Saturday 2 April 2022

Why I'm Slowly Going Crazy

The euphoria over Mom's better vision lasted only a few days, which didn't surprise me. She went back to the surgeon for a checkup and he says her eye has healed nicely. But because she said at the initial appointment with him that she didn't want the other eye done, she will now have to wait for a couple of months to get a second surgery date. She was not pleased. Meanwhile we are still working on the 4X daily eye drops for the first eye.


Captain's Log: Friday, April 1, 2022

9 a.m.

(Went to Mom's for her first eye drops of the day.)

Mom: You're up early ... (Questioning voice, meaning WHY am I visiting this time of day?)

Me: Yep! I'm here to do your eye drops.

Mom: Again?

(I have been here 72 times previously to put drops in this eye.)

(Put drops in Mom's eye for the 73rd time.)

Mom: Aren't you going to put them in the other eye?

(She asks this question 99% of the time.)

Me: No, just in the eye that was operated on.

(Always the same answer.)

Mom: I could do those drops myself.

Me: (Smiles.) (Swears silently.)

Mom: When did we go for groceries last?

Me: We went on Sunday. Would you like to go again today?

(She checks fridge. This is an extended process. Finally she shuts the door and says she needs most everything. I had a look, too, while she had the door open. It's a toss-up: we could go, or wait, but we might as well go before the busy weekend. Because Nova Scotia has lifted its mask mandate and there are lots of un-masked people everywhere. Aaaaaand that's a different post topic.)

Mom: Yes. I don't really need anything. But I like to get out. And I think I need to go to the bank.

Me: Okay, I'll be back at 1 p.m. to do your eye drops. We'll go then if it's not raining.

(For definite appointments, I always print a note for her so she will keep seeing it and be able to get ready more or less on time. Now, thinking to myself, I decide I won't make a note for her about this, because it's supposed to rain and then we won't go, but if there's a note about going, she will get ready to go, and then we'll need to have an extended conversation about whether she really wants to go or if she's just going because the note said we were going. And if there's no note, and she forgets we planned to go, it's not a big deal. If she wants to go, I'll just wait while she gets ready. If you've followed all that, you get a gold star.)


1 p.m.

(Went to Mom's for her second eye drops of the day.)

(She was outside gathering up dead leaves and grass from the flower garden she has been unable to work in for the last few years due to her poor vision.)

(She wondered why I was there.)

Me: Eye drops, Mom!

Mom: (Frowns.) You and your eye drops!

Me: Yep! And would you like to get groceries?

Mom: (Frowns.) Were we supposed to go for groceries today?

Me: Well, we talked about it. Would you like to?

Mom: I'm not ready to go. I didn't know we were going. There was nothing written down.

Me: Y- es-s . . . we weren't sure if we were going, because it was supposed to rain . . . would you like to go?

Mom: Well, I have to brush my teeth. And change my clothes. And can we go to the bank?

Me: Sure. Take your time. There's no hurry.

(5 minutes later) (I give her full credit for getting ready fast. Except she hasn't changed her clothes. Never mind. No one will notice. Half the people at the grocery store won't be wearing the ONE THING I wish they would wear -- a mask. At least Mom will be wearing a mask.)

Mom: Are we going to the bank?

Me: Sure!

Mom: Just let me see if I have any money.

(Mom forages in purse. With some help, she discovers some money.)

Mom: Oh, that's enough. I won't buy more groceries than that.

Me: We can still go to the bank if you like.

Mom: No, that's okay. I have enough.

(Decide not to push the trip to the bank today, because it's Friday and probably busy downtown.)

(Go to grocery story, where she spends all the cash she had.)

(Go to her house to drop off her and her groceries.)

Mom: Thank you. And can we go to the bank sometime? I need to get some money.

Me: Sure ..... but not today. We both have groceries to put away, and I have other things to do.

Mom: When can we go to the bank?

Me: How about the next day the weather is good, okay?

