It ends

Yesterday afternoon, Mom died. Five months and two days from the day she had the stroke. She developed pneumonia the week before. In the middle of the afternoon, her doctor called to say the regular antibiotics weren't working. He wanted to confirm with me that we didn't want to try more aggressive treatments. I agreed that continuing would be against the spirit of Mom's living will, so we decided to continue with the current treatment, keep her comfortable, and wait. I left work right away to visit her, and spent an hour holding her hand. She was beyond sleeping at that point. I went home to start letting family know what we decided and that the end might come soon. Less than two hours after I got home, I received the call from her doctor.

I'm not sure how I am at this point. Right now I have the distraction of a long to-do list, as I did when she first had the stroke. I spent most of last night on the phone, letting people know what happened. Today I meet with the funeral home to decide what to do next. I've long had general instructions from Mom on what she would prefer, but there are still a lot of decisions to be made.

I've been saying goodbye to Mom for a long time now. I know she didn't want to continue suffering from this stroke. I could only pray for God's mercy, and accept whatever form that mercy took. There's still grief, like I'm starting over, near the beginning. Maybe taking a slightly different path of grief. But there's also relief. For her and for me.

Wrecked

Mom's been in the new nursing home a bit less than two weeks now. I've had a care plan meeting with the staff; and overall, I think I'm comfortable with the care Mom's getting there. One thing I like is that each floor has a common lounge area. Every day, Mom is dressed in her own clothes, put in a chair, and taken to the lounge area for at least a couple hours. I don't know how much she's interacting with the staff or the other residents. The one time I visited during her lounge time, she was mostly sleeping. But that tends to be true more often than not.

Several weeks ago I was talking to a friend about how often I visit Mom, and about my feelings of guilt that I don't visit more often. My friend asked if Mom even knew when I was there. It turned out that she thought Mom was all but vegetative, based on my descriptions. I felt terrible, realizing how negative I must have been to give her that impression. But at the same time, I knew that what I had told her reflected how I felt. Most of the time, I do feel that my mom is gone. I've been aware for some time that I've stopped calling her "Mum". I've called my mom "Mum" most of my life, even before achieving high levels of exposure to UK media. I didn't call her that exclusively (I tended to use "mom" and "mum" interchangeably), but frequently enough to make it our preferred variant for cards and such. Without making a conscious choice about it, I seem to have stopped feeling that "Mum" still applies to this person.

But Mom's presence in her own body seems to come and go. It's hard to tell how much of her usual lack of responsiveness is owing to a lack of awareness. I have seen her respond better to a third person, her doctor or a staff member, while I got nothing but stares. I sometimes wonder if she just feels more obliged to respond to these near-strangers, while I'm same-old-same-old, so no effort is required. I do believe that she knows who I am, knows me as her daughter, and (usually) knows my name. But who she is as a person, that's often hard to see. I can seldom persuade her to even express a preference with yes/no questions. I can only try to set things up according to what I know her preferences once were and hope that makes her more comfortable. (I know that means I should continue to call her "Mum", but somehow the word never comes out.)

And yet, once in a great while, there will be a fleeting glimpse of her personality, as there was once in January. The night Mom was moved from the hospital to the new nursing home, a succession of staff came in to check her vitals, skin condition, and every other aspect of her physical health that they needed to record as her status at admission. After this long and thorough examination was done, and I was free to sit with her till she seemed rested, Mom mumbled "I'm a wreck". "Yes," I told her, "yes you are. We'll just have to find a way to work with that."

Powerless

One set of tasks I've kept putting off is everything related to finances and legalities. Mom and I had been talking about such things before her stroke, and were in the process of researching and gathering the necessary paperwork so it could all get done before the end of December. But her stroke was December 6. We had nothing ready. As next-of-kin I've been able to authorize medical decisions without any special arrangements. But everything else requires legal documents: general power of attorney, health care power of attorney, advance directives. Documents she is no longer able to understand or sign. We had discussed end-of-life issues long before, so I knew her general wishes in regard to DNRs and the like, and could pass those wishes on to her health care providers. But I was relieved when I finally found a signed living will among her scattered paperwork. It was several years old, but it expressed the same general wishes I had reported.

