STORY TIME ... If you're enjoying a beverage of any kind right now, I suggest you put it down a moment. I won't be long...
On Friday a friend was over, and we were talking about things we loved that have passed on. She's decided that she will start cremating her pets when they pass (horses and dogs primarily) and keeping them on a beautiful display.
I told her the story of a vase with a lid my grandmother had for many years, that my brother and I decided we'd display at the funeral. The Director said we could have used that vase as an urn to keep her, it just needed to be sealed.
This revelation story meant that my friend could then collect various more fun containers for CHEAP or free instead of spending a million bucks on official urns - like teapots and such.
I cautioned her "You just have to mind how much cremains you will end up with. I'm sure your horses will have more than a human... HEY I still have my Grandmother here as we haven't been able to spread her ashes yet, let me go get them!"
... I got up to go find the velvet bag in which she currently resides ....
to find ...
that
I
COULD
NOT
REMEMBER
WHERE
I
PUT
MY GRANDMOTHER'S CREMAINS!!
Advance to next afternoon when I return home from errands and look up and go
"Oh! Hey Nana! -- hey Honey!? FOUND HER! .. she's on the top of the cupboard in the laundry room."
... because the liquor cabinet was too full. 🤣
(Phew! thats not a conversation I wanted to have with my brother!
I mean, I WiLL because it's hilarious...but not because I lost her.)
Imagine .. this date is fast approaching. I am both happy and sad to see it.
He doesn't drive. We feel traffic would be an issue, but a huge ride on mower and putting the trailer into it's spot are just fine.
He works with me 2 days a week. That's all the business can afford right now - they KNOW they're helping us out significantly. We are so grateful that he has that - but I'm not sure it will truly ever be much more.
Haven't seen the kids since just after Christmas. I don't think he hears from them. Doesn't hear from family really at all.
Our friends have really stepped up and welcomed him as he is. We all needed a break to allow ourselves to all change and adapt after Covid and lock downs and this... so it's going well.
The Echo says his heart is working back up to normal pressure again since the PFO closure.
It kind of rushed over me this morning during my wake up ritual .. this has been a pretty heavy week already and it's ONLY Wednesday.
In order of how they dropped -
We haven't seen Smudge (the youngest male cat) since Friday - possibly Saturday morning. It was a gorgeous weather couple days Friday and Saturday and the farming community was out and at it busy on our property and the neighboring farms. He's been an outdoor cat for a bit now and has managed a night or two outside on his own, but on Monday morning my stomach started to turn that he hadn't shown up.
Monday morning DH and I went to tour the Brain Injury place - my hopes to find him a place to feel like he's really not alone and for us to both increase his speaking and opportunity to speak and find more ways to help him find the words. It wasn't as much as I'd hoped, mostly because they're still limited in how many people they can have in person. I am afraid the longer it takes him to find places to supplement therapy things, the harder it will be for him to repair the lost communication. So that was a bit of a let down for the time being.
On the way to work, my StepMom called and said they had sad news there... my heart of course dropped.. but she wasn't crying, so it was a very uneasy moment.. her brother's cancer had taken over and he was in a lot of pain. He'd just called to let them know he was doing Assisted end of life Tuesday morning. My dad was also very close to him and it really shook him too. I got to talk to my dad for a couple minutes and I did my best to be supportive for him.
After hanging up, I thought I should try to find some scripture to send over to them on Tuesday. As I said, it's now Wednesday - and I completely forgot to do anything for them.
Monday after work we raced home to use the daylight to our advantage and did a walk around the property to see if we could spot a cat body. Nothing.
So we hopped in the car and popped over to a friends for a drink to celebrate her birthday. The first playoff hockey game was on, and of course, one of our other friends popped in for her too, so this turned into watching the game, having pizza and in general a good evening.
uesday was a weird day right from the start. DH and I have been in good joking mood and spirits, but it's been sinking in my tummy that he's not there. Smudge is a part of 4 four-leggers that I need to deal with when my feet hit the floor in the morning. Each has their own routine inside of mine and I'm missing one and I don't like having to adjust to it already. He would only be 2 on Aug 1 this year.
o in and around my head being a little off, I got the call we have been waiting for since January for DH's heart procedure. They're booking for May 17.
Yep, that's now 13 days away. It's supposed to be a straight forward procedure. In the US I see that they do them a lot, and I would venture to say that they do a lot of them here too, but our medical systems are very different and it wouldn't be advertised the same way it is there.
I haven't told him yet, because there's a chance they could change it. I will tell him by Friday. He has to take some meds for 5 days before, so he will need some heads up for sure.
From Google:
What happens after a PFO closure?
After a PFO closure, you may be able to leave the hospital the same day or after an overnight stay. Before you leave the hospital, a chest x-ray and/or echocardiogram will be performed to make sure your PFO closure device is still positioned properly.
