Is there any medical reason most Alzheimer's patients cannot be taken care of at home until the end? - AgingCare.com

Is there any medical reason most Alzheimer's patients cannot be taken care of at home until the end?

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Obviously, some patients require skilled medical care not available by the ordinary citizen caregiver, but doesn't most patients simply need to be kept fed, clean, warm, dry, and from hurting themselves?

If that is the case, and the caregiver has the means and intent to provide those things, is there usually any need for the patient to be placed in a nursing home at all at some point in the disease progress?

I ask because many of the questions noted involve problems with the Medicaid system. Can I avoid those problems by keeping my loved one at home?

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You can't skip Medicaid unless you are independently wealthy for entire rest of the patient's life. This excludes 99% of people since a lot of dementias take 15-20 years to progress to the end. There will be a limit on what is possible to private pay, and if the patient has outlived that amount of time and the assets, you are going to deal with the state Medicaid system. It has no bearing on whether the patient is at home or a facility.

But it's more than just dollars that make the decision whether to care at home or not. Emphasis on it being doable in SOME situations. You can't know what situation you're going to be dealt until you are 100% all up in it and help is a bunch of paperwork, a waiting list, and rigamarole away.

What I read on this board from people who are not aware of the care burden of dementia is shocking. The elders are suffering, the people doing care are suffering. There is always going to be that one statistical outlyer where things are great, the care job is not so hard, and everyone is able to cope. But don't walk in expecting that.

A nursing facility has a lot of pros to it. It's purpose built, so nothing the patient can do will harm the carpet, the furniture, the fixtures. No precious family heirlooms will be damaged or stolen. Nobody is going to fall down the stairs or flee in their nightgown in winter and freeze to death.

There are activities structured for the person and stage they are in. The food is prepared so the person can chew and swallow it. There are people there to feed the patient. Change them. Physical therapy is onsite. If the patient is on a feeding tube, there are staff to manage that as well. Some have onsite dentists and optometrists too. The doctors come to the patient, not the other way around. Not having to transport a dementia patient is priceless. Not having to transport a difficult dementia patient is beyond priceless.

By living in a community setting, the person is going to get a lot more social interaction and brain activity than by sitting at home passively watching TV. This is really important. There are tons of people who will talk to them, move them around, move their positioning during the day, and of course change & keep them clean.

If it were my husband, I would not want to see him have to leave our home, but at the same time, I also know that there are other factors greater than that one in the equation. I am not prepared to be the kitchen staff, cleaning staff, activity staff, bathing staff, changing staff, and still have anything left in me to be a loving wife, assuming there would be time for sitting and holding hands. I could not do all that AND keep up the house, the yard, the car, and any kind of life. We've talked this through and we both agree that when the time comes, don't worry over this decision. Put me where I need to be, and come visit me with pictures.
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jess66, there is no *medical* reason why a person with Alzheimer's couldn't stay at home until the end.... the only problem is if the family is able to pay to have full-time Caregivers around the clock.

My boss' wife had Alzheimer's and while he was at work she was able to go to an Adult Day Care, but that lasted only one year, her Alzheimer's advanced so he had to hire a Caregiver for 12 hours per day.... then he would take over the other 12 hours which meant he got very little sleep. There were days when he came into the office so very exhausted.

Eventually my boss's wife was placed on hospice.... but my boss wouldn't follow the rules of do not call 911 or take his wife to the doctor. He panic one day when his wife was in distress, and instead of calling hospice he put her into the car, and drove her to the doctor's office. She died in the car.

Thus families would panic and try to keep the patient alive no matter what. In a hospital or nursing home setting, the Staff will follow the hospice directives.
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So far I have been able to care for my Mama at home going on 3 1/2 years now. The past year I have had her on Hospice and we have a bathing aid three days a week and a nurse twice a week...they have been a godsend. I have had no other physical help and it can be grueling. Mama is totally bedfast and while she is not a large woman, she cannot move or assist me in gently rolling her when I change and bathe her which is frequently..It is hard, I will not deny...and there are days I question my reasoning for thinking I could do it..but so far I have been able to do it and I pray I can continue....

