New to tp - any one out there?

jaffa

Registered User
Aug 19, 2006
6
67
Peterborough, Cambs
Hello, i'm Jean (53),

I care for my husband Keith who is 57 and has had alzheimers for 2 years.

It can be very emotional and upsetting and I would love to make contact with anyone who is about my age in the same situation.

keith scores about 12 on his test at the hospital now, and is on arricept although for how much longer I don't know.

He can still talk often with difficulty, however he cant really follow a conversation or enjoy the tv anymore. He is going down hill physically a lot now and can only go for walks. He sulks some of the time and even the tiniest thing will set him off.

I don't know how i get through it sometimes.
 

Grandaughter 1

Registered User
Jan 17, 2006
141
Hampshire
Hi Jean

I'm not your age but thought I'd say Hello.

My Grandad has Alzheimers and has gone to his 1st spell of respite today to give Nan a break as she has been really struggling lately.

I can appreciate what an emotional journey you are on as it's hard work.

Louise
 

Kathleen

Registered User
Mar 12, 2005
639
65
West Sussex
Hello Jean

I am about you age and just back from visiting Mum who is in an EMI home, she has had AD for at least 6 years, lovely visit as she has got the giggles today, no idea why as her speech is poor now, but comforting to see her happy.

There are others with spouses on this site, you are not alone any more, I have found this site a lifeline at times.

Have you family or friends who help you out at all?

Kathleen
 

BeckyJan

Registered User
Nov 28, 2005
18,972
Derbyshire
Hello Jean - I just saw your post. We are not really similar but the emotions will all be much the same. You are so young and your husband has gone down quickly - I am so sorry. I am 66 (used to be young for my age) - and so did David who is now 77. I think he has had Alz for some 6/10 years although it was confirmed 3 yrs ago at which point he had a stroke. So maybe he has both Alz and VascD. David scored 23 on his assessment which did not make sense (although the assessor did answr some of the questions for him and I suspect she counted those in - quite ridiculous). Also he has no problem with the number questions or the spelling but he does have difficulty in finding the toilet or bathroom - but these are not assessed.

So his memory is appaulling and mobility is very poor now. It is dreadful but we do allow for the fact that he had reached a good age before all this started.

I am sure you will get support on TP - I seem to post when at my worst - some comfort in just expressing thoughts to people who understand. Best wishes BeckyJan
 

jaffa

Registered User
Aug 19, 2006
6
67
Peterborough, Cambs
Thanks Kathleen and Louise

Thank you for replying to my first email!

I have two daughters, one who lives away in Norwich (she has two small sons - lovely grandchildren who my husband can't really enjoy) and my other daughter is with me now helping me to 'learn' the internet!!

She is ill herself and looks after her husband too, and I have lots of family around me although since Keith has been diagnosed with AD they seem to have dropped us which has upset me greatly. I am also trying to recover from a bad operation myself and nearly passed away last christmas. Times have been really tough lately.
 

jaffa

Registered User
Aug 19, 2006
6
67
Peterborough, Cambs
Nice to hear from you BeckyJan

I think you are right - I will use it most when I am down and lonely, (and at night when Keiths in bed).

It is a great comfort to know you are all out there. I can't believe that the consultant answered some questions for your husband, bless him. does he sulk at all or get aggressive?
 

BeckyJan

Registered User
Nov 28, 2005
18,972
Derbyshire
Hello again. No David at present does not seem too aggressive or sulky. He did go through a bad patch way before he was diagnosed - I really thought our marriage was about to break as he seemed so bad tempered and difficult with me. Now I know it was probably a phase of the Alz clocking in. When I went to visit our newly born grandson two years ago in Birmingham (having made arrangements for sitter etc) - on my return he accused me of having an affair although I had just shown him the photographs I had taken.

I think these mood swings do vary both from person to person and during different phases and no two people seems the same. I dont think he sulks but he does go into deep depression and frustration with himself. If he gets short tempered I just walk away from it - that seems to work.

You say your husband is in hospital - is that for a long stay? David has been at home all the time even with the stroke.

I am pleased you have people around you (it is surprising how many friends fall away but also how many come up trumps too). Have you had contact with your local Alz Society Group. Ours are excellent and we have made friends in the same situation as ourselves. So it may be worth a try for you too.

Take care Beckyjan
 

jaffa

Registered User
Aug 19, 2006
6
67
Peterborough, Cambs
No he isnt in hospital - sorry Beckyjan, I meant I was in hospital for 8 weeks myself recently - gall bladder removal that went wrong.

My daughter tried to care for herself, her husband and Keith, also coming to see me nearly every day in hospital.

Now its really just me and Keith, although my daughter still does what she can.:)
 

Amy

Registered User
Jan 4, 2006
3,453
Hiya Jean,
Welcome to TP - you can see what a great place it is - people in a similar boat, and always someone ready to talk, or listen. You will find that there are lots of people who come on line about 10pm, when spouses are in bed, or they are in from work.
Looking forward to geting to know you.
Best wishes,
Helen
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,347
Kent
Hi Jean

Welcome to Talking Point.

