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My husband of 54 years and I grew up together. We have two children that are both living out of town along with six grand-
children. We had saved and planned for retirement like most couples but the year my husband turned 66 he was diagnosed with dementia. He had been having memory problems and personality changes. There was anger where he had always been so easy going. I had also retired and stayed home becoming his caretaker. At first, it wasn’t too confining but slowly began to get worse. He started forgetting how to get to where he needed to go. He had problems pumping gas and using a credit card. He couldn’t change my flat tire. He was having problems with the simplest issues. He was still mowing the yard and doing a good job and he needed to stay busy or he would get irritated. He would mow sometimes even if it didn’t need it. As time passed he became more and more dependent on me. I read all I could about the disease knowing that I needed to be patient and understanding because it wasn’t him who was yelling at me. He would just change. I didn’t realize I was probably causing some of his anger. I had to learn how to say the words differently in a different way. Sometimes I didn’t make it. I truly need a break; I realize that now. It’s been he and I 24/7 now for six years and I don’t know if he’ll be ok while I’m away. He tells me he doesn’t think he can make it without me, he loves me over and over all day. Our (kids) are really too busy to take him so I can have a few days. I don’t feel they think it's that important or they understand the hardship a caregiver sees. Is there any suggestions for me short of being admitted to a “Resort for burned-out caregivers”. My husband would never stand for a stranger to come into our home to stay with him. He doesn’t talk about his dementia at all unless I bring it up. He doesn’t have any old friends he knows anymore that would stay occasionally. It’s strange how your friends go away when you get dementia but I do know they don’t understand how he’s going to react toward them. I am at a loss what to do at this stage of the disease. I plan on taking care of him for as long as I am physically/mentally able. He would do that for me.

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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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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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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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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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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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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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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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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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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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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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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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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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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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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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Please be aware if he has violent outbursts you can be in danger from your husband. There was just. A scenario like this about a man with dementia who killed his wife on Thanksgiving. I know you want to care for him as long as possible but you really need help. Whether that is hired help to come into the home a few days a week if you can afford it or you have to place him in a facility. He is sick and cannot dictate what happens at this point.
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If you can I would try to get one of your children to care for your husband while you are away or see if they can share the task? It is really important that they know the true situation that you and your husband are in, particularly as difficult decisions may have to be made in the future. If they don’t have a full understanding of your husband’s condition and the strain of caregiving they may not support any future changes that need to be made to your husband’s care.

You deserve and desperately need a break. See if your children will step in. Work on persuading them, Emphasise that this is what their Dad would like. Good wishes for your future. You have done so well to get this far.
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This issue really divides families because not everyone wants to admit how much they fear getting old or sick. Our country doesn't really embrace the elderly and the government mutes us from getting medical and psychiatric care for this portion of our population. To dump sick patients on family members is beyond bizarre because it creates a crisis and makes many family members go into hiding. I just know that Karma will come to visit them, if they're fortunate enough to get old. All you can do is take care of yourself so that you can keep a watch over him and be a constant visitor who ensures the quality of the life he has left. You do not need to be a round the clock caretaker to prove your loyalty and love. You can place him near to you or you can figure out how to live separately, but close in a Continuing Care facility. Take yourself out of the caretaking equation; there's no need for two people to die from one person's disease. Do not give him choices that include you. Take him to visit facilities as close to you as possible and let him choose which one. Daycare options will give him options to become familiar and give you time to vacation, get spa treatments and meet with an Elder Law Attorney for sage advice.
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MeDolly Dec 2022
Your comment "You do not have to be a round the clock caretaker to prove your loyalty & love".
Spot on, never to understand why people equate the two.
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Part of your job as your husband's care taker is to build in break ties for yourself. So many good ideas here. Look through the possibilities and think what kinds of part-time help or day programs or respite stay overs might work for you. Your husband's needs will increase and you need a plan so you can maintain your own health and sanity. You will not be of any use as a care taker for him, if you get sick or have a breakdown yourself.