Mom: (Very worried looking.) Okay .... 

(I step out of the house to leave)

Mom: When did you say we were going to the bank?

Me: We'll go the next day the weather is good. Would you like me to write that down?

Mom: NO!! I just need you to tell me and I'll remember.


This is a condensed version of the conversation.

Every interaction is something similar.

I realize this is caused by the shrinkage of brain cells. I have seen sample MRIs online of brains of dementia patients. Mom has had an MRI that confirms her loss of brain mass.

But I am so tired. Mentally tired. Emotionally tired. I spend so much energy just on interacting with Mom. And I have to be upbeat or she will ask me what's wrong. I don't want to explain; explaining would be futile. But the effort to be upbeat and to accommodate her memory problems and unfortunately her personality quirks is taking almost all the energy I have. I am not working at my job, I am not getting anything done at home, I am trying not to think beyond the next ten days of eye drops ...... but when the worry about the future gets too big, it's hard to ignore it.


The sign says: I am NOT dead, just tired & ugly. PLEASE LET ME SLEEP!!!!

That's all I've got for today.

Better days ahead. I hope.

For all of us.


gz said...

Wishing you patience and strength

Diane Henders said...

It's no wonder you're tired - what a gruelling physical and emotional process. Sending you my best wishes for strength and patience... and above all, restful sleep.

Elephant's Child said...

Of course you are tired. Physically tired. Mentally tired. Emotionally tired.
Heartfelt hugs and wishes I could do more. Mind you, my mother flatly refused to let me administer her eye drops and said that she would do them herself. I wonder. Still.

crafty cat corner said...

I sort of know what you mean here. Although Tom has not got dementia it is very wearing caring for him each day. It was 5 years ago that he was diagnosed and by their books he should be gone now but somehow he has made it thus far. He is now getting very very weak and short of breath and the emotional strain is horrendous. I have to remain cheerful even though I see him failing. He has no flesh left and is all bone and he was a big muscular man, its so sad.
The kids are wonderful and give me lots of support but its hard.
love the pics.

Caz.P. said...

Can't stop laughing (I know its not funny) Similar problem with my mum who is 95 and bed ridden. She is nearly deaf , wears aids, and partially blind.Her cataracts op didn't work for her. My brother says her hearing is selective.Last bit of power over us, haha. When we wear ourselves out trying to tell her something.Thing is, once we get connection she can talk to you just like she used to. You have to do everything including feeding, drinking. She is a baby again. My brother is always saying " earth calling mother" where are you? Makes her laugh.Calls him a naughty boy. He's 54. Hope you find the strength , it comes to us all I suppose. The picture of the horse made me howl.Best wishes Carol Partridge. ( England) p.s. You live in a wonderful country. My eldest son lives with his Canadian wife in Saskatoon. 13 yrs now.They've spent the winter in B.C. avoiding the snow! .Thank goodness for video links.

messymimi said...

Praying for better days ahead for you and your mother.

You are welcome to use the line from my blog, i love to share.

dinthebeast said...

You deserve a medal for your devotion and effort. I don't know who would be in charge of the presentation of such medals in Nova Scotia, but they need to get their act together right away.
I was on an expedited schedule and there was still a month in between my surgeries.
I just remembered that there is a little lumber town in northern California called Scotia, so I wondered what Scotia means, and apparently it means "land of the Scots" which kinda makes sense, as there certainly are plenty of Scots in northern California. I was one of them while I was there, as were the rest of my immediate family.
Good luck with your mom's eyes, and by the way it's really nice to see you posting regularly again. I can only hope that means you are feeling a little better about things.

-Doug in Sugar Pine

kylie said...

I'm so sorry you have this extensive grief and frustration to deal with.
I hope there will be some kind of relief soon.

My mum is currently in ICU with an infection which was difficult to diagnose but she also delayed going to hospital even when the podiatrist told her she needed to be there.

