Christmas is coming and my Mother has been enjoying a Christmas Fayre in her residential home, listening to the local school choir carol concert and to spending time with her family and opening presents.
It's a far cry from Christmas 2008 when her life and ours had a much grimmer outlook. My sister and I had spent five years nursing her in her own home and pleading for carers and nurses through the social services . During 2006/7 I managed to get the social services to send an officer to assess her for care .
They bring a big fat booklet of tickbox questions, sit right in front of the elderly person they are assessing and ask, in a demeaning fashion, can you toilet yourself?, can you make a cup of tea?, can you pull up your own nickers and do up your own buttons? If you are compos mentis and have pride as my Mother has, you tell them Yes to every question even though that is not the truth. They don't use their eyes to determine that the grossly swollen legs and feet and walking frame means she can't walk far, that her shaking hands which can barely hold a cup mean she couldn't make a cup of tea or do up her own buttons. They have a limited budget, they are instructed to give as little care as possible, so they encourage the elderly person to tell them how good they are managing on their own, rate them as low in need on the scale as possible and then go away. A few weeks later they write you a letter saying your elderly parent is fit and well, doesn't need care, and they wish you all the best. Budget saved for another year.
From that first abortive bad experience of an assessment I learned that it was necessary for me to be present when a social services officer was doing an assessment, it was necessary for me to express my opinion on my Mother's needs and abilities or lack of them and most importantly to insist that I signed that tick box report they sat , self importantly, putting together, only when I was satisfied the answers reflected the truth of my Mother's situation not their interpretation of it.
But before I arrived at that stark understanding of how to deal with the uncaring adult care social services my Mother made her first attempt at suicide. She was in pain, she was virtually immobile and she wanted to be independent in her own home or she wanted to be dead. I found her collapsed on her bed from an overdose, I called the ambulance, did CPR and got her into hospital . Two days later when she finally came round we sat and hugged and cried and she promised she wouldn't do it again. I told her she had children, grandchildren and great-grandchildren and they all loved her, God wasn't ready, he must still have a purpose for her and that she must wait on him to say when her time was up.
Social Services, called in by the hospital this time to reluctantly do another assessment decided maybe their budget would stretch to putting someone in morning and evening to get her up and put her to bed. In between we two daughters and her elderly brother were in and out every day, cooking meals, toiletting, washing, cleaning and trying to cheer her up, mostly to no avail. I spent endless hours trying to persuade her into a wheelchair I had bought, just to get her out of the house for a walk or perhaps to the nearby library or chapel but her depression and agoraphobia had become so deep , getting her to even eat was becoming difficult, to leave the house was impossible.
I didn't see suicide attempt no,2 coming but I should have done. I didn't find her, a carer did, and she was already in hospital by the time I heard about it. Did it force me to listen to the arguments for and against euthanasia? Yes. I'm still against it. I can't see how it can be right to take a life when that life can still be useful and valuable. Again we hugged and we cried and she promised yet again that she wouldn't make another attempt at suicide.
The 2nd suicide attempt prompted the social services after much agonising and worrying about their budgets to put in an additional nurse in the mornings and a carer three times a day. Mum called them back and told them she had rethought her situation and wanted to go into residential care. More endless tick boxes manipulated to give as little care as possible, another letter saying despite her virtual immobility she didn't qualify for residential care. Privately the officer told me they were keeping as many people as possible out of residential care, they simply hadn't got the money. Truth is of course they were paying over the top salaries and expenses to too many executive councillors and senior pen pushers; frontline care was not a priority and still isn't!
As best I could, whilst looking after the needs of the rest of my family, I virtually camped on her doorstep. I'd gone home for a couple of hours one afternoon to cook a late tea knowing her carer would be in to settle her into bed, when the inevitable happened and we ended up with suicide attempt no.3. The carer called me in a panic finding the house in darkness. I instinctively knew what had happened. And there she was again collapsed and unconscious on her bed. When I stood by her bed rubbing her cold hand through my shaking fingers I ran the euthanasia arguments, she had spoken of many times, through my mind, Should I call the ambulance or should I sit by her bed through the night and let her slip away? I've no idea whether I was right or wrong, but this was my Mother and I knew if I did that it would leave a scar on my soul I couldn't live with. I called the ambulance and started CPR under instructions from the emergency operator.
After this attempt, they put Mum, despite the fact that she was in her nineties, into the psychiatric ward at the hospital . She was there from October and through Xmas. They were the grimmest days of my life and hers I suspect. Back came the social services and their endless soulless assessments that refused to offer any useful help.
But one thing had changed. Me. My Mum had been to hell and back. She was still with us by some miracle. That Christmas she asked me to buy her, for a Christmas present, a trip to the Digitas Clinic in Switzerland. I wanted her in caring residential care and that was what I was going to get her. I just didn't know, during those dark bleak days of winter, how to do it.
In early January with Mum still incarcerated in a psychiatric unit and saying only that she wanted to stay there until she died, my sisters and I went into a meeting with an adult social services officer desperate for a solution. He wanted to put her into an apartment block, three floors up, where carers would be in a ground floor office on site and on bell call 24 hours a day. We had found a brand new residential home, cosy and comfortable, with 24 hour carers and nursing care and close to her old home and we wanted her there.
It was the endless argument over money not needs, again, of course. Except now , having researched, I had an ace up my sleeve. I had been and inspected the apartment he talked about. It had lovely wide opening windows out of which my mother could and would have hurled herself at the first opportunity.
'Did the adult social services' I asked ' have a Duty of Care to protect my mother from her suicidal tendencies and which her consultant had assured me she would be confirming to them in writing? And as a consequence did they have a legal responsibility to ensure that she was housed in a safe place with proper 24 hour care?'
He halted in the middle of ticking his endless boxes and his face fell. And as easy as that our case was won and Mum had her place in a residential home where we knew she would be safe and well,
It was only half the battle of course as Mother hated it to start with. But gradually she came out of her shell, started having a regular hairdresser and let them manicure her nails. She made friends and started to enjoy some of the entertainments that come and go. When she roused herself to tell the chef how to make proper gravy and decent custard and then to advise the visiting vicar that they wanted their old hymns not his choice of modern one's I knew we'd turned the corner!
A few weeks ago I took her out, with the aid of a wheelchair taxi, Christmas shopping. The first time she'd been out around the shops in more than ten years. She's developed a passion for new clothes and I've promised we'll go back around the sales when weather permits.
But for me the best moments have come this week. Her grandchildren and great children are visiting her in twos and threes (more than that and she gets too tired). She cried when she told me Monday that a great-grandson visiting Sunday looked just like her grandson who had died young and how pleased she was when he talked about his university plans for the future. We laughed at the antics of her two small american great- grandsons with their broad accents and boisterous behavior who've flown in from Washington DC especially to see her. And yesterday as we sat by the blue and silver Christmas tree and talked about Mum's previous despair about her great grand-daughter YoungNell's medical problems she actually grinned at YoungNell's own tomboy plans for the future; her love of yachting and kayaking and hopes of becoming a marine biologist or some such thing.
Mum is finally at ease in her mind. She is interested in and enjoying her large and thriving family growing around her. She has become a true Matriarch , not sure I'll ever attain such status! Life, good and bad, is going to continue through her family for a very long time and hopefully she'll be around for more Christmas's to chart their ups and downs.
For us the question of euthanasia remains. Were we right or were we wrong to deny her the right to end her life? For us, as a family, I think, enjoying this Christmas season together as we all are, it was the right decision. And it is always about a family and not just one individual. But others will think differently no doubt.
Merry Christmas Folks! Best Wishes for 2012!
