It is important to point out that the 80's saw the development of the "Care in the Community" concept and the early realities of its introduction and implementation. So what follows needs to be seen in that light as what has happened since then has moved the realities on substantially though not necessarily always for the good.
During all the time of the three attacks, her hospitalization, and when she was to be cared for at home I had to balance her needs, and our daughters needs with my ability to hold down a job to provide us with a continuing 'heads above the water' income. During this period the organization my wife worked for was privatised and the new company tried to cut back on their contract and legal responsibilities to her. I found I needed to remind them of what their legal obligations were and eventually threaten them with a restraining order when they tried to bully her by surprise visits while she was ill at home and I was at work. We eventually managed to get through to an agreement that meant she was retired through ill health. Clearly a sensible decision given her health conditions and inability to return to work, but it had to be fought for and was important as it had vital implications for the financing of her continuing care needs. From the realization that the first attack had meant that for some time she could do little in the house or look after all our daughter's needs, we had some help from Social Services to clean the house, make sure my wife had lunch and get our daughter to and from her nursery placement. We also had the benefit of our daughter being able to go to a specialist "support for families in crisis" nursery. It all worked reasonably well until that third attack. Thankfully I had a very supportive employer who kept me on full pay although during and after the third attack, I could only get in about 50% of normal hours on average, and even then my attendance varied greatly day to day depending on the unfolding crises and the things I needed to do to keep our family world working.
So, when my wife was building up to be able to return home, I had discussions with the neurologist about my wife's clinical condition, what her needs would be as well as talking to the occupational therapist about what could be done to adapt the house to suit those needs. The neurologist, although very supportive, did ask me if I was sure I knew what I was taking on and wondered if I would be able to cope but, seeing I was determined to try, helped greatly by offering advice and setting up meetings with the relevant Social Services and NHS care agencies as well as taking my side in getting them to confirm what they could and could not offer. It was all predicated on the basis of me seeking out and employing a live-in carer who would look after my wife the 12 daytime hours of the day and my daughter when at home, all this for the 5 working days of the week. I was the carer for the other 12 hours of each weekday and all of the weekend. From the other official agencies we received the following. 1. A morning visit from the district nurses 7 days a week to help with getting my wife up, washed and dressed with any health issues monitored and dealt with. 2. An evening visit from the 'twilight' nurses 7 days a week, who got my wife ready for and into bed, again dealing with any health issues. 3. One hour's respite care once a week at the weekend so that I and my daughter could spend that time going out together while my wife was monitored etc. 4. A weeks respite care once a year, though I managed to get three sessions over a period of 10 months, where my wife would go into a local NHS community hospital to be cared for while my daughter and I got away and escaped all issues and stress to do with the caring process. While this planning and organisation was being carried out I had the house adaptations done with the help of a grant from occupational health. This included creating a new toilet and shower room downstairs, knocking a doorway through to the adjacent dining room, which was turned into a bedroom and nursing area. Then there were the loans of equipment, such as a ceiling mounted hoist, specialist bed and air mattress and all the other items necessary for the use of me and the other carers to enable us to give my wife an adequate level care and assistance suited to her disabilities.
Just when she was due home one of the providers had to temporally withdraw their offer, and as they were crucial to the effectiveness of the care each and every day, the return date had to be postponed by several months. By then I had already employed the live in carer and, as that process was very difficult in terms of finding the right person for the job prepared to work the necessary hours with the necessary skills, I kept her on. Until my wife was able to return home the carer went into the hospital to be with her and help them attend to her needs and therapies. It was for example important to give my wife regular and specific exercises and massages to ensure that her limbs did not seize up and try to improve her limited abilities.
But return home she did and for ten months it kind of worked, though that inexorable and gradual decline meant that her abilities and condition continued to be lost. It was very difficult to experience that happen despite the efforts of so many trying to hold it back. It was an extraordinary time for my daughter and I, both witnessing this, dealing with the strange experience of living in a quasi nursing home that was also meant to be our home, and trying to explain to the larger family and friends what was going on and what it meant.
As I said at the start of this post this was the 1980's, late 1980's, when Care in the Community was one of the hot political topics. I obviously got deeply involved in fighting my wife's corner while getting it set up for her. As part of that I brushed up against the campaign seeking adequate funding for the schemes. There was a general feeling that it was not affordable on the declared budget expectations so I decided to try and quantify how much the help I was getting cost. At the risk of being pedantic I will list what is not included in the cost as well as what is. What is included in the cost is: the wages of the live-in carer, the cost to the NHS of the district and twilight nurses daily visits, about an hours visit by two people on each occasion, as well as the three week long respite care stays, and that is all. Perversely the costs of the respite care stays were the lowest cost elements by some way. It does not include the costs of the loan of the equipment, the adaptations to the house, the cost of food etc for the live-in carer, any share of the cost of running the house as a quasi nursing home, or the value of my time as a carer. The annual cost, that I managed determine from nationally published information sources, of those very limited elements of the overall costs was £30,000. An enormous and unsustainable amount when you realise that this was the late 1980's.
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