Anyone else?

[claret35]

feel really really awful after they have been asked by professionals how things are going, offload, telling them all the things I notice not going well and then being crippled with guilt and questioning yourself if your wrong and things haven't deteriorated?

I can't keep a track on her medication because she refuses to let me help, I've even bought the medibox things days/times/etc! Any suggestions?

I go out when Mums social worker calls and surprisingly she remembered when I came home that the social worker had been to see her. Started shouting at me for telling him to call which I didn't she couldn't remember when he was supposed to be calling and asked me to check.

Time to get back in the garden and kill a few weeds I suppose.

Claret35

 

[christine_batch]

Dear Claret,
Just a suggestion but can you call thhe Social Worker and explain about the medication and perhaps the S.W. can check her/himself about the medication.

I know it is hard have been there myself but please try not to feel guilty. We can only say it as we see it.

Can you keep a daily diary ? Due to stress with this illness, yes we do question what we experience, then doubt steps in but to the Professionals it makes sense.

With best wishes
Christine

 

[gigi]

questioning yourself if your wrong and things haven't deteriorated?

Hello Claret,

I can certainly empathise with you on the above!!

I reason that because the decline is something I live with on a daily basis I don't really notice it unless I look back..some days I think Eric is perfectly normal..and have to remind myself he's not..I'm just accepting how he is.

And I certainly feel guilty when I gain reassurance from others who tell me they see a difference in my husband. It's an awful situation to be in.
Can't help with the tablets, though. Eric has a Dosette box but if I don't help him with it he either forgets, mixes them up..or they all end up on the floor!

Goog luck with the weeds..mine are taking over again!!

love Gigi xx

 

[TinaT]

I too can empathise with what you have said. When I told the professionals about my problems with my husband and they then stepped in to help, I felt guilty and that I had betrayed his trust in me.

It is only when you think back to how life was a few years ago, that you actually realise what an insidious, degenerative disease we are dealing with and that what we are doing is for the good of our loved one.


xxTinaT

 

[Tender Face]

Oh Claret .... my sympathies .... with mum's CPN review tomorrow I know she will 'raise her game', smile sweetly and say 'we' are coping ..... and as soon as I am asked to answer questions on my own to one of the team while the other does the MMSE and stuff with mum - the floodgates will open and I will tell them exactly how things REALLY are ....... Betrayal? Not in my book ........ someone has to tell them the truth ...... for both our sakes - and quite frankly - it's nice to be able to offload isn't it? We all need to at times - and if it's to the professionals - well if they don't understand then they are not professional???????

On medication ...... I organise repeat prescriptions for mum - and apart from that can only 'spot-check' - I simply can't be there every morning when she is due her tablets ..... I keep a note of how many tablets she has been prescribed ..... how many days since .... do we still have the right amount left in the packet? (Like stock-taking I guess) .... what I can't do is physically watch that she is taking them and not flushing them down the loo ...... so the stock-taking is a bit of a cursory exercise .......and no I don't obsess myself with it every day .......There have been times she has struck out independently and tried to reorder her own meds (when I have already done it) - but of course surgeries these days will not allow for over-prescription (in mum's case NOT taking meds is less a concern than if she were able to overdose on any) ...

Well done you on finding a very productive form of 'self therapy' .... killing weeds is a far more beneficial activity than my usual tack of punching cushions!!!!!!!

Love, Karen, x

 

[Carolynlott]

Hi Claret,
Yes, yes, yes to the feelings of guilt. Even worse when loved one goes into a care home - it's heartbreaking leaving them there knowing all they want in the world is to be home in their own chair watching their own TV, sleeping in their own bed. The mind plays tricks - "he's not that bad, he's not as bad as some of the others in here - maybe this is a bad idea, maybe I should take him home again". That's why it's so important to keep a diary to remind you of how it was and why you have to do the things you have to do. Been there with my Dad, just starting the process again with Mum.
C

 

[Margarita]

feel really really awful after they have been asked by professionals how things are going, offload, telling them all the things I notice not going well and then being crippled with guilt and questioning yourself if your wrong and things haven't deteriorated?

crippled with guilt and questioning yourself if your wrong and things haven't deteriorated?

I use to feel like that , she not deteriorated how could I have said all that to SW then feel so guilty.

I really wonder why now , if I think about it . I would say it was because mum had those Elusive Moment of Clarity that seem to last more then a moment

so I would think she not that bad why have I said all that to them SW , then in a blink of an eye she be having a irrational argument with me .

I can even now fall in to that gap of having an irrational argument with her , because I still find it hard to shut up , when she got it all wrong & blaming me . but now I tend to laugh at myself for doing it, for me laughing at myself is a way of releasing my tension & thank god it seem to help with cramming mum down, So I end up giving her a hug , not because I feel guilty , I just found it seem to help to de - fuse the anger in her for getting it all wrong .

 

[Roma]

Like everyone else I can certainly understand what you're going through. I have days when I think things aren't too bad, and then my mum's neighbour rings me to say that she's had my mum along at 2.00 in the afternoon in her nightie looking for her tablets (the carer comes in twice a day to give her the tablets), and also the daily logs from the carers are now noting that mum is getting more and more confused.

I know it's only a matter of time before I have to consider full time care for her but I'm just so desperate not to make the wrong decision and put her into a home before she needs to be in one, but I know that her safety and wellbeing is the most important thing.

She has her appointment with the Memory Management Nurse in a couple of weeks time which she hates as she gets quite distressed at being asked all the questions from the test and ends up getting aggressive with me and the Nurse and then refusing to answer all the questions.

I just think that the feelings of guilt is part and parcel of caring for someone who can't rationalise why things are being taken out of their hands when it comes to deciding the best things for them, especially when they think that they are coping well and don't understand the impact of the illness.

Carolyn is your dad in a care home now and what made you decide that the time was right, although from reading your e-mail you still have doubts from time to time, and how awful that you're having to go through the same thing with your mum.

 

[Carolynlott]

Dear Claret,
Yes, Dad went into a care home in December. Mum was his carer, and because it was becoming obvious that she had AD too, it was like a pair of 5-year olds living on their own and it just wasn't safe. They wouldn't accept any outside help that Dad's social worker offered. I knew they were edging towards a cliff and it was just a question of when they would fall over the edge. Mum started to say less and less to me about how bad it was living with Dad, though she would tell her sister, who would then say to me "she doesn't tell you the half of it".

I think it's all a question of safety. Dad was going out and getting lost and falling, and also going out in the dark. I would say to Mum "you shouldn't let him go out alone" and she would always say "I know". But in the end it was Mum who said she couldn't take any more - it wll blew up in a crisis one day.

Now Mum is on her own, like you I wonder when the time will come when she is no longer safe. I know it is going to be horrible because she won't want any outside help either.

Claret, I have sent you a pm because we live in the same part of the world.

Best wishes,
C