But somehow we needed to keep pushing forward the idea that what she was doing, was the very best thing. I apprised the vet beforehand, and told him that as far as my daughter was concerned, he was the "cat specialist" and she would trust and believe him. I had good knowledge that this vet was not only an excellent diagnostician, but also incredibly kind and gentle. He asked how much my daughter would understand and comprehend (everything) and conducted the whole procedure in a humane, thoughtful, and utterly gentle manner. My daughter conducted herself with poise and grace throughout the whole time (and I think that her favourite TV channels, TV vets and Animal Rescue, probably played a part here too).
And now we come to afterwards.
She phoned me immediately from her caregiver's phone (she lives some way from me and I was unable to drive, having had a recent hip operation, otherwise I would have been there), and told me what had happened. Both of us were very tearful. And then she said she thought she would like an ice-cream.
She was allowed that (and, stupidly, I didn't stipulate what kind. So she had one that probably had the calorific value of two meals combined). Later that evening, she asked her caregiver if she could go to McDonalds for a coffee and muffin. The caregiver said that she wasn't able to do this. So there was a medium-sized melt-down. The caregiver left the room until my daughter calmed down a little. What she did next was to gather up 10 of her tiny incense cones, go outside onto the drive-way, sit down and put them in a ring around her and lit them. Each cone represented an animal in her (and our) lives that had died. She spoke to each of them individually, and collectively, telling them stories, reminiscing, and introducing them to each other. This lasted an hour. The caregiver, not wanting to interrupt her, could only finally entice her inside with the temptation of a plate of jelly.
The day after (she'd arisen at 2am to play music), she was calm, collected, and spoke easily about her cat and... how she's going to get a new one very soon. After she's finished grieving...in about a week, or so, she thought...
This blog is a bit longer than usual and the general story finishes here, but if you want to read further, I was so interested in this behaviour that I wanted to find out more. So what I did was to google behaviours in the intellectually disabled group. There have been lots of papers written, but I didn't find much anecdotal evidence which is always much more interesting to parents. I also wondered whether, because our sons and daughters with PWS are living longer, and well past their previous life expectancy, this was an area that we may need to look at for future reference.
Professionally, there was a lot of stuff like:" Individuals with intellectual disabilities as such may have limited understanding of causality. There also may be cognitive reactions. In the initial phases of grief, people may be in shock – disbelieving or denying, unable to process information. Throughout the grieving process, individuals may find their concentration or span of attention is impaired. They may process information less effectively. It is not unusual for health professionals or others to be asked the same question or to provide certain information repeatedly." (Of course, we must understand here, that the subject of the grief in this instance is not just a cat, but someone close to that person.)
This kind of information, to me, seemed pretty normal for anyone in a state of grief. This article went on to say that it wouldn't be unusual for "people with intellectual disabilities to experience sleep disorders", or engage in "risky behaviours such as substance abuse. They may be angry, lashing out, or seem withdrawn." They may experience "impaired judgement" and theses changes may be profound.
Some other articles described stages of process for dealing with grief, like, preparing the person, instructing caregivers, modelling emotional support etc. All of which is necessary, and it's good to know that such work has been done on this kind of preparation already. Wanting to know more, I asked Professor Tony Holland (Professor of Psychiatry, Cambridge University, and President of the UK PWSA) what he knew. He led me to Professor Sheila Hollins' work. A Professor of Psychiatry and Disability, she has a son with an intellectual disability; Professor Hollins is also a Peer of the British Realm and as such, one would think has some influence. Professor Hollins has written some excellent books about loss and grief, mainly in pictures, for people with disability which you can see here "Books Beyond Words"
To his knowledge, Professor Holland did not know of "anything specifically written about grief in people with PWS, but I could imagine that loss could have other implications that lead to high anxiety - eg, it's a change in routine", and he also advised that it is best to try to explore the mental experiences so as to understand what "might have started as grief, has now moved onto something more."
