In my last post I described the nature of the health issues my wife was challenged with and the way we tried to deal with the consequences to support her. From that I hope you got a bit of a feel of what it was like for our very young daughter and I to experience and cope with. Those 10 months when my wife was nursed at home, in a quasi nursing home style, were a tremendous challenge for both my daughter and I to live with as the house felt nothing like our home. There seemed to be no privacy or private life, and on occasion when I returned to the house from work, shopping or collecting my daughter from nursery, I was challenged by newly arrived nurses or care staff as to who I was and what I was doing there.
Sadly, as my wife's condition continued to slowly decline despite all the care and support she received, I realised I had to substantially up the level of support she received. The problem was that the care was supporting her but was not and could not tackle the root cause, MS, the disease was essentially eating away at her nervous system and destroying her already badly compromised capabilities. It was clear that she was in need of more specialised care to deal with her declining abilities and guard against and deal with consequential risks from infections, sores, lack of body tone, ability to maintain healthy body posture, etc. In other words she needed round the clock skilled care to be on hand for the inevitable crises that would spring from the risks outlined above. That meant qualified nurses specifically skilled in dealing with such diseases in highly dependant people. Apart from the complexity and cost of setting up such a care system in our house I was horrified that it would mean that I, but especially my daughter, would be living in a place where her needs came a very poor and distant second to my wife's.
By this stage my daughter was nearly five and after some guilt ridden considerations I decided we had to call a halt to my wife's care at home. By this time my wife's ability to understand what was going on, think about the pros and cons of any question, and hence make any carefully considered decisions had passed. Never the less, and although by then I had obtained Power of Attorney to deal with her financial and legal needs, I explained, I hope clearly, to her what the situation was, what I was thinking of doing on her behalf and why and asked her if she agreed. She indicated that she agreed/accepted that decision, but did not seem to show any response that I could say demonstrated whether she thought the decision was good, bad or indifferent to her. The realization of this seeming disconnect of hers with what had and was happening to her was one of the most startling, humbling and depressing reactions I had to it all, as I knew so well how much she had hated the potential of what was now happening to her with absolutely no hope of escape.
So I talked to the family doctor, the neurologist and Social Services and it was agreed she would be admitted to hospital while a suitable nursing home was found. It needed to be one that understood the needs of the person in relation to the sort of disease, and be able to cope with someone already highly dependant and going to get more so. I was surprised to find that such places are very few and far between also that the ways of gaining admission, and the idiosyncrasies of waiting list procedures and qualification criteria, meant that it was nearly a year before a vacant bed in the right sort of place at the right time became available and known to us. During that time I found that despite all the complexities of understanding the needs of my wife and the skill needed to match that to the potential nursing home, I was the only one who was permitted to handle that. It was solely my responsibility, as Social Services and the NHS staff were not allowed to express opinions. A daunting and truly challenging responsibility.
The potential resident had also to go through a detailed selection and assessment period in the nursing home providing that they had passed an initial check as meeting the basic criteria. This happened three times; one where she stayed for a week but was deemed not to fit in; another when by the time she had been there the trial week and they had accepted she was suitable, the vacancy had gone; but finally fully, successfully and thankfully in an ideal nursing home specialising in people with severe neurological disorders. Sadly it was some 50 miles away thus making frequent visiting difficult. But even then bureaucratic difficulties got in the way because there were two ambulance services involved and I was told they were not allowed to go into each others territories and she would have to be transferred between ambulances part way through the journey. We managed to shame them into ignoring that rule.
Of course there was the issue of money, the cost of my wife's stay in the nursing home was going to be substantial and certainly more than we could afford despite money from her benefits, income from her savings, and her health insurance. Remember I said that the chance accident, meeting and granting of back dated health insurance was going to play a substantial part later on. The money equation would just have been impossible to balance without that substantial contribution. Eventually an arrangement was arrived at whereby the NHS and Social Services agreed to add some top-up monies to the pot. They were pragmatically required to do that to move her on from the hospitals responsibility. I of course had to sign over to the nursing home all the benefits and their control. I did need to go a tribunal to get a judgement to stop the authorities counting all my income and savings as my wife's monies. Clearly I and my daughter needed money to live on and the tribunal upheld my decision to divide our joint savings exactly in half at the date my wife left the house at the end of the home care period. In another way it just reinforced the realities of the effective end of our marriage, its intellectual, companionship and financial interdependency. She was still formally and legally my wife but now her care and world was entirely in the hands and control of others and I was just a visitor.
Despite this I did still have one truly intimidating responsibility for her the decision of life or death, in other words each time there was a crisis, like life threatening infections, I was asked whether it should be treated or not, but that is a different story.
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