Betty had suffered the dementia for the last few years and was a very nice lady. The first news I heard this evening from Janet, the Head Nurse, was that she had died a few hours ago.
I understand that they had to call the doctor because she had been very unwell all night and most of the day. Betty had stabilised for a while and then just died.
Janet told me the undertakers would be arriving soon and we would all need to distract the residents.
Mam was sat in her usual armchair having a little sleep and I just rubbed her hand and quietly said Hello. She woke up and reached out her arms to me and I am on my knees giving her a big hug. It's nice to do this because we were never a closely affectionate family. We were a loving family but hugs were not on agenda after childhood.
Now I hug as often as I can and share as much love as I can. So we sat next to each other for a while and she reached for my hand. I'm not sure what we talked about this evening but her mind could not move beyond complaining about the pain in her knees. It’s her arthritis and I’d need to have a chat about pain management with Janet next time she roars past.
I didn’t stop in the Co-op this evening, so I brought out a different bag of chocolates. Mam took first pick and thankfully concentrated on opening the wrapper. What’s happened to sweets you could unwrap with a simple twist? Are they only available in these ethnic social museum shops these days? Do they still make chocolate eclairs, the ones with the toffee?
I had sunk into the chair next to Mam and I was so tired that I couldn’t summon the energy and it is quite a while before I get up to share the chocolates. As I mentioned before, the atmosphere has changed a bit; however there is a fair attempt to reassert it. I received a coffee and Mam a cup of tea. That’s usually my job, I complained gratefully.
I am so tired that I count a number of symptoms that I am feeling. Anxiety, Physical and Emotional Exhaustion, Depression and Memory Lapses. A short while ago I thought that I was enumerating the symptoms of dementia for myself. I have gratefully learned that stress can cause similar symptoms of dementia, but are temporary and one recovers of given enough time to rest and recuperate - an impossible dream right now. IN case you're worried yourself check out Mild Cognitive Impairment.
Margaret had gone to the toilet without her frame while I was in my stupor and so I drummed up the energy from somewhere and placed it right outside the door so that she can use it immediately.
I remember Mam's very early days when she hadn't been diagnosed with Vascular Dementia that I attributed many of her memory problems down to old age. For all the world, Margaret seems the same. Her dementia to one side, she remains a formidable and lovely woman.
All of a sudden Mary (suspected/alleged hit-person) was on the scene and for all the world it looked like she was intentionally blocking Margaret’s exit from the loo. Like many people who suffer from the various dementias, some unfortunate aspects of personality can become dominant after being supressed for so long by social mores.
I found myself in a bit of a dilemma. Do I intervene immediately or allow the situation to develop to a Mary-contrived incident and hope to get there in time to stop a contract being fulfilled before my very tired eyes?
I resolved not to pass that responsibility on to someone else and step in to help Margaret manoeuvre past Mary. I stood between them both as Margaret made her way back to her seat. I shared my thoughts about Mary with Janet (Head Nurse) who was on her way to open the door for the undertakers. Janet took a moment to reflect on my allegation. ‘It would make sense,’ she said.
The undertakers walk through and I nod to one of them in recognition. I am now at that age where I wave to undertakers.
A few minutes later Janet arrived in the lounge and gives us all the nod and held up five fingers so I got ready and pulled the throw from my mother's knees and used it as a screen, ready to give it a shake and straighten it out. Gerald, today’s carer team-leader, was on standby ready to act. Like me he was holding a blanket that he would use as a screen.
Janine had been placed in a seat by the window but kept getting up, which meant Gerald has to do his little dance in front of her. After all, a black body bag is the sort of thing that can reach through most illnesses. A minute later Janet sticks her head around the corner to make sure we’re all prepared. We all hear the band strike up and we all set about the screening and distraction.
Janet came and helped me with the big throw in front of Mam and I loudly told her that is so comfortable but needs a wash. And so we fuss. I look over my shoulder and see Betty's mortal remains being wheeled-out with a black sheet over it. I linger temporarily in the safety of emotional distance. After all, I did not know Betty. But that may well be Mam’s exit one day soon, her Vascular Dementia left in her file and she'd be liberated and happy with Dad again.
