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Is it possible to start with 2 hours per day with other caregiver (if children are not physically available, how about ask them to contribute financially for hiring), assuming you do want to take care of him at home? You may tell him you need to buy something good for him and will be right back so he wouldn't get too nervous without you around 24/7. At least others (kids, charity and funds?) can start help you financially sooner if that's the problem, rather than wearing out yourself.

While making small-step change, you may take a break and meet/talk with others to plan a long-term arrangement.
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You can arrange for him to stay at a local memory care nursing home for a period of time, but you’d have to pay out of pocket. When I was touring nursing homes, one of them mentioned that they had a person come every summer for the entire summer so that the family could get a break.

I would look into options for short term respite with the idea that this may turn into a long term placement. And maybe that’s the safest choice for both of your well-being.

The situation will only progress, please explore placement options and if possible, get a consult with an elder law attorney so you play your cards right financially.

Sending support. 😘
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OldArkie Dec 2022
Kristen, this is sound advice for someone with unlimited resources, however, if you are of limited means, your only recourse for professional care is to apply for Medicaid. Also, if you live in a smaller community, there likely isn't a big selection of adult care facilities to help you, and those you do have are often so short of help, they can't help you anyway. Many adult care facilities I visited told me they simply can't hire enough people to staff their services!
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Please confer with his PCP immediately and have your husband formally assessed for level of care needs. Discuss the options for his care; placement in probably a memory care facility or other level of care or possibly if you want to TRY ongoing in home care have your husband assessed for hospice appropriateness; if he meets hospice admit care requirements, having hospice will give you a range of caregivers coming into the home( RN, CNA, Social Worker, Chaplain, Volunteers etc) AND, a " respite" option of 5 days at different intervals where hospice places him in care facility for you to " have a break". Furthermore, the hospice team can help you further consider care needs and if/ when to place him in memory care unit. This is all for both his safety and yours. Do not concern yourself with whether he " will allow someone in the home" or other care needs; you have described a person who is not cognitively capable of making appropriate,rational , best interest decisions. You must not let him nor children etc " guilt trip " you re needed decisions.
Have a frank conversation with family . Consider, what would happen to him if you get I'll ? Making hard decisions now is in both of your interests and safety and we'll being.
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stephm1 Dec 2022
My father qualified for twice a week respite from the VA, so you can check that if he qualifies. The caregivers know how to deal with the situation, and you get a chance to get out - a necessity.
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Shirleyo: Please have a conversation with your children about the respite that you require. You cannot and should not take care of anyone else unless you take care of yourself first. The analogy of putting your own oxygen mask on first before you put someone else's oxygen mask on applies.
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I am in the same situation but with my dad. I just lost my mother this year to kidney disease and my sister last year unexpectedly. Her and I had promised to help each other when this time came as we (I now) also have 2 brothers. Though they know what I'm going thru are " far too busy" to lend a hand. Though if I schedule time with them they will come for a couple hours and give me a break. My dad is still pretty early on in his dementia and can for the most part take care of himself. But I have learned that I DO NEED TO GET A BREAK not only for him but for myself!!! I can get overwhelmed and agitated about the whole situation and start holding onto anger and resentment towards life, my dad, my brother's. It's not a good look on anyone. I've started small just a movie once a month with my phone turned off!! But now I am contemplating one full day!!! As soon as I have my plans figured out as to WHAT I WOULD LIKE TO DO...I will schedule the time with my brothers....which is hard b/c I still feel so guilty, but I know by reading from this site that it is a NECESSITY!!! My brother's will come begrudgingly but they will come. And then they'll see AGAIN how taxing it is on a person and for about a week they'll give me a few calls to check on me. I know as this disease progresses it will get worse and I'm working on looking into other options whether it be a pt caregiver or a daycare or some such thing. I wish you all the best....and please even if it's just 2 hours at first ....take care of yourself or sooner than you realize, you won't be able to take care of your loved one!!!!
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Have a serious talk with the children. Let them know you need a few days a month to yourself or you will wear out to the point you can't do it at all. Younger folks do have busy schedules - just like anyone at any age who can still get around. Your children (not their spouses) should be helping you a little.

If they come out and say they won't do caregiving, then your options will revolve around what you can afford: In home care or a respite placement for a few days. If there is money, hire some people to come in and help you around the house prior to actually being gone for several days. He can be introduced to the new person and have some time to be familiar with them.
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Here’s another thought: Say something happens to you and you end up in the hospital. Now your kids have a problem on their hands. They have no idea how to take care of Dad.

You really should have one of them (at least) know how Dad works on a day to day basis - no matter what stage his dementia. If they are familiar, and at ease, with him they will be able to handle your hospitalization better.

You deserve time away from the stress you’re living under. Tell them the time has come.
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OldArkie Dec 2022
Becky:
You make it sound easy to enlist help. If you get volunteer help, they will want to do it at their convenience and your spouse (if they are like mine) won't accept just anyone to care for them. People (including your children) have their own problems to handle, and their families aren't as concerned with a demented in-law as you expect them to be. Children sometimes don't really feel the obligation you wish they did, especially when they get old themselves!
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I got a book that saved me with my MIL. I think it was called “The 36 hour day” . It was full of stories about how people creatively solved caretaker problems. I learned to go around problem’s rather than head butt.


you cannot do this alone. Build a team with whatever professional care you can get and also family, friends, neighbor, church members….accepting help can be hard but there are people who can help. We all feel good when we help others so let others get that good feeling.

