Unsure what to expect!

[DMWalker]

Hi, it's quite a while since I visited TP, I gave up work at Christmas to spend more time with my husband who was diagnosed with AD a year ago. He is 66, I am 58.

When I worked he was phoning me all the time asking where things were in the house and generally panicking over the smallest problem. I was constantly worried about him. His last memory test was better that the previous one.

Now I'm at home he seems fine, we have the odd argument when he forgets that I'm looking after our grandson at our home on certain days, he seems to want my to himself all the time. I work voluntary in a shop one morning a week.

I know his memory is not too good, he is always misplacing things and he cannot do tasks in the house like he used to, he's quite happy to let me do them, he is also getting stubborn.

Can anyone tell me how long he might stay like this, I am always wondering if he could be like this for the next few years, I worry about the future but sometimes cannot imagine him getting any worse. Does it creep on gradually? I know all cases are different, maybe he is slowly getting worse but I don't notice.

Isn't this a terrible illness, I can't imagine what my husband must be thinking, he is quite upbeat most of he time so we don't talk about it.

Dee

 

[Áine]

I know all cases are different

Hello Dee

I think you're probably answering your own question here. Not knowing what to expect is one of the most difficult things I think. My dad deteriorated very rapidly, though he was 20 years older than your husband. His consultant said something to the effect that because it had started very rapidly she expected it to continue to progress rapidly. I don't know if the opposite necessarily follows. Stay around, someone else will probably know more ...

 

[Skye]

Hi Dee

Yes, all cases are different. My husband was diagosed at the age of 67, and seven years later is still relatively well, though his speech and language have gone. His deterioration has been very slow, apart fron last year, when he had a virus and declined sharply. But he has picked up again, not quite to where he was before, but almost. I didn't expect this.

So as Áine says, we none of us know what to expect.

Sorry not to be of more help.

Post again, and let us know how it goes.

 

[connie]

Hi Dee, can only give you our experience.

Lionel was diagnosed 5 years ago, aged 60. First couple of years, although the learning curve about the desease was sharp, condition held fairly stable, and we continued to be able to do so many things.

Third year the deteriation was more noticeable, but still manageable.
Years four was very hard, and year five was when his mobility went to the point where he needed more help than one person was able to give.

Start of year six, he has been in a care home for the past three months.

Only one persons journey of course, everyone is an individual.

Just enjoy the day! Regards,

 

[DMWalker]

Thank you so much for your replies.

My husband is going into hospital in March to have a fairly lengthy operation, last year his specialist told me to be aware that if he ever has to go in to hospital it could set him back, he was in hospital 2 years ago when his problems came to light.

I'm keeping my fingers crossed that all will be well, it's good to hear that the disease could be very slow in progressing.

Thank you once again for sharing your experiences

 

[Grannie G]

Hello Dee, My husband is 74, and was diagnosed in 2005 even though I had grave concerns probably 2 years before diagnosis.

In 2002 we moved house to be nearer our son. I did the school run 3 days a week for our DIL and had the 3 children during school holidays. This arrangement only lasted 1 year as my husband became very demanding and resentful of the time I spent away from him.

He too would phone me when I was at our son`s house, asking where things were. But he wouldn`t come too, although there was nothing to stop him and I tried to encourage him.

He complained the children were too noisy, he didn`t feel comfortable at our sons house. He complained every morning when I had to get up to take them to school, and complained every evening about the following day.

In the end I had to stay at home with him. Once I was at home he seemed fine, so much so that I was a bit resentful that he`d been so demanding.

If our son visits, he`s OK. But if our son brings the children round he groans before I answer the door, greets the children and smiles, then switches off and doesn`t join in any of the chat. He seems able to converse 1 to 1 but finds it impossible in a group.

So many of his behaviours seem comparable to those of your husband.

I can`t give you a time scale but there are times when I feel my husband has reached a plateau, like the good days we have had during the last few weeks, then he will suddenly seem to deteriorate, as he has during the last two days. What will happen in the following days or weeks is anybody`s guess. i just need to play it by ear.

Sorry not to be of more help. I identified with you as soon as I read your post but whether you identify with me, remains to be seen.

Keep in touch, Sylvia x

Now I don`t leave him for more than an hour, and haven`t done for the past year.

 

[DMWalker]

Thank you Sylvia for your reply, yes I do identify with the problems you have had, very much so.

Over the past months your problems have been just ahead of what I am going through, I am amazed at how similar they are, I believe you once answered my posting when my husband had cut down all my daughters trees in her garden while she was on holiday, or was it when he put wrong coloured doors on my little car when there was no need. Thinking about it, it was when I had concerns over my husband driving, thankfully he no longer insists on driving now although he does like to drive, that's one issue that seems to be sorted.

I will watch your postings with great interest, thank you again.