Plan independently of relatives or "old friends." If any of them stop by, that's a nice extra, but it cannot be the Basic Plan. Investigate resources available in your area so you know what your options are. Ask the Alzheimer's Association for ideas and resources. They are very helpful for all areas of Dementia and Dementia Care.
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Loved your answer. I’m in the exact same place with my husband .And I’m the type of caregiver who will stay loyal at my own detriment . Thank you for your wisdom
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You need a break. You cannot care for him if you do not care for yourself. You have a couple of choices. You can either hire a caregiver to come in to your home for a weekend once a month or check him into a facility (hospice or nursing homes usually have rooms for respite care). If you choose to have someone come to your home, have the person come to meet him in advance. Perhaps hire a male, and tell you husband that this gentleman is a new neighbor, a friend from church, whatever, and that he would really like to spend the weekend watching sports, discussing yard work, or whatever it is your husband has an interest in. The other option is to send him to a facility one weekend a month, and tell him the doctor is putting him in the hospital to monitor him for a few days. Tell him it is a sleep study or calorie count or whatever you think he will accept. Also convey this to the staff so they can reinforce it. Give him a calendar and a clock so he is reassured of the date and time you will return. You are in my prayers.
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No one has mentioned the term “show timing” (which I actually learned on this site). I’m in a similar situation but have been getting help a few hours a week so that I can do things I like to do with friends. However, my husband constantly surprises me by acting “nearly normal” with other people and sometimes even with our children. At first, you begin to feel as if you’re making stuff up and it’s not as bad as you think it is! But it’s “show timing” and you’re not crazy and you’re not exaggerating! Just another exasperating dimension to dementia and care giving!!
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I am in a similar situation. I am only 63 and was looking forward to retirement. Now after a forced retirement I take care of my wife with dementia. she can not walk or stand on her own. We have no kids and I am her only care giver. My retirement years were shattered. Now I am scrambling with how to financially take care of her. The costs are rapidly draining our savings. Unfortunately our system i geared to bankrupt the couple leaving the surviving spouse to live in poverty.
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sp19690 Dec 2022
The scary part is that after she passes what happens to you if you use all your savings to help her? Ironically you will be the one to end up in a facility if your health deteriorates or you injure yourself helping her and wind up needing help yourself because you become disabled. Please look into how to protect some of your money so you are not completely destitute.
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My husband had a wonderful physician who developed early dementia at the age of 50. His wife, also a physician and co-partner in the family practice they owned, had to report his declining mental capabilities to the Board of Medicine, take over the practice by herself abruptly and provide sole care for family and her husband.
She journaled her experience and realized her notes were of help to some of her patients in similar situations. She wrote a book, "Surfing the Waves of Alzheimer's - Principals of Caregiving That Kept Me Afloat". And, has a website, www.reneeharmon.com. The struggle to care for loved ones with declining mental and physical capabilities is no respecter of persons! Take all of the wonderful suggestions you find here and everywhere and begin trying them out. You will find somethings that helps, but help you must find if you want to continue on. God Bless!
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There are many good ideas posted but I agree you need at least a part time caregiver or enroll him in an adult daycare.

My parents and husband's aunt balked over strangers in their house too. We start saying the caregiver was there for housekeeping, cooking and laundry. Over time they adored their caregivers and became comfortable with the duties changing.

Explain to husband you need help so you can care for him. If the stress robs your health where will he end up?

Yes, you need help and breaks. You have a life too. Running errands and going to church can cover a lot of time away to maybe reconnect with friends.
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I was my husband's caregiver for nearly 10 years. We hired a driver to take him 20 miles to an adult day care in another town 3 days a week after I couldn't do it 24/7 alone anymore. Also during the last two years I placed him in a memory care place for two weeks each year. Two weeks was their minimum. It gave me time to visit my own mom as well as have a break. Finally, we had hospice come to our house several times a week when he was no longer mobile.
Trazodone helped my dear husband get over the agitation and sundowning symptoms.
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If he hits you, you need to get him into a home.
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ConnieCaretaker Dec 2022
If he hits you, you must call 911, and get him to the hospital by ambulance. I plan to press charges if it happens to me, because I know that's the only way to make it an emergency for placement. If it happens, I will video him if he is in a tirade and/or take photos for documentation.

I have learned, on this forum that I MUST refuse to take him home or even take responsibility. If the hospital can put him in your car, they will be washing their hands of the crisis. Always remember, "NO" is a complete sentence.
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Your post s MY post, however m only at the 2 1/2 yr mark, so we aren’t doing ok badly. But I know what’s coming.

As someone else here said, it’s not about you deserving a break…you must take breaks. Caregiving is one of the hardest jobs, and even the most hardy, even keeled, saint of a person can experience burnout. You need breaks.

You already know what a battle this disease brings, You stated your husband won’t tolerate strangers in the house. The thing is, he doesn’t call the shots anymore. So either have one of your kids give their mother a break and come take care of their father or hire a caregiver to come into your home. You may want to be there for the first visits of a caretaker, to ease his discomfort. It also may take finding the right caregiver, perhaps a male.

We have a men’s organization who is filled with middle aged men who will come for free to spend some time with dementia people. In our area, it’s the Knights of Columbus. However I’m sure there are other groups and organizations and church groups who will do this.

It’s a matter of finding the right match for your husband, so he will feel it’s a treat to have a visitor. This may take some time to find the right match, so I’d really ask if one of your kids can come for a visit, while you go visiting elsewhere.

I do know what it’s like 24/7 to just be you two. That’s where we are now. My husband has had dementia for more than a yr now, MCI for almost 2 yrs prior. He has trouble with the simplest of tasks. But as I said, we are still early, and I don’t feel bad burnout yet. I do belong to 3 online caregiver groups and I did have to start an antidepressant. All help some.

Dementia people rarely talk about their dementia. And you aren’t supposed to remind them of it either, because all it does is make them feel bad or more confused.

I know it’s a matter of time when I cannot take care of my husband. I won’t be able to lift him or anything. I’ll need to hire help because I won’t have any choice. I’d prefer not to move him into a facility, but again, I may not have a choice. We are totally alone, with no kids or family.