But now there are a lot of financial matters to arrange. I seem to be left with only one option, seeking guardianship of my mother. I researched this option when it was first suggested. It's a terrible process, involving serving papers to the afflicted person, appearances in court, having people tell the afflicted person they're being declared incompetent. I hoped we could avoid such a drastic, and hostile, ordeal. Mom's improvement in January made me hope that she would eventually be legally capable of giving me power of attorney. Maybe I was fooling myself, even if she had continued to improve. But she didn't. She got worse. And I've reached the end of the things I can do for my mom without power of attorney. So I'll be contacting a lawyer, one recommended by others in similar situations, to start the guardianship process.

I hate this.

What fresh hell

It's been a difficult month, to say the least.

There was so much that needed to be done by the end of March. It was more difficult than I expected to finish clearing out Mom's apartment. After the initial progress I made when my friend came up for the weekend, it became harder to find help schlepping things to storage. Eventually a couple people came through and I got most of what I intended to store where it belongs. The remaining things either got added to the donate list or are now cluttering up my apartment. Fortunately the organization I chose to donate most of Mom's stuff to accepted everything I offered, so I was left with only a couple too-worn-out-to-donate items. I had to pay junk haulers to take those away the following day. It was a bit hard to see most of Mom's worldly goods hauled away, especially since she wasn't able to have any say in it. But it was a big relief to get that very significant to-do item done.

Choosing a permanent nursing home was a far more worrisome task. I ended up selecting one of the homes affiliated with the subacute facility Mom was in. I felt good about my choice when I visited the home and met with the administrator. Even though I knew I was getting a lot of sales pitch in our conversation, I thought I asked good questions and got satisfactory answers. The assurance that staying within the network of facilities would help with continuity of care was a factor in my decision as well. So even though I expected the move to be stressful for both Mom and me, I believed it would all work out well.

It really, really didn't.

Things started to fall apart from the moment Mom moved into the nursing home. There was no continuity of care. They weren't ready to set up Mom's feeding tube. They didn't even have the right formula in stock. One person after another came in to introduce themselves; and I told every one of them that the feeding tube situation needed to be resolved right away. I told them that Mom had already had problems with mild dehydration, so even though giving her nutrition could wait awhile, giving her water could not. I stood at the nurse's station until I saw the nurse fax the order for the formula and got them to come give Mom water through the tube. I must have stood at that desk at least five minutes straight without being acknowledged in any way. There were other, less urgent problems that kept cropping up as well. I was in tears by the time I left that day. And I was afraid I was going to have to somehow micromanage Mom's care, without being able to be there all day, every day.

Over the course of the next two weeks, I visited frequently, and saw Mom becoming more lethargic every day. Her doctor and I called each other several times, comparing observations and becoming increasingly concerned. He adjusted all the medications that could make Mom drowsy, and ordered blood work to find out what was going on. On Thursday last week I had a care plan meeting with all the people in charge of Mom's treatment at the nursing home. They assured me that they were on top of Mom's hydration needs and following all the doctor's instructions. Late that night I got a call from the home, telling me that Mom was being sent to the hospital because her bloodwork was still showing problems with electrolytes and sodium levels.

I went to the hospital the following morning, after a long night of progress reports from the ER and various admissions staff. Mom was on IV fluids and antibiotics for a UTI. She looked haggard and never really woke fully that day. When her doctor stopped by, he told me he had left me a phone message at work, telling me he'd just talked to the nurse at the home and thought he might want to admit her to the hospital. It turns out he made this call about an hour before I had that care plan meeting. They said nothing about it to me. At all.

Over the course of the weekend, Mom gradually improved. She went into the ER with acute renal failure, but by Tuesday her kidney function was back to an acceptable level. Mom's doctor and I talked a lot. We have no evidence that his orders hadn't been followed at the nursing home; but all his colleagues agreed that dehydration like that doesn't come out of nowhere. So we decided that Mom would not be going back to that nursing home. I didn't do much research this time. There wasn't really time to do so, and research hadn't helped much before. I chose a home that Mom's doctor frequently visits and approves of, that is easy for me to get to so I can continue to keep a close watch. Mom's first couple of days there have gone well. But I can only hope that, this time, I've chosen wisely.

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.

