It is March and Mum’s cognitive health has deteriorated noticeably since Christmas. Dad has lost a lot of weight and is limping, he has always had problematic feet, probably because he wore ill-fitting shoes as a child. The podiatrist comes and visits him at home, it is an expensive service, almost one hundred pounds a time. The NHS do not appear to offer home visits for podiatry. Dad doesn’t have any time to himself at all. I keep offering to come and sit with Mum so that he can perhaps go to an art class or simply walk up to the village and have a quiet coffee but he won’t go anywhere without Mum. He still buys her flowers every single week.

Apart from a hospital appointment which I took them to, I don’t think my parents have left the house in three months. Mum was always someone who had to be out doing something every day. Now she just sits in her arm chair calling Dad’s name if he is out of her sight for more than a few seconds. Apparently it is common for dementia sufferers to experience anxiety if their main carer is out of sight. The washing machine is permanently on, Mum now generates more washing than my family of five. She isn’t bathing or washing her hair and it is obvious that she needs assistance with her personal hygiene. I ask on our local Facebook group for recommendations of carers and a couple of people privately message me, one someone who was another mother at my son’s school. She tells me she can hardly believe Mum’s dementia situation is dragging on so long. Her own father died of Alzheimer’s disease some years ago and he had a wonderful carer, she shares the details. I tell Dad I think it is time we insist on having a carer visit at least a couple of times a week. I can see he is reluctant. I reassure him that I have a name of a woman who comes highly recommended. Dad decides to ignore this and simply does a Google search and books a visit from a company I have never heard of. Dad says they must be alright, they have a website! I am slightly irritated by this.

My husband tells me that Tower Hamlets Council coordinate all his mother’s care and that he doesn’t understand why I am not going down that route. They have providers they use and they invoice my mother-in-law monthly. He said that, once my parents are on Social Services radar, they will be obligated to help and that he has been stunned by the amount of assistance and attention that his own mother receives. I decide to apply for a care assessment to see what the council say about providing or arranging some care for my parents. Dad and I fill in the form online and wait to hear. We cancel the visit from the mystery care company.

The assessment is supposedly arranged for 11am on a Monday morning. I feel it is crucial that I attend and book the time off work. Whoever is supposed to be coming doesn’t turn up. It would be most unlike Dad to make a mistake about an appointment but I am not convinced that whoever he was expecting was actually coming about the assessment. After being on hold for half an hour, Dad gets through to the correct department and they tell him that there is nothing in their diary and we won’t be hearing anything about the assessment for some weeks. The person we speaks to thinks it may have been one of the charities that the council liaises with that were due to visit but they aren’t sure. Dad only has the first name of the expected visitor and no direct contact details for them but he is certain they are from one of the council older-people departments. While all of this is going on Mum is becoming more and more agitated. She suddenly blurts out “I don’t want to go into an old people’s home”. I am stunned. Dad and I have never discussed this, even privately but Mum has probably heard the phrase “Social Services” and, even in her confused state, realised that something is afoot. We had explained to her earlier about the purpose of the visit and, as was to be expected, she had denied the need for any help. Dad and I try to reassure Mum that was aren’t making arrangements to put her in a care home but she tells me she doesn’t care about me and that she wants me to go home. I have to get back to work anyway so leave feeling sad, guilty and annoyed at a wasted morning.

So, we are no further on. My husband says that his mum’s health has improved no end since she has had her carers. They come in four times a day, every day. Meanwhile, Dad and I struggle on with no help which is just how my parents seem to want things.

Thank you for reading,

Samantha

Cover Photo by Pawel Czerwinski on Unsplash