Hello

[Angie_B]

Hi, I’ve just found this forum and hope it will be help me.
I’m 54 and a carer for my husband - J - who is 62.
Over the last 2 years, due to complications with diabetes and Dr’s not seeing patients, he unfortunately had 4 amputations on 1 foot & leg.

Our life has changed beyond recognition! Sometimes I don’t know what I’m meant to do?
He has always been a working man, but now sits in a wheelchair at home all day, not wanting to do anything or go out. J will not discuss his mental health and says he’s fine.
I have gone from being his wife to his carer and I really don’t know how to cope? I tell everyone I’m fine and try to be positive with a smile on my face.
I don’t know anyone in my situation at my age to speak to…
I still manage to work 3 days a week (support worker) but do most things around the house, help J shower, help him get dressed, do all the cooking & housework- when we used to share everything.
I had to fight to get Universal Credit for J and currently waiting for a date for Tribunal Court as PIP won’t pay full amount I think he’s entitled too.
I’m exhausted physically and emotionally!!

Any advice welcome

[Breezey]

Hi Angie

Welcome to the forum.

Please keep checking back for replies from others who are more versed in benefits.

Do contact the Carers UK helpline.
I would suggest an email with all details for clarity for them to help advise you.
Carers UK information and support
Our telephone Helpline is available on 0808 808 7777 from Monday to Friday, 9am – 6pm or you can contact us by email (advice@carersuk.org)

If you have not had a care needs assessment done by social services for your husband and a carers needs assessment done for you, then contact them to get booked for it.

Scroll down in this link for Carers UK links for information

Help and advice | Carers UK

[Breezey]

Hi Angie

Life has turned upside down for both of you.
There is a lot going on, care duties, working, running the house, being a wife and a carer.
Too much!
You sound exhausted physically, mentally and emotionally.
You are also out on a limb not knowing what to do because it seems that he is locking himself in and locking you out.

Do phone the helpline as they will be able to give you leads and links to other helpful organisations.

There are the psychological and emotional issues of the elephant in the room being the amputations, wheelchair, change in your relationship, change to both of your lives, it is immense and you do need to have proper supportive discussions together about this without him shutting down and professional counselling to hopefully help him come to better and more positive terms about it and rehabilitation for things he can do.

I hope you are successful with the PIP and he can get carers and a motobility vehicle that he can drive? There is guy in a local village who is a double amputee and he rides a motorbike tryke.

I am no expert in anything here but I hope this has given you some thoughts.

Without wanting to patronise you, are you active in your husbands diabetes? or locked out of it?
Have you been in the diabetes forums? They are friendly and helpful
https://www.diabetes.org.uk/?_gl=1*qlh0v4*_ga*MTg0Mzg5NTk0OC4xNjUxMDc4NjQ5*_ga_J1HFNSGEX6*MTY2NjkwODU5OS42Ni4xLjE2NjY5MDg2NjYuNTguMC4w

Forums are found in a tabs bar below the phone number at the top.
You can try doing searches for amputee and amputation.

[Charlesh47]

I’m a couple of years older than your husband, Angie, and we’re of an age where we’re brought up to be the “provider”, no tears, be a man. Never open up.

It takes quite a lot to go against that kind of programming, and your husband is likely struggling to come to terms with the effects of the amputations. While the physical part of the amputation is bad enough, the emotional effects are the worst. He can still feel the amputated parts - phantom pains are extremely common. But he can’t use them, of course. And that means his role has changed - but his programming can’t accept it. It’s quite likely, going by what you’ve said, that he’s a lot less physically demonstrative than he was before the amputations. He may well feel less of a man. But, of course, we’re not brought up to talk about this sort of thing, and so he’s withdrawing into his shell. He doesn’t want others to see him like that so no going out. No contact with friends. Especially if they worked with him (I’m guessing here but in a physically demanding role, such as construction?).

Does he do anything at all in the house, like making drinks and snacks, or cooking?

