It’s been some months since I wrote a Demetria Diaries posts, we are still muddling along. My dad has employed a carer from an agency to come in twice a week for my mum. Unfortunately Mum won’t really allow her to do much but Hannah, as the lady is called, does wash her legs and sometimes Mums hair.

Things have deteriorated considerably in the past couple of months. Dad had a corneal graft some years ago and his yearly check up at Kings Hospital in London was approaching. We arranged hospital transport and agreed that, as happens every year, I would sit with Mum while he went to the appointment. When I arrived at my parents house my Dad looked so ill and frail that I couldn’t let him go into London without me so my lovely daughter literally ran round to their house to stay with Mum while I went in the ambulance. Dad has had some stomach trouble lately but a CT scan and blood tests haven’t found a cause for this. The clinicians decided Dad is too frail for a colonoscopy. On this particular day he looked pale and exhausted.

Kings is a huge hospital to navigate and we were kept waiting for hours. The eye clinic receptionist seemed annoyed that we were keeping the return hospital transport waiting and kept asking irritably when we would be finished – as though we had any control over the situation. You would think that the reception staff would take one look at Dad and wonder if it was really reasonable to keep an elderly patient, who had travelled a long way, waiting for hours after their appointment time. I could see Dad was becoming quite anxious about not being able to get home so I was pleased I had gone along with him. I told him we could pay for a taxi if need be. Eventually the consultant saw Dad, said all was well with his eyes and we made our way to the hospital transport hub. We were told nothing was available as it was so now after 6pm but that they would organise a taxi, at no cost to us. While we were waiting a couple from our village came over to say hello, what a coincidence. I didn’t know them but they recognised Dad and asked how he and Mum are getting on. I was hoping they would offer us a lift home but they, like me, didn’t fancy driving in London and had taken the train. Dad was too tired to walk to the station and take a long train journey, it is SO many stops. Eventually our transport, a shiny black Jaguar SUV, arrived and after a slow drive through City traffic we got home. My daughter said my mum had been a bit of a handful but she managed admirably.

Since then Mum has spent most days asleep in her armchair waking only to eat and, if she gets there in time, use the loo. She is always cold, the central heating is permanently on and she is wrapped in a fleece blanket. Mum does not welcome visitors and continually tells anyone other than Dad to go home.

My parents’ lovely next door neighbour died in his care home after a bout of pneumonia, he was ninety four and had advanced Alzheimer’s disease. Dad was very upset by this, Mum oblivious. This mild mannered, gentle man had to go into care after becoming aggressive towards his wife, what a cruel ending for him.

Mum has a nasty eye infection at the moment complete with an enormous stye. Her third infection is as many months, the GP has visited her at home a few times now. She continually says she wants to see her father who died in 1974. She is unsure of who I am. The speed of her decline is accelerating. Despite this, she gets up every day and gets dressed in smart trousers and her usual little T shirt and cotton cardigan. I have seen first hand the enormous physical and mental effort that this takes but my parents are not the sort of people who have ever sat around in their night clothes They just get on with things without complaining. They eat breakfast at a table my dad has laid with a cloth, table mats and cups and saucers. Dad says he sometimes feels he is running a hotel for one. I really admire them both. I think my Mum is still with us because of the devotion and care my Dad has showed her.

Thank you for reading

Samantha

Cover Photo by Pawel Czerwinski on Unsplash

Dad and I looked at the list of care agencies given to us by the visitor from Social Services. Most of them were located more than fifteen miles away. There is a local agency but I did not want to use them because I have seen one of their carers in the local park screaming abuse at somebody. Dad rang Age UK and they recommended some other agencies and we booked an initial meeting with one of these.

Two women arrived from the agency, one manager and a young woman who seemed to be learning the ropes. They arrived at 12pm and Mum would always be up by then but, on this particular day she had gone back to bed after breakfast saying that she felt unwell. Never in my life before have I known Mum to be in bed at midday. Anyway the older manager was very much into cross selling her company’s services. I explained that Dad is not going to pay almost forty pounds an hour for cleaning and she was visibly disappointed. I explained that we were considering booking a couple of initial sessions where the carer would come in and bathe Mum and wash her hair. The manager started pushing for every day. I was glad I had attended because I can see how elderly people can be pressured into agreeing to more of the care agency’s time than they can really afford.

I explained that Mum would usually be up at this time but she was feeling unwell. The manager asked to see her and, again I reiterated that Mum was asleep. “Just let me see her” she said. I took the manager and her colleague upstairs and into Mum and Dad’s bedroom. Mum was lying on her back, fast asleep looking white as a sheet The manager called Mum’s name in a booming voice, scaring her. Mum became very distressed. If I was woken by two strangers in my bedroom I would be terrified, anyone would. I went over and reassured Mum who was overjoyed to see me for once. Then the manager said it is neglectful to leave Mum in bed all day. For the third time I explained that Mum is NEVER in bed all day , I began to feel really annoyed and judged. The manager then said that their carer would wash Mum but wouldn’t be prepared to manoeuvre her into the bath. I said would write to the contact at Social Service and see if we could have a bath chair. This was supposed to have been supplied before. Everything is such hard work.

Despite my misgivings, Dad seemed keen on booking them in so we arranged for two visits the following week. The manager said she had a particularly kind, patient carer in mind. I was working on the day she visited but rang Dad once I had finished, he sound exhausted and exasperated, predictably Mum had refused to be washed. The carer made Mum a cup of tea and left, Dad said she seemed very nice and patient. Later that evening Dad rang me and said mum was crying. I popped round and Mum said her back hurt, I gave her some pain killers and tried to straighten up the cushions on her chair but she wouldn’t let me. She told me to go home and leave her alone. Dad asked me to help with a problem on his computer, we were out of the room five minutes and Mum must have shouted out, demanding dinner, at least fifteen times.

I woke at 4am this morning worrying. Mum is clearly not cleaning herself and she will not allow anyone else to help. What on Earth are we going to do? She could have a bottom covered in sores but we wouldn’t know. What if we need to call an ambulance or doctor out, they will think we have not been looking after her. The same carer is coming again in a couple of days and we will try again but I am not optimistic. I think we are going to have to consider a care home if this refusal continues.

Samantha

Cover Photo by Pawel Czerwinski on Unsplash

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