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Caring for your caregiver when you have Neuropathy
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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!
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Thinking if the wife uses their landline on "speaker phone" , it might amplify husband's voice while he uses the cell phone enough that she can understand him, where he has dystonia.
Another idea- ask PCP for a referral to a Speech Pathologist, they have alot of knowledge about communication aids, maybe also breathing exercises for him to cope with the dystonia.
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4 ReactionsThose are great ideas!
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1 ReactionSo, when @dbeshears1 first posted this topic in 2022, I thought she brought up a heck of a good point. And, as we continue to live through the journey of peripheral neuropathy, it is important to say thanks to those who help us along the way. My wife and I have been married for 51 years and both in our early 70's. She knows what I go through and has been a tremendous support to me. She too has health issues but what she has is treatable. We have both learned that PN isn't going away. She inspires me to do things and gives me that "nudge" when needed. She helps me and I help her as well, we both give 51% to the other person. Debbie is right, we need to make sure we take care of the person who helps take care of us.
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6 ReactionsIt would be so nice if cell phones could act like pagers, so if out of hearing range you can talk and hear it better instead of having to walk to each other to talk (you’d have to be able to turn if off when in church, appts etc). A neighbor just told me they use Alexa somehow to help them communicate. I’m looking into seeing if I can find some type of inexpensive paging type system in our home to help us since he has hearing issue and me mobility.
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2 ReactionsMy daughter has an Alexa unit in her kitchen and one upstairs in her teenager’s bedroom- it’s great- you say, “Alexa- tell (name) it’s time to get up”, and “she” does- you can set the volume. They have it programmed for “Alexa, turn on (or off) the front door light”, the living room light, etc. if you buy it from Best Buy, you can pay for a Geek Squad person to come out, set everything up, register the warranty, and show you how to use it. I just did that with a printer- worth every cent!!! No hassle, no frustration with the online instructions (seems nothing tech has paper instructions anymore), no frustration with phone support people), etc.
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