Nervous and new.

jude1950

Registered User
Mar 23, 2006
182
0
Lincolnshire
Hello everybody, I hope you don't mind me joining the group. My partner has yet to be diagnosed with dementia but I am sure he is getting worse.
He is 70years old and has always been very fit and never looked his age.Always been a little eccentric but very witty and popular. About two years ago he was complaining of headaches and underwent various tests for chronic sinusitis. He has increasingly become more of a hypocondriac at first I used to laugh it off but he only had to see a newspaper article about an illness and he would think he had got it! He also started to have problems with short term memory and would often be quite nasty and accuse me of not telling him something even if we had discussed it at length. I did ask him to mention this to his GP .but when he did the reply was "Don't worry about it I have got a test for it somewhere but I have forgotten where it is. ha ha. "I would add they have known each other for a long time. Eventually he saw a ENT specialist who said that there was no problem with his sinuses but would refer him to a neurologist. By this time James couldnt concentrate long enough to do his crossword puzzles or read a newspaper he also is an accomplished artist but can no longer paint. The neurologist was about to send us away saying that the headaches were nothing serious when I had a quiet word about the memory problems. He orgavnised a scan and the result showed there had been a slight stroke that affected the front part of his brain. This would cause the short term memory problems and could get better.. Twelve months later things are much worse he doesnt like me leaving him, if I go out for an hour he thinks I have been out all day. He is constantly losing things and searches drawers etc the place looks like a bomb site when he has finished. He puts things in the wrong places and then denies he has done so he is easily upset and gets nasty. Most of all he denies there is anything wrong.
I have now been to seehis GP and persuaded him to refer James fo a Psychiatrist for older people for an assesment this is happening on 28th March. I hope something can be sorted I love him dearly but he needs help I just want the nice James back...if they say there is nothing wrong I think I shall scream.
Sorry it is such a ramble I just need to let off steam
 

noelphobic

Registered User
Feb 24, 2006
3,452
0
Liverpool
Dearth said:
I'm sure you'll be okay here... we're a friendly bunch!
:)

N.

You speak for yourself, Neil!

No, seriously, Jude, I hope you get some answers on the 28th March and I am sure you will find it helpful to be here, I certainly have.:)
 

jude1950

Registered User
Mar 23, 2006
182
0
Lincolnshire
Thankyou. I think I have posted in the wrong forum ....sorry about that!
The appointment cannot come soon enough.. another bad day today James has been "at me" all morning. We are due to take my mother out for Mothers day this afternoon I am wishing we hadn,t arranged anything I shall be on edge all the time in case he starts acting up whilst we are out.
 

Brucie

Registered User
Jan 31, 2004
12,413
0
near London
As you suggested I've shifted this thread into a section where you should receive more replies!

Best wishes
 

Rosalind

Registered User
Jul 2, 2005
203
0
Wiltshire
Hello Jude
I am guessing the 1950 is your year of birth, in which case you more or less match me, born 1949, with a husband with vascular dementia now aged 73.
I suggest that you take very careful note of all the things that James is doing that worry you, and make sure anyone doing an examination is given this list. My husband is good at 'presenting' well, 'No no, there is nothing wrong with me' and then being very weird when we are on our own, not to mention losing all social skills when in company. For some reason all this year he has been telling people that if you go to Northern Australia there is 'nothing there'. He has not been to Australia for at least 30 years, and then was only there for a few days, and these pronouncements have never been during conversations about Australia, much of the puzzlement of those he is talking to.
I recognise the not being able to find things, putting things in odd places, and the bouts of nastiness.
Coming to terms with how things are, compared to how they were, is one of the hardest bits. At the moment you probably don't even want to think about it, but when you can, make sure you ask about every possible area of help available. While you a battling on by yourself you may not be told about allowances, local sources of help etc.
You will find Talking Point a great help - although reading about what other people are going through further down the line can make you want to cut your throat from ear to ear, and personally I find the total selflessness of some other carers makes me feel I am selfish and self pitying.
Rosalind
 

Margarita

Registered User
Feb 17, 2006
10,824
0
london
Hi jude Welcome I Joined not long ago & it seem like years :) TP been a great source of information & support for me & am sure it will be for you. my mother is 76 & has AD . It does sound like your husband is on the first stage of the on set of dementia (hope I have worded that right).

All the best for Mother day with your Mother
 

Tender Face

Account Closed
Mar 14, 2006
5,379
0
NW England
Hi, Jude!

I know that feeling of 'new and nervous'. It took me a while to 'bite the bullet' and decide to register, after 'dipping in' on an anonymous basis for weeks before - but how glad I am.

If I am honest, I felt like I was 'infiltrating' some established group.. then realised that support groups evolve - just like life - and each new member brings something new..... the help I have received over a matter of weeks is unbelievable! Sometimes just reading a post which makes me think 'Oh, goodness, it's not just me then!' helps so much!

I feel everyone is here to help - no-one of us can be in exactly the same situation as another - but we are here because we want to help our loved ones - and indeed ourselves, and when the moment is right maybe to reach out to others and help them too.

Brucie was great 'moving' your post - not because it was 'wrong' - just he had your best interests at heart - he was great when he explained to me how to log in properly!!!!! Only one small example of the support I have found here! Surely no-one is here to criticise - but to offer support in whatever way they can from their own personal experiences.

I feel the best thing I have done in recent weeks for 'mum' is to join this group - she knows nothing of it, but it is helping me to find the support I need for myself, which indirectly means I am far better equipped to support her.

Well done, you, for getting over the nerves! And thank you for your honesty. We are in different situations, but I saw a lot of myself in you!

