Stages of Grief with Dementia

[BeckyJan]

I know this section is Dealing with Loss and usually covers those who have experienced the final loss. However, through the stages of dementia I feel we suffer major losses of our partners or loved ones. My husband is now at the very end stage and I look back at my feelings as we lost so much of our normal lives together.

There has been grief and despondency throughout the journey. I have lost the strong partner I had, the sharing of fun, laughter and sadness and a realm of emotions. Its staged bereavement, but not the final loss.

I miss the social events, the looks across the room, sharing decisions and lots more.

There must be many on TP who have experienced this. In sharing we may find ways of handling these losses and prepare ourselves for the final one.

 

[Margaret79]

Hi BeckyJan. I look after MIL so have no experience of what you are going through but just wanted to send you a hug. XXX

 

[Skye]

There has been grief and despondency throughout the journey. I have lost the strong partner I had, the sharing of fun, laughter and sadness and a realm of emotions. Its staged bereavement, but not the final loss.

I can relate to that, Jan. The gradual loss of the person you love is hard to bear. Even where there is no challenging behaviour, there is the gradual erosion of everything you value in the relationship. How people cope when there is agression to add to the mix, I just don't know.

Then the devastating blow when you have to hand over the care of your partner, the love of your life, to others because you can no longer cope. That's what knocked the stuffing out of me.

I can only imagine what you are going through, Jan. John's charge nurse told me it was a blessing that that final infection killed him, because it spared us both that end stage. I see his point, though I'm not sure I agree. But I do know that John was happy and smiling until a week before he died, and I have to focus on that.

I can't ease your pain, Jan, but I do feel for you.

Love,

 

[CaPattinson]

Dear Jan, you are right, I've heard the term 'the long goodbye' and that's what it is.

Although I don't really talk about it with dad, he still to this day, gets me 'confused' with mum, 3 and a half years later. He talks about me and about my brother as though he is talking to my mum. He'll say to me 'remember when ...' and its
something he shared with mum. We all know but I'll say it again, its so very very sad indeed.

Sorry, this is not what you mean I have just realised because it is happening now for you and for dad it, well mum is no longer here.

Its indescribably sad and heart breaking, many here will understand I'm sure.

I understand.

You are in my thoughts Jan, love to you xxx

 

[Scottie45]

Dear Jan

I am like Kassy its my mum who i care for,but the lady who lives with me is no longer my mum,she never speaks but if i ask her who she is to me she will say she is my aunt and if i ask her if she had any children she will say no.I was talking to someone today who,s hubby has Dementia and i was saying to her how hard it must be that the person who was her life is now not her life anymore,it must be really hard.Thinking of you take care Marian xx

 

[Izzy]

Jan I can really understand what you're saying even though Bill isn't as far down the road yet. We also lost mum bit by bit before she passed away. What a rotten, horrible disease. x

 

[Loopiloo]

You have said it all, Jan. I cannot find the words, but can totally relate to what you write. Can we ever find ways of handlng these losses.

My husband is not yet at the end stage of dementia as yours sadly is, although the rapid deterioration since November and hospitalization has been a shock. But there is no knowing when dementia may swiftly accelerate to the stage you are now experiencing with your husband. Terrible disease.

We gradually lose everything that meant everything to us as a couple, Staged bereavement is an apt description. And then as Hazel says the devastating blow when it comes to going into a care home. I wonder if I shall ever handle this, let alone the final loss you now face.

I can only echo Hazel's words, I cannot ease your pain, none of us can ease each other's pain, it is a solitary experience. But I also deeply feel for you.

Love
Loo xxx

 

[nicoise]

I have lost my mum recently, finally - with hindsight now, truthfully I had lost her already. The lady that died was not the mum that I already had started grieving for, so for me the shock was less than with my dad who had been physically unwell but mentally intact - his loss had more impact in the gaping hole it left because of the loss of his vitality. But of course this is my mum... and that's a bad one.

But Mum's death has also brought an element of relief that for her and myself that the suffering is over. I do not miss the worry, the anxiety, the fear - but that unconditional loving relationship between us, that I do miss terribly - I was lucky to have had that.

