The 2015-2016 Team of Advisors recently introduced the Partnership Principles. They’ve been sharing personal stories about these principles in action to kick-off conversations on partnering with all sorts of people — medical students, clinical trial coordinators, and “normals.” Today, Team of Advisors member Gus along with his wife and caregiver, Maria, share about their special relationship and how they work together as a team.
How has it been managing your dual roles of husband/wife and now patient/caregiver? What is the biggest challenge in this?
Gus: I believe the hardest thing has been always feeling I was in control and didn’t need anyone’s help or assistance. But how the tables have turned, I lean on my wife more than ever before, with the understanding I try every day to be as independent as possible. I truly see how tired my wife gets and how frustrated this illness has made her feel. I respect her time and appreciate everything she does for me. I sometimes push her towards taking a time out and spending time for her. She needs time for herself and to unwind from all of this.
The listening part sometimes gets very difficult, because I see things and don’t communicate them correctly. It’s so difficult and so frustrating because I just want to get up and fix it. I feel like things are getting better, I try so hard to shut my mouth and then listen.
I sometimes feel bad because I want or need help but I don’t want to bother or ask for it. She will always ask me if I need help and I just say no. I feel bothered inside and hurt because she only wants to help me. But I’m working on it every day.
Maria: Gus and I have always worked together. He always tried to make life as comfortable as possible for us all these years. Other than my continuing to work full-time and having to make sure that he has all he needs, my biggest challenge is making sure Gus is getting the proper nutrition and is made as comfortable as possible so that I don’t have to worry too much about him while I’m at work.
What are some new things you’ve learned about each other throughout this?
Maria: Gus is probably impressed with how I’m slowly becoming more patient. Since he has always been the more patient and nurturing one, I am now somehow finding myself being more like him. And I continue to be amazed by his spirit. Even after such a devastating diagnosis as ALS, he was only down temporarily. Although he isn’t able to do very much physically, he continues to be the head and shoulders of our household. He keeps us going strong.
Can you describe the ways you partner? What works and what doesn’t?
Gus: Living on the same page of life, what does this mean? Having an understanding and knowing when to ask for help and doing the simplest things you can do.
Sharing responsibilities sometimes can be tricky. Our bodies may not function but our minds are just fine. Not making a mess and doing your best in every way possible. And no nagging, this is the worst thing possible. And don’t take her or him for granted because we need each other for support and good health. Counting your wins and telling yourself you got this. Sharing your positive thoughts and negative feelings when possible, not holding things inside. Sharing your wins and losses.
Communicating and openness in all ways will make things so much better. I tell my wife everything, good or bad I don’t have anyone else who understands me better than she does.
Maria: Currently I have just been going full speed ahead – on autopilot – dancing as fast as I can. There are a million things I could come up with but I haven’t yet figured out what works and what doesn’t – still trying. My only tip is to continue to stay as informed as possible regarding ALS research and things people have tried to live more comfortably with the disease. Also to help your partner have a better quality of life by trying to find things that will naturally relieve some of the discomfort brought on by ALS.
What’s the most important piece of advice you can give to other couples in your situation?
Gus: The first word that comes to mind is patience (and more patience). There are no right or wrong ways of doing things, it’s just how both of you react and what action or plans have been discussed. First comes the falling or not being able to use your hands or walking without use of a walker. It’s different for everyone, but the most important part of this process would be communicating and understanding each other’s feelings and how this illness will change everything. It’s hard, and very challenging for my wife, coming and going I can only imagine the feeling or heartache she endures. To have compassion and empathy really helps.
Maria: Stay optimistic – one never knows how ALS will progress. We have found that with the proper physical therapy and nutrition (Gus has chosen to go with massage therapy, acupuncture, and a gluten-free diet) he continues to get around using a walker. And if his swallowing or breathing starts to feel compromised, he lets his acupuncturist know and he’s good for a few days.
Final thoughts from Gus: Take every day step-by-step, don’t feel helpless or sadness, your attitude and thoughts create a better environment for both of you and your family. For me it’s called positive in and positive out, every word or action matters and your facial expression matters the most. You must become a good poker player, not showing what’s in your hand. Because when you show discomfort or anger your better half will feel like he or she is to blame. Yes, it’s tough and not easy, but what can you do, go with it and create the best situation possible.
It’s a fact we all struggle with something. No matter what the issues are, they’re important to us. Some of us may have financial debt issues, and others health concerns, and anything else you could think about. When you are ill, sometimes the solutions are a bit more challenging. And that’s where our partners and caregivers come in. The simplest things are now the hardest or a bit more challenging in completing our tasks. Some of us may not have partners or caregivers, so then what? How do we cope with the issues at hand, where do we go for help? Finding the answers to our questions sometimes may be difficult and strenuous. There are many sites and forums that can assist us like PatientsLikeMe, and other blogs sites associated with partners and caregivers.
Families may not have the resources available to them, finding the information provided will make a difference one patient at a time. Finding help and support is vital – every day someone requires assistance. I believe everyone deserves a helping hand when possible, no matter what. So when your loved one becomes ill and funds are low, they need a place and solutions to their questions and concerns. Sending them to a site may not be the answer, but speaking to them makes it better. Just having someone to listen and allowing them to vent their frustrations is so important. It’s our duty as civilized human beings. Giving back to those who can’t and providing the information is key.
Share this post on Twitter and help spread the word.