Plans to Be All-Things-To-All People

For the past two years, I diligently worked to create a website to support caregivers. Initially, I planned to have an elaborate website that was all-things-to-all-people, i.e., a caregiver’s dream come true. For months, I learned all sorts of things about website design and other computer necessities. I made lots of mistakes, started over repeatedly, cried in frustration, fussed way too much, and talked to myself a lot. Finally, I stood back in satisfaction, deciding that I had enough to introduce the project to caregivers.

Is All-Things-To-All-People Too Much to Handle?

Though a challenge to my skills, over the two years, I completed a welcome section, orientation to caregiving, caregiving emotional impact, community forums/chat rooms/ blogs, marketplace, a resource center, and a question/answer section where members could contact me for information and assistance on topics of interest or concern to caregiving. The website covered most of the crucial topics I wanted to provide, but I wasn’t sure if that would be enough to ensure all caregivers were covered.

Filled with Self-Doubt

I felt compelled to work on it as often as I could, seeking new information and resources all the time.  I spent every spare minute sitting at my computer researching information, all the while feeling like I was letting someone down that needed my help.  Then I began to doubt my ability to keep up with the ongoing needs of those who might need the resources I wanted to provide.  Would I be able to respond to their requests promptly? What would happen if Lynn became hospitalized or I became sick? Would I have anyone to take over? I quickly discovered that fear could take over my mind and destroy my ministry if I could not guard against self-doubt. To keep moving forward, I have to remind myself to regularly pray for strength and courage.

Caregivers Have Limited Time for Extra-Curricular Activities

I used to feel that I could do almost anything I needed to do.  I had a lot of self-confidence at one point in my life – “Give me a problem, and I would find a way to solve it” was my motto. However, that changed after becoming a full-time caregiver and tried balancing work, family, and home.  Carrying the weight of being “all-things-to-all-people” came with a price. It often meant making a lot of personal sacrifices in spending long hours single-handedly solving problems. I lost friendships, the respect of people with whom I worked, lack of understanding by many who saw me as distant and unfriendly rather than exhausted with no time to interact.

Struggle with Time Management

As a caregiver, I continue to struggle and have difficulty managing time. I have limited time for project work.  Deciding to work late into the night means my husband doesn’t eat dinner or take medication on time, and he goes to bed late. Furthermore, I get less than my usual five hours of sleep.  Having experienced the impact of going through the day with only four hours of sleep or less many times in the past, I try to avoid repeating that experience when possible. Therefore, being “all-things-to-all-people doesn’t work well for me for extended periods of time though I’ve been trying to do it for over ten years now.

Reality Strikes

In looking over my first version of my website, I realized that once again, somewhere along the way, the desires of my heart silenced reality, and I tried to create a website that would be all-things-to-all-people. Upon making that realization, I felt incompetent and wanted to quit. What was I thinking? Most weeks, I could spend no more than 15-20 hours working on the site. The rest of the time, I needed to be a caregiver.  Furthermore, building the site was costly. I could not afford to keep up with the ongoing renewals and upgrades. Everything seemed to be pointing toward me letting go and taking down the website; however, God had different ideas.

God Is In Control

I heard a little voice inside telling me, “No. Don’t give up, but don’t take on the world either.” God was not expecting me to be all-things-to-all-people. He was just asking me to do my best. I started over. Instead of providing everything I thought caregivers needed, I focused on what I thought new caregivers needed most. When I first became a caregiver, I needed help knowing how to manage caring for someone in the home because bedroom furniture doesn’t work like hospital equipment. Family caregivers don’t have medical equipment readily available to help them do what they need to do. Therefore, family caregivers need help learning how to safely and efficiently do things in the home that will not hurt them or their family member.

Changed Focus

Having acquired that insight, I changed my focus to finding new resources, adapting hospital procedures to work in the home, and writing about reorganizing a home to work for medical needs. I thought about what went wrong when Lynn came home from the hospital and which issues frustrated me the most about dealing with the healthcare systems. From those memories, I pulled together my ideas for my website.  I also incorporated feedback from my two daughters, who each have special needs children who regularly deal with the healthcare community.  Between the three of us, we have a wealth of knowledge about what works and what doesn’t, what’s needed, and where to get it.

