Dementia Diary Days 34 - 35
 We’ve Got To Break Her Spirit

I didn't go to the Dementia Care Home last night was up for the local election count last night and didn’t get to bed before eight o’clock this morning, the count came to an end at half past five. Why on earth do I do it? By the way, that’s not a rhetorical question.

Despite only three hours sleep I managed to get to the home on time, just after lunch for the multi-agency review of my mum's care needs. A social worker eventually turned up and she was very helpful in ensuring that the statutory aspects of the local authority’s responsibilities were being met.

It seems that the local social services department is clearly under-personned. Most work part-time. I imagine that the work of dealing with very vulnerable people must take its toll.

Dementia-Devotion.com. We must break her!

An intriguing question about the care of dementia patients

My Mum's condition is deteriorating gently but the personal care remains warm and kind. There was a question asked when Janet, the Head Nurse for the home, wasn't in the room and it was whether I was happy with the care she was receiving as a dementia patient. I said I was more than happy with the care offered by the staff. That of course was the question unanswered. Carers don’t run dementia care homes or any residential homes for that matter.

I had already urged the dementia home's management that if Mam was suffered what were clearly panic attacks again that I did not want her taken to hospital. It was unnecessary and they knew it. Mam may have a poor working memory but her emotions were intact, especially the one dealing with fear.

The staff to patient ratio is a concern, whereas the carers themselves are never a problem. I picked up a strong impression that there was a view out there about the home, which I hope was not focused on the staff. It is their vocation and I am so respectful of that.

Although I didn’t know it then, there was an issue with how the home managed the care of the more difficult patients. Mam was becoming one of them. How they dealt with Mam and the difficulties she presented them was heartless.

It was a home that in its advertising highlighted its ability to care for the more serious dementia cases. That would turn out to be correct if you removed 'the more serious' from the advert.

Before we broke up, we talked about the election and I must have been moithering in a confused manner because Janet drew up to me and asked at what time I went to bed. When I answered eight o clock, she said it looked like it. Charming.

According to Janet, Mam has had a reasonably good morning. She has also started bolting her food down and is always in danger of chocking. They keep an eye on her and her food is cut up accordingly.

I did not pop upstairs to see Mam because I would be back later. I felt too tired to be of any use and when I am like this I become even more exhausted by the despair than usual.

I gave Janet a big hug after the meeting and left her not having answered the question whether I was going to cut the grass or go to bed. I cut the grass and considered shifting a few plants and buying some more little pots.

Dementia-Devotion.com. The moule was a precarious meal

For tea, I risked the moule in white wine sauce. It's not normal to eat something and then consider it a good meal just because you don't vomit. So far nothing. I feel fine but the anticipation sort of spoils a good meal, don't you agree?

When thoughts won't gel

When I visited this evening I have to admit that I felt as knackered as my reflection more than hinted at. I'd bought a family pack of biscuits and a box of Roses chocolates with me. I left the biscuits in the kitchen for staff or to be shared with the patients as they might wish.

I shared the Roses as usual. Curiously there was a general subdued, if not sad mood coming from the residents this evening. Margaret looked poorly and pale. Her bruise is fading quite quickly. She appeared very depressed indeed and wanted to hold my hand.

Sofia looked as cold and pale as last time and Gwendolen looked really tired, her eyes deep-set. Her gaze seemed to shift from her inner world to the outer world, probably trying to make sense of something she couldn't quite get her mind around. Her thoughts seemed fleeting and unsatisfying to her.

I learned that Gwendolen had been up since about 6:00 causing the usual mayhem. So it's understandable that she'd looked tired and surprising that the carers didn’t look any worse than they usually do.

Family Carers learn to survive from one minute to the next

Mam was sleepy and very unhappy when she was awake. It was the state of the house that was upsetting her this evening. In fact the lounge area did look a bit messy. It seems like a dodgy leyline sweeps through the dementia home now and then and everyone is affected similarly.

