UKC

Have you ever been a carer for someone?

How did you find it, was it difficult?

If so, how did you cope with the situations?

In reply to Blizzard:

I believe there is practical/emotional support available for carers, but I've no experience of being one.

In reply to Blizzard:
The carer may need a break - respite care for the person being cared for may help the carer cope.

http://www.nhs.uk/CarersDirect/yourself/timeoff/Pages/Accessingrespitecare....

In reply to Blizzard:

It was difficult, but everything going on around me made me feel as though there was no choice. Having said that, I would no doubt have chosen to do it anyway through love.

It's hard to explain what the difficulties were. Emotional ones watching someone you love struggle, lose an element of their dignity, their independence. Logistical ones, juggling multiple things that had to be done, trying to get out to buy milk and bread while managing visits from medical staff, relatives etc. Lack of self care, no time to eat, shower, brush teeth, just relentless duty because when someone can do virtually nothing for themselves the amount of care they require is of a scale you can't imagine. I think in two months I lost two stone. The NHS takes care of the patient but not the carer. I was juggling work at the same time for some time. The responsibility - I became the person who was forced into taking 100% of the decisions, collaboration no longer seemed possible with a deterioration in physical health leading to the patient's feeling of helplessness in not just physical ways. I was only a carer for 9 months. It was also surreally expensive, lots of home accessories, remote door opening, stools, chairs, shower seats, extra rails around the house, wheelchair hire. But I was only a carer for 9 months.

My mum, on the other hand, was a carer for 25 years. It became all she was, someone whose entire reason for being was the care of someone else. Even after dad died, she transferred that attention to her mum, then her neighbour then her friend, it became like she has no sense of self if she doesn't have someone to devote her support to. It was isolating for her over that period, friends slim down when visiting is the only possible contact, nothing really outside the home, and inside the home kind of awkward, particularly with interesting things involving catheters omnipresent. It's been really hard for her to try to rebuild any kind of social contacts after the event.

It's changed me to the extent I really couldn't do that for anything other than a life partner. If my mum ever needs care, I know too much about the mental and physical cost to do that in an open ended full time role. Fortunately I have siblings.

In reply to elsewhere:
Yes, and if you read that link you will see lots of words but little actual help.

My mother has been caring for my father who has alzheimers for 7 years. She is 82 years of age and it is taking its toll. She needs respite (how I am starting to hate that word) but, other than the few hours a week she gets to herself when crossroads come in, there is no real help. No co-ordination to speak of and frankly she's been abandoned on this issue.

Coincidentally I was on to social services this morning who really have no help to offer the carer. It's quite pathetic and I was trying not to get angry. As people say, if the carer can no longer cope, there will be a far larger burden on public resources but only lip service is paid to this.

In reply to Skyfall:
I agree.

I had tried to play the co-ordinating role of the super organised pushy patient's advocate shuttling between hospital, GP, pharmacy, district nurse, hospital social workers & council social workers.

The home care organised through adult social services fell apart and it took a crisis or two for my relative and the familly to accept that a care home was necessary.

On the bright side a carer I knew found the respite care was very good.

In reply to Blizzard:

on the risk of developing PTSD as a carer:

http://www.examiner.com/article/caregiver-wellness-posttraumatic-stress-dis...

In reply to Blizzard:

It's worth being aware that the carer is entitled to an assessment of their own needs
http://www.nhs.uk/CarersDirect/guide/assessments/Pages/Carersassessments.as...

It's not always mentioned, as it can end up costing social services more....

Local Carers Associations may also be able to provide some support, though exactly what will vary from area to area. There's a directory of local organisations (and a lot of useful information) on the national website
http://www.carersuk.org/

In reply to Blizzard:

I haven't, but I take my hat off to anyone who does it.

In reply to Skyfall:

A sad situation. I feel for her, and you. My mate is a doctor and I remember him telling me that he kept someone in a similar situation to your dad in hospital for a few days longer than strictly necessary to give their partner a few days off.

In reply to Blizzard: Hi i did this for just 11 months and as the above mentioned it is very hard when you first start,you feel cut off from freinds,i didnt go out much and became very irritable with everyone,i found myself snapping at people for next to nothing,so eventually made my brothers and sisters help because at first they were happy for me to do everything.

In reply to genericflipper:


Happened to me.