DH has Peripheral Neuropathy

Hello Madmeg. Im sorry but there is nothing you can do to save your DH from himself. He needs to do core strengthening exercises but like my DH, he will not bother or care. We need to just take care of ourselves and let these grown men make their own choices.

The man is 78 he hasn’t tried to engage in any physio over the last nearly decade so realistically he isn’t going to suddenly start doing any now
You don’t say what your relationship is like as a married couple if you are still a loving caring couple or just there for the duration, if it’s the latter I d get on with your life which seems as if you ve manage to conquer some big hurdles and let him just flop around in comfort in his own little way
Did he ever work? If so was he an office ‘sitter’? That can sometimes lead to bad posture
How you describe him he sounds as if he’s never had any umph ….you talk of him being slumped at 47 That’s very young to be so energyless Was he depressed ?
If you are truly worried go along with him to his next appointment and ask some questions whether you like the consultant or not, or alternatively talk to your own GP about your need to help him and how it’s impinging on your mental and physical health and see if they come up with any advice as to anything available
But
You can led a horse to water and all that ……….

I think, Madmeg that you have to detach yourself mentally from your DH's health and fitness problems. Just accept that he is how he is, that nothing you or anyone else csn do or say will ever change him. Give him help and support when he needs it and will accept it - and get on with your own life.

In very different circumstances, I had to accept that my DH's attitude to health and fitness was totally fatalistic and non-responsive.. Now he really does have serious health problems and there is no going back.

All you can do is detach yourself from that part of their lives and leave them to it, but if you still love and care about them, there will still be all those facets of personality that drew you close in the first place - and none of us is perfect.

Very wise words MOnica. I have somebody very close to me who really won't do anything to help herself - and it drives me bonkers, but I just have to grit my teeth because I love her very much.

I agree with pp comment that you need to detach yourself from your DHs health issues. Do apply for attendance allowance if you are not already doing so and get your local council in to do an assessment of your home and arrange for any equipment that will help make your and DHs life a little easier. I applied on behalf of my 86 year old neighbour who uses the money to pay for a cleaner and gardener which makes her life easier.
Some people will not engage when they have health issues and as a result may be afraid of being 'told off'. Health staff are well aware of which people engage or not when it comes to treating their patients as if they see no improvement it becomes self explanatory.
My own DH when pre-diabetic just took his tablets and carried on eating everything he shouldn't. He is now actively engaging with dietary changes that he should have done years ago under the supervision of the hospital whereas he never took it seriously with the doctors' surgery. We may yet avoid insulin injections due to these changes but it was a salutary lesson.
You are taking care of yourself and following all medical advice which is brilliant but if DH won't help himself then maybe you need to do less for him. Adapt his clothing for him to learn to handle on his own - if that means jogging bottoms, t-shirts, loose cardis and slip-on Skechers then so be it. There is all kinds of equipment such as sock puller ons and other clever gadgets that he will be able to use.
You must be exhausted with all this and I feel for you but your DH is taking you for granted with his lack of even attempting to do things for himself.

I’m very sorry for your situation Madmeg but with regard to health, have no wise words to offer I’m afraid. On a practical level, have you heard of a company called The Able Label? I first looked at them for a relative and registered online with them because a lot of their clothes are natural fabrics. They’re designed for older people, those who have had strokes or are otherwise having difficulty dressing.

I’m actually waiting for a car at the moment but will post this and come back later with their email address.

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 can empathise. My DH who when working walked miles a day, has turned into a shuffler, also haunched up too. I think this probably followed a back injury more than 25 years ago. Added to this he fractured his skull in a fall five years ago. He doesn't seem to have a lot of insight into his problems. He's a proud man and internally must hate how life is but never voices it. He's nearly 80.

I do my best to make the life we are leading as good as possible but it's tiring as I'm sure you've discovered. He has had intensive physio privately but with a nine month break. We are now back with the same physio who is excellent and never dismisses him but always encourages which gives me confidence too.

I'm not sure how to detach without feeling guilty. I just wish I did.

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!

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

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

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.

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.

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.

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.

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.

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.

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!

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.

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

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.

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.

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!

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.