I went to visit my mum today.......

I know how you feel,*annsixty *for the last year's of his life my husband had dementia and I found it so much harder than his physical illness; you feel so alone.

In her last years, dear Mum used to constantly call "Help!" at all hours of the day and night and was unable to do anything for herself. In the end, the family couldn't cope and we found a residential nursing home for her. She died not long after this, and it's the feeling of helplessness I still feel, leading to occasional feelings of guilt that we couldn't keep her at home with the family - which I know is unreasonable as we did all we could for her.

On a positive note however, a friend's father is in the early stages of dementia and has been taking part in nationwide trials, with (we hope) promising results. His dementia has progressed very little, although it is not evident whether this would have happened had he not taken the trial drugs. But we have to think positively. Time will tell. Let's hope a treatment - better still, a cure - is found very soon, to stop the suffering of patients and their families.

annsixty

My mum recently died at 92. She had dementia in her last couple of years. From being v independent she needed residential care in the end, luckily a lovely home close by me. My source of help and comfort was a forum called 'Talking Point' on the Alzheimer's website. It was brilliant for helping me with my emotions, feeling and thoughts 24/7.. Don't know how I would've managed without it.. made me feel less 'alone' coping.

My mum had a dementia for 6 years and died at 90. I stayed close by her side all through the tough times. She didn't really know who I was but thought I was a "kind lady" except on one occasion when she shouted at me and told me to "piss off." She was also violent on one occasion and I must be honest I was often really scared of her.

Caring for someone with dementia is really really hard, and at times I despaired of ever having a life with my OH because mum took up a lot of time and energy. I was also working at this time.

After she went into a Care Home my husband and I relaxed a lot and when mum passed away we did have 7 years of freedom before he died from cancer.

I'm so glad I stood by my husband and mother through their illnesses but sometimes I think, well there's no-one to do that for me, but when I used to say something wasn't fair my husband used to say "who ever said life was fair."

Interesting to hear about other wives thinking absent husbands were having affairs. My mum who had dementia said something like that about my father when my sister and I went to tell her Dad had died.
He was such a "good" man and just not the sort to ever do anything like that.

From being very fit he developed a cancer when he was 86 and died in hospital within a couple of months.
My mum had already gone into residential care. One day we took him out on ward leave from one hosiptal and drove drove him the 12 miles to the hospital my mum was in one visiting time.
He deteriorated very fast and could not make the trip again. My mum died two months later.

annsixty I think you and others who look after anyone with severe dementia full time are quite incredible. I honestly don't know how you cope. I know it would be more than I could do. My mum's repetition and endless mixed-up monologues are one thing, but like Falconbird, I find her nasty, spiteful comments and periodic aggression frightening too. My weekly 6-hour care times are really stressful, and I feel guilty that I feel like that when my sister uncomplainingly does way, way more than I do. Sorry, this was meant to be a plaudit for you, not a whine about me. [tea]

Thank you Icy I should say my H's dementia is not yet severe but endlessly frustrating over the most trivial of things. This morning it has been doing the washing. I do not like washing at the weekend but I have done it to save the hassle. He changes his clothes on a whim and can wear three pairs of socks a day!! Yes it can be very funny at times but at others....and he will only wear clothes which are brown or beige, must be a sign of something there, so a wardrobe full of other stuff never gets worn. It is these little things the books never tell you.

My mum was determined this morning that her bra had to go on last....

icyalittle - yes I'd forgotten that mum used to make me smile as well as scare me. She developed a real dislike of fresh flowers, and when anyone bought them in, she would smile so politely and as soon as they were gone she would hurry (really fast) down the corridor and give them to the first person she met and then hurry back.

I bought her some blue plastic roses with silver sparkles on and she loved them.

Leonora, annsixty . I thin kyou are marvellous and I know it can't be easy. I hope I am able to do what you do if the time comes. too for people who have lost their loved ones to this awful disease after caring for them.

I don't take it personally, HeatherAnne but sometimes, after a lifetime of living with my mother and her attitude to me, it really gets to me. Stansgran, you are most probably correct but I hope that I have learnt from my Mum and that my children (particularly my daughters!) know that I love them.

A while ago I saw a very appropriate quote, 'It is hard to believe that you matter to your own children if your own mother has never given you a feeling of self worth.'

Ouch! - that quote of yours kitty really strikes a chord. I marvel at the kindness shown to us by our children; and my Mum was a problem - probably lots of love to give, but did not know how.

When my dad was being assessed the doctor was asking him the usual questions. Who was Prime Minister during the war? Dad immediately said Churchill. And who is Prime Minister now? Dad scoffed and said, You know quite well! It's him off the telly!
But he had no idea where he lived, he didnt know his wife had died, he didnt recognise his best mate.
Either the mind goes or the body goes, and I can't decide which is worse.

Kittylester I know how hard this is. My dad developed dementia just after my mum died and I cared for him for 12 years. I have 4 siblings but they weren't involved to any great degree (but that's another story). He forgot my mum more or less immediately and the others followed son after. When he eventually stopped recognising me, six years before he died, it broke my heart, but by this time his physical deterioration had escalated and this became the main concern

It's such a difficult thing to cope with but like Sweetness1 I found Talking Point really helpful.

He was a difficult man prior to his illness but a very loving person underneath it all, so at least I didn't have that dilemma to contend with. Keep your chin up lovely

Icyalittle, I so agree with you in your praises for those who look after parents with dementia full time. As much as I loved my parents- I couldn't have done it- ever, full time. Be there for them, but not 24/7. I know this is so personal too, but I feel it is better for experienced staff to do so- much easier for someone to be washed and wiped, etc, by someone who is not so close. i'd certainly prefer that, and would not want that aspect of things to come 'between' us.

But also better for people who can do this for say, 5 or 6 hours a day, then go off and live their life, have some fun- get away from it all, rest, breathe, love, whatever- then go back on duty for work. As a daughter, you can't ever switch off, physically and emotionally- and this really does take a toll. I'd just hate with a vengeance to feel caring for me would be robbing a child of mine of a normal life- and would never want this nor expect it.

Dad's dementia made it difficult for one person to look after him 24 hours a day. He had a habit of putting a plug in the sink, turning on the tap and walking away. He would also turn on the gas jet on the cooker and walk off so he was a danger to himself. Any papers left lying around would be torn up, and also this coincides with our sons at the awkward teenage stage with me in the middle like a sandwich. I loved him so much, but the doctor told me that one person cannot do 24 hour care. I could not leave him in the house and go shopping, for example and I was exhausted.
Oh for the days when there was a network of extended family members living in the same area to support one another, but sadly for most families those days are gone. Its just me.

I go visit my mum most days, and its hard. I'm a newly married (married at 61) and my husband has a mum to visit and contend with also.luckily we are all in the same town. Each time we plan a day out, or book holidays away in our caravan they "kick off"
So hard to be hard and simply go anyway. We promised each other we would really enjoy our retirement.How can we with a clear conscence

Neither mums have dementia. Blessed. I can't comprehend what that could be like.

It is a horrible cruel disease. It steals those we care about bit by little bit, dragging out the mourning process for far longer than it should.

Sending you hugs and support over 'tinternet.

for all of you coping with a loved one with dementia. So distressing to see someone losing their 'self'. Watched my MIL fade away like this and poor FIL nursing her while fighting off any help offered. It was a difficult time.

Since writing about my visits with mum who doesn't have dementia, my new husbands aunt, who is very close to him, appears to have it.
So sad. Affecting so many people around her. Turning life upside down. She is 87 .