I dread the day

My friend works with this charity, and reports some marvellous results. I also remember singing in care homes, and seeing how animated some of the residents became.

www.playlistforlife.org.uk/what-is-playlist-for-life

She's done really well to get to 93 with few health problems. My sisters and I tried valiantly to look after our Dad in his own home after he developed mixed dementia (vascular + Alzheimer's). We signed him up with a careline company and he had a button on a wristband to press if he was in trouble, or had fallen etc. He usually forgot about it though?. We managed between the three of us for over a year, my youngest sister doing most of the care, with help from some lovely carers, as she lived just a few minutes walk from our old family home. By then Dad was falling too frequently. We found a lovely care home just a few miles from his home town, and he settled in there and was very happy for his remaining eight months. Happily, he never forgot his daughters, although he couldn't remember our names.

One of my grannies lived to be almost a hundred. She had no idea who any of us were, including her daughters, because none of us looked the way we were in her memory, which was daughters as young women, grandchildren as children. She did know us in photos of the time she could remember and would talk about us as we were then, rather than the rather elderly people sitting in front of her.

She was always pleased to have a visitor though and the best thing was just to live in the moment and talk about now. “Aren’t the daffodils lovely” “This is a good cake” rather than try to involve her in our own memories or plans. She enjoyed singing hymns (memory had not failed there) and often the visit was a bit of a singsong.

Even if you are not in her memory, you will be secure in her heart ?

For practical advice contact the Alzheimer's Society. I always find doing something very helpful.

There is a very good forum called Talking Point for people who are caring for someone living with dementia.

There came a point when my mother did not recognise me. I remember coming home and sitting in the bath weeping, as we had had a difficult relationship (as she had with my siblings) and I knew that we had missed the boat to sort that out.

But, after my weep, I just picked myself up and set about making sure she got the best care.

I think you have to wait and see - let yourself grieve when the time comes - in the meantime take one day at a time.

Thank you all so much for your responses. My sister works really hard to keep mum at home but the double incontinence and occasional aggression make life really hard for her.

Honestly, my gran was so much happier in her care home. Lots more going on to enjoy. Just a thought for your sister....

I am dealing with this now with my H, he is 82 and a recent stroke has tipped his Alzheimer's over into full dementia, he knows me and my S and my D when she had been here for a day.
Our worst problem is sleeping, he wanders the house most of the night, we just go along with it at the moment, taking shifts to be up. He has been referred to the Mental Health Team, I am waiting for their first contact.
We have carers in the morning to shower and dress.
If your sister is on her own it is a very heavy burden, I could not manage without my S living in with me.
Good luck with your mum.

* Granny27* you will be familiar with the saying “Sufficient unto the day is the evil thereof”.
Yes, this may well happen, it is wise to be prepared,, but when you know what is going on in her brain you will understand why.
She may not know you, but she may well still know that your presence makes her happy, so in her way she will still love you.
So try not to make yourself sad too soon, grieve if and when it comes to that, but do not let the time you have left with your mother be overshadowed by an unknown future.
By all means be prepared,
But, given her advanced age, who knows what may occur between now and then, it might never happen

Sorry, that should be Nanny27.

Nanny27 not recognising you is not inevitable.
My mum had the same diagnosis. She always recognised us though not always able to remember our names. Until her last week or so she would greet us with a smile and ask about other family members.

My mother had Alzheimer's for the last 5 years of her life. She didn't know me, but was always pleased to see me, and called me "Dorothy" which was her sister-in-law's name. I guess that maybe I resembled Dorothy in her mind. It never bothered me at all - she obviously thought I was a nice person so I rolled with the flow.

Your sister is doing a great job, but there comes a time when a care home is the answer. Living with aggression and incontinence is just too much for most people at home, whereas the staff in a care home are able to deal with these things with no problems. We were organising this for Mum when she suddenly passed away at home.

My mil had vascular dementia and for the last 6years she thought I was either her mum or her sister and also my husband , her son she thought was her husband. We just went along with it otherwise it was stressful to her and to us. We saw lots of people who argued these points with their family members , trying to force them to remember correctly . It was awful to listen to at times. Staff could not intervene either and tempers were often lost through sheer frustration.
Sometimes it is quite fun when they can remember the different eras we found it seemed to go in decades. We would listen to geT she told us and if we remembered things she had told us about it whilst well we could then join in the chat no matter how brief before she was in a different decade and remembering something else.
Sometimes she would surprise us and say her own name or our names and that always choked us .
It's such a sad time for anyone but can also be a good time too as long as you stay calm and stress free.

Expect things like being accused of moving things, I got accused of stealing her basket of costume jewellery and I found it in a different chest of drawers to normal. She accused the next door neighbour of stealing her drain pipe and trying to get in her house so he could live in it . She used to sit up at night expecting people to come in the door , we were ignored by the authorities on that one until we told them we found dressing shears and a carving knife in the seat she sat on while waiting for people in the middle of the night .
I'm not sure what you have already encountered with her dementia but I've told you these things just as examples of what we had from mil due to her dememtia. It's a mine field and you don't get any information of what to expect from anyone . We just got told to not take things personally.
I really feel for you going through this and can understand you dreading the day that she does not remember you .

Both my parents had dementia and towards the end my dad got mixed up with who I was, thinking I was his wife and my husband was my dad but he still knew he 'knew' me. My mum sadly lost her speech as well as being totally deaf so I never really knew if she remembered who I was in the last couple of years of her life (she was 92 when she passed away and had been in care the last 4 years) but her face would light up when she saw me and especially my granddaughters. I spent many hours sitting with her looking at old photos on my iPad. We were encouraged to make a memory box by the care home which I filled with things from her past and also a book about her life which the carers could read so they saw her as she used to be. It's a very sad time so my thoughts are with you.

