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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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Saying this with deepest respect for you and your difficult situation-

Although you seem to have a sense of protective vigilance in respect to your children, I don’t notice a whole lot of insight into YOUR protective vigilance for yourself.

If you know that your husband is experiencing the progressive and never reversible symptoms of dementia, why do you continue to seek his understanding concerning his behavior toward you?

His input about his care and management is no longer a trustworthy indicator of what you need to do to develop and maintain a new, healthier life style FOR YOURSELF.

NO ONE with dementia has EVER come to their loving caregiver and said “I realize that I’m becoming more and more confused and hostile and difficult to manage and I’d like to find someone to stay with me so you can have a well deserved break.

If you prefer, please start looking for a nice place for me to live and receive care for my progressively deteriorating condition”.

NO ONE. EVER.

Why? Because the ability of dementia patients to use logic and reason declines as cognitive functioning declines.

So YOU must find out what he AND YOU can access for help.

And that’s why YOU, as his caregiver, must do the research and find the help and establish your NEED for relief. And that’s a terrible shift in your thinking, and his. But as his caregiver, you must.

PLEASE READ what others have said here. Their advise is offered because we’ve lived this and learned from living it.

Not only do you ‘deserve’ a break, you MUST have one, and then after an interval of caring, another and another.

Because SELF CARE is the hardest part of giving care, and also the easiest part to overlook.
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bundleofjoy Dec 2022
love, love what you wrote. so many points apply to me, too.
hug!!
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First..I could have written much of your post. My Husband was also diagnosed when he was about 63.
Being a full time caregiver is difficult to say the least.
You say your "kids are really too busy to take him so you can have a few days. And you say you don't feel they think it is important or they understand the hardship...."
Have you actually talked to them and told them that you NEED a break?
I have often said 2 of the hardest things about being a caregiver are 1) ASKING for help and 2)ACCEPTING help.
Have you looked at different resources?
*Is there an Adult Day Program that he can attend a few days a week?
*Have you considered hiring caregivers a few hours each week? (Trust me 6 hours 3 days a week is pure heaven)
*Is your husband a Veteran? If so have you contacted Veterans Assistance Commission to let them help you, they can determine a % of service connected disability and that can increase the amount of help. But even with no disability he is still eligible for services.
*Contact your local Senior Center see if they are aware of any programs that may help.
*Local Area Agency on Aging may also have services.
*Contact Alzheimer's Association and ask what services and help is available in your area. (and you can contact them 27/7/365 for help)
*He may be eligible for Hospice. You would have a Nurse that would see him weekly, a CNA 2 times a week and you get all the supplies and equipment that you will need.
This is not an easy journey and you can not do it alone.
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Hi Shirley & welcome to the forum. I'm sorry you are in such a position, first and foremost. Why do your children feel you don't need a break from all this stress you've been under for 6 years?

I don't know of a resort for burned out caregivers, but how about you check yourself into a Resort of ANY kind for a week to pamper yourself? Let your children know you plan on doing so, and ask that they come and look after your husband (DH) for the time you're gone. You can't rely on friends to take on such a role, and maybe not even your children if they don't understand all that's involved in caregiving for an elder with dementia. It's a lot. Ideally, HE would go to respite in a Memory Care facility for a week or two while you rest at home.

This isn't really about 'what he would do for you' if you were saddled with dementia, but about what you are CAPABLE of doing for him at this juncture. If you're burned out and exhausted, then you need to recognize that fact & take some action. Do you have POA for DH? If his doctor deems him to be incompetent or he had a formal diagnosis of dementia, then you can have him placed in a Memory Care Assisted Living Facility w/o his consent, if you wish. This may become necessary at some point down the road if/when he becomes too much for you to manage alone at home. Or if he becomes violent or aggressive towards you, God forbid. This sometimes happens with dementia, unfortunately.

I suggest you read this 33 page booklet (a free download) which has THE best information ever about managing dementia and what to expect with an elder who's been diagnosed with it.

Understanding the Dementia Experience, by Jennifer Ghent-Fuller 
https://www.smashwords.com/books/view/210580

Jennifer is a nurse who worked for many years as an educator and counsellor for people with dementia and their families, as well as others in caring roles. She addresses the emotional and grief issues in the contexts in which they arise for families living with dementia. The reviews for her books are phenomenal b/c they are written in plain English & very easy to read/understand. Her writings have been VERY helpful for me.

The full copy of her book is available here:
https://www.amazon.com/Thoughtful-Dementia-Care-Understanding-Experience/dp/B09WN439CC/ref=sr_1_2?crid=2E7WWE9X5UFXR&keywords=jennifer+ghent+fuller+books&qid=1657468364&sprefix=jennifer+ghent%2Caps%2C631&sr=8-2

I think you need to have a real honest talk with your children, whether they're busy or not, and let them know what's really going on in your lives; that dad has gotten pretty advanced with his dementia, that you're exhausted and burned out and at a loss about what to DO. Maybe you can all put your heads together and come up with a plan or some ideas to muddle through this situation. Once you let them know the truth of the matter and that you need their HELP, maybe then they will comprehend the seriousness of what's going on; it may be that they simply don't know.

