Blog Library

Sharing my Experiences as a Caregiver

Began MSCaregiverSharing Blog in 2011

     I started writing about being a caregiver in 2011. Over the years, I shared many heart-felt, emotional descriptions of the challenges I encountered as a spouse caregiver, and the blessings I received. I decided to share those blog archives with you because I believe they provide insight into the emotional adjustment that occurs as someone becomes a caregiver. As I shared my journey, I held nothing back; therefore, the stories provide a first-hand view of how I felt in those moments-warts and all.

 

Hardest Job I Ever Had

      I hope my experiences encourage you to keep putting one foot in front of the other each day. Yes, being a caregiver is the hardest job I’ve ever had, but by taking life one day at a time and trying not to look any further than the day I’m currently living, I’m making it.

 

 

God in Control – Always

      I know God is still in control of my life, and He’s got my back. He helps me through all the struggles and gives us both the strength we need to endure. Though He doesn’t take away our challenges, He faithfully provides for our needs each time. Lynn is in good health for a disabled, chronically ill person, and we’re each other’s best friends. So, you see, this family caregiving thing can succeed.

Mike getting into position to baptize Lynn

Baptizing Someone Immobile

Baptizing Someone Immobile At Home What’s the Process to Baptism Someone Immobile at Home? Last year, my husband asked me to help him arrange a baptism ceremony at our home.  Though baptized as a child, he wanted to supplement his childhood understanding with a reaffirmation of adult faith. Lynn has

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A Lifetime of Family Caregiving

Caregivers never take a break because though they may not be physically present, mentally, they do not let go of their responsibilities. Relaxation is extremely difficult for a lifetime family caregiver because being “on” and ready to respond in an instant is a part of their innermost being. They do not have an off switch.

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Many children take on the role of caregiver when parents become sick even when they are very young themselves.

Children As Caregivers

Children as Caregivers Since multiple sclerosis often strikes in early adulthood, many times, the family unit includes children who mature into adulthood, watching their parents become progressively weakened by the disease. Such was the case in our family. Lynn had a ten-year-old son who lived with his ex-wife when we married in 1997.

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Sharing Germs

I’ve been struggling since December 26 with being both the caregiver and needing care myself. I don’t usually get sick because I’m cautious regarding exposure to contagious situations. For example, I screen those who come to our home both for their symptoms and their possible exposure to others, and I do

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Times Have Changed

Once upon a time, the world was a different place in America. Sons and daughters grew up and married and lived in or close to the same neighborhoods where their parents, aunts, uncles, and grandparents lived. Neighbors knew neighbors. Couples got together with friends on Saturday night, and children grew

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Delirium and UTI’s – What’s The Connection?

Did you know that delirium was a symptom of a urinary tract infection? Neither did I, but it’s something I’m learning to recognize. Apparently, I’m not the only one who has experienced its impact because there was an article on the phenomenon in one of my nursing magazines last month. My

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Hats Off to Special Needs Parents

Hats Off to Special Needs Parents I want to shout out today to special-needs parents.  God bless them; they have their hands full, and their energy tanks empty most of the time. These caregivers play a dual role as both parent and caregiver.   In that role, they are often criticized

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Caregivers learn to do health assessments.

Training Needed for Caregivers

Since I’ve retired, I’ve found myself on a mission to do something about the plight of caregivers. Why am I so stirred up? It’s because there is a severe lack of training for family caregivers. The lack of training is especially true in rural areas where families are expected to perform

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Watch for Breaks in Skin

My current project is gathering information to write a book on skincare and wound management. Therefore, wound and skincare are on my mind. One of the most important practices I have is to check my husband’s skin regularly for any signs of skin breakdown. If I see the first hint

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Something Has to be Done

Today, or maybe yesterday, is the official launch of my website. I launched it by creating a Facebook page to start getting the word out about Becoming A Family CaregiverA person who provides needed help to someone of any age who is ill or injured and unable to care for

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No Time to Care

Caregiving is a very lonely responsibility. If you have ever been a caregiver, you understand what I mean. All caregivers have probably experienced that feeling of being alone when the smoke clears. The initial burst of enthusiastic help is over. Everyone has returned to their normal lives except you. As the dust settles

