Bad Day Sorry

[cris]

I think I am going to flip. I'm crying, I feel bad I just had a go at Susan for following me everywhere, standing behind me ALL the time, when I'm shaving, looking at me, not saying anything, Follows me humbly in the garden, upstairs, everywhere. I can cope with doing everything, but just having her stare at me - even when we watch tv, she watches me.
I have had this for several weeks now. I received a letter in the post that has pi**** me off and made me angry, and I flipped - told her to go away, go and watch telly GO AWAY. It's giving me headache. (It's 'cos of the letter - I have never said anything to her before - it incensed me the letter.)
Susan is having a bad time. Told me she just wants to be with me, wishes she was "not here", hates being like "this". I can not understand why she cannot feed herself, dress, or clean her teeth or knows where the rooms are in the house but she knows what is happening to herself. I have found that giving her drinks using straws helps her and stops spillage. (tea, coffee, juice) I told the respite helper on Tuesday and she agreed when they went for a coffee. So now it's a straw all the time. But I feel awful. Just awful. Not signing on anymore today bye

 

[Grannie G]

Oh dear Cris, You are going to need to get more support.

This following/shadowing is wearing you down and all the love in the world can`t help you cope with it.

Whatever the contents of the letter it seems to be the final straw and you are stretched to the limit.

If you continue like this, there will come a time, [it may even be here] when you will be unfit to continue caring for Sue. Please get more help now. See if she could go to day care. There must be somewhere for her to go to give you a break.

Please phone emergency SS and ask for help.

Love xx

 

[Skye]

Dear Cris

I'm sorry you're having such a bad day. You sound as if you are at the end of your tether, and the letter was the last straw.

Don't blame yourself, we all flip from time to time when things get too much for us. We're all human, and 24/7 caring is very stressful.

Perhaps you should request a new assessment, and see if there is any help available which would be acceptable to Sue?

You have to consider your own health, and if you become too stressed you won't be able to carry on caring.

Don't worry about snapping, Sue won't remember. Just see it as a warning to yourself, and try to get some help.

I've every sympathy for you, I know how difficult it is.

Love,

 

[Kate P]

Cris,

I'm so sorry you're having such a bad day.

Please don't feel bad for getting annoyed - you're not alone in this. My dad has the same problem - mum follows him around all day and he also gets very frustrated with this and sometimes that does come out in anger.

I don't know if it's possible for you but we have found that we can stop mum following dad if either myself or my sister are there or we take can take her out for a little while before she gets aggitated and demands to go back to dad. It does give him a little break though.

Is there anyone who can do this for you - I think dad finds that even an hours peace playing on his computer/guitar etc can make all the difference.

Thinking of you.

Kate P
XXX

 

[Canadian Joanne]

Dear Cris,
Of course you feel badly but that's because you're a decent person. I agree with the others, I think you need some respite time. Is it possible for Susan to go a daycare centre one or two days or mornings or afternoons? I think you really need a regular break, it would help you get over the humps knowing that there's a bit of a break coming.

As for her awareness of what is happening to her and yet she's not able to do what we think of as ordinary, easy, basic things (teeth cleaning, dressing), it's simply the course of her disease. Everyone is affected differently. My mother knew there was something wrong with her but she thought she was losing her mind. Yet she couldn't remember that she had been to the toilet 10 minutes ago and would insist on going again. Then she'd complain "Nothing's coming out". It would frustrate me enormously.

You are caring for Susan 24/7, which is an enormous undertaking and responsbility. You need to make arrangements for you to have time for yourself so you can mentally regroup and refresh.

Take care.
Joanne

 

[cris]

Sylvia. I do not know emergency SS. I think I do not want to know them.
Hazel. Susan has NEVER been assessed by anyone to my knowledge. Respite help I think are linked to SS maybe they "report in". The only other is the consultant at the hospital and our gp.
I went to her and cuddled her after 10minutes and she had forgotten it all. But she has been very weepy all day. Still did not leave me. Sat with me while I pick music for the album posting TP. Still flipped at me when it was time for toilet and cleaning teeth. Bath was ok, though she does not "help". I know I'm not depressed, my gp (2 weeks ago) told me I was just tired. That cheered me up knowing I was not depressed.
thanks for your replies
cris

 

[Skye]

Cris, you sound so much better. No-one wants you to do anything you don't want to do. We were just worried about you.

Sylvia and I know where you are coming from, we both care for spouses at home, and we know that sometimes things get on top of us.

That's the blessing of TP, you can let off steam and people understand.

