It is just too soon to tell.  Mary Ann is now taking two medicines to help control the fainting due to low blood pressure when standing (Orthostatic Hypotension).  One is the standard med prescribed to control the bouts with fainting, Midodrine.  The second is a medicine prescribed off-label for helping control the BP.

I just read a post on the online of Spouse Caregivers of those with Lewy Body Dementia.  That post had specifics about their larger dose of the new med.  I have been thinking lately just how helpful it has been to be a part of that online group.

The group is a place where those who are in the throes of very difficult caregiving can vent without judgment.  In fact the opposite of judgment comes.  There are words of acceptance, affirmation of the validity of the feelings of those venting. Everyone in the group understands the crazy ups and downs that come with this disease.

Reading the many hundreds of posts over the last year or two has helped me handle things that might have frustrated me more had I not known what to expect.  I knew not only from past experience but from the group that the aftermath of the hospital stay might be a problem.

We can ask one another how her/his Loved One reacted to a particular medicine or dosage of that med.  Even alternative medications can be discovered in the posts.  There are some who see a particular doctor at the Mayo Clinic who specializes in Lewy Body Dementia.

We can talk with one another about waste management issues without having any concern for speaking in an indelicate way.  There are things that can be shared there that would not be appropriate in a blog like this.  We can talk in ways that might scare those who were not going through this particular challenge.

One thing I have gained by reading those online posts is perspective on Mary Ann’s and my situation.  The struggles of some in the group are beyond imagination.   We are among those who have been dealing with Parkinson’s the longest, but others have been dealing with the dementia much longer than we have.  Not all the spouses have Parkinson’s, but all have some form of Lewy Body Dementia or a related diagnosis.  For some the dementia has reached the last stages, where we are in the mid-range of the usual progression of the disease.  With that said, the truth is, the disesase vacillates so dramatically, that most of us have seen earlier and later stages of the disease in our Loved One’s at various times – with no warning that a change for the better or for the worse was coming.

With the perspective of the reading those posts, I celebrate how much we are still able to do, the quality of life still available to us.

Mary Ann did reasonably well today.  We slept a little later this morning, a good thing for both of us.  The morning routine is pretty time consuming, leaving too short a time to allow us to participate in a morning filled with activity at church, including a Pancake Breakfast.  We did benefit from some leftovers brought over early in the afternoon.  When she was up in the morning before her nap, she was not at her best.  There were many times that she had her eyes tightly shut as we tried to walk to and from the bathroom.

Mary Ann actually ended up in bed late in the morning for a couple of hours of napping.  After eating some of the leftovers, we went out in the car for a while, ending up with ice cream.  Our first choice for ice cream this afternoon has gone out of business, Maggie Moo’s.  The format is the same as Coldstone Creamery, only with much better quality ice cream.  We ended up at Sonic.

She was pretty alert this afternoon, and headed to bed sometime around 7pm or 7:30pm.  She has been a little restless, but as always, I am hoping for a restful night for both of us.

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