

Although she has some depression daily, she is still better off at home. I do much all of her care when there is not an aide present and I help some of the aides with her care. (She's about 160 lbs and cannot help much with her on turning. All transfers are with a Hoyer lift.

It is hard work especially since I am 66 YO with chronic back pain from and injury in 1996 and 2 failed back surgeries.

Since she is not mobile, I do not have to worry about her leaving the house. I have been able to get her meds adjusted so that she sleeps through most nights, so I am able to sleep. Most days she know who I am to her but not always my name. I now answer to Mommy, Mom, Daddy, Dad, honey and sometimes "Hea man".

We adopted our grandson about 2007. He has been with us since 2005. He is 18 now and has some special needs himself, but is very helpful and always polite and obedient. She rarely remembers his name but often calls him her deceased son's name, his birth fathers name, and her brother's name. He always corrects her as all he came to us with as a 3 year old was his name!

If I had left her in a SNF in August, I do not believe she would still be alive as she has had 4 UTI's that were EBSI's (Extended Spectrum Bacterial Infection) that if not treated properly or soon enough could have easily caused her death.

Had I known that her insurance (provided by Florida Medicaid ) would afford as much care as they have allowed at home so far, I probably would not have had her stay in any SNF after the period of rehab.

Yes, it is very hard work, stressful work, tiring work, but the alternatives are unacceptable. If and when she becomes combative or completely incoherent to her surroundings, I will reconsider my position.

This is a personal decision that only you can make. No one else can tell you what you must do. Only you know how much you can take and where your cutoff point might be.
Note: In terms of Medicaid, she is still considered a LTC patient but with home care.



Each stay in NH/SNF caused her deeper depression.
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Reply to garylee
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His situation might be similar to someone with early onset Alzheimers. There's no easy answer. Some facilities allow private aides to provide more personal care, if this fits in with your finances. An aide going in for a few hours a few times a week could take him out for a walk or to somewhere he likes to go. Everything is more difficult during the pandemic, including having extra aides going into senior facilities.
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Reply to NancyIS
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Nursing homes, esp for someone younger, could be a very depressing place to be. Unless he truly needs specialized nursing care, I would recommend, as others have, searching for a good MC facility near to where you live. However, being so young, perhaps he is on Medicaid? If so, that could limit his options, as in most states AL and MC are not covered. If this is the case, perhaps you could talk with someone in the Medicaid office to see if there are any options (some NHs do have MC wings, but I would think the residents might also have other issues which require NH care.

Be wary of taking him home with you. You placed him once, likely because he was difficult to help. He won't improve - in fact moves can lead to some further regression, even to a good MC unit - it will take time.

But, a move, if it's possible, to another place that might be more willing to work with him and get him "active" in the community, thereby reducing the need for medications would be best for him. It may take time for him to adjust, but he probably needs a better environment than a NH. Too often NHs are understaffed and underpaid, so it's easier to fall back to medicating residents than addressing the underlying concerns/issues.

If you can find one closer to where you live, you can visit with him, check on him and watch over his care. You might be able to take him out for short outings, even if it's just for a walk. You can bring little gifts to him, to brighten his day.

As others noted, it might be a good idea to have him checked outside the NH. Perhaps the docs you take him to can suggest reducing or eliminating some of the medications.

While a more urban area may have more specialty places to choose from, you may not have that many choices. My mother's MC facility (private pay, non-profit) had mostly older people, but there were at least 2 who were younger than me while she was there! Such a sad thing to see - at least my mother got a good 90 years before dementia. It's like losing 20-30 years of your life.

Anyway, despite many being older (the residents also all ranged from totally mobile to walkers to being in wheelchairs), many are still active and he might do better among more active people. They have activities to try to keep people active and socialized. They get to choose between several options for meals. Often staff will recognize someone's abilities and needs and will help more often to keep them occupied.

Given many facilities are now vaccinated, you should be able to arrange to see them. They are not all created equal, so be willing to check, recheck, go at different times of the day, etc to see for yourself.
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Reply to disgustedtoo
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I am a certified nursing assistant with 22 years of experience with the bulk of it being with alzheimer's and dementia in the elderly but I have worked with a lady in her 50s with early alzheimer's who was very advanced in her symptoms. The only way to get anything done with her was to play Pat Benatar music on my cell phone which she would automatically calm down for and sing along. She couldn't speak full sentences but could sing every word of "We Belong" by her favorite artist, Pat Benatar. I was named the only CNA or staff member who could help this lady for which I was honored and I shared my tactics with the others especially when I knew I was leaving the company. She is on my mind daily and I left there 3 years ago.
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Reply to Phoenix713
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From your profile, I can't tell if you still live far away from him, or if he is in a facility closer to you.

I applaud the love you have for your brother but I strongly urge you to NOT take him into your house unless he has the monetary resources to afford in home care.
Your life will change drastically. A full night's sleep will become impossible. You won't be able to go on trips, have a social life outside your home, unless you have someone reliable THAT YOUR BROTHER ACCEPTS stay with him to keep him from wandering off, turning all the burners on the stove on, leaving the water running, using a carving knife to open a bottle of wine, or using a metal skewer to fish a piece of toast put of the toaster. All of these things happened in my house while either my sister were present. You truly cannot let him put of your sight.
A Memory Care facility close to you will be the best. You can visit with him, but go home and live your life.
Sending you a huge virtual hug.
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Reply to Maple3044
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I'd look for a different nursing home. Or better still, not a nursing home as such but a specialist memory care facility with a good track record in younger residents - possibly people with brain injury legacies, for example.

