The Caregiver Calling

Only three months ago we went on a trip to Hot Springs, Arkansas.  We stopped in Oklahoma City on the way to help John celebrate his 60th birthday.  We had a wonderful three days, even though it rained part of the time.  The trip back home included an overnight stop in Eureka Springs, where we visited the Thornton Chapel.  It was a very enjoyable trip.

We returned Friday night.  Saturday afternoon, Mary Ann woke up from a nap with her chest hurting.  We went to the Emergency Room and ended up spending three days in the hospital, getting fluid out of her system to relieve a relatively mild problem with Congestive Heart Failure.

Even though there had been no problem medications given to her while she was there, nothing other than lack of sleep and the distress for Mary Ann of being in the hospital, Mary Ann went home very confused and weak.  She spent the next four days sleeping.  Slowly she regained some alertness, the ability to feed herself again (most of the time) and returned to maybe 75% to 80% of where she had been before the hospital stay.

Three months later, she is hallucinating most of the time she is awake.  She is either awake half or more of most nights, confused about where she is, reacting to dreams and hallucinations, unable to distinguish between them and reality. She has not been able to sit up in a chair.  Even with the safety belt on the chair she hangs almost falling out of it.  She was finally willing to lie down in bed and watch television.  For the last hour and a half or so she has been lying in there mostly awake, taking things not visible to me and putting them in her mouth.  She can only on occasion feed herself.

This morning she told me about the hippopotamus.  She admitted that it was probably just a dream.  I was encouraged a bit that she spoke as if she knew it wasn’t real.  We were trying to find a Kleenex that had fallen in the water, and a hippopotamus appeared.  Then there were eight, she counted them then told me the number.

It is hard to absorb so much change in such a short time.  I am certainly not done challenging the medication regimen to see if there are changes that might help.

The afternoon today has gone a little better.  The hallucinations have continued but at a less intense and distressing pace.  She has had her head down most but not all of the time.

Lunch surprised me in that, while she said she did not want me to help her eat, she accepted my help anyway.  I had made a boxed pasta salad I found in the cupboard.  We happened to have some of the suggested optional additions in the house.  I did not expect her to eat it, but she was interested in tasting it.  She ate a large quantity of it.

At supper, after she allowed me to help, she ate a reasonable amount of Mary’s pork chops from the freezer and some of an Uncle Ben’s wild rice side dish.  Immediately after supper, we headed out to get my coffee refill (Mary had delivered a cup earlier today), and we got some B&R.  She managed to eat part of the two scoops on her own and then let me help her get the rest.  She had begun spending more time with the hallucinated food and the ice cream was melting.

The Cardiologist’s office called in response to the information sheet and questions concerning Mary Ann’s high blood pressure.  One question I asked was: Is there any medication that is safe to use PRN (as needed) to lower her BP when it is far too high?  The answer was, no, nothing that would not risk causing the BP to either bottom out at too low a level or rebound to too high a level.

The other question concerned the use of Midodrine when she started fainting or her BP got too low (both numbers lower than 100).  I wanted to know if I could give that to her PRN as long as the dosage and timing were in the range we have used in the past couple of years.  To that, the Cardiologist said, yes.  Those were the answers I expected.

I shared with Angela, ARNP, who made the call to me, that I was not very concerned at the moment with the fainting.  Mary Ann is almost never walking on her own any more, so the risk of hurting herself in a fall is lower.  At the moment, the seat belt on the transfer chair is most often connected to keep her from falling forward out of the chair, or she is at the table in the heavy chair with the arms, very difficult for her to get out of on her own.  If the fainting occurs on the commode, as has often been the case, she usually remains there, and I am always close, able to get to her and hold her up.  Her BP was high again this morning.

Today went all right from the perspective of my ability to handle the situation as a Caregiver.  For a time, probably between one and two hours last night when I first went to bed, the hallucinations and energy level were pretty tough to handle.  She could only lay back down sometimes for a minute or so, getting up again with no awareness that we had just been up and worked her back to lying down.  That would not be bearable on a continuing basis.

She did not have a long nap in which she was sound asleep today.  My hope is that she will be tired enough to sleep through the night tonight.

One matter that cropped up on Tuesday may demand some rethinkning of the use of one of the tools we use for creating a safe environment.  The Lifeline speaker phone sent the recorded message asking us to test the Lifeline button.  I brought it out for Mary Ann to punch.  She simply could not get it punched.  The coordination needed to get her thumb in exactly the right spot and the strength to push it hard enough to set it off just were not there.  She would never have been able to get the button pushed on her own.  I guess I need to check to see if they have something that is easier to use.  I am considering the other alternative of wearing it myself.  That way if something starts happening to me, I can push it myself, and, of course, I can push it if something happens to her.  My memory is the problem with that idea.  Remembering to put it on is one problem.  The other is remembering to take it off when I leave the house while a Volunteer is with Mary Ann.

At least today, I have not had to resort to the language of the Na’vi (see last night’s post).

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