Illness

Grief, Parkinson's Disease, Relationships

Almost everyone experiences it, but now it’s my turn to know what it’s like. As of this writing, my mom died a little over two weeks ago. She had Parkinson’s Disease for thirteen years and finally succumbed to it. My family (but mostly my brother) and I watched her go from a functioning person to someone who was completely debilitated, and then mostly unconscious. In a sense we had been mourning her for many years. Each time she would decline, mostly mentally because Parkinson’s comes with its own horrible dementia, we would grieve.

And each time it hurt to see the person I once knew so well, degrade, and leave us a little more. First, being unable to remember things, then to delusions and hallucinations, then to the mind of a small child, and finally to someone who slept about twenty-three and a half hours a day and couldn’t communicate. Physically, she went from walking to using a walker then to a wheelchair and finally bed bound. The end stage of the disease is being unable to swallow, which gradually happened, along with losing whatever appetite she had for her pureed meals. She came close to dying multiple times due to various infections and sepsis, and I was convinced that ultimately would be her demise, but she managed to recover each time, although not fully in her brain.

So, when one of the nurses decided to call hospice (for the second time) because my mom had trouble swallowing and didn’t want to eat, I wondered, could it really be the end this time? Part of me didn’t think so, she had hung in there for so long. But you can’t stop eating or drinking for too long before it all catches up with you, and it did for her. Within a week’s time, she was on the brink, and we were told that she had less than twenty-four hours. My brother was at her bedside, my other brother was called, and I picked up my daughter from a friend’s house, planning to go there straight after. But it was too late. She left us late that morning, for the final time.

And it’s this finality that we all grapple with in grief – they are not coming back, ever. Even though I went to the nursing facility and saw her expired, peaceful body lying on her bed, so obviously without life in it anymore, I was in shock that it finally happened (and still am to a degree). I now realize that there was always this small, fictional hope in the recesses of my realistic mind, my own childish fantasy, that maybe she’d get better someday. Maybe some incredible medical innovation would happen and she would walk out of there. I knew in my brain, and in a large part of my heart, that this was completely illogical and would never happen. I knew this, but that tiny, impossible hope continued on anyway. Now, it couldn’t. Knowing that is hard to accept.

The hole that’s left behind is hard too. It’s like a chunk of yourself has been removed and it can’t be replaced. Time will dull the pain of the loss and that chunk may fill in a little, but I know that it can never be whole again.

Right now, it’s the the little things I notice that signal her absence – not needing to leave my phone on at night because the nursing facility may call, not working my visits with her into my schedule, not having that topic of discussion with my brother when we have our weekly phone call. That’s all done, over.

And I wouldn’t be honest if I didn’t admit that there is a great sense of relief in that. These years, especially the last five, have been so heart-wrenching and full of sadness. Watching someone decline in that way is a slow torture. My kids have no great memories of their grandmother and in the last couple years, we had to visit her at her window (due to Covid) and, if she could see us at all through her constant sleep, it was in masks. How can I not feel grateful that it’s now over? That’s from my perspective. For her, I can’t imagine what the last thirteen years were like and I never heard her complain once about her disease. I can only hope that this last period of her life was free of pain and excessive suffering. In the end, that’s what we all hope for.

May she rest in peace.

Linda Laidlaw

Health & Diet, Illness

virusThe title says it all, I caught COVID-19 (it was well over a month ago so don’t worry if I’ve been in your presence lately). Yes, I was just as surprised as you are. I live in California, which is a hotbed of cases, but where I live in NorCal, there haven’t been too many, especially in my county in the sticks. And, yes, I took the precautions we’re all told to take: wear the mask, hand sanitize, wash my hands, avoid touching my face, etc, etc, but I caught it anyway.

Everyone has been so curious about my experience, asking questions upon questions. My guess as to why is because 1) they don’t know many people who have had it yet (at least not that they know of), and 2) they want to know the details for if/when they catch it. So, here’s my rundown.

I went shopping in a nearby town on a Sunday, an area much busier and more populated than our small town. I went to three stores. I’m pretty certain that I picked it up somewhere during that time. If I count back the days, it makes the most sense. I felt symptoms four days later. I was driving back from visiting my husband’s family while he and other family members went on a fishing trip.

During the two-hour ride home I started to feel “off,” that crappy feeling when you know that you’re catching something. My chest felt tight too, like I had a weight on it. When I got home the symptoms continued. I took my temperature – 99. I am almost always in the low 98 range, so I was alarmed, but tried to reason that I was probably fine. How could I catch it?

