My Life

I've kinda been blogging erratically and without my usual focus for a while now, and it's been bothering me that I've been inconsistent, lacking in focus, and not delivering anything of real quality. I miss you all, I miss reading your blogs, writing interesting posts and and basically being the me that you like reading (if you know what I mean).

Well, there's been a lot going on in my life, which explains my absence from the decorating world and the world of fun and pretty things. Of course I still think about these things (and love them), but they've been further down my life list for the past couple of months.

What's happening?

On September 6th, my Dad went in to hospital. He had fallen badly and was unable to move, so Mom called an ambulance. It appeared he had fractured his pelvis but in the end he did not, and just had soft tissue damage. The reason the fall was so serious is that my father has a degenerative neurological condition called Olivopontocerebellar atrophy, a condition that affects the cerebellum and causes it to atrophy (shrink) and lose function.

Dad has had this condition for 14 years and for the last 7 years has been house-bound after losing his driver's licence. Since that time, my Mom has become his sole caregiver.

Dad's condition affects the cerebellum, which is the balance-control center of the brain and also controls fine motor-type skills. Because of this condition, patients become "ataxic" which means that they do not have balance and walk with a staggered gait. Eventually they cannot walk and become wheelchair-bound. Speech becomes slurred and scanning. They lose fine motor skills, losing the ability to coordinate movement, to write their names, to feed themselves. Eventually they lose bladder and bowel control. Because of the loss of balance, people with this condition fall frequently and often have broken bones and injuries until they become wheelchair-bound. Eventually, many have swallowing difficulties and choke or aspirate (draw liquid into the lungs) and die.

In addition, there may be cognitive (thinking) aspects to the disease. People can develop intellectual and cognitive impairments and may have behavioral and emotional issues.

When Dad fell on September 6th, it was one in a series of falls he took that week. Over the past couple of years, Mom has had more and more difficulty caring for him. He has insisted on walking with a cane despite his increasing impairment. An expensive walker sat unused in the corner as he insisted that walking (and falling) was acceptable. He became increasing hostile. He became verbally abusive to Mom over this time, and did not seem to understand the consequences of his actions. He became very difficult to care for and demanding. As he became incontinent, he began to refuse to let Mom help him out of wet clothes, etc. Mom could not get him to bathe and had to fight with him to change his clothes. He became obsessive-compulsive about emptying garbage cans and doing the dishes. He began to rage about everything that did not go his way.

This summer, Mom could no longer handle it and hired home care, 25 hours per week. This improved things, as Dad was now accompanied during the day when she was at work. But she was still tired working full-time and being his only evening and weekend caregiver. This was particularly hard as his judgement worsened, he became harder to care for, and he fell more often. Mom often came home to Dad in a bloody pile on the floor. Dad's family provided no assistance (they are a disfunctional lot to say the least) and any help came from Mom's family. Mom had little or no respite and could not leave Dad alone for extended periods. She became a prisoner along with him.

Mom was almost on the verge of a nervous breakdown, and so was I, worrying about her, and then worrying about him.

What complicated matters was my relationship with my father. Dad was an alcoholic and was not a very good father, nor husband. He was a violent drunk and although he never physically abused either of us, he was prone to breaking and smashing things. He had a quick temper and was quick to rage. Our life was spent on eggshells. As Dad became sick, things were complicated because he became more difficult and yet Mom felt an obligation to stay and take care of him despite her need for peace and respect and some kind of life for herself. My Mom and I are so close that as her life became harder, I became more stressed worrying about her. They live in a rural area and she seemed to have difficulty finding reliable people to help her with things. She'd had a heart attack in 2000, and needed to exercise and relax, but never had a moment for herself. And Dad was a constant stressor, roaming the house at night, going outside to smoke, falling constantly (breaking bones and cutting his head open and breaking his glasses and such!), refusing to help himself, turning the tv on loud at night. Doctors told her there was nothing she could do. Her only option was a divorce since he refused to go into a nursing home. Of course she wasn't going to do that - it just wasn't an option to abandon him now.

