Sunday, 1 August 2021

How It's Going, Part Two of Infinity

Hello, my fine people.

I thought you might like an update on my mom and her geriatric assessment that took place last week.

I wish I could tell you what the assessment results were, but that report has to go to her family doctor first, and is then released only if she requests it. But I've been told the family doctors may relax those rules in the interest of communication and making good choices for the patient.

Mom had reluctantly agreed to have a health care worker come in to her home to give her her pills, but when the time came for her to give her official permission, she balked. And it wasn't worth it to me to fight it.

She is quite concerned about Covid, or at least that is the reason she has given for a lot of the preferences she expresses. She would go to the grocery store every day if she had transportation, but she won't have anyone in her house.

But we've had a slow breakthrough, if there's such a thing, on the new car decision - she told me yesterday that she misses her car and would like to have another, but then she thinks to herself, "It's so much easier for Donkey to drive me places!"

So, even though my heart sank a little at the thought of being caught in the role of chauffeur, it's better than having her drive.

And maybe it will eventually lead to her accepting other people driving her, if necessary.

My impression from the geriatric clinician who conducted her assessment is that nothing will change in Mom's living arrangements until she gets much worse. Bearing in mind that she could not actually release the report to me, this was only my impression, based on her careful choice of words when I asked about "care for the caregiver" (me) and explained why I was asking.

It wasn't unexpected, but it was still hard to hear. She said that if a patient refuses outside help, the family may have to accept a certain amount of risk, and things may have to get considerably worse before anything can change. She gave the example of her own farming grandmother, who finally got to the stage where she couldn't understand that the caregivers were caregivers, and instead thought they were farm workers who had no other place to stay, and thus allowed them to stay in her home.

I am resigned to this now, but only because I have done a lot of pondering on how to balance my needs and my mother's needs. I have thought about boundaries, and responsibility, and also the sad fact that my help will likely never be enough for her, given her memory loss, and the end result of that will be an unhappy mother, no matter how much I do.

So, instead of an intensely unhappy but short period of my mother railing against suddenly being "put" into a nursing home, I will be facing a long slide into unhappiness for her, coupled with me feeling unappreciated and unfairly burdened. I expect there will be many moments of frustration for both of us, but it seems there is no easy choice. And to be honest, in many ways I don't think she needs to be in a nursing home yet, I just need to not have full responsibility for every aspect of her life where she does need help.

Two weeks ago, I think my head would have exploded if anyone had had the absolute gall to point out that I can't change my situation, I can only change my response to the situation. I've never liked that little aphorism, and I think I know why. Because I didn't understand it.

Today? I can see how that works. I cannot change the situation, true. But changing my response to the situation doesn't mean just gritting my teeth and smiling while I run faster and faster.

What changing my response actually means, at least to me, is to have my boundaries firmly defined in my own head, and then doing - or not doing - the things that take those boundaries into consideration.

For example, I will visit her daily with her pills, because I think that's an important basic function to maintain her health, and as I said she will not accept anyone else's help (yet!). But I will not take her grocery shopping every day just because she'd like to get out, partly because I know the daily pill visits are going to deplete me, and partly because I have offered her other ways to socialize and she will not take them.

This may seem so obvious to the average observer, but it's been hard-earned wisdom for me. I am a people-pleaser, and a person who takes my family responsibilities very seriously. And I tend to push myself to the wall, and then even further, before I realize I can't go on. I need to set those boundaries so I won't reach that point of desperation.

And so . . . . . . on we go . . . with a rather steep learning curve for both of us.

*****

In other news, I have met my most urgent work deadlines, so I am enjoying a bit of a break for a couple of days. As I write this, it is past suppertime and I haven't done a thing all day except loaf around and listen to the peace and quiet. It's one of my favourite sounds.

Yesterday I learned how to get gas in a gas can for the lawnmower. I kept expecting the thing to explode, but all was well. The trick is to avoid igniting the gas vapours with either obvious things like an open flame, or unobvious things, like a spark from static electricity in yourself or the plastic gas container, or from a hot vehicle nearby. Thank goodness for the internet, which has the answer to just about anything. 

