• Expert Q&A: Rare dementias - Tues 3 March, 3-4pm

    Our next expert Q&A will be on the topic of rare dementias. It will be hosted by Nikki and Seb from Rare Dementia Support. If you have any questions about rare dementias, they will be here to answer them on Tuesday 3 March between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

A Bad Week

twink

Registered User
Oct 28, 2005
265
67
Cambridgeshire UK
I will have someone with me Cris. I have a cousin staying with me. Every time I went to see Steve at the hospital, I came out and I felt terrible and I always had a headache and my shoulders were really tense. It was always a good couple of hours before I felt better. I had to come out of the hospital, walk to the bus station and then go 10 miles on the bus and then a 20 min walk home. At least I have a lift now. Steve only has me to visit him as the family are in Hertfordshire. We moved up to Cambridgeshire 3 years ago before I had realized Steve was ill. His daughters have been once since he went in hospital 6 months ago. One is getting married at the end of May and he can't give her away, he can't even go to the wedding, he hasn't a clue it's even happening.

I'm going to have a tipple too. Can't be bothered cooking so it's egg and chips tonight and a glass of something!!!

Sue
 

cris

Registered User
Aug 23, 2006
326
70
Chelmsford
Sue, Cambridgeshire is a lovely part of the country. It is really sad about the wedding. Have his daughters expressed anything or feelings ?
I love cooking. I confess - hands up - no ready meals from this bloke. But Susan ( and myself) do enjoy ham egg chips beans (baked) with crusty bread (i don't make that - one thing i or my bread-make can not master) & butter and maybe a mug of tea. It's as quick to do pasta and fish - yummy.
enjoy your glass of wine. I'm having a whisky by the fire. Bl***y cold out
cris
 

twink

Registered User
Oct 28, 2005
265
67
Cambridgeshire UK
His daughters are busy. Apparently. One does lives in Clacton on Sea and has 3 children so it's hard for her to get here, the other is in Herts and works in the City and is planning her wedding at the weekends. The eldest one did moan about me not taking her Dad 'out for the day' to the wedding and can't really understand why I've said it's not possible. It's in Croydon too and a late afternoon wedding so it means a stay over but the one who's getting married understands completely why he can't be there. they both keep saying when they get time, they will visit. My son has told them if they want to visit, now is a good time! (Steve has 2 daughters in their 30's and I have 2 sons the same age, my youngest son and his youngest daughter are very close) They just seem to think that he will be around until they aren't busy. the psychiatrist told me last October that he possibly has 2 to 3 years.

Cambridgeshire is a lovely place and I love it here but it would be so nice to be back in Herts near my family now but it's not possible and moving would mean I had to put half of what I got for the house towards Steve's home fees and properties are so expensive down there. I also couldn't put Steve through moving to another home either.

I fancied egg and chips but haven't enjoyed them!

You're right, it IS bl***y cold out so I have my drink and my open fire going!!!

Sue
 

olivej

Registered User
Mar 13, 2007
2
Nottingham
My mother was diagnosed just before Christmas, I decided that I would not tell her the extent of her problem, her doctors agreed with me we just told her that her problems were due to depression and once she started to take her anti-depressants again she'd feel better. Christmas was horrendous, we went to my daughter's. The change in venue disorientated her and as far as she was concerned I was the devil incarnate, she would not have me in the same room as her. Mainly because I had not told her that we exchange gifts at Christmas. It is not often that I get all three of my children together as they all live in London and I am in Nottingham. I know it sounds mean but I am already dreading next Christmas. Also the cost of driving to London both financialy and physically is wearing me down but as an only child I feel that I have to do it. She claims to never have any visitors, this I know is not true. I have a godmother who although in her 80's herself is a godsend. Westminster Health Care for the Elderly are also excellent, I cannot fault them. I keep in regular contact with them through e-mail and telephone calls. I don't know what they think of me as mother continually lies about me to them-I never go to visit and when I do my partner (who she's never liked) only makes himself lunch and leaves her to go hungry.
She has been put onto Aricept, that's when she takes it. Her medication is in dosette boxes, but last month she was given 4 boxes and when I was there for mother's day I noticed she'd taken tablets out of all 4 boxes so I could not see what ones she had missed. So Monday led to another e-mail to care workers. My children go to visit their gran, but are getting wary as they are often accused of stealing things- her stapler & A-Z of London spring to mind. Even when you find them she does not acknowledge that they've been found.
I would like to move into sheltered housing but she is refusing, here again the care workers are working with me. She can be very aggressive and this is stopping some of her friends from visiting- if I explained this to her would it have any effect?
I feel a lot better after having that rant-just ignore me, I'm sure there will be more to come. Another question will I ever stop feeling guilty about feeling angry that this has happened not only to my mother but to me? My youngest left home last August- oh good I thought now I can do what I want and then this happens. As they say life's a bitch and then you die, I'm beginning to see the truth in that!
 

