DH has Peripheral Neuropathy

I had a look at this thread because the OP’s DH.(though, from her posts I’m struggling to understand what is ‘D’ about him) appears to have similar (though infinitely worse) problems to my DH.

I nodded along until I got to the Tai Chi revelation. Sorry, if he can do all that unaided without the OP’s help I think there’s a rabbit away somewhere in this saga.

If this were Mumsnet I think there would be a large number of posts advising LTB…

Madmeg I have just been reading this thread from scratch and at the end of it , my reaction is that you really are doing far too much for him.

I do not mean this critically, but by doing so much, you are enabling him to become the crippled invalid he is. If you did less for him he would have to do more for himself,

It was you mentioning him doing Tai Chi that made me reread everything. I do Tai Chi. You have to stand up and use your body to keep suppleness. If he is doing standing up Tai Chi, then is noway as disabled as he makes out. However, even if he is doing chair based Tai Chi, he has a movement and flexibility in his arms that he is concealing at home.

Why not offer to take him to Tai Chi one week, suggest you might take it up. Go and see what he is doing, if anything.

I think you should stand back for a week or two and leave him to do everything for himself. If he really has a problem, ask Social Services to do an assessment and get carers in. At the rate you are going you are quite likely to cause your own death by pushing yourself too hard.

HelterSkelter, he can barely dress himself and has almost never worn a jumper, jacket, scarf or hat unless it's freezing and I insist (the neuropathy affects that but he's always been the same). No, he can't put them on alone anyway.

Nor does he feel excessive heat in summer, never has. Nor did his dad which is why his dad was carted off to intensive care in Oz during WW2 along with another soldier, both with heatstroke. He was on a bed of ice for ten days. He had no idea he was even hot!. The other chap died.

Madmeg I second everything that V3ra says above. Stop doing things for him. Get help, call an ambulance when he falls and ask for a care assessment to get carers in.

Ignore any complaints he makes.

Madmeg you really can't carry on like this ☹️

If your husband needs help with his personal care, ask social services about some homecare for him.
They will do a financial assessment and the carer(s) will most likely be through an agency.
My Mum had to pay about a third of the cost as allowances were made for Dad living with her, amongst other things.

If he has another fall and can't get himself up, phone an ambulance.
Be prepared to provide him with a pillow and a blanket while he waits, but you really can't be expected to lift him on your own.
If you injure yourself again you could end up in hospital, which wouldn't do either of you any good.

Please look after yourself first xx

Five days on from his fall on Monday, I am still coping with muscular pain after trying to lift him up. Last night (in the night) I couldn't get out of bed for a wee, so had to wet the bed.

I ache all over!

Thanks for listening. Right now I hate him!

To be honest, Madmeg I think you have done all you can. It is clear that no matter what you do your DH does not intend to do anything to help himself as you say 'He 'enjoys' his ill health'

I think your only solution now is to think about ways you can adjust to this. It wil not be easy, but you have done all you can and sometimes the best way forward is to accept defeat and manage your retreat. You have shown how much you can do and how far you will go to help your DH, now apply that energy and inganuity to yourself.

I have a sympathy for you, I have faced similar problems with a DH with a genetic disposition to the medical problems he has, and a disinclination to do some of the things that would help him. I have just accepted that and limit my reactions to those areas that I can be useful, like managing medical emergencies and insisting on driving when we go on long journeys.

I suggested to the consultant that it could be hereditary but he dismissed the idea (his dad was very stooped, lost height and shuffled as does DH). He won't exercise and won't go near the swimming baths. He "enjoys" ill health.

Last night I pointed out that lack of strength in his arms and "core" is becoming a major issue for both of us. He agreed (as he usually does) but I know he will do nothing about it.

I wondered if a private physio would help (the NHS girl is lovely but too kind to him, and their input is limited), but I don't know what kind of physio or qualifications to look for.

