Tender Loving Eldercare» Communication

Sorry Charlie Sheen, This is What #Winning Looks Like

Linda Abbit — Tue, 19 Apr 2011 02:13:35 +0000

I’m very proud and happy to announce that my article, “Daily Activities for Late Stage Alzheimer’s Disease Patients,” has been selected as the winning entry in The Great Alzheimer’s Blogging Competition run by The Disabled Shop Blog!

These are the flattering comments the judge wrote about my post:

An excellent blog – Linda identified a need for more information about caring for someone with dementia in the later stages and answered that need with a compassionate and revealing blog. It strikes a great balance between practical advice, realism and a touching personal account of how dementia fundamentally affects a person. This is a brilliant post.

Please also take time to read the other contest entries while you’re over at The Disabled Shop Blog. They each share different and important perspectives about this horrible disease.

My greatest wish is that a cure will be found soon so that no more families have to live with this progressive and debilitating disease.

Shameless Plug :-)

Please remember you can hire me to write for your blog, business or organization. Click on the Writing & Editing Services link above for further info. Thanks!

Daily Activities for Late Stage Alzheimer’s Disease Patients

Linda Abbit — Thu, 31 Mar 2011 00:35:29 +0000

[This post is an entry for the Alzheimer's Research Blogging Competition at The Disabled Blog Shop. The deadline to enter is March 31, 2011 so there's still time to get your entry in. Please read how to enter here. You can help raise awareness of this horrible disease plus raise money for a great cause. Let's work together to find a cure!]

A Little Background

My mother lived with Alzheimer’s disease (AD) for over ten years. In the early stages, I was a long-distance caregiver, mainly providing information and support for my father who was her primary caregiver. As time passed and the disease progressed, I provided more hands-on assistance for both of them, and then became her sole family caregiver after my father passed away in 2005.

There is much written about how to interact with Alzheimer’s patients in the early and middle stages, but it’s more difficult to find information for caregiving in the later stage of the disease when the patients’ abilities have severely declined. I “winged it” in some ways as my mom reached the late stage, relying mainly on my instincts and what I thought I would like done if I was in her shoes as an AD patient.

Some think that because a patient’s abilities to think, remember and even speak decline greatly, there is no longer a “real person” in there looking out. I never agreed with that perspective and continued to operate as if my mom was a full participant in our activities. Even if she didn’t remember the activity minutes after she experienced it, I chose to believe that while she was immersed in it, it created a better quality of life for her. I realize that some would say I’m an eternal optimist, but a whole lot of good and very little (if any) harm comes from this thinking and the resulting actions.

Our “Activities To Do” List

I observed my mom’s abilities (or lack thereof) carefully, and also relied on what I knew her interests and hobbies were during her lifetime to create quality times we could share together. Here are some of the things I did with my mother while she was in the late stages of Alzheimer’s disease:

Nature Walks. I took her for walks to the park in her wheelchair when the weather allowed. She couldn’t walk or speak, but as I pushed her around the park near her home, I could see her eyes taking in all the surroundings. The sunshine on her face and body, seeing the tress and flowers, watching the children play on the swings and playground equipment — each of these sensory experiences would bring a definite, albeit passing, smile to her face. She’d always had a “green thumb” and could make anything grow, so I believe the park with its seasonal changes was an environment she definitely enjoyed.

Arts and crafts. OK, she really couldn’t do even the most basic arts and crafts projects in the late stages of Alzheimer’s disease, so I would do them for her. While I was creating a collage from magazine clippings, felt, buttons and other odds & ends, she would watch attentively, often reaching out to hold the raw materials I would be working with. {Note: I was always on guard to make sure none of these materials ended up in her mouth!}. When I would draw or color, she held on to a crayon or marker. She couldn’t use it, but she would still grasp it in her hand as she sat next to me at the kitchen table. She was a Girl Scout leader who did arts and crafts projects with our troop and at home with me, loved oil painting, all needle crafts and was a fabulous seamstress, too!