Stepping Out In Faith

I’m still afraid to launch this website. Afraid my caregiver duties will interfere with being able to keep up with the demands of the website.  Some weeks Lynn needs me all the time; other weeks, not as much. I know in my heart some caregivers need this information. I also feel that God will help me reach those who need it.  However, even though I am afraid, I will step out in faith to launch this website.  I will also try to remember that God does not expect me to be all-thing-to-all-people.  He only expects me to do my best for him.  As long as I’m working for God and doing His will, this is His mission, and He will run interference for me.  So, bear with me if I’m slow to get back to you or if you find mistakes. I promise to do my best, and I know God will be faithful.

Caregiver Discrimination

Equal Treatment

     For several months, we’ve seen groups proclaiming their rights for equal treatment under the law and by others. While I strongly disagree with the violence displayed in asserting those rights, I agree with the message. I believe all persons have a right from conception to be treated with respect and dignity. God created everyone to be equal, and he loves us all unconditionally. Unfortunately, I don’t believe everyone in the world shares my point of view. Due to that fact, laws exist to protect those groups who suffer from acts of discrimination due to age, religion, race/color, nationality, gender, sexual preference or identity, disability, or military status. Some states have more; some have fewer groups protected. However, I believe that caregiver discrimination is an issue that deserves to be recognized.  How do you feel about it?  Do caregivers need to be a protected class against discrimination?  Here’s why I believe they do.

      In the “2020 Report, Caregiving in the U.S.” conducted by AARP Family Caregiving and the National Alliance for Caregiving, 48 million adults provided care to family members over seventeen in the United States. That number was up sixteen percent from 2015. 

• Twenty-four percent (24%) of them provide care to two or more family members.
• Eighty-nine percent (89%) of the caregivers are relatives.
• In the age group 75+, seventy-four percent (74%) of the caregivers are also 75+.
• Eighty-one percent (81%) of caregivers ages 18-50 provide care to persons over 50.
• Sixty-three percent (63%) need care due to long-term physical health needs.
• Twenty-seven percent (27%) have mental health needs requiring oversite by a caregiver.
• Thirty-two percent (32%) have memory disorders such as Alzheimer’s or dementia as the reason for a caregiver.

What does this mean?

As a nation, more Americans are becoming caregivers for their family members every day due to an increase in the number of them who have long-term physical health, mental health, or memory problems.  The following observations could explain the reason why so many caregivers may be staying home to provide care. Despite these numbers climbing every five years, another part of the survey showed that the caregivers could not receive the resources they needed to care for their family members.

Data Indications

This data indicates that the family caregiver could not afford or could not access the care needed for their family member. Is that due to a broken health care system, or do lawmakers feel that these individuals’ needs do not warrant the resources necessary to fix the access problems? Could caregiver discrimination have something to do with the fact that caregivers are often women and the elderly?  Does that have anything to do with the fact that there is no urgency to fixing this problem to get them the assistance they need?

• Only 48% (down from 53%) showed hospitalization in the past 12 months.
• Only 31% received indicated they had paid help.
• 26% reported more difficulty in coordinating care across various providers.
• 27% reported more difficulty obtaining affordable services.

Consequences

• 21% of caregivers say they feel alone due to physical, emotional, and financial strain.
• 41% (down from 48% report their health status as “very good or excellent.”)
• 21% (up from 17%) say their health is “fair.”
• 23% report difficulty seeing to their own health needs.

 

Why Do I Think Caregivers May Be Victims of Discrimination?

Discrimination has to do with making decisions or treating someone differently based solely on specific characteristics (ex., because you are a girl, you cannot be hired as a cowboy).

 

Lack of Respect by Healthcare Professionals

While they are front-line caregivers, they are not afforded the same respect and recognition as other healthcare providers.  For example, when a caregiver brings their family member into the hospital, doctors and nurses often ignore what they say about their symptoms and observations if the information doesn’t match what they expect to see, especially if they do not use the correct medical terms. Caregivers do not have training in medical terminology. Therefore, healthcare providers fail to give them the respect they are due when they attempt to share information about their family member’s health status. Caregivers wait in separate areas during a patient’s initial assessment in the emergency room or hospital admission. They are not included in team meetings to discuss medical care planning for the patient or long-term patient goals, nor are they included in discharge planning needs. Though no one has more knowledge about what the patient needs to survive once they go home, healthcare teams often fail to invite caregivers to team meetings to discuss discharge or care plans for patients because they assume the family has nothing significant to add.  Could caregiver discrimination in these situations be influenced by socioeconomic, ethnic, or gender considerations? 

