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Care & carers

I’m normally a see it from all sides kind of person so finding my feelings on this advice very hard.

(84 Posts)
Granniesunite Fri 20-Jun-25 09:36:48

I’ve been caring for my husband for over six years. He has Alzhimers and now is entering the last stages of his illness. It has been very difficult but I’ve coped well. I think.

I’m getting lots of well meaning advice from friends and family about what I now should do re his final months but my decision is to keep him at home with help from care company district nurses and myself not residential care or hospital. GP and nurses happy with that as he is very quiet and calm.

Last night a very well meaning friend said to me that letting go and getting residentially care would allow me to be his wife again and not his carer

This remark has upset so much it has kept me awake all night as I’ve always felt I was his wife. It has had such a negative effect on me I can’t quite rationalised it and move on.

I know it’s a quote from Marie Curie and I have enormous respect for the work they do.

How do I forget it and move on.

CariadAgain Fri 20-Jun-25 09:40:23

She did mean well I guess - so it's probably best to say "Thanks for the concern - but my decision is different on this". It was doubtless just a one-off (meant to be helpful) comment.

But you do you and, if what you want is keeping him at home and it's possible to do so = that's what you do.

Elowen33 Fri 20-Jun-25 09:51:46

Most people give advice relating what they would do in the circumstances.

You must do what is best for the both of you, you seem to be coping and your husband is being cared for in the way that you both want, other peoples opinions are irrelevant even if they are well meaning.

flowers

LOUISA1523 Fri 20-Jun-25 09:57:24

It was likely a throw away remark...she had heard it somewhere and relayed it to you....she's now forgotten she even said it.
You make choices that are right for you ....don't even give it anymore head space .... hard times but they are your hard times...no one else's 🌻

AmberGran Fri 20-Jun-25 09:59:18

My mother would agree with you - she nursed my father at home for eight years. He was finally taken to hospital just before he died. She would say 'I nursed my husband at home because I was his wife.

Granniesunite Fri 20-Jun-25 10:12:26

Thank you so much for your replies.

I am doing what I think is best for the both of us and hard though these times are I’m doing it because I am his wife.

That’s my response from now on so grateful to you all.

Off now to get on with caring for my husband feeling a lot lighter! 💐

ExDancer Fri 20-Jun-25 10:16:14

We looked after mum at home until the end, though she sadly did die in hospital because she fell and broke her pelvis.
A wife promises to look after her spouse till death them do part - and that's what you're doing - keeping your vow.
What a load of nonsense your friend is spouting, your husband is enormously lucky you have the temperament to cope with him, and her remark was cruel and thoughtless.
If you do have to let go eventually and let him go to residential care you will know you've done your honest best for him. Don't let anyone make you feel guilty, you are a star.
All strength to you! XX

V3ra Fri 20-Jun-25 10:19:01

...my decision is to keep him at home with help from care company district nurses and myself not residential care or hospital. GP and nurses happy with that as he is very quiet and calm.

That's exactly the situation my Dad was in when Mum was dying with Alzheimer's.

We visited when we could but we were four hours away and both working full time.

When Mum reached the last stage where she wouldn't drink fluids she became very dehydrated and couldn't stand.

Her GP explained that she could be strapped to a stretcher, carried downstairs, taken in an ambulance to hospital and put on a drip.
That would have given her at most another three weeks of life.

The alternative was to keep her at home, in her own bed, comfortable clean and warm with Dad, who she still knew, sitting by her.
Without any further medical intervention she would die within the week.

Dad wanted to keep her at home, we all agreed, her GP increased the support help visits.

Mum died peacefully in her own bed three days later, ironically when Dad had popped downstairs to make himself a cup of tea!

We have no regrets whatsoever about keeping her at home.
Mum maintained her dignity and had a peaceful, comfortable death.

Granniesunite if you want to keep your husband at home and you have a good support network, then don't listen to people who haven't got the imagination to see that this is what is right for you and your husband.

Very best wishes xx

Freya5 Fri 20-Jun-25 11:27:45

Granniesunite

I’ve been caring for my husband for over six years. He has Alzhimers and now is entering the last stages of his illness. It has been very difficult but I’ve coped well. I think.

I’m getting lots of well meaning advice from friends and family about what I now should do re his final months but my decision is to keep him at home with help from care company district nurses and myself not residential care or hospital. GP and nurses happy with that as he is very quiet and calm.

