caregiving

Caregiving and the Super Bowl

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Heart in handsThis is NOT an article about football.  Anyone who has a loved one for whom they provide care – whether hands-on or peripheral – knows all too well how unpredictable life can be with that 24/7 responsibility.  We’d all like to think that special occasions and events are immune from medical emergencies and other disasters, but all too often that is not the case.

Welcome to the life of a caregiver.

I honestly didn’t think I had another football article in me but the unfortunate circumstances in my best friend’s life have proven otherwise.  Read the rest of this entry »

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Do you believe in magic?

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Horoscope chartMy December 29, 2012 Horoscope:

Today is a 7.  Now’s perfect to start a new writing project; no need to wait until next year.  Put down your thoughts without worrying about form, one word at a time.

Prior to 12/29/2012 I would have stood by my belief that Horoscopes are merely faulty predictions by faulty people provided to those of us who are humored by such baseless declarations of personalized present and future outcomes.

But that personalized declaration for Irene on a day in late December 2012 was right on the money.

Computer stationThe backstory: During the summer of 2012 I made the decision to write a novel that focuses on the lives of caregivers of loved ones with Alzheimer’s and other dementia.  The focus would be split with equal attention spent on the person with the disease.  My book’s mission: to put a personal face on those every day people (that’s you and me) thrust onto the memory-removing disease journey.  Once I made the decision to write a book, I set January 1, 2013 as the start date for my project.

That start date was moved up based on the extremely accurate Horoscope (see above) for this wannabe author whose birthday fell under the sign of the bull: Taurus.

I obeyed the directive and sat at my computer that very day and managed to write page after page of content.  Wow!  I’m writing a novel!  It was quite exhilarating being able to spew page after page of fictional story line based on experiences I had with my father, my sister-in-law, and the many people with whom I became acquainted during my years of work with vulnerable adults.

I finished the “final” version of my manuscript earlier this month and set the timeline for next steps: starting January 1, 2015 I will actively seek representation for my novel.  Oddly enough, that seems to jive with today’s Horoscope (2 years after the first timely Horoscope) if you force a few of the jigsaw puzzle pieces to fit what’s currently going on in my life.

My December 29, 2014 Horoscope:

Today is a 6.  Hide away somewhere peaceful and you can get some productive thinking in.  Inspire intuitive leaps.  Creative work pays well now.  Don’t squander an enticing opportunity.  Meditate on it, and your choice comes to you.  Nurture your physical health with exercise, good food and rest.

Glass Now TAMI guess I may as well get to it based on previous personal declarations that brought me to this stage of my writing career.  Seriously, why wait when I can do it now?

If you’re interested in how this all pans out for me, I hope you’ll Follow my blog for updates.  If you’re already a Follower, stay tuned for more predictions and/or fabulous outcomes.

 

 

Blogging Award: a very tardy response

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First-Best-Moment-Award-WinnerDid you ever get so busy that you received an award and didn’t go pick it up, and then you forgot that it was waiting for you?  That’s me.  Lori, one of my most favorite bloggers, has been writing her blog Let’s Talk About Family since December 2011.  This fabulous person nominated me for the Best Moment Award in May of 2013.  All I can say is that not “picking up” my award qualifies me for the Worst Moment Award, but I’ll try to make up for it with this post.

Lori’s blog family history starts with her mother’s failing health and death, and continues with her father’s life as a widower who eventually moves into an assisted living facility (ALF).  Her blog is one that I never miss.  You know how you can manage the notifications you receive so that you get a notification e-mail immediately, daily, or once weekly?  Her blog is one of those that I receive immediate notifications – I can’t wait any longer! is the way I treat her blog.  Thank you so much for opening up your life to us in the blogging world.

Rules for the Best Moment Award:

Winners post information about the nomination, thanking the person who nominated them, with their acceptance speech that can be written down or video recorded.

Winners have the privilege of awarding the next awardees (see below) The re-post should include a NEW list of people, blogs worthy of the award, and winners notify them the great news.  Winners should also post the award badge on their own website.

What makes a good acceptance speech?
Thank the people who helped you along the way, be humorous if you can to keep the reader entertained and smiling.  Provide inspiration that helps your story to touch the lives of others.