Find the right help for both of your sakes. Good luck! Keep us posted.
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One possibility is to find a good caretaker. Present that person as someone to help you with housework, etc., you can plead age, tiredness, wish to paint, whatever. A good caretaker can befriend your husband; they will have had experience with this. You can make this a necessary condition of employment, which it is. If he is difficult, just point out that he is being impolite and should be nicer to your help, for your sake. A second possibility, is some respite care at a local memory care facility. Some will let you stay there while the person adjusts. They are expensive, however.

Perhaps, most important, is that you face that you may not be able to permanently care for him, for lots of reason. The most risky is that you become suddenly disabled. Putting off getting some help increases the odds of this happening. Please, investigate resources, become familiar with costs and your finances. Consult an elder care lawyer to go over your possible scenarios. Talk straight to your kids who could be left with this situation while being mostly ignorant of the facts. I think time for an emergency family meeting.Ask them to spend a little time "discussing" planning with their father. A counselor might be a blessing to help with this meeting, there are social workers adept at these problems. They can explain to all what is happening and why the status quo no longer works. You are understandably putting off a difficult future, but it will only become more difficult by doing so. You can present this all as your problem that you need help to handle, that is the case. It isn't pointing the finger at your husband and saying "It's your dementia." It is a change in the situation that requires the family's and professional help for everyone's well being.
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You need to create some breaks for yourself. When you get these breaks, plan your time wisely, so you’re not just driving in circles, worrying about him snd wanting to come to check on him (this would be natural). Make a list of true breaks, things that will relieve your stress and have nothing to do with caretaking. Shopping for pleasure (not errands), going to a movie, getting your nails done, attending a lecture or cultural event, taking a hike, etc. The “answer” to what relaxes you and takes you away mentally can only be answered by you. These activities can be free of charge. Start making a list.

When the going gets rough, you find out who your friends really are and aren’t. That includes your children. Everyone is there for the good times. Few are there for the bad times. Make a second list, people you could trust to stay with and care for your husband for 3 hour periods of time. Contact people on the list to see if they would step in to give you s break. That includes your children. Don’t expect a lot of takers.

If someone does step up, schedule them for a three hour slot. Have those slots in mind before you make the ask. If they can take him out, great. If they can’t, get things ready for them. Find checkers, playing cards, the TV remote, prepare an “easy” meal or snacks to have available. Make this “babysitter ready” for them to set them up for success so they don’t have to necessarily figure out the entertainment program if nothing is working. When you return don’t flash them your fancy new manicure (even if that simple treatment felt like a lifeline) or they won’t ever return.

If there are no takers, hire a CNA to come in or take him to a daytime adult daycare program. Review expectations with tge CNA so the session is therapeutic for your husband. A CNA used to come to help my dad with workouts and a shower, which was very helpful for both dad and me. They developed a close friendship and enjoyed the time together.

Another alternative is to find another woman similarly situated who might be a compatible friend for your husband spend some time together as a group of four and it it seems to be working out, take turns letting your husbands spend time together with one of you on a break.

If your husband needs more care than you can handle, there is no shame in hiring help for more hours or finding a suitable nursing home. You need a sustainsble solution. You can spend as much or as little time there visiting (as much as you care to) without shouldering the responsibility of his safety and personal care. Your kids cannot grumble, you let them know you needed help.
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Lots of good advice, but here is another perspective: your kids need to understand that they are losing their dad and you need to tell them how you want them to deal with it. Maybe they don't live close by, but ask them to video chat with you and Dad every day. They can alternate days. They need to see for themselves what you are dealing with and you both deserve this show of support. They may need to introduce themselves with each call: "Hi dad, this is Peter!" Then ask questions he can answer: "What did you and Mom do today? Did you go anywhere? Did you have a good dinner?" Tell him about themselves: "I work at the Bank of Gooberville, and I think I might get a promotion at the end of the year." They need to learn to repeat themselves so that Dad hears it enough for a little to seep in.

Send emails and pictures of themselves (and their families?) daily. Send old family photos of themselves with you and Dad. Repetition is good, not bad. When Dad says "He sent that same picture a few days ago," you will both appreciate that he remembered it.

Tell them you need them to visit regularly. If they live nearby (< an hour) tell them you expect and need weekly visits. This is for you not just Dad. You need their hugs and attention. Stupid as it sounds, they can be jealous that Dad gets all of your attention, and their families get none. If they live further away ask for monthly visits. Tell them you need their help. Don't just ask them if they have time. You have more than one child, so they can rotate weekend visits on a regular schedule.

Have a family meeting, on Zoom if necessary, to make sure they all know what to expect going forward. Do this monthly. Discuss the possible logistical and legal issues, such as what happens to Dad if you become ill or incapacitated. You need a family plan that you can count on long term, and they need to understand that roles have reversed: as children you took care of them and were responsible for their wellbeing. Now they must be ready and able to help take care of you. If they don't know how, recommend that they find resources to learn. This isn't just about your needs now. All of us will eventually need to care for another person and it is a requirement of a mature adult to be able to do so.
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