Dealing with dementia

Ninathenana, the Alzheimers website sounds a useful suggestion - I'll give it a try.
Thanks again to all who have responded to my queries, especially FlicketyB. When or if things change I'll post an update.

Mum has been in a care home for 3 mths now, she has mixed dementia. I dreaded her not being happy at the home, but we are very fortunate in that she has settled well, and dosen't ask to go home. But after spending 48hrs in hospital last week, she had NO idea where we were when I pulled up outside the home on her return.

"Why are we here" asked mum
"This is where you live mum" says I
"Do I, I don't remember" her reply

FlicketyB I couldn't have put it better myself.

Onlyme can I suggest you try the Alzheimers web site and join the Talking Point forum for carers/sufferers. They have been invaluable for me. There are people on there who care for those living with all forms of dementia.

onlyme, . It is so difficult. Could you go along with the hotel visit theme with her, suggest you try a night, and as you say you need to slip away unnoticed when you go do just that. It is so easy to make suggestions when you are not coping with the problem.

I can speak with such clarity about how I managed things, but that is not what it was like at the time. It was constantly feeling at a loss, at a disadvantage, coping with something I had no experience of until thrown in the deep end. Finding one strategy worked with one relation but not with the other.

Even now every couple of weeks when I visit my aunt I do not know how I will find her. On really good days she is in the dayroom or sitting in the chair in her room and we can have an animated if sometimes surreal conversation about fellow residences and life in the care home, other times she is sleepy and says little, or even unwakeably asleep so that I sit beside her with my Kindle for 45 minutes and then go home. At worse she is distressed and living in some other world where I am mistaken for a carer, or someone she knew a long time ago.

Probably, Onlyme, the one thing we can offer you is a sounding board for your difficulties and problems with people, many of whom recognise your experiences only too well.

FlicketyB, thank you for your constructive suggestions.
My wife would definitely not remember conversations from one day to the next. I can see that your idea might work with some but my problem is that, when I am visiting, my wife believes that we are visiting the home as a couple as if it were an hotel. She therefore thinks that we will be leaving together to return home and for me to suggest that is not the case would disturb her immensely.

onlyme, it must be very difficult for you. I am no expert, just someone who has had to care for family members with dementia.

It is very difficult to suggest communication patterns when one has not met the individual in question. Dementia affects different people in different ways, as I discovered when I cared for two family members with vascular dementia which affected each very differently. I agree, trying to reason with your wife will not work. Her mind has moved beyond that. Could you respond to her requests to come home by suggesting that it is not possible today but perhaps you could talk about it on your next visit or would she remember your suggestion from one visit to the next?

I found at different times different approaches worked. My uncle became convinced he had had an appointment with his bank manager that he hadnt been able to attend and nothing we said to reassure him helped . This went on for weeks then one week I looked at him and said 'It is all right I have spoken to the bank manager and he says it is no longer necessary for you to visit him.' That worked. My uncle was ex-army and he and his wife were convinced their second home was something to do with the army, that the manager was also army, my aunt always referred to her as the Commandant and was absolutely convinced they had met on a previous posting. It caused no distress or worry so I just let that one run.

I have attended some excellent training sessions on dementia through work which were delivered by Dr Graham Stokes (he is a psychologist rather than a medical doctor). He is an inspirational speaker who really helps you to inhabit the person's world and make sense of their behaviour. I haven't read any of his books but I would suggest they may be worth looking for.

I was also helped by reading 'Contented Dementia' - I wish I had heard of it earlier when my wife was still at home.
The most difficult exchanges with my wife now occur when she demands hat I take her home. Any attempt to reason with her along the lines that she needs to stay to be looked after would certainly (imo) lead to her becoming agitated and disturbed. My approach thus far has been to ignore what she says. I'd welcome suggestions of a more useful response.
I'll continue to tell white lies if I think it will save my wife from any torment.

Mum's consultant put it as 'Don't argue but don't tell lies' which generally works for my brothers and me, though you can be sure that Mum remembers the exact things you don't want her to.

Keep talking to us onlyme, quite a few of us have relatives with dementia of one sort or another.

Not sure if any of you are listeners, but the way the storyline re dementia was handled in the Archers was excellent. The whole thing, from the early stages to Peggy's realisation that she really couldn't cope seemed to be a very realistic and sensitive portrayal of the situation that many people find themselves in.

There was a brief mention fairly recently about Peggy going to visit Jack and taking some fallen leaves from the garden to show him, so that they could talk about the colours and the shapes. I found it quite moving.

Phoenix, thank you .

When my aunt and uncle's lives suddenly hit the buffers, the way thse things tend to, the responsibilty for taking over their lives fell to me as I lived only 20 miles away and the rest of the family lived over 100 miles away. I had considerable experience of working with older people because I had been a voluntary Home Visiter with Age Concern for 10 years, but I had relatively little contact with people with dementia. Of a sudden I had to undertake an immersion course.

