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Dementia and Alzheimer's

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Original poster

The saddest thing happened today

22 replies

TheGateauIsInTheChateau · 08/09/2018 23:17

I’m not posting for advice, I just need to get this off my chest.

My MIL has no idea that her son is her son. We went out with them today, bought her a card for her Birthday. Addressed to “Mum” she stared at it and said “Mum, who’s Mum?” We gently explained she was DH’s mum but she looked so blank and confused, as though we were having her on. I looked over a little later and she had tears in her eyes. She’d made comments about being called Nanny by DD but we though perhaps there was another name she wanted to be called.

When we collected her and FIL today she’d been looking for a photo of “a little boy on a bike, it looked just like (our daughter)” the boy on the bike is my DH of course.

A few years ago she stopped being able to remember his birthday.
Then last year at Christmas their card was signed off with their names, not mum and dad.
Then at birthdays she’s addressed the cards with her name at the top rather than at the bottom.
When DH called to say we’d had the baby he said she sounded vacant and non plussed.

We gave them dd’s birth announcement card and she asked why the baby had our surname - she couldn’t remember her previous marriage.... and it would seem having a baby boy in that previous marriage that she absolutely doted on and loved with all her heart.

I feel desperately sad for DH. I wish there was more I could do. It’s so sad to think we have to watch her deteriorate now... she was always so lovely and sharp as a tack, I feel absolutely saddened to the core.

OP posts:

BookMeOnTheSudExpress · 08/09/2018 23:23

There is an ongoing chat/support thread called Caring For elderly parents, I don't post so often on there now, my Mum is now in a home and has no clue whatsoever who I am- odd though it sounds, that is actually better than what it was like when her memory came in fits and starts.
That thread was a lifeline for me a couple of years ago though- when my Mum was in the position it sounds like your MIL is in now.

ProudThrilledHappy · 08/09/2018 23:26

I’m so sorry for you and your DH. Dementia is a cruel and difficult disease.

My grandmother suffered for several years before she passed, many times she begged us to take her “home” to her parents. She didn’t know who any of us were and no matter what we told her she often looked scared, We could only imagine the stress she must have felt believing she was trapped in a strange house and just wanting to go home.
There has been a lot of research that using music can help to maintain their memory. We also got a digital photo frame and loaded lots of photos of my grandmother with us and other family and left it near her chair so the photos were on a cycle in front of her, we felt it helped for her to see herself with us.
It is a tough thing to go through

sirmione16 · 08/09/2018 23:27

I'm so sorry your family are going through this, I can't even begin to imagine how hard it must be.

Keep the memories of her in your heart and remind and talk to your children of the woman she used to be before this awful disease took over as she sounds a loving mother and grandmother.

Best wishes

Prestonsflowers · 08/09/2018 23:27

I’m so sorry that this is happening to your family.
It must be horrendous

MrsMozart · 08/09/2018 23:28

I'm so sorry.

confusedmomm · 08/09/2018 23:30

So sorry! My mother in law was diagnosed two years ago. She still functions fine but she has forgotten how to write / count money eg when paying for something
We are aware will be a downhill from here.

LoniceraJaponica · 08/09/2018 23:34

It's rubbish isn't it. Sadly, this weekend we have had to move MIL into residential care as she is no longer capable of looking after herself. SIL is in bits because MIL was so aggressive about it. Obviously she didn't want to go, but she has an utterly miserable existence living at home on her own. She shouted and swore at SIL and told her she hated her.

FadedRed · 08/09/2018 23:41

Dementia is a truly awful disease. You 'lose' the person twice. Losing your mother once is bad enough.

Original poster

TheGateauIsInTheChateau · 09/09/2018 07:20

Thank you all so much. I will check out the thread.

