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My dad passed last year and mom went into nursing home for 3 months and then lived with my brother for about 7 months and then they got evicted so I moved mom into a nice rv on our property so I can care for her daily....I work and it’s been difficult but I can’t put her back into that nursing home and it would be easier if she would accept that she has to use wheelchair and everything is difficult now for her but she doesn’t have pain like most do with neuropathy and I tell her daily she should feel blessed for that! I just can’t handle all the negativity and she gives up and wants me to do “everything” for her and I have explains to her that she doesn’t use it she loses it...I want her to at least try...I guess I need to vent but if there’s anyone that has gone through this and know what I can do to be of better support for her...I appreciate any advice

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I have severe neuropathy. I get a slight break from the pain early in the morning. From 2:00 on until I finally get to sleep it is almost unbearable. I have frequent falls. I walk about 2 miles everyday whether I feel like it or not. I would love to complain nonstop to anyone who would listen. But I’m smart enough to know that no one wants to hear a complainer, so I keep it to myself for the most part. I have tried many medications over the last 5 years but none are very effective and many have unpleasant side effects. So I take nothing. I’ve never taken an opioid. I’ve found that staying busy helps a lot. I still work and don’t plan on full retirement for 5 years or so. I’m on kidney dialysis which isn’t a picnic. I have it early in the morning when neuropathy isn’t so bad. I take vitamin B12 which was recommended by physician. I follow the kidney diet and try to stay very low fat. That seems to help some. I go for weekly reflexology treatments. My luxury is weekly pedicures. Both reflexology and pedicures help with the pain.

Complaining gets no one anywhere. Neuropathy is forever, but being negative won’t help.
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I guess I'm not sure how a wheelchair bound person can function in an RV......? And how she can be cared for while you are at work....? And why the Nursing Home option is no longer an option, when she will get 24/7 care there, not to mention socialization and regular PT and OT on site, if she wants it.

My mother finally went into a wheelchair due to neuropathy, about 2 years too late, after taking 36 falls and going back & forth to the ER and to the ENT doctor for the chronic vertigo she suffered as a result of not knowing where she was in space. Now that she's in the wheelchair, the vertigo is gone, but not the chronic leg/foot pain she suffers with the neuropathy (Yes your mother is lucky in that regard) so all I hear is chronic complaining. She lives in Memory Care b/c she also suffers from dementia and about 10 other chronic health issues including CHF and AFIB. She'll be 93 at the end of this month.

She fights PT and OT tooth and nail, then begs to get signed up for it again once it ends. It's back on now, and she's been complaining daily. They come too early or they come too late. She's either too tired, too full from eating, or feeling too much pain to actually DO any of the PT and OT that needs to be done in order for her muscles not to atrophy. She complains that the PT and OT makes the pain worse, then when it ends, she complains the pain is worse because there is no PT & OT.

See where I'm going with this? Nowhere. There is no cure for old age. There is no cure for chronic complaining. But there IS help for YOU by getting her placed in a different SNF that meets your approval. If you'd like some respite from all of this. If not, then try getting her some PT & OT at home. Please read above for what you might expect from it. Sigh.

Oh, I also wanted to mention my mother does take Gabapentin for the nerve pain; I have no idea why it'd be prescribed for your mother if she has no pain from the neuropathy. It does have strong antianxiety effects, and has been proven effective in the treatment of panic disorder and social phobia. I just looked that up, actually, thanks to Katie's comment; I had no idea Gabapentin had ANY other uses. Too much is no good, however, as it can cause adverse side effects. Mother also takes Wellbutrin for chronic depression, but unfortunately, it doesn't help with complaining. Nothing helps in that department, as far as I know. :(

Wishing you all the luck in the world dealing with this difficult situation.
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c4caring Jan 2020
Wow You have a lot going on with your mom also, sounds like! Yeh rv is handicap accessible and she is able to maneuver just fine in fact when she lived in a house she fell at least once a week and she has not fallen in the 6 months she’s lived here. I really needed that vent time and know I’m not alone. Thanks for your comment!
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My thought is, is the RV handicap accessible. The counters low enough for her to work at. Food, dishes, etc where she can get to. Is the bathroom easy for her to get in and out of? Are there safety bars in the shower? A shower chair and handheld shower head? Is her bed easy to get in and out of? I had a small bar on Moms where she could pull herself up and use to help her stand.

I would suggest u call her doctor and ask for PT and OT homecare. A therapist will come in and evaluate Mom and where she is. They will offer suggestions. Mom will get therapy teaching her how to get her ADLs done.
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c4caring Jan 2020
Yes her rv is accessible and tried the therapy thing...they act as if she doesn’t need much help! She also doesn’t show them her side of when she’s with me...she tried harder with them but then doesn’t want them just wants me to help her. It’s just something I’ve got to live with but I needed to vent and I feel better for the moment. Thank you for support!
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Ask her doctor to order her PT in her home. Order her MOW. See if you can get her on a visitation schedule from a nearby church. See if your Area Agency on Aging has suggestions for you and her. Ask them about a day care that might have transportation or that would fit your schedule to take her back and forth. Since she is considered homebound, she might qualify for home health to check on her, set up her meds, check her vitals provide a bathing aide. All of these things would provide stimulus in her life and give her an opportunity to interact with others.
Make a list of things she needs to do each day and resist doing them yourself.
Try a different NH. Visit all in your area and even out of your area. They aren’t all the same. I know you are doing the best you can. Do try to sit and visit with her. She must be very lonely. Breath. Start a meditation with her. Just a few minutes will help you both and will improve her mood. Ask her to greet you pleasantly and give you a hug. Start there. Before you go in to see her, take a breath and shake off the worries and concerns of the day. Realize that your energy affects her just like her energy affects you. Let us know how it’s going.
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c4caring Jan 2020
Thank you!!! Very good suggestions...I appreciate the support and helpful ideas!
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Have you tried asking her doctor for a mood stabilizer?

I bring this up because the fellow I cared for after his stroke was very negative and down. He was put on gabapentin both for the neuropathy and it is a mood stabilizer. He was much more willing to help himself and to try being as active as possible to preserve what function he did still have.

maybe this will work for her too?
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I guess I must ask why you cannot put her into a nursing home, I am sure that there are others that could be taken into consideration.

We just placed my mother in AL, she really likes it, is surrounded by people her own age, has activities and more. She is no longer sitting by herself 24/7, IMO this is not healthy for a elderly person. She has too much time to think and feel sorry for herself, and you are her sounding board.

I would suggest that you rethink your options...good luck.
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