Grief through the Dementia journey

[BeckyJan]

I have just been away for a few days with friends – lovely folk who understand my situation. They each have had problems but not with dementia.

Throughout the fun days I felt very sensitive, emotional and vulnerable, very hard to explain as I did enjoy their company and there was much fun.
Since my return I have tried to understand ‘me’ and its evident I am becoming a less tolerant and patient person than normal.

I feel certain that this is ‘grief’. Since the early days of my husband’s dementia there have been periods when through sheer sadness I have experienced similar feelings.
Those of us travelling this path are not restricted to grieving at the final passing, but throughout the whole journey.

Just sharing my thoughts.

 

[JackMac]

Hi Jan

I really do understand what you are saying. My mum is in the very early stages of dementia and I feel the 'grief' at times. I feel that I am slowly losing the person I know as mum.

Its good that your friends understand your situation so they can accept that you are feeling sensitive and emotional.

 

[Grannie G]

Dear Jan

It looks as if each stage brings it`s own depth of grief and when you have been on the long journey you and David have, it now seems to be taking it`s toll.

I`m sure you will never be intolerant, but I do feel priorities change, as feelings of vulnerability increase.

I hope you feel some benefit from your break, to help give you strength for what lies ahead.

Love xx

 

[gigi]

Hi Jan,

I feel certain that this is ‘grief’. Since the early days of my husband’s dementia there have been periods when through sheer sadness I have experienced similar feelings.
Those of us travelling this path are not restricted to grieving at the final passing, but throughout the whole journey

Your feelings could be mine.

We do grieve from the onset, I think, when we realise that the person we once knew is slipping away from us and life becomes a battle against dementia for our loved ones..but us too.

I'm glad your friends understood your situation..but perhaps they didn't quite understand your emotions...a different aspect entirely.

Love xx

 

[Nan2seven]

Dear Jan,

From John Suchet's "My Bonnie": "[The Admiral Nurse] explained to me ... that I was in mourning, going through the grieving process, for someone who was actually still physically there. It was a blinding revelation. Those dark moments when the tears suddenly come, when the memories come back that I can no longer share. It's a bereavement, and yet the person you are in mourning for is still there. How do you cope with that alone? The short answer, as I learned, is you cannot."

Some of us have an Admiral Nurse, some of us have good friends at TP.

I am sure you are not any less tolerant and patient than normal. I agree with Sylvia, though, that priorities change.

As long as there is love, from whomever, wherever and in whatever form, we will all get through this. (I long ago decided that love is my religion ....)

Love, Nan XXX

 

[Winnie Kjaer]

Thank you for this wonderful thread Backy Jan which I totally relate to. Thank you for understanding.

You have been able to put in to words what I failed to do.

My thoughts are with you all who can relate to this.

Love x

 

[Bristolbelle]

Thrice the pain....

I think it is absolutely true that you grieve for the person with dementia even before they pass away, then you grieve for thier passing, and finally fo the "what if's". Horrid, horrid, disease

 

[BeckyJan]

Thanks for all your replies:
When I said I was less tolerant and patient, I mean with myself and friends, not with David. I know I have been good with him, just as I was with my Father (Vasc.Dementia) and my Brother (MS).

Maybe this realisation has occurred since David's last big downturn, when I was expecting the worst yet again. It might be the aftermath of that.

 

[sad nell]

Jan nice to see you on Tp, i so agree with your last post, except your lack of tolerance, i found you to be such a lovely kind generous person, the fact that AD takes its toll on us carers far morethan we realize, take care of you in all this love Pam,

 

[BeckyJan]

Thanks Pam - good to see you here too.

Somehow I think you will have experienced some of the stuff I am talking about
Love

 

[sue38]

Hi Jan,

I have struggled with friends, who may have their own problems, but who I felt couldn't really understand what I was going through with my dad, so I didn't talk about it. I was gobsmacked to be accused of 'shutting them out'.

Since my dad died they ask 'how's your mum?'. But they never ask how I am. Tomorrow night there is a big party. I really haven't the patience to smile and pretend everything is fine. Or try to explain things... again.

Is this grief? Possibly. The feelings I have are similar to those I had before my dad died.

Please don't be hard on yourself.

 

[florence43]

Oh, I know that feeling. Funny because I had the discussion of "tolerance" only an hour ago with my husband. He's trying so hard to go through this with me, but as it was last year when my dad was given weeks to live, he can't possibly go through it with me, just stand by me as I go through it.

In summary, we're possibly facing mum entering a Nursing Home. Never actually thought we'd be doing this, but my eyes are finally open and I'm doing my best, as ever, to do the right thing for mum.

All of a sudden, soooooooooo many people are saying that ..yes, it probably is time...it's bound to happen...it's the right thing...blah blah blah.

