Can you do too much for the person you are caring for?

[angelface]

I tend to agree with Cragmaid, the more you do, the more SS will let you do.

My mother always used to say 'my daughter will do it'. even when I was on my knees. But as everyone else has said, carers are constantly worried about keeping their people safe.

Could you speak to the memory nurse and ask her to clarify exactly what she means? Maybe she can see the caring is getting very hard for you, and this is her way of trying to help?

Anyway, she needs to make herself clearer, and maybe you could sneek in some help for your parents before it really does get too much.

 

[ASH74]

CMHT asked us to take a step back as we were giving in-laws a false sense of their own abilities....the thought was that their would recognise their need for support and engage with SS etc. unfortunately it never happened and I can't let them end up in a crisis situation so I am currently providing arms length support. The other issue it is much easier to maintain and support them than try and drag them from a crisis. Also these are our loved ones ......you don't want to let them sink ....as carers we aren't just ruled by our heads but also by our hearts.


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[malomm]

A lot depends on the state of the dementia sufferer of course. If they are still reasonably physically active (and therefore also potentially dangerous to themselves) then I think the answer is 'supervised independence'. I let my wife get on with as much as possible, because she won't sit still a minute, but have to hover in the background in case she needs help with a task. She is quite likely to leave a tap running and the plug in the washbasin, or turn a gas tap on and forget to light it. White goods are a no go area.
Also I daren't leave her alone in the house for any longer than a quick 20 minute shop.
Actually our situation is that she hates being dependent on me, or anyone else.
So what do outsiders know - nothing. I think you are doing things exactly right as you see and know your own situation.
keep smiling,
malomm

 

[bilslin]

Hi Linda thing is Yu know your parents and what the can and how they are. My mum just sits there watching me do all and more and never said leave that ill do it, she's gone past doing now. But a cw told me to back off because it was catching up with me. And as much as you want to do the lot for your mum and dad, its becomes to much and you have to let the pros do some, then you can keep an eye on the things you need to. I agree with CM the more you do the more they will let you, till it makes you ill. So Hun think about it,. I'm still very much the main carer but with has much help as possible. lindax

 

[Mango]

I would want to say to the memory nurse " that's an interesting idea, what research is that based on!"

Ooooh, yes, I am so saving this question for the next "helpful" suggestion one of my siblings makes!

 

[Optomistic]

Just Diagnosed with Altzheimers

My husband has just been diagnosed with Alzheimers and i am his carer. I do a lot of things for him but he still helps me with the shopping and hoovers round sometimes. His memory is bad so i have to remind him to take tablets and all his appointments for hospitals etc. His is very deaf and cant see very well so he doesnt go out alone. It is very stressful and a big responsibility.

 

[copsham]

Hello new member!

I have just seen your post. I am glad you have found Talking point it is a real support to me. Why not start a new post and ask anything you would find helpful. Even reading old posts is valuable to me.

Dealing with dementia is so stressful. I feel that Talking point is like having a hand held or a fall back position!

Also is there an Alzheimers Society in your locality?

 

[Eleonora]

I’ve just read this thread with morbid fascination, and a massive amount of indignation.
I believe there are probably one or two trainee Social/Mental Health workers reading this Forum as part of their training;
and I wonder if they could let us know how much time their syllabus allows for them to spend, ‘In the field’?
By, ‘in the field’ I mean, actually living, coping with, and observing Alzheimer’s and Dementia sufferers in their (the patient’s) own home.

And do they ever get to hear the endless Kafkaesque conversations between carers and loved ones.
.
There seems to be no connection between the text book leaning, and hands on experience.

How many 24/7 carers have completed their Health and Safety training; or any training come to think of it. I can’t think of any other full time job where a person,( no matter how willing or able to cope) is thrown in at the deep end without training, and then left in sole charge of a vulnerable adult.

