Tag Archives: stroke recovery

Manipogo Provincial Park

Our second summer camping trip was to Manipogo Provincial Park. The park is a mere 130km from our home and it’s pavement all the way to the entrance of the park. The park itself is a rather standard provincial park with big lots and plenty of room between campsites. Campsites range from very private all treed to open lakeside. There is electric and nonelectric sites. None of water. There is a dump site near the ranger station. There is also a simple little concession with ridiculously high prices because there is no competition. An ice cream cone and milkshake was $11. We didn’t buy anything else.

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We really enjoyed the stay except for the mosquitoes. The wind was blowing straight west on the first day and it felt like it was carrying every mosquito in the province to our campsite. We did not have a campfire or take the canoe out the first day because the bugs were so horrible. Even with repellant, they were crawling in our hair, up our noses and under our clothing making us absolutely miserable. We almost packed up and went home. I’m glad we didn’t. The wind shifted from the north west the next day which given our location was over water before coming to us and the number of mosquitos, though still bad was at least bearable. With a heavy dose of repellant and a hat we could go walking. There was a brief downpour and nonsevere thunderstorm the first night which further encouraged us to stay inside the travel trailer. All around us across the lake severe thunderstorm formed and boomed but always far away. Who needs mountains for scenery when you can have thunderheads?

Manipogo has a very long peninsula and a sandy beach. That area is off limits to dogs, presumably due to nesting shore birds although the number of people walking the beach would have the same negative effect. They did have a specific area where dogs could swim and Misty really enjoyed that. I almost accidentally joined her, she was having so much fun. We had several long walks around the campsite which is Misty’s very favourite thing to do. We decided to spare her the canoe ride given her lack of enthusiasm for canoes compared to walks. She remained with the cat in the trailer with the air conditioning on.IMG_8798

Canoeing was different from our previous. The launch site leads into channels in the reeds and is very shallow. The water is murky and full of baby fish. It’s also full of lots of pond scum and all kinds of water plants so my husband spent most of the ride cooing with delight over example after example of his favourite water vegetation. Not my idea of fun, but fun vicariously to be watching him.

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There is absolutely nothing near this park so except for actual camping stuff there is absolutely nothing to do. We slept a lot. I kind of astonished myself by sleeping 12 hours the first night, ten hours the second night and taking several long daytime naps. We read a lot. There was no internet, no cell service, so there was very little to do but sleep and relax and we certainly did a lot of that. I guess we needed it.

We also noticed another considerable improvement in my husband’s mobility. Last trip getting in and out of the trailer was awkward for him. This trip he had no issues navigating the stairs. We also found getting him in and out of the canoe much easier this time, almost back to normal. That was the best part of the trip for me, seeing yet more improvements since the stroke.

The big adventure my husband had was he went picking Saskatoon berries which were in high gear. While he was picking, he was approached by a boy about five who enquired about the berries. My husband gave him the run down about how nutritious and delicious the berries are. The boy tasted them and ran off squealing with delight. It turned out the family was a full time, three generation RVing family stuck in Manitoba by the vagaries of COVID19. None of them knew about the joys of Saskatoons.  We later saw the entire family out picking by the bucketful and the children with their fingers and mouths stained purple. We ate fresh berries and once we got home I made a pie for him.

And of course there was the big beautiful endless Manitoba sky.

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Update on FitMi for Stroke Recovery

It has been two weeks now since we got the FitMi and Music Glove. I thought folks might be interested in where we are at with it. Hubby dearest has been faithfully using it every day. All exercises are done while sitting down. He does ten minutes of each. There are four sets in total, Core, Leg, Arm, Hand. He always picks the three that have the lowest score so that way he gets 3 ten minute sessions but he gets through all four sets of exercises over two days. The four workouts started with only three exercises. He could not access the other seven until he had reached a certain level on the first three. After he passed a certain level a new exercise was “unlocked” and added to the routine. Each unlocked exercise was of increasing complexity and difficulty. Each of the ten exercises for each region also has ten levels. So that is 40 different exercises with 10 levels each for a total of 400 levels.

