Several months ago, my mother had a stroke. I've mentioned it in passing in various entries, but I've never really done a summary of what happened and what's still happening, so here it is.
Mom lives alone (with two cats it's not really "alone", but there are no other humans in the house). John and I have breakfast with her every other weekend. On one of the weekends we don't see her, she stopped returning calls sometime on Saturday. Fortunately for her, one of her friends wanted to borrow a catalog, and called her on Saturday. And again on Sunday to ask why Mom hadn't called her back. The message on Monday sounded worried and she told Mom that if she didn't get a call back she was going to send the troops out looking for her. Tuesday, she sent her daughter over to find out if everything was alright (her daughter lives within 10 minutes of Mom). The daughter and a neighbor scouted around and found an open patio door, which they used to enter the house. Mom was passed out on her living room floor. 911 was called. As luck would have it, a friend of ours lives 3 doors down from Mom, and he called John's cell phone and said "Do you know that there's an ambulance at your mother-in-law's house?" We called Mom's phone and told the answering machine "This is Amanda, Holly's daughter" to which there was an immediate pickup and an "Oh, thank God" and then I was passed over to the paramedic who wanted to know if we had a preference on where to take her. I vaguely recalled Mom picking North Oakland Medical center for a previous trip because that's where her doctor worked out of, so I told them to take her there. John and I high-tailed it over to the hospital as well.
Mom's blood sugar level in the Emergency Room was 824. If you're lucky enough to never have had cause to research diabetes: normal range is 60 to 100. After you eat, it can go as high as 140 and still be considered normal. 824 is not just high, it's "oh my God" high. It's "all your fluids get gooey and your drool looks like the snot of someone with a really bad cold" high (which is caused by a condition called ketoacidosis, which is a direct result of high blood sugar). By the time we got there she was responding a little: her eyes were open but glazed, and she would turn towards you and try to look at you if you touched her left side-- but not if you touched her right side. She didn't like the oxygen mask they put on her and tried weakly to pull it off, but she didn't really have the strength. And she did need it, because her breathing was labored and heavy (almost certainly a direct result of the ketoacidosis-- it's not just your drool that thickens, it's all of your bodily fluids)
As an aside, if you want a short summary of why I despise the Atkins diet as much as I do, it's because the Atkins diet makes it incredibly easy to inadvertently put yourself into ketoacidosis.
A chest X-ray confirmed that she'd had a heart attack, but the consensus among the doctors was that the heart attack was the result of the ketoacidosis, and a much larger concern was the single-sided paralysis, which is a classic sign of a stroke. However, the ER CAT scan did not show signs of a stroke. (This is not unheard of; if the stroke doesn't involve massive bleeding it doesn't show up right away.) They got her mostly stabilized, and moved her into the ICU. That was Tuesday night/early Wednesday morning.
Wednesday when I visited, she opened her eyes a little but said absolutely nothing. I met Dr. Gary Ruelle, who is the partner of her regular doctor. He'd never seen Mom before, but her regular doctor was ill and couldn't go to the hospital, so Dr. Ruelle became her new doctor. I liked him immediately, because he answered my questions without patronizing me and he didn't try to give a non-answer if there was no good answer.
Thursday she talked to me for the first time. All she said was "okay" and she said it no matter what I asked her ("How are you doing?" "Okay." "Do you remember who I am?" "Okay." "Do you want me to punch you in the face?" "Okay."). Still, she was alert and talking, so I'd take it over the alternatives.
The days in the middle blurred together. Somewhere in there, one of the ICU nurses helped me wash Mom's hair (a messy process, as she couldn't lift her head, so we had to put towels under her head and all around it, and just accept that absolutely everything was going to get wet.) She did start to talk more, but it was sporadic and she lost more words than she found. She couldn't remember my name, which was frustrating (but also common of stroke victims-- the longer you've known something, the harder it is to retrieve). She got John's name within a few days, and one day a friend accompanied me to visit her-- as soon as he walked into her room, she chirped "Hi, Jeff". She hadn't seen him in nearly a year, and could come up with his name straight away, but she still couldn't get mine. Grrrrr.
Whenever someone walked into Mom's room, there was a delay before she communicated with them, even if they were speaking directly to her. It took her time to process who this person was and what to do with them, even when it was me. This led to a disconnect between the doctors and the rest of the world, because most of the doctors would breeze into the room, ask "How are you? Do you know where you are? What's your name?" and then upon not getting immediate answers they'd write down that she was unresponsive and breeze back out of the room in under two minutes. I had doctors telling me that she was barely alert when she'd chatter on to me (granted, it was still a lot of babble as she couldn't find the right words) and feed herself. Dr. Ruelle endeared himself to me again here, because he'd walk in, greet her and remind her who he was, and then he'd stand in her room and do some paperwork while she got used to him being there. THEN he'd ask her how she was doing and start examining her. If you live anywhere near Waterford and are looking for a doctor, I highly recommend him, and he can be found at All-American Physicians on Highland Rd.