The grass hasn't grown much the last few weeks, which is lucky for me because I didn't have time to cut it anyhow. Our summer has been surprisingly temperate. This is not what we've come to expect from our summers; it feels more like the summers we had twenty or thirty years ago. It makes me feel guilty, given that so many other areas are clearly suffering from the changing climate, enduring fires, drought, record-breaking heat, and flooding. Beyond the guilt, though (which is not a useful response to begin with), I feel profound relief that I haven't had to add relentlessly difficult weather to what feels like an already heavy burden on me this summer.

Small mercies are sometimes not so small.

***** 

How are things with you, my friends? I'm here, and I'm listening. 

And lounging.

If I were a dog, and if there two of me, this is what it would look like.



 So fire away. I'm all ears.



 

Tuesday, 20 July 2021

How It's Going

Hello, my people.

Time flies when you're having fun, so they say.

"They" are wrong. I haven't been having fun at all, but, despite that, some of my precious remaining time as a living, functioning person has disappeared anyhow.

I'm trying to meet work deadlines.  One of the offices where I have to work in person has no air conditioning and the weather has gotten hot here, so I have to go at times I wouldn't otherwise be even awake. Then I come home and sleep during the day. Crikey. At least that job will end in a couple of weeks.

I'm stressed by my mother's problems, and have been to see my own doctor about my blood pressure and other issues. He recommended grief counselling, which I think is actually a pretty good idea because I think I'm kind of stuck, but then the conversation veered away from how to handle the stress I'm feeling and we never did get back to it.

My mother is declining further, cognitively speaking. She is mixing up her pills and I'm finding them in her clothing, in her purse, in the cushions of her chair, on the floor, etc. The pharmacy has blister-packed them but that doesn't stop her, it only slows her down. I've had to take the medications home with me, which therefore requires me to bring her pills to her every day. She is still talking seriously about getting a new car, and her geriatric assessment has been postponed by over a week. She feels she is doing very well and still has all her wits about her, quote/unquote. I do not feel that, at all, at all.

I was hanging on by my fingernails before; now I am basically doing the mid-air, leg-cycling thing that happens in the cartoons where someone runs off a cliff and keeps running until they realize there's no ground under them anymore. I haven't started the rapid downwards whoosh yet, but I feel it's only a matter of time.

I've been watching some YouTube videos on dealing with dementia as a caregiver, and that has been a little bit helpful. I've also developed some of my own methods of dealing with Mom. Number 1 is that if logic is not working, hey, guess what, more logic won't work either; it just sends my blood pressure through the roof. Number 2 is that I can't wrestle her to the ground and make her take her pills, and I can't hide them in her food like I do for our cat, so taking her meds has to be her choice and I have to let go of trying to control that. If she ends up with health problems from not taking meds, that's a risk I have to be willing to live with.

If any of you have any other tips, I'm all ears.

Moving on to lighter topics, I made an impulse buy last week. It was out of character for me to impulse-buy, but sometimes you just have to go with your inner voice. My inner voice was telling me this was the mug for me. For the record, I've only ever bought one other mug for myself in my whole life, and I don't drink coffee or tea or hot chocolate, and I don't like to drink cold beverages from a mug, so I'll probably use it to hold pens.

(If Laurie or anyone else with vision issues is reading, the mug says: I got so much procrastinating done today. I think this describes most of my days)

 


 

Last week these fawns were snoozing in my back yard. I've noticed that when there are two or more deer resting at the same time, they position themselves back to back. Smart deer! And they seem to learn this at a young age.


 

And this buck was resting by himself, on a different day. His antlers are growing. He was very laid back and his eyes were drifting shut repeatedly.


A couple of posts ago (here), I included a picture of one of our cats, Meredith.

Blogger Bonnie, from It Seems Like Only Yesterday, herself the servant of two beautiful cats, asked for a picture of our other cat, Lucy.

This week, Lucy deigned to pose for me.

No, she didn't. I took the picture without permission and she will likely sue me for it. That's just the kind of girl she is. But she has lovely eyes, doesn't she? And a delightful little pink nose. Which is right above her cobra-like fangs. But we won't ruin the mood with that little detail.


