a bit down

Canadian Joanne

Volunteer Moderator
Apr 8, 2005
16,501
66
Toronto, Canada
Brucie, right now my mother does (more or less) know how she feels. There are times when she is inappropriate - saying she's cold when she's sweating. Mostly, I think you're right - she's just trying to make conversation. But her voice is so flat and her face quite expressionless. Except of course, like today when I tried cajoling her into taking her dirty bra off & putting clean clothes on. I had managed to get her to wash up her smellier bits & pieces & should not have tried to get her to change her bra. After all, I got her to change her panties. So a big tantrum, swearing & marching out into the hall in panties & bra!! And you should have seen how my mother reacted!! (joke - okay it's a bad one but so what) She has done the Lady Godiva a number of times, particularly when she's being bathed.

What is it that AD patients hate baths & washing themselves & changing their clothes? It's so common. And my mother was incredibly persnickety when she was well. At the beginning of this interesting journey, I said to my husband "Mum's so particular, I'm sure her hygiene will be good for a long, long time." But Alzheimer's certainly has its surprises. I do have one little trick that usually works. When she gets stroppy about changing, bathing etc. I get her to smell her clothing or armpit. When she's quite ripe, she's much more amenable to cleaning up. She'll say in a surprised voice "It smells". The urge to respond with "No s--t Sherlock" is almost overwhelming.

She's been rather cranky the last week or so, telling me off quite a bit so it's been a little tiring. I just move out of her sight for 5 or 10 minutes, come back & start again. God I hate this disease.
 

daughter

Registered User
Mar 16, 2005
824
Yes, so many horrible parts to it but I enjoyed your joke Joanne! When my Dad was still living at home, Mum used to put the music on and 'dance' him into the shower! Nothing works every time though, eh?
 

Norman

Registered User
Oct 9, 2003
4,348
Birmingham Hades
I think it is probably right that they are making conversation.
My wife complains a lot about being cold ,we put on the fire and then later I am informed that this room is like an oven.
The favourite is the sky."I don't like the look of that sky"full of rain.
"What was the weather forcast"?
When I go to the newsagents(away 5 minutes) the same questions every time
"Did you see anyone that you know"?
"Many people about"?
"Is it nasty out"?
These are conversations that she is in control of,she knows what she means,but anything involved ends up in talking rubish.
I am sure Bruce is correct in his explanation,it makes sense to me
Norman
 

connie

Registered User
Mar 7, 2004
9,519
Frinton-on-Sea
Sure Brucie is correct. These mundane conversations only seem to have revelance to the person concerned. Lionel has converations with himself, that is to say he is talking to me, but answering himself, as if he knowes I do not understand. I don't think I do all the time, it takes a lot of consentration. Connie
 

Canadian Joanne

Volunteer Moderator
Apr 8, 2005
16,501
66
Toronto, Canada
Dancing into the shower

Hazel, that was very clever of your mother to dance your dad into the shower. One thing about AD, it certainly gets the carers thinking "out of the box".
 

Jude

Registered User
Dec 11, 2003
2,287
66
Tully, Qld, Australia
Hi there all,

One of the worst things about AD is that nobody really understands what we as carers are dealing with - except other carers of course.

Spinoffs from this are that because you are caring 24/7 for a lot of the time, your world seems to become so much smaller and your conversation limited due to lack of outside input. Friends and family members tend to fade in to the distance because they can't handle the situation and can't understand it, leaving you feeling isolated and frustrated with the lack of support and communication with the outside world.

Fortunately we have our TP Forum. Everyone here understands exactly how YOU feel; how you are coping with AD. So do use it to the max! This forum is a place where you can talk about your feelings of inadequacy, frustration, guilt, sadness and also the small highs and achievements of getting through another day.

You are not alone, so don't be afraid to vent your feelings. You will always get an answer because we understand exactly what's happening to you.

