Since my last Dementia Diaries post in March things have worsened considerably. My aunt had her 90th birthday party in a village hall some twenty miles away, and for the first time, I realised that Mum was too far into her Alzheimers to attend. My parents have never driven and my husband and I always take them along to any family occasion, they have never once been left out of anything. It was my aunt who suggested that it wouldn’t be a good idea to bring mum “she’ll want to go home as soon as you arrive” she said. That was very true but it was also the fact of Mum’s urinary incontinence. If the M25 is at a standstill we would be in the car for an hour both ways and the village hall toilets wouldn’t be a vey private place for dealing with any accidents. My aunt had a wonderful time, she was chatting to her one hundred and eighty guests and got up to dance. Mum, on the other hand, can barely get out of her armchair. It really does seem like a lottery as to what sort of old age, if any, you get to experience. My parents have really lived a very healthy life but, for Mum, it doesn’t seem to have paid off. I suppose living to eighty nine is a privilege in itself.

Mum has started to become more and more resentful of my visits and her constantly telling me to “go home” has now changed into “bugger off”, something she would never have said pre-Alzheimers. Dad and I have been trying to persuade her to let me help her bath or shower but she refuses. The last time we gingerly raised the topic it resulted in an hour of nonsensical arguing and Mum pretending to cry. It is as if we are somehow abusing her rather than trying to help. It makes me feel terrible to see her so confused and distressed. Dad can’t help her, if Mum slips she will take him down with her, they are both now so frail. Dad wants to arrange for their mobile hairdresser to visit along with the podiatrist and I said we can’t expect these people to tend to Mum when she is not clean. We are both worried about her developing sores or an infection. It is so difficult because what do you do when someone point blank refuses to bath or shower?

I filled in a request for a Care Assessment on the Kent Council website and it took about six weeks for the visit to happen. A lady called Sarah arrived at my parents house. It wasn’t quite what I had expected. Dad and I explained the issues, although it is very obvious from the moment you walk in the front door. Sarah said that my parents are not entitled to any free care (my dad does now receive enhanced attendance allowance which a local charity helped him apply for) but that the council can recommend some care agencies. Sarah and I went upstairs and she said that some of the carers will do cleaning as well, she commented on the strong smell of urine in the bedroom. Dad opens the windows and Mum closes them. I vacuum my parents house, clean the kitchen floor and put the laundry mountain away twice every week but I hadn’t cleaned their bathroom as I haven’t been allowed. To be honest I was a little embarrassed when I saw how grubby it was. Two days later I was back over there with a bottle of Cif and some bleach. Asking the carer to clean seems quite an expensive way of doing things as the carers charge about £15 more per hour than a regular cleaner. Also, Dad has turned into a bit of a hoarder and I am not sure how much cleaning someone could actually do around the boxes of stuff everywhere.

Throughout the entire conversation Mum kept calling out “what’s happening?” and “what are you talking about?” so we kept explaining to make sure she felt we were speaking to her rather than about her. Sarah asked Mum if she would consent to someone helping her shower and Mum said yes. This is because she had no idea what Sarah was saying. Sarah then said that it would all be alright as Mum has agreed. In reality I know that, when the carer arrives, mum will go into full refusal mode. Mum then started telling Sarah to “bugger off” and “sod off”. Sarah just laughed, she is obviously used to this sort of behaviour. Before leaving Sarah gave us a directory of carers but many of them are out of our area. We have booked a visit in tomorrow simply to discuss Mum’s needs. Dad got the name of the care agency from Age Concern.

When I was upstairs with Sarah she said “your mum is at the end now”. I must have looked quite shocked at her bluntness because she then said “of her Alzheimers”. The clarification, didn’t really make any difference, it all amounts to the same thing. Poor mum, such an energetic, capable and kind person reduced to this. You would not wish Alzheimers disease on your worst enemy.

Thank you for reading,

Samantha

Cover Photo by Pawel Czerwinski on Unsplash