I got this the other day, and you better believe it's the shirt I will lay out for him to wear the day he goes in *bahahaha* No - it's NOT open heart surgery... and quite likely he won't have to stay over night because of the covid things, but I will be home with my guy and take the best care of him for as long as he needs me at his side.
After dropping it all out like this and listing them off, it's understandable in my head once again as to WHY my body feels heavy or distracted. There's good reason. <3
Its so sad sometimes being an adult.
You have friends .. some close, some not so much, some that it takes a moment to recognize them when you pass them in public.
DH went through this stroke, and people wanted to see him to give support when it first happened. Due to Covid and outbreaks and the like, it wasn't possible for people to see him until he got out of the hospital. Then when he got home .. the family expected an outpouring of visitors – only, that didn't happen.
We spent 3 months living in our trailer in his parents' back yard pretty much alone. We didn't really want to invite people over, and I'd guess that some just didn't want to come by because of where we were.
Then we got our own place. It's further away from all those friends I mentioned above … and I can assume that partly due to the stroke, not everyone knows how to deal with how he's doing. I learned this from all the caregiver resources and support groups I'm in. I certainly can't say that I've learned it from anyone actually telling me... which would be easier.
I do not know any other way how to ask people to come over. I don't know how to make anyone, including Rob, understand that he needs company and friends around. That us going to them all the time isn't how this is supposed to work right now. It's how it always seemed to be before, and now that we're further, it seems like so far, that's what we're looking at now if we want company.
I dont know what to do for him.
All it takes sometimes is to just stick your face out there and ask for what you need. Manifesting is doing just that .. but we tend to forget to ask. It seems that every time I've done so lately, someone "picks up the phone on the other end" so to speak. My call is always answered.. even if it isn't resolved. It's definitely good to feel heard.
I'm starting to adjust my focus on finding us a place to live at least until the spring. I'd love to look at buying something - but without the steady 2nd income knowledge right now, it will just make more sense to try to find a place to rent for a short month to month term.
I reached out by email to 2 people today. One is a contact that said they might have an apartment available, and the other is a realtor friend in the neighborhood. The realtor friend came into the store about 10 mins after I hit send on that email. We talked briefly - I said .. I just need something til Spring at the least - and I am not worried about upgrades or painting or things like that. I need a place with heat and light, and it would be super if I didn't have to commute super far to work, and where Rob would be able to visit with his friends without having to drive. He said as a matter of fact - they take possession of a new place just up the street from where I work - TOMORROW .. and he'll talk about it and see if there's anything he can do.
If you don't ask - there's very little chance it will be offered to you. And something like this, or that apartment, are exactly what we need right now. Rob's going crazy alone, and to be closer to me at work would mean he could go for a walk and visit. He could sit on the porch and wave to people going by. He could walk the dogs.
He's mobile. He can walk without any kind of aids (walker, cane, human spotter etc.)
He can speak. Sometimes, he can form a sentence. Sometimes, its a collection of words that the listener needs to string together with him to make them make any sense at all. He has Verbal Aphasia / Apraxia. These are apparently two different but similar things. (Feel free to look them up at your leisure). He has difficulty forming the words or sounds with the muscles, and the words he comes up with aren't always the words he means to say.
He currently can not drive, play the sports he played prior to the stroke: Golf, baseball, darts, hockey. These all require coordination he doesn't possess right now.
He doesn't not read or write very well. He is willing to allow someone else (me) to read an email he gets to him when there is a lot of words, however, it seems like he understands a short text most of the time. We do know that he can read sentences - he does this with his speech therapy and OT homework.
Numbers are still complicated due to the Aphasia.
There is pain / numbness / a void on his right side in his hand, wrist, thigh, knee, ankle or foot that comes and goes. Most of the time, he just says it's uncomfortable.
We get up between 630 and 730am. We go to bed around 11pm 7 days a week.
He has a regular appetite. His medications are only a self-injected blood thinner (5000 units), and an Aspirin 81 tablet every morning. We expect the Thrombologist will take him off the blood thinners this week.
He's generally in good spirits. It's boring to be stuck at home all day with basically nothing to do. He has puzzles that friends have loaned us, but again.. that's one task.
He plays a couple games on his phone, one that he's always played is Sudoku and it's nice to see that he is back to playing it. I don't know if there is a history or how to look for it, but it would be interesting to see if we could look back a month and see what his time calculation on it was before the stroke and where it is now and how or if it has changed much since the stroke.
I have a couple days when I don't have to go in to work, sure, but apparently, someone said I'm supposed to have time when I don't have to be the one 100% responsible for Rob and his needs.
Well that's interesting, because prior to the stroke, wasn't I just as responsible for my own and my husband's needs as I am now? I mean, he's capable of taking care of himself. I leave him a list of the same basic stuff I'd make for myself to do during the day if I were the one who would be home. But being a caregiver now, my only time away from my partner is when I go to work. His day is unfulfilling and when I'm done at work, he wants me to come home and be there with him. I've also learned that I don't have to entertain him, I just need to be where he is.
