Earlier this month, I walked outside to find what looked like a four-headed cat sitting on our front porch. It made me laugh out loud, so of course I took a picture. The image seemed appropriate in illustrating how a group might work together for a common goal. Note that the largest cat is not from the same family as the other three, and yet is still contributing to the overall function and warmth of the group.
Just before Christmas, we started interviewing to find an outside helper for Mom. This is a big shift for any family caring for an ill adult, assuming they desire and can afford to pay for help in the first place. My mom is fiercely independent, having proudly worked our farm and trained 1100 lb horses before multiple system atrophy came into our lives. Currently, we are living there together, high above the snow line and far away from other people. So it takes time to accept the fact that we need help.
I've been reflecting on the challenges and benefits of getting good home care arranged, and thought it a good subject for this post. These are my observations of our situation, but I suspect they are true for others as well. If you are not in this situation right now, you may know others who are, or may find yourself in the future. Hopefully, this post can help you understand why it can be so difficult, but is also so important, for caregivers to acknowledge when we need outside help.
First of all, we as caregivers have to accept that we need help, and that it has nothing to do with how strong we are or how much we love the person we care for. There simply comes a point when our loved one’s needs go beyond what we can safely and healthily provide alone. For those of us who are not used to failure or fear, this is an incredibly hard and frightening thing to admit. It means we really are not in control, and we usually prefer the illusion that we are. It can be difficult to get to this acceptance before a crisis hits, but it is absolutely preferable to do so.
We may feel selfish asking for help, especially if it is "just" so that we can maintain our own physical and mental health. Even though I know the importance of getting help, I still find myself wondering sometimes why I should feel like I "need" time to play or travel or rest, when my Mom has so many more basic needs that she can not control. But it is true what they say: if we do not care for ourselves first, we can not possibly care for others.
When I am well-rested and balanced, I smile more. I am more patient in helping Mom through her day, and I have the energy to go outside and to play with the dog, which makes both of us laugh. Mom's mood is generally positive, but there are subtle changes in her that reflect changes in my mood. I know she is happier when I am happy.
Another mental barrier to asking for help is that we worry that new people won’t provide care in the way that we would provide it, and that our family member will not get high quality care as a result. If we hire through an agency, we also worry about safety and quality of the care provided. But the reality is that with the right fit, Mom or any family member's care will be improved in numerous ways with outside help. Her caregivers will be happier and healthier, with more energy, patience and creativity. Outside helpers also bring fresh perspectives and ideas that can brighten up a prolonged routine of care.
Last week, I was pleasantly surprised to hear that Mom played Gin Rummy with one of our new helpers who took a cardboard box and cut slits in the top so it would hold the cards for Mom to look at. I was not surprised to hear that Mom won almost every game. Another day, I came downstairs to see Mom and a helper watching the Westminster dog show. And many days when we have a helper here, they go out to the barn, or just sit on the porch with Mom and chat.
Finally, the most important person who needs to accept when it's time for outside help is the recipient of that help. Mom, or any loved one in this situation, has to accept this change as she will be the most profoundly affected. It means allowing herself to be vulnerable with a stranger who may need to assist with the most intimate aspects of self care. A sick loved one ideally will give permission to the caregivers to let this happen so his or her family can take the needed time for their own self-care. This is one of the biggest powers that the sick person has. In most loving families, if the patient refuses to accept outside help, the family will limp along until it absolutely cannot any longer. Too often, this causes pain and suffering for all members involved.
During my medical training, I learned that caregivers who burn out are less likely to be able to continue providing care, so their loved ones are more likely to end up in a nursing home. This means that getting outside help is actually best for the care recipient as well as the caregiver (in fact arguably it is better for our health care system as well to avoid having more people in nursing homes, but that is a topic for another day). I felt this reality myself when I got overwhelmed and burnt out shortly after Pop had his surgery. I also learned in my training that overwhelmed caregivers have worse health outcomes than non-caregivers or caregivers who do not feel strained. This again underscores the importance of preventing and addressing burn out.
Learning to accept outside help is a gradual process for many. This does not have to be completed before we begin. In our case, we are starting with baby steps, having help just a few hours a day with some basic assistance. The plan is to increase time and tasks performed as we all get comfortable with the new situation.
We have been steadily working on the logistics. We found good people, and are working on ensuring safe medication distribution, paying for help, and arranging a good schedule. It is awkward and clumsy at times to work with new people in this way, but it's been good for all of us. Mom is doing things I would not have thought to do. And slowly, I am trying to adjust to being able to take a few hours for my own needs, or even occasionally, wants.
With the extra support we are putting into place, we will all have more freedom and pleasure in our lives. That means we will be more functional and energetic in navigating this challenge as a family. We still have a long way to go, but I am confident that we are heading in the right direction.