Best wishes to you and Susan,

 

[cris]

Skye: I sound better !! Well there are those worse off than me. Off to mums to do her shopping, maybe a little cleaning for her.
Sylvia:SS i will (try !) to use / contact when there is no alternative, but again they are under pressure and i always feel that there may be others out there that need them more than i do. - ie some of these young children that care for their parent or help brother / sister.
thanks each for replying
cris

 

[ROSEANN]

Dear Cris
I think you need to think about yourself and your problems not what is going on with others, it`s obviouis you are at the end of your tether and so you need some help.
Like your Susan my husband followed me around but is not to bad now but I do know how you feel. My local surport group has got him a place at a day care centre one day a week and it`s a god send.
As to the SS you need to get in touch to ask them to assess you both, even if you feel you do not need them now it takes along time to set things in motion and it`s better to do it now so that things can be started and you have that emergency number. They may be under pressure but so are you.
Hope it all go`s well for you
Roseann

 

[cris]

Thanks Roseann. It is not really Susan that brings on the end of my tether, but what happens around me. I know I would love
more breaks, as many of the things I used to do - I cannot do. ie have a cycle, go for a good walk. They were only half hour / 1 hour.
Even a good read is always interrupted. Never mind that's life and there are worse of so we get on with it. Thanks for your concern (and every one
else's). I not sure if Susan would be happy at a day care centre. I will wait to see if the respite helper mentions it. Been to my mums this morning to help her, but they are never grateful are they. Always something wrong, or do this do that. Sad thing is the one and only time she said sorry to me was when she told me she was "sorry she ever had me." It was 26 years ago. Hope I don't sound like I hold a grudge. Don't suppose she meant it but it sticks. Never mind we all say things at times I guess.
cris

 

[Nell]

i always feel that there may be others out there that need them more than i do. - ie some of these young children that care for their parent or help brother / sister.
thanks each for replying
cris

Dear Cris,

There speaks the truly nice person! I'm not being patronising - I really mean it!! Really nice and good people like yourself are always more concerned with others than with their own needs.

May I just remind you though, that by addressing your own needs you are also taking care of Susan's needs? She really needs you, and if you are worn out and have no reserves of strength or energy to call on, you will be unable to continue to meet those needs. This may sound "doom and gloom", but it does happen that way.

When I worked with seriously ill children, some parents spent night and day by their child's bedside without a break. This inevitably resulted in the parent breaking down at some point and being unable to keep going.

So DO please take of yourself too.

 

[cris]

Thanks for your concern Nell. I will take heed. I see that you are in Australia.
Some of our best holidays were in Australia. Won't go into it. You'll get bored.
Just love the country and people and Ozzie humour.
cris

 

[christine_batch]

Bad Days

Dear cris, 4 years ago at the ago of 58 my husband Peter was diagnoised with Alzheimers. I have been disabled with rheumatoid arthritas for 21 years and have 4 children from my previous marriage and 6 grandchildren. I have experienced all that you are describing. Many times I wanted to get in my car and just drive anywhere. Even book into the hotel round the corner for one day. I never did do that because when I look into Peter's eyes I see the love there although he is in a Care Home that same look is there. So after finding a soulmate and brilliant to his step children and a very hand on grandad, no one unless they go through the wicked illness understands. You have my full sympathy and admiration.. By following you every where, they are frightened what they are experiencing and we become the person they know is there all the time. I could never go to the toilet without Peter following. Now he is in a Care Home, all children off hand the house is so empty and home is no longer "home". Thank God I have grandchildren. This weekend I have a 7 & 11 years old sleeping over. I am getting everything ready and they and I are excited but when I laugh and relax I fill guilty big time. I should have put Peter in a Home a year ago and told the Consultant and Doctors' I will not give up but unfortunately in January I was told if I did not let Peter go he would outlive me. So I had to think of my children and grandchildren. We are here for you at any time. God Bless. Christine

 

[cris]

thank you Christine, thanks to all for words of support. I know why Susan follows, and I know when on a good day she knows what is happening, it is very upsetting and distressing. Whatever happens in the future we did our best together.
cris

ps Christine - have a lovely weekend with the grandchildren

 

[Amy]

Hiya Cris,
Doing your best - that is all you can hang on to - when mum died a month ago it was one thing that gave dad great comfort - the fact that he knew that he had done all that he could. Didnt make him perfect, didnt stop him snapping back at her some days, feeling shattered, being saddened at losing the future they had planned - all those negative thoughts and feelings carers get- but he knew that he had done his best.

Love helen

 

[Skye]

Chris, can I join you? This is unbearable.

 

[cris]

Helen you hit the nail-on-the-head.

Of course you can join me Hazel, I'll put the kettle on scone and jam

cris