When Alzheimer’s really kicks in......

[Cliff]

I am just shouting at TP as I cannot shout at Dee.

We are into the endless folding and refolding and refolding a paper serviette and cannot come to bed before it is finished

How on earth do you persuade someone to stop and come to bed ?

It is truly gut-wrenching to see it happen and not be able to do anything about it. So have switched on my computer to tell TP as someone will recognise the situation and maybe offer advice.

 

[BeckyJan]

Dear Cliff:
Wish I could help but I do not have the same problem. Similar delaying tactics for going to bed but not 'folding'.
Why is it when we are feeling exhausted and less able to cope do these things hurt us. Thank God you can shout here.

Take care Jan

 

[Cliff]

Thank you Jan,

I've got my patience back again and I'll have another try.

Makes me so grateful for TP.

With love

 

[Grannie G]

Dear Cliff.

Would you consider using kitchen roll instead of paper serviettes. You can get some good quality ones, plain or patterned and as they come on a roll, Dee might not feel the need to fold them.

Just a thought.

Love xx

 

[Skye]

Hi Cliff, glad your shout got answered last night. Jan's right, when we're exhausted and stressed, it's the little things that tip us over the edge. I never had the 'delaying bedtime' problem, John wanted to go to bed immediately after tea, it was persuading him to stay up that was the problem!

I'm wondering if it could be a neurological thing rather than a delaying tactic -- sort of 'restless hands' syndrome?

When John has an infection, his hands are never still, and he constantly pleats and repleats the sheet or blanket. If that's the case, perhaps one of those soft balls that OT use for arthritic patients to knead might help, or even a 'beanie' toy?

Love,

 

[Cliff]

It's morning snd we got to bed eventually.

I am sure something is happening to Dee. She has a chest cold and is quite lethargic. I'll see how she goes today with chemist medecines and if they don't work, will seek help.

Last night it was a paper serviette but for some time now even though Dee might be bright and cheerful, she sits folding a tea towel or the table cloth or anything that comes to hand. And the folding lasts for an hour at least. Have tried encouraging her to do something else but the folding is something she has to do - it's very important to her.

I could never shout at Dee but last night was very difficult. Yet when I got her to bed about an hour later she was as loving as ever.

It's not Dee I'm seeing it's this awful disease.

Thanks everyone for your support, TP is a such a help - how else could you get so many friendly bits of advice from people who know what they are talking about.

Love to you all,

 

[Grannie G]

Cliff, my mother used to fold. She would sit and pleat her skirt, pleat the bed cover, anything she could lay her hands on. As long as it wasn`t interfering with anything else, it`s acceptable, but if something else needs doing, it`s a pain.

Years ago I was on traction for 7 days, lying flat and unable to move. I found myself pleating too. I was told it was because of boredom.

But the trouble is with dementia, even if it is boredom, rather than a repetitive behaviour, there are few ways of easing it.

Hope things are better tonight.

Love xx

 

[Cliff]

Hello Sylvia,

I am sure you are right, it is boredom but what can you do about it.

Last night Dee was insisting that she had to finish it (the folding) and kept repeating: "well, you wouldn't like it if I asked you to stop doing something that had to be done"

Maybe it starts from boredom but then turns into a task that is vital because they are doing it.

With love,

 

[Grannie G]

....and perhaps because there is so little they can do, these tasks become very important.

Dhiren insists on vaccing everyday, and if he sees a couple of crumbs, he`ll get the vac out just for those. It`s a shame he doesn`t see behind the furniture, or in the corners for they are left untouched.

But as he says, there`s not much left he can do so he has to keep in practice. And all the time my heart`s in my mouth as he unsteadily navigates the flex.

Love xx

 

[gigi]

Dhiren insists on vaccing everyday, and if he sees a couple of crumbs, he`ll get the vac out just for those. It`s a shame he doesn`t see behind the furniture

Hello Cliff,
I've just finished reading your thread and can identify with so much.
It's very difficult when the "person" you have known and loved starts to become "someone else". I'm sure we all deal with it somehow in different ways. Eric was always generous,polite,a true gentleman,humorous,loving....
Now he seems to be mean.."how much did that cost"

Rude..pointedly and personal to others and myself

And has no emotion..the last time I cried in front of him(with very good reason...but nothing to do with us..I desperately needed some comfort..) he patted me on the arm and said "Never mind, cherie..c'est la vie" and went back to watching TV..

But it's not all bad..and I've wandered a bit-the point I wanted to make was about the crumbs..