Look forward to hearing your up-date!

Tender Face
 

daughter

Registered User
Mar 16, 2005
824
0
Hi Jude, I recognise a lot of your husband's behaviours from a few years back with my Dad. My Mum had to cope with him putting things in wrong places and the nastiness, and also that feeling of always being on edge, I know it was a very difficult time for her. I hope you will let us know how the assesment goes.
 

DaisyMay

Registered User
Mar 25, 2006
1
0
Nervous and new too

Hello Jude,
This is my first visit here too, so hello to everyone. I have been reading your messages to each other on here and feel an overwhelming sadness, but a great deal of love and support comes through every message and reply. So thank you. What an amazing bunch you are.

My husband John (59) is newly diagnosed with AD (last Friday) and is also very good at presenting a front to others. 'No I'm fine thanks, just a bit of a headache; etc etc
It took me 2 and a half years to convince the medicos there was something seriously wrong with him, because of this.
Recently my own doctor (same practice) laughingly told me that they thought he was putting it on at the beginning, so I am sure that explains the delay in getting specialist appointments.
I just kept repeating the list of problems and got each doctor that we saw, to explain, in their opinion, the reason for each one. They got really fed up with me, but I knew there was something wrong. So my advice would be, just politely repeat yourself until they listen and then refer you.

Good luck for the 28th. and don't worry, I found that everyone concerned was exceptionally kind and understanding.
Although it is a shock when they actually put into words what you already know in your heart of hearts, there is relief too, because finally, you have an actual diagnosis.

Take care
DaisyMay
 

mocha

Registered User
Feb 17, 2006
176
0
89
Lancs, England
Mocha

Hello Jude, I was just like you 4yrs ago. I had been telling our GP for 18mths that I thought there was something wrong and in the end asked for a private visit from the physciatrist. When he gave my husband some memory questions, I couldn't believe my ears. Ron couldn't tell the time or fill in a clock face , he didn't know the day-month-or year. Things you don't think of discussing between yourselves. If possible you really need to try and join a local Alzheimer's carer's group. I hate it if I have to miss a monthly meeting and have made a lot of new friends. I could go on and on. Best of luck on the 28th
 

Linda Mc

Registered User
Jul 3, 2005
1,879
0
Nr Mold
WELCOME! You couldn't have come to a better place for support.

Read the posts often you learn so much and it really helps.

Linda
 

BeckyJan

Registered User
Nov 28, 2005
18,971
0
Derbyshire
Hi I agree with Mocha - have sent you a private message. You will get a lot of support if you accept it - you do need it Best wishes BeckyJan
 

DickG

Registered User
Feb 26, 2006
558
0
88
Stow-on-the-Wold
Hi Jude & DaisyMay

Welcome. You will receive as much as you give with TP. "presenting well" seems to be the most common theme and certainly is true with Mary and doesn't it make you feel stupid.

Just because your loved one presents well doesn't mean that your instincts are wrong, you are the one with the true picture.

Hugs

Dick
 

Nutty Nan

Registered User
Nov 2, 2003
801
0
Buckinghamshire
Hello Jude, and welcome!
It seems to me that there are several of 'us' on TP: younger wives caring for older hubbies with AD. I am 55, my husband 20 years older, and your description of 'symptoms' mirrors ours a few years back. Finding and joining TP was one of the best things for me, support as and when I need it, either by nodding while reading other people's posts, or by asking questions myself. Everyone's situation is individual, yet the similarities of our worries and experiences brings us all together and makes the burden a little lighter.
This is the only place where nobody gets embarrassed or bored with the all-absorbing topic of AD! - And some of the jokes are not bad, either .... :D
 

jude1950

Registered User
Mar 23, 2006
182
0
Lincolnshire
First of all thanks to Brucie for putting me in the right forum. Thankyou to all that have replied . I sometimes think Its me that has the problem not James! I am as some of you correctly guessed 14 years younger than James and we have been together for 9 years now and lived together for six years. I have been looking in on this site for a while now and have finally taken the plunge and joined. We both have grown up children from previous marriages...James family are not as close to him as I am to my Children, I cannot ask his family for support I do have contact with them but they tend to have their heads in the sand so to speak and they are quite content to leave us to it. My family are close to both of us and think a lot of James they have noticed a decline and my youngest daughter was the one that pushed me into getting an assesment done, she worked in geriatric medicine for a long while before specialising in Renal nursing and recognised the signs that something was wrong. I have to be careful how much I tell my children as they worry for me I have Rheumatoid arthritis, angina and high blood pressure they worry for the future and the impact it is having on my health. I don't want to contemplate the thought of not being able to cope with James illness I am hoping there will be something like arricept to help him. Thankyou to those who have sent me a private email I shall be replying in due course I can only get to the computer when James is asleep.
 

Kathleen

Registered User
Mar 12, 2005
639
0
69
West Sussex
Hello Jude

This site has been a godsend to me, I can let off steam when I need to, have a laugh or cry at other posts and all in the comfort of my own home.

One comment about being careful what you tell your children, as the daughter of a 74 year old AD sufferer and a mother to three grown up children and a 7 year old, I have found that it is best to be absolutely open with the eldest ones with regard to my Mum's condition.

They worried more when I thought I was protecting them by making light of everything and imagined things were far worse than they really were.

My Mum and late Dad were like second parents to my children and, as adults, my girls are united in being as involved as they can with all aspects of her care etc.

The experience of coping with a person with AD changes the dynamic of relationships not only with the sufferer, but the rest of the family and friends too.

Some turn tail and disappear, but those who stay seem, in our case, to form an unbreakable bond, I hope it will remain that way always.

Kathleen
 

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