As Gerald passed, heading back to his duty of preparing people for bed, I mention to him that Betty’s journey is over. A Memento Mori for us both to get on with it. This is no rehearsal. Sitting on clouds or frying in hell, doesn’t need any practice in advance. There may still time to build a store of good memories and love that may sustain beyond the grave.
Jane and Michelle are sat at the table with Margaret and Mary. The latter kept asking about what happened to Margaret and her black eye. ‘I must have fallen over' Margaret kept replying. Mary should be glad of Margaret's memory problems otherwise we'd be picking up the pieces.
I observed to Jane and Michelle that it's the perfect mafia hit. The victim cannot remember being hit and the hit person cannot remember carrying out the hit. Perfect!
About twenty minutes prior to this, before the ladies sat down, Mary has been giving Margaret the third degree for quite a while and Margaret clearly had enough and told her to ‘Bloody shut up’. We had all tittered. No cruelty. Funny remains funny and must be accorded that right to be so.
Janet has managed to find a break in her rushing about visiting and checking on those bed-bound residents and comes to check on Mam’s knees. They are really painful and Mam describes it as a gnawing pain and I can see that is almost driving her to distraction and distress. Janet goes to fetch some paracetamol, which is all Mam can be given without a doctor’s say so.
For people suffering or living with dementia, pain and distress are not the same direct signals you and I might use to locate and describe pain. A dementia patient might tell you that an acute pain in the legs could actually be anywhere and it’s takes a lot of detective work to find out where it is located and directed the doctor’s attention to it. Carers do far more than help people to and from the toilet and being them meals. They are the experts in a dementia patient’s behavioural changes and pains. They are the ones who first notice that someone is declining or suffering from something new.
I will be attending Mam’s case review on Friday, with Janet, Mam’s designated carer for the day and someone from the Community Health Council. I will need to bring up the topic of pain management; that I do not think it is high enough. According to Janet this evening, whatever Mam is on is not strong enough. At the moment she feels that Mam is receiving a homeopathic dose.
The pain is real, we know what causes it and so the pain relief should be upped. I will also mention that I want the opinions of the staff to be attended to seriously and I do not wish her sent to hospital on some casual whim like last time when she came back to the home at 4:30am. I heard that she was very distressed indeed.
There was laugher from the big table and I turned to see Gwendolen wander past and up toward the dining area with a blanket over her head. It made her look like an East European peasant woman or Mother Courage, I suggest. There is laughter and, as I always insist, it is not laughing at someone but laughing with. I am pleased to report that Janine thought it was funny.
Janine has a wonderful sense of humour that her dementia has not stolen from her yet. The progress of her dementia symptoms will eventually dominate and mask her real personality; however, for now she is kind, loving and funny.
Sometimes, things are just so darned funny and it is a healthy laughter you hear. If Gwendolen was ever offended then she would take us all on. She carries on. As I leave Mam still in pain and with Janet’s promise to talk to the doctor, I find Gwendolen in the corner of the dining area with the blanket over her head and shoulders keeping an eye on anyone passing. I wonder where she is.
There is nothing I can do for Mam. I am more exhausted leaving than I was when I arrived. I have to leave her in the care of the night shift who are already coming in now. They have already changed into their nightclothes. It seems to reassure the patients that they’re not in a hospital-care setting. The occasional sudden realisation can cause unnecessary distress.
It has been an unusual kind of Bank Holiday for me. Like everybody else, I have my plans. Most of which are tied around the garden and tidying up. The problem I have more so these days is overcoming an enormous amount of exhaustion and inertia. I could probably put it down to depression, whether chronic or just acute, I don't know.
I realise that I am never up to much more than pottering about and so this morning, after a bit of a walk up and down the track, while the washing machine was on I cooked myself a fried breakfast knowing fully well that it is no good for me. But I need savoury and hate cooking for just one. Instead, I cook crap. Tasty crap at that. It was something I looked forward to as a form of reward.
A nice green salad would have done just as well, but I only enjoy eating salads with company. I used to make Suicide Salad for Mam and she enjoyed it. I’d make a very mixed bag of salad and fruit and very finely chop some red chilli into it. All of a sudden Mam or I would bite into the chilli and gasp.
