Numb

I can't think of a more appropriate title for this blog post than numb. It's how I'm feeling right now.

Almost three weeks ago, my mom moved to a nursing home. We were notified on Tuesday morning, and she was originally expected to move in on Thursday. I delayed until Saturday morning. I thought it would give her a couple more days in her own home, but in retrospect, moving in on the weekend was a bad idea. None of the regular intake workers are there on the weekend, and it was fly by night and make do until Monday.

It's been a tough transition. The night before mom moved, she suffered a mini-stroke rather than the TIAs we've been dealing with. It robbed her of her ability to communicate. She knew what she wanted to say, but couldn't get the words out to say it. My mom is not a chatty person on a good day, so this added an extra layer of stress to her worst nightmare. For her first couple of days in the new environment she was unable to communicate her needs. The staff then made a bunch of assumptions based on what they thought the knew about mom, and caused them to treat her like an addle-brained 3 year old. Why is it that some care givers talk to seniors like they are 2 years old and not the brightest child in the playground? For example, my mom's roomate is immobile, and we were told, doesn't communicate much. I heard her talking to her husband one evening and she could communicate more than she was letting on. I also noticed that the staff called her by one name and her husband called her a different name.  I had lunch with her and mom one day, and I asked her what name she preferred. Turns out she wants to be called by what her husband calls her, but I don't think anyone bothered to ask her.

As the after-effects of the mini-stroke diminished, mom regained her power of speech. She's waging a bit of a battle of wills with some of the staff and it's vintage Myrna. Because of the inoperable skin cancer lesions, her forehead must be bandaged. It's an open wound on a nerve and dressing changes are not a picnic in the park.  The home care nurses had learned the tricks, but the nurses at the home are still learning. Mom made me stop at a pharmacy on the day she learned we couldn't keep her family doctor, and she bought her own supplies and did it herself. I gave the staff a heads-up but told them to let her keep them. It gives her a tiny measure of control in a world that she's lost control in.

I thought she would be safe from falls, yet she's had 2 since she's been there. One they knew about, one she didn't tell them about. She's now in severe pain, and my mom is not one to complain about pain. She avoids taking pain pills if she can help it, and if she's asking for meds, there's a problem. We had to transfer to the nursing home doctor, and he doesn't know mom from a hole in the wall. I think she's hurt something, and I will keep bugging them until something is done. Get used to this face, people.

I now have to start dismantling the apartment. My mom gave my aunt my favorite pieces, an old easel and needlework picture stitched by my grandmother, and a washstand that always stood in our front hall. I can still picture my dad's hat on the corner. I was hurt and angry when mom gave the pieces away, but in the end, I still have the memories and it's just furniture. I'm starting to make a plan for the rest of the contents, but I'm starting with things that have no emotional attachment, like sheets and towels. I have 2 months to get the job done, and it's an emotional grind every time I go over. For 22 years, mom's apartment has been my safe place, and it's hard to see it go. A wise friend of mine told me to approach as one would approach eating an elephant-one bite at a time.

My daughter has taken the transition well. There's a candy machine and a shuffleboard in the lobby, and a large lawn to practice handstands and somersaults while we sit in the shade under the trees. "There's more to do at Grandma's new home," she said and comes to visit more readily than she did at the apartment. That's made things easier for me.

This has been a nightmare journey. Mom went from being self-sufficient with a bit of help, to a nursing home crisis placement in less than 7 months. I am mentally, physically and emotionally exhausted. I still go to see mom, but I've been able to skip a day here and there without panicking that she's fallen, or not eaten. On the days I don't go we talk 3-4 times on the phone. There are still many things I have to accomplish, many tasks to do, but at least I know mom is safe and isn't lying in the hall somewhere unable to tell me she's hurt. I had to make my mom's worst nightmare happen, and it's taken a toll. It was the right thing to do. It was the necessary thing to do, and signing the papers and leaving my mom there the first time was one of the hardest things I've ever done in my life. We're adjusting, but there are still tough days.

At the end of the day, I need to be able to look mom in the eye, and face myself in the mirror and know I did the best that I could for my mom. I can do that. The vision might be blurry with tears, but I know I'm taking care of my mom the best I can.

Observations from the ER

Since January 14, I've spent 33 hours sitting in ER with my mother. I've learned a few things along the way.

