Wednesday, April 20, 2022

Feeling Totally Unprepared...

I am sitting here struggling with what to write about next.  So I guess I will address the question that I am asked most often... How are YOU doing?  I always answer that I am doing fine.  But the truthful answer is much more complicated because it changes often.

I have not totally come to grips with the long-term.  I understand that dementia is a progressive disease with no cure yet.  I have read about and watched videos explaining the various stages of the progression and what that means for both the patient and the caregiver.  What I have not reconciled is whether or not I will be able to endure that future.  I get very emotional (yea, as much as an engineer can get emotional 😁) as I watch her frustrations with not understanding time or hearing people she cannot see when she looks around.  It is painful to watch your partner suffer, especially when I know it will worsen.  Do I need to repress the pain, knowing that it is my job to take care of her regardless?

I have recently joined a male caregivers group that meets virtually once a week.  It is something that I have resisted for a while.  I don't feel the need for it at this point in our journey, but the opportunity presented itself.  And since I don’t have any expectations about its value, it can't be anything but positive.   The group spans the range from mild cognitive impairment to late-stage Alzheimer's.  One or two caregivers have expressed that they are nearing a breaking point in terms of their ability to continue being the primary caregiver.  And that is precisely my long-term concern.  As her condition worsens, will I have the fortitude or more importantly, the patience to continue to be her primary caregiver?

We have been fortunate that Pam has not exhibited any significant anger issues yet.  But it is a fairly common trait among dementia patients.   I have seen minor signs of it when she complains about certain noises like banging dishes or when she comments about cars whizzing by us on the road.  She has criticized my comments or attitude at times.  Will I be able to maintain an even demeanor at those times?   What will happen when she exhibits a greater range of these emotions?   I admit that I am not always a patient person.   And that is a significant concern for me.

 Pam is very aware of her diagnosis and what it means for her.  That does not help much when her brain tells her that she hears her sister talking or visualizes someone sitting on the couch.  That is her reality at the time.  My response is to acknowledge what her brain is telling her.  Sometimes I need to put her at ease with what she is seeing.  For example, today, she woke up and left the bedroom, closing the door behind her.  Standing in the hall, a little confused, I asked if I could help.  She replied, "Get rid of the squirrels in the bedroom".  So I open the door, turn on the lights and walk around the room looking for the squirrels.  Obviously, there are no squirrels, but in responding that way, she feels more comfortable. 

Another recurring issue is going 'upstairs' to the bedroom.  Our condo is one floor, and most of the time, she understands that.  Occasionally her memory is of the house in Maine where our bedrooms were on the second floor.  So when she asks how to get upstairs to the bedroom, I take her hand and lead her down the hall to the bedroom.   

The other issue that I feel unprepared for is her depression.  Few people know that she has dealt with depression much of her life.  That depression exhibits as apathy most of the time.  Spending the day blankly staring at the TV is a concern.  The lack of hobbies or volunteer activities is both a manifestation of and an impairment to addressing it.  I feel totally unprepared to respond. 

I am committed to keeping her at home if at all possible.  I feel like I have no other mission at this point than to fulfill that desire.  I don't like what is going on with her disease, but there is little I can do to change it.  I let her know that every chance I get.... while she still understands it.  It hurts to see her this way.  All I can do is make sure that she is safe and comfortable. I am trying to figure out just what skills I need or what changes I need to make to get this done.




  1. I would check into the day program for Pam, where this will give you some alone time and Pam can make new friends and the day care providers will have more knowledge of caring for Pam, and possible give you a little more insight into changes Pam is going thru

  2. I completely feel for you, Cuz, although I can't really say I know what you're going through. It helps when you explain it like this. Listen to the people who tell you that the Caretaker needs Care - even if he IS an emotionless engineer. :) Love to you both.