That night I slept poorly. I woke up every hour or so. At midnight I took my temperature again, 101. I started to panic. “Oh no, I have it!” I thought, and struggled to get a little more sleep in the wee hours of the morning.

I felt bad the rest of the day, mainly fatigue and the overwhelming dread of knowing I’m in for some kind of illness. That night I had a weird headache in the back of my skull and my fever came back again. The next day I called my doctor and we had a video appointment. I relayed my symptoms: fatigue, slight sore throat, slight heaviness in my chest, headache. She told me that my symptoms may or may not be the virus. She’s seen patients with those symptoms who tested negative and some who tested positive. Basically, a non-answer. She did recommend I get tested, however, and thankfully I was able to do it the next day, on a weekend. The test results would take 24-72 hours.

In the meantime, I sat like a zombie on the couch and watched TV. I felt bad, but not bad enough to sleep. I delayed my husband returning so no one would be unnecessarily exposed. Twenty-four hours after my test, I got the result – “virus detected.” I was dismayed, but not completely surprised. I had most of the symptoms listed (minus the stomach upset and lack of sense of smell).

I then went through the uncomfortable process of telling people I recently saw that I was positive for COVID. It was awkward and I felt terrible, like confessing that I exposed them to a possible life-threatening carcinogen. Thankfully, they all took it well. Some of them got tested, all came back negative.

Most of my symptoms soon went away except for congestion in my nose, and then, five days after my initial symptoms, I lost my taste and smell completely. That morning I had my usual tea. It is normally fragrant and flavorful, but not that morning. It had no taste whatsoever; hot water had more flavor. I couldn’t smell it either. I then stuck my nose in the pot of freshly brewed coffee – nothing.

Over the next week, I dealt with tasting nothing, smelling nothing, and worrying that I would be stuck that way. You don’t realize how much these two senses are a part of your life until they’re suddenly gone. My husband would talk about what to eat for dinner. I didn’t care. I couldn’t taste it anyway. Why waste delicious food on me? It was devoid of anything rewarding for my taste buds. Comfort food, a sugary treat, a great cup of coffee – all of it was pointless.

A week went by and I could slowly taste salty things, then sweet. After two weeks, both senses were at roughly 65%. I’m still waiting for it to return fully. I’m really hoping that it will. Yes, I know, I could be on a respirator in ICU fighting for life; or I could be a “long hauler,” dealing with daily debilitating symptoms. I’m aware that my minor ailment isn’t as serious, but this is my experience with the virus and yes, I’m thankful that I got through it all okay.

And my guess is that most people will too. But we don’t know who will and who won’t. And that’s the scary part.

(My family requested that I leave them out of this post so, respectfully, I am.)

Grief, Illness, Self-awareness

ginger
Old Ginger – when he was nice.

Last week, the vet put our old goat down. He had reached the point where no food interested him, his arthritic bones ached him to the point of limping, and he was ready to move on to the next plane. We weren’t sure of his age, but the vet commented that he outlived his teeth (he only had about two left). We got him about six years ago with his buddy, Maggie, who has passed on last winter. And yet, Ginger kept hanging in there. He had a severe liver infection over the winter that nearly killed him, but he recuperated on antibiotics and kept going, despite his body continuing to deteriorate.

When we first got Ginger he was generally a jerk. He would threaten to head butt my husband (a sign of dominance) and would lean over the fence if my son was nearby and pull his hair with his teeth! My son learned to fear Ginger and my husband mostly disliked him (especially when he severely sprained his ankle because of the goat).

I’ve generally had an okay relationship with the grouchy goat. I tried to treat him kindly and in the end, he usually just wanted pets (some goats are just like dogs who want attention). Of course, I didn’t appreciate him pulling my son’s hair and I always warned my kids and their friends to stay out of the pasture with the goats, but generally, he was an “okay goat” in my mind (think of a family pet that you weren’t very close to, but tolerated well enough).

Recently, in his elderly years, he became much nicer, to people anyway. Maybe he didn’t have the energy or the will to try and be dominant, maybe he realized that it doesn’t really matter, or possibly he knew that he was old and vulnerable and just couldn’t be on top anymore. Whatever the reason, Ginger had softened. Almost anyone could approach him in the last few months and he would just look to see what you might have in your pocket for a snack, or an ear scratch would often suffice.