I was immeasurably helped by a book published at the same time by Oliver James called 'Contented Dementia' and based on his MiL's work with dementia patients. Although it dealt with people with Alzheimers and much of the detail was inapplicable to my relatives, the broad idea of respecting the demented person's life view, providing it didnt cause harm, and inhabiting their world came from this book and I still find it invaluable.

onlyme you sound like a very good, caring husband, please bear that in mind, there are many that would walk away.

FlicketyB, your post was very touching and insightful, I think if ever there was someone whose words should be heeded, it's yours.

Perhaps you should write a blog on it, or even cast the net wider?

How sad for all of you affected by this. I don't know what to say. onlyme; do you have plenty of support form your family [you mention a son]? There are always people here to talk to. You're not rambling; you're chatting with friends...

Thank you for all your comforting replies.

I guess you collectively have confirmed my fears that my wife is unlikely to change - at least she still recognises me although sometimes confusing me with our son. I am most concerned about her when I am not visiting when she spends her time wandering the corridors of her unit and often fails to go to bed at night. Her lack of acceptance of where she is means that she is very uncooperative with the carers who wish to wash,dress and toilet her and my worst fear is that the care home might decide to have her transferred to a psychiatric ward somewhere. However a recent change of medication has made her more subdued and I'm hoping that it continues that way - now I'm just rambling on so thanks again for your thoughts.

onlyme, it is really so difficult when somebody you love has vascular dementia there is no clear pattern about how it develops and it varies from person to person. I cared for my aunt and uncle who both had/have vascular dementia, although my uncle has now died, my aunt is still with us, but like your wife in a care home

I think that if after 27 months she still doesnt realise she lives in the care home then that may well continue indefinitely. It is not a question of her not accepting that she lives there but rather of not remembering that she lives there. Nothing you have said suggests she is unhappy or distressed when you visit and she sees her name on the door.

People with dementia like this live in a parallel world to the one we live in and as they cannot live in or understand our world we have to inhabit theirs. Because their memory is faulty and they feel confused they will try to make sense of what is happening to them and their conclusions are often surreal. You need to relax into your wife's world, whatever that now is, do not worry about her not realising she lives there or if, like my aunt, she becomes convinced the home is owned by the Great Westen Railway company or something similar. Express interest in her ideas, reassure her with vaguely supportive/non commital comments and accept the world she inhabits as your own. The most important part of her life is having you in it treating her as if her world is normal and wandering in and out of it as if you were at home and just walking out of the kitchen into the living room.

My aunt has been in care for four years gradually going down hill but she still knows who I am, greets me with pleasure, sometimes has fleeting memories of the past which we share - and has probably forgotten I have just visited within five minutes of me leaving

Dear Onlyme - I was very touched by your story and my heart goes out to you. my father had this type of dementia and was in a nursing home for several years. It was his choice, made when he was still well enough to satisfy social services that he wasn't being pressured. I don't know that she will accept the situation but she will gradually forget about going elsewhere. Have you put some photos of her when she was well up in her room? It is very important to remind the staff of who she once was. Above all, do take care of yourself and be kind to yourself. Do not 'beat yourself up' about things. You are in a very stressful situation and your wife is in the best place for both your sakes.

onlyme, so sorry to read your story - such a hard thing for a husband to cope with.
We cared for Father in law through vascular dementia and what you talk about sounds very familiar.
Yes, there is no real short term memory and what you say to her will soon be forgotten. The advice we were given was not to try to reason or explain but to 'enter their world'. So we would respoond to his comments and questions as if they made sense most of the time. I say 'most of the time' because some days would be particularly bad and the repeating would sometimes get too much for us and I am sorry to say either husband or I would say something a bit dismissive. To be honest no real harm was ever done as very soon he would forget the whole conversation.
I am no expert, dementia is very personal, it manifests itself differently in each person. FIL knew he was 'not well' and when we finally admitted defeat and found a good care home for him he knew that he was living there and accepted it was the best solution. Yet on other levels he would forget that he had just said something. He had been a very clever man and perhaps althogh his memory processing had shut down his underlying intellect carried him through. Your dear wife may never fully accept what is happening to her but I am sure that as long as you respond to her in a caring manner and show her patience and consideration she will feel this even if she does not fully understand you. I really dont see any harm in using a few fibs to make things easier. We did on many occassions but always within the logic of the situation. If he stayed happy and content with his shrinking life then I really dont see what harm there was. Good luck and think about yourself, you are the one who needs a bit of care.

My aunt, who also had vascular dementia, was always convinced she was in her childhood home. All we could do was inhabit it with her. Your tactic of making a 'temporary' departure, is exactly right, onlyme.

Thanks Phoenix.
After some traumatic departures in the early days I abandoned the idea of saying goodbye. Since then I've mainly used the excuse of needing to go to the toilet or sneaking off if my wife has a nap.
Since she forgets what's been said within 10 minutes I'd rather tell a white lie rather than confront her with the truth that might upset.

onlyme , that must be very hard for you, how does she react when it's time for you to leave?