It’s Been Quite a Year

I never dreamed of a year like this one when I was planning for retirement. I left Yale Law Library in October 2015 and within a week, left for Texas. Not long after I got here, I found myself redesigning the community church website and then working there for five years. Last August I left that job when I realized I needed all my time to concentrate on learning to walk and live independently. I was right that it would be a full time job, but it’s certainly not what I expected to be doing when I wasn’t getting a paycheck.

I had spine surgery a year ago today that arrested the severe spinal stenosis, but it didn’t reverse the damage that had been done. I was very scared of what the future would look like when I was in rehab and not able to even stand up or go to the bathroom without two people helping me. I didn’t think I would be able to go back to my brand new apartment or take care of my beautiful floofy kitties that I loved so much. I didn’t see any light in the tunnel at all much less a way to get out of the tunnel to something beyond that.

I learned that I need to do what I can for myself but also recognize when I need help and ask for it – and then accept the help that is offered. I’m stubborn and independent and am used to living on my own, without anyone to depend on to help with things around the house. I’m still alone but there are people right out my door who will come if I ask, who will notice if I don’t show up for things. There are sweet friends who took care of my kitties when I was gone for so very long. That I can hire people to help me with personal care but also therapists who can teach me how to do some of those things for myself. The day I was able to do a shower on my own was a great day indeed even if it took me an hour.

And I learned that I wasn’t limited to hoping I could stand up. I can walk again, thanks to my wonderful physical therapists Veronica and Grace. Oh, I’m still using a regular walker with its cheetah print tennis balls but have a bright red rollator ready when I have the balance and strength to work on using it. It should be an enormous help since I’ll have a place to carry things from place to place (which is hard to do in a wheelchair) as well as sit when I need a rest. I can walk about 3/4 of my hallway and back again without stopping, and am working up to doing the entire hallway soon.

But the reality is that I probably will not be able to ditch the wheelchair or walker. There is a lot of nerve damage from the stenosis that won’t reverse. I’m not as worried about it as other people seem to be, probably because I’ve been in the chair for a year now and know what I can do. Caring for the cats – food, water, litter, cleaning up vomit – is best done while seated, and while I might be able to do that with a rollator, I know I can do it from the chair. I love them dearly and need to be sure they’re not shortchanged by my limits.

I’m so grateful for my friends here at Meadow Lake and for its accessibility and spaciousness. I couldn’t have dreamed up a better place to be with my physical limits. And I’m especially thankful for the friends I visit with online and by phone if not in person, who keep me connected, interested, and engaged. You are my tribe and I love you.

Figuring Out Home

This isn’t as easy as I’d hoped it would be. Oh, I know it will get better. But I have things to think about that I hadn’t expected and need to process. I’m learning that there are many things I cannot do easily, including carrying things from room to room, particularly when in the chair. The walker has a tray/caddy thing on it but it can only handle relatively light items. Doorways are wide enough for the chair but I have to approach from the right angles or my right hand crunches into the door frame (I have some interesting bruises). Rolling the chair on the carpet in the bedroom is a lot harder than rolling it on rehab carpet or carpet in the hall, especially when I’m going backwards. Manouvering the chair to let me clean out the litterbox is tricky. I may need to remove the bedspread and just have a blanket on the bed because rolling over the corners stops me in my tracks.

Feeding the kitties is tricky. If I move the footrests on the chair, I’m close enough to the ground to put the dry food in their bowl, but am still a wee bit too high to pick up the wet food bowls. I can put the bowls down but getting them back up is the problem. I’ve had a spotty record with it using the reacher tool; sometimes it works, sometimes it doesn’t, and when it doesn’t, I can’t clean it up. I’ve learned that I can add water to their water bowl using a water bottle, but if they drop a toy in the bowl (and they do like to “baptize” their toys), I can’t pick up the bowl to wash it out.

The bathroom has grab bars but the one by the commode is too short for me to feel really comfortable, so it helps enormously that the toilet itself (which I had installed) is very tall. That makes me more stable when I stand, especially without shoes. I’m going to ask maintenance to add a vertical grab bar outside the shower that I can reach when standing up from the toilet. I also have other projects for them, including hanging up all the art. When my things are on my walls, it will definitely feel more like my space. I have more art than I have walls but maybe I can trade some things out now for variety.

I’ve hired someone to work with me 10 hours a week. She has been helping someone else here who recently passed away, and I like her energy and personality. I don’t need medical help, but I do need help with showers, laundry, household projects, and running errands that I can’t do now, such as picking up grocery curbside orders or making a quick run to Walmart for something. Lots of things in the house are very confused right now and need to be moved around once we figure out what they are; she was a big help this morning with the first things we tackled. I think she will work out fine and I will enjoy her company.

