A deeper bereavement

I remember my RS teacher at school announcing at the start of one lesson, she wasn't worried about getting old as she wouldn't know what was happening. Along those lines, we can only hope that dementia/Alzheimer'd/PD are less distressing for those who have them than for those 'left behind'

This is so true and not usually mentioned (not just for Alzheimers, other terminal illness as well). When my DH died, it was mostly a relief as the last few months when he was ill and I was carer were so stressful and exhausting.
I feel that, although it is a terrible shock when someone has a heart attack and dies suddenly, that is much better than a lingering illness where the person is no longer the same.

Maw just ??and hugs x

There are two members of my extended family who suffer with extremely severe mental illness. They are now in their mid forties and are unrecognizable from the delightful young men they once were. There will be a glimpse every now and again of their true identities and then it's gone, lost in a morass of paranoia and delusion. I was particularly close to one of them and seeing him lose himself has been especially hard as he was so gentle and kind - a simple soul.

OldMeg when you are first diagnosed with dementia, it is already too late! I went in with my M&D for her first diagnoses at the hospital, when the doctor said those words, I thought my mum would wail, but she didn't react! When we came out my dad was angry that my mum had just been written off, with no medication or physio or anything.

My daughter always says to me if you get it mum, I'll top myself when I get to that age I know my mum, without doubt, would have wanted to go after the first diagnoses, but as I said, it was already too late! She was 80 when first diagnosed, so I wish I could have told her, when she was 50 and worrying terribly about getting it, that she had 30 more healthy, carefree years to go. But having said all that, my mum was happy in the care home, enjoyed the social occasions that they had often. I don't think anyone would want to live with dementia, but it creeps up without one knowing

wot no the spirit doesn't leave the body till you take your last breath.

My mother had Lewy Body Disease (another form of dementia allied to PD) and she had not recognised me for ages before she died. Her life was a misery - I did not shed a tear when she died (it was a huge relief), but had done so about a year earlier when for me she had really left us.

It was the same when my mum actually died. I wonder if their spirit leaves ages before the body. Anyway, it's so sad.

I agree Maw when mum died I didn't feel the over whelming loss I though I would as I felt I 'd "lost" her 2 yrs before

I lost my parents when they were relatively young, so don’t know what the future holds. But if I am diagnosed with any of the dementias then I’ll make sure I take a quick way out in the early stages over being as you describe BB.

My Nan had vascular dementia for the last four or five years of her life she lived with me for the last three it was pitiful she had been a strong hardworking caring lady Her daughter, my mum started with Alzheimer’s in her mid to late 70 s by 83 we had no choice but to find a carehome as she was a danger to herself and Dad She had seven years in the home getting worse and worse the tears the tempers the loss of everything bit by bit She couldn’t hear, then got cateracts she started talking gobbledegook then stopped altogether she didn’t recognise us she would swear cry throw things or she would be pitiful she couldn’t walk her legs became locked in a crossed position as she sat like that so much she was incontinent then doubly incontinent my dad died the day before their 70th wedding anniversary Mum died six months later I had to sign for her not to be revived I had lost my Mum years before but I felt the same bereavement the same sorrow the same guilt when it actually happened
And I m next in line and only a few years younger

It is so sad. An awful disease.
and hugs to all who have, and are,dealing with this.

My heart goes out to everyone here who is dealing/has dealt with this problem. One of my aunts had dementia for 6 years before she died. Lucky for me, I didn't have to take care of her - her dds did that - but I did visit, and, imo, it's as if she died twice -once when her mind "disappeared" and again when she her body finally gave out. It sounds awful, but there wasn't too much grief expressed when she passed because we had already mourned her loss, particularly her dds.

annsixty (((hugs)))

Terribly sad thread. My thoughts are with you all who have had to experience this, in what ever form.

My dear mum had vascular dementia for 6yrs. It was her biggest dread from when she was about 50yrs, as her mother had senile dementia. But my mother was as sweet and gentle as she had always been, just now quite like a child, couldn't speak, but could sing like a nightingale!
She continued to live with my dad for two years, but it proved too much for him, so she went into a care home, I cried brokenheartedly that day.
My dad died before a year had gone, he died of a broken heart, they had been together 65yrs! I visited my mum most days, and would bring her home for the weekend, but had to take her back to sleep, as it wasn't safe for her not to. My mum definitely still knew me, but my sister that visited once a week and my brother once every 3 months & 15mins at Xmas not. My sister & I was called to her bedside 3 times to say goodbye, so when she did go, we were prepared, unlike with my dad which was the biggest shock of my life!

For all

It is not just dementia. My sister received severe head injuries in a road accident. After two operations on her brain the doctors told my DPs, that if she survived she would be very severely mentally disabled, possibly in a vegetative state.

My mother told me that she had could never have envisaged a situation where she would pray for the death of one of her children but because the alternative, if she lived, would be so terrible, present in body but not in mind, that is what she did.

My sister died, but there are many families with members, often young, who because of head injuries, are as lost to their families as someone with dementia.

Similar situation here - not Alzheimers, but a relationship under stress from the mental effects of PD, which can cause paranoid delusions. It is sad to think my life's partner is gripped by these false beliefs about me. But some of the time the old person is there, so I hang on to that.

My MIL had Alzheimer's for 15 years before she died and was lost to us for the last 10 when she could no longer communicate in any way.

For the last few years, we would sometimes say "She should go now" to each other, but yet when she died this year I was surprised at how much it affected me, and even more so, her son (my husband). After all, we had had many years to get used to the idea and had discussed it many times.

Then I realised that we finally had permission to mourn the person lost to us all those years ago, until then we had been, sort of "on hold".

I was so proud of my husband at the funeral because in delivering the eulogy, he brought her back to life with words, as she used to be.

It must be an incredibly heavy load to shoulder. I take my hat off (if I had one on) to everyone who is affected, particularly carers.

I am so deeply sorry for all who have family members with this cruel illness

Yes my DH has lost his dear mother to dementia.
He is her only child
She idolised him, now she screams and shouts at him

I also lost my dear father to vascular dementia years before he died.
My Darling grandmother suffered with Alzheimer's disease.

We both live in fear that this will be one or both us one day.
We do not want our children to have to deal with what have dealt with and are still dealing with.
It is a cruel disease that causes the families untold anguish

for all who have lost the loved one that they are caring for.

Annsixty my heart goes out to you.

Actually to be as frank as I can, you no longer love this person, you loved the person you knew before but in my case that is dead now.
You are a carer for someone you don't know any more.

I agree Maw with any form of dementia, the person with whom you shared all your memories, hopes and dreams is in effect gone and you are with someone who just lives with you. Of course you continue to love them but in a different way and its hard not getting anything in return,
My sympathy to all bereaved GN posters and those who care for a loved one with any degenerative disease.

I have no direct experience of this but it sounds so terrible. I cannot imagine watching a loved one turn into a different person. I watched my sister deteriorate with Ataxia but she was always my sister, not a different person.

I know Christmas will be difficult for you Maw, so many of us are facing the first one without our loved one. My DS always came to us for Christmas and there will be a big hole in our hearts. A friend who has lost her husband this year has bought a cushion from M & S with his initial on which lights up. She is putting it on a chair so she can feel his presence and keep him in the family.

I pray we all find a way to cope.

You’re right, there are indeed many kinds of losses maw. Some are harder for others to see. A neighbour told me recently he said goodbye to his wife the first time she failed to recognise him. He loves and visits her daily but has no expectation of real contact, he is overjoyed when she smiles at him. His sadness and honesty made me cry. There will be so many other people here managing losses. Sending hugs to all who are grieving.