November is National Family Caregivers month. While we are focused on supporting every member of our ALS Texas family throughout the year, this month allows us an opportunity to host some extra special events for family members, and to remind everyone that caregiving should be a team approach, with your loved one who is living with ALS leading the charge.
PRE-GAME PREP: It is important to ask your loved one HOW they want to live, and if you can agree on an overarching goal, your strategy along the way will be a little easier to figure out. Like any winning team, you must know your strengths, and also be keenly aware of what you are up against.
When caregiving becomes a priority, relationships can suffer. Caregiving can be especially challenging for someone who also experiences a role change from adult child to caregiver, or spouse to caregiver. No matter how close you are with your partner, spouse, siblings, or children, conflicts can and will arise. Complicating matters, “parents often have preferences for which child will be their primary caregiver that may stir up resentments with siblings,” says Barry Jacobs, a clinical psychologist, health care consultant and AARP Caregiving Consultant. “How you behave with one another can affect your sibling relationships for the rest of your lives,” he observes. “When you pull together and work together, it can strengthen the relationship. When you don’t, it can weaken the relationship.”
Caregiving Corner.com shares that today, “Gen X and millennials may be doubly stressed because they are often in the sandwich generation- Caring for parents and their own children.” To help navigate these waters, Millennials and Gen Xers are using strategies that might benefit family caregivers of all ages. “One of their strengths is spreading the workload. A recent report shows that millennial and Gen X family members use technology to support their caregiving. They also embrace more of a team approach than their older caregiving peers do.”
Think of your Caregiving Team as the Houston Astros or Texas Rangers baseball clubs. Your loved one is the coach – calling the shots. As the primary caregiver, you are the pitcher (1) in charge of the rest of the team! Now think about the people you rely on the most or those on whom you can easily call- family members, close friends, church members. Those individuals are your infielders. (2 – catcher, 3 – first base, 4 – second base, 6 – short stop, 5 – third base). Outfielders are those who may live far away and/or can help only occasionally (7 – left outfielder, 8 – 9 – center outfielders, 10 – right outfielder). Some examples could include family members that live out of town, neighbors, your loved one’s primary care physician, local community resources…and ALS Texas!
Remember, every team has players on the bench and ready to go in a pinch, so it’s good to have a list of a few alternates- but you must ASK for the help. Often, friends and family want to help, they just don’t know how. This can be difficult for the primary caregiver, especially if their loved one is resistant to others joining the care team. This is the time for you to tell the Coach what you need; what the team needs to be successful. Even All-Star players need rest and days off.
When building your team, consider which team player is best suited to which responsibilities, based on abilities, financial resources, proximity to you and your loved one, time availability and other key factors.
Don’t forget the big picture; caregiving can be a long season.
- Watch for the signs. As a primary caregiver, your self-care is also a high priority. You can’t care for your loved one if you are not taking care of yourself. Know your limits, and your self-care warning signs. The same is true for your loved one living with ALS. On a stress scale of 1-10, what does a “5” look like for each of you? Where are you today?
- It takes the entire team! It’s not just the day- to-day caregiving responsibilities that need teamwork, but also things like yard work, picking up groceries, house cleaning. Who can help in these areas?
- Pinch hit. Life happens! Who are your back- ups ready to play?
- Days off. Primary caregivers need time off—to preserve marital harmony or simply re-center. Can you visit other family members? Or could other family members chip in to treat you to an afternoon or evening out?
- Gifts and talents come in many different forms. It can be financial, physical, or emotional. One person may have less time but more money. Identify your team’s talent, and then build a strong and diverse team.
Think PPF: ask your team to be Patient, Positive and Flexible and have them encourage the same in you.
Tonya Hitschmann, Director of Community Programs
From those living with ALS to their caregivers, to their children, grandchildren, and everyone in between, every member of every ALS family needs a hand to hold as they walk along the ALS journey.
ALS Texas is here to support your emotional needs on the ALS journey, but it all starts with you. Those living with ALS and caring for those living with ALS have the most wisdom to pass to others who will experience this disease. Take it from ALS family, Mike & Mary Busch, who shared, “When you get further into the journey, you realize you have valuable experience that you can share with others.”
In January 2019, after a year of doctor’s appointments, increased symptoms, referrals and second opinions, Jack Mercz was diagnosed with ALS at the age of 53. In a recent ALS Texas interview with his widow Jennifer Mercz, Jennifer shared “our whole relationship pretty much changed in a day.” Jennifer and Jack had a then two-year old son, and Jennifer added, “I had been with my husband for 10 years and suddenly found myself not only caring for my husband but also my young child.” She recalled moments that included putting her son in the bath and helping her husband in the shower at the same time, and at the end of the day being too tired to even take a shower herself.
Jennifer shared that Jack was not very accepting of any kind of help; he wanted to be stronger in every way and help Jennifer at home when he was not traveling for work. Frustration over his declining physical abilities and strength led to anger and depression and Jennifer shared that she “became very standoffish emotionally-clinical with him.” While Jennifer did reach out to ALS Texas and the community as much as she could, she added that “things were moving so quickly that I didn’t seem to have time” to do more-such as accessing our ALS Texas equipment loan program sooner. “The ALS Association delivered a Hoyer lift to our home-it was great, and we needed it. Jack was able to get up (after weeks of being in bed) and sit on the couch with our son.” He told me that he wished we would have had that [Hoyer lift} earlier. In retrospect, she added that she would do things differently in making some “executive decisions” about Jack’s needs; equipment and care that would have also benefitted her. She urges all family caregivers to seek help with caregiving if at all possible-from anyone who is able to help, including friends and family members, and when someone says, “Hey, do you need help?” the answer is “YES! Here’s how you can help me.”
