Utterly terrrified

[NinaHeart]

My H, aged 46 is undergoing neurological tests with a possible diagnosis of early onset Alzheimer's disease. We are both, naturally extremely scared of everthing that this implies.
We have only been married a year, and because of his child care responsibilities we don't even live together full time.
I'm not sure why I'm posting this really. It's just that I can't tell anyone in real life (not until we are certain, and that takes some time) and I can't bear this burden on my own.
if it is so, we would have no support from family and it would, of course, change eveything we had planned for the future.
What am I to do?

You really can't do anything except wait for the results of the tests - and try not to assume the worst. And be very kind to yourself.

It sounds very scary. Why would you have no support from family?

I think you should confide in someone in real life, there is only so much MN can do to support you remotely. Via Google, I came across the Alzheimer's Society forum - board for younger people - I would definitely post there to get some information from others who are in your shoes.

Try not to assume the worst yet, wait and see what happens. I'm keeping my fingers crossed for you.

So sorry you are going through this. Just wanted to send a hand out to let you know people are thinking of you.

You poor thing.

I know it's so easy to say and so hard to do but until you have the results of the test you don't know if that is what is causing your DH's symptoms.

Can you find ways of distracting yourselves until you have the results - keeping your minds off it as far as possible?

How long will you need to wait?

We see the neurologist again in early Sept. He says he thinks it will be referral to a specialist after that.

We'd get no support as we have separate families, none of whom live near. My offspring are grown up and have their own lives and are great, but they's just be afraid for me and my H's family are "used up" with his father, who is in a home with Alzheimer's.

Thank you for your kind thoughts. It feels like I have swallowed a boulder, the weight of this is so extreme.

I'm sure your children would want to support you - just because they are grown up they are still yours!

It sounds like you may have a considerable amount of time before you know anything - you need to take one day at a time at this stage and see what happens.

I agree with the 'one day at a time' Tribpot. Some days will be tricky whilst you wait so it may be worthwhile making plans for how tomorrow can be a 'good' day.

I'm not being trite here - this has helped me a lot in the past. A lovely man I used to work with was religious (Sally Army) and when I was going through medical stuff, he used to say 'Sufficient unto the day is the evil thereof'. I had to make him explain it to me but those are the words I remember when I need them. They've stuck with me for 30 years so they must be worth having!

You poor thing.

A friend's mum was diagnosed with this in her late forties, over ten years ago although we suspect she had it for a couple of years previously but everybody put it down to her naturally scatty personality.

The first few years were OK, her husband took early retirement and they made the most of life with holiday's etc. She was on Aricept for a long while which helped until the Dr took her off it without consulting the family and she rapidly deteriorated unfortunately.

She entered hospital around 5 years ago due to quick progression of the illness, being relatively young with it, and that she had failed to recognise her 3 DCs and was getting more aggressive due to frustration. Sadly she has now lost the ability to speak or communicate at all and lives in a residential home where she is well looked after.

Her DCs have grieved for her already, she hasn't recognised them for years but they are glad they did as much as they could with her, when she was still able to enjoy things.

It's a cruel cruel disease - make the most of every day. My friend from the Alzheimer's society very helpful and supportive as well as social services.

My thoughts are with you

I've just reread the OPs post and I really hope it's something less serious that's causing the symptoms.

Nothing can change the outcome, distract yourself as much as possible until then

And while it is a horrible disease, medical advances are being made all the time.
Early diagnosis is key to getting it managed well.
There are now medications available that certainly won't cure it but can help in slowing down its advance.
My personal belief is that this is the worst bit.
The not knowing but suspecting.
Until you have a definite diagnosis you are unable to get things straight in your own mind.
Once you know one way or another, you will begin to formulate plans for how to manage the situation.
Wishing you and your DH good news.

I think the key here is that you have not yet seen a specialist. I used to work for the Alzheimer's Society and also ran a domicillary care service. However, you and your Husband must already have some concern for you to have quite rightly sought medical help and opinion.

There is mention on here of drugs available in the early stages of dementia. They can delay the progression of the illness by around two years, but not for much longer. The reality is that aricept, reminyl etc buy you time. Some people find them hard to cope with as there can be side effects. My mum refused to take hers which made me angry at the time, but you cannot force them on someone.

My mum had vascular dementia and sat the mini mental state examination a number of times. People can pass this whilst still having symptoms of dementia. The truth is that the high proportion of those "diagnosed" by specialists do have dementia but a true diagnosis can only be made post mortem on examination of the brain.

The person closest to him, which is you, will have a gut feeling. Trust your instincts. Please contact your local alzheimer's society - you can go in for a chat and they will let you have leaflets to take home. Some branches offer support in the home or at training sessions or drop in sessions.

I know what a very difficult time this is for you - I had to offer support and counselling whilst dealing with the reality of my own mother's deterioration. I wish you the best.

Really sorry you and your husband are going through this. Whatever the outcome of his tests, no matter how scary, you will somehow cope and somehow survive. I was diagnosed with a progressive neuromuscular condition a couple of years ago. It was awful and rocked our relationship but now we are feeling much better and coping well. You will find support in the most surprising of places.....and it's very reassuring and comforting to speak to others in a similar situation. Make use of counselling if you can and the charities often give very good support and advice. Good luck and hope for a good outcome from the results.

Ironically, I work for a neurological charity.

The Dr we are seeing now is a consultant neurologist, so we are much further along the road than the GP, for example.

I know exactly what dementia does. I know the effects of aricept. I even know what new drugs are in the pipeline. I can tell you all about AB 42.

At the moment, none of this helps. But thank you for listening and for your thoughts and suggestions. Just offloading anonymously helps. Thank you.

Then offfload away.

I don't know which is worse tbh- to know a lot or to know very little when facing a horrible thing like this.

How are you today?