Oddities and obsessions?

[C.Waring]

Since finding this site two weeks ago I have visited daily to read threads and although I have found comfort in reading from others in similar situations with this dreadful illness I also feel I have read of insight into some of the things infront of me.
Have other carers found a succession of weird and obsessive behaviours. With Jim earlier in the illness it was Keys, then it was socks, I would frequently find all the socks lined up on the bed and probably 2or 3 pair on his feet, then it was shaving to the point I thought he would have no face left, now it is coats he always has his coat on, yesterday two coats, a fleece and a walking jacket just to sit in the house and getting him to part company with them is nigh on impossible.
I also wonder about the drugs he has now been on aricept for over two years. I have read that after two years it probably has little effect and I some times wonder now if it is cruel to prolong this dreadful stage of semi awarness because those times when he is aware of his world falling apart cause him dreadful frustration and anger and I find that these are some of our saddest and hardest moments to deal with. I know that in two minutes he will have forgotten the outbursts but I am often left phsyically and emotionally drained.

 

[Brucie]

Jan walked around the house and garden with a glove on her left hand, the other hand bare. When she went into the care home I found she had saved neatly folded pieces of Andrex all over the place.

She wore contact lenses until the occasion she told me she was having problems with one eye, and I felt like a magician with a hat and rabbits as, one by one, I took lens after lens out - there were five in the one eye! [she used the disposable ones]

 

[Ruthie]

More obsessions!

Dear Carole

Oh yes! We've had:-

1. keys (losing, finding and fiddling with them until it drove me round the bend),
2. toilet paper - this obsession has been discussed at length (pun intended) previously on this forum - yards of it stuffed down the loo and in every available pocket,
3. cutting toenails and fingernails daily until they were down to the quick (I hid the scissors),
4. taking all clothes out of chest of drawers in the day and the middle of the night and "sorting them out" all over the bed,
5. trimming beard in patches down to the skin (I hid the scissors),
6. wearing two fleeces and a couple of coats and being resistant to removing them, even on very hot days,
7. sorting out pens, pencils and painting stuff and repacking them endlessly (my husband was an architect and was a good artist, so this was particularly sad to see - and he has a huge number of technical pens and pencils),
8. getting out of the house and wandering off, once for 36 hours. When I had the locks changed to Chubb locks my husband would constantly try to open the doors and would get very angry when he couldn't - he even broke strong brass door handles off. The thing that finally convinced me that I couldn't manage any longer was when he turned a gas tap on in the night and I woke to find the house full of gas. I believe that he thought it was a door handle. He still tries the (locked) door handles in the hospital ward each time he reaches them on his perambulations up and down the corridor.

Your posting has brought it all back to me - I'm sure there were more, but these are the things that have stuck in my head.

I wouldn't have believed it when it was going on, but I almost miss his obsessions now that he's no longer at home with me, but I know how hard it was to keep my patience at times when it was happening - I often had to walk out in to the garden and do some deep breathing, rain or shine, just to get away from it.

As to Aricept, I agree that the level of awareness which seems to be present with this is the hardest thing to deal with and we would both end up in tears quite frequently when my husband had moments of acute awareness of his situation. After 18 months on Aricept his condition seemed to be deteriorating much more quickly, and it felt as though the usefulness of Aricept no longer outweighed the distress caused to him by the awareness, so the Consultant took him off it 5 months ago. His condition has continued to deteriorate substantially since then, but I don't think that taking him off Aricept contributed to this - I believe it was happening anyway, and that the Aricept was no longer effective - but it's a tough decision.

Kind regards

Ruthie

 

[Brucie]

Hi Ruthie, you say " almost miss his obsessions now that he's no longer at home with me"

Yes, I thought that too when writing my posting in this thread - one does miss these things in a funny sort of way, and occasionally would willingly have them back with the person concerned, if that were possible.

One of the side effects of being a carer is that you can become as dependent on the person you are caring for as they are dependent on you. This leads to great confusions when they move into a care home and you are left to try and figure what happens next.

It took me almost two years to successfully cross that bridge.

What I never missed was the sundowning, that dreadful late afternoon time when I just waited for Jan to say "I'd better be going home now". In the early days she would wander out of the front door [we live off a single track country lane, so although traffic was a worry, at least it wasn't a main road] and I would spend an hour talking her back down the drive into the house. Later, she would open the door and shout "Help, he has gone mad" to our neighbours. I started to lock and bolt the door, but the best solution was simply to anticipate when it would happen and suddenly become thirsty, say to her "would you like a drink?" - she always would - and I would lace the drink with a tranquiliser. How I hated doing that.