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Lynn’s Story

Lynn’s story began when he was a young teen.  His father, who was a carpenter, experienced difficulty walking.  His diagnosis of multiple sclerosis came soon afterward. His life and that of his family changed dramatically with his diagnosis because at that time no treatments were available for MS.  Lynn remembers

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Our Story

Hi, my name is Donna. I’m the wife of a Multiple Sclerosis patient, Lynn, diagnosed in 2006. MSCaregiverSharing, my original blog site, was dedicated to telling the story of how I adapted to being both a caregiver and spouse to someone with multiple sclerosis. As part of that story; however, the

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My Caregiving Journey

BLOG LIBRARY MY CAREGIVING JOURNEY I first became a caregiver raising a child with special needs. That marriage became a statistic of caregiving marriages and ended in divorce.  I remarried a few years later to a man supportive of my role of caregiver. It was ironic in a way because,

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Specialization of Medicine – Is that a Good Thing?

I am concerned that the specialization of medicine is leading to a decrease in the quality of care available rather than an increase. I have seen this more and more over the past several months as my husband has had a series of mystifying medical conditions requiring different “specialties” to determine the underlying cause.

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Were You Prepared to Become A Caregiver?

How prepared were you when you first became a caregiver?
Did you Know what todo, where to go, what the medical terms being used even meant?
Did you know how and when to switch between the role of spouse/child/sibling/friend/parent/partner and caregiver?
If you are like most caregivers, you probably didn’t. Most of us didn’t plan on becoming caregivers. We acquired the role because “something” happened to someone we cared about or had the responsibility to protect. We did not apply for the job. It did not matter if we had prior training, had any competency or skill in knowing what to do. In some cases, it didn’t even matter if we wanted to do the job since we were obligated under a court-appointed mandate. We had the responsibility to be the caregiver, training or not, to care for and protect, this person placed under our responsibility. How could someone help but feel overwhelmed and uncertain in that situation?

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Hey Sweetie! Can you Come Here a Second?

How many times a day does your MS patient call you for help?  If I have slept the night before I tolerate it pretty well.  If I haven’t, then I do a lot of mumbling when I get the “call.”  I admit I get frustrated a lot. I have to remind him often that I’m at work and need to get back to my desk.  The interruptions cause me to regularly work till after 9 pm trying to get in a full day.  I’m very fortunate that I have that flexibility.  I’m sure many of you do not.  My heart goes out to you because it’s a terrible conflict to have to decide which need to serve–caring for your spouse or bringing in the money to care for you both.  The reality is you have to work to eat, but it’s hard to manage it all.

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Fear of the Future

Ever since Lynn almost had to go on a ventilator in May, in the back of my mind I wonder what to expect about the future.  I seriously try to just look at what today holds for me but whenever plans need to be made, I can’t help but worry.  I can’t share this with Lynn.  If I do he thinks I’m being pessimistic and that I don’t think things will turn out well. It makes him depressed because he thinks I think he’s not going to get any better… so I can’t talk to him about my fears…but they are there.

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Could MS Be a Blessing?

First off let me say that I would not wish MS on anyone.  Nor do I believe that God gives people MS either as a blessing or a curse; MS, like all diseases, is a consequence of a fallen world and Adam and Eve’s free choice to disobey God.  That said, I believe God can use the hard times in our lives to strengthen and bless us.

I must admit that I don’t particularly appreciate it when someone tells me that “God doesn’t give us anything we can’t handle.”  Most of the time, I want to respond that His idea of what I can handle and mine are world’s apart, but I have to admit that for the most part, that saying is true.  Or maybe it’s not.  What I have found is that God doesn’t expect me to handle it alone. 

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Blog Library List of Titles

 Table of Contents
20119/11 Remembered
 Adjusting to being less than the best
 Answer to Prayer
 Being diagnosed
 Can he not remember or is he just not paying attention?
 Christmas Eve
 Christmas with Family
 Comfort in the face of the earthquake
 Disappointments and Guilt
 Family Gatherings
 Ferritin Deficiency
 Happy Anniversary
 Hayek Ventilator
 Helping with Lynn’s Career
 I have the blues today
 I Just Can’t Deal With Another Thing.
 I so want a wheelchair van!
 Like father like son
 Lord, please…
 Love/Hate Relationship with the Night
 MS or something else?
 My back hurts…
 Necessity is the Mother of Invention
 Perseverance
 Plasmapheresis
 Please participate in this survey related to Caregiver Needs
 Please take the flu shot
 Shower Day
 Starting Down the MS Road
 Stiff as a Board?
 Switching Gears
 Thanksgiving
 The world still doesn’t understand disabilities
 Things are improving…
 Triumphs and Disappointments
 Vacationing with MS
 We can finally drive the van!
 We have MS
 We Have Our Van!
 Weathering the storm
 What a day!
 What a week….
 Who Has It Worse?
 Whose life is he living?
 Whose life is this I’m living?
 Wondering where this road will go
  