And keep some time for yourself and maintain friendships.
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You need to get in touch with your local County Office on Aging...many have funds set up for regular respite care , such as a long weekend or regular days each quarter where you can get away and recharge and rest yourself under a federally funded Alzheimer grant ..hopefully that is still in force. It may have been abolished during last administration ...hopefully not. Its been a lifesaver for many caregivers dealing with this awful disease in loved ones.
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You need to admit to yourself you are not able to do it alone.
Strangers, caregivers will be needed sooner or later.
Your husband is in no position to dictate that, you are in control.
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Please consider ways that you can get respite and others can help lighten your load. Ask family, your friends, members of faith community to volunteer to stay with him for a couple hours per week. Yes, consider hiring a sitter or "helpers" to lighten your load - housecleaning, yard service, grocery delivery... Consider enrolling him in an adult day program (usually Monday - Friday days) so he can be cared for and you can care for your own needs. Attend to this now. You need others who can care for him, know his medications and schedule in case you get sick or injured.
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re:'He would do that for me'...knowing What you know, would YOU want him to do that for you(if roles were reversed) or would you want him to be able to take care of himself also?

My husband has been in an Adult family home almost 2 years and the caregivers there are his family. His dog and I remain loyal and visit even though he doesn't know us.
Here's the latest revelation I had.
In planning 'tips' for his family of caregivers, I asked the manager how many to plan for....well, it takes 9 people to give him the 24/7 care(yes, there are 4 others in the home who also are cared for)...so who the heck did I think I was to be able to provide the daily care that these NINE people provide??? It makes all the difference in the world that the staff goes home at the end of shifts...my husband deserves care from someone who hasn't lost patience.
(The last two months he was at home, I was screaming at him more than anything else....he did not deserve that and I could not stop)
Blessings to all you, whether you are 24/7 or have extra hands(and hearts) in caring for your LO. Please take care of yourselves first so you CAN make the decisions ahead.
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I could have written your letter. I'm about at your point. He can still check the mail. It's an outing for him and the dog. What happens to the mail? He hands each person their JUNK mail. I found out he withheld mail from our financial advisor which was addressed to me. If I hadn't questioned why the information hadn't come yet he informed me it had and he had MY mail.

He talks nightly in his sleep. Our daughter heard him last night telling someone how to shoot specific types of guns. Scared her to death. This has me concerned since he refuses to tell anyone where the keys to the gun safes are. I've got to find out how I can get him to turn over the keys so I can at least put an additional trigger lock on his guns to keep us all safe. His neurologist just says "he's acting out his dreams", well what's going to happen when he really does act out his dreams?

I've reached the point that he's going to be placed in adult daycare a few days weekly after New Year. He's a 20-year veteran so on one of the days he's in daycare I'll go to the VA and see what services they will provide. Our daughter does live with us and she does take him out at times whether it's shopping - really gotta watch what goes in the cart, it's like having a kid with you.

I've found my temper runs short at times more often than not many days. I have my own health problems and it's difficult on some days to care for him without losing my temper.

I take him to a well-known Memory Care Facility for Alzheimer's in Las Vegas. I've lately wondered what happened to their social workers. Now I'm wondering why his provider hasn't sent me their way. The adult daycare I came up with. The VA I read on this forum. That's just 2 ways I'm trying to get some time for myself, whether it's time to go out, stay home and sew or go to a sewing class, I know now he's going to be cared for, not drive our daughter crazy either. We both need our time away from the stress. You do too.

He was hospitalized a few months ago. At that time I also noticed his memory going downhill. It's continuing to fail faster than I realized it could. Fortunately, we had a Trust in place with all of the proper full POA when the time came. No matter what I asked his doctors wouldn't talk to me. I pulled out the POA and presented it to the VA facility he was in. That also placed it in his outpatient records also. Now when I take him to his cardiologist there he'll talk more readily to me and let me make some decisions on his behalf. You don't want to have to go to court or have his doctors certify him incompetent. I know I didn't. One problem was avoided. Avoid the problem for yourself and speak with an attorney who is trained in elder law about how you can do this. Tell your children what you're doing, and tell them that caring for their father is too much for one person 24/7. As soon as you tell them about the full POA they'll probably come around or start asking what is really going on with dad.
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It starts out slowly, caring for someone and excusing the anger. You can understand he isn't "himself" but you have to live with the effects of it.
You can only give so much and it will effect your health. Then what is in place to care for him when you are in a hospital?
He is dependent on you and so it will be hard to shift care to others sharing the load. Research available day cares or in home care and you will have to say " i have a gynecologists' appt ( no you can't come) that I have to go to so this person is here to watch the house..bye"
Are there any men's groups or hobby groups he would go to? Would a friend take him to a movie every few weeks?
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