I am so tired after the trip down to see my mother yesterday. It’s not just the emotional toll, constantly having to re-engage with that which is making you ill, it’s the physical kickback of being constantly in a state of flight or fight because you have no idea what you will find when you get there. I was getting quite frightened of the headaches I was having and the way my eyeballs hurt until I checked in with my teeth and realised they were clenched and grinding and my head was pulled back into my shoulders like a tortoise.
The aggression began as soon as we arrived. My mother and the carer were eating lunch and my mother immediately started shouting and telling everyone what to do. The carer and I exchanged glances. My mother got more and more insistent that the carer had some of the pate she was eating, until I thought she was physically going to stand behind the carer and force feed her.
One of the growing symptoms has been paranoia. This is partly fuelled by my mother’s failing hearing. She was insistent that the doctor’s appointment was for her and none of my business and has been saying for weeks that she hated the way the doctors would send her out of the room and talk about her to me. I was worried. How on earth can you expect someone with no memory to have a consultation with a doctor and get anything out of it at all? If she remembered to tell the doctor the new symptoms, would she also remember the diagnosis or any advice?
Fortunately my call to the doctor’s secretary paid off. At the house the doctor rang me a couple of hours before the appointment, having been re-directed to my husband’s mobile by my son. So the actual consultation took place by telephone before the personal consultation, when the doctor emerged from her office to guide my mother in alone. After a while they summoned me and I asked my questions from my notes, most of which had been previously agreed with my mother and few of which she had managed to remember to ask. The doctor had asked me to take details of the medication, which, stressed out and distracted by the worry of whether we would manage to get my mother into the car, I had forgotten to do but I was able to ring her secretary this morning with the information.
One of the good things that has emerged from the consultation is that the 24 hour care agency is working well. My mother’s heart is better, she has put on a little weight and it is now more than a month since she had a fall. All of this, I am sure, is due to having the professionals there all the time. They make sure my mother gets her medication on time, that she has meals and goes to bed and they watch her when she is moving round so she doesn’t fall. In terms of the actual health of the patient I would say from this perspective that the 24 hour care is very successful and I rang the agency this morning to tell them what the doctor had said and how pleased she was.
The other bit of news to emerge from the visit was less happy; fewer people are telephoning my mother. She has always loved the telephone (well it’s the quintessential captive audience). When my mother was arranging my wedding she telephoned my prospective mother-in-law for four hours. In the middle my mother-in-law excused herself for a call of nature and got back to find my mother still talking, not having drawn breath long enough to notice the absence of the other side of the conversation. In the middle of this week an old friend phoned me to say she had rung my mother who, assuming it was me, immediately got going with the invective. The friend said something, whereupon my mother exclaimed that it wasn’t Jane and hung up. A number of phone calls of this nature would explain why friends are staying away in droves.
My aunt, her sister, who will be 99 in a month, rang her and said she couldn’t speak long, it was midday and calls were expensive and anyway she had vegetables on the stove boiling. My mother was incandescent. What was the point of her sister ringing and saying how much it was costing! Why ring when you had just put the dinner on! How stupid could you get?
It wasn’t stupid at all of course, it was very clever and shows that after being alive for 99 years you might well be expected to have a trick or two up your sleeve. What my aunt had done was keep the lines of communication open, with a built-in get-out clause. She warned my mother the call couldn’t be long, thus restricting the duration of the stress for herself and at any time my mother became abusive, she could ‘hear the vegetables boiling over’ and have to go, without ever having to tell my mother she was hanging up on her because she was being demented.
One of the major factors of the later stages of dementia is the isolation caused for the demented person, and, to a lesser extent, their carer and family There is still a stigma and fear attached to this illness, even though several million of us, at current rates, will have to get to grips with it sooner or later. It is sad that the person who is so ill, is also often lonely and confused and then, apparently to them, abandoned. I think my aunt’s solution was brilliant. If there’s someone demented you’ve been avoiding you could do worse than ring them just long enough to tell them you care and then be called away by someone at the door, or something on the stove.
It’s an entirely new concept, fighting dementia with carrots. I’m all for it.
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