Today Anita had some plastic surgery on her face. It has involved several incisions in places that will be hidden, by her ear, inside and outside her mouth. The operation has helped her have a more balanced face and her speech has improved markedly.
This week Anita refused an operation on her back. She was due to have a biopsy taken from her back to determine if she has an infection. She says she doesn’t want the operation because she is afraid of becoming paralysed. After what she has been through I can understand her refusal. Maybe the op hasn’t really been explained to her. She doesn’t think her back problems are down to infection, she says it’s a problem in the alignment with her disks. She reckons that she’s been tested for infection before and that her records haven’t been looked at.
Anita was under the anesthetic yet again as she added to her massive tally of operations. She had surgery to center her eye in its socket. Fortunately she was in better spirits than she had been recently. The old ups and downs are still happening. She always faces operations with bravery and it’s usually me who does the worrying. The operation seemed to go OK and we’ll wait and see how straight they have managed to get it. The surgeon said he would get it as straight as he could. There was more of a risk because she has had squint surgery in the past.
Physically Anita is making very good progress from her poor state post Christmas. It’s probably the most rapid improvements that I have seen her make in rehab and is testament to the good help she is getting. She now only requires one carer and is able to assist more and more in her transfers. Her back pain has also diminished greatly. Her mental attitude though at times is just like before Christmas, and not being used to it, I still find it difficult. I have not got to let myself be drawn into her down days, I can’t be responsible for making her happy or her life. To be honest I have some selfishness towards my own life and can only be there offering support and balance. At times there is just a small chink of light that she could see things differently. If I sound negative it is a reflection of how best I handle the situation, not to be emotionally swung too much about her overall state.
There was a meeting today to discuss Anita’s progress and treatment. The back pain is still a problem; it’s hard to tell for certain what it is and it can hinder what she can do in physio. I attended a physio session, she did very well but the twisting required for her to rise to sitting caused a period of agony afterwards. She may have an X-ray on her spine to see if there is something wrong. It is getting better but it is still very slow progress. The heat pad often helps although it causes her skin to flush red.
Her sleep is more settled and consistent care is helping develop more trust with her carers. Her lack of trust has caused her to be much less positive in her movements. She is probably past the emergency immediate psychological requirements and has become more settled. Anita was asked what treatment options help and she agreed that the weighting on psychological help, backed by the physio was the correct balance. Ultimately she needs to find more meaning to her life but she is getting more to the point of making decisions. The hospital she is in can offer the best treatment possible on this basis. Our local council will ultimately decide the financial side of things, they may prefer to move her to Oxford.
She has become more motivated for activities and particularly enjoys swimming every week. Getting up in the morning is becoming easier. While she is in an open environment they would like to try her in an electric wheelchair.
Yesterday was Anita’s Birthday, when I arrived they were still getting her ready and for the first hour she was contorted in pain. She needs to get up and into the armchair because that seems to settle the pain in her leg. She has a plastic ball with spikes on that the physio has given her, she rolls it under her foot to keep the leg moving. She was still in good spirits and enjoyed her presents and a stack of cards. Thanks to everyone for these, I appreciate that Anita is always in peoples minds. The staff at the hospital not only had a present for her but brought out a wonderful chocolate birthday cake. I had my doubts at first but the pain eased and we went out shopping and managed to watch a film we had wanted to watch for ages ‘Walk the line’. She didn’t end up screaming in the cinema and a good time was had by all.
For some reason I have found it more upsetting seeing her recently. Maybe because it’s Valentine day and it brings back all the memories. She is drugged to drowsy, sweating profusely from her kidney infection, drooling and still has pain. I am very impressed and emotional that she has made me two valentine’s cards, one of them is from the cat. Neither of us can cry anymore so we don’t embarrass ourselves. The other day she made some scones and she was swimming yesterday. When slightly down I dread getting depressed, because I feel it could all fall apart so easily. The mystery of life so far has told me that we are all sailing more closely to the wind, mentally, than we think we are. It’s a good job I am an eternal optimist!
Anita tells me
We are all in the gutter, but some of us are looking at the stars.
Oscar Wilde
Today I feel flat but there is usually a tomorrow.
Friday night and Sunday, Anita was in the best mood I have seen her for months. She still has alot of back pain but at least the situation is improving. She also has to get over a kidney infection that isn’t helping the situation. They have increased her anti-depressant medication, maybe it’s helped.
I believe very much in fate, coincidence doesn’t even come close to explaining many things that happen in life. It’s all mapped out and you can’t avoid it. For example you see people or things when the odds are against it yet there are times when you expect to bump in to others and it never happens. If only you could just let go and have faith it will all unfold as it should.
The Way has no true shape,
And therefore none can control it.
If a ruler could control the Way
All things would follow
In harmony with his desire,
And sweet rain would fall,
Effortlessly slaking every thirst.The Way is shaped by use,
But then the shape is lost.
Do not hold fast to shapes
But let sensation flow into the world
As a river courses down to the sea.
Tao De Jing
Anita is worried that she isn’t able to take advantage of the physio on offer in the hospital because of the extreme back pain she is in. There is a possibility they may let her go in a swimming pool soon, it’s something she wanted to do for a long time but no one could arrange it in the past. It’s a lovely place she is in, with very nice staff and excellent food. We had a nice walk around the grounds on Sunday, I pushed her to a garden centre but she was still in a lot of pain so an hour was enough. Sometimes when I see her she is very drowsy, it’s down to the drugs she is taking. It’s another form of immobilisation along with the pain and the bed rest that has affected her mobility. Because the place is psychiatrically focused there is always the possibility of a transfer to a rehab unit.
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As I arrive tonight she is being spoon fed, she doesn’t want to move even her arms. Her head is rocking from side to side as she produces silent screams of agony. She has incredible pain in her back and legs and I am starting to wonder what is causing it. She asks me to help her die constantly and talks of how little she has to live for. She says I shouldn’t visit her and that one way or another she will die before too long. I say that I can’t help but at least I can be around and share a tiny part of her suffering. It concerns me that I have the necessary detachment to handle all of this, how far has it all pushed me. How can I remain so calm in the face of seeing someone I love in contorted in agony?
I think that in the space of a short time, the psychiatric staff here has got a really good grasp of what Anita is about. Although listening to her one could be forgiven for giving up completely, I try not to let any emotional ups and downs come into it. I am taking a step back and adopting a wait and see philosophy. It’s not possible to judge what she really wants until some things improve for her and I think there are avenues that can still be pursued. It would be easy for me to think right now, seeing her in so much pain only of the hell she is in.
She is an incredibly difficult case but nobody wants to give up yet. The staff here has gained my confidence by what has been said. The difficulty is that there are so many factors to balance plus even after all options are explored she may still wish to die. The terrible back pain she has right now, must be eased, but yet balanced with the urgent need to get her mobile. Her mobility and mood are interconnected and there is probably no one place that can deal with all the issues expertly all of the time. She is on various drugs and has been started on an antidepressant called Anatriptoline (25mg) which can have side effects. Whatever the case the only way forward is the same as rehab but this time all psychological avenues need to be pursued as well. She needs to be improved to the point that she can at least see the options clearly. For me I can’t afford to have any hopes or fears for the future, what will happen will happen. I just wish she could feel the joy for life that I do!
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