 

[Ruthie]

Hello Bruce

Found your comment about the carer becoming dependent on the person they care for very interesting - I hadn't thought about it like that before, but of course it's true, as one identity is effectively defined by the role of carer, and I am beginning to wonder what's left now that phase is over.

It's almost as though the slate of my personality as it was before has been wiped clean over the last few years, and I think it is going to be a struggle to get some of it back. You said that it has taken you almost two years to cross that bridge, which at least gives me some hope that it may be possible.

I agree about not missing the sundowning. In our case we live on a fairly busy side road in a small country town, but half a mile up the road it turns into a country lane with no pavements and high banks, so there's no escaping the traffic. I had stronger locks put on the doors, but my husband would actually break off door handles and kick the doors when trying to get out, and he is a big strong man. I also used the cup of tea laced with sedative when the signs started appearing, as it was unlikely at that point that a tablet would have been taken willingly. Another sign of a change in personality for me - I wasn't devious before.

Best wishes

Ruthie

 

[Norman]

Bruce
my worst time is the sundowner,I dread it .
Every evening,well nearly every evening I wait for the "we are going home tomorrow".
I spend most of my days looking for things that are put in the wrong place,cleaning up after a sandwich has been made,remaking tea and coffee because they are cold, answering question after question. Cleaning ,washing,shoping etc etc,all these I can cope with but the going home is a killer.
I am now trying the answer "I am home" it seems to work at the moment but do we entertain a holiday this year?
Last year we returned home early my wife decided it was a hell hole and did not want to remain there any longer.
I am more fortunate than a great many. but what a nightmare this AD is
Norm

 

[Brucie]

Ah, holidays!

When I knew Jan was going to deteriorate, and before that happened, I tried to ensure that she enjoyed herself. We had always had good holidays [no children ever appeared] but I became worried on the one to Crete in 1998. I had booked a 5 star hotel and the trip cost more than 2 weeks in the Caribbean. In the taxi from Heraklion airport, Jan said "where am I?" and my heart sank.
At the hotel, she could never find her way to the room, and we had arguments over cutlery in the restaurant. Nevertheless, she enjoyed it, though it was no way a holiday for me.

For our very last holiday we returned to the Caribbean, to Barbados for the first time. Jan was mostly okay, though I had to take her to A&E with a torn contact lens in her eye.

I asked the holiday rep if she could ask Virgin to let us have a 3 seater on the plane on the way home, and when I explained Jan's problem she said "for goodness sake don't tell anyone - they won't let her fly, and by the way your holiday insurance is probably void!" We agreed the story would be that Jan was very nervous of flying. It worked and we had a good trip home. I knew we would never go again.

Norm, the sundowning will pass, but hell though it is, the first week that Jan was at the home I would willingly have taken her back, sundowning and all.

Two things I have learned in all of this nightmare:

- live for the minute
- never judge anyone

 

[C.Waring]

Holidays

Oh yes , now I've read replies to the oddities I realise there are so many others I hadn't thought of. As for holidays, I know they are over for us, last year we all went to stay with Jim's family in Canada it was busy with lots of family get togethers, in case it was Jims last visit. It was hard work and not relaxing and Jim did not recall any of it. Christmas was spent between both daughters homes this was so difficult and fraut I'm not sure if it will be repeated- we may try at Easter but I don't look forward to it. Jim spent yesterday a.m. worrying how he would get to work and then the afternoon how he would get home- he never went out all day! You're so right when you say this AD is hard. I just hope someone or some thing takes the decision out of my hands when it's time for the next stage of care

 

[Jennie Leech]

Oddities and obsessions

Ken hangs toilet paper out to dry!
Very inventive!
Jennie

 

[Norman]

oddities and obsessions

Hi everybody
we are still getting the dreaded sundowner!"
But in addition now is "what time are we going to bed"? "What time do we have to get up tomorrow"?
Then we wake at 6am and get the "is it time to get up"?
Also my wife is saying after being in this house for 37 years "What a nice room this is,"what a nice fire that is"and to cap it all "I could live here quite happily"
Paper hankies,I find them all over the house,but she is always asking do I have one?
Someone mentioned walking,my wife now is very unsure on her feet,needs to hold my arm and steps over lines and small steps.
Soldier on this is year 7 now, and at least I do still have her at home, although it becomes harder by the day.
I think I am to get some help from Crossroads begining of April.
best wishes to you all
Norm

 

[Norman]

oddities and obsessions(ps)

We are not early onset but are not the oddities the same for any age?
Norm

 

[Brucie]

Yes, the oddities are the same.

The difference with Early Onset is that the partner may have to hold down a job and have young-ish family.

On the other hand, it may be far less easy to cope with the physical demands, and things like driving, when the patient and carer are older. The frustration will be different.

Each type has its problems, over and above the condition itself.

