Martin and other family carers are supported by the brilliant local charity Carers Bucks. We would like to celebrate all that they do to make a better life for the estimated 1 in 10 adults of Buckinghamshire who are Carers (52,000 people!)
When my Mother had a fall and was admitted to hospital my life changed. I stopped work and found myself caring full time for my Father, and also for my mother when she was able to return home. He has Lewy Bodies: a progressive form of dementia which affects both memory and mobility. Whilst my Mother has steadily improved and is now more or less back to the good health she enjoyed before her fall, my Father has steadily deteriorated. He is now in the seventh stage of his dementia and although not in pain he requires 24hr care.
I suppose my day usually starts at 6.30a.m. when I try to wake my Father to administer his medication and eye-drops. He is quite often very difficult to rouse, and we were finding that if we left administering the meds to his carers they spent all their time trying to get him to take them, leaving them no time to wash and dress him.
The carers come at 7a.m. There are always two of them now as my Father is unable to lift himself, or roll on the bed. They wash and dress him while I check with my Mother what is in the diary for the day and start preparing my Father’s breakfast. Once the carers have settled him in his armchair I start by giving him the next lot of medication, and then try to feed him his breakfast. He always has a bit of fruit in the morning, and usually toast or porridge, but sometimes he asks for something different like bacon and egg, or kippers, and we try to have these available so that he gets what he wants. Today he asked for fish and chips so I cooked two fish-fingers and some oven chips. Feeding can often take up to an hour as my Father’s mouth doesn’t always obey his brain, and he has a tendency to chew his food much much longer than is normal.
After breakfast he usually has a snooze which allows me time to eat my own breakfast and do a few household chores. There is washing to be done several days each week, particularly if my Father has had an accident in the night and pulled off his convene. It then gets hung in the conservatory to dry before being folded and put in the airing cupboard.
About mid-morning today my Father woke saying he needed to go to the toilet. This is quite a tricky operation: sometimes he will be able to stand to his “Sara-steady” frame so I can get his trousers and pants down before he sits on the commode but today he didn’t have the strength so I had to use the hoist. I transferred him into a wheel chair, and then used the hoist again in the bedroom to get him onto the bed. Once there I was able to get his trousers and pants down and change the sling for one suitable for use on the toilet before transferring him to the commode. All he managed was to pass a bit of wind, and then the whole process had to be reversed to get him back to his armchair in the living room.
Today we had a sitter come at 11a.m. to look after him while I took my Mother to a church group. I go in to Oxfam once a week as a volunteer to do their accounts, and I also popped in to my own home to feed my dogs and give them their medications. I have to remain within Chesham in case he needs the toilet as the sitters can’t manage him on their own so they call me on my mobile and I rush back. Fortunately, today wasn’t one of those days. Three days a week I take my Father to a day centre which gives me a couple of hours to myself and to do the shopping.
1.45p.m. and I was back at my parent’s house ready for the sitter to go home. She had read to him and fed my Father his lunch which is delivered by the excellent Appetito meals-on-wheels service. Once she had gone I tried to lift him in his chair – he tends to slide down over an hour or so but can’t get back up again. The change in position helped for a while but then his back started hurting so I took him through to his bed (hoist – wheelchair – hoist) where he had a siesta. That gave me time to check my emails and make some phone calls. We have requested a Continuing Healthcare assessment, but the CCG have lost the paperwork that the nurse sent them three months ago and so there have been numerous phone calls to unhelpful bureaucrats who seem convinced that it’s the person with dementia who should be sorting it out, not them.
My Mother got home from her meeting quite tired so she too went for a rest, but then was off out again for a falls prevention exercise class in the late afternoon so I was left supervising my Father. On days when she’s not out she will sit with him while I work in the garden. My parents have a large garden, and they were both keen gardeners, so I try to keep it looking beautiful and also productive. My Mother loves to walk round looking at the flowers, and most days I take my Father out in his powered wheel chair so he can inspect the potatoes and fruit trees which were his pride and joy. I spent several months over the winter laying a circular path so that I can take him all round the garden, and have built a ramp to get down from the back door to the patio.
At 5p.m. my sister dropped in on her way home from work. This allowed me an hour to nip home and see my partner who had cooked me some supper. Once back at my parent’s house I sat with my Father while my Mother had her tea, and then at 7.30p.m. the evening carers arrived to wash and change him ready for bed.
I watched an hour of T.V. with my Mother before she went to bed, but whilst I have been writing this I have been called through to my Father four times. He often gets hallucinations, and needs calming down. I can now hear him gently snoring so will hopefully get a good night’s sleep, but we have a baby monitor and he sometimes calls me several times in the middle of the night. Often this will be to ask the time, for a drink of water, or because he has thrown off his duvet and is cold; but sometimes he will be calling for his brother or sister, and has obviously been dreaming about his childhood.
So that’s my day. I love both my parents very much and whilst caring for them has taken over my life, I want to do this for them. After all, they cared for me!
For information and support for carers: please refer to Carers Bucks http://www.carersbucks.org or call their helpline: 0300 777 2722