Friday, October 26, 2007

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.

19 comments:

  1. This comment has been removed by the author.

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  2. Hi Terri,
    Would you please send me your email address? I have a question for you.
    Thanks,
    Linda
    linda@restyledhome.ca

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  3. Terri, you have had so much on your plate. Too much for anyone to bear alone, that's for sure. I hope that you will take good care of yourself first because there is no way that you can support your mom or dad in this if you don't. (You're so right...you could well have PTSD and it would be no wonder.) There is a way through this (I've been saying this to myself a lot lately) and I know that you will find that way. I'll be thinking of and praying for you and your family.

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  4. Terri,
    My heart is breaking for you. This situation is so devastating on so many levels.
    I've been worried about you, even before reading this, feeling like maybe something was wrong.
    I think I need to listen to that voice sometimes, I should've emailed you about it.
    I am praying for you tonight, friend. What a burden you have had to bear. I pray you will be able to forgive and move on to happier days.
    The only thing I have lived through that is even remotely similar is Alzheimers with two grandparents. Not at all like what you have been through with your dad, but a similar feeling of confusion over who the real personality is and where the disease kicks in. And the extreme sadness of watching the disease take over someone's life.
    Many many prayers for you tonight.
    Melissa

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  5. Terri-

    your beautiful, honest writing is inspiring. I'm truly sorry that you are going through such a rough patch with your family. My thoughts are with you and your mother.
    ~LA

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  6. dear t, I just had a good cry for you and your mom. my heart is thoroughly broke for both of you. please know that your hearts do not beat alone.

    much love my friend, a

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  7. Terri,
    I cannot imagine the guilt you feel now; but I do know the pain of the emotional trauma. You do, indeed have an enormous amount on your plate to deal with EVERYWHERE.

    And though I don't think you owed us an explaination of your absence or whereabouts, I'm hoping you may feel better, at least, unloading.

    Deborah

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  8. Anonymous10:01 am

    Terri,

    So sorry for the pain and problems you are feeling with your Dad's condition.

    You may want to contact Dr. R. Artuch, of Biochemistry Department, Hospital Sant Joan de Déu, Barcelona, Spain. Abstracts of his papers can be located on the NIH Pub Med site, http://www.ncbi.nlm.nih.gov/sites/entrez?db=pubmed Search on "Artuch R"

    In particular, see his "Cerebellar ataxia with coenzyme Q10 deficiency: diagnosis and follow-up after coenzyme Q10 supplementation." [PMID: 16677673]

    I had the rare privilege of seeing him present this work, complete with videos of the patients, at the International Coenzyme Q10 association meeting in April of 2005, and the recovery was amazing.

    Be aware that Olivoponto Cerebellar Atrophy (OPCA), like Parkinson's and Huntngton's and Amyotrophic Lateral Sclerosis (ALS, aka Lou Gehrig's disease), are among he neuromuscular diseases that are known to be "unmasked" by use of statin drugs.

    People who may have the genetic predisposition but no symptoms of these diseases have been thrown into full-blown late-stage disease subsequent to taking one of the cholesterol-lowering statin drugs (such as Lipitor, Crestor, Zocor, Pravastatin, Mevacor, Lescol, Caduet, etc.). This is what is meant by the term "unmasking" - also triggering.

    You might also want to Google Doug Peterson, who was diagnosed with OPCA triggered by Lipitor. His case progressed to MSA, and tragically he is no longer with us.

    The reason I raise the issue is that, if your father's decline is also triggered by a statin drug, such as Lipitor, his doctors may not be aware of the connection.

    Coenzyme Q10 is manufactured by our bodies, and a deficiency is rare under normal circumstances. However, the statin drugs, HMG CoA Reductase Inhibitors, when they interfere with cholesterol processing, also inhibit the production of CoQ10 and create a deficiency. (They also inhibit production of other essential items, such as Rho and dolichols.)

    Statin adverse effects are clearly associated with the other cognitive affects you mention. My own husband has been disabled cognitively and with grave neuromuscular and mitochondrial damage from Lipitor 10 mg over 4 years. He has been off the drug for 6 years and is still working toward recovery from the effects - and remains disabled.

    If your dad was taking Lipitor or one of the other statins, and his doctors have not stopped the prescription, be prepared for them to resist and discount or deny the medical evidence of cause. Dr. Golomb, who conducted a statin study funded by NIH and Robert Wood Johnson, recently published a paper also abstracted on Pub Med, "Physician response to patient reports of adverse drug effects: implications for patient-targeted adverse effect surveillance." [PMID: 17696579] She found that doctors overwhelmingly denied patient reported adverse effects of statins, saying "Physicians were reportedly more likely to deny than affirm the possibility of a connection. Rejection of a possible connection was reported to occur even for symptoms with strong literature support for a drug connection, and even in patients for whom the symptom met presumptive literature-based criteria for probable or definite drug-adverse effect causality. "

    One evidence of this blind denial of adverse effects is the fact that the World Health Organization recently took the bold step of calling attention to the large number of people who developed ALS, aka Lou Gehrig's Disease, rather than waiting for the FDA warn about it. Abstract is also on Pub Med, "Statins, neuromuscular degenerative disease and an amyotrophic lateral sclerosis-like syndrome: an analysis of individual case safety reports from vigibase" [PMID: 17536877].

