Tag Archives: caregiving

December 15, 2012 · 8:33 pm

The caregiver’s curse

Mom is recovering in an amazing fashion from her major surgery that was just performed yesterday. The surgeon came to check on her today and sketch out a plan for the next few days.

Mom took the opportunity to tell the doctor about how she had cared for Dad at home for 2-3 years until his dementia became too much for her to handle at home. She had been healthy for 74 years, and then all hell broke loose.

The surgeon nodded sympathetically. “I have heard so many stories just like yours. There’s a certain level of adrenaline that kicks in to handle crisis situations, and surprisingly, that level can stay quite high for long periods of time. Then once the loved one dies, the caregiver completely loses that adrenaline boost, and that’s when sickness can kick in.”

It seems particularly cruel that the reward for doing something so selfless and loving as caring for a loved one with a disease can end up causing you to get sick, but that is reality.

Even doctors are admitting that caregiving can be hazardous to your health, but what real alternatives are there? Residential facilities are extremely expensive in the U.S. and out of the financial reach of many families.

I’m an only child. My father passed away a year ago. My mother is now sick. I quit my job to take care of her. Sure, I could put her in a facility and her life savings would be gone in a few months. Home nursing options are limited to a couple of visits per week in the small, rural town Mom lives in. I live in a big, expensive city. There are no easy options here.

We must do better for our elderly, and their families. We need more support, emotionally, physically and yes, financially.

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November 17, 2012 · 6:42 pm

Caregiving comes full circle

I recently discovered this quote from Rosalyn Carter and found it truly profound:

“There are only four kinds of people in the world – those who have been caregivers, those who are currently caregivers, those who will be caregivers and those who will need caregivers.”

That’s very true. Most people will find themselves being a caregiver or receiving care at some point in their lives. Yet I feel we have not come very far as a society in our caregiving skills. It seems like many of us wake up one day to a nightmare and spend a great deal of time scrambling to get the situation under control.

For some people with nurturing souls, caregiving comes naturally. For others of us, we feel like we have been dropped on another planet. Physically, emotionally, mentally it is often the most difficult jobs of our lives.

But with every caregiving challenge, there are lessons to be learned. With Dad, I learned that when caring for someone with dementia, being present, even when you are not recognized, is a valuable gift.

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November 15, 2012 · 7:42 pm

Chance encounters with kind souls

While tending to a loved one that is ill, you will find yourself meeting people from all walks of life that you would not otherwise meet. You will deal with the good, the bad, the indifferent. It’s just like in any other area of your life, except caregiving makes one more sensitive to every situation.

I think that’s especially true for those caring for someone with dementia. You feel obligated to advocate for those whose voice has been hijacked by disease.

But often, it’s not the doctors or even the nurses that leave the largest and most positive impression.

I remember when Dad was clinging to life in an Albuquerque hospital, there was a cleaning lady from Cuba that would come in every day. I don’t remember her name, but I remember her sweet and gentle demeanor. I remember how she carefully stepped into the room that first day, and in halting English, stated her name, told us she was from Cuba and warned us her English was not very good, but that she was learning.

Mom immediately launched into a barrage of words that there is no way the cleaning lady could comprehend. But what she did realize, because of her deep compassion, was the situation at hand. This cleaning lady worked the CCU floor, where the most critical patients were placed. I saw her sweep her gentle gaze over my father, who was sedated and connected to a bunch of machines. She offered us a beautiful, genuine smile as she turned towards us.

There are no words necessary to understand the drama that was being played out in that room. Any human with a good heart could feel it, and the cleaning lady sensed it and offered us a warm, soothing spirit as she went about her work. It’s these chance encounters, that seem so trivial at the time, that often resonate with us so much.

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October 26, 2012 · 8:02 pm

“Your mother is driving me crazy”

If you have been following my blog over the past few months (which I greatly appreciate by the way) you know I have been serving as a caregiver for my mother, who was diagnosed with colon cancer. She has made great strides in her recovery. Tomorrow, I’m going home for hopefully a three-week respite until the week of Thanksgiving. I know there are caregivers that never get a respite for years while caring for family members, so I am indeed grateful.

