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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.

Interested in more discussions like this? Go to the Caregivers Support Group.

Mentor
Scott, Volunteer Mentor | @IndianaScott | Apr 27, 2022
In reply to @tim1028 "Scott--Thanks for your kind and useful comments. I strongly agree that caregivers want to be listened..." + (show)
@tim1028

Scott--Thanks for your kind and useful comments. I strongly agree that caregivers want to be listened to--attentively not dismissively--and don't expect answers. Often, being listened to is exactly the answer the caregiver most needs.

Holy Mackerel! That picture of the overturning raft in the whitewater illustrates the caregiver's situation exactly.

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Thanks, @tim1028 That photo is of our raft after smacking into a rock ironically called ‘the pillow’. It was fall, the water icy cold, and we were in rain gear. Luckily, someone from shore tossed a line I was able to grab and make it to a rock. It was also my last ever rafting trip!

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LisaL | @l32 | May 2, 2022

How crazy is this sentiment: it feels good to know we are all in that same boat aka raft.

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janet7 | @janet7 | May 3, 2022
In reply to @auntieoakley "I have discovered doctor time. Since both of my charges are in cancer treatments and see..." + (show)
@auntieoakley

I have discovered doctor time. Since both of my charges are in cancer treatments and see doctors that I don’t need to attend. Any time, I don’t need to be there for information, I sit in the car and knit or listen to my favorite music on my phone. I have even taken to bringing along a little snack of dried fruit or “mostly” healthy oatmeal cookies. I had forgotten about this precious time. When my husband was having his transplants at Mayo, the nurses would tell me “ he will be here for a few hours, he is in good hands, go do something you enjoy. What a blessing to remember. Does your charge have appointments you don’t need to attend?

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I need to go with my husband for his Cardiologist and Neurologist appointments My “free” time is after he retires for the night, about 9 pm. Then I can relax in my “Happy Place” (in my lounger) with peace and solitude so badly needed. Sometimes I am up way past midnight and still not ready to retire. I love to read!

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Mentor
Chris, Volunteer Mentor | @auntieoakley | May 3, 2022
In reply to @janet7 "I need to go with my husband for his Cardiologist and Neurologist appointments My “free” time..." + (show)
@janet7

I need to go with my husband for his Cardiologist and Neurologist appointments My “free” time is after he retires for the night, about 9 pm. Then I can relax in my “Happy Place” (in my lounger) with peace and solitude so badly needed. Sometimes I am up way past midnight and still not ready to retire. I love to read!

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Currently they are starting to allow visitors back in to oncology too. I will be accompanying both family members to their appts. Again. Maybe I can stay awake late. Thank you for the idea.

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janet7 | @janet7 | May 3, 2022
In reply to @auntieoakley "Currently they are starting to allow visitors back in to oncology too. I will be accompanying..." + (show)
@auntieoakley

Currently they are starting to allow visitors back in to oncology too. I will be accompanying both family members to their appts. Again. Maybe I can stay awake late. Thank you for the idea.

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I enjoy my free time so much that I don’t get tired and when I’m reading, I get taken away from time and what feels like an hour is really two or more and then it’s past midnight. I think when you are doing something you really like, the time does fly by. I hope you find your “sweet place” like I did.

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tim1028 | @tim1028 | May 3, 2022

I find that it is important to accept the reality of one's situation, rather than wishing it away. Only then is it possible to find ways to cope. I have found that small things add up: a little self-care here, a little there can go a lot way to relieving physical and mental stress. I'm always on the look-out for the little breaks that pop up or can be squeezed in. I try, too, to be grateful for the bright spots, moments of joy and a sense of ease that occur. At the end of the day, I think back on these rather than the hard times. The things we are thankful for as caregivers are often quite different from those things non-caregivers may think to be thankful about, if thankfulness even occurs to them.

