The Price of Change

[Tender Face]

Sorry, I have not been around much for anyone of late .... but I thought this was worth posting ....

Mum's 'package' of day care and buddying through the week all seemed to have settled wonderfully - giving her much needed stimulation and me a much needed break from daily visits ............... this week I thought I had reached Utopia ....... an extra day at the day centre thanks to Valentine's Day. I had my reservations ..... would she remember dad? Would it actually distress her? No - mum - as the true 'if I can get anything for nothing' crusader of her particular genre of her generation was determined to go ........... so I agreed when the day centre checked out with me that she was Ok to go ... that was before she muddled things claiming she had a doctor's appointment on the day (which she hadn't) ..... that she was not waiting about for the transport laid on ...... (strange change of mind on the finanical front ... she wanted a taxi booking and didn't mind what it cost as long as she didn't 'miss out') ..... blah blah ... I have spent the best part of a week reassuring that arrangements were all in hand ....... taking the phone calls from SSD and the day centre themselves when she has contradicted everything we have put in place for her ......

Mum reports tonight she has had a 'great day' - but quite frankly - my own moans aside about the angst this has caused - it has proved how she cannot cope with any change of routine ....... and there is part of me tonight saying ... 'forget those special days' ...... However much she has enjoyed it - can it equate with the anxiety it has provoked for her? We seemed to be doing so well with 'If it's Tuesday you know this happens ......?' A change of day, a change of 'transport time' ... and mum has been in panic mode for days.........

The importance of routine has been advocated from so many sources, but I never felt its full impact until this week - when things were changed for what seemed a very positive reason ....... but has had a hugely negative impact in terms of disorientation ........ (not to mention my stress levels)

Comments welcomed, Karen, x

 

[jenniferpa]

I think you're right Karen (sadly). I think we sometimes think it's just the "big" occasions like Christmas and Birthdays but actually any change in routine can be difficult. I suppose it's not unreasonable - if your memory is fading then you probably find change frightening rather than stimulating. I suppose if there is any virtue in memory loss it is that routine, far from being boring, is actually more than exciting enough.

 

[christine_batch]

Dear Karen,
Peter use to be exactly the same. If his routine was changed, even for birthdays, Christmas, you name it, boy was he stroppy.
When he could talk he would say it is just another day.
Yes to him it was but it would have been one day of respite for me.

What ever we sort out, try to do, something comes along and makes it one stressful time, when why bother in the first place.

Do hope you are trying to get a break.

Best wishes

Christine

 

[BeverleyY]

Hi Karen

I think after reading your post that you need to focus on your Mum saying said she had a great day.

Whilst any change needs settling in, a change today becomes routine after a while.

I'm about to make a change i.e. Dad going to day care - I know he will come home and say he hated it, and it's full of old people. Then I will go through the guilt you are feeling.

I'm going to try a carer popping in too (under the pretence of ironing as Dad doesn't see why he needs anyone). Is that what you mean by buddying?? A carer??

You're doing a great job caring for your Mum. There are many children out there that won't take on the role of caring for their parents as they adopt the 'they've had their life' attitude.

Best wishes.

Beverley x

 

[Taffy]

Hi Karen,

With my own experience mum had a very difficult time with any change. I think that you'll find this to be true of many dementia sufferers. Just another phase.... Regards Taffy.

 

[Skye]

Hi Karen

I think you've hit the nail on the head.

Special days can cause such confusion -- and grief for the carer as everything conspires to remind us of what we've lost.

On John's last birthday he was so distressed all day because people were giving him presents, and he had nothing to give in return! I made up my mind that this year I'd have some things for him to give to people -- sadly, he won't even be that aware now.

It's all a huge learning curve, and no matter how much people warn you in advance, it still hits you like a ton of bricks whan it happens.

Love,

 

[connie]

Karen, 'special days and changes in routine all belong in our world.

We have to focus on their world, it's bewildering enough for them. Seldom do the two worlds merge as the illness steadily overtakes.

Take care now.

 

[zonkjonk]

Hazel, that happened with my mum too.
in 2006 when it was my b/day,in march I didnt tell her, because she was way beyond things like that. I took care of all of that sort of thing for her.
Mothers day, 2006, I bought her a box of chocolates, she couldnt have any perfume or such like as no longer knew what it was etc etc.used cosmetics inappropriately eg...trying to spray hairspray on a shingles rash.

she was very distressed that she didnt have anything for me
me...."no mum, its mothers day, i buy a pressie for you, you DONT buy a pressie for me"
4 weeks later that box of chocolates remained unopened on her kitchen bench, so when I picked her up & took her to mine for weekend care I took the chocolates with me to my place and she ate them there.
she obviously didnt recognise the box of chocolates for what it was.
(brother at the time was caring...lived in situ semi detached flat put the back)
there comes a point when you can no longer celebrate special days with an AD sufferer
kind regards,
Jo

 

[gigi]

'special days and changes in routine all belong in our world.