And now I'm doing the paperwork, oddly I still feel as though I'm looking after her, making sure it's all straight, in her best interests - I still have that connection with her. I can still talk about her, look at her handwriting, read her name, go into her house, touch her things, smell her scent. Once this task is over, that will cease. And I think then it will really hit me....

But this is not my spouse - a very different relationship, so I do appreciate that has a very wide reaching impact on your whole life. I am fortunate that I do still have that part of my life to fill the gap and keep me looking forwards.

We all have our losses of different types - and I find it helps me keep things in perspective reading here - and to count my blessings. I feel for you Jan, and thank you for your honest and open post - you are a brave person to address your feelings so openly, and it helps me too.

Best wishes xxx

 

[Lost Soul]

Jan, may be this staged bereavement in some way is preparing you for the worst , let you adjust yourself step by step ?
My husband with VD declined very rapidly . I couldn't cope with it and got very depressed .
I found ups and downs of VD very hard to deal with. One night he would shout at me to get out of the house , his wife (?) was due back any minute as he thought I was an intruder . Next day he would be telling me that I would never know how much he loved me. Then refused to go to bed because he thought I was a man (???).
There is never an easy way with dementia, is it ? Just a different one.
Now he is not here and I miss so many things but most of all our togetherness. It was always us and now it's only me. I know that in his world I was always number one as he was in mine. I miss that too.

 

[Saffie]

Oh Jan, I do so know what you mean though my husband is not as far down the road as your's is. I think it is a death by degrees - of the man he was, and so heartbreaking.

But yes, I think you are right, it is a kind of preparation for the final parting though there is much anguish and despair to be gone through before we arrive at that point.

But Jan, we are so fortunate to have the support of all these lovely TPers. So many here have already passed through this and have experienced the ultimate loss and have borne it with such fortitude, they are an inspiration to us all. I only hope I can emulate them when my turn comes. love X

 

[BeckyJan]

Saffie you are right and thats why I started this Thread on 'Dealing with Loss'.
Others tell me I am strong but no so sure about that .

I hoped we could talk about how we cope with the 'staged loss' and then obviously the final one.

My ways of coping may not be the same as others but its good to learn from each other.

 

[Saffie]

Jan, speaking for myself, I don't look ahead at all. I just live from day to day. As Dave has only been in his nursing home for nearly 6 weeks, it's been a case of coming to terms with this at present. Emotionally it is exhausting but by concentrating on the practical aspects of it, it somehow allow emotions to be kept in check. The guilt I feel is dreadful but I have to live with that.What I can do is make sure Dave's care is as close to what he would want as I can get it. This is not easily done and there are so may steps backwards but it keeps the mind, and heart focused.

I am so glad that I have this site to allow me to speak as I feel. To nobody else do I do this . Not that people are unsympathetic but nobody can possible understand what this half -life is like. It is our Golden wedding anniversary in just over a fortnight's time and I am dreading it. I have already received a card from an old friend, who was my bridesmaid. A year ago we could have celebrated as Dave would still know what it meant. Now, there is no chance of that and it simply accentuates all that is lost forever.
Sorry, must go, getting a bit upset now. just really wanted to say - one step at a time. X

 

[creativesarah]

lots of support such heartfelt posts today

glad you liked the video Beckyjan

 

[susiesue]

Hi Jan

I understand exactly what you are saying and unfortunately now that David has gone I find it very hard to think back to the 'good' times - all I can remember now is the last few years. I agree with you about the things you miss - me too!

Like Skye's John, we were spared the End Stage with David, also due to an infection and then Pneumonia.

Am thinking of you at this terribly sad time and sending love.

 

[Canadian Joanne]

My mother was in a retirement home for 2 years and has been in a nursing home for over 8 years. What was once a beautiful, intelligent, reserved woman with a hidden sense of humour is a shell.

Nowadays I seem to cope well. I rarely have crying spells. My eyes well up the odd time but that's it. I cope by living in the minute and not thinking about the future. The future looks to be very long and drawn out and I don't want to think about it. While my mother is still animated, making her noises, laughing, smiling and thumping her chair tray, I am not going to anticipate anything.

 

[bunnies]

We all know, you lose the person along the way, in short steps they are taken away from you. What Canadian Joanne expressed, though, describes how with each step, while the person you know disappears, something comes in its place. Although I lost my dear aunt with each downturn, and she didn't walk, or speak, or recognise me, or feed herself, what replaced that person was someone who always lived in the moment, whose kind nature shone through her confusion, who would sometimes respond so innocently and naturally to a picture, or a word, that I loved that person just as much.