An honest talk with your husband about how exhausted you are is not a bad idea either, to make him understand you need to either bring in HELP in the way of caregivers now, or, he needs to agree to move into Memory Care or at least go to respite care for a week or two to give YOU a well needed break. Compromise is key here. It's hard to get through to someone with dementia, but if he's lucid enough to demand this and that, then he's also lucid enough to understand YOU are BURNED OUT AND NEED A BREAK. What sort of help would he like you to hire? If you drop dead one day of exhaustion, how will he feel THEN? Not so good since he loves you and can't live w/o you.

I wish you the best of luck getting away for a little while to rest and recuperate yourself. The stress of all this can easily make YOU sick and that would be a terrible thing. Sending you a hug and a prayer for peace.
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You don't.

One person is simply not enough to care for such a person, especially another senior citizen.

You'll need to hire aids or put him in a facility. Whether your husband "stands" for it or not.

The alternative is that you'll likely kill yourself trying to caregive alone, and then he'll really be screwed. This happens all too frequently.
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One "resort" that is all too common for people in you situation is the hospital, after you have ruined your health and caused an injury by trying to go it alone. You can't let a person whose logic is impaired rule the roost, you need support! You must bring in outside help and tell him it's for you not him (truth!). Maybe start with a cleaning person so he gets used to the idea and move on from there so you can get regular respite away from the home... just so you can go to the store, the library, the senior's centre. Adult day care for him is another option, it can enrich his life and will also help to break his total reliance on you as his sole caregiver.


and... I know caring for a parent is not the same as caring for a spouse, but I do understand the fear that leaving them in the care of someone else or (god forbid) placing them in a facility will be a disaster and lead to their demise. Yes there would be an adjustment period, and yes there would be grief over the many changes, but people are surprisingly resilient and the positives often greatly outweigh the negatives. Or perhaps consider a move for both of you to a more supportive environment; a complex with multiple levels of care available.
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He is of medicare age an therefore there is respite care available for him to get your rest. Medicare will cover most of the cost of up to 5 days in a row of respite care in a hospital or skilled nursing facility for a person receiving hospice care. Medicaid also may offer assistance. This is available one a month so this can be very helpful. Don't feel guilty and he must accept that you need rest. Go for it. Contact Medicare.
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This is so hard. Dementia is such a terrible disease. My mom just moved (against her will) from my house to assisted living due to her continuing march down the dementia road.

My mom didn't want caregivers either. My first step was a cleaning lady. I suggest you do the same, ASAP. Don't delay getting yourself the help YOU need. You are doing way too much and are burnt out.

My adult kids don't want to hear much about their grandma's decline. But his own kids? I think they have a right and perhaps a need to know what is actually going on. If they are too busy to do anything to help, so be it, but they should know and at least be able to offer you some moral support. Wicked busy or not, I would think that if they care about you guys, they should be able to carve out a few hours here and there to give you a teeny tiny break. If they can't/won't, don't be mad. Some people just don't want to do it and that has to be OK.

But you need to get some care for hubby. Yesterday. At this point it does not matter what he wants or will tolerate, etc. He may not like the changes coming his way, BUT neither do you. They are hard on BOTH of you. As the competent one, you actually have more say than he does as he does not understand or recognize his shortcomings.

Decide what YOU prefer. Homecaregivers? You can start small and add days and hours as needed. Use the time to go behind closed doors and rest. Or better yet, once the caregivers are trained, etc - get out of the house. That's what I did and boy did it help extend mom's time here at my house. Only by 6 months or so but I think that was a gift to her.
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KPWCSC Dec 2022
I totally agree that even home caregivers with you still at home can be huge. Originally I thought it was wasting the respite hours I was getting from our local council on aging. I now value those few hours because it is someone to intervene when my husband needs something and not interrupting whatever I am doing as often (computer, paying bills, naps, yard work, etc.). Later I was able to run errands during the respite hours. Male care givers can be a gem because it gives my husband some "man" time and conversation. However, they of course are not as common.
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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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I’m glad you reached out. Lots of excellent advice below. Please guard your own well being. I’m afraid you’ve gotten so busy caring for husband, and by the way, if he can’t tell you, he’s very blessed to have you, that you’re neglecting your health and needs. No more of deciding things based on what he will stand for. Make decisions based on what’s best for you both. Has his doctor advised on a med to calm the anger? Have you been blatantly honest with your adult children about how hard this has gotten? Even if they can’t come often, they need to know. Perhaps they can help you in finding resources. Is there an adult day program for your husband to attend several times a week? Yes, even if he doesn’t want to. And please don’t discuss dementia with him anymore, he’s not capable of understanding and it will only frustrate him. Look now into memory care options, even if you’re not there yet, it’s important to know what’s available. Many memory care residences offer short term respite care where your husband could go for a few days to give you a break. And you really need one. I wish you peace
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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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