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.
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.
hug!!
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.
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.
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.
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.
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.
Trazodone helped my dear husband get over the agitation and sundowning symptoms.
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