Such a cold and blistery day here... Mom still wants to walk every day but we're needing more and more layers, which she isn't used to. South Carolina this is NOT. We walked today and I love giving her that outdoor time, I just don't know when to be concerned that it's not good for her. With her arms so contracted, it's very difficult to get anything on her upper body like a coat or long sleeves. Today she had on her usual t-shirt, a sweat jacket over it, then we wrapped her in a big crocheted poncho, warm mittens and a hat, sweat pants and a blanket wrapped around her lower body. I try to ask her a bunch of times while we're walking if she's warm enough but she kind of becomes truly "speechless" while we're out. Molly is home sick again today (3rd day this week) and by the middle of the day we decided to go out for a bite to eat with one of my girlfriends. Mom became very upset and was crying very hard that I couldn't take her with me. My girlfriend, Judy, was my matron of honor when I got married... and Mom and Judy and I spent a day together before my wedding, running errands... I remember we had a nice girls' afternoon, Mom really liked Judy. I don't know if that was on her mind today, but it broke my heart to have to tell her she had to get left behind. It was almost enough to make me stay home, but I know I have to get myself out sometimes for my own sanity. I don't know if she was remembering that afternoon, but she just didn't understand why I couldn't just quick throw her in the car with us. I tried to explain that it just wasn't that easy to be spontaneous like that, and that she wouldn't be comfortable sitting in her wheelchair... but nothing I said mattered. She just wanted to go out with the girls. What a true tragedy.
It was enough, however, to make me call the hospice nurse and ask her to get us a high-back, reclining wheelchair (what we have now is just a "transport" wheelchair, intended for quick trips from car to doctor's office, etc) so we can take longer trips out and she can even be up in it in different rooms of the house if she wants. The tragedy is that in her mind, she doesn't think of herself as a sick person. She doesn't seem to always understand what the limitation is. How can she be that sick when your mind is rearing to go? Judy said she'd be happy to help after we get the wheelchair, she can come over and help me with Mom, maybe just go to the mall for a cruise around. I find malls a particularly fun place to be, especially right before the holidays! (NOT!!) Judy's a nurse too and took care of her own mother for many months at the end of her life.
The healing touch duo of Peggy and Debbie came yesterday and did about a half hour of healing touch work on Mom... they said, fortunately, none of her energy centers were particular congested... THAT'S a big relief! It must have been very restful to Mom, she was able to fall asleep and become very relaxed. They're going to come back next Tuesday. Massage therapist is coming back tomorrow... so regularly on Tuesdays and Thursdays we'll have some good relaxation.
The nurse came today who regularly supervises Mercy and we had some talk about some of the difficulties in adjusting to sharing your home with someone who has such different cultural practices. I don't have any trouble with most of it... but yesterday, I walked down into the basement where Mercy has her bedroom... and she had a bunch of her special fruits and vegetables kind of spread out on the carpet, all in a neat row... um, ripening? I became a little concerned about the amount of food and food stuff in the basement, not wanting to attract any critters. I think we also decided with the nurse that we may need to call back in some help from one of the home health aides available to us through the hospice agency. Mercy and I have it down pretty well, but the times that Mercy needs to go downstairs and rest, don't always work out for me trying to balance family time... like her dinner break tends to be right around 6pm. Well, that's an absolute witching hour in this house. Kids are in the middle of homework, after-school activities and dinnertime. I find it impossible to be fully available to everybody for everything they need at that hour. But I know, especially because Mercy is not getting solid sleep overnight, that she needs to be able to take her breaks. The nurse recommended setting a schedule so we both know when the other is most available. I always hesitate saying anything because I don't want Mercy to take anything as a complaint of her performance and then have her not feel like taking such good care of Mom. It's a very fine balance, I guess. But anyway, maybe if the other aide can come in from 1-5pm 3x per week, then at least on those days, I can focus on getting my kids situated while Mercy is having dinner and showering. We'll see. It's all just such a learning experience.
But overall, I think Mom is feeling OK. Her arms are definitely looser with all the stretching she's getting. She's loving the walks and isn't talking so much this week about her homesickness. We're going through lots of movies borrowed from the library... just wishing it were May instead of November. Talk soon.
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