We have to focus on their world, it's bewildering enough for them. Seldom do the two worlds merge as the illness steadily overtakes

Dear Connie,

That's so true.

I think that's one of the most difficult things to come to terms with as a carer..something we learn about and adapt to as the disease progresses. I'm seeing this with Eric more and more as the days go by..Routine = safety and security.

Love Gigi x

 

[Grannie G]

This is now happening to Dhiren.

He lay in bed this morning and said `I feel so comfortable and safe here, I don`t want to get up.`
He is up now but still not dressed.
He asked what today`s plans are and I said `Nothing.` He was pleased.

 

[Kate P]

We have experienced the same problem with mum. The stress that special occasions cause her can seem to outweigh the joy of the occasion.

Christmas for my dad was just a nightmare - she was obsessed with buying things for everyone and anyone and whenever dad told her she'd already bought them she'd go bananas!

It was strange she was that way though because on any other occasion she thinks all the presents should be for her and she tries to take them and open them - equally trying until we discovered it was just easier to let her open them. Takes a bit of the joy out of it though!

It's my 30th birthday party next week and that has caused her to be very anxious although we can't work out why. Maybe because there will be a lot of people there but we have invited her friends so she has people to sit with and spend the evening with.

Everyone knows that mum has dementia so hopefully they won't be too alarmed if she tried to get the presents off them as soon as they come through the door...!!

We laugh because we have to but when you're living with dementia there's just nothing that isn't somehow tainted by it... I'm not being selfish there because as long as my mum is there I'll be happy but it's ruined for mum too. I mean that it's just so life absorbing isn't it - things you previously took for granted can become a battle field or terribly upsetting - anniversaries, birthdays, Christmas, holidays, family Sunday dinners...

I'm sorry, that's a terribly depressing whinge isn't it but people (like my aunt and uncle!!) think dementia is just a bit inconvenient for dad but otherwise isn't a big deal and the truth is it casts a shadow over the life of the person with dementia and everyone truly involved in loving and caring for that person. Life can't ever be the same again...

It sounds like I'm horribly depressed and I promise I'm not but it's a sobering thought. Maybe it's the hormones eh?

 

[connie]

Dear KateP, you are not whingeing, just stating it like it is.

Sometimes it does help to take a long hard reality check. That's not being depressing, just realistic.

I find that it helps to keep me sane.........not too many expectations. Take care now,

 

[Skye]

I'm sorry, that's a terribly depressing whinge isn't it but people (like my aunt and uncle!!) think dementia is just a bit inconvenient for dad but otherwise isn't a big deal and the truth is it casts a shadow over the life of the person with dementia and everyone truly involved in loving and caring for that person. Life can't ever be the same again...

Kate, It's not a whinge, it's just the way things are. It's true, people do think that, and I must admit that before John got dementia, that was pretty much my idea too. Picture of a dear little old lady sitting in a corner with a sweet smile on her face and a vacant look in her eyes.

We all know that's not remotely what it's like, but the problem is getting the true picture out there. We're all reluctant to expose the true horrors of our loved ones' behaviour to the world at large, it's only here that we can be honest.

How are things with your mum and dad just now? And how are you?

Love,

 

[Kate P]

Thanks Hazel and Connie,

I'm glad you didn't see it as too depressing - the last thing I want to do is come on here and depress everyone who already has enough to worry about!!

We're all about the same although I do think mum is going into a new stage again - a lot of the time I've seen her she's just drifted off into her own little world. She seems much calmer there so I don't know that it's a such a bad thing for her although when she isn't drifting off she's still quite aggressive and difficult.

It's just shocking how quickly she's affected although I know that FTD is one of the most aggressive dementias.

I think the hopelessness is the thing I find hardest to deal with - I don't know if that's just my perspective but I can't see any hope. Actually I can't even see what I should be hoping for. People say to us you mustn't give up hope and sometimes it's on the tip of my tongue to say "for what?" What should I be hoping for? That she gets better - well it's just not going to happen is it - we may have better days than others but the end result will still be the same.

Does anyone else have hope? What are you hoping for? Believe me, I'm keen to learn - it's very unlike me not to be able to see a positive but with this I really can't.