None of these people have spent ANY time with mum in the past year, nor have they had to fight SS who wanted her shipped off a year ago (and were proved wrong), nor have they asked in detail every possible professional they could find what options mum has and neither have they any real idea of mum's wishes or have a loyalty to fight til the end to achieve them. They haven't spent hours and days researching alternatives, funding, loopholes, legal rights (mum's), laws, acts, benefits and choices. They haven't had to stay 3 steps ahead of the authorities to fight for mum's right to stay at home, nor have they had to educate and inform themselves so rapidly to get what she wants. All of this whilst slowly saying goodbye to their mother.

No, "...it probably is the right time...". THAT they can say.

So, being over-sensitive and a touch intolerant is a feeling I'm most familiar with!!!!!!!

Aaaaaaaaaggggggggggghhhhhhhhhhhhh! Wouldn't wish any of them to be in my position but there are a fair few proverbs out there to describe my sentiment!

Life, eh? It is what it is...!

Annie xxxx

 

[Margaret W]

I suppose, Jan, that is normal. It is as a result of a gradual subsuming of feelings over time. I Imagine that with your husband having Dementia you actually go throught the grieving process three times, not just twice. It is so sad. And each stage will have it's own characteristics, including anger, or annoyance, or irritation, or indeed anything else in the spectrum of human feelings.

I imagine you grieving when you chose a care home for David. I imagine a further period of grieving when he doesn't know who you are (I will have to read back on your threads to find out if that is the case).

It is a sad journey that many make. Often a lonely journey. We hope this website makes it less so. I can't add any more.

Best wishes

Margaret

 

[florence43]

Actually, touching on grief. I had THAT rather emotional conversation with my husband tonight too.

I burst into tears and said I thought I'd be OK, if mum left us. I've always tried to believe that I would rather she slipped away sooner instead of facing a future with no happy ending. I wanted her gone before her dignity was ripped from her anymore than it has been. I wouldn't wish what's ahead on anyone, so why would I want my own mum to endure it? I would rather she was spared.

But suddenly faced with the prospect of actually losing her, I don't know how I feel. I almost fooled myself into thinking it would be a relief, but it doesn't feel any different to when we were told we'd lose dad, and he was totally sharp and very much OK mentally. Then, we were losing a person we knew, and with mum, well, we lost her years ago, but it's suddenly changed.

I've been mourning my mum for so long and have felt the heavy weight of grief every time I miss having a mum. I almost imagined the real grief wouldn't hit so hard. I don't know what will happen and how I will feel, but tonight I feel so sad at the prospect of her dying and suddenly I feel an immense and strangling feeling of how very much I miss her. AND she's STILL here.

Oh, I'm just babbling. But your post made me think on both levels. Grieving and intolerance. That's been my life for a while now, and particularly today. I empathize with you in so many ways, and feel stupidly sorry for myself right now too.

Sending you an empathetic online-hug!

Annie xxx

 

[sigull]

Dont I know

Hi
As with you all, same feelings. Some days it's OK but others not so good

I do get a bit irritable on the day after a good day. But, bless her, I do know it's not my 'ol Ann but the person she has now become. I just relish the good days & try not to think of the outcome.... does anyone else here care for a loved one with Fronto-temporal dementia? We've just had a firm DZ so now trying to foresee what lies ahead.

Tony

 

[Grannie G]

Hello Tony

The diagnosis of Fronto Temporal Lobe Dementia seems to be on the increase as more and more people on TP are mentioning it. It is not my husband`s diagnosis but I`m sure there will be plenty of responses to your query, even if you have to wait till tomorrow.

 

[ROSEANN]

Hi Jan
I know just how you feel.
I have just come back from seeing `J` after one of the worst visits for a long while, and all the while he was going on I kept thinking to myself where has my husband gone and when will it all end.
I too have friends who I have no patience for mainly because during the last year they have been no where near us but now `J` is in hospital they want me to go out with them and act as though he is no longer with me.
I have cried buckets this week for various reasons but I do feel as if I am in a permament state of grief.
I do so hope you feel better soon Jan and send love to you and David.
Love Roseann xx

 

[BeckyJan]

Hello Rose:
Its good to hear from YOU but not the news of John. I know you have had a hard time although you have not posted much about it here.

I am seeing Grief as black notes in music - sometimes high and sometimes low but always there whilst watching and listening (and caring).

 

[lin1]

we all go thro hell with this disease sufferers and carers alike,

we grieve and continue grieving throughout.

I AMless tolerent (not with mum or dad)

I do not wish my mum to go to the bitter end of this disease.

I know how you all feel,im right there with you,

their is one thing I am very grateful for, and that is being able to look after mum at home, I cannot imagine what is like to place the person you love in a home, my heart goes out to you,