3 posts tagged “Caregiving”

“Hope makes us strong.” – An interview with ALS caregiver Cathy

Posted February 12th, 2016 by

Meet Cathy (Catrin), who became a caregiver for her husband after he was diagnosed with bulbar onset ALS in January of 2015. As she learns to manage the dual roles of wife and caregiver, she has turned to the PatientsLikeMe community for help, encouragement and hope.

We took time to connect with her recently and this is what we learned… 

Tell us a bit about your life. How has it changed in the year since your husband’s diagnosis of ALS?

Living in suburban Nashville, my husband and I were enjoying his retirement. A former journalist and Corporate Communications Executive, we were busy keeping tabs on our family. One son living in our area, one son finishing college in Michigan and a daughter in Chicago. Before the diagnosis, we loved to take road trips. Before the diagnosis my husband loved to cook, he loved sitting on the patio, talking, drinking a beer and he loved to talk. His stories were endless. Being married to him for many years, I would, at times, roll my eyes. I had heard those stories many times before. But I loved them, nonetheless. Now, in the year since the diagnosis, we have all the kids back in Nashville. After learning their Dad was living with ALS, the kids packed their bags and moved home. We don’t take road trips anymore. His head drop makes travel uncomfortable. I am now learning to cook, hubby doesn’t eat anymore. We sit on the patio, but there is no beer. He still tells his stories, a bit, the text to speech “representative” tells them for him. I don’t roll my eyes anymore when I hear them. Now, I close my eyes and listen.

You’re new to being a caregiver. What is the most challenging thing about it?

Because I am a caregiver for my husband, the biggest challenge for me is knowing when to be caregiver and when to be a wife. As a caregiver, I am nurse, doctor, advocate, responsible for sussing out what is medically necessary and educating myself to gain an understanding of what is to come. As a caregiver, I have to administer tough love. As a wife, I just want to give him comfort and smother him in love. I want to magically cure him and have him back as he was. Since the caregiver understands that is not going to happen, I am slowly learning to merge the two roles.

What part of it do you enjoy or find rewarding?

I enjoy being an advocate. I truly and deeply believe a change is near for the ALS community. We must keep the momentum going. What is rewarding are the simple pleasures. A thank you from my husband for a back scratch, a hug from my kids … just because. A movie night with my friends or an encouraging word from a PLM friend. ALS has made me realize that the little moments of life are the rewards that matter (though a nice bottle of wine would be rewarding in itself).

You mention that your best friend has been a caregiver for both of her parents. Did that friendship in any way prepare you for your new role? If so, how?

My best friend has taught me love, patience, humor and perseverance. Watching her be a caregiver for her father with COPD (he passed away last May) and her mother with Alzheimer’s inspires me daily. She has shown me the wisdom of daily affirmations and how to find a quiet peace for my troubled soul. She is my hero. I don’t know what I would be without her.

What advice would you give to someone who has just become a caregiver for an ALS patient? Do you have any best practices yet to share?

My best advice would be to educate yourself. Read, learn, then learn some more. Do not rely on the medical community. Though your doctor may be brilliant, day-to-day management of this disease will be left to you. There are no easy answers. How ALS “behaves” for my husband is not how ALS will behave for you.  My best practices are maintaining humor. Keep your “patient” laughing as best you can. Many times my silly antics (disco lunchtime – complete with dance) have kept my husband from the depths of depression. Remind them that they are still a vital part of your life and your world will always and forever need them.

You often use the word “hope” in your posts. Like “Hope needs another cup of coffee,” “Hope loves tradition,” “Hope has more shopping.” Is this kind of like a personal mantra for you? 

Hope is, indeed, my mantra. I hold hope in high regard and expect those around my husband to subscribe to it. Without hope, we have nothing to hold on to. Hope makes us strong and keeps us stronger. Hope is the essence of life and our best defense. Hope knows ALS will be defeated. Our time has come.

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Natalie shares her story as caregiver for her mother with Alzheimer’s disease

Posted November 21st, 2015 by

Natalie (center) with her mother, Maxine (left) and her mother-in-law, Pam (right).

