I dread the day

Hiya Nanny27
My wife has been suffering from Alzheimers for 13 yeas now. For the first eight years I cared for her at home but after a spell in hospital with a pulmonary embolism I was advised by her hospital doctor to consider a care home. I did this very reluctantly but she settled there very well and having professional care on hand 24/7 was wonderful.
She has now reached a point where she doesn't speak at all but there's still a spark of recognition in her eyes and when I cuddle she snuggles
If there is a branch of Carers Careline near to you then contact them. They have a mine of information to hand and are a source of constant support.
Other than that I would recommend the poem published on the previous page by Heather23 - it says it all.
Best wishes and may God bless you and you family - as time progresses I'm sure that you'll all find the inner strength to deal with whatever comes. It will be a gradual process that won't just happen overnight and our love for our dear ones will always prevail over adversity.

My gran had this nd new me til the end, she thought I was still a lot younger, like asking if I wanted children when she had 3 nearly adult grandchildren and she thought my husband was my uncle.

My mum is 97 and has had vascular dementia for about 5 years now. She went into care with my father who is a year younger about 18 months ago and has thrived ever since. She knows who I am and sometimes even my name but seeing me makes her happy. My dad, on the other hand, is mentally capable but severely physically handicapped and cannot now walk or stand alone. He needs help with everything. He is much more unhappy than my mother as he is aware of what is going on around him and is finding life very difficult.

Hi,
Isn't dementia a dreadful illness, it has such devestating impact not only on the person who has it, but also their family.

It alters the life long relationship between the sufferer and individuals who know them as well as family or friends. It is this change in the relationship that family particularly find so hard to deal with. It's the loss of one person and attempting to get to understand someone who seems to be a different person. A devastating and awful disease.

There are differences in the over 100 types of dementia's and some dementia's spare the family and the sufferer the darkness of loss of recognition. There are of course other memory losses, but recognition is maintained. Of course Alzheimers is the main dementia where loss of recognition of people and loved ones is predominant.

You might find it useful to read up on vascular dementia. It may be that you and your loved one are spared this dreadful loss of recognition. Try to find out as much as you can about this dementia. knowledge is power and if you know for sure what you must face it might be helpful if not exact to know what to expect and what you are going to have to face.

Having just gone through this awful situation for over 8 years
my sister has cared for and at the end nursed her husband with alzheimers at home.

We gave her the best emotional support we could during that time. Her husband died just before Christmas and it was such a release for him, her and their family. She has come out the other side, and is now recovering emotionally and physically with the love and attention of her family.

Interestingly she tells me that for her once her husband started not to recognise her and her children, which was scary for him as upsetting for them, they put their upset on one side and concentrated on reassuring him, that they would look after him although his wife, and children as far as he was concerned had gone, he just did not recognise them.

So the hurt moves into love and care for the sufferer, they are still your loved one, although they think you are a stranger, you know your not and that is where the unconditional love comes in. My sister tells me it's all about not putting yourself at the centre of the problem and putting the sufferer first. She as been so unselfish and I admire her so much. Such love!

I sincerely wish you all the best during this test of love, for that is what I think dementia seems to be.

There is also a lot of help out there, although my sister found that at the end of the day when the hours visit to make a memory book or yet another 'chat' for the 'carer' is over, she was left with the other 23 hours seven days a week to deal with the endless constant questions about the same thing, or the need to keep opening and shutting the blinds, or leaving the oven on, or putting things in the wrong place, like bread in the rubbish bin instead of the bread bin, endless small things that on a one to one basis twenty four hours a day becomes wearing. Putting the heating on, lights on and off, not being able to sleep and wandering about, agitation, it must be so dreadful for the sufferer. On her worst days my sister said she had to remind herself that what she was going through was nothing compared to what her husband was going through, nothing.

As the illness in Alzheimers progresses, lots of physical problems start as well, and of course there are dreadful hallucinations. All in all a dreadful, dreadful disease, of which recognition becomes insignificant once the hurt of initial lack of recognition has happened.

