Maintaining involvement in family life is an appropriate entry, I believe, to talk about in this post transition year.
Yesterday was an opportunity to include Patti in a family dinner. Sounds simple? … 4 and a half hours later that ‘simple’ task was wrapped up. <grin>
60% of that time was devoted to logistics including transportation, getting Patti up and dressed, changing Depends, transferring, cutting up food, etc. I didn’t carry a stop watch but did make use of a pocket note pad. -- Patti’s care facility is only 18 miles away, so two round trips involves 72 miles of driving out of this percentage of logistical support time.
Any visit home has parameters from all involved. Patti’s desire to go to bed by 7:30 PM may as well be written in stone and on the front end Megan has to get home from school and I need to juggle time and work in the late afternoon.
In the post home caregiving era we get out of sync with the total and absolute commitment that must be made when Patti is at home. We can juggle nothing else such as a typical daily activity like mowing the lawn, run an errand, homework etc. … And Patti after a year in a care facility is accustomed to constant and fresh staff attending to her and her needs and wants. … These “different worlds’ we’ve all become used to living in can take some adjustment when we are back together. Instant adaptation is more challenging for Patti who as a result of MS progression is easily confused and frustrated.
Maintaining involvement at home is a gamble. I roll the dice because I believe it is good for everyone and I hope they don’t roll up showing craps.
Putting Patti to bed less than 30 minutes after she left home, she could not tell me ‘what’ she had for dinner, nor ‘where’ she ate dinner, nor ‘who’ she ate dinner with. MS has destroyed her short term memory. I can only hope that in the morning that her evening of family time has slipped deeper into longer term memory and she may remember.