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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.

(85 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.

Shelflife Fri 20-Jun-25 16:12:52

Of course you are his wife and and always will be. I fully understand your desire to have your DH at home with you, however if the time does come when residential care is necessary please never feel you have let him down . My lovely Mum lived with us for 3 years and I had no intention of finding residential care for her, however without going into too much detail life became extremely difficult! and we had to find a good care home for her.This gave me back some control of my life. On visits I could stay with her for a long period or take her out to a cafe. If she was having a bad day nothing I did or said improved the situation, so I could leave for home.
I fully recognise the fact you care for your DH - so different from a parent.
My DH has Alzheimers Disease although he is not in the latter stages. I am under no illusion about the future but if his behaviour is anything like my Mums I can not be sure he will remain at home.
Time will tel1! It will be a sad end to our marriage, we celebrate 51 years of marrisgethis weekend! He is my everything .
I wish you well , you must follow your thoughts abd not be influenced by others. Whatever happens you must look after yourself , whereever your husband is he will benefit from your sound emotional and physical health.
Good luck. 🌹🏵

fancythat Fri 20-Jun-25 16:45:10

Ridiculous[though appreciate I have not been in this position].

A wife and husband are carers of each other.
They are not sepearate. In good times or in bad.

Being a selfish person is now looked on as being a good thing. It is not. Never has been. And never will.

BlueBelle Fri 20-Jun-25 16:48:02

Ignore your friend you’re doing very well It works both ways and each is right for different situations
My Nan with dementia came to live with me and I looked after her until she died three years later it was hard going with three young children as well but not impossible
With mum and dad ….. when my Mum got Alzheimer’s my dad tried so hard to help mum but she was fiercely independent and couldn’t accept any help so it all got so fraught and upsetting Mum was getting up in the night trying to cook meals so Dad was getting no sleep then he got taken into hospital with exhaustion and a breakdown I was working full time helping with two young bereaved grandchildren and visiting mum and dad to help everyday, there weren’t enough hours in the day
We really had no choice but to find a care home for mum it has played on my mind ever since

You can never feel right about this awful illness whichever way you go
You are doing what sounds like a brilliant job

Shelflife Fri 20-Jun-25 18:35:23

Keeping quiet I fee1 must disagree with you. I am first and foremost a wife , I am also his carer. My lovely man has Alzheimers Disease and although not in the latter stages , life has become complicated. He is often unable to recall recent conversations , has distorted ideas about people he knows not liking him and his short term memory is very poor. I deal with these situations with care therefore I am his carer. I need that title and want others to recognise it too!
Being my husbands carer does not diminish my role as his wife. We have been married for 51 years and it breaks my heart to see him in this position.
Being a carer is something to be proud of, not a situation that diminishes our relationship as husband and wife. I am under no illusion as to what the future has in store for us and if being recognised as his carer gives me strength and support - so be it! People do say " I am not his carer I am his wife" That is a view I respect but for me I don't think so!!!! Of course I am his carer. If we think about it all sound relationships are caring relationships! Being a carer in my position is something to be proud of.

M0nica Fri 20-Jun-25 21:26:48

Where does being a wife and being a carer seperate. DH does not have dementia but he does have quite severe heart problems.

In this hot weather I have been caring for him by making sure he keeps in the cool, has lots of drinks and other measures to stop any strain on his heart, but isn't that something you would do for anyone you loved?

Shelflife Fri 20-Jun-25 23:46:00

You are correct Monica. we care for those we love. For me being a wife and and carer never separates - the roles are intertwined.

Granniesunite Sat 21-Jun-25 01:19:35

Thank you all for taking the time to reply. Gransnet at its best.💐💐💐

After a difficult day today I have to say I’m a very washed out wife/ carer but content that my husband is comfortable and our family are all around us.

What more do we need at times like these but love and support from those we love.

Whiff Sat 21-Jun-25 07:14:21

Granniesunite love for the other half of yourself is worth all the heart ache. Together you make a whole . I know it's hard but I look at it this way . Some people live their whole lives and never find the other half of themselves. But we did . Your husband may forget you but he won't forget love.

My husband died from cancer aged 47 in 2004 but he is still my husband. When my mom's dementia killed her but her body lived even all what I went through we her . She still told me everyday she loved me even though she called me mom and I believed her.