connie

Registered User
Mar 7, 2004
9,519
Frinton-on-Sea
Olive - welcome.

Never feel guilty at having a rant, personally I find it therapeutic. So sorry that you are having such a tough time trying to support your mum.

Please feel free to 'talk' here anytime. You will get lots of information and advice.
Take care,
 

Margarita

Registered User
Feb 17, 2006
10,824
london
Hi olivej


Another question will I ever stop feeling guilty about feeling angry that this has happened not only to my mother but to me?
For me the anger gone & still trying to come to terms with it all after 5 years , still trying to get my mind around the change in what has happen in my life

She can be very aggressive and this is stopping some of her friends from visiting- if I explained this to her would it have any effect?
I don’t think if will , if like my mother she think in her reality they nothing wrong in not wanting her friends around she happy in her own littlie world , that does not understand logic any more, and I just end up getting frustrated , in trying to get my point in the past so I don’t try .

Try it see what happen , just understand stand back and look at it as outside of the equation , so you don't get frustated when she does not listen to you .

You never know on the bright side , you mother mood may change when the medication gets into her system how long has she been taking them

Also your find in the future, that your have to hide the medication that only the career no where they are so they can admitters then to your mother , as my mother would get then all mix up also and not take them at the right time or not at all
 
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Grannie G

Volunteer Moderator
Apr 3, 2006
70,399
Kent
Hi Olive, welcome from me too.

Rant as much as you like, that`s what TP is here for, [one of the things]. I would want to rant too, at the prescribing of Aricept, to someone diagnosed with Alzheimers, and the expectation that they can be responsible for their own dosage. It`s ludicrous.

My mother had a dispenser and she played with her tablets like tiddlywinks.

I can also well understand how frustrated you are that once again, your life is not your own. The best laid plans etc. don`t work out do they.

Well I hope you find support here. It might help a little bit, to share your frustrations, anger and guilt with those who know.
 

cris

Registered User
Aug 23, 2006
326
70
Chelmsford
Love my wife - so why do I help her to live in hell ?

Welcome OliveJ sounds to me you are doing and trying extremely hard. Well done.
TwinkSue. Clacton is not far for his daughter to travel. I live in Chelmsford and I can get to Clacton in approx 1 hr, Cambridge centre 35min. It strikes me that they cannot be bothered or choose to blank their mind to Steves illness. Do they understand the illness ? Believe it or not some people just think "oh they lose their memory". These people cannot work out what that entails.
cris

ps ignore the title that was for another posting / rant of mine
 
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Grannie G

Volunteer Moderator
Apr 3, 2006
70,399
Kent
Dear cris, What`s the alternative?

We are on a treadmill and there`s not way off, we just have to keep going on and on and on.

It`s a matter of conscience. We can`t be neglectful, re medication, hygeine, nourishment. We just have to keep trying to do the best, as we see it, under the worst of circumstances.

Hope you get some help from the doctor .

