Don’t Forget the Music!

I’m sitting at Starbucks, my home away from home, thinking about what I can write to share with you that would be meaningful, maybe helpful. The song “WE ARE FAMILY” by Sister Sledge is playing. I’m reminded of a scene in one of my all time favorite movies, “BIRDCAGE”, with Robin Williams and Nathan Lane (best John Wayne imitation ever) where all the disparate characters in Mardi Gras style costumes file out of the nightclub in a conga line singing “WE ARE FAMILY”. They are people who would never be friends or even speak to each other if they could avoid it, but suddenly they’re thrown together and through the chaos are somehow able to become friends. The music and the party atmosphere bring people together. Not unlike a gathering of family and friends at a holiday dinner, sometimes!

The music is still playing and I start to picture my own families faces dancing in a conga line. They’re all laughing and singing, really enjoying themselves. The friends and neighbors who always joined us at our holiday dinners join in. I imagine everyone gets out of their chairs, my husband and me, too. He would have been in his transfer chair in the later years, but his grandson Ty would have danced him through the line. What fun, I can see everyone singing the words we all know, “WE ARE FAM-IL-Y.”

Then we all break out into just dancing with each other. All different ages and styles. My daughters are dancing together. My twin granddaughters and their little brother are dancing as a trio. My sister and her husband are joining in. I dance with one of my husbands daughters that I hadn’t really bonded with because we live across the country from each other. I can feel tension melt as we smile, dance and sing together. What an ice breaker! Why didn’t we do this before?

How right it would be to remember, as a caregiver, to make a point of enjoying the gathering yourself. Often, it’s all just work on the holidays for us, with the satisfaction being that everyone else enjoyed themselves. Delegate more of the tasks, people are happy to help. Plan ahead, do something so that you get to enjoy the loved ones in your life now, not years from now when there’s time. Maybe.

As I visualize the many beautiful faces of my family and friends in that conga line, I’m looking back at my life, smiling and loving each one of them. Think I’ll go buy that album. Maybe you’ll join me and have your own conga line this year.

WE ARE FAM-IL-Y!

Hugs,

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You Can Fit Two People into the Bathroom on an Airplane!

  “You gotta laugh at some of the things we go through as Caregivers or you could end up crying much of the time.”

About nine months before my husband passed away in early 2010, we received an invitation to my nieces wedding in Sacramento, CA, my hometown.  She’s my only niece and there hadn’t been too many opportunities for the family to gather in many years. One of my three sisters, who I hadn’t seen in 15 years was coming with her husband from Oregon.  I didn’t have to say anything.  Ed knew that I really wanted to go to the wedding and see all my family.  It was, approximately, a two hour plane trip from San Diego. 

“Book the flight and hotel room, we’re going,” he said.  I was thrilled, but then had second thoughts.  Ed was totally blind by then and about 100 pounds.  He could stand on his own but needed guidance and support when walking or using the bathroom.  This would be a tough trip for him.  “Are you sure you feel up to this?” I asked.  “Absolutely,” was his answer.

You can see where this is going. There was no way we could get through a two hour flight without needing a bathroom.  The flight attendants stored the transfer chair safely, just within my reach where they seated us in the front row of coach. When the time came, I said, “Okay, we can do this.”  We had a special way of his getting out of a seat by putting his hands on my shoulders, me with bent knees lifting him up and walking backward so he walked forward.  Once in, getting the door closed behind me was a bit tricky.  But, it can be done.  So don’t miss out on life because of the bathroom problem.

The wedding and family reunion were wonderful.  I didn’t know until months later that Ed didn’t really know if he could get through it.  But, he knew how much I would want to see my family so he was determined.  He always said, “Love finds a way.”

I’d like to say a couple things about walking with someone who is blind and unable to walk on their own.  Caregivers often learn things the hard way.  When Ed’s eyesight first went totally, it was sudden.  Dry macular degeneration with peripheral vision only for several years.  One case in a hundred, one afternoon blood broke through the macula and started flooding one eyes vision and several days later the second.  Total blindness.  After about a year and a half enough blood had dissipated in one eye that there was a little light coming through.  The retina specialist suggested cataract surgery, which was successful. Now there was enough light showing through that he could see shadows and how many fingers I was holding up.  This doesn’t seem like much but it’s huge.  He could tell up from down and had his balance again.

At first we walked with him holding onto my shoulders facing my back. It seemed to work fine.  But he kept getting weaker.  One day we walked out the front door and I stepped down the one porch step to the walkway.  He lost balance and pulled me back on top of him as his back hit the wall and he slid down to the ground. I had caught myself so didn’t crush him. Thankfully, I had just that day,  moved very large pots with trees away from that wall.  His back would have hit the pots and been broken. “We got away in a coach!”  Another of Ed’s sayings. 