Love for your husband will get you through everyday. He is still the man you know he's still there but lost. And you know deep down all the things he would say to you . And in your darkest moments remember all the funny ,stupid things he did and it will make you smile. And with your family help them remember those times to. 🌹🌹

Marydoll Sat 21-Jun-25 08:01:04

Granniesunite, my mum did the same for my chronically ill dad, she nursed him for twenty years and even when he developed vascular dementia, she nursed him at home, until he died. She did it because she was his wife.
Keep doing what is best for you and your husband. Take care.💐

keepingquiet Sat 21-Jun-25 08:05:57

Shelflife

Keeping quiet I fee1 must disagree with you. I am first and foremost a wife , I am also his carer. My lovely man has Alzheimers Disease and although not in the latter stages , life has become complicated. He is often unable to recall recent conversations , has distorted ideas about people he knows not liking him and his short term memory is very poor. I deal with these situations with care therefore I am his carer. I need that title and want others to recognise it too!
Being my husbands carer does not diminish my role as his wife. We have been married for 51 years and it breaks my heart to see him in this position.
Being a carer is something to be proud of, not a situation that diminishes our relationship as husband and wife. I am under no illusion as to what the future has in store for us and if being recognised as his carer gives me strength and support - so be it! People do say " I am not his carer I am his wife" That is a view I respect but for me I don't think so!!!! Of course I am his carer. If we think about it all sound relationships are caring relationships! Being a carer in my position is something to be proud of.

Maybe context is everything here. I completely agree that you can be both but to say someone is not your wife but your carer, seems slightly derogatory to me. It suggests the relationship has slightly fractured. This man does not have Alzheimers but lots of physical problems.

I didn't want to put anyone down by my statement, in fact I was rather clumsily expressed a view that I know many people hold.

Family relationships should always be caring ones, as Monica says, but all too often they fall short of this ideal.

Caring for a loved one is hard, I know because because we tried our best to care for our mum until we realised it had become too much. She died a week later in a comfortable care home. We didn't regret our decision.

M0nica Sat 21-Jun-25 20:17:44

I think caring decisions will always be personal, and it is not a sign of failure for someone to say that they can cope no more and that someone else must take responsibility for caring for someone dear.

How much better to go to a care home each day and sit with someone you love and keep them company, knowing that all the proper help and equipment needed to care for them is immediately at hand, than to struggle at home and as someone described in another thread recently, injuring herself trying to lift her DH when he fell, and then having to leave him lying on the floor for an hour and a half until the paramedics arrived.

cc Sun 22-Jun-25 13:48:01

M0nica

I think caring decisions will always be personal, and it is not a sign of failure for someone to say that they can cope no more and that someone else must take responsibility for caring for someone dear.

How much better to go to a care home each day and sit with someone you love and keep them company, knowing that all the proper help and equipment needed to care for them is immediately at hand, than to struggle at home and as someone described in another thread recently, injuring herself trying to lift her DH when he fell, and then having to leave him lying on the floor for an hour and a half until the paramedics arrived.

Of course we all hope that we would be able to care for our spouses if they get dementia, "till death us do part" is what we signed up for.
However I don't know how I would feel if I was in this position. One of my neighbours was determined to care for her husband at home but just was not temperamentally suited to doing it. She got very short tempered and was sometimes heard shouting at him during the night. I suspect that she would have felt guilty if he had gone into a home, but also suspect that it would have been better for both of them.

queenMab99 Sun 22-Jun-25 13:49:52

I don't think your friend was cruel as a pp said, but she doesn't know how you feel, and was perhaps just letting you know that if you did want to do things differently, that you would be supported. As it is what you want, just carry on as you think is best for the two of you.

creakingandchronic Sun 22-Jun-25 13:52:59

It is a well-known saying but does not apply to you and should not be said to you.
You have made your decision; you have support, but if you at any time change your mind, that's fine too.
The caring you have done so far is marvelous. Well done to you. you are a strong woman who has done well.
good luck in the future. I wish you and your husband strength and peace.

Sharr22 Sun 22-Jun-25 14:12:40

I think your friend meant well. Explain that it isn't a burden and accept all help that is offered. Caring for someone at the end of their life, used to be done at home but now increasingly by hospitals and care homes.
Care homes value family involvement but as long as your husband is getting the best care does it matter who it is from? Ultimately it is his welfare, that's important.

Daffonanna Sun 22-Jun-25 14:40:45

Such a kind thoughtful discussion , thank you for this . I regularly visit a good friend who has had dementia for years, so that I can offer a change of company and a couple of brief hours respite for the partner . I often feel I want to ‘advise ‘ as I am concerned by the health consequences of such a huge rapidly increasing burden on an aging full time carer . . I don’t , and now having read this thread , I won’t . It could be any one of us and one day I would probably feel the same way .

