Following on from yesterday continuing the sharing of Penny de Quincy’s experience as a carer for her dear husband, who died from MND, earlier this year, I have reproduced her information, verbatim, below.
I’ve just read your latest blog and wanted to tell you that Stuart also became anxious (completely out of character) and I started giving him Lorezapam at night, at first just half a tablet and later a whole one, and they did seem to calm him but not sedate him too much. You can just take them as and when required, I believe.
Also we had a JUST IN CASE kit, provided by MNDA but stocked by the GP. It is in two parts. The carer’s side contained Midazolam in a form which you squirt into the mouth and which has an almost immediate effect of calming the patient, especially useful in breathing difficulties, perhaps while waiting for help to arrive. The other section is for a qualified practitioner to administer, and contains Midazolam injection and diamorphine. I found it very reassuring to have this by me, although we never in fact had to use it.
Can I put in a word for Hospice at Home? Without them Stuart would have had to go to hospital or at least the hospice. They are on call 24/7 and your carer can ring at any time and get a response immediately. The nurses are highly qualified and come out and administer drugs when needed and give advice over the phone, contact district nurse if she is closer and more able to respond. If you have a hospice in your area it might be a good idea to contact them and get an assessment now so that when you need them this is all set up. Most people aren’t aware of what they do. It is a marvellous organisation and they mastermind the drugs and everything necessary for the patient to remain comfortable until the end. They are absolute experts in palliative care, and have also supported me since Stuart’s death.
Please do let me know if I can be of further help.
All best wishes,
I have reproduced her account of Stuarts Last Day’s, verbatim, below.
STUART’S LAST DAYS……..
I am writing this in the hope that it will help other people suffering from MND to realise that even though they are terminally ill, they can still exercise a lot of control over the manner of their passing.
I should say that Stuart and I have, for 30 years or more, supported the work of “Dignity in Dying” as we always believed that people should be able to choose the time and manner of their passing within a legal framework. Although this is not (yet) legal in the UK, we can now make a lot of choices through an Advance Directive, which is LEGALLY BINDING.
Stuart was a quiet man, with a great deal of courage, and it was this courage which enabled him to die as he did. Careful planning is required, and that means facing up to things sooner than perhaps you or your loved ones would like, and putting in place the mechanisms to make your death as easy as possible. I know that MND sufferers are terrified of choking, suffocating, or what really amounts to drowning in your own secretions, and I want to tell you that it need not be that way, and that Stuart died at home, peacefully.
Stuart had signed an Advance Directive (a legal document which has to be respected) some months before, refusing ALL intervention (PEG feeding, artificial breathing apparatus, tracheotomy, antibiotics, resuscitation) and saying that he would only accept treatment to make him comfortable and relieve distressing symptoms. He spoke to our GP about it, and lodged a copy with him. His specialist had a copy, and we kept a copy at home in a yellow folder (this is a scheme we have in our area, and it also contained a DO NOT RESUSCITATE form in case paramedics were called for cardiac arrest or pulmonary failure). He discussed his wishes with everyone at Hospice at Home (more of this later), the dietician, speech therapist, and anyone else in his care team.
He then put it to the back of his mind, and concentrated on enjoying the last few months of his life as much as his illness would allow. We had holidays with friends and celebrated our 25th wedding anniversary. And all that…….
Although his MND had started slowly with only his right arm affected (he was at first diagnosed as having had a stroke) and proceeded in a fairly leisurely manner for about a year, his decline then became more rapid, until he could barely walk and it was becoming difficult to perform most everyday tasks.
When his swallowing became difficult, the dietician explained that this could go quite suddenly, and that at that stage, or indeed before, he would again be offered a feeding tube (PEG) which he had always refused, and that if he deteriorated to the extent that he couldn’t swallow liquids, then palliative care would be the only thing; he would be fitted with a syringe driver containing various drugs and could only survive a short time without taking in liquid.
He never faltered in his resolve, although we all checked from time to time to make sure that he didn’t want to reconsider either PEG feeding or breathing apparatus. When his swallowing finally went, and it DID go very quickly, the district nurse and the doctor explained again what would happen and asked if he was prepared for the fact that if he continued to refuse all treatment his life was drawing to a close. He said he was ready for that, and had been ready for some weeks. I think I knew this, as life was getting increasingly difficult, though he never once complained.
So this is what happened. He was made comfortable with diamorphine, and drugs to dry up secretions and to suppress anxiety.
He was alert enough to see and know his family and friends for the first day or so, then gradually slipped into a deeper sleep, and died peacefully three days later.
We could not have done this without the help of Hospice at Home, our wonderful District Nurses, and some sleepovers by Marie Curie Nurses. All this was masterminded by Hospice at Home, who liaised with the rest of the team over dosages etc to keep Stuart comfortable.
It wasn’t easy, but it was what Stuart wanted, and his courage gave me the courage to share it with him. He was at home until the end, and there were only a few brief moments when he was not quite as comfortable as I would have liked him to be. Which I think is pretty good, given what it might have been like and given the difficult nature of this horrid disease.
I know we are very lucky to live in Suffolk, where palliative care is so good and the Hospice so well organised, and I acknowledge that this standard of care may not be readily available everywhere. But I want to spread the word that this IS available, and that you can make it happen if you are brave enough to prepare for it.
Stuart donated brain tissue to the Brain Bank at Addenbrookes for research into MND. This also needs careful planning in advance, and the consent and support of loved ones/next of kin. Tissue must reach the Brain Bank within 48 hours, so it is crucial that preparation is done and that everyone on the medical team knows about it.
I am very proud of my darling Stuart. He was exceptionally brave and steadfast in his refusal to accept any treatment to prolong his life. And all that in spite of (or because of) the fact that he loved life with such a passion. The quality of his life was what mattered to him, not how long it lasted. And broken-hearted though I am not to have him with me any longer, I know that at the end he got the death he wanted, and that I was with him all the way, and that will be a source of great strength to me.