Caring Long Distance

My Aunt Eunice has resided in a nursing home since 1982 when her hip gave way due to osteoporosis at the age of 55.  Like my grandmother, my aunt always walked with a limp.  She was my dad’s younger sister and was dearly loved by her family, loved perhaps too much in that, having some developmental delays, she was protected at home and never ventured out for any kind of employment.

Only 14 years older than I, my aunt was fun to be with.  My grandfather always kept her favorite snacks at the ready, such as Royal Crown Cola and ‘Brown Mules’ in the freezer.  They bought her a piano and made sure she had lessons for years.  (That piano never seemed in tune!)  But since I didn’t have a piano, I gravitated to hers and taught myself to play hymns and other tunes when we visited.  My aunt only made it in public school through the 4th grade, but she was my buddy growing up.

After the hip fracture in 1982, she never really walked again.  She is now 88, and I am her guardian and long-distance caregiver.  My mother did this for her as long as she was able.

Our grandfather provided well for my aunt, but when her money eventually ran out, she had to rely on Medicaid.  As I may have told you previously, I visit her every few months.  Our outing for the day includes going out for breakfast and then to a store like Wal Mart to shop for whatever she needs.  Since she can’t walk, we enjoy breakfast in the car and she waits while I shop.

This arrangement has been good for a number of years.  However since my husband’s health has become fragile over the past several months, I can’t leave him overnight like I used to.

Not wanting to neglect my aunt, I came up with an idea early today on a way to let her know she is still loved.  Online I discovered there to be a grocery store within a mile of my aunt’s nursing home.  And this grocery has a fax line!

So late this afternoon my Aunt Eunice was able to enjoy a Dr. Pepper and a slice of cheese from her stash of goodies delivered by the store.

Meet Caregiver Amy Goyer

For many of us our days come down to a constant juggle between managing life, work, and caregiving.  I would like you to meet Amy Goyer, who is a primary caregiver to her parents ages 85 and 88.  She also happens to be AARP’s Family Expert and media spokesperson on a variety of caregiving issues.

November happens to be NATIONAL CAREGIVERS month.  I found a recent recorded interview with Amy Goyer most refreshing with insightful, practical ideas and suggestions.  To enjoy her interview click here.

She is the author of Juggling Life, Work, and Caregiving, loaded with tips on how to manage caregiving along with life and work.  This book is available at a discount through Amazon.com.

Is the Effort Worth It?

“Momma has very little recall with short term memory, so a card or a phone call would be enough. We all just do the best we can.”   Those were my cousin’s words for me as I was trying to decide about attending her mother’s 95th B-day celebration (out of state) set for this weekend.  I believe she had resigned herself to ‘the way things are.’

It is true, with moderate dementia, my aunt may not remember that I came to see her within a few hours after I leave.  Though she may not remember I was there, I will know that I was a part of her special day.  And her caregivers, my cousins, will feel the peace and support of having had family together, even if only for a few hours.

Thinking back to that period when my own mom was living in a nursing home miles from her loved ones and remembering a few of those slow, quiet Saturdays we used to spend together, I used to debate whether to call a few family members and say hi, or should just not bother them.  At those times I felt isolated and a bit unloved.  I wonder if our family thought that because she had dementia, that my mom had no feelings.

When family were able to make the drive to visit, I could sense her pleasure and delight as we sat quietly together.  As her disease progressed, she lost the ability to speak.  But even so, when her family showed up, there was a peace and contentment that filled the air for both of us.

What does one get a 95-year-old for her birthday? —  For my Aunt G I settled on an inexpensive necklace she can wear around her neck anytime with no fuss.

Whenever I call my cousin, as we end the phone visit, she usually asks, “Would you like to speak with Momma?”  And I always do.  My aunt has been slipping a bit with her memory for quite some time, but she can always keep up the conversation for a few moments if I do my part, asking easy questions about is she feeling well and maybe the weather.  She is still able to keep up ‘appearances’.

As many of us caregivers know, whether it be through a phone call, a note or perhaps a visit, the deep joy of connection in the moment can mean much to a loved one and their caregivers.

Permission Granted!

As a caregiver do you often wake up to days when fatigue dogs your every move?  For me those times continue to come to be rather predictable, occurring after a big push of one kind or another, whether it be traveling with my loved one or hosting a family visit.

We caregivers tend to get in a groove of caring for everyone else first.  And I do realize that you may be in a situation where there are few choices for your own physical and mental refreshment.

But what I am meaning today is keeping an open mind to caring for yourself, even if all that is possible is mentally bringing into your mind’s eye a happy thought or two.  Our loved ones, who are experiencing their own challenges of the changes that occur when no longer able to care for themselves, are unable to think about our needs as their caregivers. Their attention is on themselves.

So we must treat ourselves as gently as we can.  You know what gives you joy, the simple pleasures — be it a cup of tea, a brief walk (or longer if possible), watering plants outdoors, reading or listening to an inspiring story or a devotion, calling a friend for a brief chat, or just even a few minutes in the bathroom to be by yourself.