Magazines and Photo Albums. My mom was always an avid photographer; not in the professional sense, but as a recorder of family events, trips, and special times of our lives. So I would plop a family photo album in her lap and she would slowly look through and turn the pages, often stroking the photos lightly. I would talk at her (since holding a two-way conversation was impossible) about the people and scenes before her, even if she didn’t remember who the people were. You may think I’m dreaming, but I truly believe she was taking in my words and absorbing the images before her. The same activity prevailed with magazines I’d bring — “Better Homes & Gardens” and “Woman’s Day” were always her favorites, before and after she was diagnosed. Decorating and antique hunting were other life-long hobbies of hers, and those magazines may have somehow been fulfilling that which she could no longer do.

Story time. She instilled a love of reading in me from early on, and I read to her until close to her last day on earth. I think she cherished the books I’d share with her. Even when she couldn’t read the words, she still enjoyed the photographs and illustrations in books. I bought an over-sized coffee table book filled with huge, detailed photographs of flowers that she looked at until the book fell apart. I also read to her like she did to me. And when her comprehension of what I was reading disappeared, I switched to children’s books, such as “Horton Hatches the Egg” by Dr. Seuss, “Caps for Sale” by Esphyr Slobodkina and “Goodnight Moon” by Margaret Wise Brown. Sometimes she’d look at me with an amused expression that seemed to say, “Why are you reading this little kid’s book to me?” But then she’d fix her eyes on the pages and never closed the book nor stopped me from reading it to her.

Music. I know my parents both loved music! We had a piano in our home, they took me to Broadway musicals starting when I was in elementary school, and they often had records playing to sing along with. Again, we were not close to being music professionals, but I knew music was valued highly in our family. I would bring CD’s over to play for her based on what holiday was coming up or around a theme, such as patriotic songs, Big Band music or favorite musicals. We’d listen and I’d sing along. Her eyes would simply sparkle during music sessions together. I would also sing lullabies to her that she had sung to me as a child.

I believe in my heart of hearts that she got joy from the various activities we’d “do together,” and the quality of both of our lives was vastly improved by sharing them — even if they felt somewhat one-directional on my part at times. I wouldn’t have missed these experiences for anything!

If your parent, friend or relative has AD or dementia of any kind, why don’t you try the above ideas or variations on them? Or, come up with different activities based on your unique knowledge of your loved one’s level of functioning and interests.

Take-aways from my Story

Being a family caregiver has heartache in it, but also love-filled and special moments if you keep your eyes and mind open to the possibilities. Please don’t think that because a loved one’s abilities decline as a result of Alzheimer’s disease or dementia they can’t continue living a life filled with sensory richness and beauty each and every day!

Inspiring Quotes for Caregivers: Words Matter — 3/9/11

Linda Abbit — Wed, 09 Mar 2011 09:00:38 +0000

In honor of Words Matter Week, here are ten of my favorite quotes about words and how family caregivers can best use them . . . or not.

“Kind words do not cost much. Yet they accomplish much.”

~ Blaise Pascal

“The most important things are the hardest things to say.

They are the things you get ashamed of because

words diminish your feelings – words shrink things that seem timeless when

they are in your head to no more than living size when they are brought out.”

~ Stephen King

“I soothe my conscience now with the thought that it is better for hard words

to be on paper than that Mummy should carry them in her heart.”

~ Anne Frank

“A bad word whispered will echo a hundred miles.”

~ Chinese Proverb

“Sometimes when I’m talking, my words can’t keep up with my thoughts.

I wonder why we think faster than we speak. Probably so we can think twice.”

~ Bill Watterson

“We cannot learn from one another until we stop shouting at one another –

until we speak quietly enough so that our words can be heard as well as our voices.”

~ Richard M. Nixon

“Silence is more eloquent than words.”

~ Thomas Carlyle

“One of the hardest things in life is having words in your heart that you can’t utter.”

~ James Earl Jones

“The right word may be effective, but no word was ever as effective as a rightly timed pause.”

~ Mark Twain

“Expect trouble as an inevitable part of life and repeat to yourself,

the most comforting words of all – This, too, shall pass.”

~ Ann Landers

Are you careful with the words you use when you speak to your care recipient?

Do you listen to their words? Really listen?

Are you careful about what your body language says?

Are you careful with your words even when they’re asleep (or ailing) and you don’t think they can hear you?

Words matter — truly they do!