Once he reached level ten on his first exercise he got a gold star on his chart and his goal is now set to infinity. He still has to do that exercise as he cycles through a workout but he does not have to increase the reps. He likes to add one rep to his current score. Every time you beat your own score this little computer crowd sound cheers for you and it is surprisingly gratifying.

When we first got the FitMi he could not even manage the 10 reps for two of the exercises. One exercise was a leg lift and stomp for the affected leg. There is a video you can watch that explains how to do each exercise. The woman in the video said if you can’t do it, use your hands to lift the leg. That’s what he did. He used his hands to lift the leg. Surprisingly enough, as soon as he could do a few lifts, his brain seemed to remember what it was supposed to do and after only two days he could suddenly do the lift without his hands helping. It was like his brain “woke up” and remembered how to do it. He soon began progressing rapidly through the levels for the leg stomp. He has now reached level ten.

Click to access Updated-Exercise-Library-FitMi-RehabStudio-copy.pdf

 

My husband now has all the exercises unlocked. He has worked three/ten exercises in each of the four up to the infinity level. It is hard work. Even though he is doing these exercises while sitting down, he works up a sweat and he’s huffing and puffing doing over one hundred reps of the unlocked exercises.

Is it working? YES! The day we got the FitMi we walked down to the store where the truck was ready to deliver. We stopped at the post office. A pair of new slip on style shoes without laces had arrived because he was having so much trouble with laces. While I waited my turn at the store, I watched from across the street as he opened the package and then took out the new shoes, removed the old shoes and tried the news ones on. I was shocked and upset. It was painfully obvious he was really weak on the left side. His body was leaning over at 45 degrees. More alarming, he was not using his left side at all. Everything he did was with his right side except for swinging his left arm to use as a brace. He was letting the weak side slide farther into disuse without either of us realizing it. The FitMi has stopped that because he is forced by the program to consciously use his weak side.

The result has been a remarkable improvement in his overall balance and movement. Just today he made breakfast and was whirling from frying pan to cupboard to take out a plate and spinning back to pick up the spatula (with the weak hand) and then loaded my plate and handed it to me. It was all effortless, thoughtless, with no sign of left weakness. When we take the dog for a walk, the heavy left foot swing stomp is gone. He is now rolling his foot almost normally. He also used to stagger a bit so it looked like he’d been drinking as he walked before the FitMi. That’s gone. His gait is not completely normal but it is close to normal. To be fair, it was not normal before the stroke because of an injury with severe break and a big steel plate in the leg plus some arthritis in his knee. It is nice to not know if his slight limp is due to the stroke or the old injury.  He says the leg, especially the calf still feels kind of weak and numb, not entirely normal. He has to consciously remind the leg how to work. However it is working and that says a lot.

So would I recommend the FitMi? Absolutely with one important caveat. One of our friends had a heart attack and he bought a treadmill. He made many promises to himself to use it. It sits in his bedroom, a very expensive clothes rack. The FitMi is the same. If you aren’t going to use it, it will sit in the computer, a very expensive icon on your desktop. You have to be willing to persist in using it because it is hard work and it is all too easy to just skip it and do it later. My husband is really determined to get better so he’s working hard at it every single day. I have had to remind him some days and he quietly grumbles while he sets it up. I also sit with him and watch him work through his routine every third or fourth time to make sure he has the puck in the right orientation and so forth. I am honestly always amazed at how much he has progressed since the last time.

(I got no discount or special benefit from Flint Rehab for writing this.)

Stroke Recovery – FitMi and Music Glove

Due to the impending COVID-19 pandemic, my husband was discharged from the hospital after his stroke with no plans for rehab. I have since read it is very common for people who have pontine strokes to make really remarkable recoveries. My husband went from not being able to roll over to walking with the dog and I in two weeks so he seems to be following that pattern.

However we did notice he was having some issues with his balance, weakness in his left side, and fine motor control of his left hand. We could not do then usual routine of going into town for physiotherapy due to the pandemic lockdown. I went on line to try to find some exercises that would help. I found a product called FitMi and Music Glove from Flint Rehab. It was not cheap! After exchange and shipping and import duties and taxes we ended up shelling out about $1000. Our doctor had not heard of it before but when we told him about it he enthusiastically endorsed the concept and wrote us a prescription so we can claim it as a medical expense next year. The box arrived two days ago.