 

[connie]

Posted by KateP

Does anyone else have hope? What are you hoping for? Believe me, I'm keen to learn - it's very unlike me not to be able to see a positive but with this I really can't.

.

I am not sure what the answer to your questions are Kate.

I look at Lionel's progression through his illness, and try to find the positives. For us, Lionel being diagnosed relatively young, and then quite fit, we decided to make the most of every day.

Yes we thoroughly enjoyed the 'good' days, and learned to adjust to the rest. We planned for the future, although both of us knew that most of our plans would not reach fruition. So I suppose we lived in hope, hope for a few extra years.

We both became changed with the illness, but I hope the changes in me have been for the better. It showed us who were true friends, and we made new friends through the dementia world.

My hopes now for Lionel is that he is "calm and comfortable" anything else is relative. I hope that he is with me for a long time, but that maybe a selfish hope.

I hope that I will always be 'remembered' by him, somewhere deep inside. I hope he realises just how much I love him.

 

[Norman]

Hi Karen
my wife hated change,but again it a well known fact that dementia sufferers hate change.
If we went out anywhere she always wanted to go home.
I knew when that one was coming,she would say to me"I never mind going home do you"?
Her words to me were,"I don't care as long as I have you".
We gave up holidays because the upset and confusion that was caused by them was not worth it.
Norman

 

[Tender Face]

Does anyone else have hope? What are you hoping for? Believe me, I'm keen to learn - it's very unlike me not to be able to see a positive but with this I really can't.

Kate - so hard when all your positive bubbles seem to have 'popped' ...... I agree, it often seems hopeless .... a diagnosis of anything with no cure on the horizon doesn't exactly make us very optimistic does it?

What do I hope for in terms of mum? I hope I don't let my mother down..... I hope I do all the things I know my dad would have wanted me to do... I hope I can manage (somehow) to keep her in her own home as she wishes .... I hope she will understand if the day comes that that is no longer feasible I am still doing my best for her ..... I hope she knows I do love her ..... I hope she enjoys her day centre next week ..... I hope United win the cup (because she will LOVE that!!!!!!! ..... so much to hope for .... I guess we just have to adjust the 'levels' of hopefulness ......???

Take care, love Karen, x

 

[Skye]

My hopes now for Lionel is that he is "calm and comfortable" anything else is relative. I hope that he is with me for a long time, but that maybe a selfish hope.

I hope that I will always be 'remembered' by him, somewhere deep inside. I hope he realises just how much I love him.

Connie, you have spoken my mind. That is exactly what I hope for with John.

Today I have been given a glimmer of hope -- not for a cure, or even much improvement, but a hope that we don't have to say goodbye just yet.

Kate, your situation is different from mine, and probably Karen's reply is closer to what you hope for.

Love and hugs,

 

[Margarita]

.. However much she has enjoyed it - can it equate with the anxiety it has provoked for her? We seemed to be doing so well with 'If it's Tuesday you know this happens ......?' A change of day, a change of 'transport time' ... and mum has been in panic mode for days.........

Yes I found that also with my mother any change in her day center would make her feel unbalance, no matter how positive it was , until she got they and all anxiety was forgotten .

was it worth it Oh yes it was , because I shared that day with her so it was a lovely memory for me to keep .

another time they gave her an extra day, when she was only going one day a week . was it worth it all . oh yes it was , because it gave me more time for myself .

The importance of routine has been advocated from so many sources, but I never felt its full impact until this week - when things were changed for what seemed a very positive reason ....... but has had a hugely negative impact in terms of disorientation ........ (not to mention my stress levels

Stress level on us the carer , oh yes I felt it , seem to be pass and parcel of the caring role .

I can't offer any tip on that , then just taking a deep breath , when they start to get very confused worry in the change of routine , they saying also we can say to ourself " This time will pass " This time will pass "" think I read it on TP it help me in those moment .

 

[Lynne]

Does anyone else have hope? What are you hoping for? Believe me, I'm keen to learn - it's very unlike me not to be able to see a positive but with this I really can't.

This struck a chord with me; another TP contributor has a tag-line to their signature which says "Since I gave up hope, things have become so much easier." (At least, I think that's it!)

I have never thought this was a negative or defeatist attitude, but realistic. Things are as they are, and dementia is a one-way journey. Pretending that the condition will get better does not help at all. Better to take things day by day without false hopes, and make each day as good as it can be.

(PS; I wish that I was succeeding in doing that, just in case anyone is under the misapprehension that it works!)