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This post is my reply to the Words Matter 2011 Day 3 Blog Challenge.

How Connected Are We Really? Lessons Learned from a Medical Emergency

Linda Abbit — Mon, 24 Jan 2011 09:00:26 +0000

Two weeks ago my friend, Penny, passed out while out dancing at a night club with a group of friends, including me.

Here are lessons I learned from this frightening night that may be helpful to people of all ages. As I write this, Penny remains in the hospital but, thankfully, is on the road to recovery. (Her name has been changed to protect her and her family’s privacy.)

While we live in an age where we think we’re constantly connected to each other via cell phones, when it comes to an emergency situation, how connected are we really?

The Emergency

Penny is a 63 year old, single woman who lives with her adult daughter, age 30, and her granddaughter, a teenager. When she collapsed that evening, she was unconscious and unable to speak or respond to us or the paramedics.

After she was rushed to the Emergency Room by the paramedics, her friends who were there tried to reach Penny’s daughter by phone. Each of us only had Penny’s home phone number in our cell phones. We knew her daughter’s name but did not have her cell phone number. We knew her son’s name but no one had his home or cell phone numbers in our phones.

As it happened, Penny’s daughter, Judy, was out for the evening and didn’t get the urgent messages we left on their home answering machine. Luckily, Penny’s granddaughter (instructed not to answer the home phone when she is home alone at night) heard us leaving the messages, called Judy on her cell phone, and she then called us from her cell phone.

This is a good reason NOT to give up your land line, as many younger people seem to be doing. How would we have reached Penny’s daughter if we couldn’t leave a message on her answering machine at home?

While We Were Waiting

As we were sitting in the waiting room of the ER, it dawned on us – did any of us have each other’s contact information in our cell phones? Would our friends know whom to call in case we were the patient in an emergency like this? The answer was a resounding “No!” We all knew our spouses’ or children’s names, but did not have the best number to reach them at, nor know whom we should call first.

On the spot we exchanged these contact numbers and entered them into our cell phones. I realized that in a stress-filled moment, I may not remember all of my friends’ family’s names so, for example, I entered “Tonys Daughter” as the first and last names in my contacts list.

Do Emergency Personnel Recommend “ICE”?

I remembered reading about “ICE” a few years ago, but wasn’t sure if it was a good idea to enter in my cell phone or not. I wondered if paramedics would look on my phone for such information if I was injured?

Yes, they do.

I called our local Police Department dispatch officer, Fire Department and local hospital emergency room staff. They all recommended people enter whom they want called and what number to use under “ICE” (which stands for “In Case of Emergency”) in their cell phones. If you want more than one person contacted in case of emergency, list them as ICE 1, ICE 2, etc.

ICE is a great idea, but what if the cell phone is damaged in the emergency, password protected, or gets separated from the injured person?

A Backup Plan for ICE

Along with having your driver’s license or some form of ID with you whenever you go out, keep a written list with emergency contacts, doctors’ contact information, and any important medical information on it. Have it with or adjacent to your ID card.

If your cell phone is damaged or separated from you, this information will be available for first responders in an emergency. The Los Angeles Fire Deparmtment wrote this on their blog in 2005:

“Please encourage your interested friends and colleagues to make a free ICE entry in their cell phone, especially if it will give them peace of mind – but never at the expense of written emergency contact and medical information.”

Because it was a crowded dance venue, Penny had left her wallet locked in the trunk of her car and did not bring it into the nightclub. The paramedics kept her cell phone, jacket and car keys with Penny, so we didn’t have a way to access the car’s trunk once they left for the ER. Luckily it worked out and we reached her family to tell them what had happened, but it did make me think about this situation long and hard. It doesn’t matter what age we are, it’s smart to be prepared for any and all emergencies.

Have you been in an emergency situation like this? What lessons did you learn? Please share them in the comment section below.

This blog post is part of a month-long series of ideas, tips and quotes for family caregivers. View additional posts from our “Caregiver Thought of the Day” series on our Facebook Page every day in January.

