Day One & Two
This is just a long journal entry about the first 2 days of Mom being home with us again. Day One was about as frustrating as it could get without adding a heart attack or some other medical emergency, but today made up for it.
Day One
I was going to write about it last night but by the time I sat down to do it, I didn't even want to think about it anymore. Even talking to Ken about it last night just left us both feeling weary.
Bringing Mom home was okay. It's tiring to go over all the meds, to make sure we have everything, appointments made, follow ups arranged, current conditions noted and so on and she didn't say a single word on the drive home. Not a single word for about 40 minutes. And the minute I lifted her from the car she collapsed against me. I laid her head on my chest and she leaned her body into me. At first I thought she was trying to be funny because she did laugh when Ken made a joke about it. It took me awhile to realize she was that weak and getting her upstairs was going to be a major operation. After walking about 15 feet I had to lower her down to rest on some stairs and Ken and I exchanged the first of of a series of "what the hell are we doing" looks that increased as the day wore on. While on the steps, I kept asking her questions while holding her and brushing her hair off her face; questions to figure out what was going on.
"Is it your heart mom?"
"Do you feel like your blood pressure is too low?"
"Are you just tired from the drive?"
"Do you think you can make it?"
She didn't answer any of the questions. Finally I stumbled on to the right question and asked her if she was too hot in her coat and she nodded and leaned into me, again. I got her out of her coat and in a few minutes she felt a lot better. Enough to make it into the house.
But that set the tone for the rest of the day. She laid on the bed, didn't want to eat, didn't want to take her pills, didn't want to drink the water she has to drink to keep from getting dehydrated. She wanted no part of it. The entire day was a frustrating battle to stumble upon the something that might ease some of her discomfort.
The worst for me was when I came up to get her washed and ready for bed. She couldn't even wash her hands by herself. On her bad days it's like she doesn't understand how to do it and her coordination is getting worse--but she had crap under her fingernails. We stick her fingers 4 times a day to take her blood and the last thing we need happening is for her to get an infection from the dirt getting in her blood stream. No problem. I got it done. I was just glad to have her home and glad not to have to drive, drive, drive every day to see her . But then, I brought in pajamas and she didn't want to get into them. Adamantly so.
"What do you plan on doing? Sleeping in your clothes?" I asked her. She just stared at me for awhile before she nodded. "Mom, you're not going to be comfortable sleeping in your clothes." She stared at me some more.
"I don't want to get into pajamas," she said, "I can't do it." I told her I would do it for her, still she didn't want to do it.
After a day of this I was so frustrated. I said, "Mom--what are we doing here? Are we going to try or what?" And I sighed and sat in the chair.
She said, "What do you mean?" but I couldn't even explain what I meant. I didn't know what I meant. I just felt so lost and I was thinking, Okay. Fine. She wins. I can't fight her on this today.
So, I said, "Mom, you've got to tell us what you're feeling. We're not inside your body. All day you made us stumble on what's wrong before you'd tell us but it's really hard on us. You've got to try to explain to us what you need."
"I'm really hot," she said.
Turns out she really was hot. She'd been home for hours, overheated, and finally near bedtime she tells me. I convinced her to let me get her out of her sweat pants and socks and into a pair of shorts. She started feeling better right away.
But it didn't really stop. When she was cold, she wouldn't grab the blanket at the end of the bed and pull it up. She'd wait until I came to check on her and then tell me she was cold and then thank me when I covered her up. I couldn't get her to drink the water but I did get her to suck on a little ice-cube.
By the end of the day, we were exhausted. She's very childlike now. You can't get mad at her but you can't help but feel impotent and frustrated. We also have to sit with her now while she takes her pills or she won't take them. I'm determined to think that she just forgets the pills without prodding rather than to think that mom is manipulating the situation to keep us at her side constantly. I don't think she'd do that, actually. In fact, I'm sure she wouldn't.
So, I'm sitting there, watching TV but conscious that her eyes are on me, not the TV, and she says, "I would just like to keep you with me all the time." Yesterday, even as frustrating as it was, that felt good to hear. A month down the road, a month of days like this, it would have felt like a vise. I mumbled something lame about trying to be with her as much as possible but I have to work and sleep or we'd all be in the street.
I was going to write about this all last night but by the time the day was done, I couldn't have signed my name.