I've been doing a miniscule amount of gardening, as I usually do in mid-July, when the transplants I bought in early June are on their last legs and I have to get them into bigger pots or into the ground before they die.

Here is Frog with his gardening tools and little plant. This is a difficult planter to work with because the place where the earth goes is so small and oddly shaped, and the earth dries out so fast, but this little succulent is what I found to fit in it this year.


I rescued some transplants from the clutches of the earwigs and stuck them in a pot that's nicer than the actual plants are.



Lastly, a chalk drawing of "V for Victory" fingers a peace sign (thanks, Janie Junebug!) I came across recently. Hardly anyone draws on the sidewalks here and this doesn't really look like a child's drawing, so I'm curious who did it. 


We can't finish without a funny, right? (In case the caption doesn't get translated into sound for those with vision loss, it shows a take-out mug with "cark" written on it, and the comment, "I said my name was Marc with a "c" ...)

This is not my name (just to be clear) but it made me wonder: Have you ever had your name misspelled when you've ordered take-out? Or do you even give them your real name? I remember someone telling us years ago that they never gave their real name in a take-out pizza place because so many people in our area have the same last name (hint: Scottish settlers make for a lot of MacDonald's still living here).

I hope you're having a good week, my friends. If time is flying past you, I hope it's because you truly are having fun.




Sunday, 4 July 2021

Still Complaining

Hello again, my bloggy friends.

One of the things I have been learning about grief is that it does not follow a neat path to recovery.

I'd read about that, and thought it made sense, but I hadn't really understood it. I still thought I'd progress in a relatively orderly way from feeling terrible to feeling like I was ready to live again.

Instead, it's been a meandering path, sometimes forging ahead, sometimes looping back to find myself repeating part of the path over and over, sometimes returning to the early days of numbness and disbelief, or the later days of feeling physically weighed down with sadness and emptiness.

Some days I feel like writing here of normal things, and just as quickly I am back under a cloud again.

I guess what I'm trying to say is that I don't think there will ever be a good time to start posting again, because my mood is so variable. So I'm just going to post anyway, with the hope that you will understand if my writing goes back and forth between okay and not okay.

*****

My husband and I did a lot of jigsaw puzzles in 2020 after everything shut down because of Covid. It was a comforting distraction from the world's problems in general and our problems in particular.

Usually the process started with him doing the outside frame, then both of us doing segments of the interior, until we were completely done. I'd then take a photo of the finished puzzle, break it up into the box, wipe down the table, and set out a new puzzle for him to start. As my husband became more and more ill, he was less and less able to concentrate on anything for long. He had a lot of back pain which was caused - although we didn't know it at the time - from a metastasized tumour in his liver which was pressing on a nerve in his back. Still, between us we managed to finish a large stack of puzzles.

The last one we did started out the same. My husband picked out the pieces of the frame and started to put them together. And then, just like that, he stopped. I finished the rest, hoping every day that he would be able to do a few pieces, but he couldn't. I was glad when it was done and broken down and put away. I still have two uncompleted puzzles in the closet and cannot bear to start them. I saw one at the store yesterday and thought, maybe - just maybe - a new puzzle wouldn't have the same emotions attached as the ones I chose when my husband was still alive. I picked it up. And was flooded by sadness and regret and all the other difficult feelings and had to set it back down.

Maybe some day. But not yet.

*****

The reason I was in that store was to buy a sink plug. I had carefully measured the old plug and written it down in both inches and millimeters, because we are still using both systems in Canada and I wanted to be prepared for anything. I bought one with the same measurement and took it home. Imagine my dismay when the new plug was much larger than the old one. It turns out, for those of you who are as unknowledgable about these things as I am, that you have to measure the bottom of the plug, not the top. Why, people, why? Is life not already complicated enough that you cannot measure a simple plug in the most logical way and require only one trip to the store to replace it? (Note: I realize now that my idea of logical is obviously wrong. The bottom of the plug, not the top, goes in the sink drain. You don't want the width when you're looking down at the plug; you want the width you'd see if you were in the sink drain and were looking up. Of course.)