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Photo Credit: daryl_mitchell’s Photostream

The Caregiving Words We Use Matter

Linda Abbit — Mon, 01 Mar 2010 09:00:06 +0000

Last year while I was actively caring for my mom, I attended a special presentation for caregivers at an Alzheimer’s Family Services Center. The coordinator for the three workshops started off the morning with a brief overview and asked the audience, “How many of you are care partners?”

The audience didn’t respond.

I thought to myself, “What are care partners?”

Then he said, “How many of you are the primary person in charge of caring for someone with Alzheimer’s disease?”

Oh, he was talking about me! Then many of us raised our hands.

“Care partner” instead of “caregiver.”

Hmmm. I like the sound of that phrase, and especially what it implies. It gives the patient (or care recipient) so much more power and dignity in the relationship.

I first heard the words “care recipient” several years ago. I also prefer to use that phrase instead of “patient” which sounds clinical and detached, especially when we’re talking about a loved one we are caring for.

I wonder if the use of the phrases “care partner” and “care recipient” will catch on in our culture and the mainstream media?

Subtle Yet Powerful Distinctions

Some people probably don’t think the words we use matter, but I beg to differ. The words we say out loud, and even in our own heads, can make a huge difference in how we think and feel about others, ourselves and our actions. How we behave is influenced by what we’re thinking . . . and words are a direct reflection of our thoughts.

While on the frontline of caregiving, I heard some nurses use the word “declining” rather than “deteriorating” when describing their care recipient. A small difference in words, yet clearly a different description. If they were describing you, or someone you love, which term would you prefer they chose? One is such a kinder word to use than the other.

My strong belief that words matter also led me to adopt the use of the term “Golden Oldies” when writing or talking about senior citizens.

Some Parting Words . . .

Here is a new phrases I heard recently that I hope leaves you with a smile!

A “silver surfer” is a Golden Oldie who uses the internet!

What do you think about these caregiving words? Can you add other words or phrases to our discussion here?

What to Do After You’ve Lost Your Cool with your Aging Parents

Linda Abbit — Thu, 18 Feb 2010 05:00:22 +0000

We’re all human. We’ve probably all felt the guilt and remorse after losing our cool with our aging parents, relatives or care recipients.

Aside from feeling badly, what can we actively do to make amends after we’ve blown up at them? How do we begin to repair the relationship after a hurtful incident?

Making up may be hard, but not impossible, to do. Here are several steps to take:

1. Have a cooling off period. Let the dust settle before you engage them again. It gives everyone involved time to gain some perspective on what the issues were that set off a disagreement. This could mean several hours, days or even weeks depending upon your caregiving situation.

2. Change your mode of contact. If you visit regularly, you may want to simply touch base via phone a few times before another face-to-face visit. Or ask a sibling, spouse or adult child to take a turn or two with the caregiving duties. If you live with your care recipient, get away from home for a little while, provided they are safe to be alone for this period of time.

3. Before you visit your Golden Oldies again, resolve to arrive with a pleasant attitude and open mind about talking over the issues that caused the argument. Otherwise, it’s not time to visit them yet. You may also want to role play with a friend or colleague the scenario before you go there, to figure out how to calmly discuss the issue(s) with them. It’s best not to involve another family member in your role playing, as they may have their own emotional bias on the topic.

What If You Start Losing Your Cool All Over Again?

When you re-establish contact and visit with the intention of making amends, be tuned in and aware of your own internal signals. Are your Golden Oldies beginning to push your buttons? Do you feel your stress level rising again? If so, before the same argument starts over, it would be better to either leave or change the subject, rather than have it lead to another blow up! Try to remain cool, calm and collected as the issues are being discussed.

At the very first sign things aren’t going well however, either change the subject (“I think we all need to think about these ideas more. Can we continue this discussion another day?”) or leave gracefully (“I have to pick up XYZ before dinner — can we continue this tomorrow?”).

Then repeat the steps given above, until you can control your reactions more effectively.

I also suggest that if you sense your aging parents are becoming upset again, it may be wise for you to bail. You don’t have control over their emotional reactions, but you do not have to be subjected to any verbal abuse they may throw at you. If the same issues are starting to upset them, just stop and let it go for the time being.

As I left my parents’ home after a visit, I would often ask myself, if this was our final goodbye, would I be happy with it? I think parent-adult child relationships would be vastly improved if more family members asked this question of themselves.

