8 weeks post diagnosis

[bepositive]

Hi everyone,
I have early onset alzheimers and was diagnosed 8 weeks ago. At first, after the initial shock, I seemed to take it in my stride. The hardest thing was telling my husband. We haven't told our adult children (I am 55- ok so I don't look it ). The elder's getting married in 6 months or so and I don't want the diagnosis to come in the way of making it full of wonderful memories.
Now the realisation has hit I have become tearful, withdrawn from friends and grieve for our future life. My days off are duvet days. My husband is in the angry stage and I'm afraid that the DIY's getting the brunt of his fustration.
I have been given Aricept which has taken away some of everyday bewilderment and have done all the practical things like contacting DVLA, Insurance Co, EPA's and Wills.
When, if ever will I be able to not have this in my head 24/7? This self pity HAS to end.

 

[chris53]

Hello bepositive, welcome to Talking Point, sad you have need for us, but glad you have joined us, so sorry this illness has invaded your life, it smacks you and family right between the eyes, disbelief, anger all sorts of emotions run through your head, my dear mum has joined this unique Alzheimers club, my mum in law was very supportive but now alas has Vascular Dementia, family and friends when they have got over the shock can be very supportive, you are after all the same person so we embrace any changes that happen, so pleased that Aricept is working for you and wish you better days in the weeks to come, many of our members here are in the same position as yourself and I am sure they will respond to your post. Keep in touch and best wishes - Chris x

 

[jeany123]

Hello bepositive welcome to TP you will find lots of help and support on here, my husband has vascular dementia, I am sure there will be people along soon who are in a similar position to you and who can give you advice

Best Wishes,
Jeany x

 

[bepositive]

Great to hear from you.

Thank you for your kind words and genuine encouragement. Only those that have been touched by it know it's effects and can talk from the heart. Very much appreciated.

Is it just me or do others find this web site confusing? It took me a good 5 minutes to access my post and another age to find the replies.

So ok it's me. Prob need to go on a computer course!!

 

[Sue J]

Bepositive - it's not you, it takes a while to find your way around website and get used to it but there is always someone to ask. I'm as yet undiagnosed but have had symptoms for three years now and I understand your struggle. You will get lots of support on here.
Best wishes
Sue

 

[FifiMo]

Hiya Bepositive,

What I do to find the threads that I am involved in is...I sign into Talking Point and at the top of the screen I click on Today's Posts. I then scroll down the list and the ones that I have been involved in have a big Green dot next to them, I just click on the thread then I can read what has been added. If you have been away for more than a day you can click on New Posts and it will give you a list of all the posts which have taken place since you last on here - yet again - look for the large green dot and they're the ones you're involved in.

Can I also say that I'm sorry that you have been diagnosed with AZ and it is understandable that you and your husband are having to cope with the enormity of this. The most insidious thing about AZ is that you don't know what the progression of the disease might be or how long it might take and sometimes it is as though you are in a heightened state of alert watching for any minor thing and wondering if it is some kind of sign. When my dad was diagnosed with cancer he had a very straight talking consultant. Some would say that she could have tempered her words with empathy or compassion but what she told him was the truth. She said that he had an illness the future of which he cannot control. She said there was no way of telling whether he would die tomorrow, next month, next year. She explained that what was important was not to sit back and waste time mourning the fact that he had this illness because he cannot change that. She said the illness was in control but that did not mean that he couldn't take back control of the things that mattered to him. She told him that every day he sat bemoaning his illness was a day wasted in doing something that would give him pleasure. She recommended that him and my mother sit down and write a list of things they want to do together. Said the list should then be broken down into what are they going to do in the next week, then the next month, then the next 3 months and so on. Then she told him to get off his butt and go deal with his list and not sit there worrying about what may or may not happen - she said she'd control the cancer stuff but he had to control his life. The pep talk did change both my parents. They were able to move on from the shock of the diagnosis to empowering themselves to go do the things they always wanted to do. They travelled, spent more time with their grandchildren, dad signed up for more bowls competitions than he had ever done before and right up until 2 weeks before he died he was out with his mates playing bowls in the rain.

I hope you don't think I am being trite in sharing this story with you but I thought it might be useful to you and your husband and might just empower you to take back the control that you can and not let days slip by being angry and upset and frustrated.