You are doing so much for him, but he manages to drive to Tai Chi himself. And then get out of the car and back in after to drive himself home. And some shopping on the way home. Does he take off a jacket to exercise there and put it back on? How does he manage without you? Or is the Tai Chi for disabled and there is a lot of help?

I think you need some outside advice. Put it all in writing to the GP maybe. I think I would step back for a while and see just what he can do for himself even if it takes longer. And concentrate on yourself.
I can understand your frustration.

Sorry not rtft but has the root cause of his neuropathy been ascertained or is it idiopathic or hereditary? Physio and walking are the best things for it, I believe balance classes and water exercise and help too. There are some things that can help if he's in pain.

I have ordered the zip-up stockings, thanks for that.

I gave him a low stool, a solid chair, two walking sticks, a walking frame, tried lifting him with a giant towel, moving his legs around, getting him to sit up (he was lolled against the stair wall), getting him to kneel - he could do none of those things.

He struggles to get in the car so I bought him a revolving seat and a cloth "leg-lift" thing, he hasn't tried them. He can get the first (right leg if a passenger) in by lifting it with his hands but then he doubles his body forwards (hitting his head on the frame) to get his bum on the seat. I then have to pull him sideways before he can get the other leg in (with even greater difficulty). He can still drive once settled, though I am watching him very closely and now do most of the driving myself.

That said, he drove to his Tai Chi class (15 mins each way) at 11 a.m. today and it is now 2.30 and he is not back. I know he has gone to the Supermarket (en-route) for a few bits and pieces, but 3.5 hours? Oh, he has just pulled up outside - no thought of ringing me to say he was delayed!

I am so upset/furious. I am on a roll now (sorry), but last year when I was having radiotherapy I made 54 ready meals (from scratch) to keep us going while ill (it was oral cancer, so I couldn't eat any of them!) and the best he did for me was bought-in custard, ice cream and rice pudding! And his mobility was not really a major issue as it is now!

These events are so upsetting. You havent said you have children and if yes are they living nearby to help in this sort of situation.

I have been in similar situations and DH is much lighter but it is still often impossible to assist. The advice following a fall is to enable the person to help themselves to get up by putting a low stool or chair etc in reach for them to gradually pull themselves up when they are ready. Of course as long as they are not seriously injured So even though it took some time you did the right thing by leaving him to get on with it. Which somehow he did.
And you were able to get over your A Fib.

Can you pay for some care for him to help him dress. Which will give you a break. Soneone else may not be so patient and make him do a bit more for himself. Or may have good suggestions for types of clothes, fastenings.

I appreciate the whole situation is very difficult. But its your life as well. And you didn't sign up for quite this amount of care for someone who won't take care of himself.

I am trying to make myself stop and think about all sorts of things and ask myself can DH do this himself or am I bustling in too quickly.

Thank you all. I am not at all good at "letting him get on with it". I can see ways of him improving himself (or at least giving it a try) but he isn't interested. He SAYS he is but there is always a reason why "not today".

Yesterday (abt 4 p.m.) he fell. He was going upstairs. He fell on the first stair cos (we think) he missed the step, despite holding on to the handrail. I rushed to help but he was on the floor. He is "only" 11 stones but I could not lift him (he was like a dead weight). Nor could he turn himself, or move his legs to a suitable position. I tried to get him to shuffle on his bottom but he can't do that either. I tried to get him to use his arms to get his bottom on the first step but he has no strength in his arms at all.

After 90 mins of me struggling (physically and mentally) to help, I rang 111. After all the questions (nothing apparently broken) they decided to send an ambulance. It would be at least 5 hours!!!

After about an hour I had an A-Fib episode - brought on, I guess, by the stress. I left him on the floor and went to sit calmly to see if it would ease (BP was sky high). After another 90 mins it did ease quite a bit, but just as I was going to see how he was he appeared at the door - upright. I checked him over and he seemed okay, so we cancelled the ambulance.

He couldn't tell me how he had managed to get up.

