It's been a bad day

[Helen33]

Today has been a day for facing up to the change in Alan since the virus. Alan hardly understands anything I say now and so I find myself repeating things over and over. For example:-

me: would you feed the birds
Alan: He gets the watering can and starts talking about something
which I can't understand
me: The garden doesn't need watering, can you feed the birds
Alan: o.k. - then he starts to pick up something else.
me: Alan look at me - can you feed the birds and I am pointing
to the bird tables.

He doesn't understand. I then get the bird food and give it to him. I feel so full of resentment at those moments and keep chuntering under my breath "I might as well do it myself in the first place".

I go to the kitchen waste bin and throw something in only to find that Alan has put the bin liner on the outside of the bin and he's done it so neatly that it must have taken him ages. I didn't notice myself at first because it's an inner bin and I couldn't tell from the outside.

I am so sad, worried, depressed, weepy and frightened because in just a few weeks it feels like I've lost a massive part of the man I've shared with you all. If I was to have joined TP for the first time tonight I would have presented very differently.
I never believed for one minute that things could change that fast. All weekend we've been nowhere. Granted we've watched the Olympics but I feel absolutely awful.

 

[twinone]

Hi Helen

So sorry to hear about Alan's decline since he has had a virus. I hope he starts to improve a little bit once he has recovered properly from his illness.

I can understand you being frightened and the feelings of sadness and depression, I felt like my stomach was turning over all the time and like you, used to say 'I might as well do it myself as its quicker', not because I wanted to be awful to Steve but because I was so scared and so angry about what the illness was doing to him. I felt I was on a roller coaster and just wanted to get off.

I think you cope with the feeling of anxiety once you get used to the next stage and the feelings start again when something else happens.

Hope tomorrow is a better day for you both.

Lots of love
Janet

 

[Lynne]

Poor Helen, different situation & relationship over here, but it's been a very trying weekend for me too. Not enough sleep, Mum just WON'T bloody well eat so she's getting weaker, so she needs me on hand every half hour or so to help her to the bathroom, rampant frustration & exhaustion for me, I'm a VERY bad tempered bunny altogether.

"Tomorrow's another day" some stupid cow said - SO BLOODY WHAT!

It doesn't help you, but I understand all too well.

Best wishes (?)
************************
ADDED: JANET/TWINONE - WE POSTED SIMULTANEOUSLY, I DIDN'T MEAN YOU!!!
11/8/08 Just remembered - it was Scarlett O'Hara, Gone with the Wind

 

[gigi]

Hello Helen,

I'm sorry to hear about this latest downturn with Alan..and understand how dreadful you must be feeling.


It seems very sudden....

Learning to live with Dementia is the hardest thing I have ever had to learn..

There are no ground rules...
Expect the unexpected...
And it may all be different tomorrow..

Sorry if I'm pointing out the obvious..I wouldn't ask Eric to feed the birds..not now..

But I would ask him if he could get the seed feeder down from the tree..and then give him the bag of seed..and then ask him if he could fill it..and maybe show him how to do it..and ask him to hang it back on the tree..

It's no good expecting things to be as they were..they will change..and sadly you need to tune in to the changes and moderate your own language and reactions, if you can.

I remember vividly last year giving Eric a sachet of weedkiller and asking him to mix it in the watering can..he reappeared 10 minutes later with the can in one hand..sachet in the other..and asked me what he should do...

And I felt like weeping..

I never believed for one minute that things could change that fast. All

Dear Helen..things will change...slow or fast..there are "markers"...Eric is going slowly...but he was up at 4 o'clock thismorning looking for me..and when I turned up in the kitchen he looked at me as though I was a stranger...and asked if I'd put weight on.

I'll never know..but I think he was looking for his first wife who was always very slim..

It's hard, I know..but we're all here for you...

Love gigi xx

 

[twinone]

Lynne

Its okay I did not take it personally, but thanks for letting me know it was not about me.

Just trying to help really as I have been in the same situation with the same feelings.

Love
Janet

 

[Helen33]

Hello Janet and Lynne

I think you cope with the feeling of anxiety once you get used to the next stage

I know you're right because I've been here before and I too feel like my heart is in my stomach all the time - it feels like high anxiety.

It is so awful because I was just getting good at the last stage and life felt sort of 'normal' (to us, not to anyone else). Now that normality is taken away and it's a completely different situation and I have to learn all over again.

I got Alan in the bath tonight and since then he's gone from wearing pyjamas to getting dressed in about 6 different shirts and jumpers This is all completely new.

Love

 

[Grannie G]

Dear Helen

Alan has put the bin liner on the outside of the bin and he's done it so neatly that it must have taken him ages. .

That is so sad. I feel how much it has affected you. I know how much it will have affected you for I know how Dhiren has struggled with his organizational skills and everything takes three times as long and even then it`s not right.

But Dhiren still has his language, and Alan losing his comprehension of language must be the hardest part. Perhaps gesture will help. It will not make you feel any better but it might help with communication.

I do hope the downwards slide is not permanent and once the infection clears things may improve.

You sound understandably distraught Helen. I wish I could offer some constructive help.

Love xx

 

[Skye]

Dear Helen

Things do seem to be happening so quickly for Alan. I'm so sorry.

There are quite a lot of parallels with John.

The virus seems to have had as devastating effect on Alan as John's UTI had on him. Not quite as dreadful because Alan is not as far along as John, but still a massive downturn. And I know how devastating that is.

Then there's the language. I used to have exactly the same problem, with John not understanding anything I asked hom to do.

