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

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

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!

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! 💐

🫂

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

🫂

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.

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 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

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'

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 ?.

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 .

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!

You are doing the right thing Absolutely. 💐

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.

. 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

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.

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.

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.

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?

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 .

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.

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.

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.

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.

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.

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.