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Hubby dearest likes the music glove better than the FitMi. It specifically concentrates on the weakness in his left hand. He does a kind of air guitar as notes go by on a fret and if he hits it right he gets a cheery blip and some nice words. At first we thought the glove was defective because he could not make it go. I tried it and it was easy. That was a sobering outcome. We both knew his hand was bad but we didn’t realize it was THAT bad. He tried the dexterity test included with the Music Glove and we confirmed he has shocking lack of dexterity. He could only score just under 50% and one finger was a mere 22%. He has been faithfully working his fingers three times a day and he is improving rapidly even with only those few sessions. I don’t like to think about what would have happened if we didn’t have this gadget because we didn’t know there was a problem to work on. The brain has the most plasticity and ability to recover during the first three months after the stroke. While it is possible to get recovery and improvement after that, it is harder and sometimes less complete. Since the physiotherapists are unavailable until the lockdown ends…well I’m just so glad we have this Music Glove. Otherwise we might have missed the window.

He likes the FitMi less. It is more of a workout. As with the Music Glove the FitMi soon showed significant weakness in certain exercises requiring he use the left leg. Some of the leg exercises he could do easily and breeze through. However one in particular he couldn’t manage at all until he had practiced it several times. The FitMi has four areas of exercising including arm, leg, core and hand. The core one is particularly important because core relates to balance and he can’t turn suddenly or step backwards without feeling like he might fall. t’s also a work out all by itself. I made a video showing how it works while he does one of the core exercises. If he can stay motivated and keep up these exercises, this nifty well designed, easy to use gadget should make a significant difference in his recovery. The $1000 Canadian still smarts but if you figure in the cost of driving to town and regular physiotherapists it is probably going to be cheaper over the longer run.

(I got no discount or special benefit from Flint Rehab for writing this.)

Cat Provides Physiotherapy

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This one is weird enough I just had to share. In the immediate aftermath of the latest ministroke, my husband has had an irresistible urge to put his foot on something sturdy and push hard. This meant for a while we had the bed with the foot against the wall. He also used a large elastic band style exercise device to satisfy this rather peculiar urge. My husband described it as being not unlike an itch that only pushing would satisfy. If he didn’t have something to push the foot on, his entire leg would twitch and jump.

Each day he improves and we moved the bed back but he was having trouble with waking up at night with the twitch. He was also twitching without waking, which woke me up. If I rested my foot on top to his, he would stop twitching and settle back into a deeper sleep. However, it was hard for me to remain awake enough to keep up the pressure. Then the second morning after we moved the bed back, I woke up refreshed and happy. I had a good night’s sleep! I looked down and there was our cat, Klinger, sleeping on my husband’s foot.

Klinger is our fourteen year old Siamese cross adopted from a local cat rescue as a kitten. The cat often sleeps with us but he generally keeps to my side at the end of the bed near my feet. I think he likes my husband but there is also a clear rivalry with the cat acting like he regards my husband as a nuisance he has to put up with for my sake. My husband is the one who takes away my time with the cat. The cat is not allowed on my husband’s side of the bed and if he dares to try sleeping there, he gets a quick shove. It’s a kind of a detente between them. And so it was really weird to find the cat sleeping on my husband’s troublesome foot, radiating cat heat, quietly purring.

The next night I again had a good night’s sleep and every time I half woke up, the cat was right there, sleeping on my husband’s twitchy foot, softly purring. My husband reported he would get up and use the bathroom and when he came back, the cat would immediately resume the position on his foot. The cat seemed to have picked up that the pressure on the foot was stopping the twitch and the cat was keeping it up. This happened two more nights with the cat staying right there, sleeping on my husband’s foot, quietly purring, all night long. I can’t say how grateful I am to Klinger because we both needed the three deep long nights sleep his peculiar behaviour allowed us.

Last night my husband was so much better that the foot was no longer twitching and he could sleep well without the cat. The cat was back in his usual place sleeping on my side. My husband had not shoved him away. The cat had simply decided his services as foot weight/warmer were no longer required.