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yannis | @yannis | May 4, 2022

Caregiving is an act of love to the one you are caring for. It is a difficult job however the love you give it is well worth it. You become enriched when you put yourself into the act of pain that your loved one is going through. See the beauty of Love in Gods Creation of your loved one that you care for.
Think often of that person one day that they may not be there and it will make you a better person.
Laugh everyday smile, good words no matter how difficult your day may be.
Always see The Christ suffering in the Loved One and be embraced by the spirit of Love.
Everyone goes through their own Calvary Golgotha but Love endureth all.
Always be blest to follow the rules of Love given Down to us thought the centuries.
Yiannis
It is now over three months since I lost my love my soulmate, my husband and the grief that one goes through without their smile, their kind acts, and their kind words makes it all the more difficult…but in the end it is our love that continues for all lifetimes.

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Mentor
Scott, Volunteer Mentor | @IndianaScott | May 4, 2022
In reply to @janet7 "I enjoy my free time so much that I don’t get tired and when I’m reading,..." + (show)
@janet7

I enjoy my free time so much that I don’t get tired and when I’m reading, I get taken away from time and what feels like an hour is really two or more and then it’s past midnight. I think when you are doing something you really like, the time does fly by. I hope you find your “sweet place” like I did.

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I agree, @janet7 It is amazing the "places" a good book can take us!
Strength, Courage, & Peace

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deek15redpeppers | @deek15redpeppers | May 4, 2022
In reply to @tim1028 "Reading this thread has been comforting to me in knowing others are in the same boat...." + (show)
@tim1028

Reading this thread has been comforting to me in knowing others are in the same boat. And I have found some useful coping suggestions.

Part of the difficulty in caregiving for me is the changes that occur. Although it's the same in some ways, the varying demands and challenges can result in increased stress: physical, emotional and mental. It's kinda like taking a raft trip on the Colorado river through the Grand Canyon. The water can be smooth and peaceful in one stretch of the river, then change suddenly to turbulence when going thru rapids.

I've thought about the objection to the advice "Remember to take care of yourself" Perhaps a better way to address this would be to ask the person questions about how they are coping, what things they are doing to take care of themselves, rather than hand it out as a dismissive command, no matter how well-intended. Asking the person questions, gives them the opportunity to respond as they wish and personalizes the conversation by showing your genuine interest in their welfare.

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I love it when friends ask what I am doing to take care of myself. And I have learned not to give the pat answer "Fine" when asked how I am. I can say "not good" or "terrible" and I always find a shoulder to cry on.

We're in Arizona, facing our first summer here as my spouse is in Hospice care and wouldn't be able to make the trip back to Minnesota. She is unable to get into the pool until a lift chair is installed, hopefully this month. So I feel guilty going to swim without her, but I have gotten past that and have been asking friends to stay with her so I can swim at night. The water is heavenly!
I am also finding the courage to ask people to stay with her so I can get away for an hour or so every day.

Thanks for listening. Best of luck to every caregiver out there!

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1 reply
Mentor
Scott, Volunteer Mentor | @IndianaScott | May 4, 2022
In reply to @deek15redpeppers "I love it when friends ask what I am doing to take care of myself. And..." + (show)
@deek15redpeppers

I love it when friends ask what I am doing to take care of myself. And I have learned not to give the pat answer "Fine" when asked how I am. I can say "not good" or "terrible" and I always find a shoulder to cry on.

We're in Arizona, facing our first summer here as my spouse is in Hospice care and wouldn't be able to make the trip back to Minnesota. She is unable to get into the pool until a lift chair is installed, hopefully this month. So I feel guilty going to swim without her, but I have gotten past that and have been asking friends to stay with her so I can swim at night. The water is heavenly!
I am also finding the courage to ask people to stay with her so I can get away for an hour or so every day.

Thanks for listening. Best of luck to every caregiver out there!

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Hi, @deek15redpeppers That is awesome that your friends offer a sympathetic ear! What a true joy that support must be. I'd have given a significant body part to have had that during my years of caregiving! Hopefully, folks are starting to better understand the demands caregivers face, day in and day out.

Sitting here in 40-degree temps, the thought of a swim sounds delightful! I hope they get the lift chair installed for your wife.

Continued Strength, Courage, & Peace

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