Last night a very well meaning friend said to me that letting go and getting residentially care would allow me to be his wife again and not his carer

This remark has upset so much it has kept me awake all night as I’ve always felt I was his wife. It has had such a negative effect on me I can’t quite rationalised it and move on.

I know it’s a quote from Marie Curie and I have enormous respect for the work they do.

How do I forget it and move on.

You are still his wife, you I'm sure are doing a wonderful thing. Being a caring loving wife, in sickness and in health. If you're getting good support, take no notice of what others say, trying to be helpful, but not being so. Best wishes.

Beechnut Fri 20-Jun-25 11:34:15

Freya5

Granniesunite

I’ve been caring for my husband for over six years. He has Alzhimers and now is entering the last stages of his illness. It has been very difficult but I’ve coped well. I think.

I’m getting lots of well meaning advice from friends and family about what I now should do re his final months but my decision is to keep him at home with help from care company district nurses and myself not residential care or hospital. GP and nurses happy with that as he is very quiet and calm.

Last night a very well meaning friend said to me that letting go and getting residentially care would allow me to be his wife again and not his carer

This remark has upset so much it has kept me awake all night as I’ve always felt I was his wife. It has had such a negative effect on me I can’t quite rationalised it and move on.

I know it’s a quote from Marie Curie and I have enormous respect for the work they do.

How do I forget it and move on.

You are still his wife, you I'm sure are doing a wonderful thing. Being a caring loving wife, in sickness and in health. If you're getting good support, take no notice of what others say, trying to be helpful, but not being so. Best wishes.

I agree with what Freya5 says and I’m glad to see that you now feel better Granniesunite

Lathyrus3 Fri 20-Jun-25 11:43:30

I looked after my husband at home until he died - with help as you are doing and there was never a moment when I didn’t consider him to be my husband and that I was his wife. Who else would I care for in that way?!

It was one of those trite “sound bites” that people hear and then repeat without any thought. I’m afraid you might hear lots of them in the future, from all kinds of people.

I hope you are able to continue to care for your husband as you wish and that you get the support to enable you to do so💐

silverlining48 Fri 20-Jun-25 12:08:58

I am sure the comment was meant well and your friend may have been concerned for you because caring for someone with dementia is not easy.
If some of the personal care can be done by others it takes some of the weight of day to day personal care, from the shoulders of the carer it leaves more quality time for the family to spend together. I hope you are not cross with her also that
you are getting enough help. flowers

Granmarderby10 Fri 20-Jun-25 12:13:28

Some peoples notions of being a spouse do not include dealing with intimate care needs even if they have had children and will have performed at least some of these duties as a parent through childhood ailments and possibly also cared for an elder relative similarly.

I find this hard to understand in some ways personally, but I am not there yet and I can well imagine the trauma of nursing or even just witnessing the progress of a terminal illness at home, for someone who was once before they were anything else to us our lovers.

Couple any infirmity with any type of dementia together and there is the affect on the spouse as carer/nurse and their own physical stamina and mental resilience to be considered when coming to a humane decision.

Wyllow3 Fri 20-Jun-25 12:15:02

Elowen33

Most people give advice relating what they would do in the circumstances.

You must do what is best for the both of you, you seem to be coping and your husband is being cared for in the way that you both want, other peoples opinions are irrelevant even if they are well meaning.

flowers

This! flowers x

welbeck Fri 20-Jun-25 13:05:01

Just ignore her. She's ignorant.
It's none of her business.
You don't have to justify your decisions to her or anyone.
I find some people do opine in this way. It's patronising and stupid. They assume they know better and can interfere telling you what to do in the most personal family matters.

Smileless2012 Fri 20-Jun-25 13:17:31

You say she's a ^very well meaning friend^Granniesunite so it's very unlikey that she meant it as criticism or a judgement, so put it out of your mind and keep on being the caring and loving wife, you clearly are flowers.

kittylester Fri 20-Jun-25 13:36:04

So long as you have got enough help to cope without it becoming too much for you, then stay as you are.

Astitchintime Fri 20-Jun-25 13:52:15

She obviously meant well but you must do as you wish regarding caring for your husband. If he is safe, comfortable and his needs are being met surely there’s nothing to be gained by moving him, in fact it could have a detrimental effect on him.
Naturally Granniesunite, do try to have a little time to yourself but otherwise it sounds as though you’re doing an amazing thing for your DH. Keeping you in my thoughts 💐 Stay strong

keepingquiet Fri 20-Jun-25 13:58:45

I agree- ignore this comment.

I know someone who refers to his wife as his 'carer' but she isn't, she is his wife.

