What do i say?

doris

Registered User
Oct 3, 2005
23
Hi All
I have looked after my friend ,who has Lewy bodies, for 2 years and because it is up and down all the time i have never had respite as i have felt it would take so long to get him back on track it wasn't worth it. He has been very confused and very jealous of me of late and i feel he wouldn't really get any worse by going.
What do i tell him because he wouldn't understand that i need a break as there is nothing wrong with him!
Do you lie out right and hope he doesn't remember, i feel guilty as i know its going to upset him. I would be interested in anybodies ideas or methods they use.
grateful for any input
Doris
 

Brucie

Registered User
Jan 31, 2004
12,413
near London
Hello doris, and welcome to TP.

First of all, well done for the two years caring! It is never easy and you have done well.

Regarding getting respite I do suggest a few well placed untruths.

The one I would use is that you need to go into hospital/visit a distant relative/go on jury service/etc for a few days. Just fill in something you are comfortable with.

We all need a break sometimes and it is better to do it by ourselves than having it forced on us for health reasons later on.

Best wishes
 

Tender Face

Account Closed
Mar 14, 2006
5,379
NW England
Brucie said:
.....a few well placed untruths.
Brucie, I will hold that phrase and try to savour it...... had such a great day with mum today but STILL haven't told her we plan two short breaks over the school summer holidays without her ..... doesn't seem much to ask - but don't know how/when to tell her .... don't feel like I am currently 'telling lies' but definitely 'withholding the truth'..... it's going to have to 'out' soon......

Doris, 'welcome' - find so often here that what appear to be totally different situations can proffer parallel or similar problems .... and more often some wonderful ideas for solutions!!!

Love, Karen (TF), x
 

Norman

Registered User
Oct 9, 2003
4,348
Birmingham Hades
Hin Doris
I prefer white lies,doesn't sound as bad as untruths.
I have just had my first respite my lie:gone to a meeting in London,having to stay overnight.
This one lasted for 4 nights 5 days.
I try to model the lie on something which I may have done in the past,I think they seem to be more acceptable.
On my return Peg said "was your meeting alright".
Good luck
Norman
 

Dearth

Registered User
May 27, 2005
468
48
Wigan
www.freewebs.com
Hope I'm not butting in here Doris... I'm a 'Healthcare Professional' as opposed to a 'Carer' as such... but I can give you my opinion if it's okay...

In my job, I try to be as honest as possible - by that, I don't mean that I have to be blunt...

If someone asks what they are in hospital for (I work on a Dementia Assessment Unit), I explain in many different ways, all of which are valid at one point or another:

1. We're trying to get your tablets right, so you'll feel better.
2. We're waiting for test results to come back... when we know what they are, we can let you know too.
3. Have you been having trouble with your memory? We're trying to help you with that.

There are many more examples... each are valid when used appropriately depending on the person's insight/mood, etc.

So maybe you could say to your friend that you need a break, and you want some time alone - that way, you're not lying - you're just not being blunt or direct (such as saying "I really need a break from you as I am getting stressed here").

I often feel that when a person is accepted for treatment in hospital, it can be beneficial for the family too, as it gives them a 'break' - the downside of that is the feelings of guilt that some people express by feeling that they have 'abandoned' their loved one - but hey - we all need time to ourselves! It's okay for me - I do my shift and come home... okay, I'm there again the day after, but I'm afforded that luxury - a lot of carers don't have that.

Sorry if I've waffled here, but I hope my words are of some use to you.

:)

My regards to both you and your friend Doris - take care.

Neil.
 

Blue_Gremlin

Registered User
Mar 15, 2006
89
40
Morecambe, UK
My situation is slightly different with Jean in that we don't live with her. Not that we don't do all the running around and organising and worrying (a lot cos of the distance), we do - and then some. I have taken to hating the sound of my phone for fear of what has happened now.

So from my point of view we are looking at respite from Jean's perspective. She is getting more and more confused and we keep finding her in bed during the day (do other people have that problem??) and I know full well she is lonely as she is demanding to know exactly when we are visiting again and she has never done that before.

So I was thinking along the lines of 'we have sorted a holiday for you, in morecambe near where we live so we can take you to the seaside etc etc'. She used to holiday here so am hoping that would appeal to her, and the being near us - not that she has much perspective on proximity but it would mean I could visit her more often (is difficult at the moment as I don't drive).

I was hoping that once she was in the home and interacting with people to combat the lonelyness she might, when we bring her home again, want to 'visit' again for longer and that would make getting her permanently placed easier. Am I being over-ambitious??

Anyway making it a holiday for her seems to be my thinking on the topic.