2012 
 911-Do you do catheters?
 “I Know Someone With MS…”
 “Cut! Take Two…”
 Depression
 Financial Support for Home Care
 Free to a Good Home…with patience
 God’s Blessings
 Going Out Isn’t Easy
 Going to the Movies
 Grieving over things lost
 Group Conference Call
 Guest Blog
 Hope you Enjoyed Thanksgiving
 Hygiene and Grooming – Sweating the Small Stuff
 I Don’t Know What I Don’t Know
 I DON’T WANT TO BE A MAN!
 Information from WeGO Health community
 Just Say “No”?
 Keeping up with the Paper Work
 Live in the Moment
 Multitasking
 National Family Caregivers Month – Background
 Oh, no. Is that a skin tear?
 Pass It On
 Patient Advocate
 Quiet Time
 Reaching my Saturation Point – at least today
  
 Rush to RUSH
 Short Trip but Major Planning
 So Many Choices
 Sometimes I Feel Like I will Explode
 Supporting Lynn in his Work
 The Blessings of Children
 The Healing Touch of a Baby’s Smile
 The Secret Life of a Caregiver
 There are Worse Things Than MS
 There Go the Apples!
 They’re Married and Lynn was There for it All
 Time or Just One Continuous Move Forward?
 Transition
  
  
  
 Warning! I have a Cold!
 Was That a Vacation?
 What do I do Now?
 Whom Do I Choose?
 Why is Getting Help so Hard to do?
 Working from Home
  
2013A Little to the Left Please
 Accepting What You Grow Up With
 Adjusting to Disappointment
 All He Can Do Is Yell
 Audiobook…Take Me Away
 Awesome News, Patrick!
 Call If You Need Anything
 Caregiver or Mom?
 Cheesecake Makes it All Worthwhile
 Choices and Calculated Risk
 Divine Intervention?
 Fear of the Future
 Follow Me on WWW.Multiplesclerosis.net
 Happy Birthday to Me!
 Has Anyone Seen My Magic Wand?
 Hold My Hand
 How am I Thankful? Let Me Count the Ways
 I Didn’t Say That
 I’ll Miss You, Patrick
 Just Sharing
 Life’s Precious Balance
 Loss of Intimacy?
 Now This is What I Call Accessible
 Planning, Time, and Flexibility: Essential Ingredients for the Holidays
 Protecting Our Home
 Radical Mobility Lets Us Down Yet Again
 Second Generation Caregiver
 See Me Through His Eyes
 So This is What a Day of Freedom Feels Like
 Take Care of Myself? LOL
 The Best Laid Plans…Oh, Forget It
 The Caregiver’s Prayer by Kelly Combs
 The View From Up Here
 Thinking of Buying 4WD Wheelchair? Don’t Buy from Radical Mobility!
 Thus the Week Before Christmas
 Trying to be All Things at All Times
 Update on Ongoing 4WD Wheelchair
 Wanted: Caregiver Ten Hours a Day
 What Do You Feel Guilty About?
 What is a Caregiver?
 When is a Nurse Not a Nurse? When she’s a Family Caregiver.
 When Is This Going to go Away?
 Which Half of the Glass Am I Today?
 Who Am I?
  
