Last night was quite difficult, emotionally.
As you know, my beloved grandma has Alzheimer’s and my mum is living with her as a full-time carer. Over the past few weeks, she has deteriorated rapidly, the ravages of the disease taking its toll on her body as well as her mind.
In contrast to a couple of months ago when we were able to take her out to the seafront and she would walk for a few minutes, holding onto her wheelchair, enjoying the fresh air and, usually, an ice cream, she is now bedbound, barely able to lift her chin from her chest. Her speech is slurred and sometimes incoherent.
My grandparents’ double bed has been replaced by a hospital bed with slide sheets, and she can no longer shuffle to her ensuite bathroom in order to use the toilet.
She has also developed pressure sores, very quickly, despite being turned regularly by my mum and the carers that visit for half and hour each morning and evening. My grandad had pressure sores at the end, but that was after more than eight weeks of laying in bed. My grandma has only been bedbound for a week or two.
Because of the deterioration they have witnessed, and the speed with which her skin is breaking down due to the pressure sores, the medical professionals have told my mum that, from now on, grandma will need palliative care.
Although they haven’t given us a time frame, they don’t seem to think it will be very long.
Our feelings and emotions are, naturally, mixed. There is tremendous sadness and fear at the thought of losing my grandma, but there is also an element of relief, of hope. Hope that her passing will be at home, in bed, and as peaceful as it was for my grandad.
I was there when he died, and his breathing slowed gradually in his sleep until, a few minutes later, it stopped. Naturally. Organically. No gasps, no shudders, no pain. It was so comforting to witness the way he passed, and I know that we have wished the same for my grandma. We don’t want to lose her, but we don’t want her to suffer any more than she already has.
The reason I was especially emotional yesterday was because of something my mum told me on the phone in the evening. The doctor had visited to assess my grandma. While she was in the bedroom with my mum and aunt, my grandma wide awake in bed, the doctor said at normal volume: “Yes, the nurse was right. When it gets to this stage, with dementia, it really is just a matter of time. Lowering the current meds and keeping the patient comfortable.”
My grandma, understandably, burst into tears.
My mum and aunt were silent and upset.
The doctor said “Oh, I hope I haven’t spoken out of turn” and my mum guided her out to the living room to talk, where she explained that grandma isn’t really aware of her Alzheimer’s and that it is not something we talk about in front of her.
My aunt remained with my grandma to comfort her, but she was crying for a long time, repeating “I don’t want to die.”
I feel sick just writing it.
Whilst anger against the doctor isn’t particularly helpful, I am just dumbstruck that a doctor would talk that way in front of a patient, especially without consulting the family first. Perhaps she thought my grandma was “too far gone”, but that is not the case. Where is the compassion? Just because a person has Alzheimer’s, it doesn’t mean they do not feel, nor understand, in the moment, the implications of what is being said.
Despite my churned up feelings, even now, I do know that I need to just let yesterday’s incident go. I hope that writing this blog post will allow me to do that.
The blessing, as my title suggests, is that, despite feeling the pain and confusion in the moment, my grandma has forgotten all about the doctor’s comments now and they don’t worry her.
That should not be the measure of how we treat dementia sufferers though–whether they will remember or not. “Oh, she won’t remember” is never an excuse to treat someone poorly.
I had to get that off my chest, but I’ll end on a positive note.
I actually spoke to my grandma this evening on my way home from work and she sounded, though slurred, quite bright and just like her. She told me she loved me and told me to take care; asked me how work was and whether I was nearly home. I told her I would visit this weekend and she said “You come anytime you like, darling. I’ll look forward to it.”
I love her so much, and owe her the same. I pray for peace and comfort for her now, above all else.