Loss of Health
Caregiving for a Loved One
Dad's 1958 Massey Ferguson
After having been a part-time caregiver for my father the past year and a half, I can better understand the grief associated with a long-term illness. Honestly, I can say that I have been through most of the grief cycles and stayed too long in the angry phase. Mom and I have finally gotten to acceptance and are making many sweet memories now.
It is with respect that I explain some of our journey and, hopefully, some steps that may be helpful to others. As caregiver you are the patient’s advocate. The first important point is to get a notebook to keep notes from doctor appointments, medications, tests, contact numbers, etc. Make sure someone goes to every appointment to ask questions and keep notes. Get a good calendar to coordinate all pertinent information in one place. Try to keep the patient’s emotional, physical, and spiritual health of primary importance.
Here are some areas that may need to be analyzed and may require decisions: medical, transportation, nutrition, hygiene, behavior, daily tasks, medications, finances, mail, safety, leisure activities, and living environments. Make a list of important information: medications, insurance, bills, bank accounts, savings, IRAs, mutual funds, wills, living will, trusts, and power of attorney. Safety, meals, and medications are of primary importance. Review the home for safety and remove furniture, etc. that may be in the way and rugs that may cause a fall. Learn how to do all aspects of caregiving, especially administering medications, without taking over and learn how to step back when it is a task they can do for themselves. Locate area transportation providers, especially for handicapped seniors. Consider meal options like Meals on Wheels. Check to see if the patient is eligible for any Veteran Administration services. Attend a caregiver training so you can research all possibilities for services, including in-home care, home health, physical therapy, occupational therapy, speech/language therapy, VA services, respite care, assisted living, and nursing home care, for current and future needs.
We tend to focus on our loved one who is ill, but the health of the caregiver is also hugely important. Because there is a tremendous amount of guilt, anger, stress, frustration, sadness, and physical demands, the caregiver is at risk also. Try to also prioritize the caregiver’s medications, doctor appointments, nutrition, and sleep issues. Schedule times for help in the home through friends, relatives, home health, respite, or self-pay. Also, have a list of people living close who can substitute or step in when there is an emergency. Do not forget about your social needs! Time off for errands, a support group, and special activities need to be built into your schedule. (There are many caregiver support groups available online, through the local hospital, VA, and churches. Sometimes it is hard to ask for help; it will be necessary at times, so put a list together of what you need. We have had tremendous help from family and friends who continue to visit and bring meals. I cannot thank all of them enough for the support and prayers! We could not have walked this journey without them.
Be prepared for conflict, focus on the facts, prioritize daily, listen with an open mind, walk away when frustrated, respect the opinion and dignity of the patient, and pray, pray, pray even when you don’t feel like God is listening. Remember that you are never too old to be used by God. In the midst of the trials I can say I have been inspired by both Mom and Dad to never give up and to love like God does, unconditionally.
Having a chronic illness can impact your life in countless ways.
The life you knew before your illness may seem like a distant
memory, especially when you're dealing with many symptoms
You may be in constant pain and unable to get a good night's
sleep. You might have to quit your job and suffer financial problems.
Your appearance may change. Or you may look the same, making
it even harder to explain your illness to the outside world. Your
interpersonal relationships can change, when suddenly your spouse
or loved one takes on the roll of caregiver. All of these changes can
cause stress and strong feelings of anxiety, fear and anger. Many
people feel a lack of control and uncertainty about the future.
According to the U.S. National Center for Health Statistics. chronic disease lasts more than 3 months, cannot be prevented by a vaccine or cured by medicine, and does not disappear. I have learned first hand what it's like to have a chronic illness, beginning in the spring of 2012.
My Journey From Health To Chronic Illness
Before the illness I was healthy and active, a wife to my wonderful husband, mom to four amazing kids, teaching Special Education full-time at a local public school. But, then I was bit by 2 tiny ticks and everything changed.
I initially became so sick with a mind-numbing headache and crippling nausea that I was in bed several days trying to recover. I was so weak I could barely walk. My coloring was pale and ashen. It felt like the worst case of the flu I'd ever experienced. I was so out of it that I don't remember much from those few days.
When I had recovered enough to go to the doctor I asked him about Lyme disease. At this time I didn't know much about it, other than it was a tick-borne illness. The doctor asked if I'd traveled to the northeastern United States, but the furthest I'd been that direction was North Carolina. He then told me, "You can't get Lyme disease in
Missouri." He said I had "tick fever." Tests were not ordered. No prescriptions were written. The doctor told me it would take time, but I would feel better eventually.
But in the months between the tick bites and my eventual Lyme disease diagnosis I felt like I had the flu nearly every day.
