Knowing that a loved one has to have surgery – even if it isn’t major – is always a worrying time. Knowing that your loved one has life-threatening, rare medical conditions, and also has dementia, which may cause complications for the anaesthetist and cause further deterioration, is even more worrying. Barbara Halloran shares her story.
In early April we discovered my 70 year old husband, Graham, had what we suspected to be a hernia. We began pre-hospital admission consultations with the surgeon and the anaesthetist. Graham had already asked me to ensure that should the worst happen he would not be resuscitated. I promised him I would convey his wishes to all who needed to know and do this formally to hospital staff via his advance care directive.
The surgeon and anaesthetist were very understanding and compassionate. The anaesthetist made a copy of the directive in his notes. I have never seen anyone remain so neutral, especially when approaching Graham’s various medical conditions and working out how he would manage the anaesthetic. I had previous care by him, so had every faith in his skill and care.
The importance of a caring attitude across all staff makes such a difference, at all levels across a hospital. I was unfortunate to have one distressing encounter with a reception staff member where I felt like I was being treated as a nuisance, when I was only trying to do the right thing following up the surgeon’s request to have Graham’s directive included in his notes.
As this was Graham’s first visit to hospital in his life, I asked him if he would be more relaxed if I stayed with him and he said he would really love me to be with him so I arranged to “sleep” in his room. As it happened he did become distressed because of the post-op pain. As he has never liked taking medication it was a challenge to convince him that the tablet would help. As I was there with him I was able to gently persuade him to take the tablet for his pain and after a few minutes the pain subsided and he became his normal co-operative self. When he finally fell asleep, the nurse came at 2.00 am to check on him. After some convincing, she agreed to a visual observation of Graham, rather than waking him and causing him further stress.
The pre-admission nurse (who was supportive and keen to include Graham’s advance care directive in the file) understood the necessity to have the information on file and was very reassuring and apologetic for my earlier experience. By being with Graham at the hospital I was able to keep him calm, convince him to take pain relief and made sure he had a good night’s sleep. The flexible approach of the nurses was helpful.
Graham had no side effects from the anaesthetic or the surgery. He has healed beautifully, but it has been challenging explaining why he has a scar on his tummy.
The only hiccup in this experience was that the receptionist didn’t understand the necessity of advance care directives (and had I not been feeling strong on that day she would have had to provide a large box of tissues!). I understand everyone has a bad day now and then; however, every staff member plays such an important role in the patient and career experience and every experience – positive or not – is remembered.
Graham had a heart attack on 4 August and died on 11 August. We had known since 2012 that he could have a heart attack at any time and we were prepared for this eventuality. I am doing OK. Graham got his wish to die of heart failure, which we were prepared for, not dementia which was stealing his memory and creative skills daily. I gain strength by sharing my experience with others in the hope that it will make their journeys easier. In my journey I can impress that every staff member has an impact and important contribution to care.