thoughts

[Lulu]

Hello everybody. Can I just air a few thoughts with you?

Mum is now being referred once again to Social Services as apparently we need them to access any sort of day care. As well as this, we are looking into other sorts of support with the AS, which I shall know more about next week.

Prior to seeing Mum's GP, I felt confident that asking for a little more support was OK. Mum is very good as she will sit tight at home and await further instructions, and would happily sit there for months probably, not being aware of time passing. Her well-being is my worry only -she isn't concerned about anything very much, so far as I can tell. I now feel guilty again for having even thought of sending her to a day centre, even though we have reached the stage, I believe, that to give her any more than I am already providing, would mean giving up my life totally. It's a huge mental tousle for me -shouldn't I be doing just that?

She doesn't need much physical care other than going up to ensure she gets in her shower, changes her clothes etc. I provide all her food, and I supplement my meals with frozen ones which, until yesterday, I thought she was managing. I discovered she was letting them defrost prior to cooking -and they're supposed to be cooked from frozen. Yet by the time I have done these things, plus all the million and one other things (mail, finances, tablet,appointments etc etc etc), my days fast disappear. Some days I no longer know where to begin, there is so much to see to, and I end up doing nothing.

I don't wish the SS, the AS or anyone else to think that I really have nothing very much to complain about, that it's too early to think of Day Centres etc. I don't want people to think I'm unable to cope when others do at this stage.
Am I right to be doing this? It isn't that I can't cope with looking after her, just that I no longer have any energy to deal with any sort of life here. Plus I want her to have something pleasant to do.

You can tell me what you think -please be frank.

The Aricept was discontinued for 2 weeks to see if this was causing the headaches etc, but symptoms continued and the Dr has said she must start them again.

I think of everyone here, and especially Jane and Oonagh.

 

[oonaghw]

Hi Lulu

Give up your life - to what end - is that what your mum would want and indeed what good would you be to her?

You can only be good when your good so you got to get whatever help you can when and where you can.

I think the earlier you can think of and do day care the better - your mum while shes goodish can get used to the routine and that believe me makes it easier in the long run. This illness is not something anyone of us can deal with alone - for any length of time. I've watched and listened to my siblings (of which there are 6) getting angry frustrated and mean with my mother - accusing her of 'acting up' where all the time my poor ma was incabable of those premeditated actions. The fact is they as we all give up a little of our lives and over time it takes its toll. Dignity is where its all at - we need to be able to always display love and care and we can only do that when we have a life.

My mum is slowly fading - I go home tomorrow to sit with my family and wait. Jane's dad has passed to what has to be a better life I pray the passing is easy.


Best wishes

Oonagh

 

[Lulu]

Oonagh, I'm thinking of you and your Mum ...
It's been a bad week, though I know it could be worse, and you have so much more to face than I. There's no alternative but to get through as best we can - Not so many doubts tonight. Our 'routine' has fallen apart this week as I have been out of action, as well as other family matters to see to. During this time, Mum has been 'abandoned', it just hasn't been possible to give her her usual level of attention, and perhaps we see a little clearer how little she functions, or not!

Still can't believe this is happening ...

Take care of yourself.

 

[daughter]

Hi Lulu,

It's been just over a year since you started posting on TP and told us about your Mum's diagnosis. You've been caring for for her since then and I'd say that there could be no one who would think you're "unable to cope" in the sense that you're not trying hard enough.

But sometimes we all need a little help and Day Centres - and any other help - for your Mum are a good way of getting just a little time to recharge your batteries and get back a little of that energy you need. It's not a selfish thing, it's a sensible and practical (if not ideal) solution to your being able to continue to care for your Mum as well as you have up to now.

You're right, this break from your usual caring routine may give you a clearer picture of what is needed/not needed.

Best wishes,

 

[allylee]

Hi Lulu, were at the day centre stage too, though mums refused point blank to go at the mo.
Weve been appointed a psychiatric support worker who comes round to take mum out for a walk, lunch etc, and after initially refusing that too, shes now formed quite a bond with the lady, whos fantastic.
Please dont feel guilty about asking for and accepting help, were not superhuman. Most of us are struggling to work, and care for our families, one has to find a balance for our long term health and sanity.
Ally xx

 

[Lulu]

Dear All. Thanks. No doubt I shall get used to all this in time -sometimes you just want to stop the world and get off for a while- but it's never-ending, isn't it?
A neighbour of Mum's has just callled as she has been concerned about her of late, says that she's changed, isn't attempting to socialise with her when she calls, just wants to be left with the TV. Am sure Day Care has to be the right move now, or else she'll just go downhill even faster. Have had to double her frozen meals order this last week too, as I haven't been cooking too much, which also serves to illustrate where she would be if I don't stay well. Just felt a bit depressed ....but am OK.
All you lovely people, take care.

 

[Sandy]

Dear Lulu,

I don't wish the SS, the AS or anyone else to think that I really have nothing very much to complain about, that it's too early to think of Day Centres etc. I don't want people to think I'm unable to cope when others do at this stage.

You have done so much for your mother already, you do not need to be filling your head with such self-critical statements. Outside help from places like SS should be called upon whenever there is a need, whether one lived with the person with AD or lived so far away as to be of no practical day-to-day help. The fact that you are concerned about providing a sustainable package of care for your mother is all that matters.

The changes that your mother's neighbour has noticed might be related to her medicine holiday from the Aricept, which I think you said her GP is going to restart her on? Have you noticed any changes since stopping medication?

You really are dealing with the most difficult challenges in supporting someone with AD to live as independently as possible in their own home. Getting that extra support, from something like a day centre, will enable you to carry that burden a bit longer, which has to be a good thing.

Take care,

Sandy

 

[Lulu]

Dear Sandy.

In theory, I am level-headed and coping with all that is being thrown at us, but then the slightest set-back and I'm suddenly drowning in it all again. You think it's all under control, then wham!, it isn't.

Mum has started back on the Aricept having had 2 weeks off. We noticed no change during this time whatsoever. The headaches continued throughout. Her memory is worsening all the time ....

Sorry to have moaned so much. I just can't believe this is happening sometimes...