Dee

 

[Grannie G]

Hi Dee, I have no knowledge of your husband cutting the trees down or putting the wrong doors on your car.
I do remember you worrying about his driving, and now you say he isn`t so bothered about it. This is what seems to happen. The driving was the trauma of my life and I can`t believe my husband never mentions it now. He last drove in November 2005, but he fell and broke his arm and, cruel as it may sound, that solved my problem. Once his arm healed, he had lost his confidence.
He used to be a very good cook. Now he no longer cooks. His organizational skills have gone. He still puts dishes away, and vacs. That`s all.
Sylvia

 

[jude1950]

HI Sylvia & Dee,

Just wanted to say how similar both your husbands are to mine. he was diagnosed one year ago but there had been problems two years before then.
The part about being possessive realy struck home...even if the children telephone to see how we are he grumbles and moans that they are taking up His time with me and complains loudly whist I am talking on the phone to them.
There are times when I would love a couple of hours to myself but I cannot leave him on his own for such a long time he will panic that something has happened to me or he will have turned the house into a mess looking for something that he suddenly thinks he has lost disrupting all the cupboards & drawers so I have to sort them all out again...worse still he will decide to have a sorting session & destroy important documents!
No one knows when this journey will end but theres one thing for sure it is never boring.
regards Judith

 

[Nebiroth]

It is impossible to say since every case is individual. In general, Alzheimers is a progressive disease, so you might expect a relatively gradual decline over a period of about ten years. Often the changes will be so gradual that the carer does not notice them, but someone who has not seen the person for a year would see them right away.

However, in some people the progression is faster, others slower than this. There may also be times of little change followed by a deterioration. Or even an improvement, although sadly the trend will always be a decline.

It is also possible that along with the general decline in ability other symptoms may surface, such as behavioral changes - in the case of my Dad for example, he has developed quite severe symptoms of paranoia and aggression.

But other people do not do this at all.

One of the most dreadful things about this awful illness is that - aside from helplessly looking at a loved one decline - is that no one can tell you exactly what will happen, or when, except in the most generalised of terms.

 

[Gill W]

Hi,

I can quite confidently say that my Gran has degenerated rapidly since diagnosis. Whether its mind over matter or not I don't know but she has gone from quite bad to very bad in just over 12 months.

She was diagnosed officially December 2005, when she was still capable of stringing a sentence together that made reasonable sense. Now she can barely put 2 words together that make sense. That's if she can remember what the conversation was about that she wants to contribute to.

She has lost continence progressively, (we're finding incontinence pads all over the house now, put down when changed & she's forgotten to put them in the bin). Gran has even gone downhill in the sense of hygiene etc, she'll swear she's had a bath but we know for a fact she hasn't.

She can hardly remember who is who amongst us all, & is a lot more argumentative now than she ever was. She'll fight her corner like a raging bull sometimes & she used to be one of the most tranquil people in my life.

Mum had someone say to her recently that she should really say Goodbye to her mum as she knows her, as she'll never be the person she was again. We are all praying that her life comes to a natural end before she succumbs to this god-awful disease totally. She doesn't ail a thing apart from this horrific disease, she bounced back from a hysterectomy at the age of 81, has absolutely no other illnesses or conditions, yet her mind is the one thing that had to affected.

I wish you strength to get through your coming difficulties, hanging on to your patience can be so difficult at times. I just try to remind myself & my mum that it isn't Gran in there any more, she doesn't mean the things she says & she doesn't even know she's doing it. I know in my heart that Gran would be truly mortified if she knew that she'd ever hurt anyone's feelings with something she said or did.

Stay strong. And good luck.
Gill
X

 

[Margarita]

when my husband had cut down all my daughters trees in her garden while she was on holiday,

I remember when someone posted that , Hi ( is that you I am thinking) that was a while back sometime last year .

I have been caring contently for my mother since 2002 , mum lost all her cooking washing skills by 2003 and lost her social skill in going to the toilet both ends and could not by then make tea , by 2003 she got medication it brought back her communication skills back , toilet skills but not the ability to care for her self I give up full time work in 2004 , to care for her full time , during 2002 2004 she was living with me without my teenagers in Gibraltar .

They did irritate her and had lots of arguments , but they new it was down to her AZ , when I brought her back to England to live with myself and my children , but buy 2005 she got use to them , all of us liveing together

Now 2007 my mother mobility is going she needs a Zimmer frame gets very confused when in conversation with a group of us talking to her, but is ok with a one to one talk and get confused if I talk to her from a distant, she go to the toilet by herself, but needs help with pulling up her trouser , washing , dressing . still no what she like to wear , I give her a choice of only 2 things as if I ask her what she wants to wear she gets confused .

She still go to day centre , when not at day centre I can not leave house unless someone in house , she does not wonder outside , just does not being left on her own in house , if I I have to pop out to shop and no one in I do but don’t do it often . Just in case she forgets and go looking for me , that’s not happen yet as I reassure her I’ll be back soon , but since 2 weeks a go I don’t do that anymore .

 

[DMWalker]

It was last August when my husband cut down (or up) my daughter's conifers in her beautiful garden the day after she went away on holiday, I was at work.

My daughter had said that she wanted the tops cutting as they were taller than the house, she asked him not to touch them as she worried for his safety. He phoned me at work to say he was having a break from pruning the trees. I rushed to my daughter's house to find all the branches from 15 tall conifers cut from the bottom up to about 7 foot, they looked like lollipops!! This was the first time I wondered if it could be AD which caused him to do it. In tears I rang the support worker who said it probably was and not to be angry.

My husband has since done similar devastating things which have cost me a lot of money, but at least now I am at home I can keep an eye on him. We never talk about his escapades at the time, when I feel I can ask him why he has done something he always says he doesn't know.

Anyone meeting my husband would not realise there was anything wrong with him unless they spent quite some time with him. This is what I feel makes it so personal, he doesn't appear to have any genuine affection for me anymore, I still get lovely cards from him so I have to keep reminding myself this isn't the husband I once knew. How I miss him!!