Caring is bloody hard.
Caring means, more or less, putting your life on hold for the comfort, safety and health of another. Caring means sometimes neglecting yourself so someone else might feel a bit better.
No one tells you this before you take on the role. A lot of people think that they do care - never taking time to just talk to someone who may be a bit lonely stuck in a bed or a chair or a house. Let alone thinking "yes, the person I care for needs something and they should be seen to first".
Mum has Parkinsons. She has the tremors, Her legs gradually refused to support her as she moved about and, over the years, she went from using a walking stick, to a wheeled walker to a wheelchair. Our house was not designed for ease of wheelchair access and we don't have a large downstairs bathroom and bedroom. (Caring can require a lot of space because of equipment.) Adapting our house would have cost more than we could have afforded.
Fortunately,at the time, Social Work had a relatively decent budget and I knew the words to use.
That's something else, knowing the words. Begging at the door of Social Work or a charity or whatever trying to get what you need to support the person you care for is not easy. If you don't know the language you'll get nothing, or not enough. Or dealing with the health care system.
So we managed to get a stair lift installed. That was an absolute saviour once she developed Postural Hypo tension (blood pressure dropping suddenly if you are upright or sitting up), because it meant I could get her upstairs and lying down in bed without having to drag her upstairs. We managed to get various small adaptations to the house - grab rails & such.
Before my sister developed spine problems, she and I would, on a semi-regular basis, have to get Mum (who had collapsed on the floor) onto a bath sheet, drag her along the landing into the bedroom and then hoist her onto the bed. If she passed out sitting on the stair lift I could usually just grab her under the arms and drag her along to the bedroom.
I lost count of the number of times I would wake at 3 in the morning to hear her getting out of bed and trying to make it to the stairs to go down to watch TV without disturbing the house. I'd see her safely downstairs, get her settled, get her a drink, organise the TV and then go back to bed (because I was working full time) and sleep with half an ear open to her moving around & falling. I lost count of the number of times I had to get her off the floor.
Unfortunately, all this took its toll. My muscles in my shoulders, back and upper chest started to rip. The muscles in my back started to spasm.
By this point, mum needed constant supervision, but dad was around and he was relatively capable of keeping her upright - if she fell, that was a call to me. She needed help showering, dressing, toileting (though she wasn't incontinent yet).
10 years after Mum was first diagnosed with Parkinsons, I became ill myself. 3 years after that we had to call Social Work and have her and us assessed. Fortunately, Scotland has Free Personal Care for the Elderly, so there was no charge for the 4 visits a day by 2 workers. Still, if she fell, there was only me, and sometimes my sister, to get her off the floor.
I became very frustrated with the NHS, who have this assumption that, if a person is fit to be discharged, then they will not provide help in getting someone home. Let me tell you what getting someone unable to walk independently home means for us.
Wheelchair from ward to car. Lift Mum from wheelchair into car. Fold up wheelchair into the boot. Drive home. Get wheelchair out boot, lift Mum from car into wheelchair. Wheel into house (fortunately we had a stair climbing wheelchair). Lift Mum from wheelchair to stair-lift chair. Skedaddle up the stairs ahead of said stair lift chair. At top of stairs lift her out of stair lift chair and onto the wheeled walker, wheel into bedroom. Undress from day clothes, dress in bedclothes, lift from wheeled walker and settle on bed.
No help from NHS or anyone else. I really feel for the people who do not have someone who can do these things.
Then, one day, the ancient and creaking stair lift gave up the ghost.
Now? Now I juggle looking after the house, as I am physically able to do, chase medical issues, put up with Social Work reviews, care reviews, District Nurses trying to tell me that what I am doing is wrong and "how dare the door not be open when they want to visit", balancing the needs of a doubly incontinent person with provision of all sorts of things like baby wipes, various creams and salves. Having to negotiate the cumbersome system of getting to talk to a GP. And praying that nothing goes awry when the preferred GP is unavailable.
Then there's the emotional issue. Looking after a parent requires a detachment and a redefining of the roles. Mum has various personalities now, she isn't "just" my Mum any more she's also a wilful and manipulative child who can say some dreadfully hurtful things, she forgets day to day, hour to hour her situation and I have found her trying to get out of bed.
What's funny is siblings come to visit, Mum makes an effort, seems to have a grand conversation and said siblings come downstairs to announce that "she's fine, you're obviously exaggerating her condition" is quite bemusing. It used to be hurtful but now I just don't have enough energy to care that much. What's laughable is I go upstairs, after they've gone, and Mum looks at me and says "who were those people?" She had not recognised her eldest son, daughter-in-law nor their grown-up children.
I could scream at her, get angry at her for getting old and ill but why? It's life, it happens, in some ways I am lucky still to have Mum around. But, being asked by your mother to give her enough tablets so she can end her life is not at all easy to hear. Knowing I can't do it because then I risk imprisonment hurts all the more.
I could get frustrated - indeed, there are bad pain days when I do get frustrated and angry - because there is so little space for "me". I haven't been able to go outside much because dad doesn't hear if Mum needs something, so I stay in the house and listen. This means I've developed psoriasis (stress as well as lack of sunlight).
I do get time to myself - between waking at 4 or 5 a.m.(pain you know) and starting to prepare breakfast around 7. I try to go out most mornings after the carers have been since Mum likes to nap after their morning visit. And then, after the 8:30/9 p.m. medication and night pad change, I can do nothing.
Life as a carer is not easy. Admittedly some people do far less than I do. Admittedly some people have a far more intense life than I do. But, if you have any spark of caring/empathy it's not easy.
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