We have to start to get the message over that dementia is about loss of memory yes, but it is not always about loss of recognition. It is also a lot more, a lot more than about memory, it is hugely emotional, and gradually physical and must be very scary for the sufferer. We must not hide from the facts, it might be then that the type of help offered will be more useful.

Much as I admire the Alzheimer's Society, my sister found that the type of help on offer was of no help at all in the bigger picture.

Once social services entered the situation, which was only when she could not manage to shower him on her own, and he would resist being showered because his wife wasn't there he thought. This was a daily hurt she had to face, but she had to persuade and encourage and finally get him into the shower. Just one of the many ordinary daily tasks that became ordeals for both of them.

From what you say hopefully with vascular dementia you will not have to face these awful things. But ask for help. I hope that you now see that the lack of recognition is not always the case, but if it is really in the scheme of the whole illness and the needs of the sufferer and the demands on the family it becomes the least of your concerns.

Best wishes to you, your family and of course you Mum.

I think you meant "bear" both times

Sorry I meant bare. Co fusion must be catching ?

What wonderful supportive people you all are. It's wonderful to feel "less alone" with this. I have to add that becoming the parent to my mum is hard to bear. A successful business woman who now needs me to pull her pants up for her; that's quite hard to bare.

Dear Nanny27, my heart goes out to you. My mum had a diagnosis of vascular dementia too. Different to you as my sister and I had a rocky relationship with her as she had always been quite verbally aggressive towards us both. She managed at home for a while with my sister living close by and, eventually, carers coming in a couple of times a day, but the falls got more frequent and my poor sister was phoned at all times of the day & night as mum's understanding of time disappeared.

Eventually, after several more serious falls, she was admitted to hospital. They only agreed to discharge her to respite care so that she could be assessed - unfortunately she was so rude to assessment staff from a couple of local homes choice was limited as they refused to take her. She eventually decided to stay at the care home and never returned home, we lost her a few months ago.

But we made sure we never got to the point of non recognition. Whenever we saw her we would greet her with something like "Hello Mum, it's MagicWand" so she was never put in the position of having to try and remember us; less frequent visitors were always introduced properly. We had a photo montage of all family members hung on her wall and referred to it - often. We hung a calendar and always 'signed in' whenever we visited, as she did forget people had been to see her so we were able to refer to it to remind her. We found out lots from the Admiral Nurses website and Dementia UK and the wonderful staff at the home.

What I want to finish with is a more positive message. Accepting that 'what you see is what you get' when you go to see her (especially as it's 3hrs away) will make it easier; talk to her about her childhood if that's 'where she is' - I found out lots of things about my mum's early life that I would never have known about otherwise. As others have said, don't try to contradict her or put her right about things - my 120yr old gran was still alive to mum and that's the way we let it stay! I know I was lucky, my mum became a gentler, kinder person and my relationship with her in her last few years was certainly the best I'd ever had with her as an adult. It won't be the same, but it needn't be the dire picture that is sometimes painted - I wish you and your sister all the very best.

My Dad had Vascular Dementia my suggestions are

Make a memory book with your Mum - label everything - she'll enjoy looking at it and reminiscing together (recent memories fade first so start as far back as you can)

Enjoy being in the moment (even if she doesn't know who you are she'll enjoy the company) Hold her hand - Tell her you love her - frequently!

Singing - find her favourite songs and sing them together!

Find objects from the past and discuss - she may not remember everything but some things will trigger a memory

Don't worry if she doesn't remember or mistakes you for someone else - it will happen not matter how upsetting just go with the flow - I was mistaken for my Mum and my Aunt - it wasn't great but if it helped my Dad I didn't care!

Lastly be kind to yourself and your sister - you Mum is well looked after and will be happy - just make sure you both have things to look forward to as well

Hi Nanny27 All I can say is keep remembering the good times. It was a sad day when my lovely mum looked at me with a dazzling smile and said, "Do I know you?" Somewhere, vaguely she thought she did and she continued to greet me with a smile whenever I visited. I, too, lived three hours from them but she had my dad and my younger sister there all the time. One cheering thought is that, right to the end, she often called my sisters by my name, as she used to do when we were children. If she wanted one of us back then she'd often shout, "Jean, Audrey... I mean Elizabeth!" (Or whichever order was required at the time!)