 

Family Medical Leave Act Retaliation

Congress passed the Family Medical Leave Act to protect family members who needed to take time off work intermittently or continuously to deal with their illness or their immediate family’s.  They could miss up to 480 hours per 365 days. However, here’s the catch.  It’s unpaid. Though employers are not supposed to retaliate against workers, the resentment non-verbally (and sometimes verbally) expressed to workers using this benefit creates a hostile workplace for those who must use it. Frequent users of the protection have their work performance and behavior monitored closer than other employees. The incidence of terminations for workplace infractions of those who also use FMLA would probably show a close correlation. Therefore, while the law has good intentions, it also comes around to bite them in the end if they use it. In my opinion, this is a clear example of how caregiver discrimination comes into play.

 

Unemployable

Employers won’t hire individuals known to be caregivers.  While employers cannot ask questions related to caregiving on applications, during the interview process, when reviewing hours of work, availability discussions often reveal (if the applicant is honest) the potential for lateness or occasional absenteeism. What is not understood by employers is that caregivers need health insurance and a reliable source of income desperately. If they find a loyal and understanding employer, the likely relationship that develops is one of commitment and excellence. (1) The caregiver doesn’t want to lose the job – they need the money and insurance. (2) They appreciate beyond words someone who understands their needs. (3) They know how rare it is to find a place that understands their situation, and they aren’t about to do anything that will mess that up on purpose.

Being a Married Caregiver is Penalized by Medicaid

Spouse caregivers are not eligible to receive financial assistance from  Medicaid to hire help in Virginia. However, if a relative other than a spouse (i.e., son, daughter, mother, etc.) lives apart from the one needing care, he can be eligible to receive Medicaid payments for providing caregiver services.

 

Conclusion

There are other situations where I feel caregivers are treated differently or prohibited certain privileges or access due to providing care, but I’ll save those for another day. Feel free to add comments. 

I’ve started a website to try to help caregivers with issues they encounter. “Becoming a Family Caregiver” provides information for new and experienced caregivers about how to perform care at home, tips on what to do in difficult situations, where to go to get help, and much more.  I hope you will give it a look.  https://becomingafamilycaregiver.com

Now That You’re Out of Quarantine, Don’t Forget Thos Left Behind

Quarantine is Over

Daily, the news carries reports of another state entering Phase One of returning to normal following the massive shut-down of the country to protect the vulnerable population from the Coronavirus. At this point, I think most, if not all, states have reopened markets that are not high-risk. People are emerging from their homes to explore the outside world once again. Many are shouting, “Freedom at last, freedom, at last, Thank God Almighty, Quarantine has Passed!” However, not everyone can shout that praise.

Immunocompromised Ill Left Behind

For many caregivers, quarantine is “business as usual.” Whether a President or anyone else sets a date when people are safe to come out of hiding doesn’t matter. Because, in the world of immunocompromised conditions, quarantine is the state of ordinary life. The declaration to stay home and the warning to watch what you do, where you go, and what you touch is unnecessary because those precautions are a way of life to them. The President could have used them over the past two months to teach others how to handle being self-isolated safely. However, even though they are experts, it doesn’t make what they do any more comfortable.

Medical Conditions at High Risk for Social Interaction

Immunocompromised and autoimmune conditions are just two of many illnesses that face potential life-threatening consequences if they encounter individuals with diseases spread through touch, droplet, or airborne transmission. Those with immunocompromised conditions are particularly vulnerable because they have limited or no defense against enemy invasions by bacteria and viruses. A person with an autoimmune disease responds with an immunity defense. However, once they get the cold or flu, their body attacks itself, believing that it has become an enemy. The self-attack makes the individual much sicker and their underlying condition worse. Therefore, they must remain isolated from others continuing with the social distancing experienced by everyone over the past two months.

Crave Relationships

Knowing your life may be at risk if you visit your friends does not keep you from wanting to see them, nor does it prevent you from developing severe depression up to and including suicidal thoughts. Think of how you felt when you could not visit your friends or hug your grandchildren at Easter. Now imagine facing knowing your life will be that way for the next fifty years. They crave human connection. They want to have relationships with others- to be able to talk heart-to-heart. They want to know someone remembers them and cares enough to check-in once in a while. Their caregivers feel the same way. However, they can’t visit like everyone else visits either.

Shopping on Line

While you are now out of quarantine and able to go shopping again, the caregiver is still shopping online to reduce their risk of exposure. They even have to try on clothes at home and send them back if they don’t look right after arrival. They have to wait for things they need to arrive instead of being able to go out to get them because they can’t leave the house and leave the one under their care alone.