Or perhaps you really don’t know how to be gentle with yourself.  In such case you must explore within the parameters of your situation a few activities that provide physical and mental refreshment.

And try to dismiss that voice inside saying you are not doing enough!  I have a good friend, who gave me a few passages of inspirational advice, which I carry in my purse.  I try to commit one or two to memory to call up when needed.

My husband has experienced two major illnesses this year, a third stroke in January and gall bladder surgery recently.  I am constantly having to watch my tongue, expecting more than he is able to give.

For me the hardest periods are those transitional times of needing to take on a greater role as a caregiver, such as being the sole provider of transportation, managing family finances, etc.  It turns often into a balancing act of letting go of those tasks that can be let go of and securing assistance from an outside source or a willing family member.

Always take advantage of your local Alzheimer’s support group if you are lucky enough to have one close by.  Even if your loved one’s challenge is not dementia, you can still participate as a caregiver.

When your loved one’s strange behaviors and off-the-wall comments reveal the onset of dementia, the family faces an onslaught of decisions.  Whether we realize it or not, dealing with our loved one’s irreversible memory loss and accompanying physical symptoms are going to demand an adjustment in our lives.

Author Rosemary Barkes understands the difficulty in maintaining one’s sanity while grappling with constant unknowns.  She became desperate for answers when her own mother was diagnosed with dementia.

In her book The Dementia Dance the author shares with other families the practical wisdom she learned by trial and error, such as 1) How to minimize stress in your rapidly changing world; 2) when to take charge and when to let go; 3) tips on choosing an appropriate assisted-living facility or memory care; 4) how to economize on day-to-day items and services while maintaining quality care.

The author explains her choice of title in this way:  “Getting family members to help with managing the chaos of dementia is like being a partner in a dance of sorts, a dance that works only if you let dementia take the lead while you follow.  Whether the dance is slow and graceful or fast and furious, you can learn to cope and even find enjoyment in life.

I was privileged to enjoy this book and meet the author recently.  Short chapters make this caregiver reader friendly with many practical helps there for the taking.

Listen Up!

Much has happened health wise in our family since my last writing, dear Readers.  I will try to lay it out for you as things happened.

We were within five days of meeting our son and daughter-in-law for a four-night visit to Boston, followed by a much anticipated vacation to Ireland. It was Sunday evening and we had enjoyed a quiet dinner at an area restaurant.  As we walked out, my husband uncharacteristically took my arm as we headed toward the car, saying “If you don’t mind, I’d like to hold your arm as I feel a bit weak.”  Upon reaching our home, he went straight up to bed.

About an hour later I could hear him in the bathroom, very ill with severe nausea.  I worried that I could not support him should he falter, so I called 911.  Arriving at the hospital he was feverish and became unable to respond to questions.  In fact he could not even state his name when asked.  Unknown to me at this point was the fact that my husband was going into shock.

In the emergency room I kept getting asked, “Is this normal behavior for your husband?”  I wanted to shout, “No!!  This is not like my husband.  Something has happened to him!  He is ill.”

Extensive testing later revealed a perforated gall bladder along with a bacterial infection that had entered his bloodstream.  It was a very long night.  In the wee hours of the morning he was admitted to the hospital.  He remained not his normal self mentally.

It took some days to isolate the specific bacteria.  Surgery was successful.

When I was able to go home for a few hours, my research on the Internet revealed my husband had what used to be called, ‘Blood Poisoning’.  I caught my breath, remembering that that condition took my grandmother’s life when she was 58 in 1945.

Further reading revealed that bacterial infections in the bloodstream can alter the mental state in patients, which was happening to my husband.  He went from barely responding in the ER to talking incessantly.  I kept getting asked, “Is this behavior normal for your husband?”

I became his advocate with the medical staff, letting them know who he was when he was healthy and active, a teacher and engineer, who had lectured in the university.  I brought in his ‘Memories From My Life’ poster to display by his bedside, hoping to relay the message, “This man is very much loved and was a contributing member of society.”

And then it hit.  My taking up for my husband reminded me of the caregiving of my mother, as her memory faded due to the onset of dementia, and the desire that her attending nurses and doctors know that here was someone who was loved and regarded by her family, a dedicated classroom teacher, who inspired her students to excel.  For her too the ‘Memories From My Life’ poster let her caregivers know that she had led an active and productive life.

As the antibiotics began to take hold, my husband’s mental state began to improve.  But I remained vigilant to people ‘talking down’ to him.

I too underwent a change during his days of hospitalization, not just serving as his advocate but realizing my role at home is going to be different with added responsibilities at least for a while.   And I know this is all very familiar to you, dear caregivers.

The overseas trip will be there in time.

Healthline.com, a powerhouse of quality health information with more than 30 million monthly visitors, has recently included Memories from My Life among the Best Alzheimer’s blogs of the year! Winners selected by the Healthline Marketing Team were medically reviewed on May 4, 2015 by Dr. George T. Krucik, MD, MBA.

To view the Alzheimer’s blogs selected by Healthline.com for information and inspiration along the difficult journey of dealing with this formidable disease, click here.

To take advantage of the tremendous resources of Healthline.com, click here.


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