The day I bought the plug, the cashier had to swipe it on a machine to deactivate the anti-theft mechanism in the package. Which didn't work - it still beeped as I went out through the anti-theft gates - but she waved me on my way. Who steals a $1.99 sink plug? It must be an actual issue for the store if they've gone to that much trouble to thwart all the plug-thieves out there. I just hope when I take this one back that it doesn't beep when I'm going in to return it. I should probably just put it in the donation box but now I kind of wonder what will happen.

*****

I am back to collecting lolcat pictures, so I will leave you with a few that I hope are new to you.

 

How I felt about the sink plug fiasco.


















*****

Have a good week if at all possible, and tell me ... have you ever bought the wrong size sink plug using the same reasoning I did???




Friday, 25 June 2021

Still Trudging

Hello, my friends.

There has been so much going on here. I feel like I've been wading through a wave of thick sludge, uphill, as it threatens to push me over or pull me under. 

I am still finding it hard to process my husband's illness and death. Every day I cry over something. Sometimes it's from loneliness, sometimes it's something little like having to change the name of my next of kin entered in the hospital lab records. Sometimes it's special dates. Valentine's Day, my birthday, his birthday, Father's Day -- all have passed with sadness. Our anniversary is in a few days' time. It would have been our 41st. I keep remembering this time last year, and what we knew and didn't know about the path ahead.

I'm trying to take care of lingering decisions on assets, and everyday maintenance of home and vehicles. And I've been doing my regular job. The job is more of a refuge than a hardship, luckily.

But both grieving and meeting work deadlines has been complicated by a recent health issue my mother has developed. For the last month we have been in and out of hospital Emergency, and although there is finally a deeper investigation happening, it has meant extended periods of time convincing her to take medication, taking her to appointments, booking appointments, etc. I've also taken her to get both of her Covid-19 shots, and I'm relieved she has had them, but it still involved so much time.

Mom is scheduled for a geriatric assessment in mid-July, due to her cognitive issues which were noted by the Emergency physician at one of her trips there. Mom is not at all happy about getting old (she's 91), or maybe I should say she's unhappy about developing health issues. She's always been pretty healthy, and I do understand the fear that lies beneath her anger. Still, the anger is what comes out and it's often what I get to deal with. For example, she was very rude to the Emerg doctor who looked after her earlier this week. This is not related to the dementia, although perhaps it's worse now. I can remember when I was younger that she would buy something, not be able to figure out how to use it, and blame it on the product, the company, and the poor employee in the returns department when she took it back. Things that don't work or go wrong are never her fault, and she uses sharp words as her tool to make sure others understand this.

There is also a problem with driving that has come to a head. Her car has been pronounced unroadworthy without extensive repairs - so extensive that the garage recommended she get a new or used car instead. Her reaction was to blame the garage for not pointing it out last year. Turns out she hadn't had it to the garage for quite a bit longer than that. My brother and I are not sure she should be driving at all, given her memory issues, and the suggestion that she could use some other means of transportation (eg., me, a friend, hiring a driver) was met with actual threats of self-harm. (Mind you, if I call her and offer to take her out, she never says no.)

Blackmail: not cool, Mom. Not cool.

I'm in better shape than I was two weeks ago. There was a point when I felt completely defeated, exhausted, and invaded. No sooner would I arrive home from taking her out or visiting with her then she would call me and ask the same questions about medication, appointments, or outing times that we had gone over and over while we were face to face. Given her health, I felt compelled to answer that phone. It is mentally exhausting to repeat myself over and over while staying calm.

But eventually I made a new rule for myself. If I'd just seen her, and it was still daytime, I would not answer the phone. I might get back to her later, but it would be at a time of my choosing. Of course, I still answered the phone when she called during the night. She is a sound sleeper, so if she wakes up with a problem, she does need assistance.

It's been a rough month, but I'm hopeful that with further tests and specialists we can control her health condition. She won't accept home care for pills, cleaning, laundry, or meals, but that's her choice and that's okay, as she is still able to do them for the most part. I'm not sure what's going to happen with the driving. I'm trying to keep her occupied and get her out of the house daily until her geriatric assessment. Perhaps when an outside party sees her cognitive problems they will have to act. I do not have full faith in this, however, because they've already told me they support seniors being able to drive as long as they can, to maintain their independence. I understand her desire to be able to get out at her whim, not someone else's. I am worried about who she might hurt, though (or worse).