We expect dogs to be tuned into and help their humans in need. However I have rarely heard of a cat acting in such a deliberate manner to comfort a human in distress. What aspect of cat behaviour was triggering this gentle response? Cats do comfort twitchy kittens by lying nearby and sharing warmth. I have seen male cats doing it with the older kittens of females they share a pride with. Perhaps Klinger interpreted the twitchy foot as a need for that kind of comfort. Maybe the twitchy foot was disturbing Klinger’s sleep and lying on it made it stop. My daughter says the cat loves my husband and wanted to help him. Since Klinger isn’t talking, we’ll never know.

Alistor “Mad Eye” Moody has Left the Stage.

I love the Harry Potter stories and I have read each one several time. Alistor “Mad Eye” Moody is one of my favourite characters in the series. In the ER my husband looked just like Mad Eye complete with the tongue thing. Once they said they were admitting him, I headed home to arrange for the house to be watched and the neighbour (Bless Her!) to care for the cat, and to find a hotel room where Misty could stay with me. When I came back about five hours later, his tongue was back where it should be but the eye was still off doing its own thing. I had to bite my own tongue to stop myself from laughing out loud.  Even though it was very funny to look at, I figured laughing out loud at his state would be unkind. I was also concerned about how the grandchildren might react to seeing Grandpa doing this weird thing with his face.

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The other problem with the Mad Eye look is my poor husband was seeing double and being made nauseous and dizzy by that. The doctor ordered an eye patch. My husband refused to wear one with adhesive. They had none of the pirate type in the hospital.

I held up my finger and asked him to think hard about focusing. To my relief, the eye settled and took the proper place for two seconds before heading up to check out the ceiling again.

“You’ll get that back,” I told him. “Just work on focusing.” Over the rest of the day I kept trying not to laugh every time the eye wandered off on its own. It was hard for me to fight the giggles. The next morning I stopped in at three pharmacies in town but no one had a pirate style eye patch.

By the second day after the stroke the wild rolling had stopped though he was still seeing double. He also reported something I found strange. Looking at a blue grey chair he said he saw two chairs, one blue grey and one bright red. Since he’s partially color blind and can’t see red anyway, I kind of wondered about that description. How do you see a red chair when you can’t see red? I pointed out how much better the eye was looking and that pleased him.

The following morning he told me the chair was still double but it was now the same color, blue grey like I saw it, on both chairs. The eye was doing an occasional twitch to one side but was otherwise mostly focusing. The staff still wanted an eye patch saying it would help get rid of his double vision and improve his balance. I suspect the real reason was that not everyone finds a Mad Eye as amusing as I do and maybe the patch would also make other people more comfortable.

Yesterday, he looked normal again. He told me he was still seeing double but the images were very close together and almost normal. Our visitors assured him it was not really noticeable. This morning, he sat in his chair having his morning tea. He was looking all around the room, near and far away. He announced in a voice of great satisfaction,

“I’m not longer seeing double. The eyes are working together again.”

Of all the things that could go wrong after a stroke, the whole Mad Eye Moody look is one I could live with. I must say, though, we’re both relieved it is gone.

Years ago when I was into training as a geneticist, I was expected to attend many of the same resident lectures and rounds doctors in training had to go to. Biochemistry rounds conflicted with neurology rounds. I recall one of my supervisors shrugging and saying,

“You’ll get more out of biochemistry than neurology. Neurology is black box medicine and they really have no idea what’s going on in there. Treatment consists of whacking it with a drug or an electric shock to see what happens and hoping for the best.”

When I asked the doctor about the arrival of Mad Eye and his apparent imminent exiting from the stage, all I got was some incoherent muttering about the third trigeminal nerve and a shrug. The doctor then rolled his own eyes (together) to indicate he had no idea. I guess neurology is still a black box.

Back At His Computer

We got home yesterday. How are we doing? We have additional bars and supports in the bathroom as per the instruction of the occupational therapist. He has a seat to sit on while he showers that works well. The bed is in a new spot to better accommodate his walker. Each day he gets more function back.

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Our years of living in a travel trailer are certainly coming in handy in a strange way. Every time you move your trailer to a new location you have to rearrange stuff and adjust and adapt. You have to deal with small problems like the hose doesn’t reach the faucet or the electric hook up is opposite what you need. All those lessons in adaptation are perfect now as we adapt our home to this new reality. Aging is about adaptive living.

