Help I'm feeling selfish

[nellbelles]

Hi my friends

Well I took Tom to see the district nurse (fantastic, the ulcer his hip appears to be healed, that has taken me over 12 months to sort)

Anyway I asked for an OT assessment for ME; she looked at Tom and I said Oh yes Tom as well.

NOW I know what will happen (been there, got the t shirt, burnt the video) I become invisible

Yes I am aware of all Tom's problems, but over 20years I have always sorted them as best I can, I don't need an OT to suggest any changes in how Tom manages (maybe, later but not, now. New ideas are forbidden.) Look what happened when I moved the fridge last May, he has only found it twice. He can put the kettle on, that's it.

But I do need the OT to sort me at least a perching stool or we will only be eating cold food I can prepare sitting at the table. Oh and they are not removing the Bath While I can manage to step in the bath and use the overhead shower we are fine, Tom can (with prompting manage a bath, but he needs to sit and feel safe) Some grab rails at he doors would good (for us both)

Took his daughter shopping, told her he was refusing respite while I'm in hospital. She said what a shame I couldn't just take him and drop him at the home I take that as a no for any help from her

Oh but the next night she phoned and asked if I would take her to a garden centre to get some plants for her Mum's grave, as they were cheaper there (have I got gullible tattooed on my forehead.) She has three daughters all with cars, two I've not seen for 18months (not here, at a wedding) and one who thought I would not go into hospital and leave Tom at home alone, she lives 5min on foot away, and yes I'm always available to keep an eye on the boys when they are away, and take run over boy with broken bones to the hospital)

Told you I am being a selfish bi##h.

Am going to be made radioactive on Monday (with associated scans,) then on the 24th I will know what they intend to do and can get SS involved with care for Tom

Thanks for reading, any ideas welcome

 

[lin1]

Hello Helen
I agree with new idea's forbidden,stick with what works

I don't think your being at all selfish.
maybe you could get them 2 provide a walk in bath with overhead shower, then again maybe not,as he may open the door when bath is full

You take carexxx

 

[Helen33]

Morning Helen,

I found hints and tips with Alan's family didn't work and so I had to learn to ask for what I wanted outright!! As I don't usually ask for anything it was very difficult at first but I learnt. Throughout the illnes I needed very little from them but then when I did need them, I asked them outright and they mostly agreed. It seems your 'hints' and 'tips' aren't working either

Anyway I asked for an OT assessment for ME; she looked at Tom and I said Oh yes Tom as well.

Did you say anything to her at this point? You seem like someone who can say it as it is and next time someone comes you could say you remember past experiences where your needs are overlooked and that it is vital that your needs are paramount as having your needs met is what enables Tom to be where he is

I wish I could be more helpful.

Love

 

[lizzie53]

On feeling selfish....

Hi,

I've been a fulltime carer for three months. The idea of doing this for 20 years is unthinkable for me. Congratulations on surviving, and still having a sense of humour. My main frustration is having had to organise my life with mother-in-law the centre of everything, and yet she is totally unaware of this... and I still feel guilty if I do anything without her. On Saturday I'm going out for a meal with my husband for the first time since Jenny (M-in-L) moved in with us. It feels very naughty of us (even though the table's booked for 6.30pm so we'll be home before 9) and even though we've been married 16 years and are both well over 50. Living with mother certainly manages to stir up all sorts of feelings.

One positive thing from you posting is that it helps ME feel better - not so isolated, not the only one feeling guilty and frustrated, and maybe not so hard done by after all.

Very best wishes, and I look forward to hearing/learning more.

Lizzie

 

[Linda Mc]

Quote
One positive thing from you posting is that it helps ME feel better - not so isolated, not the only one feeling guilty and frustrated, and maybe not so hard done by after all.
Yesterday I posted about being tired of everything and I totally agree with Lizzie's thoughts.

Hope you get things sorted with the OT and the family!

 

[Grannie G]

Dear Helen

Definitely not selfish. Taken for granted, yes. But selfish, no.

And this is where life as a carer takes it out of you. You are so involved getting support for the one you are caring for you have no strength left for yourself, to get help to meet your own needs.

I know two wrongs don`t make a right Helen but please don`t be so ready to help the family when they are not showing you any consideration in return. In this respect perhaps it would do no harm if you were selfish.

Love xx

 

[christine_batch]

Selfish and Guilt

After being a Carer for 6 years to my late husband (and I am disabled) and respite, trip, ME time a Carer sould not feel guilty.

I went through that for 6 years and none of us applied for the job, we did it out of love.

Looking back over all my diaries, I realised that my live had been put on hold and now I am trying to find ME since Peter passed away.

In my personnel opinion Selfish and guilt feelings I know it is hard but throw those feeling away.

