Dear Dementia Diary,
I have to admit that it was a bit of shock to see the state of Margaret this evening. Her right eye was swollen, almost closed and the bruising ran from darkest blue, through purple to black. In fact, more than half of the right hand side of her face was heavily and painfully bruised. A thin trickle of blood ran down past her ear.
The source of the blood were a number of significant dark scabs on her temple, almost lost in the dark bruising. Margaret was looking at the blood covered fingers of her right hand with some bemusement and looking puzzled, not confused. One thing about Margaret dementia is that her Alzheimer’s Disease while crippling her memory is being subdued by her iron will and she remains switched on good and proper.
Dementia is a broad collection of symptoms that occasionally present regular enough to be given a fixed name. People are treated individually according the dementia symptoms they themselves present. As the disease, however it presents itself, progresses the labels become less important as palliative care becomes the priority.
I forget which dementia I’ve heard the carers mention – not that they do so intentionally. I know that it is a matter of pride and a sense of overwhelming responsibility for them, because they value and respect the privacy of those for whom they care.
I think most people here suffer from a variety of symptoms of dementia and, like Mam, it’s mostly Alzheimer’s Disease and Vascular Dementia.
In the middle of the carers busy-ness, I know I become invisible and only appear in their consciousness if I turn up next to them with their coffee or tea. Those who ask for a double strength coffee worry me. This tells me that they are working under great stress.
As I say, Margaret was scratching the scabs and staring at blood on her hand. She looked at me and reached out the hand to show. I am spared having to guess at what has happened and explaining it to her when Janet, the Head Nurse, pops up and puts on a dressing to remind her it's there and to not scratch.
I am an inveterate scratcher and so I'm on her side. Or at least I would be if she gives them time to heal more. When the blood has not coagulated properly now is not the time. Go find a friend's cat that's recently been in a fight. Pick those scabs for now.
I have no idea what happened to her and did not get a chance to ask Janet, who disappeared quickly to deal with some new crisis down the other end of the long corridor. Down there is Gwendolen territory, which means absolutely anything could be happening.
Since Mam arrived here, a couple of people have since passed on, people whom I have spoken with and smiled with. I have seen their deceased bodies being sneaked out while the staff distract the patients.
I think of Gwendolen’s indomitable spirit, struggling, fighting their dementia and insisting that what she sees revealed to her is what she must deal with. If the gate to the field is open, then she will go and close it. If someone needs a telling off – me on so many occasions – then that person is admonished. Good and proper. At least I can remonstrate and I occasionally do, sometimes just as I would someone who is not ill. Bad behaviour is not tolerated in good dementia care homes I've been to. A firm telling off is issued rather than tablets. I like that very much.
Margaret is equally strong. However, their dementia symptoms will reach a point where you will break your heart every time you see them, remembering their vitality and twinkle. Is it immoral that you long for their suffering to come to an end. We can only guess at their suffering and all we know is our own pain and anguish and we make decisions based on ourselves.
Tonight, Janine seems more distracted than lost. Her head and eyes wander about the room, as if seeking some meaning or maybe remembering that she once had a husband who died tragically. Her daughter, a friend, tell she me that Janine seemed to never recover from her grief and although the symptoms of dementia must have been there or masked by grief, her mental decline came frighteningly quickly for everyone.
Margaret, on the other hand, sits there quite contentedly and occasionally smiles at me and Mam and makes an observation about the weather (I hope she doesn’t get her weather reports from Gwendolen). As ever, one of the carers pops by from other duties – not enough of carers - and is rewarded with a beaming smile and a lovely thank you from Margaret when asked how she is. She’s forgotten about her injuries for now.
Stroke is probably the most significant cause of Vascular Dementia. It pays to be aware of lifestyle choices that might lead you there. Click Here
The carer asks how Mam is and I say, ‘We’re fine, thank you’ and Mam asks how she is. If good manners have been ingrained throughout a person's life, then don't be surprised when your good manners are responded to likewise.
I am told that that it was Mary who was responsible for Margaret’s injuries. Apparently, Mary had visited her in her room and insisted on some matter or other. I am sure that Margaret must have told her to Bugger Orf!
Anyhow, Mary pushed her over. Margaret, who needs a Zimmer frame to move about, had fallen against her bed and side table had to be taken to the hospital for stitches last night and did not return until the early hours because of queues.
I had guessed early on that Mary was trouble with her interfering manner and determined persistence. If she had been a church- or chapel-goer in her conscious active life, then she must have achieved a great deal for the Good Lord. Hectoring brings its own rewards.
Betty was calling out again incessantly. Charles was quiet.
Mam seemed to be in a pleasant place tonight and I guessed that there might have been a temporary adjustment to her medication. It was once again one of those moral questions Mam’s wellbeing versus my own anxious mental state when she is in some specific horrible dark place and is terrified and crying. This evening, I took it as a kind blessing for both of us and was happy to just sit there, letting her hear my voice as I held her hand, which she would pat now and then, and talked to the other lovely people sat around or wandering past.
Once I had gained access to Mam’s bank account, the first thing I do was go put and buy clothes for her. I suppose that I would have had to use my own money eventually had her bank account not been open to me. I have no money and the last two years before mam went into hospital and then care, had almost bankrupted me and put about sixty thousand miles on my little car. While Four-Wheel Psychology worked, then it was worth the cost and wear and tear.