He has a pleasant, easy going, and patient personality. He says please and thank you all the time. He gives soft voiced gentle instructions. If I can’t do it right now, he is content to wait until I can. He gives reminders and suggestions in positive constructive ways. That makes this so much easier.

And his spirits are high. He wrote a paper in his head while lying there and now he’s getting his thoughts on paper, virtual paper that is. I suspect he might only get an hour or so before he fades and needs to have a nap but getting that hour of work in is more important than all the admonishes and advice of anyone else.

Right now my most annoying issue is that he always handled the laundry. Since the washer and dryer are in the basement, I have to take over that job, at least for now. I never used the new washer. It was a royal pain to figure it out and patience is not one of my virtues.

He actually lasted only 30 minutes at his computer and he’s having a nap now. I am going to go shower while he does. After that, I will start the next load of laundry and try to figure out how that the dryer works.

Recovery continues

I wish I could say everything is wonderful on the recovery front. It isn’t. We are not back where we were. We are in a holding pattern with very slight increments of improvement.

That being said, I do have a lot of positives to report. The most important is my husband has learned to pace himself with the carotid artery dissection fatigue. We have accepted it as a real thing and we have adjusted to account for it. For example, Tuesday evening is my husband’s pool night with some buddies. In preparation for the evening yesterday he rested a lot during the afternoon, deliberately taking a long nap and spending a lot of time lying in bed with his laptop doing things that require little or no mental energy. The result was he was able to enjoy the evening with the fatigue only starting near the end of the last game. Now I realize that we are very lucky that he can even walk over to the senior’s centre by himself and play pool. Many people after a carotid artery dissection simply could not. So I am grateful for that. However, if my husband has to miss his pool game because of post carotid artery fatigue or miss pool because he can not walk over there, he is still missing his pool game due to the dissection. So this adjustment is a major and extremely important one though it might seem very small.

It is the same thing with his work. He is retired but he loves continuing to do science to and mentor people.  We recently finished a paper linking code biology and our differentiation waves. He did all the final editing of adding the references and numbering the figures and the process of submitting it. He did it at a much slower pace than he would have before but it did get finished. He did not stay up all night and push hard to get it in on time at the last minute. That would have been the old pattern. This time he deliberately got it done well ahead of the deadline so there would be no last minute crush. Other things were neglected in the meantime but it got done.

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I am happy to report he is taking this recovery and rehab thing very seriously. He has been using his treadmill desk faithfully and dropped two inches from his waistline. That is the only risk factor he has for stroke that he has any control over. He doesn’t drink or smoke. He can’t control genetics or his age. He can control his weight and fitness. Plus he has started a ping pong club with his friend Frank Chen for Thursday evenings at the community centre. Ping pong is very good for working on hand eye coordination and forcing the body to use the slightly weaker left side. He was exhausted after the first session but it was a good kind of exhaustion. We even had a good turnout with seven people showing up.

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Our friends the Chens have a new dog and they have been bringing the dog over for play time with our Misty. Both dogs have great fun and it’s good for us when they wear each other out.

We have both suffered a blow to our sense of invulnerability and immortality. He could have died. The feeling of shock is wearing off but we are still both looking over our shoulders watching for the grim reaper. We went out to view some property with a friend and his family that they are considering purchasing. We were having such a nice time on this rural property that we did not keep track of time and we did not hydrate. We abruptly had to leave because my husband had a dizzy spell. The drive home took forever and I was panicking while pretending I was not. I knew rationally that this was likely a side effect of the meds. We had been warned about that. It was most likely not a stroke from the dissection. We got him home. The blood pressure monitor confirmed he had dropped too low, and we got fluids into him and he had a chance to rest and recover. I had my heart in my throat until he woke up feeling fine.

Afterward, everyone said how wonderfully calm I am in an emergency. I am faking it. Inside I was coming apart at the seams and I’m sure if I had used his machine to take my own blood pressure, I would have blown the thing up. Once it was all over, I had to go and vent to my good friend who is marvellous about listening and nodding sympathetically and just being supportive. Another lesson learned. No long hikes without hydration before, during and after. Hopefully, at the three months post carotid artery dissection check up we will be told the artery is healed and we can begin cutting back on some of the more powerful meds or reduce the dosage.

