Thursday, September 8, 2016 – afternoon

Just like Sinatra, Mom wants to do things her way, but for how long can we keep the current arrangement afloat?

We have a schedule where neighbor Kevin takes Mom to see Dad four days a week, and a staff person from BrightStar takes her three days a week.  She’s required to have a companion in order to spend time with Dad.  Kevin also keeps tabs on her, making sure she’s eating, watching her come and go, and assisting if she requests help.

So far the schedule is working out, except for the fact that she doesn’t seem to remember if she has seen Dad…or if she remembers, the memory is vague.  Kevin tells me it’s not unusual for Mom to visit Dad in the morning with a BrightStar person and then 20 minutes after being brought home, she’s at Kevin’s door saying she needs to go see Victor.

Poor Kevin.  He’s been next door for over 20 years and has helped my folks through more than a few of Dad’s medical emergencies.  But now with Mom’s vascular dementia and short-term memory loss in full bloom, Kevin and his wife, Sue, get very little peace.  Mom frequently calls or rings their doorbell.  I’ve suggested they not always answer the phone/door…but good-hearted Kevin worries that “it might be an emergency.”  In short, Mom is driving Kevin kind of crazy.

In addition, Kevin isn’t crazy about spending time in Dad’s wing.  With Dad’s increasing agitation, Mom’s emotional outbursts before, during, and after she visits him, and the shouting, singing and cries of other residents, it’s not an easy place to be.  The staff, however, are wonderful folks who do their best to keep residents in the C wing comfortable.  It’s a huge undertaking.

Hospice Assessment

Yesterday I received a status update from Sherry, a nurse in Dad’s wing.  She reported increased agitation that isn’t responding to some medicine, refusal to eat or drink much, loss of weight, and having some blood and urine tests done.  The doctor has approved an assessment by hospice, and Sherry is fairly certain he will qualify.

I’m just curious.  I wonder what hospice does for someone like my Dad.  Maybe they make medicine adjustments by adding or deleting.  The goal is to help Dad be more comfortable and I don’t know how that’s done when he’s so agitated and the medicine they have been using is no longer helping.  I’ve posted a question on agingcare.com and hope some people respond.

I’ve requested that hospice not be discussed with Mom.  She’ll be confused and potentially hysterical.  Just tell her Dad is receiving some extra care.  I return in two weeks and I will want to talk with her gently and coach her on Dad’s decline.   It’s not like she’s unaware; she reminds me that he is to be cremated and she wants a little bit of his ashes to keep.  However, recently when I asked her, “How’s Dad?” her response was, “Oh, fine.  He’s pretty quiet.  Looks good.  Doing better than I am!” …when, in fact, I’m told by others of his outbursts, agitation and decline, which were evident during my last visit.

We’ll see what the blood and urine tests indicate and see if Dad is approved for hospice care at this time.  I certainly hope so.

Worried about Mom

Meanwhile, Mom is doing things her way, but when I talk to her on the phone she is miserable most of the time.  She’s in her own home and by herself as she wants.  However, loneliness and boredom are taking their toll.  Confusion continues big time:

• Not remembering if she brought his laundry home
• Not remembering if she saw him in the morning
• Not remembering if she got the mail
• Not remembering what day it is
• Not remembering that the TV remote is not the phone
• Not remembering that the phone is not the TV remote
• Not remembering how to use the TV remote
• Not remembering if she has food in the house until I prompt her to look
• Not remembering she has funds until I prompt her to look for her bank books
• Continued confusion with mail and the list of important phone numbers typed for her and posted on the refrigerator door
• Difficulties dialing the phone

It’s a good thing I am managing the house accounts and the account for Dad’s care.  She asked me to do that a year or so ago.  Most of the time she cannot remember where she put her bank books…and she still calls me on occasion, angry that she does not have her own checking account.  Then I remind her that she does, where it was the last time I saw it, and she calms down after finding it – again and again and again.

Assisted Living…Maybe?

Although she is basically managing one day at a time, Mom is crumbling socially and psychologically. Yesterday she told me, “I hate sitting around looking at these four walls.  This is no way to live.  This is like death.  I just want to run away, so don’t be surprised if I do.”

If Mom agreed to spend the winter months in assisted living at Dad’s community, she would have more people and activities to engage her.  And if Dad’s condition worsens and he dies over the winter months, she will have people there to rally around her and keep her company until I arrive.   All these “ifs.”     Life is full of them, isn’t it?