Facing Some Realities That Suck

dadmikecathie
Dad, Michael, and me.

My father has anoxic brain injuries from being unconscious so long and from his heart being unable to pump enough oxygen to his brain. The main artery…aka the widow-maker.. was completely calcified, and the doctor was unable to do anything at all with that part of Dad‘s heart. Out of 5 possible bypasses, only three were successful. Since his surgery in early October, Dad has struggled with waking up from anesthesia, pulmonary distresses including pneumonia, ICU psychosis, hallucinations, infections, bed sores, and a trachea. To say he’s one strong man is an understatement. He’s strong, but he is still human, and these traumas to his body have produced some sad consequences.

One of the things that really freaked me out while he was unconscious was how he kept moving his limbs constantly. Even though he was asleep, he seemed unable to get comfortable. When my mother had a stroke years ago, one of the things that we dealt with was her inability to get comfortable. When I saw this with my dad, I had a sinking feeling something had gone wrong with his brain. It would seem that I was right.

For all of the symptoms of anoxic brain injuries, you can click here. Below, I’ve outlined what I’m dealing with specifically with my father.

Cognitive Problems with Anoxia

  • Short-term memory loss. – Constantly, I have to answer questions repeatedly because Dad doesn’t remember asking me two minutes before.
  • Poorer performance in executive functions. – Little things like which eating utensil to use for pudding seems to be hard for him to process.
  • Anomia. This term means having difficulty using words or processing what words mean. There seemed to be a lot of this in the beginning, but I have noticed a marked improvement in Dad’s ability to communicate effectively lately. When he first woke up, even though he was speaking English, I couldn’t understand what he was trying to say.
  • Visual disturbances. The person with HAI may have trouble processing visual information. They may find it difficult to focus or they may reach for an object, but not be able to touch it because they are reaching in the wrong place. This seems to be rather severe.

Physical Problems with Anoxia

  • A lack of coordination.The person’s gait may be wobbly; they may weave or stagger like someone who has had too much alcohol. Dad simply can’t walk right now at all.
  • An inability to do common tasks.  The person may be unable to remember the sequence of common tasks like brushing the hair or drinking from a cup.

    Dad in the USMC
    Dad in the USMC
  • Movement disorders. The person may experience spasticity, rigidity, and myoclonus (muscle spasms). The patient may have involuntary movements, jerky movements, or trembling. This side of my family has a lot of instances of Huntington’s Disease, and Dad’s trembling is so severe, I had been really afraid he might have this disease. However, the trembling is most likely from the brain damage. He trembles a lot, even when he’s sleeping.
  • Quadriparesis. The person may experience weakness in all four limbs. Dad is weak as a day old kitten. Though still a strong man, his strength is markedly decreased.
  • Headaches. Anoxic brain injury can also cause confusion, depression, hallucinations, delusions, personality changes (such as increased irritability), and the inability to concentrate. This is the symptom that causes me so much sadness. The change in personality.

Years ago, my mother had a series of severe strokes that left her completely incapacitated. I could handle almost any aspect of the trauma except the change in her personality. I’ve worked in nursing homes, and I’m fully aware that strokes and brain injuries can change a personality so completely, even the physical appearance of a person can become unrecognizable. It took a little while for me to realize that my mother from childhood was essentially gone, and this different personality had taken her place. Luckily, my mother is sweet and gentle, and even with the changes, it wasn’t a great hardship to be around her. I’ve been around some people who become so violent and agitated, it was no pleasure to visit with them at all.

Dad was state champion arm wrestler
Dad was state champion arm wrestler

Since my father woke up, I can see clearly that his personality is a bit altered. He is more agitated, easily frustrated, and quicker to lash out verbally. Please don’t get me wrong. I’m very happy my father has awakened, but there is a seed of dread in the pit of my stomach that this version of him may become the norm. Unlike my mother, the damage isn’t nearly as great, but it is definitely there.

It’s been two months now on a roller-coaster ride for Dad, and to say we are all exhausted would just be a true statement. Dad is ready to get out of the hospital and get on with his life, and he constantly plies me with that desire whether I’m physically there in his room, or by telephone, day and night. The hospital has a person, called a sitter, that stays by his bedside constantly 24/7 because the damage in his brain causes him to be unable to get comfortable, and he sits, stands, lies down constantly, except when given sleeping medication. Because of the weakness in his limbs and the continual trembling, he needs someone there to keep him from falling. The sitters are always exhausted when I visit, and I can’t do it very long either. I just want to weep at the thought of never being able to be comfortable in my own body.