Take-Out Only

They can’t go to a restaurant to sit down to eat–ever. It’s always take-out. Restaurants are too crowded and germ-friendly for the transmission of airborne disease. So many events and so much fun must remain off-limits due to exposure to high-volumes of potential carriers. Fresh fruit and vegetables, shell food, and some other foods carry bacteria, parasites, and other deadly creatures that are harmless to most people but not to anyone immunosuppressed.  Therefore, they can’t share in pot-luck dinners because the food preparation might not always be adequate in every case to keep bacteria away, and they can’t risk the “what if.”

In general, I don’t recommend preparing food for homebound families, usually for the following reasons:

(1) The patient or other family members may have special diet restrictions.

(2) The patient or family members may have taste preferences. Medications often interfere with how things taste.

(3) Family members may have food allergies resulting in allergic reactions.

(4) Food, high in toxic chemicals or known to harbor bacteria or insects, maybe part of the ingredients found in casseroles or other dishes. While they might not be harmful to someone healthy, they are devastating to an immunocompromised patient.

How you Can Help

     1.  Providing a Meal

If you want to provide a meal, ask which restaurants they like to frequent, get their take out menu, and let them select a meal from there. Then pick it up and deliver it to them. The “delivery” is the most significant benefit of your gift.  Gifts, where the caregiver or patient has to go pick up the meal or product themselves, reduce the benefit of the contribution to the point of almost making them unusable due to the difficulty of leaving home.

2. Being a Sounding Board

Call periodically and to check-in. Ask leading questions to encourage them to talk.  They have no one with whom they can share how they feel. By listening, you can help give them a connection to someone who hears their needs and cares. They need to “feel” the “touch” of another person even if through the airwaves.

3. Visit but with Limits

Don’t visit unless the caregiver invites you to come by, and then, don’t stay long. Don’t be offended by this. They love you and would like to be able to spend time with you, but they only have 24 hours in their day, and they need at least a 30-hour day to get everything done that they need to do.  If they get a visitor, they still need to do 30 hours of work because nearly everything a caregiver does is essential and wait until tomorrow in many cases.  When taking care of someone’s life, some tasks must complete every day-no exception.

Therefore, these households have strict schedules if they hope to accomplish everything necessary every day, including treatments and medications.  They love your company, but to have someone stay very long means they must make up the time lost that day, and it usually gets made up by getting less sleep that night.  Therefore, a good rule of thumb is to stay no more than 30-60 minutes at most–thirty minutes is probably best.

4. Offer to Run Errands

Whenever you’re on your way to the store, call and ask if they need you to pick up anything for them. Picking up a prescription, supplies, or a take-out-meal is one of the best presents; you can give someone stuck at home. It’s like getting a birthday present when someone offers to pick something up at the store, and you know that they don’t mind getting it and bringing it back to you TODAY.

5. Offer to Do Chores for Them

Offer to do chores for them. I’m sure God must give crowns in heaven to people who help the homebound. We never have time to do anything but essential, and rarely do we have extra money to pay anyone to do them for us. If you want to help someone who is homebound, offer to cut their grass, rake their leaves, take their car to be inspected, clean their house, wash their vehicles, perform repair work, and do whatever they need. If you have a church group or club looking for an outreach, here’s the perfect one.  Just look for families who are homebound, they always need help, especially if they just became homebound and don’t have a network of people to call yet.

Don’t Judge

In conclusion, don’t judge them. You would be surprised how many people talk about those who are homebound to say they could get out and do more if they just would–like they know anything about their lives. Most of these conditions are invisible. You can’t look at the person and see their pain and suffering.  They don’t want to look awful when they see you. Therefore, they make themselves look good and try to act healthy. They don’t want you to think they are ugly – would you want someone to think that of you? So they try to look and act their best. In return, rumors say they aren’t that sick. For shame! No one knows what goes on underneath someone else’s skin. Having lived through the experience of two months of quarantine yourself, would you voluntarily isolate yourself from the world if you did not need to do so? Therefore, can’t we trust them when they tell us that their medical condition requires them to remain at home? Would anyone who didn’t have to self-isolate do that if they didn’t have to do so? I don’t think so.

As the full-time caregiver for her disabled spouse, Donna has more than 30 years of experience providing care not only to Lynn but before him, to her daughter now in her thirties. After retiring from full-time employment as a Human Resources professional in 2018, she focuses her attention on helping support the eight members of her immediate and extended family needing caregiving support daily. Between her first career as a registered nurse and her years working in the employment world, Donna developed many skills that make her successful in problem-solving and crisis management. Her greatest desire now is to put those skills to work to help relieve some of the burden caregivers face every day.