Day Two
Today was about as far from yesterday as I could have imagined. First, after telling us yesterday that she hardly slept at night while at Kelsey Creek, Mom slept wonderfully. She didn't even get up in the middle of the night to pee.
I had it in mind to let her sleep-in until 0800 if she was asleep when I checked on her, and she was. I went back at 0900 to wake her up. She rolled over and grabbed my hand softly, with a big beautiful alert smile on her face and she stretched like people do on relaxing weekend mornings. She just laid there with her hand in mine but made no move to really get up. After awhile I asked if she still wanted to sleep a bit, and she did. At 1000, I had to wake her up again, needing to get on with her pills and insulin and the start of the day.
She ate a good breakfast. She was talkative. She said she slept "so good." I sat with her the rest of the morning chatting about Shelly and Ken and little things but was also able to get a few things done in the house. She drank 2 and 1/2 glasses of water and was actually thirsty and hungry. She took her pills with no trouble. And then she took a little nap and so did I.
When I got up, Ken was off getting his haircut and Shelly was in with her grandma working on her graduation stuff while they chatted about things. I went up stairs to join them and Mom said, "I really need a CD player." It sounds so simple but it was a huge deal. She hasn't been interested in baseball or TV or anything since a few weeks before she went to the hospital. Now suddenly she wants a CD player so she can listen to Shelly's band and the other CD's we have from when Shelly was off singing in the All-State choirs these past few years. So, Shelly volunteered to go shopping with her dad while they're out this afternoon and get her grandma a CD player.
Because Shelly was up visiting with Mom, I had time to make macaroni salad (the thing I make that Mom loves the most), so she can have that for dinner. Everything is so right about today that even the salad tastes better than usual. Shelly's off shopping and Mom is taking a nap. It's amazing how different the day is when she's alert. God, it's a different world completely. She's here today. Really here.
And Shelly and I had a great time today talking about music and about writing lyrics (she wants me to write lyrics for them and they'll write the music) and graduation and choosing photos of her for some upcoming graduation and CC projects. The guys at Starbucks gave Ken an extra shot of espresso in his drink (4!) so he's buzzing and gorgeous as all get out.
Today is a happy day.
I go back to work tonight and I can go knowing all is right in my world.
Just one more thing to do for Shelly before I can get some sleep.
Yeah, today was decent.
.
.
Day One
I was going to write about it last night but by the time I sat down to do it, I didn't even want to think about it anymore. Even talking to Ken about it last night just left us both feeling weary.
Bringing Mom home was okay. It's tiring to go over all the meds, to make sure we have everything, appointments made, follow ups arranged, current conditions noted and so on and she didn't say a single word on the drive home. Not a single word for about 40 minutes. And the minute I lifted her from the car she collapsed against me. I laid her head on my chest and she leaned her body into me. At first I thought she was trying to be funny because she did laugh when Ken made a joke about it. It took me awhile to realize she was that weak and getting her upstairs was going to be a major operation. After walking about 15 feet I had to lower her down to rest on some stairs and Ken and I exchanged the first of of a series of "what the hell are we doing" looks that increased as the day wore on. While on the steps, I kept asking her questions while holding her and brushing her hair off her face; questions to figure out what was going on.
"Is it your heart mom?"
"Do you feel like your blood pressure is too low?"
"Are you just tired from the drive?"
"Do you think you can make it?"
She didn't answer any of the questions. Finally I stumbled on to the right question and asked her if she was too hot in her coat and she nodded and leaned into me, again. I got her out of her coat and in a few minutes she felt a lot better. Enough to make it into the house.
But that set the tone for the rest of the day. She laid on the bed, didn't want to eat, didn't want to take her pills, didn't want to drink the water she has to drink to keep from getting dehydrated. She wanted no part of it. The entire day was a frustrating battle to stumble upon the something that might ease some of her discomfort.
The worst for me was when I came up to get her washed and ready for bed. She couldn't even wash her hands by herself. On her bad days it's like she doesn't understand how to do it and her coordination is getting worse--but she had crap under her fingernails. We stick her fingers 4 times a day to take her blood and the last thing we need happening is for her to get an infection from the dirt getting in her blood stream. No problem. I got it done. I was just glad to have her home and glad not to have to drive, drive, drive every day to see her . But then, I brought in pajamas and she didn't want to get into them. Adamantly so.