When I went through all of this with my mother, I was traumatized constantly with some of the awful side problems that would arise. I had to care for my mother

My mom
My mom

physically like she was a small baby, and on numerous occasions, the frustration and anger she felt would be taken out on me. I would have my feelings hurt by something she said, or physically hurt when she would strike out at me. Yet, knowing that she simply was not able to control any of these reactions, there was no way I could be mad at her. When I was in the motorcycle accident, and she was put in a nursing home, I felt an overwhelming guilt when I returned home because I felt relieved that others were taking over her care. This is an emotional hell I wouldn’t wish on my worst enemy.

It took a while for me to accept that I’m not able to care for someone in this kind of manner, especially a parent. There are people, like a fellow blogger named Terry, who seem to be the stuff angels are made from. She has taken care of a sick brother for years and years and years. I, on the other hand, am faced with the sad truth that I’m not emotionally, physically, or spiritually equipped to do this for either of my parents.

It is starting to become sadly clear that if Dad is not able to be rehabilitated, he will need 24 hour care. Unlike my tiny mother, my father is much bigger and much stronger than her. He’s lived a life of such complete independence, he simply has no idea how to rely on anyone else, and he has no intention of starting to now. His temperament is more like mine, and we both have a long way to go before anyone can describe us as patient and long-suffering. We both can be snarky when irritated, and this doesn’t bode well for either of us.

It has become rather hard to want to visit him lately, not just for me but for other family members as well. It is hard to tell him no, he can’t leave right this minute. it is hard to hear him rage about secret conspiracies to kill him. It is hard to help him sit, stand, and lie down over and over and over. It is hard to hear him say we are disappointments to him, or that he hates us. I’ve done this with Mom. I know not to take it personally. Somehow, though, it still really hurts.

Yesterday was Thanksgiving, and though I really enjoyed spending time with Aunt Debbie and my cousin Matthew, in the back of my mind, I was sort of dreading going to the hospital. Of everyone, I’m the one who seems to be able to curb Dad’s meanness and general irritability, but it does wear on me. I have to be rather short with him right back when he starts to head down a troubled, angry road. I have to threaten to go home if he can’t be nicer, and that always works. Still, I feel horrible doing it. Somehow, it feels so disrespectful and insensitive. However, I can’t have him saying hateful things to Debbie and Rebekkah. They take it way too personal. After one or two verbal skirmishes, he settled down, and we had an enjoyable few hours together. His sense of humor is in tact, and he made me and his sitter, whom he calls Giles, laugh. When I got up to leave, he didn’t give me the hard time he usually does, and it made me feel a little ray of hope that maybe  all of this isn’t so permanent.

My grandfather holding my dad.
My grandfather holding my dad.

So, all in all, yes. Dad is improving, but how much will he regain of himself is still to be determined. I pray for a complete recovery, and for God’s guidance in what I should do for him. I am a firm believer that the quality of one’s life far outweighs the quantity, and I just am unable to see my dad being in a nursing home. I am thankful that he’s able to remember me, and that his sense of humor is still intact. I just hope the rest of him will follow suit.

Thank you all for your prayers!

~ Bird

 

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Author: Catherine aka "Bird"

Marketing Specialist Recruiter Freelance Writer Blogger

7 thoughts on “Facing Some Realities That Suck”

  1. it’s never easy seeing the ones you love suffer, but i’ve seen miracles, and when i say miracles, you should check out some of the images i have posted, the man in the sky is real, and God Most high listens, sometimes he needs angels, hope your day ends well, amen

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  2. Wow. I think I could’ve written almost exactly the same post a few short months ago about my mother. Instead of Huntington’s, in our family it’s Parkinson’s Disease, and so some of Mom’s anoxia symptoms were hard to tell apart from the PD ones since she *does* have that already. But the personality things, the social stresses, the unlearning and relearning trials and all of that are, apparently, rather universal. I’m happy to say that my mom seems to have recovered some of her functions, her ‘real’ personality and even glints of her sense of humor at times.

    But at 79 and having had Parkinson’s for decades and a few other health problems as well (long before she had the multiple back and hip problems, surgeries, metal installations and recovery issues), she can no longer quite grasp that no matter how much she recovers, and even no matter how committed she is to her rehab, it won’t turn her back into an active 40-year-old. That’s the remaining problem we’ll never solve, I suspect, and to be fair, I know that all of the family secretly wishes she could be that young and active again too, because yes, like you and your family, we have all of those specters looming over us of long term personality change, depression (parents’ *and* ours) over the situation, lack of mobility and freedom of choice, and more.