• Our health care system is broken.  Spend even a few minutes in ER and you know Ontario has a big problem. People with possible broken bones, wounds requiring stitches and coughs and colds share space with people who might be having a heart attack, pneumonia or a stroke. When doctors' offices close for the day, patients are instructed to "go to the nearest ER." instead of using a walk-in clinic. Doctors are penalized if their patients use an after-hours or walk in clinic instead of the ER. This is just wrong.

• People don't seem to understand the "emergency" part It's been my observation that the people who complain the loudest are often the ones who probably shouldn't be there in the first place. And once you've already invested 4-5 hours, you might as well just suck it up and wait it out. If you don't want to wait, then maybe you shouldn't have been there in the first place. I sat next to a guy on the 27 hour day with my mother who gave up and went home after 6 hours. 10 minutes later, they called his name. Dude, you should have waited or not come in the first place.

• Hospital parking fees are usurious. The Canadian Medical Association Journal recently called for hospitals to scrap parking fees, because patients may rush appointments because of the cost of the parking. http://www.montrealgazette.com/health/Medical+journal+calls+hospitals+scrap+parking+fees/5778290/story.html 

 When my mother was having daily radiation, I paid $35 a month for a  parking pass that allowed unlimited entry and exit. That was much cheaper than the $10/day average. When my mother was hospitalized at a different hospital this time (often thought to be the more "caring" one for patients in town) I nearly joined my mother in a hospital bed when I found out that the "preferred rate" was $60 a week. A WEEK. It allowed for unlimited in and out. Since I was going twice a day for the first few days, I sucked it up, but $120 for 2 weeks of parking? That's obscene, especially when there is no other option.

• Medical emergencies go in waves  The night my mother and I sat in ER after she hit her head, she was one of 4 with head injuries-2 old women, a very busy 18 month old baby and a hockey player. The night we waited 27 hours, it was "try to cut off your hand" night. I counted four people with bloody digits, including a chef at the Bauer Kitchen who discovered that the slicing blade was quite sharp enough, thank you.

• Medical staff are amazing. Admin staff, not so much. The care that my mother has received has been exemplary. Once we managed to run the gauntlet to see a doctor, we received undivided attention, care and concern. The medical staff are overworked, understaffed and run off their feet, yet they do little things like bring heated blankets. My experiences with the administrative side, however is not positive, with a couple of exceptions. It took me 3 tries to have my parking permit renewed when my mother was having radiation, because it wasn't entered properly in the system. Both the cashier and the security guard treated me like a miscreant trying to rip off the hospital when I was just a caregiver trying to get out of the garage. My bad for being efficient and renewing early. I stepped in and helped an elderly gentleman a couple of days ago who was confounded by the parking ticket machine. He was just trying to pay his ticket and leave, but the machine wasn't taking coins or credit card, he didn't have any paper money...and he didn't speak English. The security guard's attitude was "tough luck, buddy, can't help you." although we were standing within inches of an ER full of humanity. I poked my head in, asked if anyone spoke the language in question, got help for the old man, and then went on my way. Security guard could have done the same thing, but chose not to. May he never be in a similar position in a foreign country.

• Ratios The amount of time you wait is directly proportional to how long since your last meal. Both times I sat for extended periods with my mom, I did so without dinner and lunch had been a long time before that. Tim Horton's would make a fortune with a rolling coffee cart in ER. Both times, I couldn't leave my mother to go get provisions.

• Television  While television may be a distraction, watching the same damn show for 8 hours repeated over and over is just annoying.

• Full moon  Anyone who has worked with the public will tell you this-the lunar cycle has an influence on people. I've sat in the ER on a full moon, and let me tell you, the loonies get sick on a full moon. They may also provide quality entertainment. I know when I worked in Customs we didn't even have to look outside to know when it was a full moon. If the loonies aren't in the ER, they've taken to the airways. And if said loony is brought in by ambulance, is pacing back and forth and muttering, leaving him in a waiting room full of people with a door that opens to the outside might not be the best plan of action. And if said loony then vacates the premises, it shouldn't be a surprise.

• Dating  Note to the young man who brought his buddy with the half-amputated finger into the ER who kept "chatting" with the two young women waiting for medical treatment. The ER is not a good place to try to pick up women. They weren't interestedl; they were trapped. They were not that into you, they just didn't want to move and lose their chairs.

The ER is no place for sick people. Note to self: always charge the e-reader.