Neither is easier, or harder than the other. Each is a huge personal challenge, and though there may be a common thread of experience, each individual family is just that - individual.

 

[Sam]

Oddeties and obsessions

I have just joined talking point - i feel so isolated, helpless and alone. How I can identify with you. The obsessions of this dreadful illness -I have experienced them too, socks, keys,(he locks me in, locks me out) shaving, folding tea towels, handky's, now it is ironing shirts -scorching hot.
It is the most dreadful illness and I agree totally, what is the point of aricept just to prolong this stage. I am sure my husband has a very poor quality of life. so much confusion. What are these pills doing? I would like to see help for him as he is - whatever that might be.
I am sorry I cannot offer anything useful, I wish I could. At least you are not alone
Sam

 

[Patrick]

Getting Better

Dear Brucie

Is it possible for patients with this disease to get better??? My lovely partner Jenny, who I have looked after for the past 6 years is showing signs of improvement, even her sister agrees with me that she appears to be improving.Gone is that haunted look, gone is the staring into space, she laughs at the simplest humourous situations, she repeatedly says how much she loves me and wants kisses and cuddles, she almost holds a conversation. She has become very loving towards me.
Oris it me thats changing??? I know that I thoroughly enjoy looking after her, even the unsavoury tasks, which we all have to undergo seem pleasing to me , probably because I get satisfaction from knowing she is clean and smelling nice and is comfortable. Is it her, or is it me.???

 

[Patrick]

Patrick

I have just joined talking point - i feel so isolated, helpless and alone. How I can identify with you. The obsessions of this dreadful illness -I have experienced them too, socks, keys,(he locks me in, locks me out) shaving, folding tea towels, handky's, now it is ironing shirts -scorching hot.
It is the most dreadful illness and I agree totally, what is the point of aricept just to prolong this stage. I am sure my husband has a very poor quality of life. so much confusion. What are these pills doing? I would like to see help for him as he is - whatever that might be.
I am sorry I cannot offer anything useful, I wish I could. At least you are not alone
Sam

Sam, my feelings are with you, these antics are just that, antics. The Isolation takes a long time to get over, in my case I have some good mates and supportive family but even so it still gets to a stage when you want to pull your hair out by the roots and scream. Unfortunatly we all experience what you are going through but if we keep together and talk about our problems with each other from time to time, I'm sure you will find things might just be bearable, I'ts good to talk.
Best wishes

Patrick

 

[Brucie]

Hi Sam and Patrick

Firstly, Sam....

What is the point of Aricept?

Good question and we must always do that - question medications.

The point is, as far as I am concerned, severalfold. Aricept does, for certain cases, prolong the time that a dementia sufferer retains more brain function. Don't they deserve that, or to try for that, at least? It also gives the carer reassurance that they have done everything possible for their loved one. My view is that, if Aricept [or one of the other medications] could have prolonged the normal working of Jan's brain for just a day, it would have been worth it.

Dementia is a progressive illness; it isn't in the long term, going to get better for the person who has it - I guess this answers Patrick's question as well. But there are cycles, and cycles within cycles, that mean that things may be better one day, worse the next, better for a long period before getting worse, bad for ages and then a sudden apparent improvement before getting worse again. Hence the mantra "day by day".

Aricept did nothing for Jan, neither did the other similar solutions. I guess she was too far gone by the time she was prescribed it. But I have the knowledge that we tried our best and - believe me - that is very important.

Patrick, the human body is a wonderful thing. In the early stages of dementia, the body appears to move brain function around from damaged areas to areas that may have previously been unused, and the brain learns to divert its functions. Later, as the damage spreads, these areas too, or the neural connections to them, become damaged, and they lose their function too.

There are ebbs and flows in the disease, but we also need to remember that when we look after someone long term, we adjust to their condition ...now. As such, if there is a slight remission it may seem major. But if we step back a couple of years and think how they were then, sometimes the change is still downward. It is a bit like the economists say, talking about the economy.... they say "inflation is not down, but the degree of rise in inflation is down".

All I would say is that if you have detected an improvement in Jenny, then grab hold of it and enjoy every moment, and help her to enjoy every moment too. Hate to say it, but it may not last.

I hope it does!

 

[Patrick]

Patrick

Hi Sam and Patrick

Firstly, Sam....

What is the point of Aricept?

Good question and we must always do that - question medications.

The point is, as far as I am concerned, severalfold. Aricept does, for certain cases, prolong the time that a dementia sufferer retains more brain function. Don't they deserve that, or to try for that, at least? It also gives the carer reassurance that they have done everything possible for their loved one. My view is that, if Aricept [or one of the other medications] could have prolonged the normal working of Jan's brain for just a day, it would have been worth it.