Then he fell on his 57th birthday, and went into hospital. Since then, the health care system has finally paid attention. They've told him that he needs to be in a wheelchair and that walking and falling are no longer acceptable. They're training him with a wheelchair but nurses have been struggling to deal with his belligerence, hostility and volatility. He is often incontinent but does not realize it, and sometimes refuses to change his clothes. He is often confused and frightens other patients.

We've been struggling, not knowing what to do. Mom was told he will be sent home and she will have to get more home care, which she cannot afford, nor handle. I was home for a week in September and then took a pre-planned trip to Tofino and have been trying to do my course work, and my job,and large quantities of worrying. I've been trying to talk to my exhausted Mom daily about what's happening with Dad, as well as talking to his health care team. I am sad and worried for him, for her, but also tired of it all.

The staff of therapists, psychologists, psychiatrists, and doctors have been struggling to assess his abilities and deficits. He often refuses the tests. Finally, a geriatrician has taken an interest and has assessed Dad and feels that besides cerebellar problems, he is also showing frontal lobe issues, which explains the lack of inhibition, the hostility. There are other deficits in cognition, judgement, insight, and so on. Yesterday, he was examined by the team and and deemed incompetent. What this means is that, for his own good and because she can no longer manage him at home, Mom can put him into a nursing home without his consent. The reality is that she doesn't want to, but his condition, with the constant risk of falls, the incontinence, the emotional outbursts, is un-manageable. As well, since he lacks insight and judgement, he does not seem to recognize his limitations, or why he should be careful, and he constantly puts himself at risk. He is a risk to himself and deserves to be protected and cared for by professionals 24/7.

This is, of course, utterly devastating for a family, but it is also a blessing. I was waiting and hoping for that news, only because it was so obvious that he was out of control and Mom could no longer cope. But it is also such sad news, that he is not competent to make his own decisions. It is sadder still to learn that what you thought were behavioural issues might have been manifestations of the illness. I have been so angry at Dad for so long because I thought he was being a jerk to Mom, but she has been telling me "it is the illness". I was never sure what to believe. His behaviours just seemed to be an extension of the "old" Dad, the one from my childhood who was so cold and hateful. I still do not understand where the line is between personality and illness. Mom and I are only now coming to grips with these grey areas after years of emotional abuse. Was he responsible then? Was he mentally ill? What is personality and what is disease?

The next steps will not be easy. The next phase will be a nursing home. It is all so complicated. I haven't slept for a week, worrying about what would happen if they sent him home, as it appeared might happen before new doctors came on the case. I feel like I have been through a war and it is finally over. But the process isn't over. We still need to explain to Dad that they are recommending a nursing home for him. We still need to see him through the process. Mom still needs to be there. But finally she can sleep a full night without worry knowing he is safe, and will not be woken in the night to cupboards slamming or him raging.

I am sad and angry and lost right now. I am angry that doctors didn't help Mom to get Dad more resources sooner, didn't work harder on a diagnosis, angry at the home-care system who refused to assist her sooner and provided paltry resources. Angry that I had to grow up so fast as a child, that I had to live with that heightened emotion all the time. Angry at his family for never helping. Angry at him for being such a terrible father and then for being such a terrible sick person. Angry at him for traumatizing us with his anger all those years. He was always this selfish person, living with these two good, giving women and sucking them dry. I hated him, and now I pity him, and I am going to have to figure out now how to love him because maybe it wasn't all his fault, not all of it. I got many good things from my father too, his work ethic being one, his way with children, and also strangely, his streak of intense kindness, which overtook him at times. But it is hard to celebrate at the moment as I try to re-connect the pieces of my shattered childhood.

I wonder if anyone can understand this unless they have lived with emotional abuse themselves, or have been a solitary caregiver. I guess anyone with compassion will get it. I hope. It is a story that many, many people live.