Longtime caregiver looking for support and coping tips

Posted by tim1028 @tim1028, Mar 20, 2022

I've been a member of Mayo Clinic Connect for several years, but this is my first time at this group. Here's my situation: I have been a caregiver for my parents, 4 years for both and 7 years for my mom alone ( she died in December). I also have been a caregiver for my wife for the past two years because of incapacitating Chronic Fatigue Syndrome mixed in with Long Covid symptoms. It has been helpful to see a therapist weekly, but I feel emotionally exhausted and feel like I have little in reserve to give. I work hard to take care of myself as well, but this is easier said than done. My reason for posting here is for support and encouragement from others in the same situation. And,too, perhaps to pick up some useful tools to cope with the difficulties of caregiving.

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@becsbuddy

@jehjeh How totally dispiriting for you! There are 2 things that come to mind that you could try. #1 is to have another conversation about having some help because you can’t do it all and if you get sick, who will help him? #2 hire the young man for another shift and have him help you, but be sure your husband sees him and how helpful he is. You may have to talk with the young man before hand, so he understands and will cooperate.
How do you think your husband will react?
Just some thoughts

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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.

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@kellysuebarker

It's just so heartbreaking and exhausting.... 😭. Sometimes rewarding but almost of the time I feel so broken like I can't do anything right. My faith and prayers sustain me...

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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.

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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.

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@kellysuebarker

It's just so heartbreaking and exhausting.... 😭. Sometimes rewarding but almost of the time I feel so broken like I can't do anything right. My faith and prayers sustain me...

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@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?

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@jehjeh

After months of convincing myself that I needed help caring for my husband with dementia, I finally contacted an agency. Yesterday was our first visit. The caregiver was a very kind and understandings young man. However, my husband couldn't remember us talking about him coming to help me around the house and to be here just in case I needed to leave for a bit. That's how we framed it.

He lasted 45 minutes.

My husband was so angry with me for not telling him (Though we've talked about it daily, even that whole morning) that I had to ask him to leave. He did sweep, dust and fold towels so it wasn't a complete loss. But I still have to pay for 4 hours of his time.

I'm so discouraged and tired today that I'm hesitant to move forward with another caregiver later this week. Maybe afternoon will be better than morning. I'll try again but just needed to vent. I hate to keep burdening my friends with my frustration. Hope you all don't mind my rants. Maybe I'll have good news to report soon. Fingers crossed.

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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?

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