Caregiving hits home: Will you share your advice?

Hi folks. I'm the middle son of Frank and Carolyn Kaiser. My dad's nationally syndicated columns have been running in the St. Petersburg Times since 2004. Along the way he's occasionally kept readers up to date on how the family's been doing. • That's where I come in. • I have been here in Clearwater for almost a year attempting to take care of them. When not here, I live in Milwaukee with my wife and three children. • When my dad called me last September asking for help caring for my mother, I thought, "Hey! A few weeks of care, then Florida sun and fun wouldn't be all bad." • On Sept. 4, I put down the phone and told my wife I have to go. Four hours later I was on a plane to Clearwater.

I got to the house and learned Mom's situation was really bad. She had pneumonia, and she couldn't swallow. We called an ambulance, and got her to the hospital. It would be six weeks of hospitalization and rehab before she got home.

Taking in the sun? No. I was ferrying both Mom and Dad — for medical reasons, neither is allowed to drive anymore — to doctors' appointments, tests and medical prods and pokes almost daily.

There would be more hospitalization. Mom digressed into a manic state. She also couldn't walk or talk, didn't know who she was or where she was. Often she didn't recognize family and friends.

It's been like this, more or less, since her stem cell transplant for multiple myeloma cancer in 2007.

By the middle of December, Mom again was back in the hospital and rehab. I was able to return to Milwaukee for a few days over Christmas.

A new year

Jan. 18: Mom is back home, only to again return to the doctors for more tests. Still no answer from her dozen or so doctors on what is wrong with her. They've tested for Alzheimer's, strokes, brain seizures, bipolar, you name it.

Jan. 25: Doctors keep telling me that they will figure it out, but it will take some time. Meanwhile, they change her meds again. (Picking up the 20 drugs every month for Mom and 20 or so for Dad puts me on a first-name basis with everyone at the pharmacy.)

Feb. 20: Her current meds aren't working, so Mom's back in the hospital to start all over with different drugs. And on and on it goes. Hospital, rehab and home. Hospital, rehab, home. All through this, Dad is trying to do what he can when he can. He wants to keep productive and keep his website going, although I'm delving into that, as well. SuddenlySenior.com is his longtime labor of love, and a portal for folks who have made friendships from around the world.

March-June: Again more doctors changing meds, some with strange side effects. Back to the hospital to start all over.

June 9: Mom remains in rehab. She will be there for a few weeks. Dad tells me that it's time to revisit my family. I check the schedule for doctors' appointments; I have a total of six days (June 21-26) that I can be home to see my wife and kids. (If they still know who I am!)

Once home, I feel out of place. I don't know what to do. It is the first time in months that I can take time for myself and be with my family. (And I'm still worrying about Mom and Dad, calling five, six times a day.)

June 26: Back in Florida to start it all over again. We get Mom out of rehab and see what the doctors are going to do this time. My confidence is failing.

And again I have to get into the swing of things, just as so many of you, trying to take care of housework, shopping, setting doctors' appointments, running around, never seeming to have enough time.

Mid July: Mom's home and both she and Dad have seen their cancer specialists. Both are still in remission. And as I write this, we've got no doctors' appointments and I'm hopeful to have three or four weeks to settle in and see if everything — the current treatment plan, the medications — stays on course. Just get back to some sort of normal life. It's superhard on me but 10 times harder on my dad.

My questions for you

How do you cope as a caregiver? How do you keep it together emotionally, physically, spiritually? Financially? How do you better understand the medical issues? What kind of support services work? What about dealing with extended family, and with the really tough decisions? To all those questions, I have no answers.

Physically? Too tired. Emotionally? I don't laugh. Spiritually? He will be there.

Will you do me a favor and send your tips and experiences on caregiving? From some of the feedback I've already received, I know I'm not in this alone. But perhaps we can share some support.

And thank you for reading my story.

Editor's note: Please send your tips and experiences about caregiving to LifeTimes editor Mimi Andelman. We may share them in a future issue. Include your full name, city of residence, age and daytime phone number. E-mail mimi@sptimes.com (please put "caregiving" in the subject line), or send mail to Mimi Andelman, LifeTimes, Features Department, St. Petersburg Times, P.O. Box 1121, St. Petersburg, FL 33731. Deadline: Wednesday, Aug. 3.

Caregiving hits home: Will you share your advice? 07/27/11 [Last modified: Wednesday, July 27, 2011 12:31pm]

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