That said, Mom and I are like oil and water. Mom is an extrovert to the extreme; I’m an introvert to the extreme. We were never meant to live together for an extended period of time as adults. I’m a very independent person that, at 38 years old, balks at the idea of my mother telling me what and when to eat, what to wear and how to act. Mom was used to having my Dad to cater to for 40 years, and he was extremely dependent upon her. The man could not have made a cup of coffee for himself. Their relationship was a sign of the times, where the man worked outside of the home, and the woman was the queen of all things domestic.

I know it has been hard for Mom to adjust to losing a great deal of the personal control she had over her domestic life. However, as caregivers know, that doesn’t mean you allow yourself to be bullied. Setting boundaries is a very important step for caregivers, and I have stuck to mine, even if Mom has been displeased with having to deal with her adult daughter versus the little girl that she forever sees in her mind.

So bottom line, neither Mom or I are saints. We get on each other’s nerves, and that’s just the way it is. But through the most difficult of times, I have thought about one of the last sane things Dad said to me, as I was departing from a brief holiday visit a few years ago. I couldn’t wait to get away, back to my life. I told Dad to take care. Dad said, “Your mother is driving me crazy.”

Now, I’m not blaming Dad’s dementia on Mom’s control freak ways. As I said, Dad was very dependent upon Mom, long before the Alzheimer’s set in. But living with my mom these past two months does give me a better appreciation of what Dad experienced. I think Dad was much better at tuning out and letting things just roll of of him than I am.

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September 13, 2012 · 7:53 pm

Little things taken for granted

It’s easy to overlook personal mobility when it comes to growing older. Dad was able to ambulate up until the last few months of his life, and while this worried me (as he did suffer multiple falls that sent him to the ER), it also was a comfort that he wasn’t bedridden. Dad loved to walk and even if his last year was spent shuffling up and down the drab nursing home hallway, at least he wasn’t staring at a ceiling that whole time.

I went for a brief, 10-minute walk today to pick up some things from the local convenience store. The short trip is actually quite scenic, as half the way there is a walking path that borders a golf course. I have walked this same path with my parents multiple times before, but now I walk it alone. Dad is gone, and Mom is not strong enough yet for that long of a walk. She lamented that fact today, as she was so used to being independent, as Dad was before he became ill.

Most of us take our ability to walk for granted. The ability to go outside on your own, breathe fresh air and stretch your legs seems so trivial, but for my mom right now, it is not an option without someone by her side.

I don’t like to think how I will be when I get older/become sick. I have such a fierce independent streak. I’m also not a people person. At least Mom thrives on the social interactions of those who assist with her care now. All of her caregivers, from home health aides to doctors just love having Mom as a patient, because she is so easy to deal with.

I apologize in advance for the type of patient I will probably be. 🙂

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September 12, 2012 · 8:19 pm

The surprise at being called a caregiver

When Mom took care of Dad at home those first few years he had dementia, I don’t think Mom considered herself a caregiver. She was simply being the dutiful, loyal wife, taking care of her husband of almost 40 years. It was automatic, no title necessary.

I feel the same way now. I’m just a daughter taking care of her mother in need. I guess since I quit my job to take care of Mom, if someone asked me what I do for a living, I might say “family caregiver” since I’m living off of Mom for now. 🙂

So today it was odd when I received a discount for being a caregiver. It’s nice to know that caregivers are recognized in this local community (even if was just a dollar or two of savings.)

So yeah, I guess I am a caregiver. It still sounds odd, but I guess I will grow into the title.

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September 8, 2012 · 9:35 pm

When parents wear diapers

As I said previously, I’m getting a taste of what Mom went through with Dad. I’m not sure what’s more difficult to bear: when a child has to care for a parent or when a spouse has to care for a spouse (with dementia).

Now Mom asks me whether her diaper needs to be changed. We grow as close as the mother-daughter relationship can when dealing with the colostomy bag.
When you’ve dealt with that, well, you’ve earned your dutiful daughter sticker. 🙂

So far I’m hanging in there, though I do worry the stress of today will catch up with me tomorrow or next week or next month. But if my mom’s cancer or my dad’s Alzheimer’s has taught me anything, it’s to be here today.

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