I have only been using TP since April this year but have found so much comfort from it, I can`t imagine life without it.

I am 64 and my husband is 74. He was only diagnosed last year, but I think AD has been coming on for 4 years at least.

It`s been very difficult coping with the mood swings, the tempers, mis-understandings and anger. As well as all that, I`ve had to watch the slow deterioration in physical, as well as mental health. I also feel I lost a partner, because we no longer share the worries and responsibilities, they are all down to me.

After lots of trials of Alzheimer medication and anti-depressants and experiencing the A-Z of side effects, we now seem to have hit the Jackpot. My husband has had to scrap all the Alzheimer drugs and is just being helped by an anti-depressant that finally agrees with him. How long he will benefit remains to be seen, but we`ll make the most of it while it lasts.

If Keith`s moods get too hard to cope with , don`t hesitate to go back to your GP to ask if there`s any more he can do to help you. Only when your GP says there is nothing more s/he can do, do you stop asking.

It`s good you are supported by some of your family, but a shame about the ones who are cooling off. Some people just can`t cope with illness, unless it happens to them, then they have no option.

Try to keep your strength up. Your friend at TP are behind you.

Kindest regards Grannie G
 

linda a

Registered User
Jun 13, 2006
48
suffolk
Im your age

Hi im 53 and my husband will be 70 this year he has lewy body dementia
He was diagnosed Jan this year i find its like a roller coster ride all ups and downs nothing constant we have a 17 year old daughter
Linda a
 

Norman

Registered User
Oct 9, 2003
4,348
Birmingham Hades
Hi Jaffa
welcome to TP,you will find we are like a big family,we don't vanish or walk away,we do our best to help and support each other.
You will find that there are lots of people who come on line about 10pm, when spouses are in bed,
Thats me for one!!
I have lots of family around me although since Keith has been diagnosed with AD they seem to have dropped us which has upset me greatly.
Don't worry about this ,it is a usual happening,I have found for the ones that vanished,some new friends come on the scene.
Regarding being down and lonely,you need not be now,we are here for you,your TP family.
Norman
 

intensityp

Registered User
Aug 16, 2006
24
hi jaffa

new to this myself... my mum is 57 and cares for my dad 69.. he is in later stages of AD, she has not got a clue about the internet and I was worried about showing her this site because of the first message i posted on here, but i can bypass that and maybe she can seek comfort and advice speaking to carers of a similar age... she will just have to fight with my 9 year old and my 3 year old for acccess to the pc!
 

jaffa

Registered User
Aug 19, 2006
6
67
Peterborough, Cambs
getting worse

hi everyone i feel i'm in limbo keith generally as got worse then theres a ray of hope just as quick he does something and i'm back to square one up and down my emotions are all over the place:confused:
 

Skye

Registered User
Aug 29, 2006
17,000
SW Scotland
BeckyJan said:
. I am 66 (used to be young for my age) - and so did David who is now 77. BeckyJan
Hi Jean

Welcome to TP. I'm the same age as BeckyJan, and hate to see myself in the mirror. Stress does terrible things to you!

I can understand that your emotions are all over the place, Jean, I'm afraid it goes with the territory. No two days are alike and you go from happiness and optimism to the depths of despair, according to the mood swings of your partner. My husband John was diagnosed with AD six years ago, his speech and language are his main problem, although he's now deteriorating in other respects. It's a bumpy road, Jean, but stay in touch with TP, it' a wonderful place to get support, advice, sympathy, or just a place for a virtual cry or scream.

Take care,

Skye
 

BeckyJan

Registered User
Nov 28, 2005
18,972
Derbyshire
:(
i'm back to square one up and down my emotions are all over the place
Truly understand the ups and downs and many of us here will experience. I just try hard to make the most of the ups and I am surprised at the patience I have learned when we are on a 'down'.
Jaffa I think you said your husband could walk - there is a little bit of me that envies that as my David is hardly managing but a few steps. We are out to celebrate our wedding anniv. this evening and I have had to plan a pub restaurant which I know is not too difficult for him. (35! years and the sadness is I am not so sure we will make the 40! ) Cannot drink much as I shall be driving - but have got half a bottle of wine for our homecoming!!! May as well enjoy.

Hope you are ok Jaffa, keep posting. Beckyjan

PS Skye - sending you a PM as I have a question
 

Amy

Registered User
Jan 4, 2006
3,453
Hiya Becky Jan,
Enjoy your evening - your love should be celebrated!
Don't know about you BeckyJan, but AD or not, I would be the one driving!!
Happy Anniversary!
Love Helen
 

Skye

Registered User
Aug 29, 2006
17,000
SW Scotland
Hi Jan

Just to say happy anniversary. Hope the party goes well. Answered your PM before I read this!

Hazel