I dread the day

My mum had vascular dementia and died aged 86 last September - she was diagnosed 3 years before but in reality the signs were there for the best part of 10 years. It is so difficult to watch someone you love disappear before your eyes and my heart goes out to you. Take heart as not all dementia journeys are the same and while mum could not remember our names, she knew we were her family and that she loved us. Stay strong and make the most of the time you have with her.

A close friend of mine was no longer recognised by her grandmother who suffered from dementia, but was able to establish a new relationship with her grandmother. One afternoon, when my friend, let's call her Annie, was visiting her gran in the nursing home, she asked her if it was all right to move gran's bible in order to place a tea cup where gran could reach it.

Her grandmother replied, " Yes, dear, I can't read it any more, anyhow".

Annie asked, "Shall I read you the gospel for today, gran?" as it was a Sunday, and gran had always been a churchgoer.

Gran said Please do, and Annie read the text. Afterwards, she asked if there were other texts gran wanted to have read. There were one or two, and afterwards gran asked, "Who are you, dear?" Annie said her name, but omitted "your granddaughter" as she knew that only confused matters. To cut a long story short Annie lived on in gran's memory as "that nice young girl who reads the bible to me when she visits"

I'm not suggesting you read the bible to your mother, who for all I know may well not want it or anything else read to her, but perhaps you can find something you and she can do together, so you, when the day comes, if it does, where she no longer recognises you, are "the kind lady who does such and such" when you visit.

My aunt's dear friend who also suffered form dementia recognised my aunt right up to the end, but thought the year was 1960 something instead of 2010, so asked after my grandmother and how my aunt's day at school had gone. They were both teachers, but had taught in different schools. They could chat about schools and how my aunt's mother, who was 70 in 1960 and died in 1964 was.

I know it is difficult, but communication can be possible.

You have been given some excellent advice here Nanny27 and I can't add very much. I lost my mum just before Christmas - she had vascular dementia for some years before her death. She was almost 91 ?❤️ I think the best advice I was ever given was to 'step into their world' and not try to force them into yours. Mum lived in very sheltered accommodation for the last 18 months of her life with an excellent care plan, we were so lucky. It was a difficult period but I met some of the most amazing people whom I would otherwise never have met? My DM and I enjoyed a very loving relationship and even on those occasions when she was confused about who I was, she always remembered in the end. I just went with whatever/whoever she thought I was? I miss her very much but she was brilliantly brave and always had a beaming smile - people were just drawn to her? I saw this poem just the other day - I found it very comforting, stay strong and loving Nanny

p.s. You may have to click on the poem to enlarge the type face

It’s so sad. I’m also dreading it as my mum has been diagnosed with Alzheimer’s and she is only 72 ??make the most of the time that she does know you. Also have a look on the internet at the song a minute man . It’s gobes you hope that there does remain a teeny bit of that person when they don’t remember you. I am just making the most of every minute. I’m only 52 and my mum will be lost to me very early I’m very very sad but all you can do is cherish what time you have. Thinking of you x

Google the lady who turned her dementia round with super foods. It was in the news a couple of weeks ago. She ate blueberries walnuts kale etc. It has made a huge difference to the point the Alzheimer’s association is looking into it her first name is Hazel I think

Please contact the Alzheimer's Society. They do brilliant work with people who are living with dementia and lots of places run Carer's courses where they give useful advice and information.

My own experience was not too bad, mum refused to admit she had a problem and insisted on her independence. She succumbed to carers popping in to check on her medications but that was it. If I have any advice its to keep being her daughter, spend time talking to her, take her out for tea and resist becoming her carer and cleaner because your relationship is the most important thing.

T
hat poem brought me to tears.

I am so sorry you are going through this,it is such a cruel illness.
I lost my husband Boxing Day 2017, he had early onset dementia which started in his late 50’s.
We still had a young family and it was so hard on them that Daddy was forgetting their names,ages etc and he kept mixing me up with old girlfriends which really hurt.
There are a few sites around that will offer support but best not to use google to find out what is happening as that just goes to extremes and often nothing like what is really happening.
Take care and all the very best but please remember when they say something mean or nasty,don’t take it to heart,it’s not really what they think of you but the illness

Goodness me, I've been taking a small handful of walnuts daily for years and had no idea of the potential added benefits. Nice to be doing something 'right' for a change. Serendipity indeed

There are many here who share your sadness. If and when your mum fails to recogmise you you will still recognise her, she is and always will be your mum, you just need to be there to hold her hand.
The poem on the first Page says it all. It brought me to tears.