Special Circumstances Apply

If your Golden Oldie has any type of memory loss, dementia or Alzheimer’s disease you must always be the one to apologize. This is due to the fact that they most likely

won’t remember the blow up; and

even if they do, they may not have the brain processing function to take the initiative to apologize

You must accept the blame when something’s wrong, even if it is a fantasy existing only in their minds. It is the kindest thing to do under the circumstances.

What techniques have you used to make amends after a blow up with your Golden Oldies or care recipients? Please leave your words of wisdom in the comments section below.

True Confessions: When I Lost Patience with My Aging Parents

Linda Abbit — Mon, 25 Jan 2010 09:00:34 +0000

In a prior post I acknowledged that in our role as family caregivers, we’ve all probably lost our patience with our aging parents or care recipients at some point. I also promised to share with you my own experience, so here goes.

I Never Lost My Patience (Part One of Two)

I was a long distance caregiver to my parents during the years my mom was in the early stages of Alzheimer’s disease. It’s easy to keep your patience when you live three thousand miles away and the caregiving consists mainly of supportive phone calls and a few short visits a year.

About two years after her diagnosis, when my parents moved to an assisted living facility in my town, my mom was at the start of the middle stage of this horrible disease. Through the excellent free resources of my local Alzheimer’s Association, I had educated myself via workshops and lots of reading about caregiving for dementia patients. I was also attending a support group for adult children of Alzheimer’s patients on a regular basis which provided more insight and other people to share experiences with.

The knowledge I gained from the time my mom was diagnosed until the time she and my dad moved here armed me with an understanding and deep compassion for people struck by any memory-impairing disease. And while I saw my parents multiple times a week once they lived nearby, I do not remember a single time when I lost patience and blew up at either one or them, face-to-face or by phone. (I just checked with my husband and he couldn’t think of any incidences like that either.)

So How Did I Keep from Losing It?

OK, this was probably a wimpy way out (or at best, passive-aggressive behavior), but I would rely completely on my husband to interact with my parents for me when I needed some space as a caregiver. As their only child, I was their sole source of emotional support, and I thought it could be extremely hurtful if I was nasty, mean or rude to them. I truly didn’t want to hurt them in any way at this stage in their lives.

I did two things that stopped me from losing patience with my parents:

1. I vented to my husband . . . a lot! I would whine and complain whenever I felt the caregiving issues and duties were overwhelming me. As an only child, one comment I often made was, “This is just too much for one person to handle!” (Of course, there are pros and cons about being a caregiver and an only child, but that’s another post.)

I must also point out, my parents were always very independent and considerate! They never expressed a desire to live with my family and only did so for a few weeks when they were moving. I always had our own home as my sanctuary to retreat to. I don’t know how I would have managed had we all lived under the same roof — which makes me sympathize even more with family caregivers who do accomplish this incredible feat with aplomb!

2. I would have my husband “run interference” for me when I was reaching my caregiving breaking point. Jeff is an absolutely extraordinary man, and I have to publicly thank him again for being such a vital part of my caregiving “village.” There were times my father would call and I just couldn’t bear to deal with whatever question or problem they had. Jeff would return the call and handle everything for me when I just couldn’t do it myself.

One particular incident really stands out in my mind. I had just arrived at Disneyland to meet a group of friends (we’re locals and had an annual pass at the time) and spend the evening dancing to a favorite band playing there. (As I’ve written here before, dance is one of my major ways to relieve stress!) My pager beeped and I saw it was my parents’ phone number. I immediately called Jeff at home and he willingly returned my Dad’s phone call, explained I was gone for the evening, and helped them in my absence. Thankfully, I didn’t have to turn around and leave the Happiest Place on Earth as soon as I had arrived. I know how lucky I am to have had such a reliable and caring backup person on my caregiving team.

Do you have a family member, friend or neighbor you can ask to be your back up for those times you just need to have some time away from caregiving? And don’t feel guilty arranging for this assistance!

I Never Lost my Patience . . . Yeah, Right (Part Two of Two)

Ironically, I would lose my patience on the telephone multiple times with my parents years before I ever became their family caregiver!