And here’s mine: I’m thrilled to be acknowledged as having something good to say from time to time.  I don’t think I’m an excellent writer, but I do have lots to say and I’m quite willing to write up a storm.  I’m the youngest of three siblings and the only one of us who has been involved in the lives of senior citizens – and everything that involvement implies – for close to two decades.  I’ve always loved people older than me; I guess it gives me comfort knowing that I’m younger than someone else.  My official responsibilities over the years involved: working in the senior housing industry both in the corporate environment and in assisted living/memory care facilities, being an Alzheimer’s Association caregiver support group facilitator, and a Certified Long-Term Care (LTC) Ombudsman for the State of Washington (an advocate for vulnerable adults living in LTC facilities.)  I’m retired from active work but I am actively still involved in being an advocate for the vulnerable by writing my first novel – a project I hope to complete by end of this year.  My novel focuses on the lives of family members who care for a loved one with Alzheimer’s or other dementia.

My nominees for the Best Moment Award are:

Kay Bransford, for Dealing with Dementia.  The reason I enjoy Kay’s blog is best described by her blog’s subtitle: A family caregiver’s journey to deliver loving care with grace and humor.  We all know there is absolutely nothing humorous about Alzheimer’s or other dementia, but humor can be found in the human interactions between caregiver and family member.  If you look for them,  you will find them.  Kay, I’ll be posting my acceptance of a different award you recently nominated me for very soon.  THANK YOU!

Dementia Poetry is an in your face journal of a daughter-in-law’s disease journey with her mother-in-law, in the form of extremely well-written poems.  The subtitle for her blog is: The Politically Incorrect Alzheimer’s Poetry Blog.

Theresa Hupp’s blog, Story and History, is a moving journal of a family’s life covering past, present, and future.  But that’s not all: Theresa is a fabulous, published author.  I’d say I’m jealous, but friends, and that’s what I consider Theresa, don’t turn green with envy – at least they shouldn’t.  Theresa, you nominated me for the Versatile Blogger Award in February of 2014, but I already received that award a couple years ago so I’m not going to claim it again, but I thank you profusely for nominating me.

Reflections on Dementia, Caregiving and Life in General is a must-read blog all the way from Singapore.  This blogger takes care of her mother who has Alzheimer’s and vascular dementia.  Her insights and her view of her world will engage you from the very first posting you read.

 

 

The tethered caregiver

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Painting courtesy of Mary Riesche Studios
Painting courtesy of Mary Riesche Studios

Imagine that you are the primary family caregiver for a loved one with dementia in your home.  You have no time to yourself while in the house so how can you possibly find the time to leave your loved one alone to complete some pressing errands?

But you do leave the house and you do leave your loved one alone at home, because you haven’t figured out how to get someone else to do those errands for you, or you don’t know how to secure someone else to watch your loved one while you do the errands.  I favor the latter option because a 24/7 caregiver absolutely must get out of the house and feed her soul while crossing items off her To Do list.

I went to Staples office supply store yesterday to pick up three items for my writing quest: a new thumb drive that I can trust to store my magnificent masterpiece of a manuscript; a new mouse pad because my right wrist and hand have worn out the previous one; and a ream of lined filler paper for taking notes and drafting new ideas.

Because it is currently back-to-school shopping time, Staples was crazy-busy yesterday.  The checkout line was very long and directly behind me was a young mother with a shopping cart filled with supplies for her two school-aged children.  An older woman with two items asked if she could please go ahead of her because she had a sick husband at home; the young mother graciously agreed to let her do so.  When it was my turn at the register, I turned to the older woman and asked her to go ahead of me to which she responded, “Oh thank you so much, you see I have a situation at home and I need to get back quickly.”

Have any of you been there – done that?

Do you know someone who has?

The following advice goes to those of you who know someone in a similar predicament as the woman at the Staples store: be the respite that person needs.  Don’t wait for them to ask for help – they won’t ask you; you must make the first move.  Put yourself in that someone’s shoes and imagine racing through your errands, all the while freaking out wondering what’s going on in the house while you’re away: the person with dementia wandering away from the house or falling down in or around the house, turning on the stove or running the water without turning either off, or letting someone inside the house who should not be inside the house.

Now it’s your turn: imagine the worst-case scenario and apply it to this situation.

Now do something about it.