I might well be at that stage soon - I do hope not.
But perhaps it's a natural stage of decline back to where we came from.

Fennel

It’s nit inevitable that she will forget who you are. It affects everybody differently.
For information, support and advice speak to an Admiral Nurse on the Admiral Nurse Dementia Helpline. They are specialist Dementia nurses. They are open Monday - Fri 09.00 to 21.00 ans Sat -Sun 09.00 to 17.00
If they are on another call, leave a message and they will call you back.
0800 888 6678

Some very moving comments here and plenty of helpful advice. My 94 year old mother has just been diagnosed with dementia, though it has been in the developing stages for some time. Luckily she has my wonderful 93 year old father to look after her, and a loving, extended family, and she's not too bad at the moment, though I do worry about the stress this is putting on dad. I suppose that, with people living longer, there will be more and more of us who are living with family members with dementia - often at the same time as we are caring for young grandchildren too. Thank you to all gransnetters for sharing these comments - especially Nanny27 who started the thread. It's good to share.

I can't really add to all these wonderful wise words, but would agree with the view that often moving to a Care Home specialising in dementia can reduce the trauma the family will inevitably be feeling. Visit often, your loved one may well have an awareness or feeling of comfort when you are present helping them to relax. Allow yourself to smile at silly things. My sister's close family agonised over her admission to a Care Home. One of many issues was her refusal to eat, despite many and varied nutritious foods being offered. I smiled at a photograph of her in the unfamiliar surroundings of the Home, lounging in an armchair tucking into a Huge packet of crisps! (She had been a dietician too!). She died last week. I have many 'smiley' memories.

Oh Nanny27, I know exactly how you feel, we bought a house to accommodate both my Mum and my Mun-in-law, in an annex, so they lived together , separate bedrooms, shared lounge/diner, and bath and shower room, with a shared kitchen. At this point I must point out that they were great friends, and got on so well together. 11years down the track, my Mum started to develope Vascular Dementia, which she was aware of as she got quite frustrated when unable to remember names, especially those of flowers, as she was an avid garden. The dreaded day came, when she popped along to our 'end' of the house and said straight to my face "I'm looking for 'Beverly' do you know where she is?" My stomach dropped, everything seemed quiet, then I replied "Mum, I'm Beverly", Her reply was, "No not you the Other one" she smiled sweetly and went back to her lounge, and left me completely dumbstruck. It still brings a tear to my eye when I think about it, but we must remember that our Mum's brains are not working quite right, and just smile, and always tell her you love her, Good luck?

Thank you Heather23, that is so moving, I will copy that and read it when ‘stuff’ overwhelms me.
My lovely husband was diagnosed with Vascular Dementia over a year ago, but on reflection it had been coming on long before that.
The Alzheimer’s Society are amazing, always there when needed, and can always point you in the right direction.
I have involved us both in as many groups /meetings as possible and it does help. I float the idea, which often meets with a negative response, but I always say, well let’s give it a try and if you don’t like it we don’t have to go/do it again.
Invariably he does enjoy it, particularly ‘Singing for the Brain’ so it’s good for us both.
Lots of help and support out there and the Alzheimer’s Society is an excellent starting point.

My mum was one hundred when she died and I remember the time, I was helping her into my sister's car and she turned and looked at me and said i don't know who you are. I had great difficulty driving home. Visiting her in care I found family photos very good tools for reminiscence., The other thing she could always do was sing hymns. No book all from memory.