My new routine will involve going to therapy three times a week in the afternoon, but my new therapist is on vacation today and Wednesday so I’m starting late. Today there was just lots to do, and Wednesday I’m going to a new residents orientation and lunch that may run into my scheduled time. I need the orientation, though, so I need to do that for sure. I have home exercises to do here for both upper and lower body, and I have a plan to try and fix the hated AFO’s AGAIN. This time we used Goo-Gone to get rid of every bit of old glue and I’m going to reattach the straps with my Gorilla Glue tape and give them time to cure rather than using right away. Hopefully this will make things last longer – it doesn’t feel safe to walk around when the straps drop down around my ankle.

Oh, and about the screen for the porch that still isn’t up. We realized on Saturday that the screen they were planning to put up was actually solar screen rather than pet screen, and it’s definitely not what I wanted for that location. I do not want the screen to block the view from my living room of grass, trees, and flowers. I had a chance to talk with the guy putting it up (he was hammering the screen up on the sides on Saturday) and we’ve come up with another plan. He continued with the solar screen on the sides of the porch, which will give me more privacy from my neighbors, which will be lovely. But instead of doing some sort of giant screen in the front, he’ll do three panels with dark screen that will run from the top of the iron railing down to the concrete; three panels so one can be for the gate that will open out in case of emergency. I have to pray that Ellie won’t try to escape over the top but if I don’t have furniture right next to it, I think I’ll be fine. Say some prayers for that, too. Ellie is incredibly curious.

I’m Finally Home

I flew the rehab coop yesterday and finally, finally, made it home to my apartment and my cats. My brother and sister-in-law were totally amazing – I couldn’t have done this without them. Because not only was I coming home with all my accumulated stuff and needing to navigate wheelchair and walker, I also had to do it amidst the chaos of not knowing where anything was and with things still boxed up from a move many weeks ago. Moving is confusing at any time but this was crazier than usual.

All of my boxes are now unpacked and shelves are filled, though not necessarily where things will actually live. It takes time to figure that out but you need to see them to know where they should go. The next big thing still to do is sort out art and get things up on walls so it really looks like my house. I have many fewer walls here than the last house, so I think I’ll have some things left over, even though I gave away so much before I moved. Actually, I have way too much stuff period. But right now I have things leaning against walls where I think they’ll go so I can live with them for a bit before things actually go up.

The cats, of course, were a bit confused by all the activity. Emma spent a lot of time under the bed or peeking around chair legs. But she and Ellie are more socialized by having several different people take care of them over the last weeks, and they quickly started investigating it all. Last night was a two-cat night, with one on each side. They were almost as glad Mommy was home as Mommy was.

I haven’t done much walking today, but did spend a lot of time standing up from chair to walker as I learn to navigate my space using both. I’ve gone from chair to kitchen counter, too, which gives me access to many things like dishes, glasses, and the sink, but doesn’t feel very stable for any kind of bending. Note that feeding cats involves bending, so this is going to be creative.

My walker now has a basket and a separate tray/caddy thing (the two are used separately) to help me move things around from place to place, say, with food from fridge to counter and counter to table. And I’ve learned that although it’s more economical to buy food like yogurt in larger tubs, individual portions are easier to move around in a walker. Note to self for the next grocery run: buy individual yogurt servings.

Navigating the apartment is tricky because of the cats. Rehab walking didn’t include floor obstacles with floofy tails. Here I have cats who don’t move out of the way until the very last minute. I’m glad they’re not afraid of the chair or the walker, but wish they would just move already so I can get by. It’s hard enough trying to back up and turn around on the bedroom carpet or in the bathroom.

I didn’t sleep well last night because a bed rail we installed (and by “we” I mean my brother and sister-in-law) was a bit too high and I could feel the rods through the mattress. Actually, I felt them in rehab when we tried this, too, but I thought it was because of that bed. Apparently not. I ended up sleeping in the recliner with the cats alternating in the lap. Not great for sleeping, though. The bed rail is only there until I get the new adjustable mattress base which is due in two weeks. Tom made some adjustments this morning and I’m hoping it solves the problem. I could really use the sleep, especially if both cats decide to join me.

The other big project of the day was selling my car. I got a quote from CarMax that was $4,000 over the BlueBook value, and it was too good to refuse. But since I wouldn’t be actually going with the car, my brother drew up a limited Power of Attorney for the sale which we had notarized by a kind friend late on Friday. The sale itself went very smoothly. It’s the first time in my adult life that I’ve been without a car so it feels a bit weird, but it’s a logical move and will save me pots of money.

So many people helped me get here but I especially want to thank Carolyn, Jane, and Lana. They took care of my cats for weeks on end, opened boxes and put things away so I could move around easily in the wheelchair when I got home, returned equipment to Suddenlink, brought me clothes and other stuff while in rehab, checked and brought me mail, got my car battery replaced and took the car for repairs. I couldn’t possibly have gotten through the last 10 weeks without these three and all the other wonderful friends who visited, called, wrote, and prayed for me. I cannot ever thank you all enough for your love and care. But I will pay it forward, with love and appreciation.

