My wife is dying – easy to see now with hindsight, but at the time, the penny hasn’t dropped – there’s always hope. I am now a full-time carer which cuts out volunteering and regular blogging. In the early part of the year it can sometimes mean 3 hospital visits a week with a couple of parking tickets to make things even worse. Proving that Local Council Parking Departments can be kind, I am let off two of them (one in each council) as they are related to hospital appointments, but no relief next time.
For weeks we have been looking forward to another heart valve replacement and the tests look good, showing that the heart is still strong enough to benefit from a new valve. Results are passed on to the surgery team who draw a different conclusion – the operation is too risky and she would probably die in theatre. This means “managing the symptoms” where the most noticeable one is a build up of abdominal fluid.
Blood tests & extra units of blood keep up the haemoglobin level & slightly ease the strain on the heart, and we are having a chat with one professor who helped with the heart valve replacement in 2011. With no surgery cure now, things are getting very serious and “we recommend that you talk to a hospice.” Did I hear you correctly? Yes I did say, hospice rather than hospital. They will be in touch we are told, and a lady from North London Hospice comes round two weeks later.
The cocktail of drugs being administered changes regularly and after a couple of months, Wafarin is stopped as her hair is falling out. This drug is administered where people have had heart surgery to reduce the risk of blood clots, but is notorious for its side effects – especially when other medication is being taken. Sometimes it all gets too much and I am choking with emotion when talking to her. This earns a firm rebuke “I want no tears from you. I need you to be strong for me!” although I am pleased that she has the strength for this.
Oxygen is finally delivered for use at home where she can use this for occasional breathless episodes and a wheelchair is delivered. They want us in the hospice to improve the “pain management”. On a second visit, the lady from the hospice asks if Cathy is willing to come in, as pain management cannot be done as an outpatient. “I’ll try anything” she says as the left arm has been painful for weeks. Next morning we turn up and two volunteers are expecting us who show us to the room which has been made ready. In contrast to previous hospital visits where the Bed Manager has had to keep us waiting for up to two days until a bed in the ward became available, plenty of rooms seem empty. A small detail strikes me – the room numbers are written “FIFTEEN, SIXTEEN” etc. rather than using numerals 15, 16?
The atmosphere is very relaxed and the place is peaceful. During the day you can hear children in the playground next door and there is a pretty garden out the back. In the afternoon, we hear singing and a member of the staff is playing the piano. Cathy loves piano and really enjoyed her lesson the previous Sunday. Could she have her next lesson at the hospice? No problem and would you like us to leave the keyboard in her room so she can practise? Sadly, this never occurs.
This is the Plan
Next morning, a delegation of doctors and nurses are there and we go through the medical history. The explanation of what they want to do includes a short talk on the four kinds of pain receptors and the different medicines used on each of them. They want to use a drug applied via a patch that was originally developed for treatment of epilepsy. This is done later that day and within 24 hours the left arm which was so painful I could not even touch it, is much better and she can use it – amazing what something the size of a postage stamp can do.
Next day it is sunny, so she suggests we go for a drive. It takes a few minutes to walk to the car and on the way into the countryside, we buy an ice cream. After driving for 20 minutes, we stop in a small village and listen to the birdsong and watch builders at work. 20 minutes later, she wants to return and I drive back slowly. Reaching the hospice, she cannot stand up but can walk after I have helped her to her feet.
Recovering from the little drive of just a few miles takes the whole next day. On Friday, family arrive including her nieces and I am allowed to go to a lodge meeting booked weeks before. The weather is warm and sunny with everyone having a grand time in the central courtyard around which the hospice is built and where there is a fishpond.
Take me Home!
Next day she wants me to take her home. While the hospice shower room is perfectly clean, she wants to shower in her bathroom, so off we go. This also illustrates the relaxed atmosphere of a hospice compared to a hospital. The shower proves to be a disaster where she becomes very distressed and passes out. I am holding her in my arms and I cannot see any pulse on her neck? Is this it? After what seems an age, but probably no more than 15 seconds, she regains consciousness. Her words don’t make sense but at least she holds onto me and we walk slowly to the bedroom where I call the ambulance who arrive during the phone call.
At my suggestion, oxygen is given quickly and helps slightly, but the heart is racing and she is only conscious half the time. The ride to the local hospital with sirens and blue lights flashing, is not pleasant after having heard hundreds of them in my lifetime. After going into A&E I am told to leave her bedside, doctors crowd around and curtains are drawn. Few minutes later I hear “Clear! Hundred Joules!” Twenty minutes later I am allowed back and the pulse rate which had been over 150, is back to around 80. For nearly an hour, she looks her old self again and the blood pressure is higher. We are told later that had she not been admitted, she would have died that day.
Visits to two other wards including Intensive Care, prove to be a huge disappointment. In Intensive Care, we are finally told that they are not going to do the promised dialysis as the blood pressure is too low and the procedure would not give any lasting improvement anyway. Listening to the young bearded doctor with hair similar to what mine was before it went grey is quite surreal. It’s like looking at a younger version of myself – young, not overweight and really keen to impart the knowledge that you have acquired at that age.
Cathy is too tired to travel, but we finally get back to the hospice the following day. Finally, we are able to discuss final arrangements in a brief lucid episode. Previous attempts to do this had never got past two sentences, but a huge relief to know what she wants. One of the young nurses is very emotional when preparing some medication – first time I have seen a nurse cry.
Following day, much is spent asleep. Cathy has stopped eating and hardly drinks anything. Doctor tells me that this is normal for end of life situations – and reading between the lines, the body is basically shutting down. This prompts a phone call to a sister who says initially that she will visit Saturday. After pointing out that the doctor has more or less just said that she won’t live that long, she is on her way.
While Cathy is unconscious, this doesn’t mean that she cannot hear and nurses tell me that hearing is the last sense to go. I whisper in her ear that her sister is coming which with a very quiet grunt, shows that she has understood. Sister arrives and bursts into tears. Allowing 5 minutes for her to recover, I tell her to sit down and say to Cathy whatever she needs to say. After this, there is nothing else – we have done all we can. Cathy is trying to speak – it sounds like “th…th…” Is she trying to say thank you? Some minutes later, sister points that she seems to have stopped breathing, so we press the alarm button. Nurse arrives 15 seconds later who confirms this. So my second wife dies – twenty years younger than I am – aged 45.
I don’t want to go and end up staying two more hours. She just looks asleep but after phone calls to closest family, it’s time to leave.