No wonder we all over protect! We’re all terrified that we’ll make a single foolish, fatal mistake, and have to live with the guilt for the rest of our lives. We love our elderly, ‘children’, and will do everything within our capability to protect them.

Possibly your Social Worker would like to put her suggestion of , “Let them do as they like” in writing – just in case it all goes pear shaped.

 

[David1]

I can’t think of any other full time job where a person,( no matter how willing or able to cope) is thrown in at the deep end without training, and then left in sole charge of a vulnerable adult.

No wonder we all over protect! We’re all terrified that we’ll make a single foolish, fatal mistake, and have to live with the guilt for the rest of our lives. We love our elderly, ‘children’, and will do everything within our capability to protect them.

That is very well put. There is not just the "professional" responsibility that we untrained carers have to manage, but also the far harder "emotional" responsibility that will always be carried like the heaviest of loads. This is a burden that weighs upon those who are connected by love. We - who care for our family members out of love rather than duty - are judged by the most harshest of critics: ourselves. And we often find ourselves wanting, despite our sacrifices. We cannot walk away at the end of our shifts.

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[Linbrusco]

Thank you all for your comments.
I have a meeting with said Memory Team Nurse on Monday

I spoke with her again yesterday, and she said that Dad (with cognitive impairment) seemed quite frustrated.... Coping with Mum ... Yes
That he mentioned that we make all the decisions round here ( my sister & I )
We give Dad at every opportunity, his say so about things.
His reply for many years is " do what you think" or " I'm not fussed "
In the end Yes my sister & I do make certain decisions for Mum & Dad, even more so now that Mum has lost the ability to do so, as she was always the one that made decisions for her & Dad.

I think the Nurse has taken it to mean that we do too much for Mum & Dad, and we don't let Dad have any say on anything
She also said her meeting with Dad and memory/cognitive testing wasn't quite reflected in the questionnaires I had to fill out, and on discussing Dads lack of awareness of Mums Alzheimers. All I can say is Dad puts on one face for us, and another for the health professionals .

And apparently my sister,Mum & I won't let him work anymore (he was a painter & Decorator by trade) as we don't want him climbing ladders
Dads been retired for 13 years!

 

[Linbrusco]

How many 24/7 carers have completed their Health and Safety training; or any training come to think of it. I can’t think of any other full time job where a person,( no matter how willing or able to cope) is thrown in at the deep end without training, and then left in sole charge of a vulnerable adult.

No wonder we all over protect! We’re all terrified that we’ll make a single foolish, fatal mistake, and have to live with the guilt for the rest of our lives. We love our elderly, ‘children’, and will do everything within our capability to protect them.

Exactly. When someone loses mental capacity, there is that mindset of protecting them. You are now their ears and eyes also. Maybe at times I do fuss a bit much over Mum. I think it's only because I know the potential for what can and may go wrong.

 

[cragmaid]

And apparently my sister,Mum & I won't let him work anymore (he was a painter & Decorator by trade) as we don't want him climbing ladders
Dads been retired for 13 years!

.....this is why I always attended Mum's meetings and put a dairy note into the Nurse or Doctor's hand with an up to date status report.

 

[kingmidas1962]

One of my dad's social workers said that 'we have to allow people to make their own decision even if they are unwise' but my argument was ALWAYS that this only applies if they have the capacity to understand the consequences. For example - when dad first began to struggle at home he used to make his own hot drinks, and that was his *decision*. He scalded himself a couple of times because he didn't understand that his decision was unwise. There's a difference between making an unwise decision and making it while not comprehending why it's unwise in the first place.