You may need to use a little tough love and point out that he still has a brain and his hands: he can still do things like veg prep, etc. At the very least. Tell him how tired you are and that you need his help. Get him to think about what he CAN do, not about what he cannot. Start with small steps and build up from there.

My wife uses a wheelchair, although she can walk a little. She had a spinal cord injury a little over 8 years ago. She can cook - on good days when she’s not exhausted - and although I do most of the cooking, I encourage her to make the Yorkshire Pudding, for example - hers is far better than mine. If I’m cooking something I’m unfamiliar with, I always talk it through with her, to involve her and to use her skills. On a good day, she’ll cook in the kitchen and I act as her sous chef, reach down the equipment she can’t, and generally do as I’m told. Which is something I’ve never been good at, but that’s a different story!

This won’t be easy. He’s developed a two year habit. It’s going to be really hard. But if you can get him to realise that life hasn’t stopped, then hopefully it will get easier.

[Angie_B]

Thank you for your advise and kind words .

[Angie_B]

I’m a couple of years older than your husband, Angie, and we’re of an age where we’re brought up to be the “provider”, no tears, be a man. Never open up.

It takes quite a lot to go against that kind of programming, and your husband is likely struggling to come to terms with the effects of the amputations. While the physical part of the amputation is bad enough, the emotional effects are the worst. He can still feel the amputated parts - phantom pains are extremely common. But he can’t use them, of course. And that means his role has changed - but his programming can’t accept it. It’s quite likely, going by what you’ve said, that he’s a lot less physically demonstrative than he was before the amputations. He may well feel less of a man. But, of course, we’re not brought up to talk about this sort of thing, and so he’s withdrawing into his shell. He doesn’t want others to see him like that so no going out. No contact with friends. Especially if they worked with him (I’m guessing here but in a physically demanding role, such as construction?).

Does he do anything at all in the house, like making drinks and snacks, or cooking?

You may need to use a little tough love and point out that he still has a brain and his hands: he can still do things like veg prep, etc. At the very least. Tell him how tired you are and that you need his help. Get him to think about what he CAN do, not about what he cannot. Start with small steps and build up from there.

My wife uses a wheelchair, although she can walk a little. She had a spinal cord injury a little over 8 years ago. She can cook - on good days when she’s not exhausted - and although I do most of the cooking, I encourage her to make the Yorkshire Pudding, for example - hers is far better than mine. If I’m cooking something I’m unfamiliar with, I always talk it through with her, to involve her and to use her skills. On a good day, she’ll cook in the kitchen and I act as her sous chef, reach down the equipment she can’t, and generally do as I’m told. Which is something I’ve never been good at, but that’s a different story!

This won’t be easy. He’s developed a two year habit. It’s going to be really hard. But if you can get him to realise that life hasn’t stopped, then hopefully it will get easier.

Hi Charles, yes my husband has always been a manual worker and is just like you say, always wanted to provide and do the “blue jobs” etc around the house - now he can’t.
But of course he won’t talk about his feelings…
I think this is exactly why he doesn’t want to go out, as we live in a small town where everyone knows everyone and I’m sure he doesn’t want people to see him like this.

He can make drinks and breakfast for himself but cooking would be too dangerous as he is eye level to the hob.
But you re right, I need to get him preparing veg etc that he can do in his chair.

He has joined the local Man’s Shed Group, so at least he goes there once a week, but that’s it.

Thanks for your help.

[Angie_B]

Hi Angie

Life has turned upside down for both of you.
There is a lot going on, care duties, working, running the house, being a wife and a carer.
Too much!
You sound exhausted physically, mentally and emotionally.
You are also out on a limb not knowing what to do because it seems that he is locking himself in and locking you out.

Do phone the helpline as they will be able to give you leads and links to other helpful organisations.

