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

My mother looked after her mother and mil. Paternal grandma had long years severe dementia. Throwing knives, verbal abuse. My semi disabled father loved his mother and treated her like a child. Laughed sometimes, when she told him that there is this strange woman coming to her room and giving her food, why not your wife gives me food. That's my wife, mum.

You keep on doing what you are doing. I'm so sorry friends and family upset you with unwanted hurful advice. Your husband is very quiet and calm. Your GP and nurses are happy with the care you are giving him. He is at home in a place that he knows with the wife he loves. He is so lucky tohave you as his wife. You are doing great. There are some very poignant and lovely responses to this thread. I do hope you will feel better now. All the very best to you.

It absolutely depends on the person doing the role of carer, how strong that person is, I don’t just mean how physically strong, but mentally!
It absolutely takes you to the edge. I’ve seen my mum on her knees in tears.
You have to do what you think is best not only for the person you are caring for, but for your own strength & sanity.
You may have carers & nurses in & out, but once they leave, you are on your own. I know as much as I love my husband, if god forbid, he had a stroke, dementia, or whatever, I just don’t think I would have the physical or mental strength to care for him. My only hope is I never have to face that.

grumppa

However common the quote attributed to Marie Curie may be, it strikes me as pretty meaningless. As a husband, I was many things over the years (as my wife was to me), and indeed became her carer until the very good local palliative care team decided that the correct thing for DW was a nursing home, and finally the hospice unit in the local hospital. But ceasing to be her carer did not make me more of a husband; nearly fifty-two years of marriage meant that we had cared for each other.

Precisely this. A situation I too went through, and my sentiments exactly.

I'm another, Granniesunite who thinks your friend was asking you to give yourself "permission" to do things differently. I think she was perhaps trotting out this message of finding another way through in case you ever needed to.

I am happy that you are doing OK at the moment and do hope this continues for you and your dear husband.

Carry on doing what you feel comfortable with and what works for you.
This situation reminds me of what I did when I had my first baby and it seemed like everyone was telling me how I should do things. I used to smile and politely thank them for their good advice then carry on doing it exactly my own way.
People mean to be helpful but we don’t always need their advice. You are a strong resourceful lady - sending you a virtual hug in the hope that it will brighten your day 🤗.

My friend had those words said to her. She cared for her dh to the end. They had a hospital bed set up downstairs and carers came in but she was there to the end. It’s what a wife would hope to do. In my opinion those words have very little substance.If they mean just give yourself a break them that is what should be said. You will know at the end you have done your very best for him.

A close friend lost her husband to dementia over a two year period. She very much feels that it was right for him to stay at home with the support of carers. She put her own life on hold in a sense and is now slowly, gradually, picking up the pieces. She has no regrets..

I think this phrase is meant well, and intended to reassure spouses and others that they are allowed to use professional care services and should not feel that their job is to look after loved ones, come what may.
Perhaps Granniesunite’s friend’s aim was to remind/reassure her that this option is there, rather than advising her that this is what she should do?
Sometimes we do need ‘permission’ to allow others to take on some of the work we think we should do don’t we?
(I am not suggesting this is the case for Granniesunite, who sounds to have things well organised and to be doing wonderfully.)

However common the quote attributed to Marie Curie may be, it strikes me as pretty meaningless. As a husband, I was many things over the years (as my wife was to me), and indeed became her carer until the very good local palliative care team decided that the correct thing for DW was a nursing home, and finally the hospice unit in the local hospital. But ceasing to be her carer did not make me more of a husband; nearly fifty-two years of marriage meant that we had cared for each other.

JPB123

It’s an awful situation for you to be in,but I bet you wouldn’t have it any other way.A loving wife ,caring for her husband,is what you are.I feel for you and send you a big hug.x

Exactly this xx

Granniesunite

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! 💐

It is very normal for husbands & wives who care for their loved ones not to consider themselves carers, whilst outsiders see you as a carer. The quote your friend mentioned to you is a very common quote and please do not let that upset you. You are a caring loving wife who cares for your husband because you love him with all your heart. I cared for my husband for 11 years my mother for 2 years at the same time and my partner for 7 years and I would do it all over again. It is a privilege to be able to care for your loved ones at home to the very end with the help of professionals, it is something you can only do if you loved them from the bottom of your heart. It takes enormous strength, buckets full of love and at times feels exhausting, but you will never regret it. If you possibly can, you stick to your guns and look after your beloved husband like you intend to at home to the very end. No one understands this unless they have been there and it certainly does not make you any less his wife, however it does make you a very special caring wife. I take my hat off to you and wish you both well on this final journey. My thoughts are with you as I truly understand how difficult this is, but never doubt yourself you are doing what you do because you are a loving and very caring wife.

