Thanks to Jacqueline Marcell for sharing her story and advice on caregiving for elderly parents. Jacqueline’s parents both suffered from Alzheimer’s disease, which brought many challenges along the way, but also some surprising blessings.
Read our exclusive interview with Jacqueline, now an international speaker and author:
I was a television executive, but I barely survived as a fulltime caregiver to my (once-adoring) challenging elderly father and sweet ailing mother, both with Alzheimer’s which went undiagnosed for over a year. But after fighting through the medical system, endless tears, and depleting my parents’ life savings and much of my own, I finally figured everything out medically, behaviorally, socially, legally, financially and emotionally. The experience was the hardest of my life, but it also unexpectedly created a passion to save others from a similar experience, especially from getting so frustrated they commit elder abuse.
I became compelled to write my first book, ‘Elder Rage’ (www.ElderRage.com), launch the ‘Coping with Caregiving’ Internet radio show, became an international speaker on Caregiving & Alzheimer’s, and became an advocate for eldercare awareness and reform. I would have never guessed I would have this passion for a mission in my life!
You are not alone. There are 65 million caregivers in the U.S. and millions more who have been through it, so reach out and learn from those who went before you. Remember when life takes you to your knees and nearly destroys you to keep searching for the silver-lining even if you can’t find it yet. The lessons you are learning and the insight you are gaining will help others and may also lead you to a higher purpose, passion and reward.
Make a looong list of everything you need help with so when someone says, “Oh, I am so sorry about what you are going through–is there anything I can do?”, you can give the list and say, “Thank you, yes, there is. Here’s a list—pick one!” You may want to include things like: Get the car serviced, tires rotated, filled with gas; get broken items fixed; shop for items you don’t have time for such as a new battery for your watch; have clothes altered, pants shortened, mending done; garden, prune, clear the yard; take stuff to the Goodwill or dumps; organize the pantry, garage, attic, closet; pick up dry cleaning, groceries; make meals or cookies for the freezer; sit with Mom while I go to a support group; rent a carpet shampooer and clean the carpet; do Internet research on medications; evaluate the best local eldercare services and adult day care programs; take me out to lunch!
When I was a caregiver for my parents, joy came from the pride I felt in persevering and solving all the issues and making their lives the best I could. Now my joy comes every day from caregivers emailing me how much my book, radio show or seminar helped them — and that they feel so much less alone with their countless frustrations and rollercoaster emotions. It makes me grateful for all that happened because it gave me the drive to continue to help others.
Getting the right diagnosis for my parents, particularly my father who had always been a ‘Jekyll & Hyde’ personality who could be charming in front of healthcare professionals, yet horrible to my mother and me privately. Once I found and understood the Ten Warning Signs of Alzheimer’s and got my parents evaluated by a Neurologist SPECIALIZED in Dementia, everything started to fall into place. The doctor slowed the symptoms of Alzheimer’s, treated the (often present depression) and also the aggression in my father. Then I was finally able to get my father to accept caregivers, optimize nutrition and fluids with much less resistance, implement creative behavioral techniques, enroll my parents in a marvelous Adult Day Care program, get myself into a support group, and save my sanity!
Put you and your health FIRST and never put off your yearly physical and all medical tests. You can’t take care of anyone if you go down, which statistically happens all the time. I know, because even though I was under tremendous stress as a caregiver, I just didn’t think anything would happen to me. After caring for my parents I developed invasive breast cancer, went through it all, and had a heck of a time regaining my health. Please learn from those who have gone before you and never take risks with your health.
Jacqueline Marcell is an international speaker on Caregiving & Alzheimer’s, and author of the best-selling book, Elder Rage (print, audio, Kindle/Nook), a Book-of-the-Month Club selection receiving 50+ endorsements, 400+ 5-Star Amazon reviews, required reading at numerous universities, and considered for a film. You can read a sample of her book at http://www.ElderRage.com/SampleChapter.asp.
Thanks to Dana Brown Ritter for submitting this month’s caregiver story. She shares her perspective of the joys and challenges of caregiving in the interview below.
“I am a happily married caregiver to a quadriplegic. My name is Dana. My husband Michael was paralyzed when he was in high school and is paralyzed from the chest down. I am his caregiver and help him get up and dressed in the mornings, and the other way in the evenings. There’s a lot of in between things that I do for and with him that are so second nature at this point, I don’t even realize I’m doing it.”
“Caregiving hasn’t always been a blessing. It started out as a blessing – a special way to show deep, devoted love to the man I gave my life to in marriage. But, then, for a time it was all too much for me to handle. I had anxiety and depression. But then, through counseling, prayer, and pouring my heart out on a blog that my husband and I created together, I found dozens of other caregivers. I now have a network of other wives and girlfriends of men who are paralyzed or have some sort of disability. We share emails and Facebook messages and text messages on a daily basis. I love these women. They are like sisters to me. It’s rewarding to help them and it’s refreshing to have them to help me.”
