My sister died recently; Alzheimers for two years plus; during this time half of her family weren't involved but the other half I sympathized with, helped as best as an 80 year old can; visited her often and constantly texted with relatives about how she was and they did the same; eventually she had a stroke, which she really didn't recover from. My husband of 58 years was diagnosed with dementia towards the end of my sister's life. I assumed there would be some communication with me to help me through this difficult, sad time but I was wrong; an early text assured me that I was strong and could deal with it. In another call with someone I was told you need to be up and cheerful. I've done well in the first year, I was feeling overwhelmed with everything even though I am so glad that we are retired and I can be at home with him and I did get myself better organised and it's much easier than it was. A family member sent me pictures of an award he received. All I can think of now is writing to that person and tell them that I can't believe that they have all forgotten the awful time we all had in trying to stick together and do the very best we could for my sister and I am now needing just a little bit of that support now that my husband and I are going through this. Should I send an email saying this; I don't know?
Why don't you just resume communications and ask how they're doing. Tell them you miss your sister and you know they do too. Tell them it's been a challenging year with your husband but you're handling it better now, you'd like to be back in touch, and you hope they'll keep you and him in their prayers (or thoughts, or hearts -- whatever works for you). Don't do it in a scolding way. See where things go from there.
I'm sorry you and your husband are going through this. Compliments to you for doing the work of getting organized and out of the overwhelm stage.
If you offend them, they may hold the grudge forever and have nothing to do with you. Is that okay with you? Or they may rush to your side and beg to help bathe and feed your husband. Is that a platform on which you can rebuild, and would you like that? (And is it even likely that they'd rush to your side to help?)
This is something we can't answer for you, but I suggest that you think over your options carefully. What I've noticed on this forum and in real life is that we cannot count upon family to help with caregiving. Nothing will make family disappear more than a request for support. And that's the truth.
Ask your hubby's doctors if they are aware of local support groups as well. Contact senior centers in your area and your local council or agency on aging.
I wish you best of luck. Your family is likely close as they have ever been; these things don't much change with illness.
Family dynamics are so difficult to understand. Bless you for being available to your family, and especially your sister. The others may not understand that you need help, and perhaps a gentle reminder will work. If not, I believe you’ll be in the thoughts and prayers of many on this forum as you continue to navigate your husbands care. My sister eventually had to find a SNF for her husband -it was a hard but necessary decision. He didn’t like it, still does not, but she could not do the heavy work any longer. You may have to get there.
The most useful book I ever read in college was Aristotle's "The Art of Persuasion". I learned that if you want to get someone "on your side" or to see things your way, you never start by offending or angering them. Sometimes when I'm frustrated or angry with someone, I will compose an email to them saying exactly what I want to say and the way I really want to say it. I never put an address in so that I can't accidentally send it. I let it sit for a day or two, then go and read it. Then I mostly delete it and write a far more productive letter.
Better yet, if you can call people do that instead. Doesn't have to be long, just a quick "catch up" or "check in". People who have never been a caregiver really can't relate fully to what one goes through. Patiently educating them might be very fruitful for you and your husband. Just have tempered expectations.
I'm so sorry that you've had such a difficult time. Everyone on this forum has "been there, done that" so you are in good company. May you receive peace in your heart.
I took care of my mom in some form or another for 20 years, after my dad died of cancer at 68. As the years passed, mom developed Alzheimer’s Disease. I did my best to help her, but then in the last 3 1/2 years of her life, I needed help, and so I placed her in a nursing home, but I saw her every day, took her on car rides in the country, took her on out-of-state vacations with me, and took her to the movies, until the darkness and experience of the movies scared her.
Except for my younger sister, all of my other relatives are 3,000 miles from me. My sister lives a couple of hours from me. My sister did the best she could to help, though she was raising a daughter in the last years of high school years. I took on most of the work. That was fine, as I had a good relationship with my mom.
You are in a similar situation.
My advice is to no longer concern yourself with requesting help from other members of your family. Now is the time to dig in and start doing some research as to how you will take care of your husband, when you can no longer take care of him yourself. Your job is to make sure he will be safe, and that might very well mean that you need to place him in a nursing home at some point.
So, it is research time. See what is available for him. Simply gather the facts and make decisions based on facts ONLY.
If his cognitive state is degrading, I highly recommend that you get with a doctor (MD, DO, etc.) who is a ReCODE practitioner. ReCODE was developed by Dr. Dale E. Bredesen and is a protocol for the prevention and cure of Alzheimer’s. The success rate for those with early onset Alzheimer’s and mild Alzheimer’s is about 100%. Those in later stages can gain relief, too. I have been on the protocol for a little over seven (7) years. Do an Internet search on Dr. Bredesen and go from there.
By searching out nursing homes and/or in-home care, you would not only be learning about things to help your husband, you would be helping your future self. I am 75, in good health, but I have already filled out paperwork for a nursing home and am now on their waiting list. As I explained to them, my mom went into the nursing home at 85, so my thoughts are that I will go in at that age. It is all a matter of having a plan in place. In the end, I might not live to 85 or I might never need a nursing home, but, I have a plan in place, which is extra important, as I have no wife and no children. It is all up to me.
Count upon yourself and simply research and make plans. As for the others, I would merely keep in touch, but you have much work to do, so keep it friendly with them but take on your tasks.
I wish you all the best.
So, do that. If you want someone to come and elder-sit your husband for a few hours a week so you can get a break, ask for it. If you need help with his personal care and with the domestic chores of the home at your age, ask your family to help you find the appropriate kind of help you need, but you pay for it. If your husband needs to go into memory care or AL, ask your family to help with doing that. If you would just like them to visit with no expectations because living with a person you're a caregiver to especially when they have dementia, can be very isolating.
Don't expect them to listen to you complain or vent, which for the most part are pretty much the same thing. That's what support groups are for.
So yes, you should send your family that email and tell them plainly what you need and want.
See All Answers