It is with a heavy heart that I write this blog.  It has been a hard month.  Two dear friends have passed away (one last evening) and then the husband of another dear friend passed away from Lewy Body dementia.  When one gets to be a certain age, you expect to start losing your friends.  But both girlfriends were younger than I, and left us to soon, and too suddenly.  I am glad their suffering is over, but my heart aches for those left behind.  And it brings it quite close to home with the dear friend that lost her husband to Lewy Body dementia.  Lewy Body dementia progresses much faster and is more dramatic in its presentation than Alzheimer's dementia.  Mobility is affected more.  On the other hand, Alzheimer's dementia and frontal lobe dementia progress more slowly and steadily.  There is also vascular dementia, where the person experiences small strokes, that may lead to a larger stroke.
Also this month has been the month of doctors for Bob.  We saw the neurologist and Bob was given the MMSE exam that they give during every visit.  We had not been to see the neurologist for a year, as he said there was no need to come.  Last year Bob's score on the MMSE was 12.  This year it was 3. (30 is the top score, and Bob started out at 24 nine years ago.)  I don't think you need me to help interpret this score.  The neurologist said he would always be there if we needed him, but that his job was finished, and we didn't need to return.  He said to stop the Aricept, as it obviously wasn't helping at this point, but I could start it again if things drastically declined after stopping it.  He was so kind, and asked how I was doing, and I told him I really appreciated the care and concern he had given Bob over the 9 years Bob has been his patient.  He said the primary care doctor could handle things from this point on.  We just happened to have an appointment with her the next day.  I asked her to please check his urine for an infection,  as it is so strong smelling.  Urinary tract infections can really mess with an elderly person's brain.  When my mother used to start acting weird, I always knew she had a UTI, even though she was not aware she even had it.  I wanted to be sure that an infection was not the cause of the rapid decline.  But the urinalysis came back negative for infection.  His feet have also been swelling, and the doctor looked up the side effects for the respiradone he is on to help him stay calm, and swelling of the feet is one of them.  Do we want to stop the medication? NO!  So I just try to keep his feet elevated as much as possible.  We saw the dental hygienist, and she did a good job of scrubbing his teeth.  She said the teeth looked good despite him not brushing his teeth as often as he should.  Next was the eye doctor--cataracts progressing, but he said it was up to us if we wanted to have them removed.  Since he is not driving or reading, I said no, since all the eyedrops needed for cataract surgery would be a nightmare to administer....Also this eye doctor is retiring after taking care of Bob's eyes for 40 years!  Again, I thanked him for all his years of service!
  Bob asked me the other day "Don't I have some idiosyncrasies that are hard for you to put up with?"  Bless his heart!  A few years ago, I could have said no, no more than anyone else, myself included!
But now the "idiosyncrasies" are more in number, vary from day to day, disappear and return, and happen when I  least expect it,  just to keep things interesting and to keep me off balance!  I told this on Facebook, but I must relay it here for those of you not on Facebook.  I was helping him get ready for bed one night, which is a complicated routine at best.  Finally I had him ready and told him "Come on, let me tuck you in bed."  With a twinkle in his eye he said "*uck me in bed?"  NO, NO--TUCK you in bed!
A friend asked me recently if it wasn't hard having patience every day, day after day.  YES!  But I am going to make a confession.  It was really difficult about a year ago, especially when he was in the aggressive stage, to keep my cool.  He wasn't that bad yet, and I kept thinking that on some level, he knew enough of what he was doing, that he should be more compliant and cooperative.  And I would get upset when he wasn't, which was a good share of the time.  But as things have progressed, I can see now, that he didn't have that capacity.  Now that his mental status is worse, I can accept things more the way they are, and know he can't help it, and that helps me care for him better.  Also, he is usually more agreeable now and is happy, which helps immensely.  I just pray this status continues.  I can still leave him at home, and he doesn't wander, but more and more I see that ending, as he is starting to get into things while I am gone, and especially hides things.  The other day I looked for a pair of pants and a belt for an hour.  I could NOT understand how they could just disappear into thin air.  It was revealed a short time later.  He had 2 pairs of pants on, and 2 belts on.  How did he do that???  He is gaining some weight from inactivity, and gets mad at me if I can't get his belt fastened.  I try to tell him taking off one of the 5 shirts would help, but he doesn't comprehend that.  So I bought a larger belt....Bob has also developed quite a significant tremor of his hands, and the neurologist says it is quite common for people in the latter stages of Alzheimer's to develop a Parkinsonian-like tremor.  He can still feed himself, but there may come a time he would have to be fed because of the tremors.
I am going to take another break at the end of this month and drive to St. Louis and Chattanooga to see grandkids.  I will put Bob in respite care again for the 2 weeks I am gone.  It really helps my morale to have something to look forward to, and a trip is my ultimate pleasure!  It really feels different to be traveling by myself, but I will get used to it.  Some people have said I need to get a blow up doll to sit in the passenger's seat.  That would help me out in the HOV lanes!  I am coming back election day.  Lord help us!  I will keep a full tank of gas in case the Russians try to sabotage the election and blow something up!  Seriously, pray for this country that God will be in charge.
Until next time,
Betty