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[Linbrusco]

I so agree KingMidas.
The first I realised things were going awry almost 2 yrs ago was when Mum would have burns on her hands, and couldn't remember how she did it other than when she must have been cooking. She hasn't cooked a proper meal for a year now, but will still do easy things like heat baked beans, or boil an egg.
There are so many things that Mum tries to do, but has lost the capacity to know of potential dangers in they way she might do things.
Using a dining room chair to climb on to reach something instead of a small safety stool that I got her.
Does she use a pot on the stove with a wonky handle or look for a better one... She chose the pot with the wonky handle

By the way the pot with the wonky handle was beyond repair... Does Dad throw it out... no he uses superglue and some electrical tape ... Still wonky
I threw it out

 

[kingmidas1962]

I remember talking to her and explaining what I meant in terms of a child and something hot ... the child would decide to get hold of the hot object but without the knowledge that he'd get burnt. Would you go ahead and let him pick it up?

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[copsham]

Oh kingmidas why is it so obvious to those involved on a day to day basis but not some of the professionals????

How can anyone make a decision about risk if they do not understand the concept of cause and effect. A person with severe dementia will burn themselves again and again without learning not to. So why should we let a person take that sort of risk if it is avoidable.

It is not just an unwise decsion but an unable to be worked out decsion!!

Why do people not understand dementia? My mother had a collapse and went unconscious t home last week. At the hospital a doctor, knowing she had dementia asked "Why did you collapse?" (!!!) My mother said she had had a car accident and the doctor believed her!!!

 

[sistermillicent]

I am rather horrified in retrospect when I think back to how mum used to complain that dad wouldn't let her do things and was interfering, and i thought badly of him for it. this was before we realised she had AD. Poor dad, he was the villain for quite a while.
I think everything about dementia is erratic and unpredictable, throw logic and common sense out of the window. In some situations this can be ok, but in day to day living it really isn't.

 

[Bree]

MOH seems to be the exception here. He needs me to remind him to take medication, change his clothes, remind him of appointments, drive him and attend with him, as I have usually to answer questions for him, BUT, he is physically capable of carrying heavy things for me, (I'm disabled), helping with easy tasks such as taking the rubbish to the bin, watering the garden, but more often than not he won't. I either get a 'no I don't think so', or 'in a minute', which means forget it, do it yourself.

I have to say I find this very frustrating, and after a hard day when I'm in pain, I am reduced to tears.

 

[Eleonora]

The thing is I am always astounded how many daily tasks become difficult for my OH - I used to be able to tell him "brush your teeth" - now I have to stand next to him, tell him which is his tooth brush, help him put the toothpaste on, remind him to spit out and not to swallow, and tell him to rinse his mouth out. Should I not be doing that and just let him muddle on? What's the point in that? Oral hygiene is important.

Hello Beate - My own dear chap is at exactly the same stage - he has a desperate need to clean his teeth, (frequently); but has no idea how to set about it.

It seems to me that, as advised by our SW's, you and I have allowed our partners to make their own decision about cleaning their teeth.
And then- we have become their, 'facilitators', to help them achieve their decision, without mishap.

This word, facilitate is bandied about a great deal in Social Care circles - and it is a useful word to use if one is being accused of interfering with our partners more questionable decisions.

An example of a costly wrong decision by a dementia sufferer.[/

When my 87 year old OH was less ill, he was able to walk with the aid of a three wheeled walker;
but he got fed up with the walker, and decided to go for a walk using a walking stick instead.
He got as far as the front door, his walking stick skidded away from under him, and he fell, breaking his hip.
It took six weeks in hospital, and four weeks re-training to walk before I got him home again. Obviously, I should have insisted that he should use his walker - but I didn't want to be too bossy.

 

[Witzend]

Why do people not understand dementia? My mother had a collapse and went unconscious t home last week. At the hospital a doctor, knowing she had dementia asked "Why did you collapse?" (!!!) My mother said she had had a car accident and the doctor believed her!!!

I do not understand why so many professionals are so clueless about dementia. I am sure a well prepared two hour session could make them aware - as long as it was delivered by someone who really understands the PRACTICAL REALITIES and it did not consist of a lot of waffle-speak. Is it the case that any training they do attend is usually provided by someone who only thinks they know, who has been on some waffle-speak course themselves?