    What’s vastly different nowadays than in generations past is that we have reached an era where it’s possible to keep people alive through so much more than anyone would’ve survived before, but we can’t necessarily keep them happy, occupied, mobile, productive or pain-free, and very few of us have the training or skills to care for such disability, let alone the financial resources to hire such skilled companions and caregivers. Anyone who tries to give me guilt about not taking my mom in and caring for her at home is thinking of a past era when that was possible in large part because people accepted death as a normal reality; now, if you don’t take extreme measures to prevent and cure everything that comes down the pike, you’re seen as not caring or actively killing your loved ones, when in times past they would simply have died outright because the meds and techniques were unavailable/insufficient or they’d’ve faded slowly and finally stopped eating, drinking, and so forth, dying just the same but more gradually. I’m afraid we have it pretty backward when it comes to medicine, if what we are doing is preserving and lengthening true Old Age without compensating for it with better quality of life for all parties.

    I promise that this isn’t meant to drag you down further–I think I know exactly how you feel! But I hope it’s helpful to you to know that you’re not alone, that you’re treating your father and his situation with respect and compassion, and that others like me are not only sympathetic to your plight but keeping you in our hearts and minds and prayers as well, because we *do* care.

    Peace.
    Kathryn

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    1. On the contrary, Kathryn, your comment gives me such peace! My mother was a huge lesson to me that just because you can save a life doesn’t always mean you should. Dad was not a Christian, and I worried about his soul. Right now, he’s wrestling with his Maker, so I know it was right to save him. But as things seem to progressively get worse for him, I’m not inclined to move heaven and earth to just keep him alive. He HATES being helpless. He HATES feeling weak and old. And a nursing home would be the equivalent of hell on earth for him. I can’t even imagine that. I’ll do the right thing for my father, despite what people may think of my methods, but caring for him at home if he is unable to care for himself at all will not be one of them. He’d hate that just as much. I’m asking the Lord what to do, and I’m sure to get an answer. In the meantime, I’m grieving a little and trying to document his stories as fast as possible in case he be short for this world, like we are all beginning to realize is probable. Thank you! Your words helped tremendously!

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  3. My heart goes out to you as I went through very similar situation with my Mom… She had brain surgery re aneurysm and we were told that as the scar tissue developed there would be gradual deterioration re physical and very ‘mental’…changes. Her memory faded after going through some of what you relate… mixup up words, forgetting word, and finally not speaking at all… physically she deteriorated especially after she broke her hip and she didn’t have the capability to learn again how to walk…

    I will of course lift him and you and family in prayer…. and hope that he has enough times of clarity of thought that the time is not too difficult when you are with him… Based on your description I cannot see him being able to return home for you to be able to care for…. He hopefully will be able to handle whatever decision is needed…..May you have peace in the midst of this ‘storm’…. Diane xoxo

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  4. Bird, having walked the road of caring for aging parents, both of whom have passed on, I related to what you are experiencing with your dad. Praying for you and your family as you walk this walk. Everyday is filled with God’s blessings even in the midst of the storms of our lives. May His blessings be evident to you along each step of this path and may the arms of Jesus carry you when you are too tired and weary to move and may His love comfort you when your heart aches.

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  5. To follow from what Kathryn was saying, I believe our whole culture has changed from the days when extended families lived together or practically in the same street, and caring for the elderly in our families was a burden shared among many siblings, and even close neighbours. Now we live solitary lives (like cats instead of lions), and are unable to support each other in such times. Guilt is a big problem since we all think (rightly) that we should do our best for those who gave us theirs, but there are limits. My father degenerated with Alzheimer’s and mum was getting more frustrated with the lack of help she was supposed to be getting, caring for him at home. After nearly 50 years together, she couldn’t give up on him, until that day he ended up in casualty after getting into a bath with no plug and couldn’t get back out again. That was when my brother and I had the chat and agreed he was NOT going home again. Mum could NOT cope and we had to make the decision for her. She just sighed and said ‘OK’ when I told her what we’d decided – I knew she was relieved. If someone decides for you to alleviate your burden, accept it with thanks. I’ll pray you have someone, anyone, who can make the awful decision to ‘back away’ for you.

    And my father also had turned his back on his maker at a very young age. We never really discussed religion as it always led to arguments. I planned to go and see him one Saturday morning and ask him about his early faith, since Mum said he was more lucid in the mornings (we always suspected his meds had something to do with it). I didn’t make it… that evening he passed away.

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