Whatever happens today, last night we both got a good quality, long night’s sleep.  Mary Ann is still sleeping.  It is a little after 9:30am.  Because of Veteran’s Day yesterday, Bath Aide Zandra did not come.  She has arranged to come later this morning, so Mary Ann will need to be up soon.

Later: Mary Ann made it up in time to get her meds taken before Zandra arrived. She has had another loose stool (sorry!) which has been happening for many days now.  It raises the question as to whether or not there might be some sort of bug causing some of her problems.  We will wait it out.  So far it is manageable.  i just want to be sure Mary Ann doesn’t get dehydrated.  Checking urine color (sorry again!) should provide evidence one way or the other on that.  We will not involve doctors and hospitals unless there is something clearly demanding that involvement.  If the weight loss continues, I will probably phone the GP’s office for a recommendation of a supplement.  Actually, I will also check with the LBD Spouse Caregivers online group.  They have far more experience with what works than any medical professional.  It seems clear that Mary Ann is just not getting enough calories in to maintain her weight.  Oh how I wish I could painlessly transfer about twenty pounds from me to her. I tried to get her to eat a some spectacularly sweet and tasty and moist cherry (homegrown and canned) and nut coffee cake that Maureen brought yesterday.  She just wouldn’t eat anything.  I, of course, had a huge piece.

After the intestinal activity, Mary Ann decided to lie down again.  She has seemed very tired since getting up this morning.

Gratefully, whatever strain lifting Mary Ann from the floor the other night seems to have been healing on its own.  The physical demands on Caregivers are often substantial and constant.  When I read the online posts of other caregiving spouses, I wonder how on earth they can do it.  Most of them are women, many of them my age or older.  Some of them have husbands who weigh two or three hundred pounds (one is a former heavy weight boxer).  I have no idea how they deal with the demands.  Many have a Hoyer lift to use when necessary.  We have one also, but have needed to use it only a couple of time in the years we have had it.

The physical demands of course include helping Mary Ann up from the floor when she falls.  Our system is not necessarily recommended by physical therapists, but has worked for us for many years.  When she has fallen, I work at sliding her (by pulling on her legs) into an open space where she can lie on her back with her feet toward me and her head away from me.  I put my feet together in front of hers so that they won’t slide, she reaches up and I take hold of her hands.  I rock back, using my weight as a counter balance so that my back is not involved in the process of lifting.

The risks in that approach are mostly to Mary Ann’s arms and shoulders.  Again, since she is not heavy and we have been doing it for so many years, her arms and shoulders seem strong enough to manage.  So far there have been no noticeable side effects to that process.

One of the movements that has created problems for me in the past, is that which is required to turn Mary Ann in bed and move her to the center of the bed so that she doesn’t risk falling off the side of the bed (been there!).  We have single, adjustable beds.  For many years she has been able to climb on all fours on to the bed and flop down one way or another.  She has come very close to flopping right off the edge of the bed on to the floor.  Now, most of the time she simply cannot negotiate that movement.  When she tries, she usually gets stuck on all fours on the bed or with one foot still on the floor, unable to move any farther in the process.

Now, most often she sits on the side of the bed, and if she wants to lie on her left side, facing the television, I cradle her and twist her in a sort of dramatic swinging motion until she is facing the appropriate direction.  Then I lean forward, slide my arms under her and pull her toward me to center her on the bed.  That is the motion that has caused back pain in the past.  Now, I squat down and let my body weight (lot’s more than her body weight) pull her to the center of the bed.

If she wants to lie on her right side, the side of choice for her, again, she sits on the side of the bed.  I let her head down to the pillow and reach with my right hand to lift her feet on to the bed.  Then I travel to the other side of the bed to pull her to the center.  Since the size of the bedroom does not allow much space between the two beds, I often can’t seem to get accomplished the motion using my body weight.  Most often, I slide my arms under and just pull her to the center with my arm muscles, a movement not unlike doing a curl.  Again, that keeps from involving my back in the process.

Now with that image in mind, imagine the nights she is up every few minutes.  One of those two actions of moving her to the center of the bed happens every time she gets up, even just to sit on the side of the bed.  When I watch her on the monitor, if she begins to move at all, I head in to see what she needs.  Sometimes she just needs to be turned from one side to the other, or the covers have gotten twisted out of place.

When we travel, the large beds pretty much preclude my reaching under her to move her.  I can do some manipulating to help position her, but most of the options are simply won’t work.  If I try to move her much, it puts my back at risk.  It won’t help her if I am debilitated.

At the moment, one of the activities that is the most risky for both of us, is the trip to the commode.  I pull her up to a sitting position on the side of the bed and pull the commode close enough so that it only takes a transfer with a few side steps to get her into position, pull down her Pj’s and disposable and get her seated on the commode.  That part is pretty straight forward.

The risky part comes when she is finished.  I pull her up and hold her so that she can use the TP I have handed her.  Most often, she just cannot balance well enough to stand on her own.  I hold her with one arm, feeling her weight against it, knowing that if I let go she would fall back down on to the commode and over the back of it into the wall (does that description ring of experience?).  While holding her with one arm, I have to reach down first to pull up the disposable (we call it a pad), which of course binds since I can only pull from one side, the other hand attached to the arm holding her up.  It is hard for her to remember and then to have the dexterity to move her knees apart enough to get the pad through and pulled up.

Then come the pajama bottoms next.  They have always gathered at her ankles.  Reaching down all the way to the floor with one hand while holding her with the other high enough to be above her center of gravity so that I can keep her from falling challenges my flexibility and strength.  When I think of it, I remove the PJ bottoms so that I can put them on her in a separate action while she is safely sitting on the side of the bed.

The commode trips come very often since one of the problems of a compromised Parasympathetic Autonomic Nervous System is the need to urinate frequently.  The last time Daughter Lisa stayed with Mary Ann over a couple of nights, she shared with me that she was pretty concerned about the risks associated with the night time commode trips.  Both of our children are very concerned about the precarious nature of our situation.  They recognize that it would not take much to mess up our system.  If I am not able to handle Mary Ann, either due to her physical condition or mine, a whole new set of challenges would emerge.  None of us wants even to think about it, although it is hard not to do so.

One other activity has become more challenging since the hospital.  There are more times when she can’t open her eyes, and/or is almost too weak to walk making the short trip from the door to the car pretty difficult.  If this continues, I will set up the aluminum ramps and roll her down the two steps to the door of the car in her transfer chair.  Oddly, steps are far less problem to handle than walking on a level floor to those with Parkinson’s.  Steps usually are her best thing.

While I need cardio-vascular conditioning exercises, I think I am getting plenty of upper body strengthening in this caregiving role.

It is still only mid-day, but this has gotten far too long — as have most of the recent posts.  She is still sleeping.  I hope to get her in the car and to the grocery store this afternoon.  We will see.

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