Parksey

My best friend has been diagnosed with Parkinson's about a year ago. Physically she has the usual symptoms. However she often seems confused and her personality has changed. I still spend lots of time with her and support her as much as I can but feel our special connection has gone, which is very sad. Has anyone else had any experience of this ?.

My late OH had PD and the mental effects were in many ways worse than the physical ... he thought I was out to do him harm and he lost many of the social niceties that make human relations run smoothly.
Some of these symptoms can be caused by the drugs and this needs careful monitoring by your friend's family.

Indeed there is no shame in that and I had so much support and not a hint of criticism.

Agree with lucky. Do what is right for you both no matter what friends think and say. The only thing I’d add is if the situation changes and caring at home becomes too much for you then do reassess, there’s no shame in that.

You must do what feels right for you. It is no-one else's business at all and you must not let this person's comments upset you.
When my late OH reached tge last few months of his life he did go to a nursing home because I have my own physical challenges and some of the behaviour towards me caused by his illness made it a sensible decision.
But it was mine and my family's to make another business of no-one else.
You do what is right for you.
Take care

By the time my husband died I suppose I was more his carer than his wife, but caring for him was a big part of being his wife. He spent his last weeks in hospital, mainly because until the last few days we hadn't known they were his last weeks. He was a large man and it made such a difference having a couple of male nurses on hand to move him every time he slipped down the bed. Also nice to have nurses popping in with cups of tea for me. I think my husband would have been happy if he was ever aware of what was happening as the staff were all people he knew.

I hope that now you've shared your feelings, you can get back to caring for your husband and will not give these comments any more head space. granniesunite you are doing a wonderful job 💐

I absolutely agree with what GrannySomerset wrote. My husband was 6’2’ to my 5’, in a wheelchair, had dementia, Parkinson’s, and a catheter which he sometimes pulled out. I did manage to look after him at home until he died but couldn’t have done it much longer. Your friend was trying to be kind, she is fond of you and sees how exhausted you are. I am sure she never intended to distress you. I hope you can care for your husband at home until the end but never feel guilty if it all becomes completely overwhelming and you need a break, even for a few days. I am sure he would never wish you to be so utterly exhausted and miserable that you can only just cope.

It’s an awful situation for you to be in,but I bet you wouldn’t have it any other way.A loving wife ,caring for her husband,is what you are.I feel for you and send you a big hug.x

Forget what was said to you by this person, she is quoting a remark often heard nowadays. A friend of mine was also dreadfully upset when an end of life nurse said the same to her.

What better way could you be a wife than caring for your DH until the very end. You have been lovingly caring for him all this time and had already decided on his future care. You know best not your friend. Take care and try to forget what was said if you can. Caring for him like this is a privilege.

I was my husband's carer for just over 4 years. I was always his wife, never just his carer. It was probably a remark made based on what they would do. Don't take it to heart. You do what is best for you and your husband. Take care

All of that is understandable GrannySomerset, it’s the unwanted judgement and advice when it’s already isolating. I suppose it’s a case of just listening really 💁‍♀️

I recognise the desire to care for the partner you love but if you don’t have family support nearby it can become totally exhausting. My DH, 6’ 4” to my 5’ 2”, lost his sense of balance as Parkinson’s progressed and was not physically safe at home any more. He spent his last seven weeks in a local nursing home, furious with me at first but with the occasional rational burst of thought recognising that we couldn’t have gone on as we were. I saw him daily though he refused to speak to me at first and although I would much preferred him to have stayed at home it really wasn’t possible. It took me a full year after his death to recover as I was totally exhausted. You do the very best you can for as long as you can and, if you are lucky, you will get to the end where as you planned..

My husband, previously fit and healthy and an active volunteer driver, had a devastating bleed on the brain in February. He is now hemiplegic, struggles a bit with speech and is only continent during the day. He is coming home shortly, and it is going to be a huge struggle caring for him, but I want to do as much as possible for him, with minimal outside help. I was incensed, like you, when a physio at the hospital said 'you are his wife and friend, you shouldn't be his carer too!'. Given the shortage of NHS staff I have been doing most of his care from the beginning, and will certainly continue to do so, rather than wait for carers any time between 7 and 11 am, and them putting him to bed before six pm so they can go home to feed their families.