Sunday, October 15, 2023

So Much Going On. So Many Decisions...

 For those that also see my Facebook page, this will be old news.  But worth repeating...

I feel compelled to give kudos, in a very public way, to my eldest daughter. As most of you know I am the primary caregiver for my wife, her mother. Dementia is an insidious disease, that takes an awful toll on both the patient and the caregiver. But whenever an opportunity comes up for me to go do something, she is the first to raise her hand. She has her hands full with a job, a husband, and three very busy boys. Yet she is always there. This is not to diminish the fact that the other two daughters help tremendously. They do. But Courtney's hand is always the first up. For that I am immensely grateful. I guess that is just an indicator that Pam and I did a pretty good job as parents. Not at all perfect. But pretty good. THANK YOU, Court.  

There is so much going on around here that I don't know where to begin.  A couple of weeks ago, were were in a quandary about  whether to try traveling to Atlanta with Pam.   My niece just got married in Italy and they have scheduled a celebration for friends and family about a month later near their home outside of Atlanta.   This niece is very special to us.  We really do not want to miss this.  But can we safely take Pam on a plane to Atlanta?  If she is having a good day, then there is no doubt that she could travel without issues.  However, a bad day could make the trip a nightmare.  Excessive daytime sleep is common with Lewy Body patients.  On a bad day, it almost seems like she is in a coma.  On a couple of occasions, I have not been able to wake her long enough to even take her meds.  Add to that, her frequent hallucinations, I dare to think of what kind of issues we would have on an airplane.  Sadly, we have decided that it would not be safe.  My oldest daughter wants me to make the trip and she would mommy-sit.  But I think it is more important for her to go. 

We left Maine in late 2020 to travel full-time in our motor home.  Because of COVID, we spent seven months in Silver Springs, Florida.  On our trip back to the Northeast, we camped at Stone Mountain, in Georgia.  We had a wonderful time visiting this niece and her then fiance.  We share the love of cooking and made raviolis together.  We also had a fantastic visit to the Botanical Gardens.  This trip would just add more great memories for everyone.   I know that she will be disappointed, but she will understand.


 We also have a lot of stuff going on in the background.  The daughters and I have an appointment with an elder attorney in mid-October.   So far I have done most of the legal documents  using the templates provided by the states.  But I want to make sure that everything is in place and done properly before we actually need to use them.  I am also adding one of the daughters as an authorized representative on all of the utility accounts.  And while our plan is to keep Pam at home rather than a memory or assisted living facility, I have begun the process developing an inventory of all of the nearby facilities, their services, and costs.  The hope is to narrow the list to a few and visit them.  If something were to happen to me or Pam's safety at home were at risk, we want to be prepared.

We anticipated a wonderful summer when we moved our motor home to a seasonal site about an hour north of here.   But that is not how the summer worked out.  The bed in the RV is tall because of the storage space and fresh water tank located under it.  Pam  had a lot of difficulty getting into and out of bed.  And I dread the thought of what would happen in an emergency.  Plus, every time we did go north it rained.  It was not a great experience.  So one of my grandsons and I retrieved the RV and it is back in storage.  Now I am faced with the decision to sell it or not.  I don't really want to sell it, but the cost of storage will add up if we are not using it.  I think that decision is getting more clear.   If we do sell the RV, then what?  I made a promise when we sold everything and left Maine that if we sold the RV I would buy another Dodge Challenger.   I loved that car.  It was more than a passion, it was almost an obsession. 


Pam has been very clear since her diagnosis that she does not want to be relegated to a facility and that she would prefer to stay at home.  While I wholeheartedly signed up to satisfy her wishes, I came to a very stark realization early this morning (about 2am).   I was asleep in the recliner in the living room when I awoke to the sound of a bell ringing.  I had given Pam a couple of bells to keep nearby in the event that she needed any help.  Awakened by the bell, I pranced to the bedroom to find her on the floor.  Much of the contents of the top of her nightstand was also on the floor and the back of her shirt was soaking wet.  In trying to get out of bed, she fell on the floor, spilling her drink all down her back.  In attempting to lift her up off the floor, I realized that I can not do this!


 The effects of the Parkinson's symptoms has caused her to lose much of her strength and range of motion in her legs.  Her inability to provide some lifting force meant that I was trying to pick up a dead weight.  I did finally get her to sit on the edge of the bed, but I was significantly out of breath.  The realization that I am not going to be able to help in all the ways necessary, hit me hard.  Thoughts of my grandfather succumbing to a heart attack trying to lift himself off the floor ran through my mind.  The local fire department says "call us, we are equipped to do this".   This event caused me to reevaluate just what it is going to mean to keep Pam at home when she can't move, or eat, or speak on her own.  My own health issues are going to make it very difficult to care for her properly.  I am agonizing over this issue.  Am I betraying her wishes or am I trying to provide the best care I can.  This emotional roller coaster continues its journey.  And I am hanging on for dear life.


  1. I am glad you have family so close - geographically and support-wise. And your extended family loves and cares about you and Pam also, Cuz.

  2. What would the pre-Parkinsons Pam say about staying at home vs a facility if she were to look at the current situation?