“I find joy in knowing that Michael and I are a team. He cares for me, too. Not always in a physical way – though he does give an awesome back rub with those pointy elbows!”
“The biggest tip I would give other caregivers is to just admit that you can’t do it all. You need help, and it’s okay to not be a superman/superwoman. If you are a caregiver, you are a superman anyway. I would also encourage all caregivers to make friends with people who speak your language that you can cry to, vent to, and laugh with about all of the stuff the rest of the world will never understand.”
You can read more about Dana and her husband on Dana’s blog, www.lovelikethislife.com. Click on “dealing with disability” at the top to read about their challenges and about Dana’s caregiving journey.
For almost 10 years, Jeanne Apelseth has been caring for her partner Michael, who needs a double lung transplant due to his struggles with a degenerative lung condition. The journey has been a difficult one, with lots of ups and downs. Jeanne shares her story on her personal blog, The Journey Back to Life. Below are some of her thoughts about how caregiving has impacted her life.
“I rely on friends and family for support, but it is lonely and a challenge to take care of yourself while taking care of others.”
“The joy is in knowing that I am making life easier for the man I love and for making a difference. He would do the same for me.”
“The biggest obstacle for me has been finding the strength to carry on, remain positive and keep my head above water. Working a fulltime job, running a small business on the side and taking care of someone who is ill and can no longer care for himself is exhausting, to put it mildly.”
“My biggest tip is to try to enjoy the little everyday things in life, because that can save you from sinking. And try to find love, humor and joy in every day. And take care of yourself and don’t be afraid to ask for help. People like to help if they are allowed.”
For more information about Michael’s journey, watch this video created by Jeanne and a friend.
Not all caregivers are relatives or paid employees. Caring for a friend or neighbor is more common than you might think, as Susan Baughman found out when she started helping out an elderly neighbor. Read Susan’s inspiring story below.
“I often waved at an elderly neighbor when she and I were walking our dogs. I knew his name (Max), but not hers. She was nice, elderly, on a walker. I enjoyed saying hello. One day I drove by her house and they were wheeling her out on a stretcher. […] I ran up to the EMS guy and said “leave the door unlocked, I know she lives alone, I’ll track her down at the hospital and take care of the dog!”
I walked Max (her SHIT zu – emphasis intentional) every morning and every night for 3 1/2 years. I made breakfast every Saturday morning. I helped her dress for the day and for bed as her health failed her. I spent almost all my non-work time with her. She became the best friend I ever had, and don’t expect to ever find a love like that again. I held her as she died under Hospice care. (FYI – she was 40 years older than me; I’m 51 now. We both never had children so I see her as where I will be in 40 years!)”
“I got a lot of support from MY friends, who realized how much I was giving to Amy Jo and stepped up when I needed them. I also received a ton of support from AJ’s friends, who were an amazing source of comfort to her well before she knew me. Also, our local non-profit Hospice, Hospice Austin, was unbelievably wonderful. I now volunteer for them here in Austin.”
“Knowing Amy Jo Long and her friends was the best thing that ever happened to me. I would never have considered myself “that kind of person” (someone who would care for others in that way) but I did for 6 years, and it changed my life in so many ways it’s unbelievable. I wasn’t a particularly compassionate person. I never had kids because I didn’t want them! Maybe I always knew I was a little bit selfish? Who knows. All I know is, she made me a much more caring person that I ever thought I could be.”
“Crappy medical care. I’m sure you know from research that most ER visits result in the person returning to the ER within (something like) a week. That was us. The staff in the local “good” hospital rarely listened to what we said, as if we weren’t skilled enough to make statements about my friend’s situation. I’ve even reported it to the hospitals numerous times. I have a funny (now) story about one doc just not listening AT ALL to what we said. Not funny at the time, though.”
“ASK your friends and family for help when you need it – even before you need it! Realize that others, not related to you or your charge, are absolutely willing to help. My story was in no way unique, I was to discover. MANY people are unrelated to their caregivers: are neighbors or other strangers; a lot of those cared for are just recipients of good will.”
Susan Baughman is a legal marketing expert and the owner of Lawers Don’t Know Marketing, a custom-designed marketing service that provides individually tailored marketing programs for small to mid-sized law firms. Susan also has a deep love of photography. You can view her photos at www.7SeasPhotos.com.
Erica Kosal is a caregiver for her husband, who has chronic Lyme disease, and the mother of two small children. Despite the difficulties of juggling caregiving responsibilities with a full-time job, she finds joy in the midst of chaos. You can read about Erica’s story in the interview below and on her blog.
“My husband has chronic Lyme disease with ALS symptoms. Currently he is on a ventilator most of the day and can’t walk on his own. We have two small children as well (3 and 5 years).