It isn't just the stroke, though, is it - that's quite a list of conditions your brother is dealing with, and he's young for all of them. Before the stroke and before you were really involved in supporting him, what was going on with his health? I'm wondering how he got to where he is now, and whether there might be any brighter prospect for him if you can only get someone to pay attention to him holistically.
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Reply to Countrymouse
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I have to say something about Medications and Nursing home doctors. They are General Practioners knowing a little about everything but are not specialists. I think I would rather my brother see a neurologist to determine what kind of Meds he would do well with. Of course he will be depressed, I think NHs depress most people. He could be over medicated too. See if you can get a list of his meds and take the list to your Pharmacist to see if there are any interactions.
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Reply to JoAnn29
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jacobsonbob Apr 12, 2021
The doctor who did most of the visiting at my mother's nursing home was a geriatric psychiatrist, but there was at least one other doctor who came periodically.
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I met a middle aged lady with mild Down Syndrome & mild memory issues starting (expected to worsen). Her room was in the Memory Care section but she attended many activities in other areas.

They had a great pastoral care approach of finding what gave each resident joy & doing what they could towards that. They had the usual church, bingo, balloon games but also groups for flower arranging, a discussion group for current affairs, choir & classical music groups. A short walks group (for the more mobile) off the property.

What does this person like to do most? Would having a personal Aide come in to facilitate that help? Having a special interest is something we all enjoy.
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Reply to Beatty
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I’m sorry about your situation. My LO had multiple strokes. She had Vascular Dementia and later thought to also have mixed with AD. She was diagnosed at age 62. She went to an AL first, but soon declined and went to Memory Care. She declined quickly and was wheelchair bound, double incontinent, and in need of assistance with all daily activities within a few months. No short term memory at all and repeated things over and over. She also worried, cried, and was very anxious. Daily meds helped her a great deal. I’d consult with his doctor and discuss the medications. Finding the right combo is vital. A geriatric psychiatrist would be ideal. Fortunately, with the right low dose meds, my LO became quite content in MC , without being drowsy.

Was there a proper assessment to determine the level of care he needs? I might start with that. Normally, nursing homes are for those who need skilled nursing care. If you are thinking of bringing him home to provide care, I’d read a lot to prepare. And if he needs skilled nursing care, they’ll likely require a plan of transition to ensure you are properly equipped in the home. I hope someone who has done that before will chime in. It’s a huge undertaking, especially if the person is heavy, resistant or agitated. I might also add that dementia often causes the person to lose their former personality. Due to the brain damage, they may seem to be depressed, withdrawn or agitated.....sometimes activities, interaction, medications, etc. help, but sometimes they don’t. It’s quite sad.
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Reply to Sunnygirl1
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Is he in a nursing home, or a memory care facility? Bg difference, because a memory care place will emphasize mental stimulation and he won't necessarily be around a bunch of old people just crumbling to pieces.

My mother's memory care has a guy in there who's only about 47 and has elementary-age kids. I'm not sure what his dementia issue is -- head injury/stroke/early onset Alzheimers -- but he seems very content there.

Be sure you have your husband placed in the right type of care facility. Maybe even a smaller board and care home would suit him better.
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Reply to MJ1929
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jacobsonbob Apr 12, 2021
"a bunch of old people just crumbling to pieces"--LOL, I understand your point, but this description would just about scare anyone from ever being willing to go into a nursing home! When my mother was in one, there were some residents who were in the 40s, 50s, etc. having medical conditions or injuries that resulted in their requiring that level of care, and some didn't have dementia. (Of course there WERE some residents who fit this description...)
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"Nursing facilities" do not hand out medications willy nilly; a doctor has to prescribe them first, and then the facility will hand them out as written. You would be much better off being an advocate for your brother in the SNF than taking him home with you, in my opinion. Dementia is a VERY difficult condition to deal with and for a family to cope with, especially since it progresses. Are you POA for your brother? If so, you can have a meeting with his doctor and discuss the medications he's taking and see what you think. If you feel that he's overmedicated, speak up! Let the doctor know you think he's becoming more depressed and withdrawn, and ask his opinion on the matter. Go from there.

Perhaps you can make arrangements to visit him frequently and bring over small gifts, magazines, treats, things like that when you go. Are you able to take him out for a car ride or out to lunch? My mother lives in a Memory Care ALF and things have opened up recently, so we're able to go visit her in person now & give her a hug. I know that many residents of long term care have had a hard time of things the past year with the virus ruining everything; it has been depressing and isolating for them.

If you have no experience caring for a person with dementia, it can be very very difficult to do so at home unless you can afford a lot of caregivers to come in and help you. You won't be able to leave him home alone, so you'd have to take that into consideration, and how that would affect your life; if you work, have children, etc. There are just a TON of things to consider before making such a decision and how it would impact you and the rest of the household. Is he incontinent? Are you willing to change adult briefs and linens on a daily basis? How about helping him shower, since you mention hygiene being an issue? As dementia progresses, they normally HATE showering and adult briefs and can become very aggressive about refusing both. He'll need 3 hot meals a day cooked, 3 healthy snacks, activities and exercise, and you'll need to make sure the chemicals are locked up and out of his reach. Locks will have to be installed high up on the outside doors to make sure he cannot get outside at night while everyone is sleeping and wander away, as often happens with dementia as it progresses. Safety in the home is of utmost importance and has to be considered. There are a ton of other things to consider, too numerous to mention here in a comment.

Not to scare you, but just spend time here on the site reading about what goes on with loved ones trying to care for a parent or spouse with dementia at home. It's very educational and eye opening. If you decide to make such a change, please do so with your eyes wide open.

Best of luck, whatever you choose to do.
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