My 57 yo wife

[davidw]

My wife of 34 years was diagnosed at 55 with AD she is now 57 and has slowly gone down hill. At present she can,for example

Dress herself
Attend to her personal hygiene
Join in conversations
She still drives a little
Goes out socially with friends or with me

She cannot
Do any houswork
Concentrate to read
Walk the dog on her own

She has rapid mood changes and blames me for most things

Is there any advice for me particularly on what comes next,when and how to handle the mood swings

Thanks in anticipation

 

[inmyname]

You have my immense sympathy especially in coping with someone that young with AD

My Mother is 89 and is rapidly developing being on another planet with AD

Personally and IMHE I would ensure you do not use Aluminium or non stick coated pans or things like electric cofffee makers , slow cookers ,bread makers ets as they all have hidden aluminium elements in them
avoid the use of aluminium foil and definitely do not smoke

 

[Brucie]

Hello David

sorry to hear what you say.

Dementia comes differently for each person, really. Firstly, the type of dementia makes a difference.

My wife was 55 when I figured out what the problem was - she was 58 by the time the doctors made a diagnosis. We've been together for over 40 years now [though not fully together now as she is in a care home].

Dementia for anyone is an awful thing to have, but for someone young, it has impacts that it will not have, or will have differently than for someone older. In the same way, things that hit the older people with dementia may be experienced in a different way, or at a different stage by someone younger.

As Inmyname says, if you reckon that aluminium, coal dust, red meat, Smarties, drink or smoking may have contributed to the dementia, then you may want to remove it from the equation. Too late for your wife, but it may simply make your mind easier.

Is there any advice for me particularly on what comes next,when and how to handle the mood swings

First bit of advice is to be prepared for anything from now on. Take care of yourself; she needs you and you need to be strong, and keep a life.

Try and enjoy each moment with your wife as it comes.

Try to make her life as easy as possible, while you can do that.

Don't try to argue with the dementia whan it speaks using her voice.

Sometimes you just have to agree with the clearly wrong, sometimes you have to lie dramatically, sometimes you just keep quiet, or take yourself to another room and scream.

See your GP about medication for her mood swings, if something has not already been prescribed. If there are mood swings, then sundowning may not be far behind [do a search on TP to see more about that]

If medication doesn't work, then don a groin protector for the bad times, and just try and make it through the worst ones.

Always remember, it is not your wife's doing. It is the dementia.

If you still work, then you will need to consider arranging care at home for her at some time, maybe not yet though.....depends on her condition.

Things can develop really slowly for a time, then escalate, making the bottom drop out of your world. So, enjoy things when they are good. I can never say that enough!

The doctors diagnosed my wife with Alzheimer's but I later found out she has not only that, but also vascular dementia. Same prognosis, different rate of development.

Possibly the best advice would be to use Talking Point as much as you need, for whatever purpose - to learn, to moan, to advise someone else, to ask what may seem weird questions, ....... just use TP. There are loads of us here who have trodden the slippery slope - are still sliding down on our butts on many occasions. Somewhere here there will be help for almost anything.

Above all, remember that what people post here is not gospel. It is opinion. That includes this message!

Take a consensus from what a number of people may say before accepting anything.

Use the resources provided by the Alzheimer's Society on the main AS web pages, where you will find fact sheets, and also the number of the Help Line.

Good luck, you have some difficult times to come, but also some good times with your wife, so do, do, make the most of them.

I bought my first digital camera in 1999 when I was at your stage. Never regretted it and I have a library of memories on disk now of our final years living together.

 

[connie]

Dear David, so sorry to read of your situation.

My dear Lionel was diagnosed when he was 60, although it took 4-5 years to make that diagnosis.

During the first 2 years we crammed in everything we could, and have many, many good memories of those early days with AD

Now, 4years on things are definately worse, but, on the days when his humour still shines through, it's not ALL bad.

I agree with Bruce, who has had so much experience with Jan, that be prepared for anything. It is always the dementia talking when he does not understand, or does something totally out of character. Yes, I have had the bruises, you just have to know when to duck......although he would not have the strength these days.

Take as much time for yourself as you can get, you need to look after yourself.
You have found a really good forum here, and look forward to hearing from you again.
Take care, Connie

 

[connie]

As I was finishing my last post Lionel needed to go to the toilet. His legs gave way and he ended up on the floor. We tried and tried, could not get him into kneeling position so as to help him to stand.
Phoned paramedics, one came within 5 mins, but realised that it would take two to lift him off floor and into bed, so he phoned for back up.