  
  
2014A Short Trip Back Home
 Arsenic, Mercury, and Lead – What do They Have to Do with MS?
 Batten Down the Hatches! Snow is Coming
 Buying Health
 Can You Scratch My Leg?
 Caregiving and Work
 Finding Time for Normal
 Guest Blog – Seeing Through the Woulds by Dan Digmann
 Handling Grief
 How FMLA Supports Caregiving
 How Others See Me
 I Like Ours Better
 I’m the Primary Healthcare Provider
 Is That Your Final Answer?
 Is There Really Anything to Being On An MS Diet? We Think so
 Is This It? I Thought It Would Be Bigger
 I’ve Felt Worse
 Just Because It Can Be Done Doesn’t Mean It Should Be
 Lessons Learned From a Short Trip
 Life Lessons from Caregiving
 Living the Loss
 Managing Caregiver Chaos
 Marriage?
 Moment by Moment
 My Role as a Physical Therapist
 One Minute He’s Hot; the Next He’s Cold
 Preparing for the Week Ahead
 Put Guilt Back in the Box
 Second-Hand MS
 So, How Are You….Really?
 Sometimes I Get Jealous
 Sometimes, Ya Just Have Ta Laugh….
 Thankful for MS?
 Thankful to Be a Caregiver
 The Challenges of Separation Anxiety
 The Impact of Caregiving on the Caregiver
 The Importance of Skin Care
 The Need to Feel Productive
 We Love To See You But….
 What Happens When It’s My Turn?
 What’s a Ratchet?
 When Reality and Dreams Don’t Mix, No One Wins
 Who Can Afford Respite Care?
 Would Hydrotherapy Be an Option?
 “You’ve Got This” Campaign
  
2015Am I Competent to Do This Job?
 Can You Come Here a Minute?
 Caregiving From a Different Perspective
 Character Flaws
 Commitment
 Connecting with Grandchildren
 Dealing with Loss
 Finding the Will to Live
 Frustrations of Dealing with Limitations
 Giving the Gift of Receiving
 Helping Him Get Comfortable in Bed
 Home Alone
 How Can I Help?
 I’m Thankful to God That Jesus Didn’t Quit
 Independence Battles Protection
 Joy Comes in the Morning
 Letting Go of Unrealistic Plans
 My Mom’s Words are Still True Today
 Pathway to Power (Chair)
 Planning for the Future with Our Children
 Rules of Engagement
 Spring Into Action
 Stages of Caregiving
 Stages of Grief: Anger
 Stages of Loss: Acceptance
 Standing Beside His Bed
 Struggles with Skin Care
 Take Care of Myself?
 Tested By Fire
 The Many Faces of Care
 Watching, Waiting, Being Strong
 What Do you See When You See Me?
  
2016Blessings from Pain
 Confessions of a Stressed-Out Caregiver
 Did You Miss Me?
 Feeling Alone or Maybe Just Left Out
 Give Me a Hand
 Helpful Resources for Supplies, Equipment or Information
 I Can’t Just Get Sick
 I Just Keep Going and Going and Going
 I’m No Angel
 It’s Snowing
 Lack of Sleep. The Root of All Evil?
 Realities of Life
 Something New to Deal With
 Waiting for the Next Shoe to Drop
 We Survived Christmas, But Just Barely
 What Goes In Must Come Out
 What Resources are Available if I’m Not Around Anymore?
  
  
2017-18An Essential Member of the Healthcare Team
 Can You Speak?
 Holiday Preparations
 Retirement to the Rescue
 Something’s Different. Something’s Not Right. Listen to Me.
 Sorry I Haven’t Been Able to Write Lately
  
2019A Lifetime of Family Caregiving
 Children As Caregivers
 Sharing Germs
 Times Have Changed
 Could MS Be a Blessing?
 Delirium and UTI’s – What’s The Connection?
 Hats Off to Special Needs Parents
 Help with Difficult Conversations
 Hey Sweetie! Can you Come Here a Second?
 Hope or Regret: The 4-Wheel Drive Powerchair Debate
 Impact of Caregiving on Employment
 Mental Health Caregiving
 MY INVISIBLE MS: SUPPORT FOR CAREGIVERS
 New Mysteries All the Time
 No Time to Care
 Prepare to Become a Caregiver
 Reflections on Caregiving
 Remember Whose Life You Are Living
 Right to Decide
 Something Has to be Done
 Specialization of Medicine – Is that a Good Thing?
 Training Needed for Caregivers
 Understanding How FMLA Can Help
 Understanding Immunosuppression
 Unexpected Sadness
 Watch for Breaks in Skin
 Were You Prepared to Become A Caregiver?
  