Other articles to inspire you:

Solo Caregiving; Helping an Alzheimer’s Caregiver; Caregiving: Grief, Guilt, Exhaustion, and Discrimination

A normal day, caregiving style

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Approaching The Final Destination.  The attached article focuses on one caregiving journey that is coming to an end.  Chris McClellan’s caregiving journey is coming to a close because his partner, TLO, is approaching his final destination.  Recently, another blogger that I follow, who was the caregiver for her husband, Chuck, came to the end of her caregiving journey because Chuck approached, and reached, his final destination.

Each caregiver/blogger that I follow has said the same thing in almost the same words that echo how Chris describes the tenor of the day-to-day life of a caregiver: “I’ve come to realize that what I might think is a routine day, is totally off the charts by normal standards.  I’m sure most family caregivers can get in touch with that.”

Whether a loved one needs care because of cancer, as in TLO’s case, or Alzheimer’s, as in Chuck’s case, the lives of both caregiver and patient are forever changed once a diagnosis is pronounced.  The 10-15 minute medical consultation in an exam room or a doctor’s private office thrusts the recipients into the as-yet-unknown world of living with a terminal illness.

My father and my sister-in-law, both of whom have died from Alzheimer's in the past five years.
My father and my sister-in-law, both of whom died from Alzheimer’s.

My brother’s wife, Nancy, was diagnosed with mixed dementia when she was barely 65-years old.  In the first article on my brother’s caregiving blog, he also characterizes diagnosis day as the day his life, and that of his wife, changed forever.

Normal becomes a shifting paradigm that can look different from month to month or moment to moment as a loved one’s disease progresses towards its final destination.  Both caregiver and patient can’t recall – for one reason or another – what normal used to mean before the disease’s arrival in their lives.  I know from personal experience with my father, that the caregiver truly can’t imagine life without caregiving – so all-consuming and life-changing is a fatal disease in ones life.

Normal?  What does that mean?  And in the midst of caregiving, you become aware that the only escape from this new and ever-changing normal is the death of the one for whom you provide care.  What liberation!  What freedom lies on the horizon!

No, that is not what the caregiver is thinking.  He or she is focused on the here and now, because such focus is required in order to adjust to the shifting sands of normalcy.

But the end does come as it did with my father on October 13, 2007, with my sister-in-law on July 4, 2012, with Chuck in late February 2014, and as will happen with TLO once Chris and TLO’s journey comes to an end.

What we all would give for just one more day of abnormal normalcy with our loved ones.

But all journeys come to an end, and none of us would rob our loved ones of their final escape to a destination towards which their lives had been headed since their own personal diagnosis day.

Freedom from pain; freedom from physical and cognitive restrictions.  Let it be.

Victories in Caregiving

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This Magic Moment.

Mary's July Visit to Redmond 010The above mini-article, This Magic Moment, by a fellow blogger, is magnificent in its message of hope, love, and connection.

Caring for a loved one with Alzheimer’s or other dementia, in this instance a spouse, is a difficult task and so very unpredictable.  Sometimes the unpredictability brings heartache and extreme difficulty.

However …

sometimes the unpredictability results in a heart filled with renewed promise of goodness and beauty.  Celebrating every victory that comes our way – regardless of how small some may think it to be – is reason to strike up the band, blow up the party balloons, and relish the joy that exists in that very moment.

Adult children who parent their parents

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A LIFE BEYOND | SOUL BIOGRAPHIES.

The attached 7 minute film depicts a positive take on being an adult child-caregiver for ones mother.  The same could have been filmed of a spouse-caregiver because the message is the same.

Please make every effort to watch this film straight through without distraction.  I believe you will conclude – as I did – that what is depicted is beautiful beyond measure.

There is no denying that caregiving is extremely difficult.  But there are certain opportunities inherent with the task that create a link between the carer and the one being cared for that might not have been possible without dementia’s onset.

One of many walks my father and I took.
One of many walks my father and I took.

As the adult daughter most involved with my father’s care management, I can conclude that through all the difficulties of his Alzheimer’s journey, there was a certain richness to our relationship that might not have existed without the intrusion of Alzheimer’s in his and my life.  I would have preferred that he had never suffered and died from this disease – don’t get me wrong – but I’m grateful for the deeper relationship that resulted from it.

I feel blessed to have been on the caregiving journey with my father.  And my, oh my, do I still miss him.