Solitary confinement

This post has been running through my head since the beginning, but I've hesitated to write it. More than anything else I've written, it sounds whiny and selfish. In fact, it is whiny and selfish. But this blog is meant to be a way to try to purge my mind of the negative thoughts and feelings that keep me from dealing with things as they are. I can't say that's actually worked; but still, I write.

I'm a solitary person by nature, and possibly by nurture. I don't cope well with constant interaction with other people. I need a lot more alone time than most people I know. Which isn't to say I don't feel lonely. I do, quite often. I've never really found the right balance of solitude and companionship in my life. But I can't think of a lonelier time than the past fifteen weeks.

That first week in the hospital, while Mom was in ICU, seemed to last forever. I sat in Mom's room from the time visiting hours began at ten o'clock until near the end of the day shift, usually between five to seven o'clock. Sometimes Mom knew I was there, sometimes probably not. Mostly I was there to get what information I could while the doctors were there, and to answer their questions, since Mom couldn't answer them herself. Depending on how busy the unit was each day, and how proactive the nurse assigned to Mom was, there would also be many visits from her or her assistants. I found myself impatient for the arrival of some specialist with questions, a new flock of interns trailing after their mentors doing daily rounds, or the nurse coming in to check something. They all seemed to me like visitors from the world outside Mom's room, and I clung to those moments of contact. Going to and from the hospital, I felt like I was traveling in a bubble, separated from everyone around me. When I got home, I had people to update, on the phone and by email; but mostly they felt like just one more item on the to-do list. My only sense of companionship came from Twitter, of all places. Using replies to keep the conversation mostly among mutual friends, I cast out my pleas for a lifeline or two. And these friends, some of whom I've yet to meet in person, kept me afloat.

The second week was worse. Mom was moved to the telemetry unit, a step down from ICU in the intensiveness of care. There were fewer doctors asking or answering questions, fewer visits from the nurse, and no flocks of interns. I felt abandoned. That's actually the word I used in my head. Abandoned. I was in Mom's room fewer hours, since I had to go back to work and visit after, but my time there felt longer. The weekend in between I had some company. My sister came up to town for several hours one day. My closest friend came too, and stayed with me a couple days, helping me with the to-do list in a big way. Their company was much needed and appreciated. But in some ways it made the return to being alone harder. That pressure thing again, I guess.

Recently, I've had another sister and one of her sons visiting for a few days, and a longer visit from my friend. Again, the space they left behind seems emptier for having been filled for a bit. And I wonder why I ended up this alone. I know my long-distance friends are there for me, and their support has been beyond measure. But still...

In the midst of all my self pity, I try to remember how alone Mom must feel, unable to even communicate, to make herself understood. I feel utterly alone when I'm with her. Does she feel the same way when she's with me? And what about all the times I'm not there at all? I don't know how to fix this for either of us.

Stuck

The care plan meeting this week went much as I expected, but the conclusions were still hard to hear. The bloodwork showed some things that need to be addressed, but nothing that would account for Mom's lack of progress. The new CT scan has yet to be done. But the consensus is that Mom has plateaued, which means she's recovered about as much as she is likely to. Not that further recovery is impossible. But from here on, no major improvements are expected.

This is devastating news. In terms of quality of life, I'd have to say that Mom's place in that continuum is pretty low. I'm sure she would say so too. Her manner seems more and more miserable each time I see her. To think that she's more-or-less stuck in this place is almost unbearable.

But bear it, we must. Now I need to turn my attention to finding a permanent nursing home for Mom. The subacute facility she's in now is short-term only. I have a list of homes affiliated with the facility; and since the current place has been good so far, I'll start my research with that list. I've talked to Mom's primary care doctor, and he'll give me his opinion of the places I end up considering. Fortunately there's a lot of information online too. But it's going to be a difficult decision, no matter what help I can get.

Meanwhile, I'm feeling pretty stuck myself. I can't be so selfless as to ignore how all this will affect me. These last several months, I've been feeling that my current job isn't one I want to keep much longer. More recent events have only increased my temptation to job hunt. My responsibilities to Mom already made me feel that my choices were limited, especially if moving were required. Now, I don't see how I can move at all. I'm also loosing more time and energy, physical and mental, to do the kind of skill building I need to move my career in the direction I think I want to go. Knowing that other people manage to balance all this and more doesn't help with my own ability to cope just now. I hope I can at least get myself unstuck mentally, and soon. The rest? I just don't know.