Eric has this same fetish. I have a rechargeable mini vac -perfect for this. Eric can no longer work out the "Henry Hoover"
so when he has his cleaning up moments he finds this useful. It's handheld and his only complaint is that it makes his back ache

Sorry Cliff-hope you don't think I've stolen your thread-just responding as things come to me.
I do wish you well - it is so hard when another step down happens
Lots of love Gigi xx

 

[Cliff]

Hello Gigi,

I think you have summed up the situation perfectly.

It is another step down that you pray is never going to happen but it does.

The highlight for me is tucking Dee into bed when she is all smiley and loving. Hope you have moments like that.

And thank you Sylvia, that compulusion to do something is there and we can't understand,


With love,

 

[Cliff]

Another bad evening.

Dee is totally confused about where we live and could not understand why I wasn't ready to go out. The wind and the rain are lashing the house which is on a cliff-top. Dee very grumpy because I would not go out. The people are back in the house and there is no food for them and Dee is very anxious about them.

I must go and talk to the RMN's at the clinic tomorrow because the change is so definite.

I am really using TP to talk to myself as for the first time I am feeling very lonely.

The Alzheimer's has truly kicked in.

 

[Grannie G]

I`m so sorry Cliff, it is heartbreaking. Please let us know what the RMN says.

Dhiren is beginning to see people in the house. This morning we had to get up because they were `queuing up to sleep.`

It doesn`t get better.

Love xx

 

[Skye]

Dear Cliff, I'm so sorry Dee has declined so suddenly -- I know how that feels!

Somehow, because the decline has been so slow and gentle, you expect that to continue, and when there is a sudden dip, it's such a shock to the system. The personality change is the hardest thing to cope with, you really feel you are losing your loved one.

I hope they can come up with some medication to control the hallucinations -- and provide more support for you. Please don't feel you're on your own, so many of us here care about you and Dee.

Sylvia, I'm sorry you're having to cope with hallucinations too. You seem to have gone from one difficult stage straight into another. I hope you too can get some help.

Love,

 

[Cliff]

Thanks everyone for your understanding.

I went to see the RMN's this morning while a Crossroads carer was here,

They know Dee isn't drinking much so when she goes to the Day Centre tomorrow they will take a sample and do a blood test. Could be UTI and this will be checked.

The problem for me is that Dee is here one minute and then the other person takes over. I'm sure you know the situation very well. For me, it's only been happening in the last month or so and I haven't got used to it yet.

Love to you all,

 

[Grannie G]

I haven't got used to it yet.

,

I doubt if you ever will Cliff. You might recognize it, not be so shocked by it, but are unlikely to get used to it. It hits you every time it happens.

I hope it isn`t a UTI. But then again, if it is, something can be done about it.

Love xx

 

[madala]

Dear Cliff
I feel so sorry for all the troubles and tribulations you are going thro at the present time Kath my wife is reacting a different way ,every body she see,s the crossroads carers people she meets out, old friends and former work collegues she wants to put her arms around them and tell them she loves them.She does not remember any ones name now .A year ago she went thro a spell when she was aggresive towards everybody but a couple of weeks in hospital where they tried different drugs changed her.I Hope and pray the same can be done for you,good luck and best wishes
MADALA

 

[Cliff]

Thank you Madala for those kind and thoughtful words.

Love and best wishes to you and Kath

 

[Regina]

Dear Cliff

I'm relatively new to TP, but I wanted to tell you that I'm sorry you have to go through this. My mother in law has just moved in with us, but a couple of years ago she lashed out at my children blaming them for doing things they didn't do. Fortunately they were old enough to understand although it was still surprising. She told my husband she knew he stole some money which I know he didn't steal and never would. Lately (3 yrs. later) she has taken to yelling at me for things that are not happening. Her favorite is "you're killing me" when I'm putting her flannel nightgown on her. I've done everything I could humanly do to make her happy and normally she would be soooooo appreciative, but now I get my face about a foot from hers and tell her she is yelling and I won't tolerate it and suddenly she'll quit. I talk to her like a child and a lot of times she responds just like I would expect a child to respond. So far it's kept me from crying. I know that one day she won't get it, will keep yelling, or something else will take it's place. I've heard many people say- the moment you think you have it figured out--it changes. It's sooooo true! I could go on but I won't. I wish you all the love and support you need.
Remember--take one day at a time or one minute at a time if you need to.
Regina

 

[Brucie]

Just a moderator note here:

People who come to Talking Point are kind, and, in looking around the forum, may find a thread that they wish to respond to.

In most cases this is appropriate, but sometimes - because there is no way of their knowing - things may have moved on, though the support is always good to have, whenever it comes.

In this example, Cliff's Dee passed on last summer http://www.alzheimers.org.uk/talkingpoint/discuss/showpost.php?p=147718&postcount=18

There is no way Regina could have known, other than by trawling through many, many threads, so I wouldn't want her to be concerned about this.

We hope that Cliff is well.