My cousin’s husband died, he had Parkinsonian dementia and has been in a care home for six months. He never really recovered from the death of his son at 30 of a brain tumour.
I won’t be able to go to the funeral, up in the north because I’ll go and take care of my mother, who is very affected by the death and distraught, to say the least.
The death of a person with any form of lengthy disease is, for those left behind, a matter of much conflict. When my mother in law died we were, above all things, relieved. The previous five years had been a terrible strain in so many ways. Financially my husband and I, newly married, had been forced to entertain his parents every long weekend until we were seriously in debt. My cousin and her husband had been overtaken by his illness before they were able to transfer many of the financial arrangements solely into her name. I am currently, as you’ll know struggling with the financial arrangements for care of my mother.
Whenever there is a long term illness the financial burden falling upon the relatives is extreme, exhausting and of indeterminate length. Therefore an end to the uncertainty, which is, in itself the foundation for much stress, is a great relief.
After which, naturally, you feel guilty for feeling relieved.
The cessation of physical suffering, where there has been pain or disability, is a cause for relief to close relatives but in the dementias, where the sickness has been invisible in all but its effects and they have been mostly inflicted upon the relatives by the sufferer, the emotions are very mixed. There may be a sense of estrangement from the sufferer which complicates matters; last week for the first time my cousin’s husband had not known her. My son, visiting his aunt, had been prepared for her not recognising him and, indeed, when he arrived, although she was glad of the visit, she had no idea who he was. My mother in law, who had been talking baby talk practically from the moment my husband and I started dating, when brought to see her new born grandson for the first time, just laughed and dropped him, fortunately on the bed.
It is normal to react as if the demented person was capable of rational thought and normal emotions because they appear to be as usual. If we could see the parts of their brains that are missing or dead, which deal with emotions or memory, we would be less surprised or upset, but because we cannot, we are continually hurt and upset when these damaged parts of the brain are unable to function to provide the response we expect. When this happens often enough we do begin to feel alienated and to adopt the carapace of less emotional involvement to protect ourselves. Needless to say this will double the guilt at the eventual death, as we may have felt we were pushing away someone who was ill; we may even feel somehow responsible for the death as though our emotional detachment had caused it.
Anger is a well recognised part of grieving, it is certainly present in grief for all the dementias I have come across. Anger at the disease, anger at the behaviour of the sufferer, anger at the powerlessness to halt or control the disease and anger at the amount of work and input required by relatives for what is primarily a condition requiring palliative care, rather than being responsive to medication or surgery, is, in my experience, normal. These are a group of diseases in their infancy as regards effective management and treatment, we don’t even have a good awareness of the causality yet. This, in itself, makes matters worse by introducing large chunks of the unknowable into the equation and leaving us nowhere to place the blame. People do love to apportion blame when bad things happen, it’s part of the reassurance that bad things will not happen again.
In the case of my cousin’s husband he never got over the death of his son. The sadness, the unfairness, the anger and a whole other maelstrom of emotions went charging around his brain for years until they damaged it. I think. I could be completely wrong. What killed his son, I believe, was his grandmother’s assertion uttered from the day he was born that he should be a solicitor and keep her in her old age. He had neither the temperament nor the natural inclination but he kept at it until it killed him. I believe.
At present the previous paragraph is quite radical and I have no rational support for it at all. I do believe that in the future we will learn of the relationship between emotions, chemicals and the brain. We will learn that sadness, anger, aggression and extreme intellectual striving are as bad for the brain as inadequate sleep or a diet high in saturated fats, salt and burned bits or sitting in a chair doing nothing but watch TV whilst drinking a lot of dehydrating alcohol.
For a healthy brain you need water, fruit, sleep, fresh air, exercise, thinking and repose. You need to let go of anger, of mourning, of resentment and of obsession in any direction and most especially the need to control the outcomes in any life other than your own.
As a race we need to divest ourselves of the notion that more work, more money and more stress is desirable and instead to find the balance of all the things we evolved to do that make us truly happy.
They are to move, to do, to share, to achieve, to create, to nourish and to get out in the fresh air a little bit every day and finally to let go of all that has happened each and every day and to sleep.
Personally, as soon as I can, I shall get out in the garden and dig. I have dug my way through a lot of bereavements and the aftermath of quite a few funerals. I could have my garden all organised and planted but I like to keep a couple of beds for digging because people do keep dying. You cannot stop it, control it or prevent it. All you can do is to make sure you live each day of your own life.
JaneLaverick.com – in the midst of life………..