Hope it helps (and hope it works when I have to impliment it!!)

Blue_Gremlin
 

Margarita

Registered User
Feb 17, 2006
10,824
london
I don’t think they ever understand you need a break I even get that feeling of jealousies and that’s my mother I look after.

We our talking hears brain damage that is happening with our love one , my advice is organise the respite tell them the last moment other wise it plays on there mind like a scratch CD there get angry & confused , well my mum did when I told her 2 weeks before I was going had to tell that I was not going , then when I told her the last moment she was ok with it , then said that I plotted it all behind her back , ok I did to spare me from the lack of understanding on mum part ,because of the brain damage that is coursing it . did not say that to her , but for your own sanity take the respite I always say to my mother I am going on holiday , you could say that your going on a course for a week to learn more skills on training to be a carer , just that my mother does not understand what a course is , she understand holidays
 

Margarita

Registered User
Feb 17, 2006
10,824
london
Blue_Gremlin

My mother like that sleeping a lot , better finding her sleeping then wondering out on the streets when she confused , My mother is at the stage that see how not be left on her own for more then half an hour.

How is she copeing with the gas cooker Or the electric cooker, kettle , any open fire heaters she may have in the house when left alone in house is more of a worry

I use to worry about it a lot i(sleeping)f mum does not go to day centre twice a week she would sleep wonder around sleep even when I try to motivate her with card games kitting her concentration is not good , only teenagers walking in out and talking about boyfriends seem to pick mum up other wise she go back to sleep , oh its not sleep mum tell me its napping
 

Margarita

Registered User
Feb 17, 2006
10,824
london
Mum tell me she lays there & all the memories of her part come flying in to her mind & ask me why that happen ? then tell me about it , when she wants if I ask her what she thinking about she says there her thought does not want to share them , but when she does its always story from way back when I was littlie, so really if I can get my mum to talk its about the past, but she still know her grandchildren just get the names mix up

Well who would not :eek: My daughters are all M Monique ,Marie ,Marisa .
 

mojofilter

Registered User
May 10, 2006
130
St.Helens
My mother goes into respite for the third time tomorrow.... The first time I told her weeks in advance and they were lots of tear and tantrums but on the day she went in without and problems and enjoyed her stay.

The second time I told her the day before that we would be going on separate holidays and that she would be staying in a hotel and that I'd pick her up in a weeks time. No tantrums and the once again the period of respite went without any problems.

Yesterday I told her that she'd be going back to the hotel that she stayed in last time and she was fine with it....

I live with my mum, care for her 24/7 and although I hate putting her into respite I now realise that I do need to make time for myself to recharge my batteries every now and again..

Good Luck,

Paul
 

mel

Registered User
Apr 30, 2006
1,656
62
Sheffield
Hi Paul
does your mum go to the same place each time for respite?
I've found a place I really like but can't "book " in advance....if they've got vacancies they'll take her....
Wendy
 

mojofilter

Registered User
May 10, 2006
130
St.Helens
mel said:
Hi Paul
does your mum go to the same place each time for respite?
I've found a place I really like but can't "book " in advance....if they've got vacancies they'll take her....
Wendy
Hi Wendy,

The centre that she's going into tomorrow is the same one that she spent her last period of respite in.

I wasn't really that impressed with the first place that she stayed in but I'm more than happy with the home that we're using now. Plus she might be able to go there as a full time resident when I'm unable to care for her anymore.

We're lucky because we can book her place months in advanced through out SW..

All the best,

Paul
 

mel

Registered User
Apr 30, 2006
1,656
62
Sheffield
Thanks Paul....I can arrange respite through SW but I<m led to believe that as mum is self funding it costs more to do it that way but I'll have to check that withthem(I don't always take everything in!!!) plus all the respite that they arrange do not lead to a permanent placement if we want this at a later date....they are put into non residential placements.....
The place I have found is quite nice and mum could go there for a day,possibly overnight if they're not full,leading up to a week or two(again if they've got a vacancy) and then permanently if or when I can no longer cope...
Why can things never be straightforward....? Gives me something to do I suppose!!!:rolleyes:
Wendy
 

pammy14

Registered User
Dec 5, 2005
103
leicestershire
I also tell my sister on the day she is going to respite then it is easier. Also do the same for daycare just tell her 5 minutes before the taxi or mini-bus is coming. Always says she doesnt want to go, but goes with a bit of chivvying. We have same trouble with respite. The one we use through SS only take respite not residential care. I have just booked provisionally a place in august at a private care home hoping if it goes well it may be a way of getting use to it for the future but you never know when they will have a vacancy.
 