    So, best wishes to you and to your father. He may benefit from Coenzyme Q10 supplements, and - if he was on a statin - discontinuing the statin. You may want to be certain you do not run low on Co Q10 yourself, and you may want to avoid statin use. If you want further info on statin adverse effects, visit Dr. Graveline’s site www.spacedoc.net or look at the FAQ on Statin Adverse Effects at http://www.freewebs.com/stopped_our_statins/StatinFAQ_031305wTOCv4.pdf

    Thank you for sharing your story with others.

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  9. Anonymous11:49 am

    One further statin connection left out of the previous post: Statins and low cholesterol are both associated with violence and mood swings.

    Not doubting that the alcoholism was responsible for the earlier abuse against you and your mother (who sounds like a saint), but the increase in violence and violent outbursts could also be the result of statin use, if your father was indeed taking a cholesterol-lowering statin drug (such as Lipitor, Crestor, Zocor, Pravastatin, Mevacor, Lescol, Caduet, etc.).

    See "Cholesterol and violence: is there a connection?" [PMID: 9499332].

    Also, "Low cholesterol and violent crime" [PMID: 11104842].

    Also, "Low cholesterol and violence" [PMID: 9575009].

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  10. Dear Anonymous, thanks for all your wonderful information and insights. It is a lot to digest. I read a lot several years ago but have lost touch with the current issues as it seemed a lost cause anyway and he was under the care of a neurologist. There was little info, it was confusing, and the illness progressed so I just stopped trying to figure it out, also being far away from Dad and his doctors, etc.

    One point about the statins - Dad has never had a cholesterol problem and has never been on Lipitor. That is a fascinating finding and I will read up on it, as I know many people who are on such meds, including my boyfriend and mother. I am not as I have good cholesterol numbers.

    I did send several of the CoQ10 articles to my mother a while back and she took it to the GP, and he put Dad on supplments I believe. I will look into it more and discuss with Mom again.

    I have included my email link, so if you have more info or want to write more, I appreciate it! Thank you SO MUCH! Terri

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  11. Still thinking of you and your family tonight, Terri!

    Melissa

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  12. T - so sorry to have to read this, but I hope that it helped it you "get it out on paper". I saw how hard it was for my mom and aunt to try moving my grandfather closer to us and then to get him help in the apartment. He definitely put up a fight about getting help, even until the end. Definitely hard, I know. I hope that your mom is able to take a deep breath for herself now (and you, as well). -J

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  13. Thank you for sharing , we all need to rlease , it is helpful.

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  14. what a difficult situation. i'm so glad a resolution is close at hand for you and your mother. i hope that it will be manageable and easier for her to live with - so that you can both come to terms with the emotions that come along with such pain.

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  15. I feel heavy heavy heared just reading this. I dont know you, so I dont know if giving you a tight hug from this far is the right thing to do. But everyone can do with a tight hug.
    I know something of what you say because I've had a granny who was rather ill for 4 years before she died. And my mom lived with her in the same room all those years. We were all there, but its not easy. And I also know about walking on eggshells with men in the house cause you never know what will anger them. No doubt now times have changed. mom is with me & we are living very happily together, but i know of memories.
    All will be well & there's no better healer than time. Your mom will find peace. so will you.

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  16. Terri, my deepest sympathies on this difficult time...or life. My father made my life miserable; the sad thing is, it affects us before we are old enough to even be aware of what is going on & how it is affecting us. I finally cut my father out of my life 3 years ago however my parents have been divorced for years. I have a son with Asperger's Syndrome and he was very violent and angry for years...it was like living on eggshells and I resented the fact that because he was my son I couldn't walk out on him. I maintained that anyone - ANYONE - else, I would have left.

    Be aware the affect your circumstances has on you and your mother and be patient with yourselves and the exhaustion that comes with the relentless distress and fatigue from dealing with the situation day after day.

    I enjoy reading your blog; I moved to New Brunswick from Alberta 5 months ago (lived just north of Edmonton). I miss Alberta but this place is pretty nice too.

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  17. I found your blog by accident and got caught up in reading about your father and the struggles he goes through as well as your mom and yourself. Just wanted to send you a big hug from Florida as I know you need it.

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  18. Hello, Terri,

    I am the primary caregiver for my 79 year old Dad who has Alzheimer's Disease and lives with me in North Carolina.

    I am writing a blog on my website that shows the lighter side of caregiving, and offers tips for
    caregivers.

    Please pass this link along to anyone you think may
    enjoy it.

    www.KnowItAlz.com

    Thanks,
    Kathy

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  19. Terri, you are so good with words, I hear you so clearly.

    I can relate to such a lot, as I mentioned before, I spent my childhood on eggshells because of drunken outbursts, my dad is now also ill, nowhere near as bad as yours though.
    With my dad it is depression, anxiety, two hip replacements, a back operation, the list seems to increase all the time and I find it hard to be sympathetic but at the same time I feel real pity.

    Racheal x

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