My mum’s dementia sometimes means that she forget things, especially in the short term. She can ask me several times an hour what day it is; her memory banks are entirely erased between the questions. She once saw a photograph of my father that was taken on their wedding day and she didn’t know who he was. She has even asked me (on more than one occasion) if dad is still alive, even though she went to his funeral more than 30 years ago. At other times she has asked me what he died of, or if he was killed. (He died of kidney failure after suffering another heart attack.) She insisted that a cousin of my father (who also died some years ago, and whose funeral we attended) brought her home from a family funeral a few months ago. She has repeated this scenario at least twice.
She gets confused about money, sometimes handing over 30p when it should be £30. Before she became bedridden she would have a couple of sleeps a day. Often she would wake up and be surprised to see me sitting on her sofa, although I was there before she took her nap. And yet when I visited this week and reminded me that it would have been her brother’s birthday, she immediately knew it was 4 September.
There are other changes that aren’t related to memory. Last year when she became housebound after breaking her hip she stopped wearing a bra, gave up applying makeup and refused to look in the mirror. She always used to be smartly dressed, insisted on wearing supportive foundation garments (bra and corset), never went out without applying slap to her face, and wore shoes with heels even though she had an arthritic back and legs. Above all she used to have a daily bath before dressing. Although she needed an electric seat to lower herself into the tub and then to lift her up again, she had difficulty using this after hip surgery, but eventually managed to get to grips with it again as long as she had assistance.
Over the last few weeks since she became bedridden she can just about get out of bed (again with help) to use the commode in her room; the bathroom is too far for her to manage now, even with her frame. As she doesn’t drink enough fluids, she rarely needs to empty her bladder. Sometimes she tries to get up, sits on the edge of the bed, and then just has to lie back down again.
In addition to these alterations, her personality is changing. She has round the clock care because she gets anxious when left alone. She may say that she doesn’t want somebody just sitting in her room with her, but if I leave her for a few minutes, believing she has nodded off, she soon calls for me and tells me that she needs somebody to be there. If she is left alone for a few minutes after her daytime or night time carer leaves and the next one hasn’t yet arrived, she frequently presses her alarm to call Careline. Whilst she is awake there is very little to talk about now as she doesn’t have a great deal of interest in what is going on in the world. I often don’t have a lot of family news and wonder if it would be insulting to keep covering the same ground as I’m not sure if she remembers what I’ve already told her.
She also gets very impatient with me. If I need to leave her – perhaps to take a phone call or to send an email – I can hear her shouting and complaining in the other room. In her opinion I have come to visit and it’s rude to leave her to do whatever I need to do, or to make a fuss of her cat (as she often believes I am doing). She has been rather nasty with me on occasion, particularly when her hospital bed was delivered and she didn’t want to get out of her own bed. She told the driver to throw me on his van and get rid of me; likewise she made the same sorts of threats against me and my sister when we called for an ambulance a few weeks ago and the paramedics tried to persuade her to go into hospital as they were concerned about her. Life can be so cruel.
The independent, feisty Phyllis of old is a different person. I manage her financial affairs, make sure her bills are paid, and collect her Attendance Allowance. It wasn’t that long ago that she would take the money from me and put it in her purse, and she always kept her bag with her, whether in the lounge, in the bedroom or on the bed. Now it lies on the floor at the foot of her bed and I put the cash into her wallet. She is removed from the world and obviously has no idea that we are using her savings to fund her care. What the future may bring is anybody’s guess and I am in touch with her social worker to find out how we will be able to manage when the money runs out, or if they will be able to put the same amount of support into place once her money falls to the level at which they would help to finance her care. Life can be so cruel.