It isn't inevitable, Nanny. Both my in-laws had vascular dementia. My FIL became non-verbal but he still smiled and seemed to enjoy our company.

My MIL mostly retained the ability to recognise us. Sometimes it would take a while for it to 'click' who we were but she would get there in the end.

We're currently going through an Alzheimer's journey with a friend and from my experience, I'd say that vascular dementia is less difficult to cope with than Alzheimer's.

Wrt care homes, my MIL was in a home for the last months of her life. It was close to one of her children and it made life much better all round. She was looked after 24/7 and the huge stress of caring was lifted from my sister-in-law so that quality time could be spent with MIL.

Thank you all I'm in tears reading this for the "loss" of not only my Mum but all your loved family who have been through this cruel condition.

My Mum had vascular dementia and didn't know who I was. She thought I was the nurse who put her eye drops in.

She had a photo of my Dad on her wall (they had been married for 70 years when he died) and I asked her if she knew who it was. She thought long and hard then asked "Is it my husband?" but she couldn't remember his name. She was surprised to be told she had five children too and had seemingly no memory of us at all. It is something I just had to accept, holding her hand and letting the conversation drift gently where it would.

She died at 93 (as did my Dad three years before her), "turning her face to the wall" as the saying goes, and just drifting gently away. It was a peaceful end. I still miss her.

I read this and felt your pain. My mum is on a home after being so very independent all her life she doesn't know us anymore but will smile sometimes as if she does. We have had a horrendous time over ten years as we saw signs in her eighties. She's now 91. Her heart is good but just that it keeps beating. Recently lost my mother in law at 95 in frail health but very aware of everything.she had the best last years. I could say many things to you but every situation is different. Take care and get some help as early as you can. Thinking of you today xx

It may be that that day never comes, so don’t worry yourself over something that isn’t a forgone conclusion. My mum died on her 89th birthday last month, having had a diagnosis of vascular dementia for 3 years but actually much longer than that. She knew she knew us until right to the end. I couldn’t swear she knew I was me, but she knew she knew me, if that makes sense. I too had had the dread that you have.

Nanny27 It's hard but you just have to go with the flow and accept it for what it is. It's a gradual process and some days will be easier than others. She hasn't forgotten you it's just that her brain has been damaged by this awful illness.

I lost my mom over the period of five years leading up to her death at the age of 91. I learnt to live in her reality otherwise she just got upset. In her head she went back to live in the place where she had clearly been the happiest in her life. So, when she asked me about her friends, local events etc I just told her that I'd seen them etc etc. She was then quite happy. Sometimes she knew me and sometimes she didn't. The care home was brilliant and the staff there became part of our family. I often left the care home in tears and then just gave myself a good talking to and got on with life.

In one way you will never lose her, even after she has moved on, because your own memories are intact. not a day goes by when I don't think of her or hear myself quoting her. Mom was a matriarch as well and so long as her great-grandchildren walk the planet she will not be forgotten.

It's not easy, but you will find a way through it. Accept all the support you are offered.

My dear MiL developed vascular dementia, and although there were a lot of things that affected her memory she always knew who we were. The hardest thing for her and us was that she developed dysphasia ...loss of normal speech pattern. A lot of conversations with her were complete gobbledegook and very much a guessing game, however she still knew us and her face lit up every time she saw us. Her sister on the other hand developed Alzheimer's and she was very aggressive and did,nt recognise us after a certain point, we found the Alzheimer's harder to deal with than the vascular dementia.

My heart goes out to you. I lost my mum to Alzheimer's after many years of watching her slowly decline. I always say that with dementia, you effectively "lose" your loved one twice - once as the disease robs them of everything which made them "them", and then again when they eventually pass away. It's almost like a role reversal too - you end up almost in more of a parent role to them. It's a horrible, cruel disease and very hard for relatives to deal with.

My mom also had Alzheimer's so I know what you mean. Remember you know her even if she doesn't remember you.

The person may lose their memory however they dont lose there feelings.

Hold her hand and show her feelings, music they love is a big thing for them too and they will interact with music.

I also used to read to mom, from poetry books and prose, The Bible, special passages and the like.

If your mom has some favourite stuff like that read with her. I used to and she responded with her feelings. I would sit and hold her hand as I read with her and I would feel her squeeze my hands at special passages even knew ones I hadn't read with her before.

Hope that helps

I understand your fear Nanny27 and do hope you and your sister can discuss the future care needs of your DM and find an acceptable solution. Sometimes resentment can build up between siblings when one is having to do far more than another (usually due to geography) but I am sure you are supporting your sister all you can and giving her a break whenever possible. After your Mum's days you and your sister will still have a relationship so it is essential to protect it as best you can. I came across this poem from Owen Darnell of Dementia Awareness and it really speaks to me (my Mum too is 93 and struggles with memory loss but has a long way to go on her dementia journey - if indeed she lives long enough to travel there). I send you my best wishes and strength for the times ahead:
"Do not ask me to Remember
Do not try to make me understand
Let me rest and know you're with me
Kiss my cheek and hold my hand
I'm confused beyond your concept
I am sad and sick and lost
All I know is that I need you to be with me
at all costs
Do not lose your patience with me
Do not scold or curse my cry
I can't help the way I'm acting
Can't be different, though I try
Just remember that I need you
That the best of me is gone
Please don't fail to stand beside me
Love me till my life is done"