Stuff and nonsense

One advantage I've had in this whole situation is the ability to take my time going through my mom's belongings. We had separate apartments in the same house, and I already paid the rent for both anyway. I can't imagine having to do something about Mom's stuff on a short deadline, or long distance. I think I would have completely cracked before now if I had to deal with that too.

Over the past three months, I've gradually gone through Mom's apartment, focusing as much as possible on one category of stuff at a time. Clearing out all the food was the first priority. Then finding, organizing, and taking action on all the paperwork. It's taken the entire three months to do that. I kept finding stashes of paperwork all over the place. Fortunately I didn't come across anything that absolutely should have been taken care of right away, but it was so very frustrating to keep finding something important in among magazine clippings, take-out menus, and all kinds of junk mail.

Then I had to deal with the really difficult stuff. Which pretty much falls under the category of Everything Else. Once again, it felt wrong to be making decisions for Mom, without her participation or knowledge. When my grandmother died, there was much less time to empty her apartment. But decisions could be final. We didn't have to wonder if Grandma would ever need that stuff again. Or be afraid she would miss any of it. Going through Mom's stuff means thinking about things she probably won't be able to do again. Wondering about what her quality of life is going to be.

Another thing that was different about clearing out Grandma's things is that several family members were working on it together. We could share memories as we worked. It was bittersweet at times, but in many ways it was kind of fun. None of us are very good at keeping in touch, so the time we worked in Grandma's apartment was spent catching up with each other as well. In contrast, working in Mom's apartment these last three months has been almost unbearably lonely.

This last weekend my dearest friend drove up to spend time with me and help me go through all the stuff. The help she gave me went far beyond the physical work of sorting, packing, and schlepping things to storage. The company of a trusted friend got me through the loneliness and the worry. With her support, I could even make decisions about the really difficult stuff, like Mom's yarn stash. I could never have gotten so much done without her.

Two steps forward, two steps back

Up until late January, Mom seemed to be making good progress. She was working with physical and occupational therapists up to two hours a day most days. Walking again was never expected, but she got to the point where she could move herself in bed, sit up with assistance, and even move around a bit in a wheelchair. She was communicating much better, able to say recognizable and meaningful words and short phrases. She usually couldn't write full words, but her letters were becoming clearer. And she seemed to understand most of what was said to her.

But the last several weeks she's been getting worse. She hasn't been cooperating with the therapists as much. Sometimes she's just too groggy to work with them, but often she really seems to be refusing to work. The therapists and I have talked about ways to try to motivate her, but most of what Mom enjoys is beyond her right now. Reading and knitting certainly aren't options.

She's also been slipping in terms of communication, both speaking and writing. Again, she really seems to be giving up. Oftentimes, I can't even get her to answer yes/no questions. When she does answer, it's frequently the wrong answer. I always ask her if she's exercised that day, and she'll say "no" when I know the answer is "yes". I can't tell if she's forgotten whether something has happened, or if she's just picking the wrong word. And she's still screaming. A lot. Trying to gently talk her through the screaming spells never works. I think sometimes she can't stop, even if she wants to. The parts of her brain that regulates emotions and impulse control have probably had a lot of damage too.

After I talked with Mom's primary care doctor about this reversal, he set up an appointment with a rehabilitation specialist. I went with her to see him yesterday. The specialist is recommending tests to find out if there are physical reasons for Mom not doing as well since January. They'll do bloodwork and a new CT scan of her brain. He also recommends that some of her medications be adjusted, so she can have the benefits of the antidepressants, pain killers, and muscle relaxers, without so much grogginess. After that, the specialist and her primary doctor will consult with each other and decide where Mom is in her recovery. Their focus now is to see if any of her negative symptoms are reversible, and if she's already made about as much progress as she's going to. For most stroke patients, most of the recovery takes place during the first six months. It's been three months since Mom's stroke.

I hope some of the answers are available next week. I have a care plan meeting scheduled with the staff at the subacute facility to talk about what to do after Mom's 100 days there are up. No matter what happens with the tests and consultations, I know that it's most likely that she will need to go to a long-term care facility. But I'll feel a bit more confident about some of the decisions I'll have to make if I know more about what to expect in terms of recovery.