"They all said don't give up"
OUR HEALTH EXPERIENCE: ANGELA BOLTON/ROBERT BOLTON
MY LIFE has been in a holding pattern since my husband, Robert, had a cardiac arrest in hospital last October, a day after having surgery to remove a small section of cancerous oesophagus.
It was devastating. He was in ICU at St James’s Hospital in Dublin, and heavily sedated. After two weeks he was moved to an acute ward, where he has remained since, slowly progressing from a coma to minimally conscious – officially called “disorder of consciousness”.
In January we were told that the best we could hope for was that he would be made comfortable, his disability managed and we should not hold out much hope for a meaningful recovery.
I go in to him every day, twice a day. I try not to over-interpret signs of improvement but myself and other family members have noticed definite progress.
If he is asleep he wakes up when I go in and talk to him. He opens his eyes a little when I say “Hello sweetheart, how’s it going?” And when I touch his face, he will wake up completely.
He is hoisted out of bed with a sling and put in a wheelchair for five or six hours a day. I bring him outside if possible but if it’s rainy we stay in and I’ll give him a massage, play guitar, do passive physiotherapy or read to him. Sometimes we just sit together and do nothing.
It was our wedding anniversary on April 18th and when I read him a card we got from my sister, he started to sob. His stomach was heaving and the tears were pouring out of him.
I had never seen that before and I ran out to the nurses, thinking, “He’s upset – this is good, but I don’t like seeing it.” This was just after he had been inadvertently off his medication for five days, when a line fractured, and during that time he seemed to be getting more alert. He would look at people who said his name and he was holding his head up more.
I had been advised Robert needed long-term care until he could be given a 15-day Smart (Sensory Modality Assessment and Rehabilitation Technique) assessment in the National Rehabilitation Hospital (NRH) in Dún Laoghaire, Co Dublin, for which there was a 12-month wait. Because he was 66, he was precluded from any other neuro-rehabilitation centre and a care of the elderly facility was the only option.
I didn’t want him parked and forgotten about in a care for the elderly facility, where there would be no appropriate therapy.
Meanwhile, myself and other family members were doing all we could to find out about the rehabilitation of people like Robert who have suffered hypoxic brain injury – caused by a decrease in oxygen going to the brain during his cardiac arrest.
We were being given very little information by medical staff about what could be done to help him.
I talked to survivors of brain injury and people who had cared for them – they all said don’t give up.
I am 49 and have been with Robert, who has three adult children from his first marriage, for 27 years – although we got married only four years ago.
Our home is a flat over Fanagan’s funeral home in Aungier Street, where Robert was night porter and I was a receptionist. They let me take over his job, which means I am on duty to answer the phone six nights a week but am off during the day.
When I found out about the HSE treatment abroad scheme, and met a woman who had used it to take her brain-injured husband to a Bristol hospital for rehab, we started to look at what was available in the UK.
Robert’s sister, Ritamary, and I visited four medical centres where we found a very different attitude. Their practice is that as soon as a patient is stable, they start a three-month Smart programme to try to bring him to some sort of sensory awareness.
We were most impressed by Derick Wade, a professor of neurological rehabilitation at the Oxford Centre for Enablement, who was very frank and sparkled with positivity.
He said they could take Robert right away.
I was horrified when he told me that if Robert was more aware than was known, he could withdraw or become depressed due to the lack of stimulus, making it harder to reach him when the time for treatment came.
I felt if I could get Robert to Oxford, I would know I had done my best for him. That is the only way I, as his wife and primary advocate, can get some peace.
I got medical support at St James’s at the end of April for an application to the treatment abroad scheme, on the basis that the therapy Robert needed was not immediately available here and the sooner he got it the better.
Our application was turned down in May because the treatment was available here. It did not take the timing issue into account.
We appealed the decision but were turned down again last month, with a letter noting that the NRH would now be taking Robert in August or September and that the Oxford centre had indicated it would not be able to take him for another seven weeks anyway.
I know Oxford could have taken him at anytime in the previous six months but, by the time everybody had finished dragging their feet and faffing about, Robert’s bed had gone
If he gets into the NRH this month, that will be fantastic, but we still haven’t got a date. My concern now is what is going to happen afterwards.
My understanding is the NRH can take him for a maximum of three months and Robert needs slow-stream rehabilitation. I am prepared to do as much of that as I can but he needs professionals for the next year at least. Now I am trying to raise money to fund whatever rehabilitation I can get for him in the UK.
We don’t know how aware Robert is but I believe he is hearing me. Ritamary and I give him textures, smells and tastes of things. There are times he will respond and there are times he will just sleep.
I was playing Love Me Tender on the guitar the other day and he started to cry. It is a song that has a special meaning for us. Music has always been central to his life – he played with various bands, including Stepaside – and it is a way I think we might be able to bring him back to consciousness.
I know in my heart that he is never going to be the same but I do feel he can have a much better quality of life. I will love the new Robert just as much as I loved the old Robert.
HYPOXIC BRAIN INJURY: THE FACTS
Hypoxic brain injury results from a decrease in the supply of oxygen to the brain. Hypoxia can cause coma, seizures or brain death. Prospects for recovery can be hard to predict. It is often said, “if you have seen one brain injury, you have seen one brain injury”.
In conversation with Sheila Wayman
Angela Bolton blogs on robertbolton.org