Elizabeth was confused about the gifts she was receiving through the mail.
“What did I do to deserve them?” She asked me.
I thought for a moment and my practical side said, “Well, you gave many online readers presents from Japan and maybe they wanted to return the sentiment?”
She didn’t believe that anything she sent could be the reason, plus she thought some were from people she didn’t send anything to.
“You show people that you really care about them. They can see they are important to you. You talk to them every day and when you hear they are having down days you write a postcard or send a gift to cheer them up. I think showing you care is one of the greatest gifts you can give someone.”
During the time Elizabeth was with fever and after, we had been ill in our own relationship. Between the week of medical tests and the week of Elizabeth being sick and me trying to catch up at work, I felt out of control. I felt like I didn’t know where to turn, so I just kept ignoring things. Sometimes Elizabeth was part of these things.
Elizabeth confronted me after a few actions that something was wrong and my reaction was “nothing is wrong.” Elizabeth kept asking “Why did you…?”, “Why did you say…?” So MANY “Why?” (sheesh, WHY can’t she let me be!) So I went to the park and wrote a list of my emotions. As I started writing, the list got longer and longer with more and more pages. I began to realize that I was in denial, I was in, “ignore it and everything will be okay” mode.
Yet some of the statements I wrote down were:
“Anger and self pity that I have to make decisions on my own”
“Scared to express my feelings”
“Always feeling torn (demands on my time) between work and Beth”
“Scared I’ll lose my job and benefits”
“Angry that Elizabeth has to be sick”
“Angry that family doesn’t support us”
“Frustration that I have to make up so much work” (If it is a child or a parent I wouldn’t have to make up any time, but any medical appointment I go to for a SPOUSE, I have to work back.)
“Angry that I can’t keep up with the little things, like chores”
“Angry with the medicos”
This is just a small part of what I wrote down and it seems like I DID have emotions, just the ones about caregiving (or the future) were ones I wanted to hide.
I went home and talked to Elizabeth about some of the list. The problem was that Elizabeth felt frustrated and depressed that so much of what was bothering me was about her illness; something she WOULD change for me, if she could.
And then, when we were trying to find her sports outfit for boxing, I kept saying, “I know where that is!” only to run into YET another pile of laundry that Elizabeth had washed but I had never put away: a stack in the bedroom, a stack in the living room, a stack on the kitchen chair, a stack on the dresser, and on and on. I don’t remember if I actually did scream, but it sure made me want to.
When I came home from work yesterday, after finding out I was flying out AGAIN next week for a meeting in Vancouver, our apartment looked very different. I could see our furniture, like ALL of it, not just the outlines.
Elizabeth had spent the day, including working two hours with her home care person who could put things away, to find the clothes, to sort the clothes and to hang up and put away the clothes; only to find MORE stacks of clothes! So she sorted and put away those too as well as doing two loads of laundry. She also cleaned the living room, the area around the couch, organized the clothes drawers and hangers and took out about seven or more bags of garbage. There was even my bed made.
I know it may not seem like much for many people but for me it meant a lot. It told me that:
1) Elizabeth was really listening to what I said (about my feelings)
2) Elizabeth loves me and wanted me to come home to a place where I didn’t feel guilty or upset at work undone.
3) This kind of housework takes Elizabeth a lot of time and effort since she cannot walk and carry things but must make many, many trips in her indoor wheelchair just to sort or put away one stack of clothes, a little bit at a time. This is probably why she is still in pain and exhausted today.
4) I was married to the best person ever.
She said she wanted me to be able to come home and just relax, to read a book or whatever I wanted. I did do a Sudoku, and read the paper.
Another gift she gave was some inspiration. Yikes – the “I” word. With some of the work done other chores I had put off didn’t seem as insurmountable anymore. I sorted through the piles of shoes (almost all mine) in the entrance way last night. Today I returned the Gatorade and water bottles to the recycling depot, donated some old clothes to charity and on the way back picked up pots for the soil and herb seeds I bought a few weeks ago. Haha! We actually have a ‘home’ again instead of various piles with small wheelchair pathways and occasional places for sitting down.
Thank you Elizabeth. You’re the best!
Well, that is enough about me and my ‘caregiver blues’… you’re here to read about Elizabeth.
Combining boxing and housework within 24 hours is a recipe for pain, pain and more pain. When Elizabeth came to bed last night she was hallucinating from it. She thought there were people in the room with knives, including me, waiting to skin her. She had already taken double the pain pills and muscle relaxants she usually does and it didn’t seem to make things easier. Her muscles were also twitching over her body.
She did eventually get to sleep and had to take another set of pills in the morning. She slept off and on for 8.5 hours, being woken by pain. Her energy is low, which means she spends a lot of time with her head held up by the wall. I guess it is to be expected.
She was able to meet with me and a lady from Lifeline who had come today to install a special two-way phone system. Lifeline provided a wrist band with a call button so that if Elizabeth needs help and no one is around she presses it and is automatically connected to a helpline. They will talk to her and if they can’t hear her (she’s unconscious or otherwise unable to speak) they will call me at work. The phone has a speaker and in theory should be able to pick up her voice from any room in the apartment. Because we’ve got too many air conditioners/fans running and her voice is soft it DIDN’T work. We’re going to rearrange the study and put the phone in there as this is where she spends most of her waking hours.
Also I got approval yesterday from the building owner, via Fran our building manager, that I could get an air conditioner. First Fran suggested pinning dark sheets to our curtains to cut down the sun’s heat. When I told her we had already done that, she said how about a portable air conditioner as it would cool the whole apartment. I told her we bought one last year and it isn’t powerful enough to do that. Not only is it not powerful enough, it’s twice as noisy as a window unit and twice as expensive. She said it may be half the price to buy a window unit but then they’d have to replace the window to make it fit. What?? I told her I thought we could keep the existing window and put some plywood in the open space above the machine. She reluctantly agreed – "but make sure it isn’t Styrofoam, because even though you live on the third floor someone might see the Styrofoam as an easy way to break into the building." Okkaaay… if someone had a ladder long enough or was willing to risk scaling our building I think they’d deserve a reward of some sort because when it is hot EVERY window in EVERY apartment is open. Besides, who’s stuff would they steal? Ours, so why should she care? I think Fran would LOVE to inspect our place and point out the MANY things she thinks we “should” be doing, but since she seems little concerned with how things affect Elizabeth’s health, I have no interest in listening.
Guess we’re going air conditioner shopping this week. Fortunately the weather hasn’t been unbearably hot for Elizabeth the last few days.
Elizabeth is up now, but had some sort of neuro short-out during the long nap. So I guess I am in charge of the thinking around here. And my thinking says, “We’re going drinking!”
49 minutes ago