When was your mom diagnosed with early-onset Alzheimer’s disease? What was your mom’s diagnosis process like for you, for your mom, and for the rest of your family and friends?

My mother, Maxine, was diagnosed with early-onset Alzheimer’s disease in April of 2010. She had been living on her own for about one year, following her separation from my father. We both started noticing drastic changes in her attention to detail, motivation to work, cleanliness of her home, etc. and were concerned for her well-being. It wasn’t until she started not answering her phone that we insisted on a change. She simply didn’t want to speak to anyone, because she herself couldn’t understand the changes going on with her mentally, and wouldn’t know how to explain herself. For outsiders, it looked like disinterest, depression and laziness. For myself and my father, we knew something larger was the problem.

What is one thing you learned about yourself as a caregiver for your mom? 

Caring for my mom has taught me so much – and hindsight is 20/20. However, I have found that my resiliency, despite challenging situations, is far stronger than I have ever given myself credit for. When people ask ‘how did you do it?’ I simply reply with the most honest answer I can – There was no other option.

How long and how often were you caring for your mom?

When my mother was diagnosed, the legal implications of her inability to care for herself came to light. Since her and my father were divorced, the State of New Hampshire would have taken control over her finances, healthcare decisions, etc., had there been no one else deemed a responsible party. And at age 20, I was not the ideal candidate. However the thought of the alternative was not something I could bear. Court appointments and legal requests for guardianship took months. When I was finally named her legal guardian, I took on a larger role in her care than I had expected (but was committed to fulfilling as long as I was needed). Additionally, I was her secondary caretaker, traveling from Boston to New Hampshire every weekend on Saturday mornings and returning back to the city on Sunday nights. I cooked, grocery shopped, cleaned the house, did laundry, refilled her medications, paid bills and made sure the caregiver schedule for the following week was set. It was a routine that was well-oiled, but didn’t leave a ton time for the typical weekend ‘R&R.’

How did you balance being a caregiver for your mom with other obligations (work, relationships, planning your wedding, etc.?)

At the time of my mom’s diagnosis and while we moved her back into the home I grew up in, I was an undergraduate at Northeastern University. I would travel back and forth from the city to the coast of New Hampshire to be with her and relieve my father and the other caregivers each weekend. Meanwhile, I was a live-in nanny for a family of three, whom I would care for during the week when I wasn’t at class. I also was just starting a new relationship with my now husband. For the next few years, that was my life. I spent more time in my car than I did in my bed. And while my friends were partying each weekend, I just simply wasn’t around. My priorities were so far removed from those of my age, and I was okay with that. After I graduated and started working full-time, her disease was quickly progressing. Instead of spending Friday nights with my boyfriend (at the time), he would come home with me and help. Once we were engaged, we knew we wanted to move quickly in hopes that she could see me get married. That was the light at the end of the tunnel.

Throughout your mom’s illness, what moment stands out to you most?

Natalie’s mother, Maxine.

A goal that was shared by my father and I was singular and authentic – we wanted to keep mom at home for as long as we were financially and physically able to. Luckily, we spent her money right and found so many helpful resources that were available to us – like the Rockingham VNA and Hospice. Despite her illness, my mom was never without someone by her side that truly loved her – a luxury that many others in a similar situation aren’t privy to. We are so grateful we were able to achieve that goal and to care for my mother at home, even until the day she passed. Selfishly, the moment I remember most vividly in my mind was having her at my wedding, just a month and a half before she passed away. That memory stays with me, and reminds me of something truly magical, even on my most difficult days.

What advice would you give to other caregivers trying to take care of a parent or loved one?

Don’t try to do it all on your own. You will reach a breaking point, and you won’t have the energy to pull yourself back together. Ask friends and other family for help. Have someone come over to relieve you for a few hours so you can shower without worrying the house will catch on fire (yes, I’m not kidding – things like this fall by the wayside). Be honest with others about your situation, because more often than not, they would love nothing more than to help.

If you’re caring for someone living with a chronic condition, you can connect with others who understand what you’re going through on PatientsLikeMe. You can also connect with others in the growing Alzheimer’s community on PatientsLikeMe.

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