Whilst waiting the young man did an ECG on Lionel, so I took a photo of him on the bathroom floor. It will be useful as he will not remember tomorrow. Well nearly 2 hours have passed so I am more than ready for my side of the bed now.
(Incidently the cot bars are working) Connie

 

[Brucie]

Hi connie
glad you were able to get support from the paramedic. They are great aren't they?

I had to call them once late on when I saw Jan turn over in bed and she went clean off the edge. She bit right through her bottom lip and was very shocked.

I called the ambulance - it was nearly midnight - then I had to leave Jan to go into the lane with a torch to guide them in [we're a bit rural!].

They reckoned that there was nothing they could do for her at Guildford Hospital, so the two of them, with difficulty, lifted her back into bed.

My plan had been to drive her to the hospital if the ambulance had not come - that would clearly have been impossible, as would my getting her back into bed on my own.

I hope you slept afterwards. Glad the bars work.

 

[Lynne]

DavidW

Hi David,
I read your post with interest, particularly the methodical/analytical way you set out what your wife now can/cannot do. Would you mind a suggestion?

You say your wife cannot concentrate to read (from which I assume that she used to read pre-AD).
How about reading to her aloud from books of her choice? My Mum (older than your wife) was given several books this Christmas, and also for her last birthday, but likewise cannot hold concentration enough to read them. I find that she likes to have them read to her, and can usually sit for 2 or 3 chapters before her attention wanders. I quite like the activity as well, and it's nice to have a peaceful atmosphere for a while, instead of "Why can't I do that!"(Mum) or "Mum, please don't ..." (pick anything you can think of!) from me.
Word of warning - don't suggest it in terms of a 'bedtime story' as that may be taken as an insult.

You might like to look at a couple of threads on the 1st board with regard to driving & AD sufferers.
Regards

 

[davidw]

Thanks

Could I thank you all for your very helpful advice its good to feel there is support out there

 

[susie]

Hello David
Your wife sounds how my husband was just over 18 months ago but things have progressed quite quickly. Just bear in mind that it is different for each person. His mood swings led to violence and medication solved that although I think we now need an increase in dosage.
What I've found useful is what my CPN said. You can't reason with a person who has no reason left. Even after 3 years since he was diagnosed, I still forget this and try to make my husband see reason, usually ending up with me feeling worse than him.
The important thing as everyone else has said is make the most of this lucid time and treasure the memories. Always have some time for yourself to recharge your batteries. When things get tough, I have a bath or shower with a radio on so that I can swear away to my hearts content. My David has no idea what I am saying and so I come out all squeeky clean and smiling!!!then I can start again.
Get all the help you can from social services. I started help quite early on and I'm glad I did as David will not accept strangers now, but this is a very personal view.
You will find everyone on TP has had similar experiences and there is no short cut to coping. It is something you have to learn through experience.
Hope you have a reasonably calm time for the forseable future.
Susie

 

[jc141265]

To David

David,

I will not add more to what everybody else has said:

1.Partly because a lot of what I would have said has been said already; &
2. Because in some ways it makes me sad to hear your questions that sound like echoes of my own a few years back, its so hard not knowing whats in store and there really isn't much information out there, yet here I am and I don't know where to start, how to help enough??

However I will let you know I am here if you have any specific questions to post or PM, as I have watched my father's decline and my mother's experiences caring for him for the last 6 years. He was 55 when he was showing the kind of symptoms your wife is now and he's now 60, 61 in May. He now needs to live in a home as it became too difficult for my mother to cope otherwise.

Last but not least, I do recommend a book called 'Learning to speak alzheimers' written by Joanne Koenig-coste who herself had a husband who developed early onset alzheimers when they still had young children. Reading the book helped us realise you need to take a bit of a Daoist approach to the disease, don't waste your time and energy fighting it, but instead go with the flow and steal the good moments by doing so right from under the disease's nose. Like Brucie said don't fight it, don't waste precious time arguing, and try to remember that it is not your wife but the disease talking pretty much most of the time she is behavinng out of character. Its not her wanting to hurt you, just the disease messing with you both.

Ha! I've said more than I was planning to afterall. But have to finish up now as hubbie just got home and dinner's ready...but don't forget I am here if you have any questions.