This morning Mary Ann began the day feeling very weak and wobbly. She had fainted more than once during the night at commode times. She fainted more than once this morning. She took her pills with juice and yogurt, but was not interested in the usual cereal afterward. She just wanted to go back to bed. She slept for a couple of hours.
For the rest of the day, she has been able to walk only very short distances until she either fainted or couldn’t go any farther needing to sit down. She did manage to get to the car so that we could, using the wheelchair as usual, head to Perkin’s for pancakes.
While she was restless and in popping-up mode after that through suppertime, she still could not walk more than a few feet without having to sit down. That, of course, meant I was also in popping up mode.
Today has not been unlike many days in the last couple of weeks. She did seem weaker even than prior days in that period. The question is the one that is always at least in the wings but now has moved to center stage again. Is this a temporary decline or a permanent one, a new plateau on the journey down the Parkinson’s Disease and Parkinson’s Disease Dementia path?
I realize that worrying about whether it is permanent or temporary accomplishes nothing, but it just seems to be time for a little fretting on the matter. What is especially of concern with this disease is the rate of decline. We understand there is one direction this is going. The rate at which it is traveling is at issue.
The hallucinations are becoming stronger and more relentless, and the fainting is returning with a vengeance. Moments of confusion seem to be more frequent. All of those things are around all the time, so the challenge is to measure their intensity and frequency. That is easier said than done since changes for the better and for the worse are incremental and seldom consistent.
It is hard to know when the change is enough to warrant calling the Cardiologist or Neurologist. If we do, what will either of them do that is not already being done? We know the cost to be paid in destructive side effects if we raise levels of medication to control the problems as they worsen.
There is no stopping the progression of this disease. None of the medications currently available have the p0wer to slow the disease process, at least by the time the disease reaches this stage. We have pretty well exhausted the options for controling the symptoms. We are now left to the vagaries of the the daily and weekly and monthly ups and downs of the disease itself.
There may be a change for the better coming, who knows, certainly not I. We will continue to do as much as seems doable. We have a major trip scheduled at the end of this month. My hope is that the current apparent decline does not put that in jeopardy. Maybe this time, what goes down will come up again on this roller coaster ride.
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July 8, 2009 at 5:28 am
Peter,
I understand so well the frustration, concern, and helplessness caused by this decline. My husband has been almost non communicative as he has slept for the last three days for upwards to twenty hours a day. Today, however, he was pretty alert and even ate better than he had.
We are also fighting an infection that has not responded to antibiotics and are now at the point they are saying there is not much to do but watch. Although it has always been in God’s hands, at this point we have stopped the medicines and what happens will be decided by God. A very difficult choice, but one I am finding easier to face, I think!
I hope MaryAnn will start back up so you can make your trip.
July 9, 2009 at 4:34 am
Sharon, You seem to have a healthy approach in dealing with some very tough times. Your description of the circumstances suggests that your husband is in the end stages of the disease. As you say so well, we don’t have the power to control what happens. There comes a point at which trying to manipulate circumstances with Medicines no longer makes good sense. It is helpful to recognize the One who does have the power and let go of the illusion that we are in charge.
We continue to take this one day at a time. Today was no better, maybe even worse, than yesterday in terms of the fainting, weakness, and hallucinations. We will see what tomorrow brings.
July 12, 2009 at 3:53 pm
Peter,I have enjoyed reading your writings. We would like to see your yard sometime. Sorry to hear of Maryann’s decline. Praying for you both. Phyllis.