We got a bunch of money back from our insurance plan for the drugs he’s on. To our disappointment we only got about half back. It turns out that in Manitoba pharmacists can charge all kinds of extra things like dispensing and counselling fees and there is no regulation on these. It is a free market. We found out our local pharmacy is among those who double the cost of drugs with those additional fees. Who knew? Next month, Manitoba will finally join the rest of Canada in regulating those extra charges. Meanwhile, we are looking for a different pharmacy. We will now be shopping around for the lowest additional fees instead of going where it is convenient and the pharmacist tells a good joke or two. Another lesson learned.

Now those slight increments I mentioned. Before the dissection my husband would typically join me at bedtime around 11:00 am and then get up about 1:00 am and work until about 5:00 am and then wake up with me about 7:00 am. When we first got home from the hospital, my husband needed a good sleep with no working at night and about eight naps, some of them two to three hours during the day. In other words, he was sleeping pretty much all the time. He is now down to about four naps a day and most are only about forty five minutes though there is usually one that is over an hour. He is working at night for thirty minutes to one hour. Part of the improvement is simply he needs less sleeping which is real recovery and part of it he is getting the knack of pacing himself and resting before he needs to sleep. That is our small incremental improvement.

In the meantime, our world remains much smaller. A trip to town for groceries we can’t get from Frank’s little store in town and a short visit, left him worn out the next day and unable to accomplish much even though he slept during the one hour drive there and back. We have a regular dental check up coming up in a couple of weeks. That is also a one hour drive. We have our son, his wife and three grandsons coming for an overnight visit. I am a bit concerned about managing. Trips into Winnipeg are basically out of the question. Our world is going to be centred as much as possible around Alonsa for a while yet. Given all the support and friendship we have been enjoying, I can think of no better place for us to be stuck.

Yesterday Felt Normal.

Yesterday felt normal. That seems like a strange thing to say but all day yesterday I felt like life was as it should be and had been before the stroke. In fact, I didn’t think about the stroke even once during the day. I realized it as I fell asleep and I awoke contemplating how that happened. There are two main reasons. First it was cool and it rained off and on all day. It was also the Sabbath. A slow sleepy day of doing very little and relaxing and taking a long nap on such a day was entirely normal before the stroke and so the slow pace felt entirely normal yesterday.

The second reason is our new doctor told us to only do the blood pressure thing with the new monitor three days a week. We are to measure blood pressure morning and evening Monday, Wednesday and Friday. The blood pressure thing was what the doctors fussed so much about during and after the stroke. During the stroke his blood pressure had soared up to 220/180. The first twenty four hours after we got to the hospital he was hooked up to a monitor that sent telemetry to the ICU because whenever his blood pressure went over 180 on the top number they added drugs to his IV to bring it it down. For the first night they were giving him so much they were worried about accidentally stopping his heart. The blood pressure was the thing they continued to fuss over until he was released. It was such a relief when he got home that it went from 180ish to 140ish in 24 hours. (Hospitals are stressful places.) After the first two weeks and a change of one of the three blood pressure medications back to his old one, the one we knew worked, it dropped again to the 120ish range. Each time we take out the monitor it is a reminder of the events. When it reads as normal we have a sense of relief but there is still that reminder. Saturday we had no such reminder.

My husband is now back at his regular work although at half the pace. He has several collaborators from around the world. Many of them are students or junior professor types and some of them are from countries where the education is spotty or English is not the first language. Much of his time with them is spent doing things like explaining why you need a scale bar on a micrograph or how to better word an abstract for publication or how to write a grant. He also spends a lot of time converting the universal language of science, bad English, into native English (albeit American English.) It is not just junior people. He translates for scientists who are senior in ability and expertise to him in their fields with whom he collaborates. He does all this via Skype and Google Hang Outs and similar communication methods. Prior to the carotid artery dissection, he dedicated Mondays to collaborations and he would literally spend 12 hours giving each person one hour of undivided time. He has been having on line meetings with a few people this week where projects are urgent and his presence cannot wait and that has been going well, even at the slower pace. Tomorrow he begins his regular mentoring day once again. He has switched from one day of twelve, hour-long blocks, for two days of hour-long blocks interspersed all through Monday and Tuesday with down time in between. He will not get as much done of his own writing on Tuesday but he thinks he can handle the mentoring/collaboration this way even with the fatigue. He has warned everyone that if he gets too tired they will have reschedule. They are all being so supportive it is heartening.