Resources:

Virginia Department of Health -Coronovirus  

Wash Your Hands 

Precautions for Infections 

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.

Lynn’s son was a secondary caregiver

Lynn’s diagnosis of multiple sclerosis occurred in 2006, and by 2011, his condition had progressed to the point of requiring the use of a power wheelchair. He and his son are very close, and his son became very vested in helping me with his father’s care. Until he went away to college, he often covered afternoons for me if I had to work late, or came to stay with his father if I had places I needed to go on the weekend. I taught him how to perform all his father’s care in case anything happened to me.

 

In hindsight, it was a significant burden to place upon one so young even though he willingly requested the assignment. He, like so many other children of persons with disabilities, felt not only love for his father but a duty and responsibility to care for him as his son.

Continue Reading at 

https://multiplesclerosis.net/caregiver/children-caring-parent/

 

“We often forget the child-caregiver when we speak about caregiver roles; however, in some single-parent households, the child is the primary caregiver for the parent. “

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 his Dad’s health declining quickly and progressing rapidly from a wheelchair to a bed and him dying from MS complications before he turned fifty. Lynn watched as he struggled with depression and the frustration of having others do everything for him.

Determined that the same would not happen to him, Lynn lead a somewhat healthy lifestyle.  He loved to cook and focused on eating fresh foods he prepared himself. He avoided preservatives and kept up with “healthy living through food” trends.  He was slim, physically fit, and rarely got sick. He often worked outside, which exposed him to a lot of Vitamin D known to be useful for restoring the neurological balance of the body.

On the other hand, Lynn was a musician playing in bars and clubs filled with heavy smoking nearly every weekend. He smoked from the age of eleven through fifty and drank alcohol almost every day.  Following in his father’s footsteps as a carpenter, he was exposed to lots of glues, paints, solvents, arsenic, and other harsh chemicals which may have been harmful and contributed to his condition. 

FIRST SYMPTOMS OF MS

When I met Lynn, he was the picture of health and had a positive mental outlook.  He was confident he would never have MS. When Lynn first started having symptoms of MS, he denied that the problem with his foot-dragging could be MS-related.  He said because once he rested, the symptoms went away, it could not be MS.  However, the dragging was a frequent event.

Then, he developed a limp.  His doctor thought it was sciatica due to sitting on his billfold.  He was referred to a chiropractor and a physical therapist and changed how he carried his money, but the limp continued.

New problems began to surface.  Lynn started having trouble passing his urine. Since he was in his 30’s, he rationalized that maybe his prostate was starting to enlarge. His primary care doctor prescribed medication to stop bladder spasms and to reduce the size of his prostate. When his hands stopped moving in unison, the differences in speed was not as easy to explain. True, the difference did not occur all the time, but still, the difference happened often enough that something was wrong.  Still, Lynn refused to consider it might be MS.

Heat intolerance was the next symptom.  Heretofore, he could tolerate heat well.  Working outside was never an issue; he could stay out and fish all day in any hot weather without any problem if he had a cold drink. Suddenly, he could not tolerate any heat.  On relatively warm days, not even scorching day, he felt like he was melting in the heat and could not go on.

TESTING TO CONFIRM DIAGNOSIS
One thing leads to another, and he received his diagnosis of MS in 2006.  The head MRI the neurosurgeon ordered (see “Our story”) showed lesions.  The neurosurgeon sent him to a neurologist who ordered confirmation blood work and a lumbar puncture.  The lumbar puncture was painful.  His lower spine curves and they had a difficult time inserting the lumbar needle.  He was stuck three times, and at least one of the areas leaked spinal fluid afterward. He had the mother-load of a headache for two weeks after that. He would go to work and lie on the floor with such a bad headache he could not raise his head; it hurt so bad. Finally, he went to the emergency department, and he received an IV of caffeine and pain medicine, which helped.

When the multiple sclerosis diagnosis was confirmed, he was referred to an MS specialist who helped him enroll in a research study.  Unfortunately, the drugs didn’t keep the condition from progressing. There are four types of MS.  He has the most progressive type. His condition progressed steadily from limping to using a walker to needing a wheelchair and now requiring a powerchair.  He no longer can use either of his legs.  Though he can move them slightly, he can voluntarily position them or use them for weight-bearing. His right hand has movement but no useful function currently.  His left arm has most of his remaining ability. He can still write on occasion and use that hand to move some objection with significant effort.

