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AUGUST 31, 2009 12:25PM

The Home-Care Diaries, Part One: The Prodigal Mom

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Well, I did it.

 

My Mom is back on Nantucket, ensconsed in a new bed in our re-arranged dining room, settling in.

 

I'm happy, but I have to admit that my first response is to feel daunted and a little overwhelmed. Seeing my mother in tne assisted living home, and later on in the depressing skilled nursing facility, it was easy to say, “I’m busting her out of this place.” And in fact, it was fairly easy: just a matter of booking plane flights and hotel rooms and moving vans and boat reservations; buying suitcases and boxes and GPS units; and doing one long day worth of manual labor, broken up over four days of beach jaunts, restaurant meals and movies – almost a vacation. It was enjoyable working with my son, and we paced ourselves expertly. True the apocalyptic California sky – harsh cloudless blue tinged with forest fire smoke – made us uneasy, the streets of downtown long beach resembled a some police staute utopia in a bad science fiction movie, with cops everywhere (I saw one of them harassing an elderly gentleman waiting for a bus, as if he were a vagrant: “What are you doing here? Where are you heading? What’s your plan?”), and bizarre street signs posting a ten O’clock curfew for anyone under eighteen and forbidding a new crime called ‘cruising’, defined as driving by any spot in the city more than three times in four hours. But we ignored all that. We had a job to do and we did it.

 The journey east was relatively easy, also, it turns out that there’s a use for all that politically correct, handicapped-friendly, wheelchair-accessible infrastructure. If you’re actually in a wheel chair, it makes life startlingly easy. A local clothing store had to install a wheel-chair elevator a few years ago after a fire, to meet our draconian building codes. It’s never been used. It always seemed absurd to me, before (especially since the second floor sells work clothes). But I’m starting to get the point. In fact, I may just walk Mom down there in her wheel chair, to give that elevator its maiden voyage. 

Our flight was delayed by a tropical storm pushing up the North-East coast, so we wound up spending the night in the Logan Airport Hilton. The comfortable beds and flat-screen television  smoothed over the convenience, and brought home to me with some force the very different world that rich people inhabit. The motel we stayed in during our time in Long Beach was a grim and utilitarian place by comparison. Walking down the dark, cement floored, cinder-block walled passageway to our room, I remarked to my son, “This is like Cabrini Green”. “But with no gang graffiti,” he pointed out. We were grateful for small favors.

 

For Mom and me,the Hilton was our last mooring: now we are launched on this unfamiliar sea. I’m getting my bearings quickly though. I knew we would need someone in the house during the day to take care of my Mom’s relatively minimal) needs – help getting to the bathroom, and reminders about her medication schedule. In case she needed me in the night, I put my cell on her speed dial. She had to go to the bathroom at 11:00, 1:30, 3:45 and 4:30. To call this grueling sleepless night a ‘wake up call’ seems both too obvious and wholly inadequate (there were four of them, after all). So now I know we need two shifts, if I’m going to be able to work and stay healthy while this adventure proceeds. The whole routine felt strangely familiar, and then thought occurred to me that this situation is in many ways like caring for a baby. You feel the same stress (Am I fucking this up?) the same lack of experience (You know people have done it before but it doesn’t seem that way), the same constriction of your life: any activity that leaves the person in your care alone has to be planned and organized well in advance. Life suddenly requires a lot more thought, as someone else’s needs take precedence over your own. Of course, the ‘baby’ in this case is a brilliant, entertaining and charming woman to whom I own an incalculable debt, which makes the comparison seem petty and petulant. But it maintains its traction, anyway.

 

I’ve spent the morning interviewing potential helpers, making initial doctor’s appointments and trying to get someone to fix our dryer -- swamped with details, trying to keep track of first impressions and phone numbers, while Mom chatted with the applicants for the job. She was very frank with them and she said something a few minutes ago that helped put the whole process in perspective:

 

“I’m happier here than I’ve been in weeks –in months. Years maybe, I don’t  know. It’s just so good to be home.”

 

Well, that’s the point, that’s was why we did it, and that’s makes the whole extraordinary journey worthwhile.

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That's a wonderful comment from your mother. I have such mixed emotions about home-care, because my own parents are both quite ill, and my brother is knocking himself out (with a caregiver), trying to keep them at home as long as possible. It is very much like caring for a baby, but the baby doesn't grow or start saying new words. I wish many, many things for my parents as they face the end of their days, including the kind of contentment you're providing for your mother. Kudos to you--and I look forward to updates.
Steven, it must feel pretty good, to hear your mom say something like that. Good enough to make it worthwhile, hard as you know it's going to be. You're a good son, a good person.
Congratulations to a wonderful son.