There are the psychological and emotional issues of the elephant in the room being the amputations, wheelchair, change in your relationship, change to both of your lives, it is immense and you do need to have proper supportive discussions together about this without him shutting down and professional counselling to hopefully help him come to better and more positive terms about it and rehabilitation for things he can do.

I hope you are successful with the PIP and he can get carers and a motobility vehicle that he can drive? There is guy in a local village who is a double amputee and he rides a motorbike tryke.

I am no expert in anything here but I hope this has given you some thoughts.

Without wanting to patronise you, are you active in your husbands diabetes? or locked out of it?
Have you been in the diabetes forums? They are friendly and helpful
Diabetes UK - Know diabetes. Fight diabetes. | Diabetes UK

Forums are found in a tabs bar below the phone number at the top.
You can try doing searches for amputee and amputation.

Hi Breezey,
Yes totally unturned upside-down and our home with all the disabled equipment that is in it now too.
I will call the helpline, thank you.

No, he won’t talk about his Diabetes control with me and if I mention it I’m patronising him, so I don’t now.
I really think he needs counselling but he says he doesn’t need it. I’m very open and talk about mental health issues but he unfortunately won’t yet.
I will try anything to help him and make our lives easier.

Thank you x

[Charlesh47]

Hi Angie

I used to work in a carers centre and this sort of thing crops up all the time: “I don’t want to be seen like this.” But never voiced.

It’s very typical of men our age (and older), and I’m not sure it’s much better among younger men, really. It comes as a shock though to us men: all of a sudden we’re the frail old farts we used to joke about. Life can be cruel that way. But we have two choices: learn to live with it or hide from the truth. That sounds harsh, but plugging away at getting him to do more can only help him to regain his confidence - his mojo, if you like.

Is his wheelchair the self-propelling type (big rear wheels) or the one needing someone else to push?

[Breezey]

Totally agree with Charles, I have worked in male dominated places.
The male ego is very proud, this will have ploughed right through him.
There needs to be discussions about his fears, feelings, worries of stigma etc and reassurances from you that he is sill him and how loved and valued he is and he can still make great valid contributions, but it needs to be done properly/professionally or it could be dismissed as meaningless platitudes.


Diabetes is life changing, it is a new way of life or different way of life.
My mother became Type II diabetic and fortunately for her it was a relief that it was all that it was and nothing more sinister and she felt so much healthier following diabetic diet. However it does become waring after a while with missing the contraband foods, but my father did it with her and we stuck to it when we came home, we benefited from it too and were rather glad of it.

A person I knew was a nurse for diabetics and she said that some are in denial or don’t take it seriously and have a few bad relapses before they take it seriously and some type I’s have stages of rebellion.

Please do go into the diabetes forum, look around and read and learn, it will be very informative.
He has shut you out of this for some reasons eg wants to break some rules or is angry/unhappy about it or doesn’t like all the interference in his life and body etc.

Stress, worry, fear, anxiety etc are not good for diabetics.
Maybe being home is his comfort zone, where he has equilibrium and going out is full of stress raisers and playing havoc with his diabetes. He needs to get over that by reassurances, building confidence by getting out and finding out it is easier and better than he feared and little outings could lead to bigger adventures as he desensitises to his internal fears and stigmas.

Whatever his reasons for staying home it is such a shame, I hope he can open up and have positive turnaround and start making the most of things and living life to the best that he can.

I found the diabetes forum and website invaluable when I started caring for my mother and then again when she started on insulin a few years later.
That will be knowledge you have up your sleeve, you will have some insight and understanding and appreciation also you will know how to know a hyper from a hypo and how to deal with them.
Also you can search for meds discussions, there was a medication my mother was on and had a known complication from it and was changed to a different one, I discovered the information about it in hindsight.
Don’t let on to him about your research, you could be in trouble for snooping!
Diabetics can understandably have grumpy times and some can go through depressions.

It all sounds so easy from my keyboard but in your reality, it probably isn’t.
If nothing else you have some thought processes and some diabetes research.