I don't think mum has cognitive issues, just pride. I lost the plot with her, I've been battling this attitude for years now......

I really really hope you manage to catch a break

Bonnie said...

I love how you have a Captain's Log here! You are doing so good in difficult circumstances. If I should ever end up in your Mom's situation I'm not sure if anyone would be up to taking care of me as well as you take care of your mom. You should reward yourself on a regular basis with something that is special to you.

Have you ever thought to ask a family member if they could step in for you once in a while so you could get a much needed break? I know others don't live as close as you but maybe something could be worked out. I've read several articles about being a caregiver and they all stress getting away occasionally. You need a break!

Love the funnies, especially that last little guy!

Anonymous said...

Indeed better days ahead for you.

Joanne Noragon said...

You have no idea how I wish for you the support you have lost. I pretend, once in awhile. You have no idea how often I think I'll go around a corner and find a phone to call my mom.
It's good your mom can get out and garden a bit. And, only ten more days of drops! Love the sleeping horse.

Mike said...

And you can't get mad at them because it's not their fault.

Red said...

You deserve high marks for looking after your Mother. They are always challenging. Yes, it drains all your energy.

River said...

The one bright spot is the break in between surgeries so there will be at least a few days where you don't have to administer eye drops several times a day.
AND, (drum roll) I got the gold star, because I understood that conversation :)

jenny_o said...

gz: Those are the two things I need most - thank you.

Diane: Thank you - I could use the restful sleep but I'm not getting it!

EC: How I wish things could have been different for you and your mother. Actually, I wish the same for me. The only reason Mom lets me do the drops is because she likes the visits from me. Now I am struggling with how to gently ease back into one visit a day (for her medications) when the time comes. Something else to feel guilty about.

Briony: I wish we could sit and talk about this. I know how exhausting it was caring for my husband in his last weeks. I can't imagine doing that for over five years. And the heartbreak of seeing a big, healthy man reduced to skin and bones is horrible. I'm so sorry you are going through this, both of you. It's good that your kids are supportive but being there 24/7 is on a whole other level. xx

Carol: I'm glad you connected with this post and left a comment. Your situation is several degrees further along the scale of care than my mom but I can imagine the future that may await us and it looks like yours. It sounds like you and your brother (and your mother) still have a healthy sense of humour, which is very important. All the best with your mom's care! (I do love Canada but I've never lived anywhere else!)

Mimi: Thank you - sending good thoughts to you, too. You have a lot of challenges in your life as well. I loved that line from your post :) For anyone wondering what the line is, check out Mimi's blog here:
I think you'll know the line when you see it. Otherwise, you can find it in her comments section where I asked her if I could borrow it :)

jenny_o said...

Doug: The very sobering thing that I have come to realize is how many other caregivers there are out there in even worse situations than I'm in - and nursing homes are full, with decimated staff. They never had high staffing levels to begin with, but covid has really affected the numbers. Thankfully, our provincial government (elected last fall on a platform of health care reform) is making a good effort to help with this issue. But I don't know if it will be timely enough to help Mom and me.
So you have Scottish heritage? Interesting! Is your surname Scottish? I live in an area heavily populated with descendants of Scottish immigrants. The "M" section of the phone book is full of Mcs and Macs and there are many other Scottish names still in evidence. And you are correct, Scotia is Latin for Scotland, and Nova Scotia translates as New Scotland. When you look at pictures of Nova Scotia and Scotland, it's evident why settlers named it that way. When you look at drawings of the world before the continents separated, you can also see how Nova Scotia could have once been a part of what is now northern Europe, so it's not surprising that the topography is similar.
I WAS starting to feel better about life, but I think this latest commitment to my mother's care has knocked the stuffing out of me. Hopefully I'll bounce back once the level of care drops again. Thanks, as always, for your thoughtful comment.

kylie: I'm sorry to hear about your mom. It's scary to see someone get so sick while you must sit by and feel helpless, and it's also frustrating to deal with the stubborn behavior. Maybe the refusal to see a doctor is partly based on fear - what will happen once this situation is out of their control, that kind of thinking. Well, that's how *I* think, anyway :) I hope your mother has a full and quick recovery.

