A fraught subject, I believe.
Experienced readers (hello) will know that in the five plus years that I was a carer for my demented mother I never took a day off. In all the years I was looking after my mother-in-law I didn’t either. I couldn’t, the in-laws descended every fortnight for four days, I had a baby and increasingly less money. The experienced reader knows that I ended both terms of responsibility with cancer; I am certain brought on by stress.
I have never been much of a one for holidays, I never had the money. If one of you is taking a holiday in the pub every night, that is it for holidays. When we went to Rome I took a couple of notebooks in case I had to work and interview someone (I didn’t really have the concept of not working.) I also think sitting on a beach with a load of strangers, nurturing your melanomas is a bit pointless. I do like a foreign museum. We went to the Hague for work for the OH, and while he was in meetings I went to the Mauritshuis, which was astounding. They had hung the Girl with a Pearl Earring just above head level on invisible wires. Seemingly as if she were a tall person in the crowd looking back over her shoulder at you. The painting looks like a hologram and the actual work far surpasses any reproduction or image you may have seen. You wait for her to breathe or speak. You can pop your Jackson Pollocks up your Mondrian for me, people that look better than real and beautiful landscapes are where it’s at for me.
So you could say that not having a holiday whilst doing the caring was not that unusual for me and I would have to agree.
When SMIL’s daughter emailed to say she was planning a holiday and what did I think, I was encouraging. Very soon after diagnosis SMIL and I had a talk. She knew she was not getting out of it alive. She knew I had had cancer twice after being the carer and she was frightened that her daughter, who had already had cancer, would get it again after caring for her. I made no promises, because I don’t, but all my interactions subsequently have been focussed on getting SMIL’s daughter out of this alive and well. In my time as carer I had no one to go to, even for a quick moan and I don’t think it helped. The OH as usual disappeared into the pub, which is his way of dealing with difficulty, so I was left alone worrying until bedtime. This circumstance, is of course, the reason for dementia diaries. I am always here, if you are a carer and want an ear just click on the box at the bottom that says ‘leave a comment’, your email will come to me and I will reply. I will not tell you what to do but I have endless sympathy and big ears.
So I encouraged SMIL’s daughter, thinking maybe a week away somewhere. However, what the daughter was planning was a month away travelling in foreign countries. Holiday of a lifetime sort of style.
If you put a relative into a care home, the home then legally has a duty of care. If you are the next of kin, in order to cover themselves and prove they are doing their duty, they will then contact the next of kin if anything untoward occurs. The experienced reader knows that as soon as a demented person feels themselves to be slighted, abandoned or if they detect any variation from the norm they will act up.
I hardly need to tell you what happened next. The home phoned the daughter nearly every day. SMIL had had a fall, SMIL had been threatened by another resident, SMIL had bitten one of the staff. At one point she looked poorly so they called paramedics who carted her off to hospital, just to make sure. The Home called me at half past six in the morning to say they couldn’t get hold of the daughter but felt duty bound to tell me SMIL was back in the care home, had had a good cooked breakfast, was full of the joys of spring, having had a nice outing, and was now tucked up in bed.
There are still three weeks of the daughter’s holiday left. I did request the care home to ring me instead, because an alarmed phone call every day had left the daughter on aeroplane standby and living off her nerves, though she said bravely in her email that she was glad to be involved.
In the week SMIL has been at her worst. As she was throwing the phone away or attacking the carers, and difficult to talk to, I sent a little parcel midweek with a card, a jigsaw and some sweets. SMIL must have received it this morning, her language was just slurring but the tone was cheerful and she wasn’t being vicious to anyone.
Caring for someone with dementia is a balancing act. On one end of the scales is the demented person’s health and well being, on the other end, that of the carer.
I also have friends caring for family members who have planned holidays with the demented person, not far, familiar and not long, knowing it may be the last holiday. I know of two of these so far. It is and it isn’t a holiday because there is no break from caring if you are taking the demented person with you.
A lot, of course, depends on what stage of the illness the demented person is at. In the later stages, or with some types of dementia, anything that is out of the usual will add to the problems. So, whilst I do not give advice here, if you are used to having a holiday every year in the same place, this is ideal for demented people as long as the disease is not too far advanced. I would think maybe arrange an alternative carer for a few days afterwards, to recover from the holiday yourself.
You may well say that the best course is to wait until the caring job is finished and then have a good holiday, but as you know, by the end of it I was broken, ill and skint.
Perhaps your best course as a carer is to build-in rest days from the start. Maybe alternative care one day a week in which you are incommunicado unless in case of imminent death, or some such.
The problem with constant communication, is constant communication. I think, in caring, that is the thing you need to find a way of switching off. At first in the disease it may benefit you to know what your demented person is doing all the time but as time marches on and the disease wears you down, you need time off worrying. This is not being uncaring because no amount of worrying will cure the disease or make it go away but a holiday from worry will fortify the carer so that they can continue to care as long as is required.
I personally believe that exercise, fresh air and meditation are as helpful as anything. And plenty of sleep. In sleep your own brain will sort it all out for you. Recent research may implicate insufficient sleep as one of the triggers for dementia.
Get your zeddz and go for a walk, caring for someone with dementia may be the hardest thing you ever do, if you are doing it, I hope it is. Well done for caring however you do it, stepping up instead of running away is brave and will take more out of you than you knew you had to give. I salute you.