As a teacher, I was around children all day. Inevitably, I came into contact with many germs on a daily basis. I was exposed to many illnesses due to having four children of our own. And I didn't remember getting sick so frequently. In fact, my resistance to illness had always been strong. So I initially thought perhaps I was getting sick a lot due to exposure to all the germs I came into contact with on a daily basis. I usually just pushed through my illness knowing my family and students were depending on me. I figured I'd improve with time.
But, as the weeks and months passed, I began to experience other concerning symptoms I couldn't ignore. An unrelenting pain began coursing throughout my entire body. The pain was so strong and constant I couldn't sleep. I was exhausted all the time, had trouble breathing, and experienced frequent, intense migraines. Lethargy and extreme weakness became the norm. I developed a heart murmur and had frequent heart palpitations, even while lying in bed.
Memory Problems And More
And I started forgetting things and stumbling for the words I wanted to say. The brain fog was so great at times it was starting to worry me. I was driving one morning and came upon a traffic light feeling confused. As I sat at the intersection a few seconds, I struggled to remember whether the green or red light meant to stop or go. The driver behind me showed frustration with my indecision. He started honking for me to go.
Also, I recall getting lost a few times when I was driving. And I started calling our children by the wrong names. I wondered if I was getting Alzheimer's.
During these 18 months leading up to my diagnosis I went to multiple doctors including several specialists. They gave me a variety of tests and innumerable blood work all in an effort to figure out what was wrong with me. I was placed in a Holter moniter for 36 hours to test for heart problems. My doctor ordered months of Physical Therapy due to muscle weakness and wasting. I lost 20 pounds in a short period of time for no apparent reason. My doctor and Physical Therapist expressed concerns about Multiple Sclerosis. Thankfully, I was tested and MS was ruled out.
Searching For Answers
I was diagnosed eventually with multiple chronic
and autoimmune conditions including:
Chronic Fatigue Syndrome
Mixed Connective Tissue Disease
Tularemia (another tick-borne illness)
I had multiple allergic reactions to a variety of foods, ran a fever nearly every day and would get hives and strange rashes on my face, neck and torso (where the tick bites occurred). I developed mild dyslexia for a time and had difficulty reading numbers. As an avid reader I developed a great frustration when reading text. Around the same time I started having twitching and tremors in my hands, arms, legs and abdomen. I recall one time when I had been bedridden for several days, running a high fever and missing several days of work. I could barely walk anymore without extreme effort and felt as though I was dying.
I didn't understand why all of this was happening. I had always been so healthy before the tick bites. I wanted to find out the root cause of my illness. But each time I went to the doctor, it seemed like they only wanted to treat my myriad of symptoms. It was incredibly frustrating. But I knew everything had to be related to the tick bites. And I persisted in sharing this with my doctors until they listened and gave me the recommended tests.
Psychological Stages Of Chronic Pain And Illness
According to Jennifer Martin, PsyD, there are Seven Psychological Stages of Chronic Pain and Illness:
Pleading, Bargaining and Desperation
Anxiety and Depression
Loss of Self and Confusion
Re-evaluation of Life, Roles and Goals
I found myself going through these stages, sometimes between two or three at a time.
At this point I started losing hope in ever finding out what was wrong with me, and I began questioning God. I asked Him, "God, if you truly love me then why is this happening to me and my family?" I felt confused, angry and forgotten.
I'm humbled to admit I reached this low point in my life journey. I never would have predicted that I'd one day question the very existence of the God I'd believed in and loved as long as I could remember. Nevertheless, it is part of my story, and I want to be real. Facing my health crisis tested my limits. And I was confronted with my own mortality.
I now believe that God was testing my faith throughout my illness. Sometimes I kept my eyes on Him, and sometimes I was stubborn and went my own way. Isn't it amazing how we can learn so much from the past, but when we're living in the moment it isn't always that clear? (At least this has been my experience.)
He Was With Me All Along
Lately God has been showing me how He was there for me, even when I was living through the most painful days. I see now how He has been with me every step of the way, when I was crying out to Him for help and healing -- and even when it seemed like God was being silent. As God reveals Himself to me, I see now that part of my story is a renewed faith in Him and hope for His plans for my future.
I love, "Be strong and courageous. Do not be afraid or terrified because of them (or what you're going through), for the LORD your God goes with you; He will never leave you nor forsake you (emphasis mine)" (Deuteronomy 31:6). I'm thankful He promised "He will never leave you nor forsake you." I love what Jon Bloom says about our human perceptions: And when we feel forsaken by God we are not forsaken (Hebrews 13:5). We are simply called to trust the promise more than the perception.
In the midst of the trials, and despite His faithfulness to me
and our family, I still felt alone much of the time. I learned
this is common for individuals confronting chronic pain or
illness. I believe God was and is saying to me , "Take up your
cross and follow me...(no matter what) (emphasis mine)"
I may be a slow learner, but I'm so thankful for His grace and
patience with me through it all. And I'm looking forward to
what He's going to do in the coming years. He continues to
bring beauty from ashes.
