Monday, March 13, 2006

 

Gail-The-Caregiver Bootcamp Supplemental Reading for MPS

In the Morning Before Mom Awakens:
    This will be your easiest part of the day. There aren't very many things you need to do to prepare for the beginning of Mom's day:Mom's Arising:ADDITIONAL NOTES: If she awakens and gets herself to the bathroom on her own, which happens fairly frequently, you'll still need to perform all the above chores before beginning her bathing. As well, you'll want to stagger them with frequent visits to the bathroom to assure her that you'll be with her momentarily to begin bath time, in order to keep her from getting up off the toilet voluntarily, dressing her urine covered body in clean clothes and heading out of the bathroom under her own steam. If she is having a lot of trouble breathing and/or catching her breath you'll want to run the oxygen concentrator cord into the bathroom and have her suck on oxygen throughout the bathing process. This happens very infrequently and I don't anticipate it happening on the days you handle her bath but you should be aware of this possibility, just in case it's necessary.

Pre-Bath Time:Bath Time:
ADDITIONAL NOTE: Mom is fairly capable of bathing almost all her body parts with intense coaching. The reason we don't do this is because this extends the bath portion, alone, to about an hour and a half and the amount of coaching involved is both tiring and irritating for both of us. I've had to weigh the obvious physical advantages of her bathing every part of herself against the disadvantages of a horrifically extended and enervating bath time every day and have chosen to keep bath time as short and sweet as possible by having her bathe part of herself and me bathe the rest. It keeps both of us in a good mood.
    Also, it is imperative that you keep an eye on her as she washes herself and while you're washing her to make sure she washes everything thoroughly.
ADDITIONAL NOTES: The reason you make sure her glasses and her watch are NOT on the vanity beside her during the bathing procedure is so that she does not reach for them and try to put them on during bathing, which she WILL DO if you leave them handy and in her line of sight.

Breakfast:After Breakfast Chores:After Nap Chores:Dinnertime:After DinnerBedtime:.    I'm sure, in all of this, there are things I've forgotten; like, for instance:    As you and I go through the day, I'll be coaching you all the way. It may seem to you as though I'm doing an extraordinary amount of coaching, especially on what to say and exact procedures for things that don't matter. Remember, routine is important to Mom at this point. Even the slightest deviation will sometimes throw her off, not so much confusing her as causing her to question what you're doing and why. Things go easier if you don't deviate from spoken and action routines. There will probably be many times, especially with you doing these things, that she'll say, "You don't need to do that," or, "I don't need to do that," or, "I don't want to do that," or, "I can do that myself." Do not take her word for it. Simply tell her either you or she is going to do it anyway. If she seems to need an explanation, give it to her, or I'll step in and give her the "party line".
    It's important to remember, MPS, that there is a reason, a good, experienced reason, for everything, absolutely everything, I do with her. Change is nice and sometimes stimulating but is a spice that must be used lightly and with sound judgment. Believe me, there will be plenty of "change" simply in the fact that you're being the active caregiver rather than me.
    As well, if it happens that, for instance, Mom gets visits "The Dead Zone" during your bootcamp, I'll guide you through find the information on deaths and explaining all this to her.
    At some point during the day, when the time "seems right", I'll coach you on guiding her through the very simple exercises we do every day to every other day, depending on Mom's mood. You'll need to hook her up to an oxygen tank for these, even though they aren't rigorous, just in case. These are things like, raising and lowering her knees, going up on tiptoe while sitting, chicken flapping her arms, kicking her legs from the knee, rolling her head, raising and lowering her shoulders, raising and lowering her arms, reaching above her head, rolling her ankles, standing up and sitting down a couple of times, swaying her hips side to side while she's up like she's doing the hula; I improvise a lot on these depending on how she's doing and what I think might help. Sometimes we do them while she's sitting in her rocker, sometimes I set up a kitchen chair in the living room with the platform. Just depends on how much energy she has on the day and at the time we do them. We don't use weights anymore, as she has a tendency to not control them and could very well damage her muscles, the way she swings them around.
    Preserving Mom's dignity is important. I've found, especially during procedures such as bathing and cleaning her after a bowel movement, humor and truth work very well, hand in hand with absolutely no balking on my part, no matter what I need to do. More often than not privacy is not a luxury I can afford to give her, so I rarely apologize for my presence during those times when most people would prefer to be left alone, I do not touch her with hesitation, I kid her, and myself, about such things as checking the quality of her urine, fishing her shit out of the toilet, all the amazing "things" that appear on one's body just by virtue of being old, etc.
    I won't require you to set up dishes in the dishwasher or put them away after they're clean, although I will require you to be right by my side when I do these things. I will be doing the cooking and meal planning so you won't need to do these. You will need to be right by my side when I do these things, though. You see, you aren't just going through Caregiver Bootcamp, you're going through Gail-The-Caregiver Bootcamp. I don't have any help so you can't ask anyone for help. I often have to visit with Mom while I am performing chores and functions so you'll have to do this, too. We will not be "splitting" chores because I am not able to "split" chores. Even if it's a chore I'm doing instead of you, you will have to stick right by me while I do it. If I'm in a position where I can't check on Mom at a particular moment, neither can you.
    I will also probably keep up a running commentary on the history of chores, medications, etc., so you'll get a clear understanding of why I do what I do. If you have suggestions, please feel free to offer them. I'll consider them with you and explain why I think they are either good or a bad ideas.
    I know that if Mom were in your home there would be changes in the way you take care of her, primarily because you'd have two live-in helpers. Mom and I aren't in your situation and I'm not trying to duplicate whatever situation you might create in which to care for her. I'm trying to give you as complete as possible an understanding of what I do with her every day and why.

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