Random Thoughts of a Disordered Mind


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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.


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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


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Last Full Day of Rehab

Today was very much like every other day here, except that I know I’m leaving tomorrow. Yayyy. I was awake and dressed by 6am which I certainly hope not to be doing at home if I can help it. Breakfast was our usual fare of eggs, bacon, toast (for some), cereal (for some), and fruit (for me). I’ve eaten more breakfast eggs in the last 5 weeks than I think I’ve ever eaten in such a short time and am looking forward to fruit and yogurt or fruit and oatmeal.

I walked to PT as usual (175 ft), did standing leg exercises at the parallel bar, then seated leg exercises in the chair, thirty “sit to stand” exercises from chair to walker, followed by 15 minutes on the OmniCycle. I ended up with mat scooting and then transfer practice from chair to mat and back again. When the folks at the Olympic Center first asked me if I could do that, I looked at them as tho they were crazy because, hello, I couldn’t stand up. You can’t do a standing turn/pivot if you can’t stand. But today I could do them and the therapist told me that in outpatient therapy, I’ll be doing more things like that because they’re what I’ll be using in Real Life. Hmmm. Makes me wonder why we didn’t work on them earlier.

After lunch I was back for OT, with 15 more minutes on the Omni Cycle for arms. But then we did something new – side-stepping around the parallel bars twice to practice moving the way I’ll move at the kitchen counter. That wasn’t particularly hard which is a good thing since I won’t be wearing a gait belt or having someone monitor me in the kitchen. The therapist and I talked about how I’ll be moving around my apartment, using the kitchen, etc., to try and identify any problem areas but we think I will be fine. Then I did a few sets of “move the rings from side to side while wearing arm weights” and walked back to my room (175 ft).

I leave rehab for my apartment at noon tomorrow, and it will be busy before that. For one thing, I’m getting a shower and a chance to wash my hair. I need to pack up my stuff which really won’t take that long since everything is already in this room. But I also need to get official discharge papers, hopefully have a discussion about outpatient therapy so I know how that will work, and get my meds from the nursing staff. My brother and sister-in-law will be here about 11:30 to load up my belongings and we’ll head down the hill to home.

I can’t wait.


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In the things could be worse department

My rehab next door neighbor got word today that she is being discharged on October 28th. She’s been here since mid-August, after a stroke left her with right side motor issues as well as speech difficulty. She doesn’t know where she will going from here. She lives in a trailer that doesn’t have doorways wide enough for her wheelchair to navigate, and she needs some help with dressing and toileting. I’m not sure she’s able to deal with meals for herself just using her left hand. Her son hasn’t been especially helpful from what I’ve seen, and he’s her only family. Her money will only cover a few months of assisted living. I’ve seen the helplessness in her eyes, and the acceptance that things will be done that she has no control over or real input in solving. She worked as an ER nurse and understands what’s happening to her body even as she doesn’t know what happens to her next. It breaks my heart.

She’s not the only one. There are others in my pod who will be going or returning to assisted living after their limited time here in skilled nursing. I’m not sure if they are really aware of their situations; some talk in non sequiturs that are very hard to follow, if at all, and never about their condition. We also don’t see a lot of visitors here so I don’t know what kind of support they may have.

I’m so grateful that my body responded to therapy beyond what I thought possible at the beginning. I can walk limited distances, dress myself, use the bathroom, and wheel the chair around with dexterity. When I leave here, I’m going to a home that’s spacious and designed to accommodate my wheelchair and walker; even while I have lots to figure out and set up, I know it will work. It’s paid for, it’s mine, and I have funds in the bank to take me into my retirement as well as cover my immediate care needs. Everything above the waist is working just fine – brain, memory, speech. I have supportive family and a wealth of wonderful friends who make all the difference.

None of us expected to be here. We never could have planned it – you can’t plan it, either. You get hit by a car or a stroke or have a fall and boom, the doctor says you need rehab before you can go home. You could be here for a week or for months. You don’t have a “go bag” at home full of things you know you’ll need because, hey, you don’t know you’re coming. You don’t know what your body will do and what will cause pain or just simply be hard. Make it easier on yourself by having solid medical insurance coverage, and a medical power of attorney of record who can speak for you if you’re not able to speak for yourself. And even if you can speak for yourself, you’ll need a sounding board to make sense of options. They may not solve the problems, but they can help things from being worse.

Image credit: Photo 40802191 / Worse © Andreykuzmin | Dreamstime.com


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All Manner of Things Shall be Well

If you know me at all, you know I’m someone who values organization, structure, and order. My brain is wired for this and it’s where I’m comfortable. Being a librarian, especially a technical services librarian, was a perfect fit. Chaos offends and sometimes scares me because I don’t know what to expect, so I can’t be prepared.

Well, I haven’t been prepared for much these last months. I do like the structure of knowing when I have therapy, and knowing when meals are. But I can’t plan next steps for therapy. It happens when it happens, whether I’m ready or not. The therapists know and have a plan, but my body will do what it will do or not do and they adjust accordingly.

Friday I go home, and I’ve been planning out what needs to happen, moved, opened, sorted, tossed, etc., as though that will help me be in control of it – but I’m not. This is another thing that has to just happen with some guidelines and milestones on the way. The MDS coordinator told me today that I’ve planned this all out more than some of them in the business can do, but that I need to be careful not to go overboard and talk myself into panic if I leave something out.

It’s going to work. I can go home and it will all be fine. If there are things left unplanned, we’ll work them out as we go. I use the royal “we” here because it’s mostly me, but I promise to ask for advice and help instead of getting just stuck in a panicked place. My brother is helping figure out the details of legal stuff needed to get my car sold. Me, the reader of fine print, didn’t catch a bunch of important things, but he did.

I’ve learned to live in the moment even if I was stressed at not knowing what was going on. Hmmm, maybe I didn’t learn it all that well but I lived it. I can do it again. No panic needed. “All shall be well, and all shall be well, and all manner of thing shall be well.” (Julian of Norwich)