We went to bed early and my A-fib symptoms continued for half the night. I woke this morning feeling okay, This A-fib is new to me so I don't know at what point I dial 999 for myself, but I couldn't have left him on the floor.

We seem okay this morning apart from a slight swelling in his wrist, so will monitor it.

I have tried to impress on him the need to improve his strength to avoid this happening again but I don't hold out much hope.

I have ordered two pairs of the compression socks, thank you V3ra.

Macadia

M0nica

It is interesting how little insight many men have or want into their lives, either physically or psychologically.

Can you elaborate? I am interested in your observation.

Well, it is well known that men are far less likely to go to the doctor than women and as a result the outcomes are worse because they seek help later www.nuffieldhealth.com/article/5-reasons-men-avoid-going-to-the-doctor

Any perusal of GN shows members talking about DHs and partners being unwilling to talk problems through, go for counselling. The high suicide rate among men compared with women arises from their unwillingness to talk about their problems. Current publicity campaigns about mental health are aimed at getting men willing to talk about problems, with each other and their families. www.bupa.co.uk/newsroom/ourviews/mens-health-mental-health

None of us wants to be in this position but I have to sayI've gained some comfort from this thread just knowing I'm not the only one. Our relationship is good and I know how he hates what he's become. I know I couldn't detach. Wish he had more mobility rather than a shuffle so we could walk together, go on holiday and just enjoy retirement before it's too late and I wasn't a carer.

He cannot get socks on (and he wears compression stockings too for very swollen legs), but cannot use the various aids he has been given to help with that for all sorts of reasons.

amzn.eu/d/hJKCdQn

Madmeg I've bought zip-up compression socks for Dad on the recommendation of one of the carers where he lives.
They're a game-changer!

Madmeg I can sympathise. My life is similar but not quite as bad as yours sound.

DH is 81 and I am in remission from cancer and have several other problems.

It is difficult to consider leaving a partner to their own devices, but it is also difficult seeing your own life disappearing. Can your GP refer you for some counselling sessions to try and make sense of all this.

DH is currently being assessed for attendance allowance, but he doesnt think he needs it. But he does. He cannot see or understand that his day to day difficulties are affecting me badly. He is and always has been a very selfish man.
I can only send you my sympathies. Try and get some help or advice for yourself from your GP if you havent done so already. Tell them what you have told us. At the least it is then on record that you are doing your best, but it is getting too much.

I expect you feel like walking away and shutting the door on it all. Thats how I feel quite
often now. Try and put yourself first now...I am trying to do the same now.

M0nica

It is interesting how little insight many men have or want into their lives, either physically or psychologically.

Can you elaborate? I am interested in your observation.

Marg75

I think you really have to let go when it comes to health matters with another person. My DH is the same, I put his tablets on a special marked day of the week container, he takes them out, puts them by a glass of water and walks away. They'll get taken at some point, I used to get quite upset but have learnt to walk away myself and just don't mention it. He has type 2 diabetes but has never tried to lose weight, and as for eating what he wants!! But he's just gone 80 so he's probably not doing too badly. Don't get stressed, it's his health and his life, just take care of yourself.

I did the same thing ! A marked day of the week organizer. Then he just throws out ones he doesnt want nilly willy. I gave up.

Thanks to everyone for your posts. Sorry I haven't replied till nearly midnight but our phone line is in process of going digital and I've had no internet all day.

I find it hard to detach myself from it all because I feel that if it were me I would be moving heaven and earth to try to improve things for myself and wouldn't want to rely on others to wear themselves out for me, but tbh his father was exactly like this while his mother struggled to look after him as a result of her own health problems including severe arthritis. He was a stubborn man and I fear my DH takes after him! Tbh I have little sympathy for him as a result, but being of the era that I am I feel it is my responsibility to do my best for him. For better, for worse and all that!

No, he didn't have a sedentary job for most of his working life - he was a University Lecturer so on his feet during classes.

