I am feeling so overwhelmed......

[MaggieH]

I am a carer for my husband who was diagnosed 3 years ago at the age of 60 although in hindsight the symptoms had been there a lot longer. He is a man who was in law enforcement all his life and in a high position. He has never acknowledged that there is anything wrong with him.
At the moment I am feeling so overwhelmed with it all as he is changing rapidly and every day there is something different in his behaviour. Do the symptoms level out at all or does it just keep getting worse. The doctors always say that everyone is different and that there is no set pattern.
I thought maybe here with all your experiences you may be able to help me.
MaggieH

 

[Grannie G]

Dear MaggieH

I`m afraid the doctors are right, everyone is different.

They are different with similarities, and most of us, as carers, face similar challenges, frustrations and fears.

The symptoms might level out or might get steadily worse, some sufferers recognize their condition, others refuse to acknowledge it.

Being overwhelmed is par for the course I`m afraid, as we can only live from day to day, or even hour to hour, in some cases. But what we can do is take strength from each other, and we do that on TP.

Love xx

 

[mocha]

Overwhelmed

Dear Maggie H,
You don't say if your husband is on any medication and is it Alzheimer's that he was diagnosed with.
My husband was diagnosed officially in May 2002 and he has been on Aricept or Donapezil ever since.
I also buy him Ebixa[Mementine] because I cannot get it free on our Health Service.
He has been in a Nursing Home for a year now and I honestly think he has been very stable on the Ebixa.
I know it is a real thorn in the Alzheimer Society's side that these drugs aren't available for everyone
Perhaps in your country it is a different story
Not admitting there is anything wrong is very common with dementia sufferers.
Please let us know how your husband is going on
Love
Aileen

 

[christine_batch]

Dear Maggie,
My husband was diagnoised at 58 and although I knew about Alzheimer's, Peter was showing symptoms before his diagnoises. I kept a daily diary and I wrote down everything I could, even my own feelings.
Did additional research so I was really prepared.
When I did take Peter to the Doctor's, he had lost his memory completely and it took me 8 months working on a daily basis for him to remember his name, date of birth etc., He had to give up driving because he was a danger on the roads. I know everyone is different but with the under 65's they show signs of deterioration quicker, this was explained in a meeting with Peter's Consultant.
There are going to be good and bad days and the only thing that I can say as a disabled Carer is take each day and each step as it comes.
Have you looked at the Fact Sheets ? Also do you have a Local A.S. Branch near you?
I wish you the very best. Christine

 

[Skye]

Dear Maggie

I understand how distressing this is for you, I cared for my husband at home for seven, he has just gone into care and is declining rapidly.

How will your husband progress? well, as others have said, every case is different. The only thing you can be sure of is that it doesn't get easier. There will be good days and bad days, and we have to treasure the good days and somehow get through the bad ones. But the general trend will be downwards.

I'm not trying to depress you, just giving you encouragement to make the mose of every day when you can.

Also, look after your own health. This means getting as much help and support as you can. I'm not sure how the system works with you, but the Australian Alzheimer's Society will be able to advise you.

Try to find some outside interests where you can talk to people not associated with AD. It's not good for you to focus your whole life round the disease.

And talk to us here on TP as often as you like. We're all at different stages, but we do support each other, and TP is a lifeline for so many of us.

Good luck, and a happy new year from the UK.

 

[Nell]

Dear Maggie,

Welcome from another Aussie!

Like your hubby, my Mum will not accept she has dementia - it seems very few dementia sufferers can. My advice (which I've learnt from other TPers) is not to force our reality (the "real" reality!) on to sufferers, but to go along with their "reality" as much as possible.

This can mean telling outright lies, and agreeing to outrageous stories, but as they truly believe these to be true, there is no point in correcting them.

This is easier said than done, for many reasons. It is hugely frustrating for you, and it seems very disrespectful of the person themselves. Sadly, we all learn the necessity of it.

I would urge you to get as much help as you can. Just because your husband believes there is nothing wrong with him doesn't mean you can go on as if that were true. Please seek advice on respite, day care, household help, etc. etc. Altho' you might think your husband will never accept these things, there are ways and means of getting around them! It often requires subtlety, such as saying he is going to 'a Club" instead of day care, or he is "helping the staff" with the others. For respite and housework, it sometimes works if the doctor says YOU are in need of help (which, after all, is the truth!).

I encourage you to find services to help you and then seek the help of TPers to find ways to get your husband to agree. The TPers are a very creative bunch - they have had to be!!

Every best wish for finding some answers - please let us know how you get on.

 

[MaggieH]

Thank you

Thank you for all your replies. I haven't done this very often and am finding it difficult to get to the right page. Practice will make perfect
My husband has been taking Galantamine sinc ehe was diagnosed he is now on the highest dose. I think it has stopped makin a difference. I do hav ethe fact sheets and find them helpful. I am in Queensland and we have an Alzheimers group in each state. i have been to some of their training sessions.Iknow of quite a few respite organisations but the problem is tha the will not go I will try some of the ideas that you hav esuggested. I cannot leave him home on his own now as he had no sense of time.
thank you again it is good to be able to talk to people with the same problems.
MaggieH

 

[Grannie G]

it is good to be able to talk to people with the same problems.

Keep talking Maggie. There is always someone here who knows what you are going through.

And there are no right or wrong pages, don`t worry about it.

Love xx

 

[Nell]

Dear Maggie,

If your hubby is refusing respite, could you find out if there is any way someone can come and stay at your home, while YOU have respite? I have no idea if Qld can offer such a service - even if they do, it might be prohibitively expensive......?

But if there is any way you could do this, you would find the break worthwhile. Are there any family members (brothers, sisters, adult children?) who could relieve you for a while? Sometimes family members only see the good job you are doing and do not realise how hard a toll it is taking on you. If they haven't offered help, this could be the reason. Anyway, I suggest asking for help - if there is anyone suitable to ask. You might be surprised how willing others are to help.

No doubt your hsband will hate this idea and want you to stay put. Sadly, you need to start doing what YOU need - not just what he needs. A characteristic of this illness seems to be (for many) a complete absence of any understanding of others and their needs - a loss of ability to empathise. Because of this, we have to do what WE believe is best, not allow ourselves to be guided by them. After all, they are no longer rational - and we are (hopefully! )

Every best wish in finding solutions that workfor you. Whatever you choose to do, we at TP will support you.