"What do you plan on doing? Sleeping in your clothes?" I asked her. She just stared at me for awhile before she nodded. "Mom, you're not going to be comfortable sleeping in your clothes." She stared at me some more.
"I don't want to get into pajamas," she said, "I can't do it." I told her I would do it for her, still she didn't want to do it.
After a day of this I was so frustrated. I said, "Mom--what are we doing here? Are we going to try or what?" And I sighed and sat in the chair.
She said, "What do you mean?" but I couldn't even explain what I meant. I didn't know what I meant. I just felt so lost and I was thinking, Okay. Fine. She wins. I can't fight her on this today.
So, I said, "Mom, you've got to tell us what you're feeling. We're not inside your body. All day you made us stumble on what's wrong before you'd tell us but it's really hard on us. You've got to try to explain to us what you need."
"I'm really hot," she said.
Turns out she really was hot. She'd been home for hours, overheated, and finally near bedtime she tells me. I convinced her to let me get her out of her sweat pants and socks and into a pair of shorts. She started feeling better right away.
But it didn't really stop. When she was cold, she wouldn't grab the blanket at the end of the bed and pull it up. She'd wait until I came to check on her and then tell me she was cold and then thank me when I covered her up. I couldn't get her to drink the water but I did get her to suck on a little ice-cube.
By the end of the day, we were exhausted. She's very childlike now. You can't get mad at her but you can't help but feel impotent and frustrated. We also have to sit with her now while she takes her pills or she won't take them. I'm determined to think that she just forgets the pills without prodding rather than to think that mom is manipulating the situation to keep us at her side constantly. I don't think she'd do that, actually. In fact, I'm sure she wouldn't.
So, I'm sitting there, watching TV but conscious that her eyes are on me, not the TV, and she says, "I would just like to keep you with me all the time." Yesterday, even as frustrating as it was, that felt good to hear. A month down the road, a month of days like this, it would have felt like a vise. I mumbled something lame about trying to be with her as much as possible but I have to work and sleep or we'd all be in the street.
I was going to write about this all last night but by the time the day was done, I couldn't have signed my name.
Day Two
Today was about as far from yesterday as I could have imagined. First, after telling us yesterday that she hardly slept at night while at Kelsey Creek, Mom slept wonderfully. She didn't even get up in the middle of the night to pee.
I had it in mind to let her sleep-in until 0800 if she was asleep when I checked on her, and she was. I went back at 0900 to wake her up. She rolled over and grabbed my hand softly, with a big beautiful alert smile on her face and she stretched like people do on relaxing weekend mornings. She just laid there with her hand in mine but made no move to really get up. After awhile I asked if she still wanted to sleep a bit, and she did. At 1000, I had to wake her up again, needing to get on with her pills and insulin and the start of the day.
She ate a good breakfast. She was talkative. She said she slept "so good." I sat with her the rest of the morning chatting about Shelly and Ken and little things but was also able to get a few things done in the house. She drank 2 and 1/2 glasses of water and was actually thirsty and hungry. She took her pills with no trouble. And then she took a little nap and so did I.
When I got up, Ken was off getting his haircut and Shelly was in with her grandma working on her graduation stuff while they chatted about things. I went up stairs to join them and Mom said, "I really need a CD player." It sounds so simple but it was a huge deal. She hasn't been interested in baseball or TV or anything since a few weeks before she went to the hospital. Now suddenly she wants a CD player so she can listen to Shelly's band and the other CD's we have from when Shelly was off singing in the All-State choirs these past few years. So, Shelly volunteered to go shopping with her dad while they're out this afternoon and get her grandma a CD player.
Because Shelly was up visiting with Mom, I had time to make macaroni salad (the thing I make that Mom loves the most), so she can have that for dinner. Everything is so right about today that even the salad tastes better than usual. Shelly's off shopping and Mom is taking a nap. It's amazing how different the day is when she's alert. God, it's a different world completely. She's here today. Really here.
And Shelly and I had a great time today talking about music and about writing lyrics (she wants me to write lyrics for them and they'll write the music) and graduation and choosing photos of her for some upcoming graduation and CC projects. The guys at Starbucks gave Ken an extra shot of espresso in his drink (4!) so he's buzzing and gorgeous as all get out.
Today is a happy day.
I go back to work tonight and I can go knowing all is right in my world.
Just one more thing to do for Shelly before I can get some sleep.
Yeah, today was decent.
.
.