I still wanted to know more so I turned to my e-group of older parents with older kids with PWS (PWS_Older@yahoogroups.com if you're interested). We've had this group since our kids were in their early teens and shared a lot of 'stuff'. I was wanting to know about responses to grief in anecdotal terms. And this is what I was told:
"My Dad passed a couple of years ago and a friend was killed in a house fire 7 yrs ago. My son handled all that amazingly well. But let one of his chickens die or be killed by a predator and he goes off the deep end. He screams and hollers for hours…..then he has to bury it in the back yard. We have our own little pet cemetery….."
"My son is very spiritual, as am I. He attends church and loves being an acolyte, a server and in the choir. He loves the ritual and pageantry. We have had many discussions about God, and such. Sometimes he's so very deep. He grieved for our pets and his granddad in a strong, but deep way. He also seeks solace in food, but then again, don't many of us?"
"A friend who was also a home help, had given our daughter a kitten for Christmas. Some years later, this friend died. She had an open coffin and viewing before the serviced. We explained to our daughter as best we could, and gave her a choice to go and view. The cat had to go as well. So off we went, four of us, my husband, daughter, me, and the cat. No one questioned the cat being there, and in a way she was an ice-breaker for everyone. They loved seeing the cat there, and how much she had grown since kitten-hood. " My daughter looked at our friend in her coffin, talked to her, and then we said a prayer.
She has coped with death in the family really well, and the death of animals as well, since we live on a farm. But pet dogs, or cats, or lambs - she just has to replace them straight away and is constantly looking for one til it is replaced."
"Yes, my daughter felt grief, but handled the reality very, very quickly. She was very strong in that area. She could face life 'square on' but felt very deeply for her animals. Replacing them seemed to be the answer for her as she then enjoyed them young again and it took her mind into a new experience. It could be that she was able to cut off after a certain point in her grief pattern."
"I knew of someone who was 'engaged' for a long time to a lady (with PWS). They hoped to marry. They lived in close proximity, possibly in the same house, I don't know. However, she died. I asked the provider how it had affected him and how he was doing. She said that it didn't affect him at all and that he was just living as if nothing had happened.
"Another lady died recently, she'd lived with three other ladies for at least 12 years. She died on a Friday. The other ladies were concerned about whether the group would be going garage-saleing the next day as previously planned.
"With my daughter, there's no emotion, but only questions about the person's/animal's whereabouts... for years!"
"When his paternal grandmother passed away a few years ago he handled it really quite well. His main upset was that Dad no longer had a mother or father. A few months later when it was Mothers' Day he didn't want to see me at all - he just wanted to take Dad out for lunch because he didn't have his mother."
While we're on the subject of death - how about the after-life? My daughter had an experience in her new home whereby some chimes began tinkling for no reason, and a small pot of handcream leapt off her table across the room. To cut a long story short, the caregivers had a priest come in to bless the house, but my daughter asked that the priest allow her friend (who had died a few years ago, and who my daughter thought it was) to continue to visit. And, apparently he does - the chimes ring, and my daughter holds a conversation with her friend. In answer to this, one of my e-friends said this:
"My son has frequently been visited by family members who have passed. He mentioned my Mom a few times and his other Grandmother from his Dad's side. But mainly it's a young cousin of ours, she has visited many times and my son would tell me about what she was doing, what they talk about and about heaven. Sometimes I hear him laughing in his room and later when I ask what was funny he'll tell me that he was talking to his young cousin. Recently a mom on facebook who just lost a child (non pws) mentioned that her child with PWS is the only one in the family who is visited by the one who passed. I believe our kids know and see things we are unable to."
This is only a small sample from six mothers, and you can see that grief in PWS may run the whole gamut of expression, just as it does in the normal world, but perhaps there is a link to understanding grief that our guys have that can help us understand them even better. I just wanted to write about this in case there were other parents wondering the same thing. I'd be happy to hear any comments. Quite possibly, it's the behaviour before the event that is more challenging than afterwards, but we need to be aware of both sides of the coin.