Good post witzend

The Alzheimer's Society is a charity with the aim of helping people living with any form of dementia and their carers. Unforgettable is a company.

Just to say, anyone dealing with dementia who isn't already aware of it, do look at the Alzheimer's Society Talking Point forum - very easy to find via google.
Although it's called the Alz. . Soc., it's for all forms of dementia.

Many have found the forum a wonderful source of help and advice - from those who know exactly what it's like, not those people who only think they know!

Whatever it is, someone will have been there. All too often there are no easy answers, but you can let off steam/have a good old moan to others who will understand exactly how you feel. So often people who have never had to deal with it, just don't have a clue.

Nanny27 there is a wonderful Facebook page started by the company Unforgetable. Do try them; the Facebook page is so supportive and the advice we can give each other I have also found very helpful.
Unforgetable is also a company especially started to help dementia suffers and their carers. They have a wonderful range of products and services too. My mother is 94 and also has started this journey, her memory is very poor but fortunately, she can still cope. My father died with dementia when he was 92 so I do understand and wish you well.

Worry not, Granny27, it will all fall into place. For the last 19 months of my Mum's life I visited her daily and when I approached their was the vaguest look of 'hope/recognition' and when I settled beside her she said 'Hello, who are you?' I replied 'I'm your daughter'. 'Oh, that's nice'. Same on every occasion but never sad or unpleasant. I settled for the pleasure of being with her and supplying her with the particular little treats she used to enjoy in the hope that may still have been the case. Obviously it was not a situation I had hoped for but it was never awkward or remotely sad. Hope this helps. Good luck.

I poor old MIL had this, along with Alzheimers. She became difficult but always recognised us, although she couldn't tell us what our names were - but then she'd always had trouble with names - so this masked it for a while.
It's good that she has your sister on hand to help with day-to-day life and I hope it doesn't get too stressful for her. All we can do is hope for the best. Later life can be very cruel, can't it?

My advice would be to live in her world and not your own, when you are speaking to her. At first my mum thought I was her twin sister and would ask where mummy had gone. I would say she had gone to buy us cakes. Then go into long discussions. About which cake she would bring back. Later I became her mum. Just go along with whatever fantasy she has.

I was told to take old photos to my mum, but it distressed her as she thought though were strangers. This illness takes many forms. So I would read up as much as you can. The Alzheimer’s society are wonderful at helping you through.

Nanny 27
That may never happen .Not everyone's mind works the same. My late DH after a series of small strokes suffered Vascular Dementia He would sit for hours in a world of his own. A good man, but never one for passing on compliments,.This dreadful disease brought about unexpected changes . I would be sitting with him in the silence of his world when out of the blue he would tell me what a good wife I was and many other small compliments I would never have expected.
Don't assume anything just wait and see.

My dear mother-in-law had dementia and stayed for several years in her warden supported bungalow and was determined never to leave, however she needed a hospital stay after an illness and she loved being looked after, her lovely gp visited her in Hospital and suggested to her that the time had come to let others look after her, to be a lady of leisure!!! We found a wonderful residential care home and she moved in. She was 91 and had lived independently for 40 years, and although she still had dementia she seemed to get better for a couple of years, having regular meals, lots of company and social events and activities organised by the care home. She died in January this year after a short illness. I can't speak for other care homes but Betty loved her new life ....even though she forgot her old life. We visited whenever we wanted and got to know many of the other residents. She did still know us but we did visit every day and I realise we were very fortunate in living nearby, but the important thing was that she was happy and well cared for,and we didn't worry about her living alone. The Alzheimer's Society run short courses to help carers understand about the illness and to meet our mums, dads, partners etc where they were,in their reality and to develop strategies for living with this difficult disease. We didn't feel we had lost Betty, much more we felt we had accompanied her in the last stages of her life....a life well lived.