I moved out to California in my mid-20′s and we’d talk on the phone about once a week to catch up. I would find myself very upset or angry with my parents by the end of many conversations. I remember wishing they would just leave me alone and stop telling me what to do!

These negative emotions, along with some other issues, led me to get counseling for a few months to gain a better understanding of myself. My therapist taught me a very important life lesson which I know helped me become a more patient caregiver when I took on that role.

The lesson was for me to change my perception of what they said.

It was to recognize that the words my parents were actually saying, which I perceived as criticism or telling me how to run my life, were only one surface layer. What I needed to learn and embrace 100% was the understanding that beneath whatever “negative” words I was hearing, what my parents were really saying to me was, “We love you!”

They cared about and loved me deeply. They weren’t criticizing me; they were suggesting ways I could make my life even better. It was all in my perception of the intent behind their words, not what their words were! It was the unspoken message they were sending that I needed to focus on.

Once I learned this important lesson, it made all the difference in the world when communicating with them in a patient and loving manner, both long distance and while up close and personal. And I think this basic understanding also kept me from losing patience with them when I later shouldered the responsibility and stress of caregiving.

True Confessions are now officially over.

In a future post, we’ll talk about practical ways we can smooth things over when we do blow our cool with our Golden Oldies.

True Confessions: Have you Lost your Cool with your Aging Parents?

Linda Abbit — Mon, 18 Jan 2010 09:00:08 +0000

Last week’s post about having patience with our aging parents (aka Golden Oldies), caused me to think about the exact opposite experience. Despite our best efforts, each of us has probably lost our patience and blown up at our care recipients at one time or another, in some way or other. We wouldn’t be human if we didn’t.

My question to you is, “Then what?”

How did you handle repairing any hurt you may have caused by lashing out at someone you’re caring for and, most likely, care deeply about? What steps did you take to make things right? What did you do or not do? How did they react?

It’s true confessions time.

I promise to share my story in next week’s post, but you go first in the comment section below.

Do You Have Patience with Your Aging Parents?

Linda Abbit — Mon, 11 Jan 2010 09:00:13 +0000

Slow down, you move too fast.

You got to make the morning last.

Just kicking down the cobble stones.

Looking for fun and feelin’ groovy.

~ Paul Simon & Art Garfunkel

Lately I’m more aware than ever of how fast our society moves, and how we are living at an ever-accelerating pace. People want and expect instant action, access and/or results in so many realms of life!

We eat at fast food restaurants. We buy ready-made food at the market. We watch movies at home “on demand.” We drive 70 mph on freeways and pay tolls electronically via “FastTrack” devices. TV news broadcasts nearly always start with “Breaking News.” At Disneyland, the “happiest place on earth,” we purchase a “Fast Pass” to avoid waiting in long lines. Immediacy and speed define our world.

We can be reached by phone, whether home or away — and now even in foreign countries. Cell phones allow us to be forever connected . . . and the people who are calling us are asking for a fast response back. If they reach an answering machine at our home or office, instead of leaving a message, they’ll call our cell phone — if they even called our land line to begin with. And if leaving a phone message won’t suffice, they’ll then attempt to reach us by text, email, or Facebook chat — thanks to iPhones, Blackberries and other PDA’s. Immediate connections rule.

I fear as a society we are losing an important character trait called “patience.”

In business the same frenetic rules apply. People have learned many companies are reachable 24/7 thanks to the internet, and customers expect answers to their questions or problems as soon as possible. A business person recently told me they answer all customer queries within 24 hours — and this is in an industry that is not “life or death” by any means!

As these business owners stay in constant contact with their customers, they are thereby training these customers to expect instant replies from other businesses as well, and not to be satisfied if they don’t get them. An ever-increasing cycle of higher expectations and faster responses grows.

How does all of this relate to being a family caregiver?

As caregivers we need to realize our aging parents (aka Golden Oldies) don’t live in a world ruled by this accelerated pace of life. While they may use computers or cell phones (although many don’t), they aren’t tied to them, and the instant gratification gained by using technology, in the same way baby boomers, Gen X, Gen Y and the millenial generations are.