Bonnie: I think the times in a captain's log should be written differently (in the 24-hour clock) but what the heck :)
The only family member that could possibly help me is my (only) sibling, and he does live a good distance away. But your comment made me think, maybe there is some way he could help and goodness knows he has offered to help in any way possible. It just seems right now that it takes more energy than I have just to plan a break. I also suspect that once the eye drops are finished, I will feel less stressed. But you have given me something to think about. I also worry that things will get worse as time goes on, and I may need his help more at that time. But the more I think about your suggestion, the more I realize I am trying to do everything and that's probably not necessary, maybe my brother just doesn't know how to help and I can give suggestions ... thanks for your thoughts, Bonnie. My brain is in gear now about this possibility.

Andrew: Thanks, and the same to everyone else - we all have problems at some point.

jenny_o said...

Joanne: There was a time when I thought about losing my mother and knew I would miss her. But that mom has already been lost to me, and I think it makes the slog now much harder. I do understand what you're saying, though. I wish you could talk to your mother too. And I wish I lived close enough to give you a hand, especially with meals! I would cook for my mother but whenever I try, she won't eat it - she eats the same things every day and doesn't trust "my" food. Ah well. If wishes were horses, and all that :)

Mike: True. And yet, somehow I still do get mad at times. It's not for her lack of memory, it's for the part of her personality that already existed before her memory deteriorated. But getting mad only makes things worse, so I try not to. If adversity creates character, I should be quite a character by the time this is done :)

Red: I know I'm not the only one in this kind of situation. There are so many other caregivers who have it worse. I worry about what is coming further along this road for mom and me. There are many ways this can get worse.

River: Yes! A gold star for you! lol
You're right about the break between surgeries. I expect I'll have at least one month free of eye drop duty, and can get my head calmed down before starting over. And get some rest :)

Steve Reed said...

I know it's fatiguing, and frustrating. You are to be commended for your patience!

Charlotte (MotherOwl) said...

I looked for the sentyence from MessyMimi and did not find it - but at least I was looking for the right one :D

I hope you fimnd time for sleep to replenish your strength and patience. TO let your sibling (brother?) take over- even just for a day would be a good idea.
Prayers and greetings from Denmark.

jenny_o said...

Steve: I need MORE patience. I don't know how people do this for years and years.

Charlotte: This is the sentence: "Hello, crazy, how you been?" It struck me as funny, even as I understood just how Mimi must have felt! I'll be giving some thought to the possibility of my brother doing something concrete to help, after his busy season at work. He is already a good listener, which helps, but if I give him a definite thing to do, I think he'll try his best to do it.

Janie Junebug said...

"Bring to a boil, then keep on slow simmer on stove." That's the recipe for what you're going through. I will not lie about the last few years of my mother's life: I am so glad I lived far away. Even talking to her on the phone was trying.


dinthebeast said...

Scots-Irish by way of Oklahoma. McFall is my surname.

-Doug in Sugar Pine

jenny_o said...

Janie: I have a feeling my mother (consciously or subconsciously) chose a place to live that was near me when she moved back to the area twenty years ago. Not necessarily for me to be a caregiver but maybe just to be near the child she felt was "less busy" and more able to give her the time and care she might need or want. I'm sorry you had similar frustrations with your mother. The phone thing is true! At least when I see my mom in person I can write a note for her to follow (although even that is getting dicey.)

Doug: That is a new Mc/Mac name to me - and I thought I'd seen them all! Sometimes I forget how small my actual day to day world is :)

Martha said...

Wishing you lots of strength and peace. And, of course, rest. Lots of rest! It's such an exhausting time for you. Please don't forget self-care and breaks to rejuvenate! You matter!