Jude
 

Sheila

Registered User
Oct 23, 2003
2,259
West Sussex
Couldn't have said it better! So very glad to have you back on board Jude, like you, TP has been like a best friend to me when no one else was around to talk to or understand. We all need this outlet when the going gets tough or even when it's good and we can share a little happiness, we are now more than a thousand strong, we have something really special in our TP, it's there for us 24/7 (just like caring!) It's non judgemental, accessible worldwide, has a wealth of knowledge, oh, I could think of loads more but I will leave it to you all to contribute your feelings of TP I think. Love She. XX :)
 

allylee

Registered User
Feb 28, 2005
180
57
west mids
Having read all your responses to Lulu, Ive decided that the holiday I was planning to take my mum on is probably not the best thing for her ! Ive been very torn between leaving her at the mercy of her friends, many of whom she denies she has a problem to, and to taking her abroad with us.At one point even considering cancelling the family holiday this year because of her situation.
One of lifes little dilemmas for us carers! Thanks everyone.Ally xx
 

Lulu

Registered User
Nov 28, 2004
391
Dear Ally. Perhaps it will be better for you, but it's a hard decision! My Mum now tells everyone what a wonderful holiday she had, the weather was perfect (it was rainy and cold). She talks of it in tems of normal 'holiday language'. It's all automatic, yet really she hasn't a clue what she's talking about! The shocking part for me was learning how little she was understanding, because she seems so absolutely 'with it', and the very picture of health!
Before we went, we toyed with the idea of leaving her in the care of her very good neighbours, but that didn't work the last time we tried. As soon as our back were turned, she'd told the neighbours she was fine, that she had a daughter who fussed and worried too much -and of course the neighbours took it at face value. This meant that she didn't get her Aricept over 2 days, or ate! Respite care at that time was out of the question, as I myself still couldn't accept she was ill and I couldn't bear the thought of leaving her in a home of any description. But that has changed now. I feel it would be kinder to leave her, either in her home with carers calling in frequently, or a care home. Since she's been back, she has been perfectly well again, very happy because she is in her routine. In fact I'm going to satrt loking into care homes as soon as I can, for respite initially and then for the future should she need to go into care. Does anyone know if you can have your name on a waiting list indefinitely? I have found useful links through other replies into how to look into inspection reports etc.
Whatever you decide, Ally, I do hope you enjoy your holiday. Thank you to everyone. Lulu
 

Sandy

Registered User
Mar 23, 2005
6,847
Lulu said:
Does anyone know if you can have your name on a waiting list indefinitely?
Hi Lulu,

We have been visiting care homes for the last several months for my father-in-law, who is currently being cared for by my mother-in-law. We have looked at about 10 so far. Each home seemed to understand the need to "plan ahead".

The waiting list policy did vary a bit from home to home. The home we liked the most encouraged us to put his name on the list (he would have been number 15).
They said that if his name came to the top of the list and we were not yet ready to accept a place we would not have to go all the way to the back of the queue.

In fact, he is now on three waiting lists with different homes as there is very little provision near my mother-in-law. If we did take up a place, we would of course, notify the other two homes so he could be taken off their lists.

Take care,

Sandy
 

frederickgt

Registered User
Jun 4, 2005
124
92
Hornchurch,Essex
anna is getting worse,stil no help from social worker or OT!
Anna is getting very aggressive to her daughter,wants to throw her out,want me to take he,Anna,r home again!!
I need help and advice but not getting it,I am stressed out myself,I need to know how I can change my will so that my daughter is not shut out should I die before my wife,our bungalow is in both our names,aricept doesnt seem to be doing anything for her.There could be a tradegy here,said I wouldnt give up.but there isnt much left!
 

connie

Registered User
Mar 7, 2004
9,519
Frinton-on-Sea
Hold on in there seetheart. Anna is confused due to the dementia. What she says and thinks at present are not necessarily so. Try to see past today, and hang on in there.
You are in a situation most of us have experienced, and agreed it is HELL. Somehow we come through the other side. Remember, we are always here, to listen, and join in your troubles
What is the saying ; a trouble shared is a trouble halved; maybe not quite true but we know where you are at.
God bless. Connie
 

Jude

Registered User
Dec 11, 2003
2,287
66
Tully, Qld, Australia
Dear Frederick,

Sounds like you have had a simply dreadful day and are feeling at your wit's end.

