Tag Archives: Caregivers

Everyone Seems To Be Better At This Or Is It Just Me

Posted in Caregiving by

Days fly by, a new post idea hits me, I either start to write or am too tired and will return to it another day and then that idea either eludes me or I can’t seem to figure out where to go from the title.

But one stream that has been current in my thoughts is why when I see other caregiver’s posts or tweets, they seem to be happier, more positive and have a better grasp on things than I do? Now I’m not saying they have a “whoo hoo my loved one has Alzheimer’s” happy, because there’s nothing happy about the disease, but wondering why am I’m failing at finding the reward in what I do as a caregiver, I’m not there yet.

They seem to be able to see the light in what can be very dark days. Their stress doesn’t pour out into their words as mine seem to do, so I often keep quiet. I’m stressed all of the time, cry…a lot, and as much as I work to handle how I react to things, sometimes I can’t hold it in. I’m trying to balance having patience, being calm in midst of the Alzheimer’s storm, even when I have to struggle with mom to get her to change clothes, her pads, or to be calm because she doesn’t “see” anyone she knows (hallucinations) with wanting to burst out and scream. Does anyone else want to scream? Are my fellow advocates handling their caregiving with grace under fire?

My sane self knows I have no control over what’s going to be said or done by mom, but my un-rational self feels I could do more, be better, try harder until my mom recognizes that I’m doing the best that I can, the best for “her”, but she never will. Caring for mom wasn’t something I was given an option to do, I’m an only child so who else would do it? My dad’s passed, mom has no siblings…it’s me. And I honestly accept my role, I knew down the line in my life I would be caring for her but you never think Alzheimer’s would enter the picture. I just wish I had a break for an hour or two.

People have said that I shouldn’t beat myself up because it has “just” been me on duty for 24/7, 365 days a year for the past 3 1/2 years, but I don’t want that to be an excuse to find my happy, to find my reward, to be the best caregiver that I can be.

I try to be a better daughter, a better caregiver, even neglecting my own self which tends to happen to caregiver’s, but how do you stop for yourself when it’s just you? I wish I could be as nurturing and encouraging to myself as I am for other caregivers or to other people period.

Mom’s declining faster and as she changes, I change, looking for ways to do old things in a new way. I’m a work in progress trying to accept what I’m doing many couldn’t or wouldn’t do day-in and day-out, but on my birthday a few days ago, I was having a great conversation with my long-time friend Sharon, as we always do.

She like others have said good things to me, but whatever good people have said that didn’t stick, this did…Before our conversation ended, she asked me to do one thing and that was to really recognize that I am doing the best that I can.

It’s challenging to realize that within myself, but perhaps it’s time to try.

A Caregiver’s Carol

Posted in Holidays by

I saw this great post/poem I found on Family Caregiver Alliance’s blog site:

December 20, 2011

By Sean Coffey, Policy Specialist, Family Caregiver Alliance

‘Twas the night before Christmas,
And all through the house, not a caregiver was stirring, not even a mouse.
The loved ones were all tucked in and asleep,
Without any grumblings-not even a peep!

The laundry was folded and clean,
Even the house had a warm Christmas sheen.
The 12 prescriptions had all been filled,
And the insurance company would send a large bill.

As the caregiver sat and relaxed for a minute,
She gathered her thoughts about how she had ‘got in it.’
Was it the phone call from Iowa last May,
Or was it in June when her father passed away?

Her brother was nice, he sometimes called,
Though when she asked him for help he’d often stone-walled,
And, yes, her sister had sent a list of suggestions,
Of 25 books filled with caregiving lessons.

The experts all said it was something you had to experience first hand,
But caring for her mom was something nobody would quite understand.
Her mother’s hip was broken, and her appetite was shrinking,
Ensures were all she was eating or drinking.

The lack of sleep she thought she could do,
But the 10 caregiving roles were all so brand new.
On chauffeur, on care coordinator, on nurse, now listen,
The number of jobs will make your forehead glisten!

So if you know a caregiver nearby,
It’s time to play St. Nick, and give them a drop-by.
Save the advice, but bring your ears wide open,
And you’ll hear the story of a person whose learnin’ about copin’

Caregiver Phases and Coping Skills

Posted in Caregiving, Tips / Tools by

It’s been a while, chalk it up as a Caregiver’s life, always something new to tend to, adjust to or figure out. I will give additional tips as I promised a few posts ago, but there are other bits of info I’d like to share first.

When I watched the webinar hosted by Leeza Gibbons, I found it to be full of information and in a way, a safe-haven of sorts. Though it was on the web and viewers weren’t together, I felt as if we were. We are or were facing the same thing, different of course depending on the person, but it’s a shared experience. I even tweeted to Leeza that when certain things were mentioned, the expression on her face was one of “this person knows exactly what I’m going through.”

In this post, I’m going to give you the Phases and Coping Skills (caregivers go through and use whether it manifests internally or externally) given by Helene Bergman, Social Worker, Certified Geriatric Care Manager, Board Member for the National Association of Professional Geriatric Care Managers who was a guest panelist on the webinar.