In case of emergency

I used to feel a bit of a twinge of discomfort when I listed an emergency contact on a form. It felt as if I couldn't really be a grownup if I still listed my mother. On Monday it hit me. I don't have an emergency contact anymore. It's something I've thought about as a likely occurrence sometime in my future. Say in another twenty years or so. But not now. I can figure out some practical solution easily enough. But the thought sure was sobering.

Empty

I had a different post in mind to write next. But tonight's visit put that post out of my mind. I'd been told that Mom had been able to sit up in a wheelchair for short periods of time, but I'd never seen it. Until tonight.

It was horrible.

She was sitting at the end of the hall, near the elevator. I've often seen patients in that spot. It gives them a change of scenery when they aren't up to going much further. It's close to the nurse's station, so the patient can see a lot of different people coming and going, but still be near help if needed.

I can't bring myself to write down any sort of description that comes to mind. They're all too... I don't know... is "dehumanizing" too strong a word? Maybe. Enough to say, I didn't see my mom there. More than ever, tonight I feel like my mom is gone. There's just this suffering shell of a person left.

Pressure

My first job was at a fast food restaurant, where I spent most of my time serving and cleaning in the dining area. So I was constantly on my feet for several hours most evenings. I didn't have shoes that were acceptable to the management, so I had to buy a new pair. New shoes and constantly on your feet are not a good combination, especially with the sort of shoes I could afford. I quickly learned not to sit down during breaks, no matter how tired I was. Taking the pressure off my raw heels just made it worse to stand up again.

It's been somewhat the same with visiting my mom lately. Shortly after my last post, I went away for a conference. I wasn't sure until a week or so before that whether I would even attend. I'd already warned my committee chair, the guest speaker I had been making arrangements with, and my hotel roommate that I might not come. But eventually I decided to go. Mom seemed as well settled into the subacute facility as I could expect, and she seemed to understand me when I told her I would be away for four days. Even though conferences aren't restful, I looked forward to having a bit of a break from Mom and the whole situation. And it was nice to have that break. To take the pressure off for a short while.

I had planned on visiting Mom the evening after I got back home. I got back in plenty of time to do so, but I found I just wasn't able to face putting the pressure back on. I visited her the next evening instead, after work. It wasn't a fun visit. Mom didn't seem to have improved at all in the five days I'd been away. And she did a lot of screaming. I felt like the endurance I had built up over the weeks was gone. I was depressed and tired and just not able to deal with Mom. I ended up staying away for another four days.

This Monday I visited, and again on Wednesday. I'll go again tonight. Mom's been more asleep than awake while I've been with her this week. So I've yet to really test my endurance, my ability to take the pressure again. I hope tonight's visit goes well. But I hope even more that I can find that endurance again.

Laughter lost, laughter regained

That first day, the day spent in the emergency room, we still didn't know for certain what was happening to my mom. Initial tests weren't showing a stroke. Her blood pressure was so out of control, systolic readings climbing over 220 most of the time, diastolic readings often over 100. Her blood pressure had been so high for so long that the medical staff had to be careful, bringing the pressure down, but not too much or too quickly. Different medicines were tried, trying to find that delicate balance. But Mom was, as the ER doctor told us, a yo-yo. We laughed through our nervousness at that news. Mom frequently quoted the high readings she had had at her last doctor's visit, a week earlier. So frequently, I teased her for being proud of those numbers. We continued laughing, teasing, seeing each other through the stress.

But over the next several hours, Mom got more distracted, more absent. She didn't laugh anymore. Facetious comments didn't make sense to her anymore. She was less and less herself with each passing hour. The staff kept testing her for symptoms of stroke, but nothing major appeared while we were in the ER. They thought she might be having transient ischemic attacks, TIAs, and I clung to that first word, transient.

Eventually she was moved to intensive care, while they continued to work on stabilizing her. The next few hours saw Mom getting further and further from herself. She could still speak words clearly, but picked the wrong words more frequently, coming up with improbable phrases like "good kitchen" when asking for who knows what. "Shit," she eventually said at one point, after struggling to say something else. "Well at least you still know that word," I laughed. It was, after all her favorite swear word. But she didn't remember why that was funny. And it was the last time I laughed while with her. I kept thinking about that moment while I finally made my way home. We've always teased each other, always found something to laugh about in difficult situations. But that was gone. And I didn't know for how long.

