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

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 ?.

People seem to think carers and those they are caring for are fair game for judgement and these kind of comments. I really have never understood why.

You do you and ignore all the unwanted and unwarranted 'advice'

I cared for my husband at home because I was keeping my promise to him…..in sickness and health till death do us part.
I know I did my best and that has kept me going in moments of deep grief.
Your friend meant well . Don’t let it upset you
Sending love xx

Parksey, as I mentioned earlier, my late DH had Parkinson’s, and also Lewy Body dementia. Dementia is not uncommon alongside Parkinson’s. His personality definitely changed. It was subtle to begin with, but became worse over time. He was really quite negative about many people, and began to imagine things that weren’t true. Not his fault, but difficult for himself, and people who cared about him.

I know for a fact it would not. We put dad in a care home, mum was there every day tending to his care, taking him to the toilet, the carers were really busy.
We took dad out & nursed him at home, (we already had a hospital bed that I begged for), with the help of carers.
It was the best thing we did.
My dad passed a few months later- my mum found him & phoned for me to come over. We were able to sit with him for a while before services arrived.
Please don’t be put off caring for your husband, especially if you feel you can manage.

caduvovo

I cared for my husband at home because I was keeping my promise to him…..in sickness and health till death do us part.
I know I did my best and that has kept me going in moments of deep grief.
Your friend meant well . Don’t let it upset you
Sending love 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! 💐

🫂

Lathyrus3

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💐

Absolutely nobody would care the way you do. How could they!

Very insensitive comment and it would anger me looking after a loved one with Alzheimer’s is incredibly hard work I have experience of this as we moved dad into our home which became very much his home too, i and my husband would not have had it any other way, we did it out of love he eventually after many years of our care went into a home we didn’t want him to but it was for his safety he was having seizures and galls daily I went to visit him every day and I can tell you I’d do exactly the same for my husband just how you are doing.you do what you feel is right for you both. I wish you both all the best only you know in your heart what is right for yourself

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.

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..

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 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

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.

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

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.

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 💐

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.

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

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.

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

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.

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.

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

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.