Special Needs

Caring for my 93-year old mom is boring sometimes (watching tapes of her favorite shows over and over --- and over), and sometimes it’s a religious experience (Lord, give me patience!), but sometimes, ---- sometimes she makes me laugh.

Mom drinks coffee throughout her day, from her waking to her bedtime (“I go to bed at 9 o’clock”). And in all that time she drinks perhaps two full cups of coffee --- perhaps. Her day always starts off with hot coffee (Good, it’s not too hot. Thank you.), and usually a piece of cake. That first sip is always the best, “Ah, that’s good coffee,” she says. And then, about a half hour to forty-five minutes later, begins a routine that is repeated often throughout the day:

Hey! This coffee is cold, --- she might say in a surprised voice.

After re-heating the nearly full cup, there is another sip taken by her, and another Ah, good. And a half hour later:

Why did you give me this cold coffee? --- surprised again. Or sometimes she might lean forward in her chair, and look over at me and say:

You’re not going to believe this, but this coffee is cold. Or,

How come this is cold? Or,

This is remarkable; it’s cold. But sometimes it happens that she says:

Wow! That’s hot! Or, This is all wet. (On some days the dementia kicks in, and her words often get confused and her meaning unclear --- and on those times I have to try and stay sharp myself, because after re-heating that cup of coffee nine or ten times I get confused and am not sure if it IS hot. :-) )

And on most days, looking sadly at the cup of coffee, she says one of my favorites, in her small, quiet voice:

This is lousy.

Some days, mom, that sums up my feelings too.

Caregiving for mom is much more tedious than I ever could have imagined. I remember how my parents cared for my younger brother, who was retarded (although that word is not PC these days; his condition probably would be described today with 3 or 4 letters, an acronym for an illness that no one could understand, or he would be labeled as a “special needs” child.) I remember the difficult days my parents had with my brother; and often I could see the tenseness in mom and dad as they fought to control their emotions. Today, they’d probably belong to some support group; I do.

And outside of that support group, outside that immediate family situation, no one would understand what they felt.

It’s hard to see someone you love become someone different. Couples divorce when one changes, but very often when one changes in a physical way, developing special physical needs, whether due to illness or old age, the remaining spouse honors the “in sickness or in health” vow they made. And despite their spouse changing, their love remains and drives their dedicated, caring actions, even if the love that remains is only for who their spouse used to be. And for the caregiver, some days trying to remember that love are harder than others.

Looking back, my parents were saintly in their care of my brother. Even on the worst days they showed tremendous patience, and yes, love. On some days, caring for my mom is a problem for me, but there are so many good memories to recall, and mom and I sometimes share them together, looking at pictures on the wall, or those stored on my computer. And even if she’s forgotten them, I haven’t. Caring for a “special needs” child, however, like my parents did for 45 years must have been so much more difficult --- the difficult times with my brother spanned his whole life, not just starting at some point, starting after many years of good memories and love. How hard it must have been to love, when the good memories were so few.

I wrote here, once, about how my dad broke down one time --- one time in forty five years --- and in his frustration punished my brother, crying as he did it. I received a couple of critical comments to that post, chastising dad’s action.

With each passing year of caring for my mom, I better appreciate the love they felt toward my brother, and I appreciate the tremendous love of others who care for an elderly parent or a “special” child --- so many I see, some even in my support group, have much more difficult situations than mine. And so often they alone are the caregiver, caring and loving, alone, as the one cared for cannot love back any more.

I tried to write, today, of some of the humorous things I see in caring for mom --- sometimes I have to look for them. And sometimes in the caregiver’s group meeting we share the good times too --- even if we have to give ourselves time to remember them.

I guess the reason for writing these things is to document a reminder to myself. Special needs require special love. I’m not writing to pat myself on the back, but to remind myself to remember the good times. Yesterday I wrote about the Parable of the Sower, and how we all tend to focus on the bad results we see around us, despite our good efforts. This is a “Reminder to Self” note, to read yesterday’s post again also. So many good things may be happening that we don’t understand today, and perhaps we never will. But despite this, have faith, and just sow love. Just sow.

If you get a chance, my friend, you might call out a “Hey!” to someone you know who is caring for a parent or a “special” child. Your little “I admire what you’re doing; let’s get together for coffee,” or just a silly e-mail card, may seem to them to be a seed sown by them that yielded good fruit --- and they need to see that success sometimes during their day, and not just in their memories --- or, sometimes to just laugh.


P.S.
After writing this down, I stayed in the chapel praying the rosary. It was during the Third Joyful Mystery, the Birth of Our Lord, when the cell phone buzzed in my pocket --- a text message had arrived. Glancing at it, in case it had something to do with mom, I saw that it was from a number I did not recognize. A stranger had mistakenly sent me a text message. The message? “Hey!”