As family caregivers, we need to be mindful of this and adjust accordingly when caring for or even just visiting our aging parents. We must embrace the character trait of patience when we’re with them, caring for them and during our interactions with them. It is necessary to shift into a lower gear when entering their world. It is unkind, and creates tension in our relationships with them, if we try to force them to function in our much faster moving world.

It really won’t be harmful to our health to slow down for a day, or even for just a few hours, when spending quality time with them. Enjoy slipping into their world — where you can still find phones with cords, analog clocks, an AM/FM radio and TV’s that are large boxes that don’t hang on the living room wall. Shut your cell phone off for a few hours when you’re together and enjoy the peace it affords.

Don’t expect your aging parents to move at a fast pace, eat quickly, or even think as fast as we have become accustomed to doing. We need to s-l-o-w down and embrace the easier, more gentle pace they live in when we’re around them. It gives us caregivers time to “stop and smell the roses.” Yes, the amount of time we spend with them is important, but also how we spend that time together also counts.

Nike’s “Just Do It” slogan doesn’t cut it by Golden Oldie standards. For their generation this is what mattered: taking the time to make a decision, weighing the options, figuring out the best, most efficient and probably the most economical way to accomplish something. Despite the fast-paced lives we lead, a slow and deliberate approach is still a good alternative to just doing it.

“We say we waste time, but that is impossible. We waste ourselves.”

~ Alice Bloch

Embrace the opportunity to relax and decompress with your Golden Oldies — don’t avoid it. They give you the time and space to do so when you’re with them — they are experts at it, so learn from them. It gives you time to re-charge your batteries before heading back out into the ever-accelerating, fast-paced world we live in.

And whatever you do, don’t make them speed up — ain’t gonna happen! Meet them in their world, appreciate and honor it.

You must have been warned against letting the golden hours slip by; but some of them are golden only because we let them slip by.

~ James Matthew Barrie

I’d love to get your thoughts on having patience in the comment section below. For starters, do you or don’t you?

Hospice Care, Part 4: Mom’s Hospice Experience

Linda Abbit — Mon, 19 Oct 2009 09:00:30 +0000

This article is Part 4 in a series on hospice care. Please see the section below entitled “Related Posts” for links to Parts 1, 2, and 3 and to read more on this topic.

First Time Around It Was “No Go”

I was impressed with the way my dad’s final months were made more comfortable physically and emotionally via hospice care, as well as by the support I received from them. I wanted my mother to receive this same comfort care. She was already in the middle stages of Alzheimer’s disease when my dad passed away, and I knew I really didn’t want to subject her to any more hospital stays in her lifetime, so placing her on hospice care was the answer for me.

I asked the hospice company to assess her, assuming they’d admit her to their service. Wrong! The hospice company told me she didn’t meet the strict criteria for admittance as a patient. In one way I was glad that she didn’t qualify for hospice but, on the other hand, I was somewhat surprised and let down. While disappointed, I learned their parameters, and also knew it was only going to be a matter of time before she would meet the criteria. And in April of 2007, she did.

A Different Experience Due to Length of Time on Hospice

The difference between my mom’s and dad’s hospice experiences was due for the most part to the length of time they each received hospice care. It was provided by the same hospice company, but my father was on hospice less than six months, while my mother was on hospice for approximately two years.

As a result of her extended time on hospice and her continuing decline, she utilized these additional services:

The hospice company provided more medical equipment for my mom: a hospital bed with an alternating pressure air mattress, a wheelchair, incontinence supplies, and a medical hoist to help the caregivers lift her from her bed to wheelchair and back again.

The hospice company consulted with wound care specialists several times who assessed and suggested alternative treatments for the bedsores that appeared despite the excellent care she received. (Yes, bedsores can develop even when patients are very well-cared for. Read more about this subject here.)

A dedicated hospice volunteer visited my mom once a week and helped my mom participate in arts & crafts or music as much as she could, read books to her, talked with her (even though it was pretty one-sided due to mom’s aphasia), brought flowers and little gifts, and just kept her company if she was sleeping. These “quality time” visits were greatly appreciated by me, since I couldn’t be there every day. The volunteer also got to know our whole family and we still are in touch months after my mom passed away.