I know that my husband shows our children in so many ways how to care for people, how to respect life, and how to be resilient. We have been very fortunate to have many friends and family help out in so many ways, and as a result, our children see kindness and have developed some great social skills.”
“I find a lot of support with my family and friends understanding that the whole family is affected and that at times, they just show up with food or insist they watch the kids so I can go see a movie (or something like that).”
“What brings me joy in caregiving is that I know my husband better than anyone, including our nurses, and so it makes me happy when I can anticipate Jim’s needs and try to do something special for him. It is nice to show my husband, by caring for him, that I truly love him.”
“The biggest obstacles I face in caring for him is time – I don’t have enough of it. He always needs more than I have and it is extremely difficult to find time for the kids, my full-time job, and any sort of time for myself (which is non-existent).
My other major obstacle is that the PT/OT/speech therapy situation is a weird one. The goal is for them to train me to do the exercises and that’s all. Jim does better when they come (it’s like going to the gym – you just do it more than if you are at home…) and again, the days go by quickly so I can’t do the PT with him that I should.”
“The most helpful caregiving tip that I could share is to be sure you stay true to your own gut. No matter what others say (like doctors), evaluate all the evidence and listen to your heart. You know better what the whole story is and what is likely to happen.”
Erica is also the author of a forthcoming book, Miracles for Daddy: A Family’s Inspirational Fight for Control and Sanity Against a Modern Medical Goliath, and a speaker on Becoming Unsinkable, Controlling Your Own Road, and Helping Children through Adversity. She and her husband offer help for others in similar situations through their website, Bounce to Resilience.
This month’s caregiving story comes from Michelle Tell, whose mother was diagnosed with brain cancer in 2002. The inability to find adequate homecare later influenced Michelle’s decision to start her own caregiving business, Seniors Helping Seniors. Read her story and the interview below.
“My mother was diagnosed with brain cancer in 2002. I had a 15 month old daughter at the time, and lived in a different city, so she and I would travel each week 5 hours to see her and help my dad take care of her. We would leave on Sunday and come home on Tuesday or Wednesday. Mind you, I also had a full time job at the time and was lucky enough to be able to work remotely, but still it was a challenge.
I did this for 6 months, at which time I became pregnant again. As I couldn’t keep up the pace, we began looking for professional caregivers to assist my dad. At that time, there were a lot of people in the business for the wrong reasons, and we couldn’t find caring, compassionate people. We ended up making the heart-wrenching decision to place her in a nursing community.
After she died, my husband and I decided we wanted to do something in her memory to help the senior community in our area. As a result, we bought a franchise in Seniors Helping Seniors, because my mom would have loved to have someone her own age there to help. So the end result is positive, and her memory lives on for all of us.”
How did you find the support that you need as a caregiver?
“We were unable to find professional support, and we turned to friends for support. They were always there and willing to help, but my dad’s pride wouldn’t allow him to reach out for them. Again, this was back in 2002, and today there is a lot more support in the community for people in the same situation.”
What brought you joy in caregiving?
“Seeing my mom’s face light up when she saw my daughter made everything worth it. That little girl was her single source of enjoyment and allowed her to forget, if only for a moment, the horrors going on in her brain.”
What were the biggest obstacles that you faced in caring for your loved one?
“The cancer robbed my mother of her motor skills, however her mind was fine. The problem with this is, she knew exactly what was happening to her and it scared her. To see a once strong person reduced to tears and literally scared for her life was difficult.”
What is the most helpful caregiving tip that you could share with another caregiver?
“Don’t be afraid to seek help. If the caregiver gets sick, she can’t help anyone.”
Frank Fuerst cared for his wife, June, for 17 years after her diagnosis of Alzheimer’s disease. Below he shares his story, along with tips for other caregivers.
“My wife, June, had early-onset Alzheimer’s. It was only in retrospect that I realized her illness may have started ten years prior to the start of our seventeen-year journey with Alzheimer’s.
“Those ten years were ones that were filled with uncharacteristic actions on her part that she could not explain and I could not understand. Once we realized that something was drastically wrong, we began to search for answers.
“Because she was so young, however, doctors did not consider Alzheimer’s as a possibility. So, we struggled for three years not knowing before we got an accurate diagnosis.
“After a couple more years, a neighbor reported seeing her drive as if she were a suicide bomber. Since she was becoming a danger to herself and others, I took an early retirement. I call the previous five years her independent phase of the disease, not because she was independent, but because I was still working.
“My retirement began a pleasant three years that I call our companionship phase, during which time we did her favorite things. That phase ended all too soon when she declined mentally.
“She became dependent upon me for help with the activities of daily living. Those activities included bathing, dressing, eating, maintaining continence, and moving from place to place.