From then on, I walked backward with him facing me with his hands on my shoulders.  It worked well.  We even got a little fun out of it.  I would sing as we marched (and I do not have a good voice!), “When Johnny comes marching home again, hurrah, hurrah…” Or, “I’m march’in to New Orleans, she used to be my honey, till she stole all my money…”  You gotta laugh, it helps get you through.

Hugs,

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A Handpicked Family!

“The bond that links your true family is not one of blood, but of respect and joy in each other’s life.”

– RICHARD BACH author of, “Jonathon Livingston Seagull”

A few years ago, when my blog was new, I received a call from a reader who wanted to discuss her plans for creating a retirement home of her own, one where she could live for the remainder of her life. Since that time, I’ve heard from many women, it’s always been women, who have similar concepts but with interesting variations. People are so creative, it’s wonderful to observe. They’ve been inspired, often, by being a caregiver for someone else and wanting to keep their independence for as long as possible, as well as experience joy and companionship in later years.

That reader, from Virginia I believe, told me her husband was 5 years older then she and the likelihood of her being a widow one day was high. She was thinking about gradually converting her three bedroom house so that it would be suitable to bring in two more people who were of similar age and lifestyle. They would be like family for each other and share expenses to make it easier for all, while enjoying each other’s company. A private bathroom adjacent to each bedroom would be the greatest out of pocket expense to start. She could begin the work now, taking her time making improvements, therefore, keeping costs down by being flexible with completion dates. Once she had her two residents carefully chosen, as need developed, they could hire outside help at a much lower cost than if they were paying for services individually. She wanted to discuss any necessary improvements or pitfalls she might not have foreseen.

This sounded like a great idea on several levels. The one that stands out for me is the friendship that could be developed between the residents. I’m reminded of the 1980’s comedy television series, THE GOLDEN GIRLS. The writers were fabulous at showing the good hearts of very diverse characters. The four women became a family in the truest sense of the word. Fiction, but quite believable.

Loneliness is one of the most difficult aspects of old age. Everyone around you is young. Your friends pass on and there’s no one left who remembers things that are fond memories for you, like the popular music and movies from your generation. They didn’t share the historical events of your life and can’t reminisce about old times. The joy can go out of life prematurely.

This type of arrangement could be complicated. I’m not ignoring the potential problems I’m sure we can all come up with, but coming at it from a most positive angle at the start and preparing long before the need arises seems like a great idea if it appeals to you.

Another reader, a young woman in her 30’s!, told me she and her group of four best friends from high school, all professional women who had been meeting once a year since for girls weekend out, were thinking of buying a property together that they could convert to an upscale retirement home for themselves one day. Some of these girls had had personal caregiving experience with parents and grandparents. They are already a family.

Another, a seventy year old woman, recently widowed, was in transition currently. She and her affluent friends were looking for a property in a location they saw as perfect for their retirement, where they could socialize (for them near a golf course) and be close to shopping, restaurants and movies.

Creative people feel a need and fill it. It doesn’t matter what age or economic bracket you’re in, it is really nice to have friends around. It makes life worth living. I wish you joy in your Creativity!

Hugs,

 

 

 

Feel free to send me an email with some of your creative ideas. If you have questions, I’m happy to answer your emails. Our FAQ section answers a few common questions and my bio will give you information on my professional background in case I can help you in other matters.

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Winter Shoes

boots-by-the-fire

On a cloudy, chilly November day in Northern California, when I was in the fifth grade, the school bell rang for recess.  I stood up from my desk, along with my classmates, and headed toward the door as was the routine.  What made this particular day stand out in my memory for over fifty years is something I want to address as it relates to those who are dependent on someone else for care. 

As we made our way to the door the teacher stopped me and pointed out, in front of all the other children, that I was wearing sandals.  My feet, in clean little white socks with the top folded down neatly in white buckled leather sandals were suddenly the focus of all my classmates attention. “Patricia, you need to be wearing Winter shoes,” she said.  “Sandals are not appropriate this time of year.”  It was an order, an instruction, as if it was the homework assignment for the night.  I was ten years old, I didn’t have control over what shoes I could wear.

As is typical of me to this day, when I don’t know how best to react, in order to maintain my dignity, I said nothing and prepared to follow the other children out the door.  However, the feeling of humiliation was deep.  I remember wanting to disappear right on the spot and make it all go away.