An important note is that we'd been planning a live game for roughly 6 years, and had rescheduled it 5 or 6 times already. When Tif and Peter bought non-refundable plane tickets, I announced that our May 4 - 6 dates were set in stone, and that we were having this game "come hell or high water". Mom's stroke was April 25th, which was far too late to reschedule the game. I could have canceled it and I'm sure everyone would have understood, but ultimately I decided to go through it for a variety of reasons, not the least of which was that there were four of us planning it and all the other three were quite capable of pulling it off without me. (Another reason was simply that if Mom recovered quickly, I would never have forgiven her for making me miss the live game.) It required me to do a little more planning, but I could visit Mom in the morning and be back for the game. I had also figured on sneaking out during a quieter period Saturday night to see her.
Just a day or two before Tif and Peter flew in, Mom was moved out of ICU and into a normal hospital room. I breathed a sigh of relief. It was obvious that she was going to have a long recovery from the after-effects of the stroke, but her basic physical condition was improving and they no longer felt she needed the constant monitoring of the ICU. Yay!
Friday morning, I visited Mom. While I was there, I rubbed her feet, because I knew she'd like it and I felt guilty about not seeing her as much over the weekend. They felt cold, but I didn't think too much about it. She was doing quite a bit better; she remembered more and she stayed on the same topic for longer before jumping to another thought. I thought things were going well, all things considered. Until Friday night, when she had a second heart attack. We got the call that they were moving her back to ICU shortly after the live game started, and I had several minutes of "gotta go right now" panic until sense kicked in and I realized that if I were to race to the hospital right then, all I could really do would be to get in the way of the people who could actually help her. I forced myself to breathe and calm down a little bit, and I stayed to wrap up the bits of game chaos for as long as I could stand it. My limit was around 9:30 (I think we got the phone call around 8:30), at which point I grabbed my keys and headed to not-quite-downtown Pontiac. In the dark in a questionable area (the hospital itself is relatively safe, but I wouldn't step too far away from it), I searched for an entrance that wasn't locked and found the employee entrance. I blurted out that my mother was moved from a regular room to ICU and I had to see her at some hapless security guard, who took pity on me and buzzed me in. Mom was pretty much out of it-- she opened her eyes when I touched her, but she went back to sleep almost immediately. I watched her vital signs for a bit and talked to the doctor, and went back home feeling like someone had pulled the rug out from under my feet. I collapsed on the couch in the front room next to Peter, and promptly used him as a pillow, cuddling up next to him. Someone sat next to me and did the same, cuddling up with me, but I'm sad to say that I can't remember if it was Tif or Mia. Whoever it wasn't sat across from me, which is why I can't untangle them in my memory. Chris sat down on the floor in front of me and started rubbing my feet.
While I thoroughly enjoyed all of the live game despite the external circumstances (I wouldn't do them if they weren't a ton of fun), that few minutes on the couch is the strongest memory I have of it-- two people cuddling me, another rubbing my feet in an attempt to make me feel better and a whole slew of people looking concerned and asking if I'm alright. Above all else, I felt totally and thoroughly loved, and that moment made me terribly glad I hadn't canceled the game and deprived myself of my friends when I needed them most.
Since the second heart attack wasn't from acidosis, it brought the first heart attack into question as well. A heart catheter was scheduled for Monday the 7th to find out what caused the heart attacks. A disagreement between two cardiologists led to it being rescheduled to Tuesday. On Tuesday, Mom's hemoglobin levels were low, so she was given a unit of blood and the catheter was rescheduled again to Wednesday. Wednesday they did the catheter and found a blockage, but NOMC doesn't do non-emergency heart surgery (they don't have a cardio ward), so she was moved to St. Joseph Mercy Hospital where they did an angioplasty and put in a couple of stents. She stayed at St Joe's for almost a week as physical therapy and long-term plans were hashed out. St Joe's discharge planner was clueful, in that her first question was "We know where she lives, but where do you live so we can look for someplace close to you?". We settled on a nursing home that had a sub-acute ward that was only about two miles from us.
On the day she was moved to the nursing home, John and I met her there to fill out all the paperwork. Since co-ordinating a patient discharge with a wheelchair van arrival and driving time is touch-and-go, we sat in her room for about a half-hour before she got there. During that time, we listened to her roommate talk. She talked to us. She talked to the nurses and aides. She talked to the nurses and aides that weren't there. She talked to her stuffed animal. She talked to her mattress. She talked to the fairies. The nurses confirmed that Mom's roommate talked pretty much all the time. We asked what the procedure was for room changes, and they said they'd make a note of our request but they had no other open beds.
