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Fibromyalgia Action UK
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Don't know what to do !!!!!

My Father is in a Care Home in Grimsby with Alzheimers. He has been there there since 18th February where things had come to a head and he had gone wondering the previous evening and got himself lost, anyway he has been diagnosed just over 2 years. It is 180 mile round trip for me to visit Dad and is quite ardous as I have to go on my own too.

I have been looking into transferring my Dad to a Care Home near me, I haven't been able to visit him for 3 weeks now and feel so guilty about this , th e reason I haven't been is that I have low white blood cells which is making even more tired even with Fibro and M.E. if you can imagine that.

Well his Dr rang me this afternoon when I was asleep!!!

I did wake up and take the call, and he informed me that te Practice Nurse had visited Dad and that he had detiorated somewhat and they had decided to put him on Palliative Care and DNR with the Care Home. DNR is do not ressuciate.

After the call I cried and cried and could not go back to sleep so I have come on here for a rant or whatever. I am so tired I cannot think straight I really don't know what to do now.

I called the Care Home to be told Dad was singing and dancing on the Kareoke!!!!!!!!

There will be another Best of Interest meeting soon, so I guess things will develope from there.

Thankyou for listening.

Soft Hugs,

Sue x x x x x

24 Replies

Oh Sue, I am so sorry to hear this I know how hard it is for you to get over to see him and that makes you feel guilty.

You shouldnt feel guilty you have to look after yourself and you dont need to be in an accident when trying to visit him.

It is a very difficult situation you could move him quicker if you tell a care home about him being on pallative care and you are his only family but could he cope with a move?

I dont know what the answer is and I know this is such a worry for you and getting your head straight to give it some careful thought is so difficult when you are so tired

Is there nobody who would drive you to visit him??

Sorry I havent been much help

but I am here if you need to talk

thinking of you

big soft hugs xxx


Thankyou Penny, no there is no one who could drive me , my sister is in the States so that idea is out of the window and I guess that yes I am at the back of my mind worried that I might have an accident.

Soft Hugs

Sue x x x x


Hi i am so sorry to read of your situation but i just wonder if it would be worth contacting age concern for some advise.

I know they would have a lot of information as to your rights and your dads and even give you some support

hugs and best wishes poppy xx

1 like

Thanks for the advice Poppy. I will look into that. x x x x


oh honey

theres nothing i can add to the above comments other than - crikey you need a hug girl :-)

did you get it?

He is lucky to have such a caring daughter. Keep strong xx


Hi Westgate, thankyou for your caring Hug, I see my GP on Friday and she always gives me a hug as I am leaving the consultation I have a feeling I will be in floods of tears. x x x x


hugs and more hugs xx


Thankyou Rosehip x x x


hi i have just read your blog and realy feel for you. i know how you feel as first my mother-in-law was in a nurseing home after a stroke left her paralised on her right side and after she past my mum had to go into a car home. we had about the same round journey as you do and because of fibro we couldnt get to see them as often as we wanted and yes you do feel guilty. try not to get to down and getting it of your chest does help thats the great thin about this site.sorry havent been much help but agree with poppy age concern might come up with something. gentle hugs xx


Thankyou Scrumie x x x


Hi soulsusie,

I'm so sorry for you, i am in the same situation with my mum ;-(

she is in a nurseing home near brighton, and i live in london, i have FM aswell as a list of other illnes'es and in a wheelchair full stop. My brother comes to get me every few weeks and takes me to see mum and he brings me home again, i also feel very guilty that i dont get to see her as much as i like, mum also has alzimers. I no my mum has a social worker and has meetings where we myself my brother and sisters can be present, all about mums care and what we think is best for mum, what i'm trying to say is i'm sure she could help you get your dad closer to where you live so that you can visit as and when you feel up to it, being closer to where you live, or the other thing is contact age concern as sugested hun,

Big gentle hugs and loadsa love xxxxx


Thankyou somuch for your kind words, jay jay.

Gentle Hugs back toy you x x x


I am so sorry to hear of your situation my darling I know these are just words but they come with love I will pray for you tonight, on a more positive note I agree with Poppy and if that does not work try your local MP or have a talk with your doctor they will know help groups, or try your local FM group and see if someone would be willing to drive you, there is always a solution to every problem, keep your chin up and a massive hug from Northern Ireland


Oh you Darling Brian,

The words I know are filled with care and I really do appreciate them deeply, thankyou for your Prayers, and your massive hug was well recieved x x x

Soft Hugs to You x x x x x x x


No problem my love remember we are all here for each other


Yes thankyou again, Brian.

Gentle Hugs x x x


Hi Soulsusie,

I think age concern might be your best bet hunni. Hope you get it sorted soon. Not easy when you suffer from fibro. I dont know what else to add. Other than im thinking of you.

Sending you a massive hug & loadsa love hunni xxx


Hi Roxyroo thankyou for you kind words.

Soft Hugs x x x


Hi soulsusie , sending you a big hug too sweetie . if your dad was singing on the kareoke he sounds like he was enjoying himself . I used to be a psychiatric nurse in another life and nursed many folks with dementia and the cruellest thing even with the best interests at heart many relatives did was to move them around because of the confusion a new place brings , even finding the toilet was always such a struggle for them , one gent i nursed was convinced every time we tried to bathe him that we were throwing him in grimsby dock but once he was in it was the devils own to get him out . Sending you another hug bless you x


Thanks for those words x x x x


my heart goes out to you. I can't offer any advice but am sending you much needed hugs ((((((hugs))))) xxx


Thanks for the hugs x x x xx


God love you Suzie, I guess your illness has alienated you as it has done many of us, lifes hard.

I hope you can get it all sorted and it doesn't affect your pain and confusion levels too much, take care and gentle hugs Claire xxx


Thankyou Claire x x x x


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