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

It’s a beautiful sunny Sunday in early March and I really should be in the garden doing some tidying up but my morning visit to my parents has drained me of energy . Mum is becoming more and more obstinate, she says no to anything that could help her. She does not have the capacity to reason anymore so there is no discussion, it’s her way or the highway. If Dad or I try to insist then there will be a tantrum. Even at eighty-nine, Mum can be quite intimidating. It has got to the point where I walk up their garden path with a sense of trepidation and anxiety.

This morning it was apparent that Mum was in desperate need of a hairwash. I always do it over the kitchen sink, it takes ten minutes, if that. Mum’s forehead, and behind her ears are covered in orange, waxy scales. Mum says no way is she having her hair washed and that I should mind my own business and go home. Dad tries to reason with her but she refuses to move out of the chair. Eventually I manage to persuade her over to the sink and very gently clean her scalp and face but afterwards she sits pretending to cry which makes me feel terrible. She pretends to cry on every visit now, it’s an unwelcome new development. She tells my lovely dad is is a horrible husband and that I should go home and not come back. In my last Dementia Diaries post I was optimistic about Dad accepting some professional help but here we are, still muddling along by ourselves. I have filled out a Social Services form online requesting an assessment but have heard nothing back.

The Occupational Therapist has delivered a shiny new walking frame to my parents’ house. It must have cost hundreds of pounds. It has brakes and a little shopping basket attached. It can also be used as a seat. Mum just spends her days sitting in the armchair now but, in the past, has always enjoyed getting out. She should be able to manage a very short walk and it will do her good to get the blood circulating, particularly in her perpetually swollen legs. I suggest that we go out for a little walk around their pretty cul-de-sac. Again I am met with refusal “I am not using that” she says. End of conversation. I try to press the matter but she pretends to go to sleep. I see her peering out of one eye to see if I’m still there, if it weren’t so infuriating it would almost be sit-com worthy. So it will be another day where my Dad won’t see anyone. The walking frame is now in their utility room, tea towels draped over it, what a waste of resources.

This week I was upset to read about the tragic deaths of actor Gene Hackman and his wife, Betsy Arakawa. Betsy, aged sixty five, was carer to Hackman who was ninety five and had advanced Alzheimer’s disease. Betsy had died from an infection associated with rodents and Hackman died of natural causes a week later. As is always the case now, the internet was immediately awash with conspiracy theories about the “mysterious” deaths. There was actually nothing mysterious as all, just desperately sad. It would seem that Hackman possibly did not comprehend that his wife was dead and was alone in their house for a week afterwards until he passed away himself. Even if he had understood he probably did not have the cognitive ability to summon help. I am surprised this scenario doesn’t play out more often, or perhaps it does but we only hear about it when it affects famous people. If my dad died my mum wouldn’t be able to use the phone and she would probably forget what had happened within a couple of minutes. She would not be able to prepare even the simplest meal for herself. I check in with my parents every day and, if they don’t answer the phone, I drive to their house. Fortunately they live very close to me. My dad has an emergency alert pendant, he has had one heart attack. God forbid he has another then I hope he could press the button and get help. My mum certainly couldn’t dial 999 now.

There was a lot of judgement about Gene Hackman and Betsy Arakawa’s deaths. Where were their three adult children, why didn’t they have a housekeeper, caregivers etc. The fact is some people become very reclusive when they grow older and refuse to accept any help from outsiders, even family. They don’t want to admit the full extent of what is going on, they tell themselves they can cope. In the Hackman family’s case, they probably didn’t expect a sixty five year old woman to suddenly pass away. Not every family is close but somebody needs to take responsibility for checking in every day.

So, an unsuccessful and upsetting visit to my parents house. I am hoping that social services will respond to my request for an assessment and that they will insist on someone coming in regularly to wash Mum. Someone who is used to dealing with refusal , tears and tantrums. On my walk home I bump into their lovely, sprightly neighbour whose husband went into a care home with Alzheimer’s a year or so ago. He is very happy there apparently and his ninety year old wife looks so much better for having passed the burden onto the professionals. She told me she wasn’t getting more than three hours sleep a night before and that she had lost two stone which she is now slowly regaining. I hope my dad will consider care for my mum if she gets any worse because we can’t struggle on like this.

Thank you for reading,

Samantha

Cover Photo by Pawel Czerwinski on Unsplash