Enough is enough

[ChristineR62]

I'm sitting here, just after half past midnight, with an alarm clock upstairs set to go off at 5am. My mother is refusing to go to bed.

We went upstairs at about 10:30pm, to get to bed, but she decided to have a shower instead, and the next thing is, she got dressed in day clothes again and came downstairs as if it were morning.

I've had enough now. I've had enough of the interrupted nights, the lack of sleep, all the stuff that's happened that I've posted about. I can't do this any more. I've already given up my social life for her, I can't give up my sanity as well. I've already had one recent near-miss on the way into work because I was in danger of falling asleep at the wheel - I may not be so lucky next time.

Sorry to witter on. It's either this or go out into the middle of the street and start screaming.

 

[jenniferpa]

Christine - this is what's so difficult as you've remarked before - it's not so much the major stuff (although no doubt that can break you) but the minor stuff repeated over and over and over.. Well you get the picture. I know how driven to distraction I was by my mother's non-stop wandering at night - couldn't stay awake long enough to do anything during the day, but come night time it was go, go, go (and no time at all to yourself, no point at which you could breath a sigh of relief and say "well that day's over".

Note your post, since in the future you may well think to yourself "well, I could cope a bit longer" and maybe you could, but at what price?

 

[Natashalou]

sounds like enough is certainly enough ...time to accept you have done allyou reasonably can. I assume you have reservations about care homes? I think almost eveyone does but sounds like its inevitable if you are to keep your health and sanity

 

[susiesue]

Hi Christine

I so sympathise with you - my husband is exactly the same.

It's all the 'little' things that feel as though they are going to drive you insane.

I think Natashalou is right and I too am now looking at homes - possibly just for respite to begin with, as I also feel I can no longer manage. Trouble is as soon as I get into that 'Home mode' I find that he is always sweetness and light the next day and then I feel really bad.......

Take care

 

[foxhound]

Just to say I've been roughly where you are, and the lack of sleep is enough to drive one to breaking point. ALL my sympathy.

Respite (at the least) may well be an option, but from my experience the quality of care in hospital was so bad that my stress levels actually rocketed as a result. Things may be better in yr area.

Have you explored changing meds, or trying a very structured end to the day - warm supper, no stimulating TV or music, early night... that sort of thing.

By way of encouragement, we are now past that stage and nights are slept through (almost all the time) (all fingers and toes crossed and wood touched that this continues!). Things are SO much easier to cope with as a result. Have hope and good luck.

 

[ChristineR62]

Susiesue, Natashalou and JeniferPA, thank you for reading and responding. I'm at work now, just got in. That's after I had to go into next door's front garden and pick up the rubbish that she denied having just thrown there.

I have a short list of homes to look at, the first of which I've already contacted by phone, and on paper, would be my first choice - I just need to have a look at it, and the deputy manager has told me to go whenever I want to, to have a look round (which I would have done anyway). If it is as good as it appears (and I know it's all relative - what's good to one person may only be adequate to another, and what I read may not be the absolute truth), I think she'll be better off there, no matter how much she might hate me.

I've reached the point where her hating me for putting her in a home is the lesser of the two evils, the second evil being the effect this is having on me now. If I have a breakdown, she'll have to go in anyway; if I lose my job through all this and therefore the house, she'll have to go in.

All I can say is thank God I got the POA forms all signed yesterday! She was fine when we did that with our neighbour - said some slightly odd things during the course of the afternoon, but was all sweetness and light, and very definite about the factthat she wanted me to take on that responsibility. Come bedtime - it was like someone lit the blue touchpaper!

I've only been around here a couple of weeks, but things have changed a lot in that time: from my point of view, I've found out a lot from here, and as far as my mother is concerned, I can see now how she has deteriorated in that time. And yes, you think you can handle it, you think to yourself, you got through that last episode and you survived, but it's not about surviving, is it? It's about doing what's best for them and for you.

 

[ChristineR62]

Just to say I've been roughly where you are, and the lack of sleep is enough to drive one to breaking point. ALL my sympathy.

Respite (at the least) may well be an option, but from my experience the quality of care in hospital was so bad that my stress levels actually rocketed as a result. Things may be better in yr area.

Have you explored changing meds, or trying a very structured end to the day - warm supper, no stimulating TV or music, early night... that sort of thing.

By way of encouragement, we are now past that stage and nights are slept through (almost all the time) (all fingers and toes crossed and wood touched that this continues!). Things are SO much easier to cope with as a result. Have hope and good luck.

Thanks, foxhound. The trouble is, I'm now so punch-drunk with everything that I can't get my head round the concept of trying other things to carry on with keeping her at home, in case they don't work and things just end up even worse than they are now.

 

[Helen33]

Hi Christine,

I am going to be working myself in a couple of minutes but I wanted to say that I hope that you get a break sorted. It is imperative that you stay safe and don't suffer the hazardous effects of sleep deprivation

Sending love and a hug xx

 

[Nebiroth]

It really does sound to me as though the moment has come for your mum to be in residential care.

Be prepared for pressure from Social Services to carry on though. They will no doubt suggest all sorts of "support". If you give the slightest hint that you are either able to cope, or may be able to cope given more support, they will ubdoubtedly start saying "well lets give it three months then". This is mor elikely to happen if you mum is not going to be self-funded.

You also need to work out what happens if your mum refuses. It will be very difficult to make her go into care if she is capable of expressing her wish not to.

