Alzheimer's and living with it.

I am very sorry for you Ann. Dementia is a dreadful disease, only those living with it know how awful it is. My husband had Lewy Body Dementia, so in addition to the weird or non-existant conversations when he just used to look at me blankly, we had the Mafia living with us, a colony of bats in the bathroom which assumed a praying position when he went in, bugs shaped like zepplins that bit him, "creatures" who dismantled his wheelchair and must be stopped, and his bionic arm. That's a mini list.He dismantled things if I was out of the room for any length of time, like the breakfast table he took the legs off when it was fully loaded, and his armchair raiser thingy, which looked like a jigsaw puzzle afterwards.The only help I can give you is to say remember he didn't ask for this either, and that he is no longer the man you loved and married. It sounds very hard, but distancing yourself is the only way or you would be in bits the whole time. He isn't doing this on purpose, he is ill. The isolation for the carer is only just now beng recognised, take advantage of every bit of help and respite you can get. My husband was totally negative about going to a day centre twice a week, but it was a life saver for me as I could get things done at home, and he never remembered being there an hour after he got home anyway. It's very much a case of gritting your teeth and carrying on. Not very helpful really, as I am sure you know that.

Dear Ann what a trying time you have, and what love you have for your husband, which must be sorely tried! The evenings are notoriously lonely, although I have no personal knowledge of this, but I am sure after a tiring day, everything comes washing over you. It is good that you wrote in, it does sometimes help to express the feelings you have. Take care.

I have a ( male) friend recently diagnosed with Alzheimer's .His wife died 2 years ago and they had no children. He has no relatives nearby.
Does anyone know of an organisation that can help in these circumstances ?

Youngeil, your council's innovative 'shared lives' initiative sounds brilliant. My mum went into respite once, in a council run unit, sadly it wasnt a good experience and was never repeated.
Minder, how very sad to hear about your husband. Early onset dementia is shattering. Look after yourself.
Annsixty, no need to regret your post, it was how you felt yesterday, hope today is a better one. Take care.

Singlegrannie Here's a link that may be useful. They help and advise with all forms of dementia:

www.alzheimers.org.uk/

Speaking personally, for those of you who have family or friends or neighbours with dementia, please continue to keep in touch. Its too easy to think, oh they dont recognise me, its difficult, i dont know what to say, he/she doesnt speak anymore, whats the point etc. etc. but for the carers out there, it is a lifeline to know that friends and family still care, and are there. Try and visit, listen to music, which surprisingly often effects a response, do some drawing, just hold their hand, and give the carer, who is exhausted a bit of time to just be. Most importantly the carer knows that people do care, and that really does help.

annsixty, so sorry for your situation. I know someone in the same position as you. His wife is in the late stages of this horrible disease, and it makes me sad to think of the life they could be both enjoying now. Luckily for her, she is out of it, but he lives from day to day in a sort of emotional and physical prison snatching time off here and there.
Such a cruel cruel thing.
Bless you both

Thank you MiniMouse I will take a look.
My problem is that he is beginning to rely on me and I have other priorities and responsibilities.

Silver lining, I do keep in touch with my friend but unfortunately there is no carer to appreciate it !

Single grannie it's good of you to keep in touch, and even though there isn't a carer there to help, you know you are doing what you can to help your friend, don't take on more than you can comfortably manage and Contact Alzheimer's society perhaps the social services and doctor for info on what help is available.

Ann, as you are aware, mum has dementia and the thing that kept us sane was laughing about the things she said and did.

I imagine you don't have that luxury and I'm sure that living with it day to day is no laughing matter but we are always happy for you to have a rant either on here or by pm. Use your granspals!

Have you explored finding a place at a day centre for dh? A friend of mine has someone (a volunteer) who comes in and looks at photos over and over again with her Dh as that is his current obsession.

I do so understand Annsixty. My DH was diagnosed with vascular Parinsonism dementia six years ago. It can be a very lonely business for the carer at times, no matter how much you love them. So glad you have the support of a good friend, but it is those moments when you just need to share some information or news that you feel it most. Every good wish from one who knows.

How my heart goes out to you. Are there no clubs of associations locally that would either give you some respite, or at least give you both a social time away from the same four walls? My dear friend who is in your situation as her husband has vascular dementia has found a local club to be a godsend, just a thought. Look after yourself too - hopefully you can have some little treats to lift the day here and there.

Silverlining I am trying not to let him take me over ! I went with him on his appointment at a Memory Clinic and insisted that they recorded his sister (who lives 50 miles away, is disabled, does not drive and is currently in Florida) as their contact.Afterwards I took him home and dialled the DVLA and his insurance company and stood over him while he informed them of eehis diagnosis, as the doctor at the clinic had told him to do this and he would not have coped otherwise. He was unable to navigate the press button telephone reply systems.A couple of days later he rang me to say he had a form from I assume the DVLA and he couldn't cope with it. A couple of days later he rang and told me he had put me down as his carer on the form.
Sorry for the rant, I just needed to get some of it off my chest, thanks for listening .

Annsixty dementia /alzheimers is a horrible disease. You do need to access what support you can. As you are caring for him you may be eligible for Carer's Allowance and he may be eligible for Attendance Allowance. If you speak to your GP they may be able to refer you to your local Carer support worker who will be able to tell you of what help is available in your area.
If not there's the national charity Carers UK who will have loads of information. Do hope this helps.