Image credit: Photo 84025702 © Feverpitched | Dreamstime.com

Escape from Rehab

I escaped for an hour today and hitched a ride down to the main building when I had a break from rehab. The nurses gave me permission so it wasn’t really an escape, but it felt like one. My girls were happy to see me and Ellie came running when she heard me instead of eyeing the wheelchair with suspicion. Emma of course was under the bed, but it didn’t take her long to come out. I gave them treats, cleaned out the litterbox, and brushed their furry little selves – and picked up a zillion cat toys that they’d gotten into and practically destroyed. Methinks more toys are in order. Then I could just throw out the nasty ones.

I didn’t skimp on rehab, though, and whisked back in good time for the afternoon OT session. PT was in the morning, and I walked to and most of the way back for 275 feet total. Between OT and PT, I did 30 “sit to stand” exercises from wheelchair to standing with the walker, which I’ll be doing a lot in real life, as well as bending practice. Other than that, it was the usual stuff. I’m doing much better at the standing leg exercises. The right foot still feels super heavy and it’s hard to lift it for marching (blech) or kicks, but I’m better than even last week.

I also did some Storyworth writing. At the end of my year of answering questions, they will send me a book of everything I’ve submitted, including photographs, which is pretty cool. Today I wrote about whether I had wanted to have children. I’ve been trying to get as many stories in as possible and this rehab time has messed up my schedule of trying to write one a week. Even so, I now have 56 stories that cover things from childhood homes to vacations to college years to work life and memories of my parents and grandparents. It’s been good to have a reason to think about some of these things. Remember, my reason to do this in the first place is to be a resource when my memory starts to fade. If you’re interested in reading any of my stories, let me know. Maybe it will spark something for you to do yourself, or to give to someone else as a gift. It’s definitely been worth it for me.

Image Credit: Photo 44651192 © Bowie15 | Dreamstime.com

Home visit – with cats!

I went back to my apartment today after seven weeks away. Okay, seven weeks and one day, not that I’m counting. Alas, I couldn’t stay; I was there with my physical therapist to do an assessment of how it will work for me when I do go home – what do I need to get, move, rearrange. That was the purpose but I was distracted by wanting to see and love on Ellie and Emma, who were not at all sure about the wheelchair but were lured by Mommy’s voice and familiar smell. It was hard to leave them.

The best part of the apartment is that there really isn’t that much that we have to do to get it ready for me. Some furniture rearrangement, moving rugs, seeing if we can get taller legs for two chairs so they are easier for me to transfer and get out of. Putting something under the recliner to keep it from moving when I’m getting up or down. The shower chair is good; I need a toilet lift with arms to help me get up, but not a drop down grab bar. Clothes in the closet need to be rearranged so frequently worn things are on lower bars. The kitchen is workable though the microwave over the stove might as well be in Siberia. I’ll talk to the PT tomorrow to see what I forgot and/or what she noticed that I didn’t, and what that means for what’s left of my recovery before the move. Of course, there will be continued work AFTER that, but it will happen in familiar territory.

What’s hard now is the open endedness of time here. In the hospital, it was clear that I’d be there until surgery, then a few days, then rehab. Olympic Center rehab gave me a defined discharge date at the end of the first week, so I knew how to factor the time. But this place just seems endless because there is no idea when I can leave, although I know it’s coming. It could be so much worse, I know. My next door neighbors are not in good shape and may not be getting better fast enough to stay longer than whatever Medicare decides is their alloted time – and she’s not sure where she will be going after that. Me, I know I have a great apartment with excellent adaptive design and two beautiful cats just waiting for me. So I’m going to try to stop complaining and just concentrate on getting stronger.

In OT today I had to step up on a shallow stair. Actually, not even step UP, just put my foot on the stair and put it back. It was impossibly hard and I cried at how hard it was to do something so simple that I took for granted two months ago. I think I’m doing well and then something like that just stops me in my tracks. I’ve come a long way but there is such a long way to go and I can’t give up just because it’s hard. I want to get back every bit of functionality that I can, which means working really hard all the time. It’s tiring.

In PT today, in addition to walking and leg exercises and the bike, I tried using a bright pink rollator walker. I see so many people use them but had no idea how very light they were to use and how FAST they go, which means using the brake to slow it down so it doesn’t fly away from me. I didn’t think I would be moving to a rollator at this point in my recovery – my walking isn’t that steady – and am not sure I’m comfortable with it, even while having a rollator would be a lot easier than a wheelchair and a folding walker. Well, it will be easier after I learn how to use it properly. One little spin in the hallway doesn’t do it by itself. But again, it’s a step. At least I don’t have to try to step up on it.