Do we all soften like Ginger with age? I watch my father interact with my own children. He is a much more gentle and understanding grandfather to them than he was as father to my siblings and me. He watched his own father do the same thing. My own grandfather was sweet and kind, and always nice to us grandkids. My dad has different memories, which is probably typical of any parent dealing with his own children versus grandchildren. Maybe, as we age, we realize how fleeting it all is, and that kids will be kids for a relatively short time.

Enjoying apples.
Enjoying the moment – with apples.

Still, it seems like a choice for most people as they get older. Will someone realize that all of the worries they once had aren’t as important as they thought and just living each day peacefully and contentedly is the path to be on, or, as we all have seen, do they choose to be angry, cursing any new trend, and repeating how good “things used to be,” and generally being, well, a jerk like the younger Ginger was?

I’m hoping to take my lesson from the old Ginger, regardless of why he became nicer and realized that the fight isn’t worth it, he changed from an “ornery old goat” to a “relatively nice old goat.” I’ll go with that description for myself, human or otherwise.

Fear, Grief, Parkinson's Disease

Anyone who has read my previous post about my mom (Letting Go of Knowing Why When Loved Ones are Sick) knows that she has Parkinson’s disease (PD to those of us now familiar with it). PD has all the terrible symptoms  one thinks of: with tremors throughout her body and “freezing up,” or the inability to walk because that connection from her brain to her feet just won’t work sometimes. But the hardest part of this illness, at least to my brother and me, is the dementia and the decline of her cognitive functioning. Like Alzheimer’s, Parkinson’s causes a person’s mind to slowly slip away. Lately, it’s become worse. The progression of the disease, along with a urinary tract infection that led to sepsis and put her in the hospital, seems to have made her “good days” become far fewer than her “bad days,” when she mumbles incoherently or thinks her walker is the portable commode.

My brother and I usually try to make light of her condition, attempting to find the humor in things, like when she kept referring to the physical therapist as the “power girl” (“when is the power girl coming over?”) or when she asked me very seriously if I had in my “possession two pounds of white See’s candy that looks like pajamas,” (I answered “No, sorry, I don’t” to that one). We don’t laugh at her or her condition, but we cope by finding humor in the absurdity of it all and marveling at the frightening and amazing human brain.

Yet, in other instances, we need to talk her off a metaphorical ledge and try to bring her into our current reality, like when she calls very concerned saying, “Dad died, will you take me to the funeral?” and I have to tell her that her dad died over twenty-five years ago. Then when she questions “well, who died?” and I tell her “no one died, Mom, you’re okay,” she is never fully reassured by this, and neither am I. We don’t know how we can help her, and unfortunately, there is not much we can do at this point, except talk to her and visit her. This brings me to the title of this post, “Progressive Disease Never Gets Easier – and I’m a Wimp,” because it is becoming harder and harder to visit her and try to act like everything is normal and okay while I’m there.  In my previous post I wrote, “So, instead, we will continue to visit her regardless of her current state that day. We’ll stick by her, even when the disease takes it all, not knowing the reason why and just letting the idea of fair gmom_julieo… As we painfully watch we will hope that our presence will make it easier on my mom, the one, in the end, who is suffering the most.” Those words seem hypocritical now because I don’t look forward to seeing her and it’s hard to show-up with a smile. With two busy young kids in sports and other activities it is easy to let time slip by with practices or games and realize that I have not visited my mom in awhile. That fact makes me feel guilty, which makes me avoid the visit, which makes me guiltier, and so it goes.

We’ve all seen or read about families who leave their parents or loved ones to rot away in a nursing home or retirement place, never visiting, or doing so once a year for twenty minutes. I always thought they were uncaring jerks and questioned how people could do that to “their own parents!” but maybe now I see why a little more clearly. Maybe it’s just too hard and they can’t face seeing their loved one turn from a “normal” person to a nearly unrecognizable shell of who they once were. It’s agonizing to watch and too painful to accept, so they don’t. They hide, pop up once a year, and retreat back to their own world where this reality doesn’t exist. I get it and oftentimes would like to do the same, but I don’t. And yet, I could do more.  My brother calls my mom once a day and drives up to visit her once a month regardless of what is going on in his life. His strength and fortitude far exceed mine.

