help needed - do carers of people with dementia suffer?

[rachelhr]

I am a third year medical student currently studying dementia.
As part of my studies I am doing a presentation on whether the carers of people with dementia suffer.

It would be very useful for me to hear from anyone who feels they may be able to contribute to this by sharing your stories and feelings. The information will be used to describe to other medical students what it feels like to care for someone with dementia.

Thank you for your time

Rachel

 

[christine_batch]

Dear Rachel,
First, in answer to your question yes Carers do suffer.
It is a very hard one for any of us to relive what we are going through.
Perhaps if you contact Alzheimer's Head Office would be a more appropriate place to start.
Please do not be ofended, but imagine someone you loved had AD or any form of dementia. How would you feel?
Christine

 

[rachelhr]

Thanks for your reply Christine - the question was meant in the rhetorical sense to find out what it is like to care for people with dementia - not to question whether they suffer at all.
I imagine that it must be very difficult, but do not want to presume anything.

I was planning to speak to HQ but wondered if any forum users wanted to share their experiences for the benefit of future healthcare professionals who will want to treat relatives and carers with compassion and respect. I was hoping to gain some insight which might help me with my future practice.

Rachel

 

[Natashalou]

Well.
Firstly, how are you defining a carer..or are we to self classify? I ask this as there are so many fine people on TP who are carers in the sense I could never be in that they care for the sufferer more or less 24/7..whether this person is a partner, parent or other.
I myself am not a carer in this sense as my mother resides in a NH..but yes, I care ABOUT her rather than necessarily FOR her.
Do I suffer?
The main thing I suffer..mainly because she DOESNT live with me is endless guilt..she is desperatly unhappy where she is and desperatly wants me to find an alternative..ideally living with me!
Then I feel a second load of guilt because I give so little in compared to others..and although there are many good practical reasons why she cant live with me..there is also the inescapable knowledge I actually dont WANT this awkward and unpleasant old person whose smells horrid and has nasty habits disrupting my life..and then I feel guilt that I have this view of her..after all , all she actually did was get old!!
I feel guilty when I dont visit and nasty and mean when I do because I cant wait to get away..because she is abusing and berating me.
I feel inadequate as im not strong enough to push her wheelchair. I feel hopeless that I cant find somewhere better and safer for her where she will be happy. I worry all the time about the very slight possibility that one day one of her wild stories about being punched by the home staff or being sexually harrassed by staff she has decided are lesbians might actually be true.
I have nightmares often about her situation until I now prefer never to sleep .
I worry contantly whats going to happen when her money runs out, the last cheque is written and she has to move to somewhere else maybe share a room or worse.
I cry at the way her life is reduced to one room and her main pleasure is being mean to me and /or stuffing hadfuls of dolly mixtures.
I want to hug her frail body and try to wring a bit of love out of it and I also want to wring her neck and bring the nightmare to an end.
Thats my personal hell...God only knows what others suffer

 

[CraigC]

Hi Rachel,

I have moved your post to the Researchers, students and professionals section. No harm done, but please read the following link which outlines guidelines on gathering research via the forum:

http://www.alzheimers.org.uk/talkingpoint/site/scripts/documents_info.php?categoryID=2&documentID=63

Natashalou and Christine, apologies for any confusion, I forgot to leave a redirect and can't work out how to undo

Kind Regards
Craig

 

[christine_batch]

Hi Craig,
That fine. I do have a couple of IT Consultant in my family who go over any faults over the telephone. You can borrow one if you like but please return by special delivery.
Best wishes
Christine

 

[Emma Svanberg]

Hi Rachel

There is a lot of literature out there on the impact on relatives, and a couple of literature reviews, if you try a database like Medline.
Emma

 

[Helen33]

Dear Rachel

I think you need to do the work by reading the threads on here rather than getting us to do more work by reiterating what we have already said on the threads.

I wish you well in your project.