To all of you still caring, I send my love and respect, to those of us going those the grief, may we be granted the strength to get us through the coming days.

Christine
Wife & Former Carer

 

[connie]

Am going to be made radioactive on Monday (with associated scans,) then on the 24th I will know what they intend to do and can get SS involved with care for Tom

Helen, I know just how well you care for Tom, so for now I will concentrate on you. I shall be thinking of you over the next couple of weeks. Stay strong.

 

[Nels]

Hi nellbelles, not sure how it works in Leicester but hubby works for Newham (community equipment) and people can self refer you do not have to wait for doc or someone else to refer you - try it. Ring Social Services and ask for OT dept - Newham actually have technicians who have some OT training and can sort out things like perching stools etc without people having to wait for a full OT assessment. Grab rails can be installed depending on the wall itself and may need a full OT assessment. Do try the self referrral system.

Nels

 

[DeborahBlythe]

Morning Helen,

I found hints and tips with Alan's family didn't work and so I had to learn to ask for what I wanted outright!! As I don't usually ask for anything it was very difficult at first but I learnt. Throughout the illnes I needed very little from them but then when I did need them, I asked them outright and they mostly agreed. It seems your 'hints' and 'tips' aren't working either

Dear Helen, (Nellbelles) I was going to say something similar but see that Helen33 has phrased it all perfectly. I think you have to be direct with people. (I am not very good at doing this myself and I understand why anyone might find it difficult).

However if you can summon the strength to ask plainly for help, then at least you will have given your family a clear request rather than an ambivalent one. They can say no, it's true but at least you will be sure that they understood you.

I also agree that you should be cooler when the requests for help from you come your way, but again, I think it might be helpful to say why, rather than leave uncertainty in the air. I know this sounds like a 'high risk' strategy, but you are the one who needs support now, and if people can't find it in their make-up to empathise with your problems, I don't think they should have the comfort of your co-operation around theirs.

With the best will in the world, I do not even think that putting flowers on a grave is as important as supporting you and Tom with your very difficult life challenges, let alone the so-called 'imperative' of finding cheap flowers.
Just my personal opinion.
Take care .
xx

 

[nellbelles]

Lin1

I agree with new idea's forbidden,stick with what works

Thanks am going with that

 

[nellbelles]

Helen

I was quite surprised,I have never asked for anything for ME, and I found it very difficult as everything has always revolved around Tom (I was lying in a hospital bed, but Tom got the attention )

I WILL IMPROVE, ON A LEARNING CURVE

 

[nellbelles]

Linda and Lizzie

Glad I made you two feel better
Nothing better than a moan on TP to find the people to support you

 

[nellbelles]

Sylvia

I know two wrongs don`t make a right Helen but please don`t be so ready to help the family when they are not showing you any consideration in return. In this respect perhaps it would do no harm if you were selfish.

Well so it didn't simmer I told Tom to phone her and tell her I would take her tomorrow around 12 Oh thank you, but I'm going out with my daughter

Anyway later he phoned her agian to ask the same thing because he had forgotten, forgive me I should have stopped him, but why shouldn't she have the rough stuff too.

 

[nellbelles]

Christine

Looking back over all my diaries, I realised that my live had been put on hold and now I am trying to find ME since Peter passed away.

I hope that you can soon find a way to move your life forward.

 

[nellbelles]

Connie

Helen, I know just how well you care for Tom,

Thanks for your confidence

I might take his daughter out on Monday while I'm still radioactive

 

[Grannie G]

I might take his daughter out on Monday while I'm still radioactive
__________________

Helen.

 

[nellbelles]

Nels

Do try the self referral system.

Thanks for that, but the district nurse has referred us, I have no problem with her she has been helpful with aids for Tom

 

[nellbelles]

Deborah

I do not even think that putting flowers on a grave is as important as supporting you and Tom

Without sounding to bitchy, I feel that flowers on her Mum's grave really isn't high on my agenda of things to worry about, as I never get to put flowers on my Mum's grave, 'tough' is the phrase that comes to mind.

 

[nellbelles]

Update on today

Today we went to see Tom's psychiatrist. Tom wanted to see him in January but he was on sick leave.

I'm wondering if this is coming under the heading of sun-downing.

Early evening Tom has been going into the toilet and muttering, talking, using 'choice' language, and then we have had a tirade of 'I wish I was dead'. 'I would be better in a box' Also constantly asking me is he any trouble? or hard to look after, so I suspect he frightened that what would happen without me.

Anyway I gave the Doc a note about his agitation and depression, I have a note back from the Doc that Tom denied it all, but the Doc has suggested that I phone him when I can.

So I will try to do that as soon as I can.