Norah Sun 22-Jun-25 14:43:27

Sharr22

I think your friend meant well. Explain that it isn't a burden and accept all help that is offered. Caring for someone at the end of their life, used to be done at home but now increasingly by hospitals and care homes.
Care homes value family involvement but as long as your husband is getting the best care does it matter who it is from? Ultimately it is his welfare, that's important.

I agree. Friend spoke hastily, probably meant well. Only OP can decide. We've always been able to care at home - not all people can. As things are proceeding well, husband is content - perhaps just continue on?

grannybuy Sun 22-Jun-25 14:45:17

I dare say the friend was thinking of the burden on you to a great extent. I live with the guilt of my late DH being in a care home latterly. Unfortunately, he had Parkinson’s disease and Lewy Body dementia, which comes with very psychotic episodes. I was the imagined ‘ bogeyman ‘, and he seriously wished to harm me. At the same time, I was also carer for an AS, who has learning difficulties, and was still at home. I’d have love to have been the wife who would care in sickness and in health till death parted us, but it just isn’t always possible. However, I visited him every day, took him out with the help of friends, until it was no longer possible, and still looked out for his care and well-being. It just isn’t always possible to give the required care by yourself. Wishing you well, Granniesunite, and I hope that you are able to care as you’re doing for as long as possible.

mrsgreenfingers56 Sun 22-Jun-25 15:08:29

You are more than keeping your marriage vows and doing what is best for you and husband.

You stick to your guns and just smile when people say things like that and say "Well I think differently"

I am currently caring for my 94 year mum who has dementia and the amount of people who have told me to put her in a home I have lost count of. Mum's worst nightmare going into a home so with carers and my sisters mum is staying put and we are doing our best as you are.

Keep your chin up and we all wish you well from the bottom of our hearts. Take care.

4allweknow Sun 22-Jun-25 15:15:47

Has the person giving you the advice looked after a very close relative at all. I think they have just as you say copied it.
I really wanted to care for my DH until the end but wasn't given the chance with no support offered. I couldn't physically manage him both of us landing in a heap on the floor and he was in such pain that the only way it could be controlled was in hospital. You feel you can manage and have done for quite some time so keep going. No one, absolutely no one can tell what's best for you in your situation.

Chaitriona Sun 22-Jun-25 15:37:24

. I think your friends remark may be so painful for you because she has in a sense disrespected him as he is now and denied your life's journey together and the feelings you have which will never be those of a professional carer. How could they be? You are doing a very good thing and are to be commended. I know it cannot be easy. I hope your husband remains calm and that he will pass peacefully at home but that if things do become too difficult for you that you will find the strength to accept this too. My blessings

Bluesmum Sun 22-Jun-25 15:56:14

I am very curious to know what sort of role your “friend” thinks you should now be doing as a wife, if not caring??? I truly believe you can only really care for someone with dementia, or any other terminal condition, the way you are doing, if you really love them and are devoted to them. I nursed my husband, who I adored, for a long number of years, I was his wife, therefore I cared! I have neighbours who have both been married previously, raised loving families and both lost their partners to cancer. They are both late seventies, and admit they married again mainly for convenience and economic reasons, to stop any gossip and to please their families. she is the cook/housekeeper, he is the gardener/handyman and they get along fine with their arrangement. Unfortunately, he has how developed early stage Alzheimers and they have already sorted out a nursing home for him as she admits there is no way she will cope as the disease progresses. Very sad, but I think very brave and honest of her.

Snowbelle Sun 22-Jun-25 16:01:56

You are doing the right thing Absolutely. 💐

Bluesmum Sun 22-Jun-25 16:04:38

I am sorry, my previous message sounds really dreadful now I have re read it and I don’t know how to delete it!!! I was trying to show we are all different and cope differently in similar circumstances. I do most sincerely apologise if I have offended anyone, really not intended!

marymary62 Sun 22-Jun-25 16:43:26

However well meaning this advice was it is a fairly trite and over used comment. For 6 years you have been your beloved husband’s devoted wife, caring for him with all the love you have. It is you who make the decisions here and it is you who define your relationship with your husband in these final months. You have cared for him so beautifully for so long I really think it might be heartbreaking for you to relinquish this to a care home , and it sounds like you have a lot of support from professionals . You have my admiration. I love the thought of treating this like an ansaphone - ignored once the person stops speaking -absolutely . Carry on .