The next day when I visited, Mom was pale and exhausted. She complained about her roommate and said she got no sleep. I requested again that Mom be changed to a different room, but I didn't think much about her exhaustion since a lack of sleep would easily explain it.
The day after that, when I came into Mom's room, she was in bed and white as a sheet. She didn't respond to my voice or my touch at all, which had me frightened. I went up to the nurses' station and asked if they had given her something to make her sleep, and told them they needed to check on her. They told me they were already on the phone getting an ambulance for her, and that they hadn't given her anything. I called John, and we raced to the hospital as well. The ER told us they were going to give her three units of blood (the first one was already going before we were allowed to see her). After they gave her three, her hemoglobin levels were still very low so they ended up giving her two more, admitting her to ICU in the process. The cause turned out to be a bleeding ulcer, which was cauterized. She spent three days in the hospital and then went back to the nursing home. When she went back, she got a new roommate at our insistence-- we told them that if they couldn't give her a different room, we'd just find a different nursing home.
All of the above occurred in just under a single month-- she went into ER the first time on April 25th, and she came back to the nursing home after the bleeding ulcer on May 22nd. During half of that time, we also went to her house every day to feed her two cats. We knew we couldn't bring them to our house until after the live game, because having 40 people wandering around would have just totally freaked them out (our own cats weren't happy about it, and they had the advantage of knowing where all the hiding spots are in the house and being mostly used to each other). We briefly considered bringing them to our house right after the game since they were lonely and driving over to her house every day was killing us, but I was concerned that they'd get attached to Tif and Peter. Since they already felt abandoned by Mom, I didn't want them to bond to someone else and have that person leave too. We brought them to our house the day after Tif and Peter flew home, and had about a week of Cat Drama as our two cats expressed their displeasure at the new housemates and her two cats adjusted to a whole new world.
Since late May, the bouts of sheer panic have given way to the inexorable drag of a continued recovery. Mom is making progress, but it's slow and it's frustrating for both her and us. A urinary tract infection stopped her forward progress for a week, which prompted her insurance company to deny her more days at the nursing home. We're still in the process of appealing their decision, so there's an entire month of nursing home stay that is hanging over us-- if this final, go-through-the-records-in-detail appeal is also denied, we're on the hook for the cost. In the middle of it, we moved her to an assisted living facility, because while she was not well enough to move out of the nursing home when the insurance company first denied her claim, she's made enough progress since then that they definitely would not pay for more time. That's good news, in that she's made progress, but medical insurance doesn't pay for assisted living at all, so somewhere we have to come up with money to pay for it. The current plan is to use money in her 401(k), since it's an asset that would have to be drained if she needs care long enough to end up on Medicaid. That, of course, is a royal pain in the rear, since she's not capable of dealing with it on her own. I do have a financial power of attorney (now... I didn't when all this started, but one of the first things we did when she was well enough to transfer to a car and understand what she was signing was to drag her off to a lawyer's office and get her to sign the POA), but it's still a mass of paperwork just to get a single company to process the power of attorney and allow me access to her accounts. And it's a mental drain on me, because I want to make decisions that help her most while still not going against her basic wishes. One argument is her car-- she can't drive it and probably won't be able to for a year or more, but she wants to keep it because driving is one of her big motivating goals. I want to sell it, so that I don't have to maintain it and I can get rid of her car payment AND her car insurance, which would help a lot with her credit card debt (she was barely making ends meet on her normal paycheck, and her disability only gives her 66% of that).
I'd love to have a good wrap-up on this, but I won't for many months until she recovers or plateaus and stays there. She's still adjusting to the assisted living facility, since she's only been there for a week and hasn't gotten used to their routines. She's got new home-care therapists for everything, after getting used to the ones at the nursing home, so that's another thing for her to adjust to. She's also got a walker now, to augment the wheelchair. She still uses the wheelchair most of the time, but she does use the walker every day for as long as she is able, and that's a good thing.
I do want to say, in closing, that I've run into some terrible doctors, nurses, aides, etc. But I've also run into some fantastic ones-- Dr. Ruelle makes the top of my list, but I also really liked Ann from NOMC's ICU unit (she's the nurse who helped me wash Mom's hair), Jill from St. Joe (who Mom only had for one day, sadly), and Matt from Clarkston Specialty Healthcare (who was Mom's nurse for the three months she was there, and who was consistently kind and compassionate-- the saddest part of moving her to the assisted living facility was that we couldn't take Matt with us).