But pain is no excuse, at least not a good one. Just because it’s difficult does not mean it’s acceptable to avoid it. The truth in this situation is that I can’t come to a full acceptance of her progressive disease because the disease keeps changing, so once I accept it, the disease has progressed and my mom can’t remember what day it is; a short time later, I must now accept that she thinks See’s candy looks like pajamas. It does not stop until the disease stops, and then she is no longer here. There is no good answer or solution; and it seems near impossible to look for a bright side or some positive way to view it all. Sometimes, I’m realizing, it’s best to keep your head down and keep moving forward, to show-up while staying the course, be it a progressive disease or a marathon with an unknown end.

Grief, Illness, Kids, Parenting

My mom has Parkinson’s disease, yes that same one as Michael J Fox, and unless you read his books or know someone who has it, most may not realize what a terrible disease it is. It’s more than tremors or a shaky hand reaching for something. It will make my mom fall apart in the middle of a store, unable to move, frozen in her tracks, and she will be forced to take tiny baby steps in a confused state as people whip past her, annoyed at this slow old lady. It’s the realization that she now wets the bed every night because the disease is forcing her bladder to contract, so while she sleeps she unknowingly urinates. It’s slowly taking her mind and memories away due to the dementia side of the illness. And someday, as the progressive disease takes its toll, she will be unable to do anything on her own: eat, walk, talk, use the bathroom, enjoy her grandchildren, the disease will have taken it all.

My husband, my brother, and I watch this progression grimly. Rationally we understand the disease, it slowly cuts off her serotonin and other neurotransmitters so that the needed connections to move don’t readily work (that is putting it very simply). You lose control over that connection in which your brain tells your body what to do. We also know that there is no cure; medications can only help with the symptoms of the disease as it gets gradually worse. And the kicker is that the long term side effect of the main medication she takes ultimately leads to uncontrollable movements – just like her disease.

When she first got diagnosed I knew almost nothing about Parkinson’s disease. Like most people, I just thought it would make her hand shaky as she reached for the salt at the dinner table. Since I always think that understanding something and arming oneself with knowledge is the best route, I researched the disease. I found out what happens in the brain and what will ultimately happen as time goes by. It was a difficult read. As I grappled with her doomed fate, I cried a lot, and asked “Why? Why is this happening to her?” This is a woman who wouldn’t hurt a soul. She was a bank teller, raised her kids, learned to live her own life after divorce, and was always present for her family – why is something so terrible happening to her, I questioned. Then, I inevitably went through the “It’s not fair!” side of it, because it wasn’t. Why is my mom, a nice person, a model (more or less) human being, sentenced to this disease when child-molesting perverts, rapists, and jerks who scam old people get to lead healthy lives? It’s not fair! I angrily thought to myself.

And, no, it isn’t fair. That is true. But this isn’t about what is fair. That is just my way of caring and being angry about her illness. I know there isn’t some being in the universe, handing out punishments to bad people and rewarding the good. That is obvious by all the pain and anguish in the world. So, fair has nothing to do with it. And in the end, neither does the why. Why does she have this disease, why did she get it instead of someone else? It doesn’t matter why she has it, she does. And someone else has it too, approximately one million people in the US alone have Parkinson’s disease.

So, as hard as it is, I need to let these things go. Whenever we are faced with adversity or pain or tragedy, we often point to the why (and the government and news point to the who – as in, who is to blame for this). Then when the why (or who) isn’t answered, or even if it is, we go to the fairness of it all – and when is it ever fair? In the midst of something terrible nothing seems fair.

So I have learned to let these two things go most days and just accept that she has a terminal disease, and it’s not going away. Some days are good for her, others aren’t,

My mom in the '80's, before her disease.
My mom in the ’80’s, before her disease.

and it will get worse, but we are dealing with that as it happens. That is all. Is that easy? Definitely not. No one can watch someone get worse in tiny increments and think, “oh it’s okay, it will be okay” because it’s not. I cannot hide behind the false idea that “she’ll be okay” because she won’t.

The hard part lately is when my eight-year-old daughter said, “I wish we could take Nana’s disease and give it to someone else.”   It made me realize how my very-aware daughter is witnessing this too, and how difficult it must be for her as well. I just said, “I know, I understand, but we can’t.” “But it’s not fair!” she said emphatically. “No, it isn’t,” I said, “I agree, but it’s the disease she has.”  I can’t fix it or shield my daughter from her grandmother’s disease. None of us can. So, instead, we will continue to visit her regardless of her current state that day. We’ll stick by her, even when the disease takes it all, not knowing the reason why and just letting the idea of fair go. It doesn’t have a place here even if we want it to.  As we painfully watch we will hope that our presence will make it easier on my mom, the one, in the end, who is suffering the most.