  
  
2020A Lifetime of Family Caregiving
 Children As Caregivers
 Sharing Germs
 Times Have Changed
  
  
  
  
  
  
  
  
  
  
  
  
 
“Cut! Take Two…”
“I Know Someone With MS…”
9/11 Remembered
911-Do you do catheters?
A Lifetime of Family Caregiving
A Little to the Left Please
A Short Trip Back Home
Accepting What You Grow Up With
Adjusting to being less than the best
Adjusting to Disappointment
All He Can Do Is Yell
Am I Competent to Do This Job?
An Essential Member of the Healthcare Team
Answer to Prayer
Arsenic, Mercury, and Lead – What do They Have to Do with MS?
Audiobook…Take Me Away
Awesome News, Patrick!
Baptizing Someone Immobile
Batten Down the Hatches! Snow is Coming
Being diagnosed
Blessings from Pain
Buying Health
Call If You Need Anything
Can he not remember or is he just not paying attention?
Can You Come Here a Minute?
Can You Scratch My Leg?
Can You Speak?
Caregiver or Mom?
Caregiving and Work
Caregiving From a Different Perspective
Character Flaws
Cheesecake Makes it All Worthwhile
Children As Caregivers
Choices and Calculated Risk
Christmas Eve
Christmas with Family
Comfort in the face of the earthquake
Commitment
Confessions of a Stressed-Out Caregiver
Connecting with Grandchildren
Could MS Be a Blessing?
Dealing with Loss
Delirium and UTI’s – What’s The Connection?
Depression
Did You Miss Me?
Disappointments and Guilt
Divine Intervention?
Family Gatherings
Fear of the Future
Feeling Alone or Maybe Just Left Out
Ferritin Deficiency
Financial Support for Home Care
Finding the Will to Live
Finding Time for Normal
Follow Me on WWW.Multiplesclerosis.net
Free to a Good Home…with patience
Frustrations of Dealing with Limitations
Give Me a Hand
Giving the Gift of Receiving
God’s Blessings
Going Out Isn’t Easy
Going to the Movies
Grieving over things lost
Guest Blog
Guest Blog – Seeing Through the Woulds by Dan Digmann
Handling Grief
Happy Anniversary
Happy Birthday to Me!
Has Anyone Seen My Magic Wand?
Hats Off to Special Needs Parents
Hayek Ventilator
Help with Difficult Conversations
Helpful Resources for Supplies, Equipment or Information
Helping Him Get Comfortable in Bed
Helping with Lynn’s Career
Hey Sweetie! Can you Come Here a Second?
Hold My Hand
Holiday Preparations
Home Alone
Hope or Regret: The 4-Wheel Drive Powerchair Debate
Hope you Enjoyed Thanksgiving
How am I Thankful? Let Me Count the Ways
How Can I Help?
How FMLA Supports Caregiving
How Others See Me
Hygiene and Grooming – Sweating the Small Stuff
I Can’t Just Get Sick
I Didn’t Say That
I Don’t Know What I Don’t Know
I DON’T WANT TO BE A MAN!
I have the blues today
I Just Can’t Deal With Another Thing.
I Just Keep Going and Going and Going
I Like Ours Better
I so want a wheelchair van!
I’m No Angel
I’m Thankful to God That Jesus Didn’t Quit
I’ll Miss You, Patrick
I’m the Primary Healthcare Provider
Impact of Caregiving on Employment
Independence Battles Protection
Information from WeGO Health community
Is That Your Final Answer?
Is There Really Anything to Being On An MS Diet? We Think so
Is This It? I Thought It Would Be Bigger
It’s Snowing
I’ve Felt Worse
Joy Comes in the Morning
Just Because It Can Be Done Doesn’t Mean It Should Be
Just Say “No”?
Just Sharing
Keeping up with the Paper Work
Lack of Sleep. The Root of All Evil?
Lessons Learned From a Short Trip
Letting Go of Unrealistic Plans
Life Lessons from Caregiving
Life’s Precious Balance
Like father like son
Live in the Moment
Living the Loss
Lord, please…
Loss of Intimacy?
Love/Hate Relationship with the Night
Managing Caregiver Chaos
Marriage?
Mental Health Caregiving
Moment by Moment
MS or something else?
Multitasking
My back hurts…
MY INVISIBLE MS: SUPPORT FOR CAREGIVERS
My Mom’s Words are Still True Today
My Role as a Physical Therapist