PHASES

  • Suspicion
  • Shock
  • Denial
  • Anger
  • Guilt
  • Bargaining
  • Acceptance

COPING SKILLS

  • Self Awareness
  • Optimism (positive toward change)
  • Flexibility Empathy (vs. Sympathy)
  • Frustration & Emotional Management
  • Sense of Humor
  • Sense of Confidence & Self-Esteem

Leeza Gibbons’ loveletter to Caregivers

Posted in Celebrity Champions by

Today is World Alzheimer’s Day, honoring the caregivers, the heroes who care for those with this fatal and progressive disease. I’ve been in this fight, unexpectedly like so many other caregivers. One minute you’re trying to figure out your own life, the next minute you’re trying to figure out a loved ones life as you put yours to the side.

The fact that I’ve become an advocate, a voice in this fight is interesting to me. It has been a tough journey and the thought of blogging about my experience or joining this fight seemed overwhelming, but then if not me, who?  Not everyone can stand and say this is what I’m dealing with, some need a helping hand or a voice to speak for them. The Alzheimer’s Association calls caregivers “Heroes”. The dictionary says a “Hero is a person who, in the opinion of others, has heroic qualities or has performed a heroic act and is regarded as a model or ideal.” I never saw myself as a hero, but as someone doing what I’m supposed to do to care for my mom. I’m thankful for being called what I could never call myself!

In honor of today, I wanted to share a love letter to caregivers written by Leeza Gibbons who is a champion advocate and hero!

Tips for Transformation

A Loveletter to Caregivers

By Leeza Gibbons

This is a love letter to all the heroes out there. The ones who should be getting parades in their honor, monuments to their glory and applause everywhere they go. They are the caregivers for someone they love with memory loss, and I can promise you that not one of them is living a life of their choosing. Somehow, someway, everything else in their lives becomes subordinate to Alzheimer’s disease.

Once you’ve been touched by Alzheimer’s disease, it begins to color your world in ways you’ve never imagined and expects you to deliver in ways you could have never expected. I’ve been re-reading the book, The Power of Now by Eckhart Tolle. I seem to get stuck at some point every time I pick it up. It’s a difficult concept for me — that we are NOT our thoughts, our essence — our true selves is something not controlled by our minds.

Try telling that to someone who is losing their mind — steadily, surely, like death in slow motion. Tell someone with Alzheimer’s disease that we are not our thoughts. We value what is rare in our culture — oil, diamonds, certain wines — if it is in short supply, we cherish it. For someone losing their memory, thoughts are more valuable than all the world’s treasures. They hold the memories being stolen by the thief called Alzheimer’s who breaks into your brain and randomly begins to rewrite your version of your life. It’s like being asked to count backwards and you know you are a getting closer to zero.

Eckhart Tolle says in his book that the trick is to be able to detach from our thoughts and observe the thinker. It’s all part of the letting go process that is so difficult for us to do — to trust that the universal power knows what it is doing. Honestly, I struggle with this. Life’s mysteries are nowhere more profound than when trying to explain this cruel disease.

But heroes don’t worry about explanations — and they don’t wait. They take action — they do what is necessary and they do it fearlessly (or at least it seems to outsiders) as Franklin P. Jones wrote: “Bravery is being the only one who knows you’re afraid.”

Heroes keep moving forward — like the wife who is up at 2 am again because her husband is wandering and she’s worried and exhausted. Or the daughter who spends every lunch hour at the office searching the Internet trying to find answers; trying to find hope. Or the ones who quit their jobs so they can move back home with mom and dad to help their parent die. The heroes are the ones who look in the mirror and wonder where they will get the energy, the patience, the perseverance and the sanity to make it through just one more day.

As a caregiver, what seems routine to others may be terribly frightening to you. Others may sympathize with the inconvenience and emotional toll, but can they identify with the icy terror of such a responsibility? Can they possibly imagine the long and scary road most caregivers look down every waking minute? A road that just goes on and on, never slowing for a respite, an oasis, a weigh station or rest stop? I know friends, colleagues and loved ones make an honest effort to “get it” but in reality, it takes another solider from the army to understand how heartbreakingly lonely it can feel.

So, this month especially, I extend my admiration and my heart to those brave souls who show up for duty every day. Having been in the trenches with you, I know that caring for someone who is forgetting is sometimes a hellish existence. And I also know it can be the transformative gift of a lifetime. Worthy of a hero.

TV/Radio Personality, Producer and Philanthropist Leeza Gibbons created The Leeza Gibbons Memory Foundation in 2002 and its signature program, Leeza’s Place, as a promise to her mother to “tell her story and make it count” after her diagnosis of Alzheimer’s disease. Leeza’s Place locations nationwide offer free services for family caregivers of loved ones with any chronic illness or disease. A recognized thought leader in the field, she wrote a book about her personal experience called “Take Your Oxygen First: Caring for Yourself while Caring for Someone with Memory Loss,” which was named one of the best consumer health books in the marketplace from Library Journal, with additional kudos from Publishers Weekly.