Ann please don't ever regret posting how things are since it is so important to have somewhere that you can let out those feelings. There will always be someone on here who can totally empathise with you from similar experiences and be of great help to you and then there are others in similar circumstances who perhaps just lurk and need to know that they are not alone. It is of enormous benefit to have someone say to you that they understand and that the way you are feeling is completely normal and that you shouldn't feel bad for feeling the way you do - whatever that is.
A work colleague of DH didn't turn up for work one day and wasn't answering the home phone so someone called in to find out what was wrong. It was only then that it was discovered that she was trying to work full time and care for her very young family and her husband of 39 who had dementia! She had, very understandably, just taken off and gone to have her hair done one day when she felt that she just couldn't cope any longer. She had never felt able to share her problems but after that more people helped out which made life a little easier for her.
It is so important to share with someone, anyone about what you are trying to cope with. GN is a bit like a safety valve in that respect.

((((hugs)))) and flowers to Ann and anyone else trying to cope. xx

Hi Ann !

Sorry to hear how you feel ....same here ! My OH is 83 and I am 69 and as we live in rural France any support is not around ....and it is worse some days than others ! We have only been married for 15 years, and out of those, I think the first 5 or 6 were the best ! He was always very active at DIY, gardening, etc ..he still insists he can do it, and only last week was on the roof cleaning it .....I have someone booked to come and clean the roof, walls, shutters, etc ...but he insists he can do it himself ! I am concerned that if he kills himself everyone will say Why did you let him do it ? but there is no stopping him. Today he has, so far, been reasonable. It is pouring with rain and stormy, so he cannot go outside and injure himself (he does however have a professional type saw bench in the shed which he uses ! I hate it when he gets that out !) .....but the decline is noticeable, since first diagnosis a few years back, when he was collecting me from hospital after chemo ....he never came for hours ...he forgot where the hospital was ! I laughed about it, saying I though he had gone via the DIY shop ......but now, like your OH, he cannot recall what happened yesterday. We went to the DIY shop last week, at his request, and he said 'What are we here for ?' //I said I think it is paint for the shutters ////'Oh, do I want some' ? ...well, you said you did ! Oh, I'll get a 0.5 litre tin - that'll do (we have 24 shutters, backs and fronts) ...No, I said, you will need at least a 5 litre tin .....at which point he stormed out, shouting at me that I was stupid and didn't know what I was talking about ! (he is very aggressive with his illness ....some people are happy most of the time, and unaware ...) I can no longer go out for long as he leaves doors open, with the keys in them, the hob on (I just changed it from gas to electric for this reason !) and until recently he had a mobile gas heater in the conservatory because he feels cold ....he threw it threw the plate glass window in a temper ....so I have had electric radiators installed instead ! Now he has the temperature at 28 degrees and the doors wide open .........you will know what it's like !

Sorry for the lengthy saga, but I am sure you know, it does help to talk ....sadly, the friends we had have disappeared, fed up of hearing the same stories from years ago over and over ....I, like you I suspect, have to listen and pretend its the first time you have heard them .....even if it is the tenth time in less than two hours ! ....do lets keep in touch ! sharing helps and you have to keep a sense of humour ! Right now we are off to the garden centre for some geraniums ....if he remembers, bless him, what it was he wanted to go for and we don't like the other day, come back with two pairs of garden shoes ...........

Hi annsixty. I can totally relate and sympathise with you. I care for my husband, who is partially disabled, wheelchair bound and has vascular dementia, virtually 247. It's a very steep learning curve but, please, allow time for yourself as it's the only way to survive. Try to go with the flow with conversations that don't make sense and, for your own sanity, try to avoid "putting the details right" as it's the road to nowhere! I have carers twice a day seven days a week to help, who are brilliant and my husband goes to day centre three days a week, without which I would sink. Get as much help and support as you can. The Alzheimers Association Talk Point on their website is brilliant and is a lifeline for lots of carers if you haven't yet heard about it. Take each day as it comes. It's a dreadful disease and one I wouldnt wish on anyone or the care involved but please, don't ever feel guilty about expressing your feelings. You need to. Sending you a big hug with love and understanding.x

Single grannie I don't know what to say, there will be so much paperwork and official stuff especially things financial at this early stage, you seem a caring friend but it's difficult to have been left with managing it. If there are no family who can be involved I think you should contact social services elderly care, Alzheimer's society, and/or gp for advice, suggestions and assistance. You can still visit your friend and support him as best you can but not necessarily take full responsibility for him as no doubt you have things going on yourself which need attending to. Not an easy situation. Good luck

Violette have you contacted the doctor re your DH or seen a specialist? There are tablets available for dementia sufferers that help control the aggression and violence.

Oh has PD and a bit of memory loss connected with this . I can relate to the loneliness and the unremitting drag of the loss of proper conversation , we have carers 4 times daily and they do take time to chat to me when they can . My family are supportive and make me go out , we pay a lovely lady to sit with him , but all the friends from various activities have faded away .......... one told me it was too embarrassing when Ohs speech became fainter !

singlegrannie It's just occurred to me, but has your friend set up Lasting Power of Attorney? If he is not 'too far gone' in terms of the dementia it may still be possible to do this, as long as he fully understands what he is doing. It makes life so much easier for whoever has to deal with his affairs - financial and health.

I have now realised how many of us are in the same situation and I feel a sisterhood with you all.
It is very upsetting when friends fall away and it would be easy to say that they couldn't have been friends in the first place, but actually they were.
What makes them drop us I really don't know. I still see some of the wives occasionally, it is the men who can't cope with the change.

So much for you to deal with and winced at the idea of not having a decent conversation for days...... Might Silverline be any help?