In the meantime, reading your blogs has helped me keep my sanity, so thank you for all your posts. I'm also going through quite a few books, all light reading that is easy to get lost in. One of these days I will get around to updating my reading list here.

In the meantime, here is what I've seen through my camera lens lately.

 

New life in my back yard:

Fawn and mama deer

 

Last year's (or the year before's) new life, now growing up:

See the horns? two prongs on him. Prong is not the right term; maybe a reader can set me straight. I know the tips of the antlers on older bucks are called points, but what are they called when they're still stubby?


One prong on each side for this younger male. I think the number of prongs indicate the number of years old they are. Again, can anyone tell me?
 

On one of the rare walks I've had time or energy to take, this guy kept me company until his family happened to drive by and I helped get him into their vehicle. He was not impressed by that.

His name is Jingle, according to the little girl who was trying to nab him, and when he gets out of their house, he stays away for weeks. Jingle, I sympathize, but you're safer with your family.

 

And some lupins that grow everywhere beside our highways - they are a feast for the eyes and I only wish the photo was clearer:

The colour is true, even if it's blurry.

 

And my beautiful Meredith cat: (the other girl, Lucy, wasn't feeling like a photo shoot that day)

Meredith was telling me to stop taking pictures of the deer and sit with her instead.

 

That's it for now. I had my second Covid-19 shot today, and my arm is aching through to my armpit and out to my fingers. Hopefully it will feel better tomorrow. For now, I'm going to lie down and hope the phone doesn't ring.

Take care, everyone.




Friday, 16 April 2021

Still Standing

Hello, friends.

Thank you for your kind comments and for continuing to check in here.

I also want you to know that I read many of your blog posts and am thankful for both the distraction and the chance to keep up with your lives.

I want to tell you more about my husband's illness and death, and how things have been since then. There is a purpose to this beyond bringing you up to date. You will see what it is by the end of the post.

For a few weeks after my husband's death, I ran on adrenaline. I had deadlines at work, I had bills to pay, and I had a lot of paperwork to do. The paperwork was overwhelming and I was fortunate to have my brother's help in prioritizing it and making a plan to get it done. Everything that seemed like it should be straightforward, wasn't. Everything that seemed like it should happen quickly, didn't. It was exhausting thinking about it and then it was exhausting making the phone calls and writing the emails and mailing forms and documents away. Finally, it was exhausting not knowing how long it would take to hear if problems had been resolved.

After that initial frenzy of work and paperwork came a lull. Suddenly it felt like all the energy had been sucked out of me. I continued to work because the concentration my job requires gave me some daily mental relief from the sadness and grief. Many days I felt like I could barely take the steps it required to get out the door. And when I left work to come home, I wouldn't get more than a few steps out that door before reality, and the accompanying pain, came into full focus again. I felt broken, and I wondered if I would ever feel any different. Even with the support of my family, friends, and neighbours, it felt like I couldn't get rid of the massive boulder that seemed to sit on my chest. I was never far from tears, and I was lousy company. The scenes from the past year, and especially that last month, played over and over in my head when I had time to think and nothing to distract me. The grief over how he suffered and died was as bad as the grief over losing him.

Cancer is a horrible disease. Esophageal cancer may be one of the worse forms. I don't know - I haven't had much experience with other ones. What I do know is that my husband wasted away from a robust person to a skeleton in a matter of months. His last month was horrifying beyond anything I had expected. With the help of the local palliative care team, I was able to look after him at home. It was what he and I both wanted, and I am thankful I could do that for him, because there was nothing else I could do.

He went through so much pain before he was even diagnosed. He didn't get the pain treatment he needed until he was admitted to the palliative care program three months before his death. For the last month, I was shown how to give him injections of powerful medications through a subcutaneous line, but as quickly as his dosages were increased his pain and breathlessness increased too. It felt like we were always chasing the symptoms and rarely catching up. For his last couple of weeks he required medications every sixty to ninety minutes, day and night. Fortunately, palliative care also provided some respite time for me to sleep. They also tried to assure me that I was doing as much for him at home as would have been done if he had gone into the palliative care unit in the hospital. But that didn't help his suffering or my desperation and guilt.