My illness has taught me to take time to slow down (although this is still a challenge). I'm learning to refocus my priorities. For me, this includes prayer and having real, meaningful conversations with the people I love.
I hope you will learn from my mistakes and be encouraged in whatever challenges you experience in life.
Tips For Coping
With Chronic Illness
1. Educate Yourself
Read, study, and learn as much as you can about your
condition or disease. While doctors are highly-trained
professionals, please conduct your own research before
believing everything you hear. I'm pleased with the team
of doctors currently managing my medical care and treat
-ment. If you aren't happy with the level of care you receive
consider getting a second opinion or switching doctors.
Before I have an appointment I make a list of questions to ask the doctor. This helps me be more efficient, prioritizing my essential questions first to make ensure they're addressed.
Also, consider using the internet to research. Sometimes the internet gets a bad reputation for providing hokey information. But, if you search medically reputable websites, I've found you can learn so much useful information. I'm a bit of a research nerd, so this process is actually fun for me. If you're not sure what sites can be trusted, you may want to ask your doctor for recommendations.
2. Express Gratitude
Say "thank you" to your loved ones, friends, and family. Being chronically ill isn't easy for them either, especially if they are taking on more responsibility. My dear husband has helped take our children to multiple practices and events. This is in addition to his full-time job as a High School Principal. He found it difficult to see me sick, but he cared for me throughout my most difficult days. I'm forever grateful to him for his love and support.
In addition to expressing gratitude to others, I recommend keeping a Gratitude Journal. I try to jot down one or two things I'm thankful for. Sometimes I'll write down a favorite verse, Motivational Quote or Power Phrase. I can come back later and read what I've written for encouragement and reflection.
3. Do Not Let Your Illness Define You
You can take charge and manage your disease instead of letting it define you. In the midst of chronic illness, do not lose your identity. Face your fears. Take one day at a time. Don't give into the temptation to have a pity party. Instead, re-frame your negative thoughts.
Think of a way to help someone else, even if you are bedridden. Maybe you could text or call an old friend or loved one who is facing their own crisis. Strive to be an encouragement to others.
Keep moving forward.
4. Give Yourself Grace
A wise friend gave me this advice when I was the the throes of my Lyme battle. I was trying to keep up with my duties as a wife, mom, daughter and friend. But it was not possible for me to maintain the level of busyness I'd been accustomed to my entire life.
I had to learn to give myself grace. When feelings of guilt would creep in (because I was not able to do many of the things I did when I was healthy) I had to remind myself of this. I had to find a new normal. Releasing myself from the pressure of being a do-it-all wife and mom allowed me to focus on what was really important.
5. Make Healthy Choices
Follow a healthy diet. Eat plenty of fresh fruits and vegetables. If necessary, lose weight. (17 Ways To Lose Weight Faster can help you get started.) Get fresh air and soak up the sun to increase vitamin D production. Exercise, if possible, to keep your body strong and flexible. Consider using essential oils as a natural treatment for pain and insomnia. Learn how coconut oil, apple cider vinegar and other natural ingredients can help improve your health.
6. Be An Advocate For Your Health
This is one of the most essential things I've learned. When I was going through the most serious, painful time of my illness no one could tell me what was going on. The doctors and specialists prescribed multiple prescriptions (many of which I never took). One suggested watching a video about walking. They told me to get a massage, get more rest, eat a gluten-free diet etc. They meant well, but their suggestions didn't address the root cause of my illness.
Thankfully, (albeit 18 months later) I tested positive for Lyme disease and other tickborne illness co-infections. This was a turning point in my illness. We felt relieved to have an explanation why my body was deteriorating. Even though no one wants to hear they have a chronic illness, we finally knew what we were dealing with. And that helped bring peace to the situation.
7. Seek Support
Building a support system is vital. Talking with supportive family and close friends can help. You might consider joining a support group or message board where people who have the same condition share experiences and hopes for the future.
I have a few friends who have Lyme disease. We communicate via Facebook, email and talking on the phone. We share our progress and treatments that have helped and encourage each other.
If you'd like to learn more about my story you may want to read:
Living With Lyme Disease, Part 1
Living With Lyme Disease, Part 2 Is Chronic Lyme Real?
The Shocking Truth About Forgiveness And Your Health
Also, you may like to read about The Spoon Theory in Chronic Illness: What's A Spoonie Anyway?
Can you relate to any of the Psychological Stages Of Chronic Illness And Pain?
Do you have more tips for dealing with chronic pain and illness? Please feel free to contact me. I love hearing from you!