Dementia is a progressive illness; it isn't in the long term, going to get better for the person who has it - I guess this answers Patrick's question as well. But there are cycles, and cycles within cycles, that mean that things may be better one day, worse the next, better for a long period before getting worse, bad for ages and then a sudden apparent improvement before getting worse again. Hence the mantra "day by day".

Aricept did nothing for Jan, neither did the other similar solutions. I guess she was too far gone by the time she was prescribed it. But I have the knowledge that we tried our best and - believe me - that is very important.

Patrick, the human body is a wonderful thing. In the early stages of dementia, the body appears to move brain function around from damaged areas to areas that may have previously been unused, and the brain learns to divert its functions. Later, as the damage spreads, these areas too, or the neural connections to them, become damaged, and they lose their function too.

There are ebbs and flows in the disease, but we also need to remember that when we look after someone long term, we adjust to their condition ...now. As such, if there is a slight remission it may seem major. But if we step back a couple of years and think how they were then, sometimes the change is still downward. It is a bit like the economists say, talking about the economy.... they say "inflation is not down, but the degree of rise in inflation is down".

All I would say is that if you have detected an improvement in Jenny, then grab hold of it and enjoy every moment, and help her to enjoy every moment too. Hate to say it, but it may not last.

I hope it does!

Thank you Brucie for your prompt reply allbeit somewhat deflationary, however, the change in Jenny this past 6 - 8 months has been rather remarkable, to the extent that other people have commented on how well she looks and how well she appears to behave, she has a sense of humour and her dexterity appears better.
Jenny is the love of my life, perhaps I'm seeing things that are not there, but I must say life with her at the monent is more enjoyable than hitherto, so who am I to complain.
Once again, thanks for your time and I'll let you know of any further developments either way.

Patrick

 

[Norman]

Hi Sam and Patrick
Aricept? My Peg also the love of my life ,has been taking Aricept now for 7 years.
I know they don't work for everyone but my Peg is still with me ,most of the time.
Even now some days I wonder if she is better than she was,could they be wrong could she improve rather than stand still or deteriorate slowly.
In my heart of hearts I know this is not possible,and that this is the way the disease ebbs and flows,good days bad days.
We live each day,take every good day as a bonus,and try to ride out the bad days.
It is said that the benifits of Aricept cease after 2 years,it may for some,every case is different, I don't believe that,I am sure in my own mind that we still enjoy some life due to Aricept.
Best wishes
Norman

 

[Brucie]

Hi Patrick

sorry to be deflationary..... it is not like me, but I have found it better to be realistic with myself over Jan's condition. If I know the way things will go then I can seize on the better moments and together we can enjoy them to the full. Opportunities to do that are less frequent as time goes on, but then as Canadian Joanne has said "when you have see one case of Alzheimer's - you have seen one case of Alzheimer's". Each case will be slightly - or greatly - different.

 

[Michael E]

Rubbish

I have only just found this web site - makes me feel a little emotional when I read the other posts -

Monique is into rubbish - most of the day she wanders around collecting specs off he floor and grabbing the contents of the rubbish bins and putting them into one plastic bag that eventually ends up in the living room until bedtime...

She does not cook or shop or do any house work but there is a slight desire to do washing up which means lifting the items out of the water (still dirty) and putting them on the drainer... Trouble is my cooking is not the greatest and she has decided she hates spag bol - most red meats - She only wants ITV 1 on the television (we have sky so she can watch english tv as although she is French she will not have the local TV on. I have noticed that for the most part although the TV is on she really does not really watch it. Certainly does not know what any of the story lines are about except the Emmerdale one about the daughter poisoning her Father with medications - that made persuading her to take the Aricept interesting!!!! Stopped being able to read stuff - she can read a bit if I ask her to but now will not open a book or look at a newspaper.

Monique says she would like to live in London again - partlymainly as she is lonely here. Trouble is she will not go out. I think cos it is too challanging and partly cos I think she cannot be bothered. bit of a vicious circle. I really would not want to come back - climate and standard of living being so much higher here - not to mention the medical facilities which are excellent - because Monique has an illness of long duration all drugs and medical treatments connected with Alzimers are free of charge... Not quite sure what happens later on but I suspect the support is good.

I have just purchased a new (old) sailing boat in Plymouth and Monique has agreed to travel in it to the Meditrerranean this summer then back to here in La Rochelle. I think I will be able to get her there - Plymouth but not totally certain how it will all work out after that..... Two years ago she sailed from New Zealand to here with me - before I found out what the problem was - she did not participate in any way of course but was still good company - but then she could read and took more of an interest in things - the last 2 years have seen quite a drop off but nothing like some of the horrors posted - I guess that's to come but today is today..