National Family Caregivers Month – Background
Necessity is the Mother of Invention
New Mysteries All the Time
No Time to Care
Now That You’re Out of Quarantine, Don’t Forget Those Left Behind
Now This is What I Call Accessible
Oh, no. Is that a skin tear?
One Minute He’s Hot; the Next He’s Cold
Pass It On
Pathway to Power (Chair)
Patient Advocate
Perseverance
Planning for the Future with Our Children
Planning, Time, and Flexibility: Essential Ingredients for the Holidays
Plasmapheresis
Please take the flu shot
Prepare to Become a Caregiver
Preparing for the Week Ahead
Protecting Our Home
Put Guilt Back in the Box
Quiet Time
Radical Mobility Lets Us Down Yet Again
Reaching my Saturation Point – at least today
Realities of Life
Reflections on Caregiving
Remember Whose Life You Are Living
Retirement to the Rescue
Right to Decide
Rules of Engagement
Rush to RUSH
Second Generation Caregiver
Second-Hand MS
See Me Through His Eyes
Sharing Germs
Short Trip but Major Planning
Shower Day
So Many Choices
So This is What a Day of Freedom Feels Like
So, How Are You….Really?
Something Has to be Done
Something New to Deal With
Something’s Different. Something’s Not Right. Listen to Me.
Sometimes I Feel Like I will Explode
Sometimes I Get Jealous
Sometimes, Ya Just Have Ta Laugh….
Sorry I Haven’t Been Able to Write Lately
Specialization of Medicine – Is that a Good Thing?
Spring Into Action
Stages of Caregiving
Stages of Grief: Anger
Stages of Loss: Acceptance
Standing Beside His Bed
Starting Down the MS Road
Stiff as a Board?
Struggles with Skin Care
Supporting Lynn in his Work
Switching Gears
Take Care of Myself?
Take Care of Myself? LOL
Tested By Fire
Thankful for MS?
Thankful to Be a Caregiver
Thanksgiving
The Best Laid Plans…Oh, Forget It
The Blessings of Children
The Caregiver’s Prayer by Kelly Combs
The Challenges of Separation Anxiety
The Healing Touch of a Baby’s Smile
The Impact of Caregiving on the Caregiver
The Importance of Skin Care
The Many Faces of Care
The Need to Feel Productive
The Secret Life of a Caregiver
The View From Up Here
The world still doesn’t understand disabilities
There are Worse Things Than MS
There Go the Apples!
They’re Married and Lynn was There for it All
Things are improving…
Thinking of Buying 4WD Wheelchair? Don’t Buy from Radical Mobility!
Thus the Week Before Christmas
Time or Just One Continuous Move Forward?
Times Have Changed
Training Needed for Caregivers
Transition
Triumphs and Disappointments
Trying to be All Things at All Times
Understanding How FMLA Can Help
Understanding Immunosuppression
Unexpected Sadness
Update on Ongoing 4WD Wheelchair
Vacationing with MS
Waiting for the Next Shoe to Drop
Wanted: Caregiver Ten Hours a Day
Warning! I have a Cold!
Was That a Vacation?
Watch for Breaks in Skin
Watching, Waiting, Being Strong
We can finally drive the van!
We have MS
We Have Our Van!
We Love To See You But….
We Survived Christmas, But Just Barely
Weathering the storm
Were You Prepared to Become A Caregiver?
What a day!
What a week….
What do I do Now?
What Do You Feel Guilty About?
What Do you See When You See Me?
What Goes In Must Come Out
What Happens When It’s My Turn?
What is a Caregiver?
What Resources are Available if I’m Not Around Anymore?
What’s a Ratchet?
When is a Nurse Not a Nurse? When she’s a Family Caregiver.
When Is This Going to go Away?
When Reality and Dreams Don’t Mix, No One Wins
Which Half of the Glass Am I Today?
Who Am I?
Who Can Afford Respite Care?
Who Has It Worse?
Whom Do I Choose?
Whose life is he living?
Whose life is this I’m living?
Why is Getting Help so Hard to do?
Wondering where this road will go
Working from Home
Would Hydrotherapy Be an Option?
 
 
 
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