So many have said the same thing: I lost my father 3 years ago from vascular dementia. He'd always been a distant, rather aggressive man and we weren't close, but when he became ill he changed completely. He would tell me he loved me, he would smile as soon as he saw me, and he was so gentle in his nature. I was sad that it had taken so long, but it was lovely to know that we had this time.

He'd forget names eventually, and forget our role in the family structure, but he knew that he loved us and would be happy when we were there. His last days were quick, and he never reached the point where he didn't recognise us. I treasure those last couple of years.

It's very hard, but you will cope somehow. With my mother it happened quite suddenly - one week her eyes would light up when she saw me coming - the next, they were just blank. I was just a 'nice lady' who made her cups of tea and brought her chocolate.

However I think she was still vaguely aware somewhere in her poor old brain that she knew me somehow.

One thing that surprised us after this - my sister who lives in the US and could only visit once a year, if that, came with me to visit her. And although my mother hadn't a clue that it was her own daughter, it was evident that she knew she was somehow familiar - she was very warm towards her, which wasn't always the case by any means with visitors.

One of my dds once went to visit on her birthday, with flowers and chocolates - 'Happy Birthday, Granny!'

The response was a very grumpy, 'I'm not your granny!'
Luckily dd was sufficiently clued up about dementia not to be too upset or take it personally.

Vile, horrible disease. My mother must have had it for at least 15 years - from very early 80s until she died at 97 - very late stage then and in a most pitiful state. FIL had it too, though it didn't go on nearly so,long. My heart goes out to anyone whose loved one is stricken with dementia.

You are so right blondiescotmy mum had vascular dementia we lost her 2 years ago this month and yes I felt just like you first when this awful illness takes over and like you say when they leave us. I swear the last day my mum new us all. She would call me her sister somebody called Debbie but I went along so she would stay calm. It is so hard when your mum was also your best friend then suddenly you have to be the mum is some ways. Also my poor dad who was dealing with this as well. So hopefully 1 day please god they will find a cure for this awful illness as I say just take each day with her as it comes it's so hard I know I lost my temper which I regret but everyone the carers the nursing home said we are only human and I kept that thought with me I wish you all the best x

Nanny27 my heart goes out to you. My Mum has had dementia/alzheimers for the last 16 years. She has been in a wonderful care home for the last 12 years as we could no longer cope. She knew who we were for a while then she started to confuse us with previous generations. She hasn't known us at all for a few years now, her face lights up when we visit and we like to think that there is a glimmer of recognition deep within. I heard a gentleman speaking on the radio about his wife who had dementia, he was asked why he continued to visit her when she didn't know who he was, his reply brought tears to my eyes. "She may not know who I am but I know who she is and will love her always".

I hope your Mum remembers you for a long time but as others have said try to go with the flow and be happy for all the good years you've had.

With vascular dementia it's not certain that the decline will continue or at what rate. This is different from Alzheimers where you can be almost certain that day will come.

Nanny37, I think that the wise words of Crazygrandma2 & other posters here, say it all. I can understand your concerns & you have my sincerest sympathy. (My own mum (94) has gone into a care home this week. She has vascular dementia and has declined notably, but still knows me & my sister.) I think it's very much a question of living day to day and trusting that deep down, you're still in your mum's heart & mind.

Nanny27, you will find lots of wisdom and comfort from Gransnetters and their experiences. Try to take on board what they say, and not be too sad. You are thinking ahead, and that is a waste of time. When the day comes, you will find that your mother has turned you into someone else that she loves and is pleased to see. My Mum had Alzheimer's and my DH had vascular dementia, so I know what you are going through, like many others here. My Mum knew that her daughter could not be a white haired old lady, but she remembered one of those, and was delighted to see her/me again. I became her mother, and was flattered! The people in the room at any time could be many people she had loved in her extended family and she was happy because of that. Hold that thought.