When my mom experienced her first ever tonic-clonic seizure, continuous care was provided by hospice for about the next 48 hours. This means hospice staffers gave her intense around-the-clock care until she returned to “normal.” This was only offered by hospice as a short term level of care and reevaluated each day, because it is also based on strict Medicare guidelines.

Caregivers vs. Hospice Staff in “Territorial Wars”

An interesting thing occurred during the treatment of my mom’s bedsores. The board & care caregivers and the hospice RN’s pointed fingers at each other a few times, insinuating that it was the others’ fault that my mom’s bedsores weren’t healing quickly enough. The caregivers felt the RN’s needed to provide more frequent wound care; while the hospice RN’s felt that the in-home caregivers didn’t turn or reposition my mom often enough since she was bedridden. It was subtle verbal warfare that I heard both sides of. Although it didn’t became a big brouhaha, and never went further than a few words spoken privately to me on occasion.

It’s important the staff of the board & care and the hospice nurses easily co-exist and communicate well with each other. And they should not get into “territorial” wars over who the patient is getting “better” care from. I knew they all wanted what was best for my mom, but they needed to stay focused on that and not start pointing fingers out of their frustrations over the bedsores.

If you notice this phenomena occurring during your loved one’s care and it’s getting to be more than you want to deal with, contact the hospice team manager and/or board & care administrator and let them get it ironed out. With mom’s medical condition I believe her bedsores were lingering for any number of reasons, and I never blamed the caregivers nthe RN’s. All of us were a “village” providing the best care possible for my mom. Your family could find themselves in the middle of staff turf wars, too, over various caregiving issues, so please be aware.

More Lessons Learned from The Two Hospice Experiences

As I wrote previously, I might have interviewed other hospice companies if I had known in the beginning there were different types to choose from. Some time after the first year of my mom’s hospice experience, I decided to interview a smaller “mom and pop” type of hospice company a close friend (who is also an RN) recommended. One benefit was that the nurses’ caseloads with that company were smaller, so their patients theoretically could receive more frequent or longer visits. This benefit appealed to me and I thought over the pro’s and con’s of each company for several weeks.

I decided to stay with our original hospice company. I didn’t want to invest the additional time and energy it would take for a whole new team of hospice workers to get to know and initiate care for my mom. I realized no hospice company is perfect and it just didn’t seem worth it to make a change at that point. It turns out this decision to keep the status quo was just a few months before my mom died, and that fact made it an even better decision in hindsight.

Every hospice patient and their family’s experience depends greatly on the individuals on the hospice staff. Although the doctors, RN’s, social workers and home health aides that cared for my parents were all employed by the same company and therefore had the same goals and philosophy, they each brought their own personality and style to the job. These can vary greatly and the patient’s family should be sure the staff’s style of communicating and caregiving match what you perceive your care recipient’s and your family’s needs are.

For example, the social worker assigned to my dad’s case was a treasure. As I wrote in a prior post, she met me in person at the board & care several times and checked in by phone with me regularly to offer support to us on a continuing basis. When my mom was admitted to hospice two years later, I was pleased to learn the same social worker was assigned to her case. Later on she left the hospice company and the new hospice social worker approached her job very differently.

This new social worker never called to introduce herself nor made any contact with our family until I called the hospice company with a question that fell under her bailiwick. She then promptly met me at my mom’s board & care and provided the needed information, but the “connection” and compassion I felt immediately from the prior social worker was missing. Yes, she technically fulfilled her job duties by efficiently responding to my query, but that was it. She seemed harried and her demeanor just wasn’t a good fit with mine. If I needed more help from the social worker, I would have requested someone else on the hospice staff. Like any paid service, we as consumers have the right to ask that our basic needs be met.

I recommend patients and their families be open to the concept of hospice care. It is a scary word associated with death and hard to face, but it provides a positive end-of-life option. Learn about it. Interview local hospice companies before making a decision on which one to use. Talk with your aging parents about their end-of-life thoughts, plans and desires. Educate your whole family about this phase of life and how hospice can help manage so many facets of it.

I feel very fortunate that both of my parents were able to die with no pain, peacefully and with dignity. I wish everyone could leave this world in that way. Don’t you?

If you or your loved ones have had experience with hospice care, please share with us in the comment section below.

And check back soon for more articles in this series.