“That dependent phase lasted for five years. During her final four years, she declined physically. I used a combination of day care, health care workers and nursing homes to give me a break occasionally from caregiving. That allowed me to keep June at home with me for the entire seventeen years.
“During those seventeen years, I became depressed twice. The first time was during those three years of not knowing what was happening. The second time was at the beginning of her dependent phase when I seemed to be assuming new duties constantly.
“In reading the journal that I had been keeping, I could see the frustrations that I experienced. Some time shortly after that, however, I began a major turnaround.
“Both of my parents had been raised on farms, and I inherited their strong farm-practical spiritual beliefs. Revisiting those beliefs through prayer allowed me to stop thinking of Alzheimer’s from my view and start looking at it from June’s view.
“I spent months writing what I imagined her thoughts to be. Then I prioritized those thoughts into a care philosophy that I called ‘care with dignity.’ Providing care with dignity was a major factor in my becoming a kinder, gentler, and more fully developed person.
“After caregiving, I spent two years leading an effort to bring more of the protection of the Chesapeake Bay Act to the streams in my county. After that, I used my journal as a basis of writing the multi-award winning book, Alzheimer’s Care with Dignity. I am currently leading an effort to improve road safety in my area. Looking to the future, I have taken a course on Lay Speaking, and have already given my first sermon.
“If I had a few thoughts to leave current caregivers, they would be these: Reconnect with your spiritual beliefs. Pray for the ability to reach deep within yourself and maximize the talents that you have. Have faith. You can become spiritually, mentally, and emotionally stronger as time goes on.”
Susan Solovic is a successful entrepreneur and caregiver for her aging father, a WWII veteran. Balancing the two roles is a challenge, but Susan says the time spent with her father is more than worth it:
“My husband and I have been caring for my dad for the past 4 years in my home. While it has been a challenge arranging our schedules to make sure he has what he needs, it has been a great experience, too.
“My mother and I were very close. I am an only child, and my dad and I never had much of a relationship. I knew he loved me, but the close relationship my mom and I had didn’t leave much room for Dad. Mom has been dead for over a decade.
“Since Dad moved in, we have had great conversations. I’ve really gotten to know him and learned a lot about his life. He’s a WWII veteran, and I never knew much about that. He’s funny, cute and a great guy. I’m really glad I’ve had this time and truly cherish it.
“As he gets weaker, I realize the time is limited, so I make sure to always carve out time to share with him rather than looking at it as an obligation or burden.
“He’ll be 87 on Wednesday this week.”
The act of caregiving can change your life forever. Such is the case for Cathlene Larson, a professional caregiver in New Hampshire who works with clients through Home Care Assistance. Cathlene received the Caregiver of the Month Award across the entire Home Care Assistance network in March of this year.
We asked Cathlene to share a few words about how caregiving has impacted her life and shaped who she is today:
Cathlene: “I truly believe that caregiving has helped shape who I have become as a person, as an adult. For me, there is nothing more rewarding, more personal, terrifying, humbling and awe inspiring than caring for another human being. I’ve had some of my most memorable experiences doing so.
“The people I have had the good fortune to work with have helped to teach me some of my best life lessons. They have taught me about patience, humility, to trust and to be trusted, to laugh (even at myself), to relish in life’s little triumphs, and to cherish even the smallest of things, for they are what make up life.
“I have been shown love and compassion and even been given advice by clients on days when pain and illness should have been all-consuming and I [should have been] the last thing on their minds, showing me the true testament of the human heart and spirit.
“I have been allowed to share and witness some of the best and worst days in a person’s life and, on a handful of occasions, the last moments of life—a true honor for me. In short, my work as a caregiver has helped me to see our humanity in all its forms and taught me to treasure them all.”
Thanks, Cathlene! And thanks for making a difference in your work!
Thanks to Terri Corcoran, a full-time caregiver and public relations chair for Well Spouse™ Association, for these tips on finding joy and support in the stresses of caring for a loved one.
I find the support I need primarily from God Whom I have learned to depend on, by virtue of being in this very difficult caregiving situation. I also get support from the Well Spouse Assn., which provides emotional support and resources for spousal caregivers; I am very active in this wonderful, unique organization.
What brings me joy is any step my ill husband can take or any word he can say (he is very disabled physically and cognitively by FXTAS, a genetic neurodegenerative condition which he has had for practically our whole 12 year marriage thus far – still going).
I am also very happy that I have cared for him at home, where he is happy and comfortable and very peaceful. I have kept him in as good general health as possible. As I look back over the very difficult years, I feel great that I have been able to give him so much love and care – and he still loves me too!
The biggest obstacles are of course my husband’s extreme disabilities – he needs help with all activities of daily living. I have home health aides 10-11 hours each day to help get him around, feed him, shower him, and stay with him when I go out.
Having to depend on aides who need lots of training and who come in all different levels of competence is probably the most difficult part of my job.