Caring for the Elderly Part 17
My Mother moved into a care home on April 7th this year. Her health was already very poor due to her age (91). She was bed bound, partially sighted, suffering from increasing hearing loss and unable to feed herself. Rapid onset dementia meant that her behaviour had become erratic and she was a danger to herself. Hence her caring needs could no longer be safely managed within a home environment. Fortunately the care home proved a good choice. For the past four months they have provided outstanding care and have treated my Mother with dignity, respect and genuine kindness. Sadly, during that time my Mother had several bouts of illness that saw her hospitalised four times. Eventually a PEACE plan (Proactive Elderly Advanced Care) was set up allowing treatment to be managed by the care home and local GP. Since July my Mother has enjoyed a stable environment and continuity of care.
My Mother and Sister circa 1965
My Mother moved into a care home on April 7th this year. Her health was already very poor due to her age (91). She was bed bound, partially sighted, suffering from increasing hearing loss and unable to feed herself. Rapid onset dementia meant that her behaviour had become erratic and she was a danger to herself. Hence her caring needs could no longer be safely managed within a home environment. Fortunately the care home proved a good choice. For the past four months they have provided outstanding care and have treated my Mother with dignity, respect and genuine kindness. Sadly, during that time my Mother had several bouts of illness that saw her hospitalised four times. Eventually a PEACE plan (Proactive Elderly Advanced Care) was set up allowing treatment to be managed by the care home and local GP. Since July my Mother has enjoyed a stable environment and continuity of care.
This Thursday I was notified by staff at the care home that my Mother’s health was declining rapidly and that she was not expected to survive the week. I went to visit her and found that she had lost even more weight and was very gaunt. She was not aware of my presence and was focusing all her efforts on breathing. It is a sobering experience to see a parent who was once so indefatigable and energetic, reduced to such a frail and pitiable state. But such is the nature of life and old age is often a process of numerous minor ailments slowly wearing one down. So I sat and held her hand and talked about “the good old days”. I recounted anecdotes from my youth such as how I set fire to the kitchen curtains as a child. I reminisced about the garden which was her pride and joy for many years. And I recalled the family cat, Sam, who she doted upon. I told her I loved her, that she was a great Mum and I appreciated all that she had done for my Sister and I. Our childhood was fun and our family home was filled with laughter. I like to think she heard and understood all this.
Last night, I received a phone call from the care home that my Mother had died, peacefully in her sleep. It was far from a bolt out of the blue. She was approaching 92 and has been struggling with very serious health issues for the last eight months. Death has been a factor in her life for the last decade as she outlived friends and relatives. Last year my Mother asked me to get in touch with the family solicitors so she could “get her affairs in order”. Hence there has been an irresistible inevitability to this week’s events. Yet no matter how much you try to prepare and reconcile yourself to the situation, when it arrives it hits you hard. My Mother, a constant in the last 54 years of my life, is no more. Part of me thinks this is unfair, but then I stop and think about the quality of her life in recent months and what she’s had to endure. To deny her “rest” would be wrong.
For the present, I must set aside my feelings and concentrate on the task in hand. I administered my late Father’s estate in late 2020 and early 2021 so I have a good idea of what administrative tasks lie ahead. I am somewhat relieved that my Mother decided to get a lot of her personal affairs in order last year, hopefully ensuring a smooth passage through the potentially choppy waters of probate. Then there’s the funeral to arrange and the rather sad fact that few people will attend because so many of my Mother’s family and friends have already died. This is the reality of an ageing society. Thinking ahead, I also suspect that this will be the final entry in this series of posts. Looking back over the last 16 instalments, I hope that my experiences are of use to those who are just embarking upon a similar journey. Remember, 3 in 5 people in the UK will become carers at some point during their lives. You’re therefore never alone.
Caring for the Elderly Part 16
Last December, my 91 year old Mother suffered a rapid mental decline and was hospitalised. We have subsequently learned that this is potentially due to another stroke. Whatever the exact medical reasons, my Mother has been left bed bound, unable to feed herself and in a state of mental confusion and distress. When she was discharged home in mid January it quickly became clear that the four care visits that were scheduled each day were not sufficient for her needs, despite the staff doing their best and my Sister and I providing additional support. Matters were further compounded by personal ill health and other external factors. My Sister has worked from home for the last two years but has now started a staged return to the office. As we felt would no longer be able to cope we turned to both Social Services and the local Mental health Team for any assistance that they could provide.