My Dad had altzheimers and didn't remember who I was but honestly it didn't upset me. I used to chat to him about whatever he decided to talk about (some quite bizarre things sometimes) but he was happy so I was glad. If people tried to correct him on things he would get upset or agitated so I just went along with his train of thought. He was always happy to see me and my children despite usually not knowing who we were but we must have been familiar as he was content in our company. I think it's harder for those outside of the illness than it it is for the sufferer usually and I found accepting him ad he had become was less stressful for me and him. I did still talk about family, work, the house etc just daily stuff but never pressed him to remember too much. Its horrible but enjoy the times you have whether she tempers you or not xx

I am currently reading an excellent book, ‘Someone I Used To Know’ by Wendi Mitchell, about her life living with dementia. She explains very clearly what it is like to have dementia and how she copes with it in her very busy life.
It might help relatives or carers of people with dementia understand what is happening in the mind/brain of those with this cruel disease, what it is like for them, and how frightening and disorientating it can be for them.
for all those affected in any way by dementia.

Nanny27 I also dread the day my Dad doesn't know me. He has forgotten my name but knows he loves me and my family and tells us when we see him. We too worked hard to keep Dad in his home, and managed until a year ago when he began to wander during the night outdoors. We installed exit alarms, fall detector, you name it he had it. My Daughter and I saw him 2 to 3 times a day, prepared meals etc but the time came to search for a Care Home. I wasn't getting sleep as he went wandering several times a night and although I lived close, I was shattered. It is the hardest decision for any child to make but for us it was the best thing all round. My Dad loved the Home from the word go. We didn't realise how lonely he was at home, despite our visits. Loved the company, outings, entertainment and thrives there still. He has never mentioned his "home" and although I know not everyone has this positive a move, we are very thankful. We know he is Happy, well fed and cared for by lovely staff and we aim to see him at least every other day, usually more often. A long tale but my point is, keeping someone at home (who has advanced dementia) can quickly wear down their carer physically and mentally. As my Dad proves, moving to a good Care Home can enhance their lives and those who care for them. Sorry to ramble on !

Oh dear Nanny27.
First of all let me say that to hear the dreaded D word can be terrifying. People still tend immediately to think of drooling mindless "ga-ga" empty husks.
The truth is that at the amazing age of 93 your mum is almost certain to have other health conditions, particularly related to her heart - vascular dementia is caused by compromised blood flow within the brain and this is frequently linkef to conditions such as congestive cardiac failure. I'm willing to bet she's already on medicationfor some kind of heart problem!
The VaD has probably been developing over many years, what prompted your sis to get mum assessed? Was she becoming 'absent minded'? Having a diagnosis doesnt suddenly make things worse. It gives a reason for odd behaviours that you as a family were already aware of. And it means that she will be given appropriate treatment, most likely a statin and a daily aspirin, to keep her as well as possible.
Now let me be brutally honest. She's 93! She is not likely to live for a huge number of years more. Chances are she will unfortunately die before she reaches the stage of not knowing who you are.
My advice to you is - make the most of the time she has left. See her as often as you can. Facetime with her if you can't visit. Enjoy the precious moments you can spend with her. Have a giggle with her when she gets your name mixed up with your sister's or your daughter's or her next door neighbour from 50 years ago.
It doesn't matter!
The important thing is to carry on loving her as your mum, giving her hugs and holding her frail little hands, and stop worrying about things that may or may not happen in whatever short time she has left!
And feel lucky that you still have her around at her amazing age.
Please, just love her.

PS
Thanks to trooper7133 for mentioning Admiral Nurses in your post.
I didn't want to 'blow my own trumpet' but I AM an Admiral Nurse and I LOVE my job!
We are all highly skilled, highly qualified specialist nurses with a wealth of experience.....prior to this i was a Nurse Consultant in Dementia and I've worked for 25 years in dementia services. But I still recognise that the family carers are the REAL experts and I still learn from them all the time!
Please do phone the DementiaUK helpline if you need advice and support, there may be a community Admiral Nurse in your area or your sister's as well. But do bear in mind there are still only about 220 of us across the whole of the UK!
Dementia Uk relies on donations and bequests to help grow the numbers and we have acually increased from about 100 in the 5 years since I started.
Please consider remembering DementiaUK in your Will.
Thank you.

www.dementiauk.org

Heather, that is so moving and epitomizes the experience I had with my brother. Visitors would say that he didn't want to talk and so they would leave. I had difficulty getting them to understand that just being there was a help to him