The past couple of weeks have been especially difficult. Mom has been improving just a little bit each day in pronouncing recognizable words, but she can seldom say enough to get her point across. And she's been getting increasingly upset about it, to the point of screaming whenever I can't figure out what she's trying to say. When she wasn't aggressively expressing her anger and frustration, she has appeared blank and unresponsive. Sometimes I felt I could still see my mom in there somewhere, but many times she seemed utterly gone.

But tonight was better. She could say a lot more words clearly, and was a bit more patient when I couldn't guess what she meant when she wasn't clear. There was still some screaming, but not as much. And for the first time since this all began, she even showed some of her own personality and humor again. At one point, after several failed attempts to say something, she waved her right hand and said, "Forget about it." The gesture, expression, and tone of voice were so characteristically her that I laughed and said as much. "Well, forget about it anyway," she said back. That's my Mom.

Manual earth restructuring implement

The problem with the Golden Rule, I've long thought, is that not everyone wants to be treated the way I want to be treated. It's hard enough to put yourself in another person's shoes when they're traveling a path you've never walked. It's even harder to figure out what they might consider helpful.

For my part, it's okay not to know what to say to me. I've been on that path, the one where people around me are suffering in ways unknown to me, and I have no idea what to say. Just saying, "I'm sorry you and your mom are going through this," is enough. With most people, that's about as much as I want. With most people, I'm ready to move on to ordinary topics, ordinary tasks. You're not being insensitive if you ignore the elephant in the room after its presence has been acknowledged.

The hardest part about going back to work after Mom's stroke was answering the same questions over and over. I was so grateful when one colleague simply said, "I'm sorry," and left it at that for a couple of days. After giving me that bit of breathing space, she told me she didn't know what I preferred, but she figured I might not want to hear, "How's your mom?" every day. She was right. And I appreciated that she said she didn't really know how I wanted to be treated.

But I've also appreciated hearing just the right words from people who have walked this path, or one very like. They were hard words, words other people might think I wouldn't want to hear. One person wrote a note wishing me and my mom a way out of this misery. Misery. Such a strong word, but exactly the right word. Reading it, I felt a little less alone, for the first time in many days.

Today someone told me not to feel guilty if I find myself resenting being on this path. Resentment. I've been reading a lot of books on stroke, and on caregiving. I kept looking out for that word, resentment, in the latter. No one seemed willing to say it, to acknowledge it. Many other feelings that family members might feel were addressed, but not that one. Was I the only person selfish enough to think, "Dammit Mom! How could you do this to me?" even as I watched her suffering? Hearing another person say that one hard word also made me feel a little less alone.

We look forward, we look back

It's a lot to process, when something like this happens to you, to your loved ones. You play the same events over and over in your head, trying to make some sense of them. If you're me, you play them in your head even as they're happening, trying to second guess yourself before you've even had a chance to make a decision. Starting this journal feels like it might be a good way to process it all, and maybe even let it go. It's done. I've thought about it. I've written it down. Now move on. Because there's more to come.

I expect what I write for the next few days will jump back and forth in time. Remembering what's happened this past month. Reflecting on what happened this day. Or I might change my mind and abandon this journal altogether. Who knows. I sure don't.

It begins

One month ago today everything changed.

One month ago today my mom had a stroke.

We didn't know that's what was happening. Not that day. She'd been having dizzy spells and losing her balance. She and her doctor were starting to look into that. But Monday afternoon she fell. And again on Tuesday morning. I stayed with her that day, calling her doctor, describing her symptoms, trying to decide what to do. Mom had an appointment with a specialist to see about the dizziness the next day. It seemed okay to wait for that. By the middle of the afternoon it was clearly not okay.

It started with her sitting on the edge of her chair, looking absent and a bit confused. "What's wrong?" I asked. "I don't know," she said. She decided she needed to go to the bathroom, but needed my help to get there. A few steps away from the chair, she started to lean against me heavily. I was on her left, and she didn't seem to understand when I said I couldn't hold her up much longer. I don't think she even knew how far to the left she was leaning. I slowly lowered her to the floor and helped her scoot back to lean against her chair. I called for an ambulance and waited.

While we waited, Mom started to mix up words. That's when I started to get scared.

That's when I knew that everything had changed.