Last December, my 91 year old Mother suffered a rapid mental decline and was hospitalised. We have subsequently learned that this is potentially due to another stroke. Whatever the exact medical reasons, my Mother has been left bed bound, unable to feed herself and in a state of mental confusion and distress. When she was discharged home in mid January it quickly became clear that the four care visits that were scheduled each day were not sufficient for her needs, despite the staff doing their best and my Sister and I providing additional support. Matters were further compounded by personal ill health and other external factors. My Sister has worked from home for the last two years but has now started a staged return to the office. As we felt would no longer be able to cope we turned to both Social Services and the local Mental health Team for any assistance that they could provide.
Both sent staff promptly to visit my Mother in February and assess her needs. The consensus was that a Nursing Home placement would be the best solution. This immediately raised the issue of funding. Fees in the London area are on average about £1000 per week, although they’re lower elsewhere in the UK. If you cannot afford these, you can seek financial assistance via the Local Authority/Borough Council but the criteria is very strict and there is a shortage of available places. Simply put, due to budgetary constraints the Local Authority prefers that people are cared for at home. However, my Mother’s Social Worker suggested applying for NHS Continuing Healthcare. If a patient has specific healthcare issues that require a high degree of support or that are rapidly changing, then NHS funding can be provided. It is in many ways one of the “best kept secrets” of the UK healthcare systems, as so few people seem to be aware of it.
To cut a very long and complex story short, I completed a substantial amount of paperwork and supplied a lot of medical evidence for my Mother’s claim. I attended a three hour meeting via Microsoft Teams in early March to be told at the end that the recommendation going forward was that she wasn’t eligible. As a result, I then focused on a back up plan of taking equity out of my Mother’s home to fund her care. I was therefore very surprised to be told two weeks later that the panel making the final decision had reversed the recommendation and had awarded my Mother full NHS Continuing Care funding. This included the care that was being provided at home as well as a future Nursing Home placement. By the end of March we were contacted by the local NHS CHC team regarding vacancies at suitable homes in the area. Three places were discussed and within a week a room became available in a home that specialises in dementia care.
I am fully aware that my family has been extremely fortunate in our dealings with Social Services, the NHS and in navigating the bureaucracy arising from Adult Social Care. In four months we have made a great deal of progress. I’ve read a lot of forums and subreddits where carers share their experiences in looking after family members and one of the most commonest themes is the slow speed at which the administrative wheels turn. At the beginning of April I met with the manager of the care home that was offering my Mother a place. My Sister and I were also given a comprehensive visit of the premises, which was not a stage managed tour but a very clear insight into the daily life there. We were even shown around the laundry and kitchens. Based upon what we had seen and discussed, as well as the online reports from the Care Quality Commission regarding the home, my Sister and I decided to accept the placement and my Mother moved in on April 7th.
My Mother is often at her most lucid after her midday meal. I took the opportunity to try and explain the situation to her a few days prior to her move. She does not have “capacity” to use medical terminology but I felt obliged to try and explain such a major change to her life. I think she broadly understood that care in her own home was no longer the best option. Her attention wandered after 5 minutes or so but I felt compelled to discuss the matter with her. Perhaps it had more to do with me and the need to come to terms with my actions. I know I’ve made the right choice with regard to my Mother’s care but placing a loved one in a home is a major decision. However, I now think I have reconciled myself to the fact that I am no longer directly responsible for my Mother’s daily wellbeing. The baton has been passed to others and I need to trust them and allow them to do their job.
Update: Life is filled with change and is seldom static. I wrote the bulk of this post the day after my Mother went into care. She spent two and a half days there before becoming ill. On Sunday 10th of April she was taken to hospital and admitted with pneumonia and sepsis. She was given 24 hours to live. The hospital Chaplain sat with her that evening. Amazingly she slowly recovered over the next 12 days and was discharged on April 21st. Due to strict COVID-19 regulations I was not able to visit her in hospital and so I was looking forward to seeing her when she returned to the care home. Fate has intervened once again, as I was informed on April 22nd that she has now tested positive for COVID. She’s not going back to hospital but remains in poor health and is currently having difficulty swallowing. I suspect that she may not bounce back a second time. However, she is being very well cared for.