We don't have satellite or good internet out in our trailer, so we can't exactly flop down and binge watch anything right now. So I have been trying to find us friends that are understanding of where he's at that will let us come visit for an hour or so and help engage him and work on his social skills. It's becoming a balance now. Yoga is my thing on Thursdays. So, if he's interested in joining in (like he did last week for the first time), great, but I do need to make sure I keep doing this for myself whether he participates or not. I just need to remember that it's what I truly want and my body needs.
But - how come no one else has stepped up and said to either of us "Hey, can Rob come with me?"
One friend has done it when we're with him ... but he certainly hasn't shown up to sit and just spend time with him.... and it would be weird if he came over to just pull Rob away to hang out with him right now. When we had the shop, it was easy for the two of them to sit in there and hang out and get "guy time" because I either had other things to do or a friend over.. right now, I'm a very thin trailer wall away. As much as I was welcome to hang out with them, I didn't always, and right now I really don't have anywhere else to "go".
That doesn't mean someone can't offer to come get him.
I also just realized that in a couple days, he'll have been home a month. I don't think his brother has even come to see him. He did go see him in the hospital parking lot the day before he came home, but I don't think he's seen him since. Or maybe he did once just after he got home...
So.. I'm clearly feeling the effects of the fact that I don't have any time away from my partner - Now I need to figure out how to change that, still keeping in mind that, prior to the stroke, we didn't have to call it that, and that giving it any kind of name, really doesn't change what it is, except it still could very well hurt his feelings if expressed incorrectly.
We were watching tv last night - a recording of a show we'd been watching pre pandemic and catching up. We've been watching it since he got home, so over a week. I got up and went to get a tissue to dry my tears - and the look on his face was so puzzled - confused as to why I was crying.
One of the characters' father was found in a hotel room (cheating on his wife) by her fire fighter husband. I couldn't help it, I was crying at all the complexities of the scene... and there was my poor husband, confused as to why I was crying. I asked if the show sometimes moved too quickly for him, and he nodded, yes. He's been watching tv - our shows, for me. It's nice quiet time together. It's characters he may or may not be familiar with because we watched them before or he's familiar with them from growing up.. but now I'm really not sure he is getting all of it.
I believe that I can handle if he ends up with lesser mobility of some kind - he used to play hockey, baseball, golf, and darts. If some of those aren't up to where they were.. sure, that's not that big of a deal. Would be a bit frustrating for him, but over all, it shouldn't detract from his ability to have an enjoyable lifestyle.
What if he doesn't regain the part that understands why I might be crying. Or what to do when I cry.
Is it going to from this point on be good enough that he will wrap his arms around me and let me sob relentlessly into his chest and that he will point out the tears I have missed while mopping myself up and try to make me laugh as he tells me?
Is ever going to sing along again?
Will I have to keep making the big decisions on my own?
I know that only time will answer these... but sometimes they're enough to overwhelm me.
On top of -
we live in a 5th wheel trailer in his parents' back yard with our 2 dogs and 2 cats,
that I'm the only one with an income until EI kicks in for him or he can go back to work in some capacity,
that I still have yet to hear about my blood work done last November, maybe this past spring to find out what the hell is going on with my hormones,
and that I just quit smoking cold turkey and stuff like this is exactly what makes me want to have one.
With just a single look, you saw what I needed..you knew you could bring it. It may not come tomorrow, but it would come. While you couldn't forsee the ups and downs ahead, you knew we would be able to make it ... as long as we were together.
Basement suites, full houses, extended guests and kids coming back home, trailers and parents... We got this, no matter where this life takes us. Together.
Eleven. Wow. We beat my record.. have we beaten yours? No. But I know what eleven more means to us both and neither of us realize how fast that will go.. and it will. And I don't doubt.. we will still be together. ❤️
You're doing amazing with your walking. You definitely look better in your comfy clothes instead of a hospital gown.
But it's still so hard to look into your eyes and know how badly you want to say the things in your head.
They will come. 💕
Yesterdays update:
It's been a couple days of visits, & he's doing better every day. Raynen & Alee got him coloring books & crayons which he enjoyed, his physio therapy is getting longer & more each day. He is fully up on the walker with a little more speed & balance. The words are coming along too. He will get to move over to inpatient rehab closer to home this week, which could be from 3-6 weeks.
Christina & Rob have made the decision to move to his parents place, where they will have the trailer or a bedroom with all the accessibility & lots of help & love and people will be able to visit. ❤️ They'll look for a new home when they have a better idea of what will fit them & Rob's needs best, whatever that may be.
