Longtime caregiver looking for support and coping tips

Thanks Becky. I'll try what you suggested. I never know how he will respond to anything until we try. He's very hard to predict. What wad fine yesterday may not be tomorrow, and vice versa. Just taking it one day at a time.

Stick with the caregiver. I have orchestrated caregivers for my 90s aunt and uncle with dementia over the last year. They didn’t want to do it in the beginning, but as we kept after it they started to accept it. Some caregivers are better than others and when they hit is off, it becomes much easier. I also had to remind them that we had discussed and planned this together to bring in needed help. It will get easier especially if he is cognizant enough to see the chores he is doing to help you. And keep emphasizing it is to help you, not him. I bet he will come around with time. Dementia is such a burden. You are doing what you need to for your own health. Be strong and delegate to family and friends where you can.

In the realm of bibliotherapy, there is a new book out titled "Burnout Immunity: How Emotional Intelligence Can Help You Build Resilience and Heal Your Relationship with Work" by Kandi Wiens that may be of help to you if you can view your caregiving as a work situation that is stressful; involves toxic personalities (energy vampires, for example); requires extended time and attention; seems to have no relief in sight; and so forth. Although I am now retired, the book pinpointed many of the issues I experienced in a dysfunctional "organization" years ago - but what struck me most profoundly was that the signs and symptoms of burnout in the workplace match what is going on now as a caregiver for my spouse with Parkinson's Disease.

@kellysuebarker Welcome to Mayo Clinic Connect! We’re certainly glad that you found us! But you sound so sad and frustrated.. What can we do to help you?

Having worked in the field and personally served family and have chronic illnesses myself, I understand a lot of your issues around this.
Here's a quick thought for you. The inital anger will wear off as the routine develops. You have to weigh the benefit for both of you against his anger at a lack of control over things. Typically there is going to be some agitation over something and it might as well be something helpful for you. And him.
Suggestions... have the agency text or email a picture to you so you can show him " your helper" thats coming . Great if you can print it out. Visuals tends to remain in some
individuals minds better then words. Then show it to him as the individual arrives so he can verify its right.
Have shorter times initally , so an hour daily , instead of 4 hrs 2xs a week . Daily habits are easier to become routine.
Emphasize the helper is your helper ..not for him. Until he's a little more accommodating. Then you can shift to longer times and spread out. Usually a week is all it takes.
Have them identified by a specific task and timeframe if possible .
"My friend, Sara, is coming at 11 today to make us lunch ."
" it's 11am, where is Sara? Oh there she is! Hurray! " or " today is bath day. John coming to help with that! I can't do it becsuse he's stronger he can help you"
Something like that
Setting a timer to audibly go off at the time they are arriving can help you set the tone . " oh look , it's time for her to be here now"!
This removes some of the concerns he may develop.
Sometimes just having them stop by to " visit" and see how they can help and leave after 30 mins , with a conversation in front of him " ill be back tomorrow " etc can also ease him into it.
Having him busy with an activity he likes, can also help.
Human nature also, for his age group, may be for him to accept a female helper easier rather then a male. His natural instincts may cause him to shift to protection , albeit confused one, with a unknown male in the home.
Your reaction to his anger, agitation can also feed it or ease it.
If you have apprehensions on how hes going to react, or even guilt for asking for help, fear of how this will work out etc...those emotions translate to him.
You need to have confidence in your decion that this is the best for all of you.
Also, Sometimes a firmer tone on your part or silence to his frustration, works better then tender appeasement.
Remember his mind is not necessarily in his control. Frustration, fear, anxiety can all represent as anger.
Remembering that his emotion will pass. But your need for help will not.
You deserve support in the amazing job you are doing of caring for him. You matter to.
Did the agency have tips for you as well?

Bibliotherapy / books are a great help. As humans, we face many of the same issues
& can learn a lot from one another. A friend read the book "Crazy Love" while going
through a divorce & said it made a big difference in her daily life.
Just reaching out to this website is a step in the right direction.
Kayr

Thanks for your thoughts. We're going to have a female "helper" here tomorrow. We have always framed it as my helper since he has been encouraging me to get some help around the home. Afternoon may be better so we'll try that. The agencies here all seem to require 4 hours minimum so that's what we're stuck with. I may use some of that time to have them run errands for me until he's comfortable having them stay while I go out for a bit.

I'll let you all know how it goes. Thanks for all the support.

So kind of you to reply. Just like most people on this site I imagine. We run out of juice sometimes and there are so many demands. Feels guilty tho if you need time for yourself or feels selfish. I really love being a caregiver and patience usually comes easy for me, but course we all need to vent sometimes and support each other. We are all in the same boat, it seems.

Because of my husband 's mens he goes to bed at 7:00pm then wakes up about midnight. He cleans ,watches tv, and plays games. Then in then morning he sleeps at 10:00am. That's my life. It's almost like being single again. I have no idea what to do. It wasn't this bad twenty years ago after his heart transplanst.

Does he get cranky when you try to talk to him while he is playing games? I don't know, but maybe finding the best time during his waking hours to talk and plan ahead every day would help.