With love
 

cris

Registered User
Aug 23, 2006
326
70
Chelmsford
Sorry Grannie G. I meant to start a new thread, but you were too quick before I cut/edited/pasted :)
But I know we have no choice, I would not want it any other way 'cos I know next week there will be a cure.
cris
 

twink

Registered User
Oct 28, 2005
265
67
Cambridgeshire UK
Morning Cris,

You have said what I often think but, what can you do. I'm actually 30 miles north of Cambridge but I know it does only take a couple of hours, maybe a bit more. I don't think it's 'quite' a case of can't be bothred but they definitely don't understand the illness although I have explained in detail. At first I didn't want to upset them too much by saying how bad he really was but now I do. I tell them everything I know and my son has told one of them that she shouldn't leave it too long or he won't know her. I'm not actually sure who he knows. Friends came up when he first went in hospital and he would smile at them so they thought he knew them, I just think he recognized them but wasn't exactly sure who they were. I think with his girls, it's just a case of they are too busy with their own lives and they really don't understand that the longer they leave it, the more he may deteriorate. I love them dearly but they are selfish. I say that because they always have been but maybe they will regret not making the effort one day.

Welcome to Olive. This IS the best place to be. I don't usually post much but I'm in here reading many times a day and it is very helpful and comforting to know so many people are unfortunately in the same boat as you.

Love Sue
 

Skye

Registered User
Aug 29, 2006
17,000
SW Scotland
olivej said:
Another question will I ever stop feeling guilty about feeling angry that this has happened not only to my mother but to me? My youngest left home last August- oh good I thought now I can do what I want and then this happens. As they say life's a bitch and then you die, I'm beginning to see the truth in that!
Hi Olivej

Welcome to TP.

You don't have to feel guilty about being angry. We all go through periods of feelng that way, and it's made worse by the sheer frustration of trying to get someone to listen. At least on TP there are plenty of listeners, so rant away.

Our circumstances are so different, but we all have reasons to feel angry. In your case you were looking forward to being able to run your life to suit yourself, after years of bringing up a family.

Many of our members are still bringing up young families, and trying to juggle that with caring for a parent with AD.

Others have been married for very many tears, and are angry and upset that their partner is gradually leaving them.

In my case, my husband and I had both been widowed. When we married we were looking forward to a happy retirement together. Four years after our wedding John was diagnosed with AD.

So don't apologise for your feelings, we all understand them.

Love,
 

Skye

Registered User
Aug 29, 2006
17,000
SW Scotland
twink said:
I tell them everything I know and my son has told one of them that she shouldn't leave it too long or he won't know her. I'm not actually sure who he knows. Friends came up when he first went in hospital and he would smile at them so they thought he knew them, I just think he recognized them but wasn't exactly sure who they were.

...................

they will regret not making the effort one day.
Hi Sue

You're so right. My youngest step-son was up for a few days this week, the first time for six months. Yes, it's a long way from Harrow to Dumfies, they're both working and have a young baby ..........but.....

John knew he knew him from somewhere, but didn't know where. We tried everything to explain to him, but he was so puzzled, not helped by the fact that his problems are all language-related.

I know it was upsetting for his son. I don't know whether that will make him come up more or less often. We'll just have to wait and see.

Love,
 

BonnieRose

Registered User
Mar 27, 2006
16
taunton
dear sue, I'm so sorry I thought it was your father and not your husband, it must be even harder for you.
Glad you are visting on sunday I'm sure it will be a relife for you both. Initially I took mum out side to walk around the gardens and then the surrounding area of the home, after two weeks I started to bring her home for a few hours or tea in the garden centre. As it's a secure home I think she feels locked in, so I hope that this shows her she can still have a bit of normality-I feel I want to give her the best I can while she still knows me.
Hope this helps, love remus x
 

cris

Registered User
Aug 23, 2006
326
70
Chelmsford
Hello Sue. One of our 2 daughters is always busy. She is a child minder, lives North London (about 1 hr drive) but always wants to come one day in the week with 2 or 3, 2yr olds. Her weekends are busy, but not too busy to go to a market 10miles away. I always tell both our daughters the (negative) progress. What they do is their choice. Our local daughter is good and see's (is that bad grammar) Susan once a week and takes her out. Susan looks forward to it. Our other too busy daughter (heart of gold, means well and talks a good story) last phoned Susan on mothers day. She has phoned me 4 times to talk car problems, computer problems, and to book her holiday in Jamiaca. She is very aware of the deterioration and progress. I have come to the conclusion it is better if she does not 'phone because Susan then thinks she is going to see her and maybe go out, and it takes me all day / night to say it is not going to happen.
I think it is best if you just tell them how it is, the choice is their's then and they cannot say you did not inform them.
goodluck
cris
 

