Caring for your caregiver when you have Neuropathy

@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?

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 🙂

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.

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!

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

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.

@nemo1, as we age and our abilities change, so too must our habits. Hearing is changing for both my mom and I. Her house is a split level, which always made calling from one room to another or even from one level to another easy to be heard. Not any more. We're working hard to remember to go to the room where the person is, turn off unnecessary background noise (radio, music) if we're cooking together or doing something where we're not face to face. Old habits die hard however, so we have to laugh at ourselves when we can. Frustration still creeps in sometimes.

What strategies have you and your partner found to adjust to the new challenges in communication?

We look at each other when he speaks so I can in some cases read his lips a little and watch the word he try’s to say. It helps. Mask wearing makes it difficult. I’m preparing for the time he will have to write out his responses on a white board. We do things together. I really don’t think we are very prepared for when and if he loses it. I try to have him relax after work. He walks 5 miles a day. It helps him. It takes a lot of patience. Physical Therapy. Sometimes there is frustration, that turns to a sadness. I try to turn it around. But there is grieving of a sort for this kind of loss. I’m still learning. My therapist helps. I practice square breathing to help relax and it sort of gives me a time out. Lol We still have to work at finding strategies that work. Thanks for your post. I appreciate it. Have a great night.

My husband is very hard of hearing, has hearing aids but still has much difficulty and gets frustrated. We’ve developed a limited sign language, done with pointing, finger motions, facial expressions, lots of smiles and the “I love you” sign. For talking, I have the house phone speaker function turned on and I call him from my cell phone. Feels silly to be in the Lazy-Boy and he’s 6 feet away at the computer desk, but it really works for verbal communication. Maybe amplification on both sides would help with the dystonia.

Maybe I missed something, what amplification are you speaking of?