If you're not familiar with esophageal cancer, you may be wondering why it wasn't caught sooner. The problem is that it doesn't produce clear symptoms until it reaches an advanced stage.

Fatigue is an early symptom, but there are so many causes of fatigue. My husband had bloodwork done a year before his other symptoms started, because he had been feeling so tired. But nothing was found.

Indeed, even after his swallowing issues began, he was sent for more bloodwork and again nothing was found. Finally a CT scan was ordered, which took six weeks to happen, despite several followups and pleas by us. By then he could only tolerate liquids and had lost a lot of weight. He had a stent put in his esophagus to help him swallow, and started chemo, the mildest course available because he was so frail. Neither surgery nor radiation were options because of the advanced stage of the disease.

We were told by the chemo doctor that finding the cancer six weeks or six months or even six years earlier wouldn't have made a difference. I wonder about that that last part, and eventually I may ask my doctor if that's true or if the chemo doctor got carried away with his sixes. However, the fact that my husband was fatigued for so long prior to developing other symptoms leads me to believe that finding the cancer even two years earlier would probably not have changed the outcome. And I have spoken with folks who knew other people with the same kind of cancer. Even those whose cancer was found early enough that they could have surgery or radiation never went back to being healthy; instead, their treatment seemed to only prolong their discomfort and pain.

My husband was a long-time smoker, and we were told that's what caused his esophageal cancer. He had tried to quit a number of times, and succeeded a number of times. But he always went back to it as a way of dealing with stress. Some people would say, or at least think, that he deserved what happened. But I can tell you this: as much as I hated everything about the smoking, nobody deserves the kind of death he had.   

Smoking is just one of the risk factors for esophageal cancer. Obesity and long-term heartburn are the others. Smokers are often ostracized these days, but how many folks with obesity and heartburn do you know? Quite a few, I bet. You know one, at least - me. My heartburn is well-controlled but I've been taking strong medication for thirty years.And I tend to be a stress eater, which is no better than stress smoking.

The reason I have explained all of this is to try to encourage people to listen to their bodies and to be aware of the risk factors. My husband would have needed to really push his doctor to investigate his fatigue further when the initial blood tests came back negative, but that wasn't him. Many people are like him - unwilling to make a fuss or question the medical results. He was also a very stoic person. People, do not be stoic. If you feel something is wrong, keep pushing to find out what it could be. You know your body best; after all, you have lived in it your entire life.

This has been a long post. If you are still reading, thank you.

I hope to be back soon. Until then, take care of yourselves.

 

 

 

Monday, 11 January 2021

To Let You Know

My husband passed away just after midnight, January 7.

You have all been so supportive through his illness, and I wanted to let you know.

There is so much I could say, especially about the last six weeks, but the words seem to be stuck inside me.

Maybe later I will be able to get them out.

For now, please know I am okay ... sort of. I have already grieved so much in the last nine months.

I have plenty of support from family, friends and neighbours.

I can still hardly believe he is gone forever. 

He was a good and kind and smart and funny man. I miss him so.

 

 







 

 

Saturday, 12 December 2020

Health Update 4

Hello, my bloggy friends.

Holidays are a hard time of year to be sick, or to have a loved one be sick.

When I go to the stores to pick up medications or to get other things my husband needs, it is hard to see the Christmas lights and hear the music.

We have spent many happy Christmas seasons while other families we didn't know have been suffering. We didn't truly understand the black cloud that hovers over a family in pain. Now we are that family, and now I understand. 

I don't begrudge anybody else their happy season, especially in this difficult year of the plague.

I am just so sad, people.

It's not about missing Christmas.

It's that my husband has deteriorated so much in such a short time. I am afraid he is losing the fight. His chemo is shrinking some of the tumours, but he has developed other serious health issues.

I'm sorry to be so vague, but I want to respect my husband's privacy as much as possible.

*****

If you feel like sharing, would you let me know in the comments how each of you is doing? 

I really want to hear it, whether it's good or bad.

I could use some good stories, but I'm here to listen if you have the other kind, too.

And here is a picture for you.


 Take care, my friends.