Rules and regulations say that I can claim expenses for travel as well as buying clothes, I never have. I never received a bill from her or Dad.
An aside, and a gentle warning for readers, good Dementia care homes are forever wary of infection because of a patient’s loss of care about hygiene. Consequently, when they do a wash they tend to boil wash everything.
That is why I had been desperate for Mam's bank account to be opened. In care homes where this happens over time the difference between poor and relatively wealthy soon becomes apparent. The poorer individuals wear clothing that has shrunk and the colours are no longer vibrant.
Tonight, Mam was wearing some of the new clothing my cousin and I had bought for her and looked smart in sharp black trousers and a friendly dark jumper. Her hair had been brushed and she positively beamed when I arrived. As I say above, I suspect there had been an adjustment to her medication. I should ask. Guiltily, I don’t and accept this respite for her from the monsters form the past who sometimes call by so casually.
Janet came and chatted about the bed and also about the upcoming review on Mam’s case: Progress of the illness and whether there had been any significant change in the symptoms of dementia that might demand they move to another regime of medication.
Janet used to be a psychiatric nurse. Very robust and pragmatic in her overall outlook even though in her own private life she has appealing illness to deal with when she goes home. Maybe she is like me and finds here, her workplace, far more congenial than real life. Considering the bullying going on at my workplace, I would say that I also feel better here than anywhere else in my life at present.
My life in the background is appalling. Workplace bad and once friendly relationships destroyed. Yesterday morning, Nell at the office received an invitation from her son to visit the family.
She went. She finds the entire workplace intolerable and upsetting.
Gwendolen looked paler this evening. I understand that her day has been turned topsy-turvy and that she now wakes up at seven or so each evening prepared, loins girded for havoc. Someone had upset her and she was angry and from my own safety point of view I agree with her and try to be as pleasant as I can be. I don’t wish to be the object of Gwendolen’s ire. You daren’t turn your back for fear of a whack.
Busy and ever-worried looking Sofia is uncommonly quiet this evening and not on her usual cup stealing rounds. Neither is Robert in sight. I wonder where he is where he is (that last bit actually makes sense).
Margaret genuinely thanked me for helping her. Mary sat initially close to us and then went to be helped to change into her night clothes and dressing gown. Take away my suspicions about her being embedded her to carry out a mafia hit, she looks lovely. I do find her a bit difficult to deal with but never fail to offer her a chocolate unwrapped. You’ve got to watch your back, haven't you?
Before going to buy more new clothes I check again with the carers because they are the font of wisdom and experience. We checked everything for size and I was advised elastic waists are best.
Your Own Mental Health
Being a family carer for someone suffering from any type of dementia can be very exhausting. It is very important that you look after yourself otherwise you cannot fulfil the role that you have chosen for your self, or find yourself in because of circumstances.
May I respectfully guide you to check out these links, which I hope you will find useful and supportive.
I arrive later this evening because my cousin insisted that we have a meal before I went and she wanted to do some shopping. Ever faithful to her and her wisdom I am relieved to be told what to do.
Lunch in Morrisons was roast beef and it was absolutely lovely. I eat the fatty bits off my cousin's plate. After all, she might be on a permanent diet, I am not and always reminded when I see proper food just how appealing my own diet is. Man cannot live by fishfinger sandwiches alone. I appear to be doing just that. That and five cigars a night as a counter hit. I also bought some sunflower seeds while I was there.
We stopped at a general hardware store before lunch to have a look at bedding plants. Plenty there, but it’s still too cold to put them out and we might as well allow the shop to store them for us until it's warmer. However, I did buy night scented stock to go with the sunflowers. It's still okay to sow them in pots as they would be struggling outside. A few more weeks to plant them inside.
Then it was to Tesco and Curries to help my cousin find a new laptop and after a couple of shops she decides on a Hewlett Packard. She will first check this out with a work colleague’s father who is a bit of a whizz kid.
Then it was on to Laura Ashley. Things are nice and I am reminded that quality stuff is expensive. TK Max next, where I bought a kitchen knife (not sure what to use it for – whittling in my old age maybe), some citrusy scented soap and exotic coffee (or 'erotic' as someone I used to work with used to say - mistakenly!! I should have taken her number).
It was more shopping than I had done in ages and in a single day. Not too traumatic it turns out. In fact, I wished that it would just keep going on and on. At that stage, I did not know how Mam would be when I got there later. Not good for one’s increasing anxiety and stress levels.
Back to town and take tea at my cousin’s. A lot of food for one day, for me. Then I was off to the care home once again, hoping for a gentle evening just watching and listening to ‘Songs of Praise’ with Mam and hoping she would sing. I had bought biscuits to share this evening but forgot them in the boot of my cousin’s car.
I am able to leave early this evening and not be a source of distress for Mam with my feeble excuses about fetching milk and bread or for me. It’s never easy to leave. Tonight felt okay.
Tomorrow is Monday and I and two of my colleagues will have to endure the vile petulance and nastiness of the inadequate. Is it any wonder that I long for escape or a convenient mild heart attack? Nell admonishes me for that last hope.
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