Due to bladder spasms related to a neurogenic bladder, he requires intermittent catheterizations to void.  His weakened abdominal muscles also necessitate the use of a bowel regimen to help with a bowel elimination program.  Due to frequent hospitalizations, chest and diaphragm muscles are weak compromising his ability to clear lung secretions.  Unfortunately, an increase in hospitalizations due to pneumonia resulted due to difficulty in clearing lung secretions effectively. Efforts to improve lung capacity are underway with Lynn choosing to practice songs from choir and radio improve his breathing rhythm.   

In the meantime, he has also developed hypothyroidism, vascular dermatitis, and high blood pressure.  His mitral value had to have a clip placed two years ago.  He fell from a lift we were using in 2018 and had a severe head injury with three brain bleeds (all resolved now) and other fun and games I’ve just chosen to forget. We’ve learned that one autoimmune disease often leads to another.  

A YEAR OF CHANGE

The year we found out Lynn had MS was one full of challenges.  First Lynn heard he had MS on our way back from an anniversary trip to the beach.  A few days later, a hurricane came by, causing us to lose power for several days. After getting the power back, we discovered that a tornado had sent a tree through the windows of our car.  When I called Lynn to tell him the car was totaled, he told me he was waiting to hear if he had a job anymore.  Later that day, he got the word that the entire department was outsourced.  He had about eight months before they closed the shop to find a new job. He left there and started a drafting business out of our home that lasted only a few months. Unfortunately, the economy tanked, and the orders for business dried up quickly. 

BUILDING OUR HOME

A few years after we were married, we bought land and Lynn drafted plans for a new house.  He wanted to build one for us instead of living in the house that my first husband and I bought.   After finishing the basement; however; Lynn was too weak to continue to work alone.  Whenever he went to the land, I went with him to mix the mortar.  I guess you could say mixing mortar was my first caregiver role for him.

FINDING A NEW CAREER
Around that time Lynn stopped driving because his spasticity became too extreme for him to apply brakes; plus, he had to stop playing drums because he could not hold the sticks.  He had so much talent, but there was so little he could still do.  

His son came up with an idea for him to try writing.  He could type, not fast, but he could use one hand.  He decided to give it a try, and he enjoyed it. He got the idea for a book, and in four months, he had written a novel.  I helped edit it, and he submitted it for publication.  They took it!  His first novel was published and released in April 2009.  Rising Tide.

 Rising Tide available from internet bookstores

Now in 2019, he has released three books in the Rising Tide series (Rising Tide, Eden’s Wake, and Deadly Reign) A fourth book, Terminal Core, is an independent sci/fi/fantasy story. His fifth book, Dalon Con, is currently being edited for release soon. It too is a stand-alone novel.

From the challenges of MS, Lynn chose to make lemonade out of lemons. He says he feels God’s blessing in his life every day and knows that God still has much for him to do.  He now uses his creativity to spread the news of God’s love through the stories in his novels.  Look closely as you read his works. You’ll see the thread of good triumphing over evil through the power of the Mighty One. 

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 fact that we had recently married and it was a second marriage for both of us, played a factor in how we adjusted. As is true with many second marriages, especially those with children, relationship issues associated with old baggage, got in the way of how well we dealt with the onset of a chronic health condition.

BEFORE WE MET
After my divorce, I shared joint custody of our two children, Sarah nine (9), and Daniel six (6) with my ex-husband. Thought a year since our divorce, conflicts continued between us related to the care and treatment of what I perceived to be signs of obsessive/compulsive and classic phobia disorders in our daughter. We had a significant difference of opinion related to the existence of whether she had an ongoing medical problem that needed treatment or if she had a behavior problem instead. Therefore, I spent a significant amount of my time supporting her. 

My son participated in a variety of sports. Since we lived in a rural area, that meant a lot of time spent in the van going to and from sporting events.  When my ex-had the kids, I worked a second job as a home health nurse to make ends meet.  I also was a girl scout leader, taught Sunday school, sang in the choir at church, attended all the children’s special events and had a very demanding job that kept me busy every minute I was not with the children.

Being a single mom with two young children and working full time, my opportunities to meet someone were limited. Why I thought I had time to date was beyond me, but I was lonely. Friends suggested I try social media to screen potential dates. I did, and it worked.   I met Lynn by answering his personal ad in Style magazine.

WE DATED

I was drawn to Lynn’s ad because he spoke of how important family was to him, and he shared that he was a Christian.  I called the number in his ad, and our first phone call lasted about two hours. We seemed to hit it off well, so we agree to meet to see if the chemistry continued in person. We met at a local shopping mall where he finished his Christmas shopping (on December 23 which should have told me something about him) for his son.  We discovered that his son and my son were only three months apart in age and that we had a lot in common. I found out he played guitar and sang in the church choir. My interest steadily grew.

