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Longtime caregiver looking for support and coping tips
Caregivers | Last Active: Oct 1 7:57pm | Replies (113)Comment receiving replies
To see the feelings and challenges of the caregiver role in written word is like a lifeboat to me. I am a "fairly new" caregiver for my husband who had a bone marrow transplant in July 2022. We are home now after our 100 days of living nearby the hospital. While his physical prognosis seems to be ok at this time, his mental capacity has markedly declined. I have mentioned this to the providers who will schedule a brain scan and possible neurology appt in the near future. We also run a small business together and have had to "oversee" each interaction he has with customers to assure that we can serve them properly. He becomes confused easily and frustrated with not being able to find words or maintain a consistent thought pattern. I feel alone as I can't expect him to help me climb this mountain of daily responsibilities. It is overwhelming. I do try to take time for myself but have to carefully schedule that in when I know I can leave for short periods of time. Like you, I do not confide this to friends because I don't want to complain and feel like I'm failing. I also don't want to hear about having to take care of myself. I know that! I'm trying.
It takes a lot of energy to kindly circumvent his trips to the store (spending money on things we don't need). We are still trying to find where in town he has lost his set of house, etc keys. I have to constantly remind him to wear a mask in public and when customers come in our store or when we are out in public (crucial for a bone marrow transplant patient) and to take his meds, even though I've organized them in a pill caddy daily, the same way, every day. I am exhausted and empty. I do ascribe to, "one day at a time", which is the best I can do.
Thank you for listening.
Replies to "To see the feelings and challenges of the caregiver role in written word is like a..."
Wow, I can't offer anything other than to to say how bad I feel for you. It is truly more than you can carry...God Bless you for trying.
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Hello, @lag630 You raise such important feelings in your post! I was my wife's caregiver for over fourteen years and experienced so much of what you are struggling with now. I know everyone's journey as a caregiver is unique but I'd like to offer my thoughts to try and help a bit if I can.
First, it is not 'complaining' or 'failing' when you reach out to find someone to talk to about the demands of caregiving, even though many folks will see it that way. I had to grow extra-thick skin on this issue. I had a close family member who maintained each time I honestly answered him when he asked 'how are you doing?' I was 'just looking for sympathy'. Grr! That said, I did find two friends of old who understood my need to vent periodically about the demands.
I also understand your feelings of being overwhelmed. Days are not built for caregivers to get everything done in that they need to do. So many things had to fall by the wayside in my life as caregiving took precedence. No one can do all that we find on our plates as caregivers. Perfection was just not an option as I came to love living with a constant pile of laundry to do, never looked at an iron, felt comfortable with dirty dishes in our sink, and dust bunnies became our new pets! As I like to say 'Wonder Woman and Superman are found only in the comics and no caregiver can be a superhero.' We can only try our best and look for what help we can find and afford.
My wife had compulsions too. She was constantly thinking we needed and buying tin foil, paper towels, and coffee. For me, I had to choose my battles on things like this or we'd have been fighting all the time. I am still using up leftover tin foil to this day! Hard, hard, hard to control!
I can only add one of my favorite sayings as a caregiver "Courage does not always roar. Often times it is the quiet voice at the end of the day that can only manage to whisper "I will try again tomorrow."
If I may ask, are the mental challenges new?
I hope the sun is shining on you today!
Strength, Courage, & Peace