Grief is strange after losing someone with vascular dementia

[flower1]

Hi, I have not been on here for a while after losing my mum to vascular dementia (after 5 years of suffering). It was really hard to watch my mum decline over the years and I spent every day with her in her last 14 days in end of life care. Its been quite hard the grieving process since losing mum, one part of me so relieved she is not suffering in that 'dementia world' any more, another part of me grieving for the mum I knew before the dementia and then the fact that she is no longer here, cannot hold her hand, hug her, kiss her..... I am really starting to realise that nobody really understands how you feel losing somebody to dementia unless they have walked that path. Because somebody has been so ill for so long they expect you to have time to get used to it once they have passed away - but this is not the case. I am sorry to go on but I hope to link up with those on here for support. My work has not been very supportive either especially the comment from my boss 'don't bring your troubles to work' which I don't do anyway always remain professional but then I am only human....
Thank you for reading xx

 

[woodbrooklabs]

What a horrible boss.

I haven't experienced this yet, but I'm sure it is so difficult to come to terms with.

Try and remember all the good times and don't focus on the bad.

Sorry for your loss.xx

 

[jan.s]

Hi Flower

I am sorry to read about your Mum, it is so hard losing someone close, to dementia. It's hard enough losing someone, but watching them deteriorate slowly and become a shadow of their former self is so tough.

I lost my husband in April, and totally understand how you feel. Nothing prepared me for the emptiness I feel in my life - selfish, maybe, I know given the choice, Roger would want to share our retirement.

As you say, I miss his physical presence, even though he was in a care home, he was still there to touch and hug, and of course I lost him mentally, and it is so difficult to look at the one you love in the later stages of dementia.

Sadly, I had no warning that he was going to pass away. I was with him in the afternoon, and noticed he had a cough; overnight it developed so rapidly that he passed away the next morning. Thankfully I got there in time to say goodbye.

A friend said to me, "well you lost him a couple of years ago!" Yes, I did, but I still loved the man i had left.

I also understand about non sympathetic work. I had the same attitude at work when Roger was very unwell. Thankfully I was old enough to retire!

Still enough rambling, I have to get on with my life in the way I know Roger would have wanted. I am thankful that I have had him in my life and the love we shared. I miss him, but always try to be positive when I'm with friends, and try hard to keep busy.

Thinking of you. Jan x

 

[marionq]

How mean spirited of your boss. I would advise you to compartmentalise and save your grief for private but a decent workmate would let you know that they are there for you if need be.

You have no doubt learned who your friends are.

 

[granma]

Hi, I have not been on here for a while after losing my mum to vascular dementia (after 5 years of suffering). It was really hard to watch my mum decline over the years and I spent every day with her in her last 14 days in end of life care. Its been quite hard the grieving process since losing mum, one part of me so relieved she is not suffering in that 'dementia world' any more, another part of me grieving for the mum I knew before the dementia and then the fact that she is no longer here, cannot hold her hand, hug her, kiss her..... I am really starting to realise that nobody really understands how you feel losing somebody to dementia unless they have walked that path. Because somebody has been so ill for so long they expect you to have time to get used to it once they have passed away - but this is not the case. I am sorry to go on but I hope to link up with those on here for support. My work has not been very supportive either especially the comment from my boss 'don't bring your troubles to work' which I don't do anyway always remain professional but then I am only human....
Thank you for reading xx

As someone who was diagnosed with Vascular Dementia last year all I can say is that every moment you spent with your mother was very precious to her. I have no idea what the future holds for me, I am nearly 66, have a beautiful daughter whom I love with all my heart (as I do my husband, grandsons and son-in-law) but please rest assured that her love for you will never ever have `gone away`. Remember the great times you had together, and it is okay to be cry if you want to. Take care of yourself, granma

 

[Rheme]

Couldn't have put that better myself Granma. So eloquent and heartfelt. Thank you.

 

[LadyA]

It does seem so final flower, doesn't it? I think that while we have "lost" the person we once knew to the dementia, it's a different kind of loss when they die - and I know, for me, that seemed to make my husband's death even more of a shock. His death wasn't unexpected. But the absolute loss was very unexpected. Because of the dementia, I thought I was so prepared. I thought I had, in so many ways, already "lost" him, and (foolish me!) I thought that in a way, that would make his death "easier". I thought I had done so much grieving over him already, over the illness and all it had stolen from us. What a shock, to find that it doesn't work like that at all! Bereavement - being bereft - that was exactly how I felt when William finally died. Still feel, but not all the time now. And one of the most powerful things, that I think - although my mum is still living and healthy - would also hold for a mother's love - what I felt most terribly - was the knowledge that no-one else loved me like William did. I imagine the loss of a mother's love would be surely felt as keenly.

Modern society doesn't like to speak or hear about death and grieving. They don't want to see the bereaved still grieving after a period of time has passed - I think it's a bit like whistling in the dark. Don't mention death. It might be catching! We are all exhorted to forge ahead, be positive, not entertain any negative or "depressing" thoughts, mind our mental health etc. etc. But sorrow and grief are a part of life's experience, by which we grow. I've said it before - in years gone by, the bereaved would have worn deepest black for around a year after the death of an immediate family member. It had a lot to be said for it - it gave people who saw them the information that they were mourning, and it gave the bereaved person the space and time to grieve. They weren't expected to get over the death in a matter of weeks. In fact, society would have been shocked! So, I think we need to at least reclaim some "grief space" - take time out when we need it. Cut ourselves some slack. And when we need support and (hopefully) understanding - well, that's what TP is for!

Hugs to you.

 

[Blackcat20]

Hi Flower,

I am so sorry for your loss, and know exactly where you are coming from as I went through the same thing when my Mum (who had Alzheimer's) died in June 2014. I think the death of a loved one who has dementia is doubly difficult because we grieve for who the person was before the illness, but also for the person with the illness who may have changed, but who we still loved so much.

Like you, I spent the last fortnight of my Mum's life by her bedside, wishing her in a way to be free of all the indignities of this awful disease, but still dreading the moment of losing her. Like you, too, I had a horribly unsympathetic boss. I will never forget the email he sent as I sat by Mum's bedside in the hospital two days before she died - he was asking me about where some documents were in my office, and if I could fill in some forms for him. He ended by saying "I know this is probably not a very good time to ask you this, but I'm sure you will agree that the good work of X committee has to go on". Just because Mum had dementia, he seemed to think that her death was somehow less valid, less important. It made my blood boil. Strangely enough his own father is now in a care home, and is suffering from memory problems, so perhaps one day he will understand.

I still miss Mum and think about her every day, but one thing I have found to help a lot is to have done some practical everyday things to remember her. Our local council offers various ways to celebrate a loved one's life, and I have had a laburnum tree planted in our local park, some daffodils planted on the ancient walls of our city and also sponsored a bench with a plaque in Mum's memory. Maybe you could do something similar? When I feel sad, or wish I could talk to Mum, I go and sit on her bench and look at her new little tree, now growing strongly, and it gives me a sense of connection and hope, just knowing that she is remembered. Although I am not religious, somehow I still feel her spirit and love in that place and it gives me peace.

You did everything you could for your Mum, and were with her to the end - that is the very best we can do for anyone we love. Those of us who have walked the same tough path are with you, and although we don't have any simple answers, we know that you will get through this, and that your Mum would be so proud of you.

Sending you a hug,

Margaret x