The alarm went off at 7 like just about any other Monday. The dogs were eager to get outside, the cats snuggles signalling their desire for breakfast, and I don't feel like my world has this big empty space.
1:25pm My first visit to you after your escape from the stroke ICU ward. You were taken down for an test around 11:45 and they're about 2 hrs. So I'm checking out your new digs.
Only 4 ppl in here. Instantly smelled like someone is lying in a pile of their own feces. 🤮 I'm trying not to gag. I'm so glad I have this little bit of acclimation time to your space before you get back. I'm hoping you'll be pleasantly surprised.
The temperature in here is that in between some level of covers and no covers. I'm never dressed properly. Your fire rescue hoodie, shorts, a tank top and flip flops. It is pretty warm out.
Your lunch is patiently waiting here for you. Doesn't look too bad actually. Just cooler than when they brought it.
Tv and wifi is free thanks to covid, so youre on a sports channel.
The man directly across from you has a lady visitor. Their chatter is all the noise in here. Much nicer than the other room, but when she goes, or you get back, my voice will carry like hers is now. Hopefully we won't bother anyone else.
Your nurse today is quite cute, and very sweet.. redhead, Alicia.
I can't wait to see you❤️
3:47pm
I.cant.stop.bouncing!!!!!
I haven't seen you do all things things you've gotten back, I haven't heard a single sound from your lips, and I asked you to show me...
And you blew my MIND.
The Occupational Therapist said you got up and went to the bathroom without help or telling anyone you needed help. (We are so lucky you managed it on your own!!) So they pushed you a bit..and you pushed harder. You went from walking 6 meters in the morning, to walking all the way down the hall for me. 24 meters.
I watched your face. Your determined, block out the world concentration. And you did it.
When I think about it tears come to my eyes. I'm so happy for you and what strength you have.
You even tried to talk for me. We talked about finding you a word board and maybe that would help, and you nodded that you'd be willing to try. I asked if the words just swim around in your head ..I pictured like maybe they're floating and you can't pick the next word and then you can't figure out yet how to make it come out of your mouth and you nodded. I watched your slight frustrated face change and you stare right into my eyes as if to tell me telepathically. I wish you could too baby. But you tried for me, and you have no idea how MUCH that means to me.
And when I had to leave so you could go for another test (and my time was up), the OT said that visitation will open up to allow 2 of us to come see you in the same day. This means I can come every day. And my crazy need to see you won't have to be interrupted because your mom or Raynen need to see you.
While this was a shitty interruption of life, with all the covid issues - we couldn't be luckier in the timing. ❤️
I think I've been avoiding thinking about certain things floating around in my head.
I've spent the last couple days doing the smart things... Assessing finances, what goes out what was coming in, what will be coming in ... Trying to figure out our housing situation, and making sure that the things I need to do for myself get done..
I sent a text to a girlfriend and the following oozed out of my fingertips ...
"And seriously.. just looking into his eyes and just wanting him to say "I love you" is stupidly hard to take. And leaving ... 💔"
The visits are too short. But it's not just that. Going in, I can't wait to see him. I know He's not going to say a word, and I ramble on as long as I can so he has something else to think about for a few minutes..and then I run out of corny bad jokes and we just stare into each other's eyes until he pulls me in for a kiss.
It's not enough.
No one should ever have to "visit" their spouse.
I'm not unrealistic. I know damned well I couldn't do all the things for him that they are doing for him there. But I miss him.
Morning coffee time together, texts while we are at work, hearing his truck pull in, climbing into bed together.. it's missing.
I need to hear him say those words soon. I don't care what the sound like.
6:57am sitting in the shop with the dogs and Kristin..and it's the first song to play on the radio.
No 🤬. This song is trying to tell us something. Thomas Rhett released this so song in 2017. It started coming back on when we got the news they were selling the house. It's played whenever there was a shift in things around us between the showings, the sale, finding out the new owner bought it as an investment and we could possibly stay, and now the morning after finding my husband on the floor in the middle of a massive stroke.
We have an amazing group of friends for us baby. They won't let us fall.
Here's my last update for everyone after seeing him at 9pm.
I'm home. He's doing really good actually. He's responsive now. His right side is still not all working yet. But what they've done has been helping. He's on hourly check-ins where they ask him questions and test strength and power on both sides. I got kisses and cuddles and hand squeezes. Visitors are only 1 per day for 1 hr. He's in London university hosp on the 7th floor in Neuro/operations. The stroke unit is full. His mom will be his visitor tomorrow so she will update after. He is still non- verbal but is trying. Things look good for this soon. We got him there in time for them to do what they need to.
This morning is the first of many that will be different for a while. But I'm not alone. I'm going to need to get get some space to let the thoughts in my head actually run their course so I can figure out what our next moves will be, but for now, it's taking each new day as they come. Remembering that it's ok to cry and making sure I do the stuff I need to do for myself. 💕
