This Is Going to Be a Sleep Day
    I find days like this frustrating, although they are happening more frequently. There are times when she wants to take to her bed out of boredom, says so, and I try (and sometimes manage) to tempt her to remain awake. Sometimes, though, like today, she simply will not be moved.
    She is getting a bit better than she has been. A few months ago, when her health was poorer, I would have to physically push her to sit up, go to the bathroom, come out to the living room, etc. Lately, she's been much more active. She's had three days in a row when she's arisen, bathed, dressed, and either gone on appointments or to the store with me or simply stayed up. I tell myself, when a Sleep Day occurs after a day or more of activity, that she must know what she 'needs', but I still find it disconcerting that her appetite for sleep is so prodigious. She's always been a champion sleeper and napper. Her ability to relax into Morpheus' cradle is legendary in our family. Our cats consider her an Honorary Cat because she sleeps so much and can't wait for her to head for her bedroom or settle into a prone position on the couch. I, however, am not thrilled when she needs so much sleep. During her recent period of near constant sleep she began having regular bowel accidents when she was up. It was as though her body was saying, "Look, lady. If you aren't going to get up enough so I can function at your convenience, I'll just function whenever I feel like it." She is uncomfortable when this happens, in part because she has trouble cleaning up so I insist on doing all the cleaning, of her person, her clothes and any areas that are affected. She, however, much to my relief, is not embarrassed that I am finding myself cleaning up after her. I discovered, after her first bowel accident some time ago, that I am completely comfortable with and practical about clean-up and don't have a problem contemplating this activity.
    I have cautioned her, on occasion, that her sleep habits, in conjunction with her low liquid intake (I spend a lot of time pushing liquids on her) have something to do with her ability to control her bowels. When she is feeling relatively good this makes sense to her and she heeds this advice as cautionary. When she isn't feeling good, though, she doesn't really care where or when she shits.
    As well, I worry that allowing her to sleep, when I simply can't get her out of bed, is undermining her determination to remain alive and her health as she continues. Then, the day after a Sleep Day, she perks up and is amenable to being awake, and my anxiety subsides.
    A month or so ago, when we were involved in a days' long major sleep-or-not-to-sleep battle, I told her that if she ever feels as though she wants to go to bed and sleep her way to her death I will allow her to, I will see to it that she is comfortable and I will protect her while she does this. "You'll have to let me know, though, Mom, if and when you want to do this. Otherwise, I'm going to assume that you are still interested in waking up for another day." She understood and agreed with me. Since then, I have twice asked her if she was ready to do this, and both times she has answered, "No, not this time."
    My hope is that, if and when she decides to sleep herself to her grave, she will be able to signal this to me in some way. I think, if she is unable to, I'll be able to tell, but it would be nice to think that, in some way, she will be able to activate our agreement with a sign that I will readily understand.
- posted by gail rae @ 16:14  0 comments   email...this post

 
Not Just Me
    Yesterday I talked to another woman, also a daughter, also in her 50's, just two houses down our street, who lived with her mother and took care of her until she died, a few weeks ago. I'd met her much earlier but we'd had very little contact. She told me there is another woman on the same street, south of us by several houses, who does the same for her father.
    The woman north of me reminds me of the caricature of outspoken, bawdy English fishwives. She's short, as wide as she is tall (her description; I think she is only half as wide as she is tall), extremely energetic and somewhat more ostentatious than I am in presentation. She told me, today, that she decided to dye her hair very artificial red because she noticed that I'd been playing with unusual hair color for somewhat over a year. We talked about how the isolation of caregiving has a tendency in some people, certainly her and I, to push us into becoming more outgoing and "noticeable" than we were before taking on caregiving duties. I can't imagine that she was ever less outgoing than she is now, but I can remember a time when, for all my comfort in social situations, I was not nearly as outspoken and visible as I am now. Having to advocate on behalf of someone else tends to do this, I think.
    Her life changed immeasurably, as did mine, when she decided to take care of her mother on a live-in basis. She received more help from her family than I do from mine, but has the same attitude...those who are able, do, those who can't do what they can (her family includes sisters, brothers and grown children with their own families; she is a widow). She, as do I, feels very lucky that someone in her family was available to live with and take care of her mother. Even so, there were times when her mother needed such intense, specialized care (she was bedridden for the last year or so) that she had to spend short periods of time in a nursing home. These periods were far from a relief for the daughter. She found, as did I last fall when my mother was hospitalized, that professional caregivers tend to be less solicitous than teenage babysitters, so she spent most of her time at the nursing home with her mother.
    She tells me that the woman who takes care of her father continues to work outside the home, although her father is bedridden. She is a tall, dark, cool looking woman. I don't think I've ever seen her in anything but a business suit. She hires a lot of help to see to her father but regrets not being able to stop her career and do much of the caregiving herself. She has had to 'unhire' about as many professionals as she's kept, and my northern neighbor tells me that the southern neighbor never feels fully at work when she goes to the office.
    There are so many of us doing this for our parents or elderly relatives yet, despite this, we remain isolated and invisible. So many different situations and feelings surround caregiving. From talking with my northern neighbor and learning about my southern neighbor's situation, I'm not surprised that many of us are not comfortable with the current climate and advice that exists 'out there' and is meant to be for our support. Single, live-in caregivers, while given resplendent lip service, are often cheered on rather like a coach cheers a football team: We are told how wonderful our dedication is, then admonished that we should "take better care of ourselves", not "lose" our lives, take advantage of all our resources (which, more often than not, are hell to negotiate, even the most well-meaning ones), and sent back into the field with 'meet the challenge' pep talks. Coaches, though, know by doing what their players are experiencing and are aware that much rides on the individual player's willingness to participate. This isn't the case with advisers to caregivers for the old. Few people who advise us have given intense, live-in care alone to the old and dealt with attempting to help someone live her or his life on an increasingly dependent basis while negotiating the inevitable lack of resources, or the availability of resources that aren't really resources and increase the aggravation of the caregiver, rather than alleviate it. I'll bet, most often, their advice is created from reading about the experience rather than living it.
- posted by gail rae @ 13:03  0 comments   email...this post

 
Late, Again
    It's been a month, almost exactly, since I started this diary and last posted to it. Had I not received an email from someone who ran across it, it might have been another month before I returned to it. To those of you reading, forgive my laxity. The days have been busy, caretaking intense, and I seem to find a variety of things to do that take precedence over going online, let alone posting. My intention to continue this diary, though, remains. Today, I am going to update this in fits and starts and provide some cursory information for those of my relatives who like to keep a close eye on my mother's condition: sometime today a list of my mother's medications, their schedule and their effects, will be posted. Perhaps a few other details, as well, to which it would be handy for them to have access, should they visit and become directly responsible for her care while they are here.
    The primary cause of my tardiness, though, has been my confusion over what to publish, when. There is so much I want to record, here, including events and observations made in the past. I think about posting and I overwhelm myself with a variety of options about what to write. This morning, I finally decided I'll simply start where I'm at and go backward, as the opportunities present themselves.
- posted by gail rae @ 12:14  0 comments   email...this post