Mom's still here with me. Dad died 2 years ago. There are a few of us here on OS that are caretakers. Don't hesitate to call on me if you need support.

and.. It's normal to feel overwhelmed and constrained.

denese
Steven, I know how overwhelming it all can be. May I just tell you that you are doing something very special, and her acknowledging this is but one of many rewards to come.

Each day is precious with the ones we love, enjoy each moment, the good and unfamiliar. Much love to you.
Good luck, Steven! You're a swell son, and kudos for doing right by your mom! It's a hard journey, but worth it in the long run!
My own mom is 80, and so far, able to live on her own, but I know that will change someday. I hope I have the courage you have to do the right thing!
Thanks, all. Needless to say (we are on Open Salon, after all) I'll be keeping you posted ...
Been there, done that. And it was the coolest thing I've ever done. Sounds like you have a wonderful outlook on things. Enjoy!
Steven,
I have been in the home care business for thirty years and have had so many wonderful experiences. It can also be very challenging! I have two blogs one offering advice to those trying to navigate the system and the other recounting my personal experiences. I will look forward to reading your blog.

Tom Ramsberger
Steven, the non-profit I work for has as its mission "building a circle a care around the elders of the East Side, keeping them healthy and safe in their homes." We work in an area where people don't have a lot of money and don't charge for rides or visits from volunteers, although we gladly accept donations. Your mom is lucky to have you, and what you're doing is both admirable for you as a son and smart as a caregiver. You're giving your mom the opportunity to live at home, but getting the help you need to keep functioning at work and as a parent while taking on the caregiver role. We tell the caregivers we work with to remember what the airlines say and "put your own oxygen mask on first." If you don't take care of yourself you won't be able to take care of her, either. Hope it goes well for you!
Steve, you have indeed set upon a daunting task, but one you won't regret, even if you cannot care for your mom for the rest of her life. I'm about ten or twelve years ahead of you and know of whence you speak.
@mginmn said it well, "put on your own oxygen mask first."
A couple of younger cousins have asked for my advice and I only have one specific piece: Don't make long range plans for someone over about 75 years old. Younger people seem to do that and circumsances can change momentarily.
Excellent, excellent - best wishes on this adventure to you and your mother!
Dear Mr. Axelrod,

I have definitely had those "we're bustin' outta here" moments with my brilliant, independent mom in the past year. The problem is, she won't let me be the caretaker. I am still her little girl who is late for dinner because of detention. I wish she would come and live with us, but instead, she has relegated herself to a life of arduous home living, interspersed with visits to the hospital and nursing home. Good luck to you and your mom. I hope it all works out to everyone's benefit. Cheers! Kathy
Another caregiver here. Dad is blind due to macular degeneration, has dementia -- and lives with me. Hope you find a great helper.
Thank-you, Steven. My own father is in a rehab center in another state, in between the hospital and surgery. His therapists and doctors agree that his days of living independently are done. I have always purchases houses with an extra room "just in case," and now that the time is here, I can identify with the overwhelm. It hasn't yet been determined exactly what care he will need and whether or not it will be possible or appropriate to provide that for him at home, but clearly he does not want to be in a nursing home, and we don't want that for him either. I'll wish us both the best of luck and much wisdom for the journey.
Good for you. When my mother developed Alzheimer's I sincerely offered to have her come live with me. She would not hear of it. She had bought insurance specifically for that purpose and had told us that years ago, but I thought I would try. She is happy in her assisted living, has a real life (as much as one can have with Alzheimer's) but I have had her here, and have taken care of my very will father for 2 weeks, too, in my home. It's not easy, it is very far from easy. But if you can do it, and she is happy, then I commend you and wish you the very best.
Good luck to you Steven. Keep us posted. Rated for being such a wonderful son!
My hat's off to you, Steven. This is not an easy journey. I was hired to visit, do some gentle bodywork and hang with a former patient when he went into an assisted care facility. As his dementia increased, our twice a week visits expanded to 6 days a week. He would yell and lash out at other people, but, I think because he knew me before his dementia, knew I cared about him, we got along pretty well. It was a privilege to massage him, tell him stories, soothe, sing, feed, and talk with him, even when our words didn't match. It was an honor to be with him before he passed. You're giving your Mom, your son and yourself, an amazing gift.
What Sandra said. You are a good son, good writer and good human being.