In case you hadn't noticed, I'm not sugar-coating any of
these experiences. I think to gloss over the difficulty of having aging
parents makes those who may yet to go through it feel worse about the
reality of the feelings when their time comes to deal honestly with the
experience.
* * * * * * * *
It's been about a month and a half
since Mom was released from the nursing home. In that time, we've
striven to find our new normal, to develop a sense of routine, a sense
of rhythm to let all of our lives fall back into some semblance of
predictability (or as much as one can have with elderly, unwell
parents).
The first few weeks were intense, stressful and chaotic
- Mom had a hard time adjusting to the new boundaries of her world, and
came across as both demanding and unappreciative. Himself, my brother & I
were all tired and stressed, worrying about getting everything just
right and not missing some key component. Her first weekend home
included yelling and tears on both her part and mine, but it helped us
both see where the other was coming from and the path has been smoother
since.
We seem to have resolved the caregiver issue, but not
without challenges. Mom has opinions on everything from how soon after
the dishwasher stops it should be unloaded, to how often laundry should
be done. We are working with her to adjust her expectations in matters
like this.
We often said that in the dynamic of my parents
relationship, Dad was the body and Mom was the brains. Since Dad's
stroke, it fell to Mom to ensure bills were paid, appointments made and
kept, meals made and served while she relied on Dad to fetch and carry
and bring. All that has changed. One of the hardest adaptations for
Mom is how much frailer Dad became in the 4 months she was away. He is
even more unsteady on his feet, had a spell of falling repeatedly, and
we have had to tell both her and her caregivers that he cannot go to the
basement and he cannot carry anything heavy or unwieldy.
Where
Mom was once on top of everything, we see a significant degradation in
her ability to process information, to remember things, to follow a
complex conversation. She is easily overwhelmed with information. After a
few very frustrating interactions, I have had to learn to provide her
with information in small chunks, a definite change from the
balls-to-the-wall, get-it-all-done-NOW mode I was in for the weeks
leading up to her discharge. As someone who once planned the food
services for a high school on a monthly basis, Mom is now challenged by
planning for seven days of meals to make a grocery list. So we have a
method for that, which includes a pre-printed list of the things she
most commonly orders, with boxes to mark a quantity because she
struggles to write. Once a week, we go over her list and talk about
whether or not she has enough proteins for 7 dinners, and will she have
leftovers or sandwiches for lunches.
I make charts, lists,
reminders - anything to make it easier on her. To the grocery list I
have now added a meal planner to help her think it through; she has a
form to chart her blood glucose, and a chart to show what medications
are taken when (although we fill her pill case weekly, she is reassured
that she can grab this chart in an emergency).
In the meantime,
as my brother puts it, "Dad has gotten what he wanted, for good or ill. Mom is
home." She casts a large shadow, and almost immediately upon her
return, Dad faded into it. He sits quietly most of the time, waiting for
instructions or ways to help her. He gets upset if he's told he can't
do things for her because they are risky to him - "I will take care of
her! She's MY wife!" he insists. But helping move her, fetching and
carrying for her (because she will still tell him to and he will still
do it, no matter what we say) is hurting him. His back aches, and his
hip, and the ankle that he broke which never healed right because he
wouldn't wear the boot. When company comes, he's happy to see them but
she dominates the conversations. He misplaced the opener for the garage
door that goes to the ramp; she yelled at him. He lost his house keys;
she called him names. It's heartbreaking no matter what - when she
wasn't home, he pined for her, asked repeatedly to be taken to see her.
Now that she's home, he is trying so hard for her and very often it's
just not good enough.
In the meantime, we do the best we can for
them. My brother stops during the week to take trash bins up or down from the
curb. Except for this weekend, I go each Sunday to get the grocery list,
fill the pill cases and check the grocery supply in fridge, freezer and
pantry to ensure she isn't ordering things she already has. The guys have built the ramp, installed grab bars, removed doors and
anything else that needs modifying. I schedule the handicapped bus for
appointments, make sure the bills are paid, the groceries and personal
care supplies ordered and interface with her doctors.
This is
our new normal - making the best life we can for them in their last
years, the way they made the best life they could for us.
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