It puzzled me that John could get himself a glass of water, but if I asked him to get me a glass of water, he couldn't. Like you, I got very upset because I wondered if he was being deliberately unco-operative.

But it was explained to me that because the language area of the brain was dead, messages could not get through from the area that received the instruction. So that although he was quite capable of getting a glass of water, he could not understand my message.

You sound as if you are at the stage I was when I first got Crossroads, I was going round the bend with frustration.

Please ring SS tomorrow and ask for a Carers' Assessment, and give yourself the opportunity to get out and talk to people. It's the only way I survived, and I love John dearly, as you love Alan.

Love and hugs,

 

[twinone]

Hi Helen

With hindsight I would just let him wear what he wanted. I used to try to force Steve to wear pyjamas for bed and if he didnt want to wear them it would just make him more anxious and us both upset. Its not worth it.(he never wore them before his illness).

Love
Janet

 

[Helen33]

Hello Gigi

Sorry if I'm pointing out the obvious..I wouldn't ask Eric to feed the birds..not now

Nothing is obvious to me at the moment. I appreciate your help and I now know that I will have to adapt to the new situation. I kept hoping that things would go back once the virus was cleared up but daily things are getting worse. Asking Alan to feed the birds was beneficial to him before because he liked doing it and he could do it. This has suddenly gone I'll try a couple more times over the next week just to see if there can be an improvement and, if not, then I'll adapt to including Alan in more suitable ways.

I just want to cry and cry but I have to hold it all together. Tomorrow I have clients (Alan doesn't seem to know what my work is anymore) and I am wondering just how long I will be able to continue working. Hope the sitting service gets set up soon.

Anyway you know cos you've been there. This weekend people have been wanting me to be there for them on the phone and I have found it very difficult because I feel like I'm falling apart. I told my daughter I was struggling and she was very surprised - she just thinks I'm a rock and tremendously strong. I told her I am usually but I am struggling at the moment.

Love

 

[Helen33]

Dear Sylvia, Hazel and Janet

You are so kind that it's made the tears flow so I'm going to log off in a minute so that Alan doesn't become distressed about me crying.

Perhaps gesture will help

I have been doing the gestures Sylvia for ages now and he doesn't seem to understand them any more

I think you've touched me by kindness and it's a good thing that the tears are dropping out at last (I've kept them in all weekend).

It is sad - but I will adapt. Alan's cataract operation is on thursday and I don't know now whether he will be able to follow instruction now. That's how quickly things have changed and I think they will clearly see that change at the hospital. Still - what will be will be.

Love to you all and thanks

 

[citybythesea]

Dear Helen,

no words of advice from me, just a bigHUG

Hugs

NAncy

 

[Helen33]

Dear Nancy

Thank you for the hug. We both slept well and Alan is still asleep now which is another change. This morning, at the moment, I don't have that horrible anxiety feeling and feel more ready to cope with things. This may be because I haven't had to face anything today yet!

Love

 

[Grannie G]

Dear Helen

Reading so many posts from fellow carers, we have some idea of significant areas of deterioration to expect with dementia, but the sequence is always different, and however much we think we know, we can never cushion the shock.

I do hope you and Alan have a better day.

Love xx

 

[gigi]

Morning Helen,

Pleased to hear you slept well and are feeling better.

I sincerely hope today is better for you.

Love gigi xx

 

[Helen33]

Morning Sylvia and Gigi

Alan is up now and seems 'normal'. He has dressed himself and he's out feeding the birds

I am glad about this but I also know how fragile it is and to keep in my mind that he is in the process of change. I have to work for an hour soon and I will see how he is after having been alone for an hour. He's not been coping very well being alone just recently, hence the need for the sitting service.

Wishing you both well for the day.

Love

 

[sad nell]

helen i understand how you are feeling, my trev can no longer follow any instructions, cannot dress or take care of any personal care, doubly incontinent and like you it was so hard to accept this drastic change, but somehow we are still coping a year further down the linen he is only 58 so it breaks my heart to see this once very talanted person , who excelled at everything now being totallt reliant on me for every part of his life,we now have help from crossroads and the man who comes for 2 hours is wonderful to trev and makes trev laugh by his funny personality, think they were very clever to match him to trev.So please accept any help offered or fight for it if you have to, i also felt very trapped from fri- mon , but that 2 hours on a Saturday just for me has made such a huge difference,and i do not feel so resentfull, though i never actually admitted to feeling that way.You will cope because you love your husband and just have to, hope you feel better today best wishes to you both
and glad the birds have had their lunch today , Pam

 

[Helen33]

Dear Pam

What a lovely post, thank you. You made me smile about the birds having their lunch

Alan has been better today and he looks better. I have had a taste of what's on the cards though this last week or so and feel more prepared for the next change as it is on the way but not here completely yet.

Love to your and your Trev and thanks.

 

[heartbroken]

Hugs Helen

Sorry not to have been around, as you know I am having it hard at the mo, reading your post has started me of again the tears are rolling yet again, I feel for you hope Alan's inprovement contiues and thing don't downturn yet for you
sorry things have been tough
XXX

 

[Lynne]

Alan is up now and seems 'normal'. He has dressed himself and he's out feeding the birds

And like fetching a glass of water quoted earlier, he can do it when it's his idea because he doesn't have to do the additional step of
processing & remembering your request for him to do it, or worry about forgetting or 'getting wrong' some part of your request?

Sorry, now I've typed it that's so obvious that it seems almost insulting to say it. But I'll say it anyway now.