Let people think what they think- you do what you can and ignore this silly woman.

Whiff Fri 20-Jun-25 15:00:42

I had my mom live with me the last 18 months of her life she had cancer but also had dementia. I couldn't put her in a home and knew I could look after her better myself. And I did look after her on my own. Even when the dementia got worse and she forgot how to wash her face,arm pits and brush her teeth. She could do it but had to talk her through how to do it. When I couldn't let her downstairs anymore. I had a pressure mattress and blow up boots to protect her skin and a commode.

I am proud of the fact my mom never had a sore on her body. I made sure of that . When my mom died 4 months before her body and the first time she bite me I was shocked and knew she would do more. But it wasn't out of malice she attacked me but FEAR mom would go to sleep and wake up not knowing who she was ,where or who I was. She thought I was her mom . Even after a violent outburst she would tell me she loved me . My mom never swore unless it was bloody I didn't know she knew the words she used. The lucid moments got shorter . But still I looked after her.

Dementia took everything from my mom expect she always knew when she needed the commode. Her greatest fear her adult life was to wet the bed but mom never wet or soiled herself. When she came to live with me she insisted on wearing a pad but I only used a thick tena lady .
Before the violence she did threaten to throw herself down the stairs I said ok but I won't pick her up so she said I won't then.

When mom died but her body lived I hoped ever morning she had died in her sleep. But my mom would have hated what she became ..

Only you can know what you can cope with and it's not easy and after mom died it took me a year to remember my mom how she was before the violence.

The Wednesday before she died she said mom can we cuddle and I will sing the songs dad taught me . For a hour she was my mom and that's a memory I cherish.

My children didn't want me to look after mom . But I knew what happened to some people who put their parents in homes . The sores they had and falls .

My mom didn't fall or have the sores. But she did have a big bruise on her forehead . I had a bed bar so she wouldn't fall out of bed and padded it with pillows. One day she smiled at me and quick as a flash moved the pillows and hit her head on the bar . Told she the police would put me in prison . That is what looking after someone with dementia is like .

I phoned the doctor to tell her so it was recorded on moms notes.

We all have to decide how much heart ache we can take . But I am glad I looked after my mom even though it cost me healthwise. And would do it all again .

Yes I became my mom's carer but I was still her daughter.

I had nursed my husband until he died from cancer but I was always his wife and he was my husband and still is . Just because you become a carer doesn't mean you loss the relationship you have with your loved one . I didn't with my dad when I looked after him with my mom 10 years she died.

Norah Fri 20-Jun-25 15:21:21

Perhaps pray to accept her opinion as well meant.

Continue on as you and your darling husband wish.

Iam64 Fri 20-Jun-25 15:26:42

Granniesunite, your friend, as you said, was well meaning, if very insensitive. Of course you will always be his wife. You sound to have been managing it all really well. You have good practical support and love and resilience with you.
Wishing you the very best xx

janeainsworth Fri 20-Jun-25 15:38:59

You don’t have to see it from both sides Granniesunite.
Seeing things from both sides applies to two people having a dispute or argument.
Your friend made a remark that in my view,. at the very least, was insensitive and out of order and if someone said that to me, if I were in your situation. I’d be beyond angry.
Of course you’re his wife. Why can’t you be your husband’s carer and his wife? I have at least one friend who is exactly that for her DH.
What happened to in sickness and in health and till death us do part?
You’re doing your very best for your husband and that’s all you have to do.
My best wishes to you.

M0nica Fri 20-Jun-25 15:41:58

Some people can be guaranteed to make trite remarks like an ansaphone message because they have trite ansaphone minds.

Treat them like an ansaphone - do not give them a thought once they have stopped speaking

Crossstitchfan Fri 20-Jun-25 15:44:40

I haven’t had time to read all the replies, so if I am repeating what has already been said, I’m sorry.
My take on this is:-
You are his wife, no matter what. If part of that includes caring for him, well, isn’t that what any loving wife would do? In my case, it didn’t come to it, he died before I was needed, but I would have cared for my late husband for as long as I could,at home if I could.

The difference is:-
A carer does it because they are paid to.
A wife does it because she is his wife and she loves him.

There is a big difference. You are definitely and indubitably his wife!
Carry on doing what you feel is right for the both of you. Ignore well meaning friends. They aren’t going through what you are going through.
If, in the end, it is necessary to put him in a home, well, you have done everything in your power to avoid that, but sometimes you can only do so much.
Be guided by your instinct and how well you know your husband. 💐