I have given up my career for now, so I know there will be repercussions later on as I am pretty much aniticipating reentering a workforce that very well may not want me anymore, but I am working at home to try and reduce the likelihood of that and am hopeful if things continue as they are I will not ever have to go into a physical office setting again...(trying to make something work on my own) I am also pretty content with simple things so I don't require a lot...Caring for someone at home AD is HARD WORK, but it is doable in some situations...
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Also recognize that most (not all) dementia patients are elderly and their spouse is elderly too. Full-time caregiving is an extremely demanding job, and not necessarily one an elderly person is qualified for. The children of the person with dementia may be also elderly -- we see 70 yo daughters with their own declining health trying to care full-time for 90 yo parents. Or if the children are younger they are in their prime earning years and need to continue careers in order to provide for their own old age, and/or they still have younger dependents who need their attention.

If you have a loved one with dementia, I sincerely hope you are able to keep him or her at home, if that is what you both want. Just realize it isn't always possible, even with the best intentions.
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There are often safety reasons why a person with dementia can't be cared for by one person. As Chicago pointed out, caregivers need to sleep! If that need can be met in a private home, with 3 shifts of caregivers (21 shifts per week), then care at home is more feasible. That is often more expensive than an elder can afford, and it is more expensive than Medicaid will cover.

Medicaid does not have to be involved at all if the person has the financial resources to pay for his or her own care, either at home or in a care center.

You ask if most dementia patients "simply need to be kept fed, clean, warm, dry, and from hurting themselves?" If you have been browsing the forum long, you are probably aware that these needs are very often NOT "simple" to provide for persons with dementia. You have no doubt read of the struggles to keep someone clean who is terrified of water or who will not accept help with hygiene tasks. To feed someone who insists on only eating licorice candy or insists they just ate or develops dangerous swallowing problems. Incontinence is not "simple" to deal with if the person with dementia is double your weight and strength and refuses to cooperate. You probably have noticed MANY posts asking for advice on how to get a loved one to change clothes, even when they are badly soiled and unsanitary.

Each case is different. It is possible to keep a person with dementia at home until the end, if that person's symptoms are within your ability to handle and/or you have the resources to have sufficient help.

My husband spent his 10-year journey with Lewy Body Dementia at home with me. He died in our bedroom, on hospice care, holding my hand. I am grateful this could happen. But I would never, ever judge another caregiver whose circumstances were different.

And, by the way, I was only able to keep my husband at home because he was on Medicaid. So keeping him home was not a way to avoid that system. So much depends on what you can afford financially and what your loved one needs medically.
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People do not need to use Medicaid homes if they have the means. This is why my mthr scrimped and saved all those years, to pay for her long term care. I am not trying to put it into trusts or transfer it out of her name before a mysterious 5 year look back period at all. I plan on spending it on her care. If anything is left over, that is what will be inherited.

We have her in a beautiful private pay only memory care, with leatherette furniture, bright sunshine everywhere, and complete lock down on doors and windows. She can't escape, and if the residents were in their right mind, they would not want to. Mthr has buddies she chats with all day, visits with before bed, and she is more social than she has been since college. Her laundry and floors are done weekly, her bed is made daily, and she does not have to worry about anything. She enjoys our visits to her, but does not know when we were there last. Because of this, she does not worry when we go on vacation. Every visit is fresh, and all news is new.

The home has been an absolute blessing, as we both still live our separate lives.
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You can, if you have a staff of people for 3 shifts. I mean you have to sleep sometime. My FIL was in great physical shape and could walk 5 miles. My MIL took care of him, but many times she had to call the police. He would get out of the house, once he beat a neighbors yarn ornament all to pieces, and once he got the tractor started. So, it is more about keeping the patient safe, than anything.

My friend's mother asked to go home, 24 hours a day. (She was home.) So, one day she got out of the house and ran to the highway. Now, she had never ran anyway in 70 years. It was after that that she had to be put in the nursing home.
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