It’s such a cruel disease, so sad to read everyone’s stories and see the person you love slipping away. 😿

OP posts:

Knitjob · 09/09/2018 07:27

Dementia is awful. We have responsibility for my aunt who is quite far down the road, usually doesn't recognise us. But last time I was in, as I was leaving she grabbed my arm, said my name and said "I wasn't always like this you know. I used to know my own name". It was so sad. The whole thing is so sad. I'm sorry op x

stellabird · 09/09/2018 07:31

It's sad when they don't know who you are. My DM thought I was her sister - once I got used to it I was OK . She liked her sister so at least it was good to know that I was seen as a nice person in her thoughts.

In a way I was glad when she reached that stage - she was so terribly sad and confused in the "middle stages" when the dementia came and went. Once she was over the "bump" and fully consumed by it, somehow she was more peaceful. That was the only way I was able to deal with it, to know that she wasn't sad any more.

Best wishes to you and your family.

brizzledrizzle · 09/09/2018 07:39

I'm so sorry. It is painful, I went to visit my father and he asked who I was, when I said my name he says who's that. It hurt to the bone.
Do join the thread for support.

pombal · 09/09/2018 07:40

I always remember my grandmother sitting by the door of the nursing home coat on, bag on her lap waiting to be picked up by my grandfather who had died 20 years earlier.

It’s heartbreaking.

I found that trying to ‘orientate’ her to what was going on, who we were, only distressed her further.

In the end I just sat with her and had a chat like we were strangers at a bus stop

Yogagirl123 · 09/09/2018 07:42

so sorry OP, it’s a very cruel, heartbreaking disease, I know.

Dermymc · 09/09/2018 07:51

Oh OP huge hugs. It's such a cruel disease.
One of the best pieces of advice we received was "just smile and nod at everything, anything you say won't sink in and will distress them further".

Sending you strength for the months to come.

BikeRunSki · 09/09/2018 08:00

We’ve been there.,DH’s grandma had dementia for a few years before she died, and eventually moved into a home. We used to go and see her on Sunday afternoons. DH looks just like his grandad did at that age. Grandma had no recollection of having children, grandchildren, great grandchildren... but still adored her deceased husband. We stopped trying to explain to her who we were after while, and she just thought she’d had a lovely afternoon with Fred. God knows who she thought I was!!

ShimmeringIce · 09/09/2018 08:04

knitjob your post particularly stung
DM is in the middle stages (I think). It’s so hard to tell - I suspect she’s been covering it up for a long time and now doesn’t talk much at all. She can interact with her young DGC fairly normally but will ask very odd questions from time to time and seems uncomfortable being away from home or with a lot of people.
I have no idea how to talk to her

Eve · 09/09/2018 08:06

So sorry,

My dad had this as did all 11 of his siblings (Irish farming family) it’s very hard for all the family.

Original poster

TheGateauIsInTheChateau · 09/09/2018 08:10

Actually if anyone who has been through this can advise... on the birthday card/Christmas card thing should we just buy a generic card instead as being called Mum/Nanny when you don’t know you are one is confusing and distressing? Difficult for us but even harder for her I think...

OP posts:

chrissie28 · 09/09/2018 16:23

I run a group for carers and families and people with dementia - these kind of questions come up again and again - we have over 800 members so usually someone has had direct experience and can help. Please feel free to join us www.facebook.com/groups/dementiaconnection/

MrBirlingsAwfulWife · 27/09/2018 22:46

TheGateau it's heartbreaking to read. I understand completely. Both my parents have advanced dementia. My Mum has had it for 14 years so it has been a very unwelcome guest in our family for a long time.

With birthdays, we decided a couple of years ago to stop celebrating Mum's birthday. She got so confused and stressed by not understanding that it seemed cruel to persist. The loss was ours not hers but it does hurt.

I think your idea of giving generic cards is a good one. Maybe even not Happy Birthday? Perhaps a lovely card that says that you love her. Less to be confused about? What a lovely DIL you are.

LucyInTheParkWithDragons · 27/09/2018 22:53

My fabulous grandad was the same.

I had to stop calling him grandad as it confused him (I don't think it worried him, he just couldn't place me), so I used his name instead. I think he always recognised me as a nice person who meant something to him, even if he didn't quite place me.

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