AND THEN WE MARRIED
Lynn and I dated for a few years before getting married.  We both were scared to try again and were reluctant to blend our families.  Plus, we were both very independent!  To be honest, I tried to find reasons not to get married because we were very different from each other. I was not sure we were going to work, but each time I tried to get the courage to break up, I would first pray about it, and God always sent me a message to say, “Stay with it.” So, I did.

Still afraid I might be making a mistake, we moved forward with the wedding on October 11, 1997. At the wedding, Lynn’s son was bitterly unhappy throughout the service, and by the time we left for our honeymoon, my son was crying as well.  I wondered throughout the ceremony if I was crazy as I looked at the children and then thought of our differences, but God had a plan.

As predicted, our first few years were challenging.  Our parenting styles were decidedly different. Lynn did not operate on a schedule, would not commit to any specifics on anything, and did not like structure. I crave structure, need closure, and don’t like waiting to the last minute to do anything.  To say our styles clashed would be an understatement. Our marriage survived and became stronger, however, because we had committed it to God and each other and would not go back on that promise.

CAREGIVING FOR MY DAUGHTER

During this time, my daughter continued to need a great deal of support.  Often, I spent more time with her than with Lynn.  I found it a challenge to give both what they thought they needed from me.  At times conflicts arose over whose needs came first. Lynn was very understanding that Saran needed a great deal of help through her struggles, and without that encouragement, my ability to support Sarah would have become compromised.  However, her needs were so great at times that he would feel neglected and wonder if I even cared about him at all. It seemed I was always putting her first because her needs were always greater, yet he was my husband. It created an issue between the two of them for a while as well.

FINDING WAYS TO BE TOGETHER 

One of the ways we worked at developing our relationship was through our church activities.  Lynn and I both liked to sing. He was terrific at it, and I just wanted to do it.  My talent was drama, and when our church began a 17th Century Dinner Theater, I jumped at the chance to become involved.

Since Dinner Theater involves singing both Lynn and me participated.  We both loved it and made many good friends.  From that experience, we expanded our participation into other roles at church – Lynn joined the praise band, and I started working with a drama team. We both were still in the adult choir, and both also started playing handbells.  I became involved in a support group, Discover Freedom, whose purpose was to provide encouragement and support to those fighting the challenges of addiction or who needed a group to help them find freedom from whatever struggles they were encountering.  Lynn and I were very busy, and the activities were bringing us closer together while also creating a solid support group for us at our church.

THEN MS STRUCK

During this time, Lynn began to notice his foot-dragging after he would run (he was devoted to exercising and tried hard to stay in shape and work out every day).  The “foot drop” effect was randomly causing him not to pay much attention until his right leg started bothering him as well.  It would occasionally seem to give out on him. 

I knew his father died in his 40’s from complications of MS. I asked him if he thought his symptoms could be related to MS?  He said he had asked the doctor about MS, and the doctor did not believe his symptoms were MS-related.  Indeed, the physician prescribed physical therapy, and his foot got better.

However, the foot weakness kept coming back, and the physical therapy was not helping it improve.  I mentioned MS again, and Lynn kept denying that was the cause.  One night, I saw Lynn testing the movement differences for the fingers of his two hands. He would wiggle the fingers on both sides, but one hand was moving much slower than the other.  That alarmed me.  I confronted him with what I had seen.  He denied it was anything of concern, but having a nursing background, I knew something neurological was wrong. I feared MS or some other neurological condition.

HE GETS DIAGNOSED

I was a little frustrated that his doctor wasn’t finding out what was wrong with him. Plus, I was frustrated with Lynn, too, because if a doctor did ask him how he was, he always said, “If I was any better, I couldn’t stand myself.”   I knew he was not sharing all his symptoms, so I told him that from then on, I was going with him to all doctor’s appointment. I knew I had to go if I wanted to know what was shared and what was said. 

His next appointment was with his cardiologist (He has mitral valve prolapse).  His heart seemed fine, but his doctor asked me if I had any other concerns.  I told him, “not about his heart, but he’s got something wrong in his upper back.”  He asked me who I wanted Lynn to see. Fortunately, he was able to get us the appointment I wanted, and Lynn was scheduled to see a neurosurgeon.  I thought if it wasn’t MS it had to be a problem in his spine. It might not be in his lower back since the symptoms were appearing in his hands.  The neurosurgeon agreed with me and ordered a head and neck MRI.