Our marriage has not been good for many years, really since he decided that my snoring around my late thirties kept him awake so he moved into the spare bedroom one night and never returned to our bed. I tried discussing it with him (even tape-recorded myself but tbh the snoring was really not bad IMO and he was also a snorer, the difference being that I was able to blank it out enough to get a decent sleep. We never had sex again after that night and when I tried to discuss that he said he wasn't bothered about it. So we didn't "bother".

I have bought him clothes that are easy to put on but they all have problems due to the severe curvature of his back - and I recently realised that he has lost a lot of flexibility in his body. For example, he can't "find" the sleeves on a shirt in order to get his arms in - the fastening isn't the problem. Same with putting on a jacket or cardigan. With a jumper, even if he gets the arms in he has no means of pulling it down at the back. I have to do it for him. He cannot get socks on (and he wears compression stockings too for very swollen legs), but cannot use the various aids he has been given to help with that for all sorts of reasons. Partly because of the swelling, he (well it is me in reality) struggles to find shoes to fit, even if declared to be "extra wide". And because he drags his feet a pair of shoes is ruined in a matter of weeks - a lot can't be re-soled these days. As for slip-on shoes he has never tried to wear them declaring them to be "dangerous". Nor will he wear sandals or Crocs for the same reason.

I have also had to stitch buttons onto all trouser waistbands so he can attach braces with button-loops cos his severe stoop results in trousers revealing rather too much buttock! Even the braces aren't right cos he has no shoulders any more so they slide down his arms. This also leads to him not wanting jogging pants cos he has to unbutton the braces in order to use the loo (no flies in them). We have had a number of "accidents" in recent weeks with that.

For a while now I have been suggesting that we should move to a bungalow rather than our five-bed detached 9-main-roomed house but he would not hear of it, so we have spent a small fortune on a new roof, several upgrading jobs, a gardener, and other things but it seems that every week something else breaks or needs amending to make life easier.

It also doesn't help that he is a hoarder, which makes it difficult to clean and to find tools and so on when something needs fixing. Fortunately I am pretty good at basic DIY but I am getting more tired every week and unfortunately resentful. I am even imagining that all our savings etc will disappear in care fees for him such that there will be nothing left for me. His pension is more than double mine.

Oh well, no-one can really help me in this, it is one of life's burdens and many are much worse off. We have done pretty well health-wise and financially so far while others struggle. I just wish he would consider the effect on ME of his refusal to look after himself. I am burned out right now.

Thanks for listening.

I was diagnosed with PN about 8 years ago and it is an infuriating condition. I was tested for Diabetes and vitamin deficiency but no cause could be found for the nerve damage and I was informed that there was no cure and hopefully I would not get any worse. I have not been followed up at all by the NHS, and the only advice I was given by the Consultant was to make sure I had a good diet, as vitamins are important! The condition has got worse and besides not being able to walk properly, my balance is very badly affected now.

I have been going to an exercise class for balance and to prevent falls for over 2 years but I'm afraid I haven't seen any improvement.

My feeling is that the NHS is not interested in this condition and doesn't understand the frustration it causes. I have looked all over the internet for ways to help but have not come up with anything. It is frustrating that there seems to be very little research going on.

I'm sorry this is not a very positive post, I share your frustration with your husband not trying to do more, but can also sympathise with him, it is very wearing not being able to improve your situation.

For anyone who needs it, the email I was thinking of is thablelabel.com but whilst I was searching for it I came across several others with a variety of easily accessible clothing for older or disabled people.

Of you’ve got to be willing to try them.

It is interesting how little insight many men have or want into their lives, either physically or psychologically.

Just to add, I want him to live forever but I can't make that happen!

Honestly get how you must be feeling Madmeg, as I encouraged my husband to get a prostate check for years and years as I had noted "differences". Eventually I got the practice nurse to call him in for an MOT and she gave him a PSA test while he was there. He had cancer. Horrible treatment and 2 years later he is clear - after 2 years of hell for me too. JUST LET HIM GET ON WITH HIS STUFF and look after yourself. You will burn out before your time!