Caregiver wish list: Things we would love to hear from others

Funny I should read this now, it's 10:00 a.m. and I'm exhausted from hubby wanting coffee/food at 3:00 a.m. Night and day have no meaning to him now. He doesn't understand why I need so much sleep or I'm always tired. Can't remember the last time I got a full night's sleep.

He doesn't want anyone else here and when I do hire a caregiver he sees them as a housekeeper and still calls me when he needs something. Leaving the house doesn't work, he gets very scared and nervous and becomes angry at me when I return.

How do others deal with this?

@minniem. Welcome to Mayo Clinic Connect! Are you a caregiver? Your comment about coming over so someone can do whatever they want makes me think that you are. How is it going for you?

I would like to hear from one of my kids- “we see what you have to do for Dad, when you need help, I’m here for you”.
Just finished an exhausting week- 7 MD and testing appointments- getting him in and out of the car, into and out of the buildings, on and off the examining tables, answering the questions, scheduling the next appointments, keeping him calm. Plus I have a terrible cold- wearing a mask, doped up with OTC cold meds, can’t cancel anything- the wait is months for the next appointment.
Thanks for letting me rant. Do you ever think “What about me? Who will do this for me?” I tend to repeat to myself, “Thy will be done, not mine.”

Yes, yes all of it. This is 24/7 thought and deed.
I could feel your frustration. I know my kids care and appreciate all I do but they have their own lives and still would like things to be as they were before. I’ve had to set boundaries, lower my expectations and move on. And I lose it because I’m exhausted. Yesterday I was snapping at him and he said “ Do any of your friends talk that way to their husbands?” And I said ( and I know I shouldn’t have) “None of my friends have a husband with dementia.”
I felt bad that I said that but it’s true.
In the last couple months I had an emergency appendectomy, my husband had pneumonia and we both had COVID. Through all of it all I can think about is S.
Who is there to take care of you! And with a cold you are just plugging through.
I love him and we still work on this together to enjoy life but it is hard. And he does appreciate me but also feels I’m picking on him or always telling him what to do. He needs 24/7 guidance. It’s hard. And he needs a hug and appreciation for what he can do and tries to do.
Do you have any help? Friends? Family? Hired help?
We do have friends who will pick S up and take him out but not to doctors and hospitals for tests.
Who are you without your husband? Do you have anything you do just for you?
Hugs to you and give yourself a hug.
I hope you are able to get some rest in between all you have to do.

I have a friend that once a month provides a meal or a dessert. She sends clippings from magazines and newspapers regarding care giving. Sometimes she throws in the comics section. This is a lovely way to help.

Amen

How bout things we don't want to hear from family.
"Every day is a day off for you."
"It was your decision, so stop bothering me."
Or how no family member asks how you're doing and really wants to know. Their eyes glaze over when you start answering the question.
" 'that person' is your cross to bear"
The list is endless. I've heard most of them in my 12 years of 24/7 365 caregiving for one family member.
All of those remarks came from family members. It's not a helpful world out there for everyone. Some people get help and some are denied. Anyone else out there struggling with no help and no support?

I had a complete breakdown in front of cousins and my daughter. So bad she thought she would need to take me to the hospital. She saw and my kids are concerned and realizing Mom is breaking down and although they are all busy professionals they will have to pay attention.
Can’t wear the mask anymore.
My body and mind are breaking down.
I am looking for someone to be here two days a week so I can have peace of mind the. I’m gone for the day and would love to get away by myself a few days.
A zen retreat would be nice;)
So those things you have heard from family- tell them how that feels. Cry in front of them. A nervous breakdown can be a nervous breakthrough.
That’s how it felt with my daughter and words were ugly before we hugged each other and cried.
Can’t keep it a.secret and can’t pretend this is not horrible.
Bless you. All those comments had to hurt.

I'm so sorry it had to come to this for family to realize how bad things have become.

My sister lives too far away to provide hands on help but provided some suggestions for activities i can buy that hubby might enjoy. But instead of leaving me with one more thing to do, she ordered it and is having it delivered to me today. Much better than those who simply tell me what I should do. I am so grateful for her!

Sometimes you feel like you are on a deserted island and need to be rescued. I spoke to my daughter about coming by to seat with her Dad for a couple of hours. I am still waiting.