For Dementia Action Week, Anne from the National Bereavement Service shares her personal experiences of caring for her mum through the advancing stages of dementia.
Early signs of dementia
It wasn’t memory loss that first alerted my sister and I to our mother’s onset of dementia. That’s perhaps not surprising as we lived around 300 miles away, so most contact was by phone once a week.
We knew her routine very well, and in her 80s she had become quite reclusive so there was rarely news for her to share when we spoke. Already shy, a non-life-threatening physical condition made socialising difficult for mum, but she was otherwise remarkably fit. She walked into town regularly for shopping trips and to go to the bank, and she would catch the bus home.
What alerted us, in time to obtain Lasting Powers of Attorney (LPAs) with her full consent, was her diminishing confidence and occasional inappropriate emotional response to issues of concern. There were an anxious few hours getting a repeat prescription at the beginning of a bank holiday weekend because mum had forgotten to get it renewed. This was unusual in itself, but what was more odd was her complete lack of worry.
When mum went into town, even with us, if she didn’t recognise the cashier she would walk out of the branch. She fretted that the LPAs needed to be notified to the solicitor who held her Will, despite my repeated assurances that the two documents were not linked and her knowing that I was knowledgeable on this topic.
No diagnosis
Mum was admitted to hospital after she fell at home which resulted in a broken neck of femur.
While she was in hospital we asked for a care of the elderly/dementia review. We were reassured by the staff that she did not have dementia as she had passed the test. Either they had made too great an allowance for post-anaesthetic confusion or mum was already demonstrating her considerable ability at confabulation. My sister commented when I reported back, “Did they try asking her what she had for lunch or even whether she had had lunch yet?”
Compared to some of the other patients, mum’s disease was not yet advanced. However, mum was always fastidious with her personal hygiene and would never have tolerated faecal material under her fingernails to which she was oblivious when I discovered it and then cleaned her hands properly.
Further signs
I stayed at mum’s flat while she was in hospital and evidence of her deteriorating mental condition became clearer to me.
I found a broken tooth wrapped in tissue in the cutlery drawer. When I asked her about it, she said she thought the dentist might be able to use it. In her bedside cabinet I found a photo of her maternal grandparents and their children. She had long accused me of losing this photo and I had searched for it assiduously. Relief at finding the photo (and confiscating it for safe-keeping) outweighed any irritation. Then there were the cupboards and drawers stuffed with plastic bags and more plastic bags.
Caring for mum after diagnosis
For a few weeks I became mum’s carer. It was clear mum would not be capable of self-caring again because of her lack of capacity. This gave me an invaluable insight into the restricted lifestyle of a full-time carer.
Fortunately, mum’s GP, community matron and a social worker all agreed that mum could not care for herself, and urgent respite care was arranged. Mum grudgingly agreed, no longer having the insight that I could not be a permanent carer sleeping on her (uncomfortable) sofa. My sister and I and the professionals, including the care home staff, all knew that the care home would be mum’s permanent home.
I had once jokingly said that if I saw my mum eat a plate of meat and two veg I would know she had ‘lost the plot’. She had always eaten very healthy but small meals that did not involve cooking. When I described to a friend how I had watched mum enjoy ham, egg and chips followed by tinned peaches and custard, my friend agreed that there was no question about mum’s diagnosis.
Challenges
The care home was good until it was suddenly closed by the owner who had placed too great a demand on the staff in terms of case load and complexity of case mix. There were blatant breaches of GDPR by the owner telling friends we were looking for a new home, and social services were not helpful.
Thankfully, the St John’s Ambulance Service was superb in every respect. They moved mum to a care home we could see from our own house which proved to be ideal for her. They also increased the care as her level of dependency increased.
One of the most difficult aspects of visiting mum, especially in the early days, was meeting other residents with more advanced dementia and knowing this was also our ultimate destination. It was also challenging to explain to mum’s friends that she really was quite confused. In the early days in the care home she could still hold a conversation very well and relate anecdotes that appeared to be coherent. Her friends would only understand after we later explained that mum had knitted together incidents from different times and places including some manufactured by her imagination.
Mum’s 90th birthday
On her 90th birthday mum had one of her occasional ‘I’m staying in bed today’ moods. I knew the staff would bake her a cake, but I asked them not to mention her 90th birthday at all. A friend did send a 90th birthday card which she turned to face the wall (I never told the friend). Her reaction to being told it was her birthday was “humph! Not another one!” She didn’t lose her feisty nature until very near the end of her life.
Mum had always dreaded becoming old and frail. She hadn’t celebrated turning 70 and both before and after developing dementia she would ask to be given rat poison. Personally, I am not a supporter of euthanasia and I have far too much respect for forensic science to have ever felt able to assist her dying. Had she chosen to end her own life, I would have understood (I think) but she was of an age to regard that as morally wrong.
An Admiral nurse explained to me that many patients who think they will take their own lives because of a dementia diagnosis lose the ability to do so by the time they are at the point when they might.
A period of calm
Ironically, the more mum’s disease advanced, the less distressed she appeared to be. Her carers reported she was often cheerful and even agreed to have her nails varnished, which was a first.
We began to feel our visits were perhaps unhelpful. Mum still recognised us, and we felt that this provoked memories of someone else she had been in the past. Then lockdown happened and we knew she would not understand ‘window visits’ so we relied on the staff to keep us up to date.
The end of mum’s life
It is my only criticism of the staff in the care home, that even though they saw mum every day, they failed to notice and then inform us of her dramatic weight loss during lockdown.
The inevitable phone call came, and we were able to visit and spend time with mum. Agreeing that end of life care drugs could be used was straightforward because of those LPAs we had done 3 years before. She died peacefully.
Final reflections for Dementia Action Week
At key moments during mum’s illness, when dealing with health professionals, social services and care staff as well as financial organisations, those LPA forms ensured that professionals were confident that mum had appointed us to act on her behalf. The LPAs were reassurance that mum had been certain we would always act in her best interests.
The administration after mum’s death was straightforward as she had rewritten her Will to reflect her current wishes. She had appointed family members only as executors and removed the name of a solicitor as an executor. This allowed us to avoid unnecessary solicitor’s fees.
My personal experience has convinced me that LPAs are essential documents. I have already created LPAs authorising my sister to act on my behalf should it become necessary, and we have had informal conversations so she knows what I would want. I have also updated my Will, so it reflects my current circumstances. For Dementia Action Week, I encourage you to do the same.