It was amusing and harmless and it made for a fun topic of conversation even as Mam began to slip away.
While my feelings and love for all the dementia patients is growing with every laugh, hug and nice manners, my hatred of all aspects of the bastard illness, dementia is growing beyond all ability to express.
I watch Mam and all the people around her diminish in to the shadows and imagine that while they stand before me physically, there is a part of them reaching out in agony for help to escape.
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.
Eventually after lunch I gathered together the implements required for repotting the tomatoes: compost and perlite. I first had to find a quiet place out if the wind and eventually decide to do it in the lee of the wall in front of the house. More cows and calves arrive as I am doing this and I can see that they are excited to be here. The calves are running around while the cows check out the area, probably for safety. I wave to the farmer and his brother.
I am always glad to see them, as it means Spring is definitely here and in their opinion it is warm enough which means that it is warm enough. I look at the calves and they look at me. Sweet looking beasts. Mates obviously.
I repot the Marmande and St Manzano, potting them half an inch deeper than they were in the congested pot tray. This should guarantee strong plants with plenty of roots and that means more fruit. I am still uncertain about the greenhouse at the top of the road and am thinking about buying one or two of those reasonably sized plasticky ones. I need to buy some chillies as well.
Time is running away and my cousin had mentioned that she would love to go to the Dingle to see the bluebells. Same here, and also in the hope of seeing red squirrels.
We met one of the Sisters from the local convent and two colleagues who have been wandering about for two hours they tell me. I was delighted by the news that they have seen red squirrels. The Sister told me that they have also seen some in the nature park near where they live.
I proposed the theory that there is no way they could have arrived there other than by bus or by a car screeching to a halt at 2:00am in the morning. A door opens in the dark of night and the poor buggers are chucked out. Car screeches and races off again. It's an amusing theory that I am certain the local Red Squirrel Group will dispute; however, the beautiful and handsome little buggers are turning up everywhere these days. Glorious.
We met people we were at school with and I realised how old and knackered I must look. I persuade myself that I’m okay. The crippled me inside may not have crippled me outside yet.
Again, we heard news about the squirrels they’ve been seen. We advise them that they should stop and listen in the woods for the sound of a small trapdoor being slammed shut. The squirrels diving in and out of the food boxes. It is a dead giveaway. I also mention that you will inevitably see a squirrel two out of three visits.
We wander onwards but do not see any squirrels. It's not our 67% certainty day. We wandered as far as over the bridge before it started raining. I had a jacket and thankfully I am tough. So we turn back.
It was a near downpour before we reached the shelter of the woods. Still no sign of the squirrels. However, and I don't know how I do it, I spotted a little squirrel at a box I was barely aware of above the path.
If they are there, no matter how well blended into the background I seem to be able to spot them. This little creature was just that. Little. Tiny. Cute. A youngster and he or she was intrigued and turned its head this way and that to focus on us. It was smaller and not of the same richness in colour as the adults, but cute as heck anyway.
We stayed about five minutes but decide to leave when we hear a bunch of hooligans - kids having fun together.
Someone who was also at school with us - a real menace - was at his garage putting his bike away and we had to scramble across the yard when he's out of sight. It was raining heavily, but we both preferred the rain to certain company.
My cousin made us a 'little tea' and I fed the cat who is now conditioned to receiving Pockets every time I arrive. She reckons the cat likes me. I think this is only another strategic manipulation of the closest available stupid human by a very clever cat.
Then I was off to see my Mum and to answer Janine’s questions about her Mum and Margaret and Gwendolen’s about what time the bus will be arriving to take them home. I stopped in Asda and bought some sweets to take with me and bring a sliced batch loaf and two bottles of beer for me.
At home later, I go and have a quick look at the back garden and a little wabbit rushes from the flower patch. Bastard or Bitch, as is appropriate. This means that I will have the usual trouble as last year with new plants in the garden.
I will need the rickety plasticky greenhouse after all so that I can at least grow the seedlings in peace before thinking about putting them out. It's a need and a solution.
So at least I have a plan. Do I have the energy? That’s the question.
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