Mam was confused as to my identity this evening. She was not looking at me. There was another sight she was seeing and her eyes were searching for something elsewhere. I found that I needed to put my face in front of hers to persuade her to look at me when she thought I was someone else otherwise I believe she would have been upset at not seeing ‘Me’ there.

I needed to reinforce the fact, if only temporarily that I am here. I have heard from the dementia care staff that she is always looking for me during the day and will call out my name.

Sometimes, we just survive from one moment to the next. But isn’t that life?

Break Her

One of my brothers had suggested at the beginning of Mam’s stay in care – at the home where she broke her leg twice because of inadequate staff numbers – that we just leave her in there and to visit for a few weeks. To me it felt as if we were trying to break her.

Mam’s memory hadn’t deteriorated badly at that time and so the absence of family would have felt like the worst form of abandonment to her. At least that’s how I felt at the time.

The suggestion wasn’t intended cruelly. We had all agreed that we had to accept and commit ourselves to the hope that the dementia home carers would become her family. Mam was scared and I was unable to leave her alone with her fears.

I forgot. At the review Janet described my Mum's constant wandering as having a purpose, even if that purpose was not known. Apparently, she calls out a number of things, but my name above all. This is distressing. Maybe my brother had been right.

I hate bastard dementia.

Mary ‘The Hitman’ was in action again tonight.

It's the subtle things she does. Again and again. This time her frame, which no doubt she'd been fiddling with, caught Sofia’s foot as she shuffled past in her perpetual search for cups. Over she went, in slow motion, out of my sight but I heard her head hit the floor.

What happened next I found reassuring. Before she'd even finished falling the staff were up and out of their note-taking. Two moved to assess her and Jean tapped the emergency button. Within minutes Janet was in attendance. Gerald went to fetch a pillow and the others were reassuring her.

Sofia had been hurt but thankfully not seriously. Shock and upset more than anything. They kept her where she was while Janet performed checks for broken bones and cuts. There were none. Sofia was eventually raised and sat down while her head was checked. 

It was both the professionalism and the concern in the faces of the staff that I found reassuring for both me and Mam, should anything happen to her.

By the time the night staff had arrived in their dressing gowns and slippers Sofia was sat at the table with a cup of tea and was being interrogated by Mary ‘The Hitman’ about what had happened.

Again, the perfect hit. Neither the target nor the perpetrator could remember what happened.

The supper tea trolley came around and I said I was taking something out to the bin. Mam seemed alright with this. The night staff are nice and kind.

Postscript: Sort of Crossing the Rubicon (ish)

I returned home after stopping in the Spar shop and was asked questions about the election count last night. The lady was shocked to learn that it went on until about half five with only the first past the post counted. They didn't start counting until about half one. I am always disappointed how little interest people take in the democratic process.

I spoke to the whole nationalist complement as well as the Returning Officer about the length of time it was taking and wouldn't it be better to have it verified during the night and counted during the day. The RT told me that it was regional orders. I spoke to the nationalists and we agreed that that the new method of a computerised count stole the theatre and significance of what was actually going on. We all agreed that felt like it had become even more of an invisible event that stole the significance and power of putting a cross on a piece of paper.

Voting has lost its importance. I don't know if it made sense to them but it does to me. Now Gardner's World and I’ll deal with tomorrow’s challenges tomorrow.

Jack, told me that he, a staunch Tory, had had joined the Labour Party for £3 and received a best wishes letter from Jeremy Corbyn. Someone with a list of local members should have spotted that a former Tory Chair was all of a sudden a member. I laughed. I have always enjoyed his company. I didn’t need to ask which way he had voted.

The previous Tory candidate was also there and she was great fun. Not what people would have expected of politicians. For all the world it looked like a colleague was trying to chat up and ask out someone on the other side. Jeremy Corbyn would have been spinning in his grave had he been dead.

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