July 15, 2010

Caregiving: Surprise!

Filed under: Uncategorized — Tarrant

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In November of 2008, I got a call from my mother. The house she was renting an apartment in had fallen into foreclosure. My disabled sister and my mother need a new home within the month. She needed something inexpensive, wheelchair accessible and she had to have a deposit for settling into the new place.  It all sounded impossible. We recently had paid for a cleaning service to come in to clean the apartment, so that it could be inspected for safety before my sister could come home from the hospital. My mother and sister had no money. (How little would take months to determine!)

Instead, I flew to Denver, picked up a U-Haul, and loaded my mother and sister’s belongings into it. My mother and sister flew to Chicago—the plan being that they would stay with us until we found them an apartment nearby and they could save some money.  Instead my sister would have a seizure/stroke (I never was really clear which.) on landing in Chicago and ended up in the hospital followed by a nursing facility. It has been determined that she will need skilled nursing care for life.

Meanwhile, back at the ranch, I was learning very fast that living with my mother in no way resembled the times she came and stayed before and after the births of my three children more than a decade earlier. I also learned that my mother really couldn’t live without significant help.

Surprise! Instead of being a caregiver who checked in by phone every day and brought groceries, meds, and meals over—I was a full-time caregiver.

The medications that filled the truck made my head swim.  There were boxes and boxes of them. Sorting out her schedule and dietary needs required thought. Sorting out the insurance took months of phone calls. Through all of this, I thought I would get the hang of it. Once x was done, things would go smoothly. Not always the case, but things are smoother now than they were 19 months ago.

Still, I can’t leave to run a long set of errands without making sure there is something for her to eat. I spend about 30 minutes each week putting her medications into little boxes for her to take. I shuttle her to doctor appointments and sit and take notes. I clean up messes. I have rearranged the house to make it easier for her to get around.  Sunday afternoons mean a trip to see my sister in the nursing facility-always with a “little something to cheer her up.” Those parts aren’t the hard parts really.

The hard part comes when I realize I do this for the mama she was, not the one she is now. There are days when she doesn’t remember which daughter I am or something she told me earlier. The days when she whines that I don’t spend enough time with her, take her enough places, don’t let her eat what she wants to eat, make me growl to myself.  Worse: her apologies for “being a burden.”

This frustrates me, saddens me, and sometimes causes me to react not unlike my 14-year-old daughter when she perceives her mother as being completely unfair. That does wonders for my relationship with my mother and with my partner; neither take my yelling acid tone well.

I love the fact that my kids and partner get to know my mother. I weep that they will never know my mama, the one who everyone who ever went to see the school nurse loved and confided in, the one who made fabulous meals, the one who sparkled at parties, the one who would drive her kids anywhere, the one  and sewed the best Halloween costumes ever.

Then there is this: we have often done weekend vacations. My partner and I work long hours from home and a weekend vacation is often the only thing we can budget for time-wise and work-wise. But, leaving my mother for a weekend means checking her into a hotel, making sure she has a fridge and microwave, packing her oxygen concentrator, the old clunky battery operated wheelchair, a large suitcase with meds, incontinence pads, food, clothes and getting her mentally ready to be on her own—sort of.

It is a not perfect solution. She refuses to have someone come in to take care of her while we are gone. She insists she can be left on her own. The first time we left her at the house for a weekend—she was fine. The second time, she fell and couldn’t get up. The house was locked. We were in Florida. She called me on her cell phone for help. I couldn’t help really. We would be flying home in a couple of hours. She didn’t want to call the ambulance. “How would they get in?” She didn’t believe me that the professionals had their ways.  I made some suggestions and she managed to get back into bed. I still shudder to think about it.

Now her meds are greatly reduced and she has lost 150 lbs since living here—and hasn’t fallen in months. (Knock on wood) That is an improvement, but I still don’t go anywhere without worrying about her. Walking out the door, whether for an hour or a day, means I need to plan for her; I need to either make sure she has everything she needs or take her with me and have everything she may need with me.

Caregiving is hard work. It isn’t just the physical pushing of the wheelchair and helping bathe and dress. It is balancing someone else’s schedule in your mind. It is learning to live with another member of the household. It is unpacking the last of the belongings and finding the lamp your mother has asked about every few days for the last 18 months and have her say “Oh, I forgot I had that!” and when you reply that she has asked about it repeatedly-have her suggest that you need to get a psych evaluation because she has never mentioned it.

I don’t need to worry though that I will get THAT call in the middle of the night and need to arrange flights. I still get time with Mama and that is precious–even though I grumble.

Of course, my experience isn’t the only one out there. I encourage you to read the other stories of caregiving linked on the CLB exclusive offers page and nominate YOUR caregiving hero to win a cruise from Home Instead. You can even nominate yourself.

In the meantime-say hello and tell me about caregiving experiences in your life.