I was a shy little girl, considered well behaved. I couldn’t tell my teacher that my family was in a bad financial position just then. That would have embarrassed my mother and father. My father had been in bed for nearly two months healing, after falling on his back from two stories up in the cannery where he worked.  My 27 year old mother (who had a ninth grade education) with four daughters and my dad to take care of, suddenly had to find a full time job and figure out how her family would survive.  She couldn’t afford to buy three of us school shoes that September if we were going to have food on the table.

All that information passed through my mind as I stood in shock.  I never mentioned it to my mother.  There was nothing she could have done.  I understood the need for maintaining dignity in that moment. I, also, understood the lack of AWARENESS and SENSITIVITY my otherwise kind and pleasant teacher was demonstrating. 

As I write this, I can see that many readers may not find my experience all that devastating.  Especially when compared to so much more truly humiliating experiences others have suffered.  That actually may make my point.

We’re all a little different, age, circumstances and other factors influence our individual responses to the actions and insensitivity of others.  The feeling of humiliation is a primary human emotion.  Deepak Chopra, in his excellent book, “REINVENTING THE BODY, RESURRECTING THE SOUL,” states that, “Someone who has been severely humiliated, especially in childhood, will be listless, unresponsive, and withdrawn; the body will feel chronically weak and helpless.”  This will be the extreme, I’m sure.  But, as Caregivers we need to be AWARE and SENSITIVE to the feelings of those whose lives are in our care.  The vulnerable need to feel safe and secure that we’re looking out for their emotional well being along with their physical needs.  We need to protect their privacy both physically and in conversation. We need to be ALERT to changes in mood and behavior and do our best to understand what may have triggered the change instead taking the easy way out and dismissing it.  We need to protect the personal items and belongings of one who cannot protect their own things.

It’s complicated.  Caregiving is a huge, often under appreciated responsibility.  The more we understand the ramifications of other people’s behavior toward the ones in our care, the more COMPASSION we can show our loved ones.  That compassion is LOVE in its purest form. LOVE is everything and comes back to us like a boomerang when we come from the heart.  My COMPASSION for Caregivers is deep and personal.  I wish I had known more when I was caring for my dear friend with Alzheimer’s, my husband and then my dad.  I hope this information helps you be the best Caregiver you can be and makes your life a little lovelier.

Hugs,

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Sleep Deprivation

sleep deprivation

In late June 2008 my husband’s doctors still couldn’t find a way to get his anxiety level down to a point where he could sleep at night. I’m not sure he ever slept during that time. I know some will think I’m stretching the truth, but I rarely got more than twenty minutes sleep at a time from late April until the fourth of July. He needed company. My husband’s psychiatrist tried several medications but was not able to figure out a solution to our sleeping problem. He said the next step was to go to a psychiatric hospital. That my husband would be under 24 hour observation and a specialist would figure out how to get him to sleep. I was desperate.

We went to the hospital (a lock down unit) and prepared for him to check in. The process was lengthy. It took hours to go through the paperwork and interviews. By the time we were done with admission my husband didn’t want to check in anymore. He said he was tired and would be more comfortable if we came back tomorrow. You can be sure I was afraid that he might not want to return the next day. He was a very clever man. He could be trying to trick me. But, that didn’t happen. He was reluctant, but wanted to find a way to sleep.

Upon arrival the next day, I asked the staff to say that the rules were that I could not stay past 8 PM or arrive before 8 AM. I was determined to get sleep now. The doctor came in and discussed our case with us. He had prescribed a medication for sleep. That day I arranged for 24 hour personal attendants and taught them everything I could about how to take care of his every need. Believe me, the people that knew us well could tell you what it took to take care of this blind, deaf, impatient man who was used to my being there for anything he needed. I wanted him to be comfortable and cared for so we would have the best chance of this working.

It was hard to leave him that night, but I did. I had the deepest nights sleep of my life. It was July 3, 2008, a night for which I shall forever be grateful. Of course, the phone rang in the morning about 7 am. He had not slept. He said the attendant was behaving badly and when was I coming back? I took a shower, got ready and drove to the hospital thinking about how dangerous it was for me to be driving.

The next day went by with visits from one or another nurse on duty and from the doctor. Tonight he would try another sleep medication. Of course, my husband was complaining so the doctor told him that he could go home as soon as he slept through the night. Well, that did it. Mind over matter? The meds worked, he slept through the 4th of July fireworks, and conned an attendant to go to a phone and call me at 6 AM the next morning. At least I had two nights sleep and the promise of more to come.

After that things were “better” in the sleep department. We saw his psychiatrist every week for a while and then less often, until my husband’s passing in March 2010. I will always be so grateful to that man.

Hugs,

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