Carers

[maggier]

Well today we have stopped the care agency coming in, having found out that the carers have not been able to get in to mums since Thursday last week, no one has phoned me, but we knew because mum actually said she had stood behind the net curtain but would not let them in. Also there are no entries in her book.

I had a lengthy conversation with the social worker and she agreed that at the moment mum is OK, my sister in law comes in each morning, does washing, gets mum breakfast, leaves her a sandwich for lunch and dusts and hoovers and tidies round. So really by the time the care worker did come in at lunchtime, there was not much for her to do (if anything).

We had a family chat and decided in light of the fact that the carers were not getting in anyway, we should maybe cancel them as I am sure there are people out there who have no-one to help them who need them more.

Mum has been a lot calmer since she started her medication, seems to be brighter in herself and is sleeping well (sometimes still says "people" are in her house at night time, but they don't seem to bother her) so we thought we would cancel the carers for the time being and see what happens.

The social worker has promised me that if (when) we need them again we can just start them up again very easily without any problems and has made sure I have all the contact numbers we need. She is also putting me in touch with an Age Concern liaison worker who will speak to us from a carers point of view and let us know what is available as and when we need it.

I know some of you will probably think we have been a bit hasty but what do you do if mum won't let them in. They have asked for keys, but mum would put the chain on and bolt the doors if necessary and we don't want her doing that so that we couldn't get in.

We know she cannot put the cooker on as we have disconnected it and she would only be alone for a couple of hours (she has not proved to be a danger to herself other than leaving the cooker on in the past) she just sits and watches Tv until one of us gets there at tea time to make her some tea or take her back with us for tea with us. then we go back to make sure she is ready for bed and to make sure everything is safe before she goes to bed and to give her tablets.

I must add that we have not stopped the carers in a fit of pique, we just feel that it is a shame to have them standing knocking on mum's door and not getting in, also it is a waste of their time, which could be valuable to someone else. We know at present mum is OK and we know they are there again should we need them. I don't want anyone to think we did this in an angry way because we did not, we are just trying to be fair and our priority is mum's welfare, but we do know she is really as well as she can be at present, and we betwen us, as a family, we are doing a fine job of looking after her.

Maggie x

 

[connie]

Maggie, don't see what else you could have done. I do think they should have contacted you when she would not let them in, but apart from that, you were gaining nothing from their visits.

It is good to know that you can easily get services put in place again should you need them.

Do hope things settle down for you for a time. Connie

 

[Lynne]

Margaret

I'm not usually a 'yes-woman', but on this occasion I do agree 100% with Connie, in that you did what was appropriate given the circumstances. I hope Mum (and therefore you & your sister in law) continues to benefit from the medication.

 

[rummy]

Hi Maggie,
(My grandmothers name was Maggie ) Sound like you are doing a great job and you are the best judge of how to take care of you Mom. They do get a bit paranoid don't they!
Debbie

 

[maggier]

Hi everyone

Thanks for all your support. We were worried that we may not be doing the right thing (but hey! what is the right thing!). We know that things change and we know that we can call on the social worker to get things back in place should the need arise. I have read many times onTP that you have to take each day as it comes and I think that is what we are doing. Why cause mum unecessary stresses, when there is no need. (plus I got 'brownie points' off mum for stopping the carers from calling!!)

She is happy at present, so if mum is happy, we are happy.

Hugs to all

Maggie x x

 

[Lila13]

It was strange no-one phoned you when the agency care workers couldn't get in, Maggie.

Glad that your mother has enough help from you and other family members not to need them at present, and that Social Services will rearrange them if they are needed.

It is good that she is only alone for a couple of hours and is willing to watch TV.

I just hope my mother will continue to cope with the care workers, as even if they don't do as they are told, and don't do what they write in their file, they are better than nothing. We are all too far away.

My mother can and does use her unsafe gas cooker, though I am impressed by the fact that she's learned how to use the microwave, a few months ago she wouldn't have one in the house, and was not at all happy that it was installed while she was in hospital.

And watching TV is one of the things she's sadly given up. When she asks me what I've been doing, if I mention watching one of the programmes she used to enjoy, she says "I can't think how you can waste your time watching that". Almost every indoor activity anyone mentions as a hobby or other interest is a "waste of time" to her now. And she spends far too much of the time gained lying in bed.

Well, there is nothing we can do about that.

Lila

 

[Brucie]

Lila

Almost every indoor activity anyone mentions as a hobby or other interest is a "waste of time" to her now.

This always seems like something unreasonable, doesn't it? I tried every way with my wife to maintain her interest in things, but to no avail. I would get very frustrated until I realised she was simply being logical and responding to the growing fog of dementia.

I realised that, if the mind can't concentrate on the meaning of words, then reading becomes a "waste of time". Until she stopped entirely, jan would sit reading and re-reading the first sentence on a page, unable to proceed, partly because whe could wring no meaning from the words, partly because she would forget she had already read it.

With TV, Jan lost the ability to differentiate between what was happening on that little screen, and what was real life. She also could not retain the previous several minutes in her mind, and so every succeeding minute was meaningless to her.

I like to think that dementia patients also have the most sensible approach to TV - 95% of what is broadcast is absolute tosh, unworthy of our time.

she spends far too much of the time gained lying in bed.

When dementia grows, there are two things that they seem to do. Firstly, they may just sit around, or stay in bed. Secondly they may walk around continually, never resting.

I found the walking around the worst of all as at least I could join Jan on the settee and we could sit together. She would get edgy is I followed her around. Sometimes she would just follow me around, and then I got edgy!"Far too much time..." well, that's a judgment from someone who does not have dementia, and we all do that. Much as we'd like them to do something - anything - to keep their mental facility, it ends up a bit like King Canute, trying to turn the tide...... doesn't work.

There are some things we can do that are effective, at various stages of the development of dementia in a relative/partner; there are things we can't do, either now, or in the future. I found it best to concentrate on what worked the best at a given time, and, while I would revisit everything from time to time, to see if anything had improved, I would accept that faculties were lost when they had truly gone.

It's a difficult time you're in at present, one of many that happen. Best wishes.

 

[Lila13]

Well, it's also the nurses, complaining about me "letting" her stay in bed, getting bed sores.

As if there were anything I could do to stop her, especially as I don't live there.

(She likes going for walks, and gardening, weather permitting, but then there's the higher risk of falls.)

I gave up following her around (which is why I've never actually seen her falling), and managed while I was staying there to stop her following me to the loo.

 

[Brucie]

Lila

How I sympathise!

Yes, bed sores are certainly to be avoided if possible, and it is all very well for nurses to state the obvious, but then they don't actually do the caring!

We can only all do our best, in our own circumstances.

Since the nurses 'know best', then perhaps they can say whether the Wallace bed from Wallace and Gromit is available from SS, so Mum could be slid down a chute to breakfast, to prevent bedsores.... [I'm assuming here you have seen the animations]

 

[Lila13]

No, I haven't seen the animations, but I am sure someone somewhere has invented a bed which folds up at a set time in the morning and then unfolds at a set time in the evening, stopping people from going back to bed during the day. But I know my mother wouldn't buy it.

Lila