Caring for your caregiver when you have Neuropathy

Posted by Debbie @dbeshears1, Mar 4, 2022

Hi –
As I’m approaching my silver wedding anniversary next week with my husband, I reflect back on 20 wonderful, adventurous, activity-filled years!!! And 5 sad years when we were blindsided by my sudden onset of idiopathic neuropathy disability. I am grateful now that only 6 months were confined to wheelchair, I can now transport myself with walker, even drive some, though like most of you, limited feeling in hands, feet, accompanied by weakness and pain, and of course it’s depressing to have life as you knew it take such a drastic turn.
My question for this group: knowing that our partners’ lives changed as well, how do we help them cope too? Not all caregivers are created equally, and this is frustrating for them too. They’ve lost their social and athletic partners too. So many friends no longer include you because you are unable to keep up, or a burden. Heck, I am, because so many don’t have toilets I can use! The pandemic didn’t help socially either.
So, I don’t want to be selfish with thinking I’m the only one needing to cope & live life to my fullest – any ideas on helping our spouses and partners along? We are returning to our honeymoon spot for several days. I will sit with him at the pool (in the shade, not heat please!!!!), and thank God for taxis, though there’s a lot within 2 blocks I can get to with walker. It won’t be the same, but I sure am going to try hard to make it good for him. Any suggestions or groups though to help folks like him cope? Thanks!

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

@dbeshears1 what a thoughtful post on the heels of your wedding anniversary with your husband. The mere fact that you are considering how something like you having neuropathy has affected him as your caregiver and partner, is a testament to your consideration and love for him. So often in life, I feel like people tend to mourn who they once were and begin comparing life to that. I am guessing returning to your honeymoon location where your marriage kicked off leaves you reminiscing at all the amazing memories you two made when you were there last, but the truth is we all change and adapt how we live to who we are as we age.

May I be so bold as to ask if your husband has ever made you to feel like a burden or if this is a feeling you maybe place on yourself? Have you ever asked him his thoughts on this topic directly?

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Thanks for responding Amanda. I think it's fair to say I place the feeling on myself; he has never outright "complained", though we do talk in our occasional pity parties (or reminiscing) we have with each other. To put it more in perspective, he is 18 years older than I am. so when I as stricken 5 years ago, it was hard being for me being disabled at 52 while with him at 70, it's hard to see him stopped at this critical stage in his life. And, now that he's almost 76, the normal aging process has it such where it would be ideal if I could help him more! I do most of the driving now, but otherwise he is very fit. But physically I am pretty much self-sufficient, and pull my weight around the house, I do the "traditional" women's chores, and most of the shopping and cooking, and he does the "traditional" male tasks. But outside the house, I am limited. We can't run races and bike like we used to, walk beaches, swim, run, water ski and hike etc… He is in much better shape and health than most men his age, so he doesn't really have any guys his age to play with. I was his athletic partner and we kept each other fit! He still has his gym workouts, but I hate not being able to go fishing, exploring, and run a 10K together. But there are things we still both do and enjoy… some travel, dining, watching sports, sunbathing, and pool exercises. So he has been a terrific sport considering this idiopathic neuropathy (and unfortunately a couple other "co-morbidities" I have been recently fighting, all unexplained as well). He shares my disappointment with not understanding why medical folks can't figure me out (then fix me!). So yes, we talk, and I am so blessed to have him, and he is a great coach and cheerleader. I just wish there was a network or local support group here for families of affected, that he could use if he was interested. I found this group by accident (no doctors ever suggested such a thing). I have learned SO much and feel better knowing I am NOT the only person going through this, I just never met anyone in person in my 5 years. I just wonder if there are groups for folks like him that can feel invigorated by knowing they're not alone either! But if nobody here knows of anything, I'll keep searching the net. Or ask my Neurologist. HAHAHAHAHAHAHA 🙂

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I am in remission. I have SCLC and now CIPN. My husband is my caring angel. He held me as I vomited all day & night. Took me to my chemo & radiation. Made me copious amount of black cherry Jello (only thing I could swallow). He does almost all the laundry & cooks when I am in too much pain or too weak. We do bicker because he worries so much and I tell him I am able to do certain things. I haven't driven but I am going to start again this week. He truly is my angel and he makes me laugh all the time. We have been married 35 years and lived together a total of 47. Big love to all the caregivers.

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@oceanlady22

I am in remission. I have SCLC and now CIPN. My husband is my caring angel. He held me as I vomited all day & night. Took me to my chemo & radiation. Made me copious amount of black cherry Jello (only thing I could swallow). He does almost all the laundry & cooks when I am in too much pain or too weak. We do bicker because he worries so much and I tell him I am able to do certain things. I haven't driven but I am going to start again this week. He truly is my angel and he makes me laugh all the time. We have been married 35 years and lived together a total of 47. Big love to all the caregivers.

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Amen to that @oceanlady22! In the past few years I have had compassionate eye-opening appreciation for our nurses, CNA’s, other medical support, physical therapists, and of course our home caregivers/family. Of course doctors too, but I would have never have guessed that I would ever have needed the help and services of these hands on people! It takes special people to choose these careers – it’s a little harder for those who stumbled across their roles by chance. It sounds like we have both been given challenges in the medical arena, but have been blessed with being provided good life partners! Praying that your remission is permanent!

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@oceanlady22

I am in remission. I have SCLC and now CIPN. My husband is my caring angel. He held me as I vomited all day & night. Took me to my chemo & radiation. Made me copious amount of black cherry Jello (only thing I could swallow). He does almost all the laundry & cooks when I am in too much pain or too weak. We do bicker because he worries so much and I tell him I am able to do certain things. I haven't driven but I am going to start again this week. He truly is my angel and he makes me laugh all the time. We have been married 35 years and lived together a total of 47. Big love to all the caregivers.

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Hi @oceanlady22, you may be interested in also following the Lung Cancer group here: https://connect.mayoclinic.org/group/lung-cancer/

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Having the same problem. I am unable to get around like i used to. Cant walk fast with my honey. He has to walk at a normal pace and that leaves me in the dust at times. I just cant do it with him anymore. Even on decent days I’m plodding along with cane because walker makes back spasm worse.

To address your situation, I’m not sure i have answers to that. But we are in similar situations. I feel left behind. I physically cant keep up, but push thru and try my best. I’m sad and dont have a positive outlook of life due to all my physical problems.

He developed dystopia of voice. So his voice cuts out and i can hardly understand him. So between both our problems we rely on communication. And that is somewhat stalled.

We have to help each other. Work as a team. Let him know you love him. Gentle hugs.
Take care and wellness to you.

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