We missed the wild Saskatoon berry picking season we always took in during previous years because of the stroke. To our delight and gratitude a group of young people in the community picked pails and pails of a bumper crop and shared with us. I made Saskatoon pie and it was heavenly. Even if there wasn’t enough to make jam it still felt so normal to eat Saskatoon pie in summer. Bless those kids. I’ll bet they have no idea how much they brightened up my special normal day with their small gesture of kindness.saskatoon

On the home front we have always split the household chores. He makes breakfast and I make supper. He does the laundry, I do the dishes. We share the lawn mowing. He has been too tired to do his share since we got home. Because it was raining and it was a slow sleepy day, it didn’t matter. He was able to do things indoor as he normally did before. He took a mere four naps/rests instead of the typical eight to ten he was doing. And we even managed to get a nice long walk with the dog in-between rain showers. I am hopeful this indicates an upward recovery trend. It felt so good to feel normal.

 

 

 

Lover to Caregiver and back again.

I can’t really claim I have been transitioning between the two states very well. Yesterday we went for lunch to Riding Mountain National Park. The park is only forty kilometres away but once we get to East Gate, we have another thirty five kilometres of extremely challenging roads to get to the town of Wasagaming. In the past, we have loved this road because we always see some wild life and often it’s a bear. The road goes up several switchbacks and then continues through beautiful wild country with small rivers and wildflowers, little lakes and wide marshes. When the rain is heavy, the road can get washed out. It was raining heavily. Plus in the back of my mind was the fear. It was a seatbelt accident that caused the carotid artery dissection so I worried the whole way even with the new seatbelt cushion and head rest. When a deer ran out in front of us crossing the road I didn’t gasp at the beauty and grace as I have in the past. I cursed the need for a sudden stop. He slept through it all.

We had a lovely time visiting friends and eating lunch. I watched to see if he got the fatigued look. He did, but when I asked if we should leave early he assured me he felt fine. We ran into our son, daughter-in-law and youngest of our two grandsons and had a happy reunion at the art gallery where our luncheon host had her work on display. What a bright spot of joy that was! We stopped for gelato. He was the charming host insisting on paying for everyone in our group. It was good to see my lover back. We left and started the drive back. He fell asleep slumping over the seatbelt and I woke him immediately and insisted he put down his head rests and not droop over the seatbelt. He didn’t listen. I had to tell him twice. I don’t like that. He is an adult. His wife should not nag him. His wife should not have to remind him how to behave. Lover to caregiver again.

He perked up on the drive through the park after a short nap. My lover was back. We enjoyed the drive through the park back to east gate together talking like the damned dissection had never happened. We stopped at the overlook to take a selfie like the damned dissection had never happened. This spot has many fond memories of many fine trips with friends and family. It’s sort of a tradition to stop here and look towards home. It was just like the damned dissection never happened. Once we were out of the park, he slept all the way home, not even waking completely when I stopped to fill up on gas. Once home, he was cranky and out of sorts. His computer wouldn’t start properly and he was angry and ready to spend hours on the phone with Apple support even though he was still exhausted. I stopped him. I fixed the problem. It was trivial. He should have known that fix but he was too tired to think straight. Afterward he apologized for being cranky.

Today he complained he is too tired to do much of anything. We go out for a six hour spell for an easy lunch with friends and a short stop at an art gallery and a nice drive and he needs the next day to recover. I tell him it’s okay. I tell him this is normal. I am patient and kind. I remind him this three day camping trip he hopes to make with friends in a couple of weeks is likely not a good idea. He’s not recovered yet. He agrees. Again I am left feeling like his caregiver not his lover.

This is normal after a carotid artery dissection they say. This is the way it will be until he recovers. This may be the new normal. I may have to live with these odd moments of caregiving in order to have the sweet moments remaining with my lover. It is a price I am willing to pay even if I would prefer not to. How many widows would pay far more for far less? Still it would have been better to not have to pay this price at all. it would be better if the damned  dissection had never happened.

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