Caring for someone who has Alzheimer’s disease or a related dementia is often compared to running a marathon. If we were really going to run a marathon, what would we do? We would probably find other runners, other people with whom we could train. We would definitely train. We wouldn’t just show up the day of the marathon and expect to run 26 miles. We might even hire a fitness trainer to help get us in shape – especially if this is our first marathon. We would make sure we had good shoes and proper running gear. And finally, on the day of the marathon, we would bring along our cheering section to give us morale support and cheer us on.
Perhaps these are good strategies. As caregivers, it’s helpful to find other caregivers who been down this road before. Or caregivers who are in the same shape and have similar needs, people like us. A support group could be like the local running team that makes us feel like we a part of a group, that we are not alone.
A personal trainer is an excellent idea. For a marathon, the trainer knows the secrets to help the runner get in the best shape most efficiently. The caregiving version of this is a geriatric care manager. If I was going to splurge on anything, it would be for a geriatric care manager. They know the ropes and the resources. They are an outside party that doesn’t have the emotional baggage. They can help with family members – to be that independent person who can say things we couldn’t. But most importantly, they can get us on track much faster than we could ever do by ourselves. They are here for us; they’re on our team.
In caregiving, we can’t always see the course we have to run in front of us. We need the right gear just in case. This means the right information, because Information really is power. So we need to know something about the progression of the disease or disability, treatment options, warning signs, etc. It also means taking classes that can help give us better coping skills like the Stress-busting Program for Family Caregivers or Powerful Tools for Caregivers. It means that we need to get a good night’s rest more than every once in awhile. There is an increasing body of research that shows the huge negative impact of not getting enough sleep. It means that we have to take care of our health, not just our loved one. We’re not going to finish the marathon if we aren’t healthy.
Finally, we need that cheering section. We need friends or family who will tell us that we’re doing a good job – that we can make it. We need people who will celebrate our successes – even if the success is that things haven’t gotten any worse, or they’ve gotten worse but we’re managing. They will give us a drink of water and a little treat when we need some energy to carry on. These might be people who don’t know us that well but work in community agencies or people at our churches. The cheering crowd inspires the marathon runner and keeps them from giving up.
At the end of the day, people who do run marathons often say they did it for themselves. They trained and worked through the pain, not to win, but just to finish the marathon. It is something inside them. Caregiving is like that. When we cross the finish line, it was because it was something that we needed to do or wanted to do. With the right preparation and support, we can cross that line with head held high knowing we did the best we could.