twink

Registered User
Oct 28, 2005
265
67
Cambridgeshire UK
Hi Remus,

Don't apologize for thinking Steve was my Dad, how were you to know lol. It's hard for all of us isn't it but when you have a young person with dementia, I guess we think it's worse. I'm going to go and see Steve on Saturday and I have to say I am dreading it. It's been over a week and the home and staff are new to him so I know he will be upset when he sees me and upset when I leave again. He's been in hospital for 6 months and he's never been outside in all that time apart from a trip to the hospital to see the rheumatologist. No-one ever asked me if I wanted to take him out. My friend is a nurse at the hospital he was in and I asked her why no-one suggested it and why he never went to the day hospital with the other patients and she said because he isn't well enough. He did go to the day hospital 3 or 4 times when he was still at home last summer but he refused to sit down and do anything so they said it's not worth him going.

Steve doesn't have a clue where he is and he wanted to go home when he was living here at home.

Love Sue
 

twink

Registered User
Oct 28, 2005
265
67
Cambridgeshire UK
Hi Cris,

'Our' two daughters are actually Steve's daughters and not mine but I am very close to them. One rings me to ask how he is regularly but this is the one who's getting married and is planning the wedding and her fiance has two children also so they have those to stay weekends so she says, when they get a free weekend, they'll try and come up to see Dad. I don't know if she thinks that if she comes up in a few weeks or months, he will be the same as he is now. Having said that, she knows he's deteriorated a lot in the last 6 months. The other one doesn't ring to ask how he is but I email her and tell her exactly what's going on. Sometimes I get a reply. I know they care but they are busy and everyhting else comes before Dad obviously.

I was a childminder just outside North London funnily enough and at the ripe old age (??!!) of 54, I'm going back to being a childminder. I love kids and did it for 16 years down there, it's something I can do part time now and get to meet people, after living here for 3 years I don't know many people being Steve's carer and not getting out much. Another reason for being part time is that I don't want to have to take people's children to the home when I go and see Steve, I'm sure parents wouldn't like it at all though obviously I'd have to have their permission but I don't think I can face working all day and then visiting Steve in the evening. I'd be drained.

I email them both and speak to one on the phone to tell them exactly how their Dad is for exactly the reason you say, they can't say they didn't know, I've informed them about everything. Then there's his sister who lives on the South coast. They fell out about 12 years ago and haven't spoken now she feels guilty and asks whether she should come and see him! I said probably not. Apart from coping with this awful illness, you seem to have to make a lot of decisions too about 'other stuff'!!!

Sue
 

cris

Registered User
Aug 23, 2006
326
70
Chelmsford
Sorry TwinkSue, can I ask why you think Steve has deteriorated fairly quickly. I could see the "signs" in Susan in 1996. Finally paid private in 2001 for confirmation. Susan has been on aricept since. Yes she gave up driving 2 & half years ago, I became her carer. In the last month a big deterioration, and in the last few days a noticable decline. She is crying a lot more, is sorry more, is frightened (understandable, but she expresses it more often) and I think will need help to feed herself. Cannot work out which hand for thr spoon or fork and cannot control the hand motion. Everyday she is saying she does not know if she is coming or going. Also is very quiet.
cris
 

ROSEANN

Registered User
Oct 1, 2006
909
71
staffordshire
bad week

Hi Chris reading your last post was like reading my week.
My husband John has gone down bank so much this week even though he has been on Aricept for 12 months, he is crying all the time saying he would be better off in his box.
I have to be careful what I say or he gets very agitated and upset refuses to take his tablets saying they are killing him.
All in all a very bad week, take care
Roseann
 

cris

Registered User
Aug 23, 2006
326
70
Chelmsford
Roseann. I had that all this afternoon, and this morning. Susan had a good cry. I mean sobbing. She wants to die. First time she has said die. It's usually "don't want to be here". Takes her medicine ok. I think it has cleared her "system" and she had some egg & beans on toast and a good cup of tea. And is now very chatty. Next hurdle will be bath & bed :eek:
cris