Hope this helps,

Fiona

 

[zeeeb]

Hi, and welcome to our group. Sorry to hear about the diagnosis. I hope the aricept starts to stabilise things a bit for you. My only suggestion would be to make sure you seek couselling / psychology services. It's a huge issue to work through, but being able to talk openly and freely about all the things you don't want to tell your friends and family will be invaluable.

Kristy

 

[Izzy]

Hi Bepositive. I'm so sorry to read of your diagnosis. It must be hard when you're so young. I have no doubt that you and your husband will go through a range of emotions. It's understandable.

Your Username is very apt. I think from what you are saying that I can hear you will do your best to be positive. It's good advice to make the most of every day you have. My husband was diagnosed over 11 years ago and we certainly do that. I also accept every bit of help that is available. To begin with we didn't really need much but my husband did have a CPN (community psychiatric nurse) he could talk with in the early days. That helped him a lot. We now make use of the services of Alzheimer's Scotland. I hope you will gradually accept any help which is out there.

The fact sheets on the Alzheimer's Organisation site are very helpful and you might want to dip into these:

http://www.alzheimers.org.uk/factsheets

If you haven't contacted your local organisation it might be helpful to find out what they can do to help:
http://www.alzheimers.org.uk/site/scripts/documents.php?categoryID=200121

Anyway I've rambled on enough. Please keep using this site you will find lots of people here who will help and support you. Wishing you well for your daughter's wedding and fit the days and weeks to come. Take care. x

 

[jeany123]

Hi again if you want to find your threads quickly just click on your user name at the top and down the left side is a list of

Send Private Message
Find all posts
Find all started threads
View Blog Entries

you click on, find all started threads and all your threads will come up and you can chose which one you want then click on them, then if you scroll down the replies to your post will be there,
If you want to see your posts on other peoples threads you click on find all posts,

I hope this helps
Jeany x

 

[sue38]

Hi welcome from me too.

Is it just me or do others find this web site confusing? It took me a good 5 minutes to access my post and another age to find the replies.

Have a look at the Help Videos which might help.

 

[bepositive]

A reply to all you lovely people

I haven't sussed how to reply to individuals yet so please bare with me.
What a great lot of people you all are. Sooo caring, supportive and informative. Your compassion to a stranger is humbling. Thank you.
I have insight into this illness as I am in a profession that cares for those with moderate to severe dementia. I know that no 2 people are affected the same. I want to maintain my dignity as , I hope , I have allowed those in my care.
I have been given a week's sick leave by my GP so hopefully I can recharge my batteries and be as my name suggests- positive.
Once again, many thanks all you wonderful people.

 

[jaychemist]

Use the time well

I was also diagnosed with Alzheimer's recently. It made me realize (US, sorry) how much I based my self-esteem on my intellect. A book I found very helpful was Quiet Alice, about a woman your age who is diagnosed with Alzheimer's. She struggles with all the things she has to lay aside, but learns to bond with her daughters and grandchild. I try to see what is positive each day and to see what I can to do strengthen relationships, think about what my wife and I would enjoy, and do it.

 

[Bodensee]

hello bepositive,
I am so sorry to read that you have this disease at such a young age only 55 years, can you seek advice as to what trials are available for new drugs/vaccines that may help you, your local mental health team and neurologist should be able to advise you about current trials in the UK. Are there any more tests that can be done to understand why you have developed this disease, have they given you answers as to what are the likely causes. It just seems that dementia is becoming more common in this age group and the experts dont have a clue why this is.

 

[Teri]

Thank you jaychemist for the reference to Still Alice. I have just downloaded it to my iPhone and can hardly put it down. Her initial experiences are chillingly similar to mine! I'm also afraid to put it down because
A- I'm not certain when I will remember to read it again
B- I'm worried about how much I will need to reread in order to pick up again
C- I'm afraid the book will become too complex and I will get confused

I miss reading terribly! I can read a complex article or essay, but later haven't a clue. The neuropsychologist testing me, explains various brain functions. At the time, I understand (I studied psychology before teaching). After my appointment, I can't tell my daughter what we discussed.

Anyway, my point was to say thank you. I see there is a sequel to the book

 

[creativesarah]

Still Alice is a book I would recommend to anyone to read My GP found it really helpful too - we do book reviews but she has to write it down for me to remember

I do get a bit lost with reading but I am trying to keep as much going as possible

The consultant told me to have a tablespoon of codliver oil every night

totally yukky but I do think it helps a bit!