So when she died just a month ago, I didn't grieve for my aunt like others who hadn't known her during her illness, but I grieved for the loss of the simple, honest relationship I had with the person she became. I am finding it very hard to adjust to this loss. I have lost parents and other relatives through cancer, and through their illnesses they sadly all became just ill versions of their real selves, and then died. In my aunt's case I think the dementia transformed her into someone else - not always someone who was easy to deal with, but someone who had a lot to teach me about what is important in life.

So I don't feel this bereavement is calmer than others I have experienced just because I started to say goodbye long ago.

 

[Janet08]

Reply to Stages of Grief with Dementia

I know this section is Dealing with Loss and usually covers those who have experienced the final loss. However, through the stages of dementia I feel we suffer major losses of our partners or loved ones. My husband is now at the very end stage and I look back at my feelings as we lost so much of our normal lives together.

There has been grief and despondency throughout the journey. I have lost the strong partner I had, the sharing of fun, laughter and sadness and a realm of emotions. Its staged bereavement, but not the final loss.

I miss the social events, the looks across the room, sharing decisions and lots more.

There must be many on TP who have experienced this. In sharing we may find ways of handling these losses and prepare ourselves for the final one.

This is my first time on Talking Point; so moving to read what others have/are experiencing. The thread which took my eye the most is from BeckyJan, when she writes so well on how hard the stages of grief are, loosing someone slowly from dementia is painfull and cruel. BeckyJan's feelings really made me want to reply as my mother has dementia. Im an only child and lately really feel the pain of seeing mum go through the bad days, good days, highs and lows, it's like an emotional rollercoaster.

The thoughts I have about not wanting to loose her, as she feels like my main purpose in life at the moment, but not wanting to carry on like this restle through my mind almost daily. The exhaustion, dilemas, decision making which happen when coping alone, with no brothers and sisters to share it with makes it so hard - at times it consumes me. Lately I've been thinking how much more and for how much longer do we both have to cope with these highs and lows - then I think when she "is gone" how will I cope without her. I love her more than I've ever loved anyone, probably always will.

Mum is in a care home now, when I arrive to visit (almost daily) I think how will it be today? Apparently it's called anticipatory grief, hadn't heard of it, but recognise the symptoms in myself. I find BeckyJan's last sentence very moving and empowering - all the best to you BeckyJan and your husband and all who are currently at this stage with caring for a loved one with dementia. We have to stay strong for them and for ourselves.

 

[BeckyJan]

Janet, its good to see you posting on TP although I am sorry it is to do with grief and dementia.

Along with other members who have has shared this Thread I hope it has helped to bring to the fore those feelings of grief through the different stages. This should help us understand ourselves and others experiencing the same.

 

[Margaret W]

Hi Jan

I've not been on here for a while. Taking a break from dementia.

Sorry to hear that David has deteriorated. You have looked after him and looked out for him so much. You can only take comfort in the fact that you have done so well for him, fought battles for him - and won in style, as I recall - and been there for him throughout. I can't pretend to have been through what you have been through. With me it was my mum, and she died suddenly, prematurely, and was therefore spared the worst aspects of this illness.

You must remember the good times with David. You clearly had many, and they are to be treasured like gold. I wish you every good wish. I don't even know if we met in Whaley, but I am here whenever you need to talk. Send me a pm if you wish, but you probably have my email.

Love

Margaret

 

[christine_batch]

I always say I lost my husband from the time he was diagnoised.

Alzheimer's affected our family life. Over the years it had removed Peter mentally from us who loved him. I am still so very angry that our future changed so much. Peter was not there for our youngest son's wedding, celebrating our beautiful Grandaughter's 18th.
Nor for the birth of our youngest Grandson.

Tomorrow it is my young brother's funeral and Peter is not here to give me comfort.

When Peter's passed away, the mourning started all over again. No more kisses, enjoying each other's company, looking at his beautiful blue eyes.

I know I carry in my heart the love we shared and that is always there.

Sad is my heart that loves you,
Silent my tears that fall,
Living my life without you,
Is the hardest thing of all.

Christine