I haven’t written about Wednesday until today (Sunday) because that’s how long it’s taken me to recover from it. I am fine now and would like to thank kind readers who email, concerned for my welfare. Over the last two or three years when I have had all sorts coming at me from every angle I have been extremely fortunate to have a couple of friends who have routinely expressed their concern and kindly asked after me. It makes a difference. It really does. At this stage family have either long lost interest, are frightened or are staying clear in case they get asked to help. Only two of my mother’s friends still bother to visit, at about three monthly intervals. I am so grateful they do that. Visiting my mother is hard work. Few folk spare a thought for the carer. I haven’t myself for family members in the past much, partly because I didn’t know what to do or say.
If you are reading this not because you have a demented or sick relative but because you have a friend with one of those, the way to support the carer is quite simply to ask how they are doing at regular intervals. My wonderful friend rings about every third week. We are helping each other, she had an awful father who died earlier this year leaving her deep in the clarts after having abused her her entire life. Coming from a similar place we understand each other perfectly. There is also an issue with the dreaded alcohol. There are also some fairly ghastly family members misbehaving. We have a lot to talk about. Another friend just sends a card saying thinking of you, occasionally, believe me I treasure those cards. Other friends are regular readers who email if it’s dreadful and ask if I’m OK. Really if you are supporting a carer, I think that’s the most important thing to do. Whenever you think about them just get in touch and ask: are you OK? Listen to the answer or the diatribe, make nice noises send love and leave. That’s it. You don’t have to provide suggestions or answers, just be the absorbing ear and shoulder. Remembering to keep doing it is the hard part.
I was so grateful for my friends this week.
It all began on the way down to my mother’s with a warning light blinking in the car. I read the manual which advised the driver to drive as if over upturned tacks in the direction of the car dealership forthwith. Oh good. We had set off early as we were going to my mother’s doctor to meet the manageress of the care agency to discuss the order to allow my mother’s carers access against her wishes under the mental health act. I had done all the shopping the previous day in the rain, so we had time in hand and how glad we were at forty cautious miles an hour that this was the case. At the docs there was a bit of a to do about where we were meeting, I intercepted the doc who was about to dash to my mother’s house. Happily the manageress turned up as the receptionist phoned the agency for me. In the doc’s office I was so pleased to see that the manageress had done her homework. She had prepared a document of several pages, outlining the provisions under the mental health act for gaining entry to the house of the client by the care workers in order to provide the care, and left spaces to be signed by the doctor and the small committee that would be convened to agree to this. The groundwork had already been laid over a year previously, of course, when I had obtained exemption for my mother from paying Council Tax on the ground of mental incapacity. I had had to generate a letter and get it signed by three doctors. I submitted it to the council. So the position that my mother had mental health problems which occasioned the continual presence of carers in her own home for her safety was already well established.
I would opine that in the case of caring for someone with particular difficulties where agencies other than yourself are going to be involved there is no substitute for taking all the steps in the correct order as fully as possible at each stage and keeping all the documentation. It might seem a right pain at the time but having done the right thing in the right order and having the paperwork to prove you have done so is helping yourself in the future. I admit that I have stopped keeping all the receipts for all the shopping, or indeed any of it. Sometimes I buy the food for the cats of the S&H and my mother’s cat, sometimes she does. I used to ask her at first and she was interested in adding up all the bills. Now sometimes she isn’t well enough to watch as I unpack her shopping. This week I paid for a present for her sister from us all, next week she might pay for the take-out when we get home if I’m too knackered to cook. I consider it my responsibility to look after the physical needs of all the people involved with as little fuss as possible. But in terms of official paperwork I keep everything in triplicate and carry with me a massive folder with paperwork from all official agencies so that I can at any time provide, for example, her solicitor, with a copy of everything.
Back at the doctor’s I was so glad to see the manageress was reading right off the same page. She and the doctor got on well. She offered to speak to group meetings about dementia and we all talked about what a hot topic dementia is. I explained to the doctor that our car being dodgy on the way to my mother’s is only one of the reasons I might not be able to get there in a rush and that therefore the document allowing the care agency access was a necessity. The manageress also asked the doctor if he would supply a mood enhancing drug to assist with the care of my aggressive mother. The doctor showed a list of possibilities, she expressed a preference. I said whatever was administered it must be at the lowest dose possible and that I would consider nothing that would make my mother’s perceived constant motion or dizziness worse but that I did see the pragmatic considerations were for my mother’s safety, I said that she had only once in the year I’d been living there threaten physical violence but I could see it might become a possibility if she became just a little more aggressive. I also said that my mother had gained a stone in the last two weeks which I felt was good, greater body mass perhaps being a helpful factor in introducing new drugs. The doctor agreed with me that extra drugs were to be avoided unless necessary and that it would be a low dose and that he would put out a prescription immediately.
I then asked that in future, rather than taking my mother for check ups to the hospital clinic, the doctor would make house calls because I was concerned about taking an elderly person on oxygen out into the cold air in the winter, with which opinion the doctor heartily agreed. I asked the manageress if she would email me the relevant mental health act so I could include it in this blog which I explained I was doing as the situation had changed so little for carers since I’d been a carer for my mother-in-law thirty years ago. That was the visit. So productive thanks to the good preparation work of the manageress.
At the house my mother was aggressive and tired but trying hard to be bright. Later in the afternoon someone from the office arrived with the prescription. Meanwhile, while my mother had been on a bathroom break I smuggled the sword upstairs and breathed a sigh of relief. It is just so nice to hide a sword before your demented person runs it through the carers. As a plan of action I would really recommend this, even if you do none of the other stuff. My other half spent the entire afternoon on the phone and managed to get free recovery for the car with an arrangement through our bank account. So we rode home in a tow truck with the car lashed on behind and went straight to the garage, who thought they might be closed but turned out to have stayed open and then the tow truck driver drove us home.
An unbelievably exhausting day. Now three days into the pills my mother is still complaining of everything but in a much gentler tone of voice. She is still completely herself, just herself at a lower volume. I had spent a couple of sleepless nights, worrying about the medicalisation of old age and arguing with myself about the ethics of this. I am glad I put in a word for the lowest dose and I am even more glad of the outcome, which is less stress and better care all round. My cousin had bravely been for a brief visit yesterday, my mother said he’d arrived talking about a dinner they were going to go to and how short a time they could stay. Very wise. My mother said the visit had been brief but happy. At this stage of proceedings I’d consider this as perfect as possible.
I must go. My other half has stood in the cats’ bowl of water which is my fault apparently. The little cat brought a mouse in last night but I opened the front door and showed the door and the mouse to the big cat, who took one through the other. After half an hour I let them both back in and the big cat got extra cat treats.
How am I managing in these dark days? Well, I have friends. Some send cards, some email, some ring and some are covered in fur.
And I get by with a little help from my friends, a little help from my friends, a little help from my frie e e e e ends.
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JaneLaverick.com – getting by.