The hardest decision
Jill Fraser is an author, a trained nurse and co-founder of the healthcare project, Kissing it Better. She lives near Stratford-upon-Avon with her husband, Sam, and their three children. After a year in hospital, following a brain haemorrhage, she moved her mother into a care home.
Mum spent her life dashing round helping others. A tireless fundraiser, she also loved long walks and board games. For many years she organised business lunches at the Savoy hotel. After my dad died, she moved to Stratford and worked as a doctor’s receptionist in a busy GP practice. Sprightly, and in her early 70s, I thought she would continue to enjoy that lifestyle for years.
But all that stopped in December 2009 when she fell on the pavement outside her house and banged her head. A neighbour called an ambulance, contacted us, and we dashed to the hospital. The news was terrible. Following a valve replacement 13 years ago, Mum had been prescribed warfarin, a blood-thinning drug. As a result, the blow to her head had caused a devastating brain haemorrhage.
Within hours Mum had gone from being hugely active to someone who was totally dependent. Lying in a bed unable to speak or move, the injury had left her with symptoms similar to a massive stroke. Tragically, she had become as vulnerable as a tiny baby.
My first instinct was to bundle her up and bring her home. But it wasn’t as easy as that. Mum needed full-time care. She stiffened if anyone went near her, needing two people to move her. if I took her home, I’d need a huge team of carers working in shifts every week. Managing on my own, even for a few hours, would be impossible.
Prior to her fall, we had spoken almost every day and, given half a chance, Mum would chat for hours. But not any more. Now, at best, l think she knows me, not as her daughter, but as someone special – someone who keeps coming to see her and keeps giving her cuddles
Mum spent many weeks in hospital. Knowing that she had always said that she would rather die than be totally dependent, I felt desperate seeing her lying there with her dignity so horribly compromised, knowing that this was the last thing she would have wanted.
I started to look for a nursing home. As she had been living near us since my father had died, it seemed sensible to stay in this area. My sister lives in London, sometimes abroad, and her job doesn’t have the flexibility that mine offers.
The process of finding the right home was our next nightmare. Mum’s disabilities were so great that several places wouldn’t consider her. And the price range for care was staggering. Top fees, in 2011, in our area are £60,000 a year. Mum had some money but, if she lives for years, that’ll soon run out. Despite her multiple needs, she didn’t qualify for any special funding. But we knew she needed a greater level of individual care. But what was best? When the discharge nurse at the hospital told us she wasn’t allowed to recommend anywhere, we felt abandoned.
I tried everywhere to get sensible advice. A friend who worked for Age UK was brilliant. A neighbour whose father had been in a nursing home was also helpful. Eventually, I made a list of priorities. The home needed to be near so that I could visit every day. It needed to offer tender, loving care by the bucket load. I also wanted somewhere that felt intimate, where Mum couldn’t be forgotten (in a corner of a large day room). Above all, I wanted to be sure there was strong, caring leadership.
Eventually, I found a lovely home in the middle of town. It ticked nearly every box and, given mum’s multiple needs, they look after her in an amazingly caring way. For Mum, it has been those little things that have meant the most. My sister and I enlarged favourite photographs and labelled them so that everyone knew something about them. in an A4 frame by her bed, we listed the highlights of Mum’s life – her husband, children, grandchildren, favourite hobbies, jobs and holidays. Staff quickly realised they could talk to Mum simply by using the information around them.
We used mirrors to extend her view. We raised her bed so that she could see out of the window. And an electric kaleidoscope created a light show above her chair. Some of the nurses became interested and soon they were developing our ideas with other residents. Seeing my Mum in a nursing home has been a very soul-searching experience and has given me endless sleepless nights. But, given the circumstances, we had to make the decision that was best for everyone, with Mum as the focus. Perhaps I’m salving my conscience but, having taken heaps of advice (not all of it helpful), I knew I couldn’t manage Mum, a never-ending stream of carers, a husband and children in my own home without imposing enormous levels of extra stress on everyone.
All this came as a terrible shock and, in some ways, perhaps i should have been better prepared. in the 1970s i trained as a nurse. together with a colleague, i have now used some of that knowledge to start a campaign to improve the lives of other vulnerable people like Mum. Kissing it Better is a website full of simple ideas that can make a huge difference to someone’s care.
I try and see Mum every day, with my husband, my children and my sister covering any gaps. it’s a huge commitment, but i feel worse if I don’t go. I feel very protective towards her. Although life has changed, she’s still my mum and I still think it’s a privilege to be with her.
Who knows what the future holds? I try to take each day as it comes. I love my mum and I’ll be devastated when she dies. But, when that time comes, I don’t think she’ll be as sad as me.
My Personal Tips For choosing A care home
Try to turn up unannounced to look round. You get a more accurate picture.
Ask how long the staff have been there. A rapid turnover may not be a good thing. Also, do the staff get regular training?
How often do they use agency nurses? Although many are excellent, they won’t necessarily have detailed knowledge of your relative’s special requirements.
if you like the person in charge ask, discreetly, how long she thinks she willbe staying.
Think about the location. if it’s miles away, are people going to visit as often?
Ask about activities. what are they, and how often do they happen?
Ask everyone and anyone you can for information about the home, including other visitors.
Watch, critically, how staff react to people in their care.
Read any reports that may have been done on the home, but check the date. if the staff has changed since the report, remember that the care may have changed too.