Please be assured that there are a lot of members on TP who would be more than willing to help you through such a bad time. You are not alone in having these awful despairing thoughts - we all feel like just giving up at some time or other.

Please do post in again as soon as you can.

Wills can be changed. Your GP and CP will be able to help if you feel that the Aricept is not doing the job. Everything else can be sorted too - just start thinking day by day. You can eat an elephant in small bites........

Thinking of you tonight.

Jude xx
 

Sheila

Registered User
Oct 23, 2003
2,259
West Sussex
Dear Frederick, you sound as if you've had a pretty rotten day. It is so hard when the one we love says such awful things isn't it, but like the others have said, it's not Anna it's this darn awful illness. I am not sure of your exact situation, does Anna still live at home with you and your daughter? Please forgive me if I have misunderstood here. Do you get any help at all with the care? If you need more help, especially if Anna is aggressive, you can ask for it to be treated as a crisis situation. There should be a 24 hour duty number of your local SS that you can ring for help. I feel so much for you, this illness is one of the worst for a carer to cope with in my book. Please write in again, it does help to talk, we are all here for you and will do our best to help. Remember what Norm says, day by day, hope tomorrow is better for you, sending you a big hug, love She. XX
 

Sandy

Registered User
Mar 23, 2005
6,847
Dear Frederick,

I agree with all that has been said so far. Contacting the emergency Social Services team and your GP sounds like the way to go.

As regards your daughter, it might be worth getting an Enduring Power of Attorney set up. The Society has a factsheet on that here:

http://www.alzheimers.org.uk/After_diagnosis/Sorting_out_your_money/info_EPA.htm

Also, the Alzheimer's Society help line can be a vital resource:

http://www.alzheimers.org.uk/About_our_work/Contact_us/helpline.htm

Take care and keep posting,

Sandy
 

frederickgt

Registered User
Jun 4, 2005
124
92
Hornchurch,Essex
Thank you folks,Yes I was a lot down and dispirited,Anna said she was suffering from diaorhea,so Ichanged her dose of aricept from morning to evening,that seemed to make things worse as what happened a couple of days ago.
I have now gone back to giving her aricept with her breakfast,and that seems so much better,it is almost unbelievable the change in her attitude.
Have messages out trying to contact SS ,also for a further assesment,also am looking for advice on how to add a "codicil"? to my will,so that in the event of my predeceasing my wife,the ownership of our bungalow doesnt pass wholly into Anna's hand.
I fear that sarah could not and would not be able to cope and work full time,so Anna would be shunted off into a home,and then SS would sell our bungalow to pay for her upkeep,leaving my daughter out on the street.
Anna has said she would hate to go into a home,and if I died before her,she would seek means to end her life!
Worrying isnt it,TG there is this foum,which has already proved so useful.Thing is I am near my 78th birthday,how come I feel so well,and anna is only 71!!
thanks for listening and sharing folks!
 

Jude

Registered User
Dec 11, 2003
2,287
66
Tully, Qld, Australia
Dear Frederick,

So relieved to hearing from you again. You certainly sound much more positive now.

According to our GP and CP, Aricept should really be taken at night after dinner. Check with your GP, but I think I'm correct on this. In order to change the time of the medication, you will need to shift it back a couple of hours every day - not in one fell swoop. This may have caused her stomach upset.

Best wishes,

Jude
 

Norman

Registered User
Oct 9, 2003
4,348
Birmingham Hades
Hi Frederick
Jude is quite right ,my wife has taken Aricept for 7 years,always in the evening.
See a solicitor or a FA,I had a similar worry about wills but there are ways of creating a trust fund to allow for your early demise.
Norman
 

Lulu

Registered User
Nov 28, 2004
391
I have sent you a private message about this, but I am also looking into Trust Funds.
Also, my Mum has been taking Aricept for about a year now and I always give it to her at her evening meal.
 

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