DickG

Registered User
Feb 26, 2006
558
84
Stow-on-the-Wold
Neil

I was interested in the points you raised, forgive me but your views are as a professional who is not open to emotional blackmail and however much you care you do not have family ties.

We carers are open to emotional blackmail and and bear the burden of the Guilt Monster and in order to alleviate the effects of both and to limit the time our loved ones suffer anxiety we lie (white, untruths, call them what you will) and I do not feel guilty for doing so.

Dick
 

Lila13

Registered User
Feb 24, 2006
1,342
My mother knew that the social worker arranged the respite place because she went out after dark and had a fall and the people in A & E said they didn't want to see her again. She also knew it was only for 12 days. When we went to look at the place beforehand we were talking about "only 12 days" and one of the long-term residents woke up and said "that's what they always say". I don't think anyone told my mother she'd have to pay for it.

They were used to people going in for several short visits before going into permanent residential places, I'm sure that is what they were expecting her to do.

My mother already knew about that place because of neighbourhood chat. The nurses and the carers all knew people who'd been to stay there.

She was quite co-operative about going in. Aferwards she said it was "sometimes lovely and sometimes horrid". (A bit like you then, I said.)

The worst thing was that she hit two of the carers who were trying to give her a bath. And she loved baths.

Lila
 

Brucie

Registered User
Jan 31, 2004
12,413
near London
DickG said:
I do not feel guilty for doing so
..and that makes the difference between a health professional, who has to adhere to rules and regs and [as with Neil] sometimes common sense and sensitivity - and we carers.

In essence, we can't leave at night to return to a normal world. We have to stay where we are with dementia as an unwelcome guest and live life for real, not from a text book.

Not getting at anyone here, least of all Neil, it is just how it is.
 

Tender Face

Account Closed
Mar 14, 2006
5,379
NW England
What strikes me in this whole thread is that none of us - carers or 'professionals' are comfortable with the truth, or about how much those we are caring for understand the 'truth', how much we should tell the 'truth', whether it is fairest to articulate or avoid 'the truth' ... when any 'decent' person has been brought up to 'always tell the truth'......

Is it just me, or is it that dementia and care for sufferers throws up so many moral/ethical dilemmas that makes this journey so hard??????:mad::confused:

Karen (TF), hmmmph
 

Dearth

Registered User
May 27, 2005
468
48
Wigan
www.freewebs.com
DickG said:
Neil

I was interested in the points you raised, forgive me but your views are as a professional who is not open to emotional blackmail and however much you care you do not have family ties.

We carers are open to emotional blackmail and and bear the burden of the Guilt Monster and in order to alleviate the effects of both and to limit the time our loved ones suffer anxiety we lie (white, untruths, call them what you will) and I do not feel guilty for doing so.

Dick

Dick - I fully agree with that statement - the 'guilt' comment was based on conversations I have had with relatives... not one specific person or area (obviously each situation is different).

I DO realise the emotional blackmail... we've had patients who are okay with us, and generally appear quite settled, yet as soon as the relative comes, they may say something such as "why have you put me in here?", "what have you done this for?" etc.

And, many times once the loved one has gone, they appear to be more settled... no anxiety, integrating well with everyone else, not appearing to be low in mood etc. etc.

And, as I said, I have the luxury of going home after a shift - in fact I'm day off today... and although I am back at work tomorrow, that is through choice - so I can appreciate the burden of a 24/7 situation even though I don't have to deal with it at this present point.

This is where I feel it's great if there is any daycare provision available - to give both the 'carer' and 'cared for' a break (often the former which is just as important in my opinion) - the area where I live there are a few available so I can't knock that service.

As to telling lies or 'untruths' or whatever - yep, I realise how hard that must be... for me, it's my job to do otherwise, but then again it's part of my training... if it's easier for a carer to say "I'm just nipping out to the car, I'll be back" before driving off home (because it would distress the Person with Dementia if the truth were told) then I can undersatnd the reason being to minimise distress.

Again - I feel that this is situational - no two situations will ever be alike.

Sorry if I've waffled, I just wanted to say that I support what you say here, but to give you a bit more 'insight' into how I tick.

My best wishes.

:)

N.
 

Lila13

Registered User
Feb 24, 2006
1,342
I tried not to lie to my mother because she would have seen through it and trusted me less thereafter. But that was because she was still at the "mild" stage.

I did say when she complained of memory loss or words getting mixed up that it was partly because she wasn't eating and drinking properly, and that was partly true, the more I managed to persuade her to eat and drink the clearer her speech became, but that couldn't go on indefinitely.

I did postpone some controversial discussions by saying e.g. let's talk about that that when ... is here.

Lila