 

[ChristineR62]

Thanks, Helen. I'm in the office now, but not really doing much. Being still relatively new and not fully trained in the job, I have relatively small tasks to do, and I think they are quietly supporting me by not asking me to take on more complicated tasks. Which makes me feel even more guilty!

Nebiroth, she's more than capable of expressing her wish not to go into a home! She doesn't realise she's not well, and she certainly doesn't accept that she has Alzheimer's - as far as she's concerned, everything's perfectly ok, even though, when I was just on the phone to her, she didn't know what a fridge was, and that was when she was standing right by it.

 

[Grannie G]

Christine, there is certain terminology which might prove effective when dealing with Social Services. One is `Best Interests` and the other `at risk`.
Bear them in mind.

 

[singersop]

Coping

Dear Christine, I cant believe that you are trying to cope with all of this. Im new to this site and have joined so I can be encouraged that there are other people out there who are suffering too, but your suffering is beyond duty. My father(86) was diagnosed a few months ago and its been rapid decline. I am one of 3 daughters who are not in a position to care for my father and we had to take the decision for him to go into a home to be looked after, otherwise god knows what would have happened, its very distressing at first but believe me people with this disease need to be in a place where they can get 24 hour care by trained carers,they are wandering around all night if they want to, the night staff let them do what they want, and when they want. I visit him every week for 2 days and thats bad enough, Im fed up with crying and feeling guilty, but dad thinks hes on a cruise ship and seems to have settled down now (a run of falls every week hitting his head meant that we were in A&E all the time) although he believes people are threatening him and torturing him and at first we thought we should believe him but its clear its his illness. Anyway all I wanted to say was that you MUST look after yourself otherwise you will end up loony too. Try and rid the guilt its a pointless emotion. Good luck Jane

 

[ChristineR62]

Thanks, Sylvia - I've just had a phone conversation with the duty social worker, during which I described what's been happening, and when the conversation turned to the occasion when Mum wandered off, the social worker used the phrase "at risk" without any prompting from me.

Because Mum is not self-funding, there are certain hoops we have to jump through first. However, the social worker will be contactingthe memory clinic for information, and it was the consultant there who asked for a care package to be put in place, but he also said that she would have to go into residential care sooner rather than later.

I was shaking while on the phone to the social worker, and my head's spinning now, through a combination of tiredness from not sleeping and tiredness from being worn down by it all. So I apologise for the lack of coherent thought in these latest messages.

 

[Grannie G]

It`s good you`ve spoken to a SW Christine.
I know the `shaking` feeling. It`s when all your emotions come to the surface and you are desperate to stay in control.
At least things are moving. If you feel you really can`t continue a day longer and things move too slowly, ask for emergency respite.

 

[ChristineR62]

Thanks, Jane. I did actually say to the social worker that the way things are, she was going to end up with two people on her books, the way things are going, and I'm quite sure, in these cah-strapped times, that's the last thing the council needs! I feel absolutely cornered - I love my mum, but I can't cope with this.

I'm not suicidal, but I can understand how people can get to that point when in this situation with nowhere to turn.

 

[mymumisjoan]

Christine, you are at the stage which my father reached earlier this year when he had to accept that my mother was beyond what any of us could effectively achieve in terms of home-based care. It is a horrible time for you both. But do not feel guilty at taking the path that you are taking, or feel that you are somehow betraying your mum. You are doing what is in both of your best interests. As I said in another post, no-one but those directly affected by this disease have any idea of just how debilitating it can be for carer-relatives. It is clear that you are at your wits end and you have no alternative. I hope that your mum is properly placed according to her needs and that you both are able to enjoy a better quality of life as a result.

 

[ChristineR62]

Christine, you are at the stage which my father reached earlier this year when he had to accept that my mother was beyond what any of us could effectively achieve in terms of home-based care. It is a horrible time for you both. But do not feel guilty at taking the path that you are taking, or feel that you are somehow betraying your mum. You are doing what is in both of your best interests. As I said in another post, no-one but those directly affected by this disease have any idea of just how debilitating it can be for carer-relatives. It is clear that you are at your wits end and you have no alternative. I hope that your mum is properly placed according to her needs and that you both are able to enjoy a better quality of life as a result.

Thank you. I feel so awful right now - she's sitting dozing a few feet away from me, you wouldn't think there was anything wrong. And yet earlier on tonight, I was subjected to a paranoid rant about people coming and taking or hiding her prosthetic breast (cancer in 2002), and when I tried to tell her that she's not well, she shouted that she was every bit as well as me. I have no idea where the prosthesis is - it could be anywhere, as she incessantly tidies things up, or rather, moves them around the house.

The stress of trying to be objective about all this is like a solid ball of pressure in the middle of my chest, and it never goes away. I cry too easily now, and when it gets really bad, I could scream. I had to speak to the duty social worker today and try to tell her what happened last week, but I couldn't remember half of it - she said it was stress.

Oh, and I found one of the landline handsets in the fridge when I came home tonight as well. Puts a whole new slant on cold-calling!

 

[nellbelles]

Oh, and I found one of the landline handsets in the fridge when I came home tonight as well. Puts a whole new slant on cold-calling!

Christine

Sometimes I realise that the fact Tom is blind, does lesson the number of places he puts 'things safe'

 

[Lynne]

Christine, there is only so much you can do before you risk becoming a basket-case yourself.
Don't beat yourself up about the inevitable course of events to come - many have travelled that road before you ...

.

 

[ChristineR62]

Sometimes I realise that the fact Tom is blind, does lesson the number of places he puts 'things safe'

My mother is always finding new and inventive places to put things.