After having the MRI, Lynn and I went to the beach for our anniversary. On the way back, we got the news.  Lynn had MS.  Though I expected it, I still felt like I had received a kick in the stomach.  He, of course, felt worse.  He had seen what MS did to his Dad, and he didn’t want his son to see him reduced to the disability in the same way.  He cried outside, unloading the car.  I cried inside as I unpacked the bags.  Then, we cried together.  So, began the testing, the treatments, the years of shots, and the steady decline in his abilities.

The children have now grown up and are out on their own.  Our daughter married a very supportive young man who took my place in caring for her (and does a fantastic job of it).  Both boys are now married as well with wonderful, caring wives. We are blessed beyond measure with each of the choices our children made in spouse selections.  We “socially” adopted an adult friend of our daughter’s, whose parents are no longer living and asked her to become part of our family in 2018.  Of greatest joy; however, is the addition of all our grandchildren. We have four biological, three from our adopted daughter and possibly two more adopted children coming shortly.  Nine grandchildren! What joy!

His neurologist says Lynn has Primary Progressive Multiple Sclerosis, the rarest form of MS.  Since his diagnosis in 2006 he has gone from being very healthy and able-bodied to being in a powered wheelchair and unable to do very much without assistance. He has a neurogenic bowel and bladder and needs assistance with all activities of daily living.

For many years I worked remotely and balanced a full-time job with full-time care responsibilities for Lynn.  Now, I am retired and am fortunate to have a Monday through Friday caregiver to help me provide Lynn’s care while I work on this website as a part-time job to supplement my retirement income. It’s still a 24/7 responsibility; however.

The purpose of this blog is to share with you the challenges and joys I’ve experienced as a caregiver.  They are often raw and heartfelt and very personal, but sometimes it helps to relate when you feel alone. I hope you find some support through this sharing.
Feel free to comment with your experiences as well.

MS Caregiver Donna

DISCLAIMER
In my blog, I sometimes mention medical options, give information about treatments or medications, or explain what I know about a condition, etc.  Information provided is based on my limited knowledge of the topics presented and how they apply to Lynn or me.  Please do not consider this medical advice.  Everyone’s situation is different, and the only way to make sure you get what you need for your case is to have your healthcare provider evaluate you and develop a treatment plan just for you.  Therefore, please keep in mind the opinions mentioned here are strictly my own. The opinions do not represent anyone other than myself and are not a substitute for your doctor.  Thanks

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, within a few years of our marriage, his diagnosis of primary progressive multiple sclerosis resulted in my becoming his full-time caregiver. 

As I have interacted with other caregivers and the healthcare system over the past thirty years in caregiving for my child, my spouse, my mom, and now, my grandchildren, the lack of support for family caregivers is a glaring deficit in our healthcare system.  We expect untrained and unprepared family members, often still in shock over what has happened to their loved ones to go home and care for them in the same way a nurse provides care after four years of training.  Then they wonder why hospitals have such high readmissions rates after discharge?

Family caregivers 

• Don’t have the emotional support they need for their well being
• They don’t have the training they need to problem solve the unexpected
• They don’t have the knowledge to know how to prevent problems
• They don’t have the resources available to make their jobs safer and more comfortable to perform
• They don’t get the rest they need to be able to be safe for themselves and the one under their care
• They don’t know where to go to get help, and they don’t have the time available to research where to go to find it

Once I retired, I felt a strong desire to reach out to other caregivers to help them in a way that was not available to me when I needed it. I didn’t want anyone else to go through what I had suffered. So, I started researching the internet to see if anything currently existed like I had in mind.  I found that many agreed there was a need, but few offered solutions.  Some universities offered support to their family caregivers using their facilities.  There are also some other caregiver blog sites trying to do similar work.  I applaud their efforts and hope this trend continues. 

For now, my mission is to reach as many caregivers as I can

• to find resources for new and current caregivers for information and training. In some cases, I may produce the information and training, and in others, I will provide the link.
• to promote products and equipment that make life better for the caregiver or the one receiving care in some way.
• to provide consultation or problem-solving assistance to families or facilities
• to promote a community of caregiver that encourages individuals to privately share their stories and lives for emotional support reducing feelings of isolation
• regularly sharing topics related to caregiving through blogs with an open discussion to promote lively discussion and exchange of ideas 
• to occasionally gather data from members through surveys regarding issues of interest supporting caregiving

With God’s blessing and your support, I’ll be successful on that mission.

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