Being a caretaker can be one of the most rewarding experiences, and one of the most exhausting ones all at the same time. It is a labor of love and that can take the biggest toll on us as we let love, guilt, pride, frustration and compassion drive us. Furthermore, this drive often keeps us from seeing things in a realistic light. Caretakers generally have big hearts and make sacrifices on a daily basis to help those they care for. The needs of others come before their own. The payback is often minimal since the one(s) they are caring for need the care for reasons beyond their own control and most likely aren’t able to give back.
I’ll never forget the day I realized I was my mom’s caretaker. I was sitting with my mom during one of her appointments with a diabetic educator. My mom, a Type I diabetic, was starting to show signs of confusion and memory loss, especially when her blood glucose levels were off. I was there as an extra set of ears and nothing else. . . until, the diabetic educator looked me straight in the eye and said, “You do realize you are your mom’s primary caretaker, don’t you?” I was totally caught off guard. Me? Care for my mom? The one who had always been there for me since childhood? The one who got me through the troublesome teen-age years? The one who gave me guidance as I attended college and then began my teaching career? The one who helped me understand motherhood? I didn’t understand. I had always gone to my mom for advice. How could I be her caretaker and offer her advice? Our roles were reversing. The tables were slowly turning, whether either of us was ready for it or not, and neither one of us was prepared nor aware of it. She was my rock and when I realized my rock was crumbling, I felt frightened and alone.
In the early stages of my mom’s dementia, I was probably the one most in denial. I kept telling myself if I just got things right for her, everything would be “fine” and she would be right back to the person she was. Life threw some wicked curve balls at my mom and I was bound and determined to make it right for her. I fought long and hard to get medical equipment so I could help her manage her diabetes, thinking if I could just get her sugars regulated, everything would be “fine” again. My husband (my biggest rock, cheerleader, and supporter through all of this) and I bought her a house to take away the stress of being a homeowner and letting her treat it as her own while we took on the responsibility of the mundane parts of being a homeowner. I called her daily and stopped by frequently. Each time thinking if I could just fix one more thing for her, it would make things “fine.” I would crawl out of bed in the middle of the night and drive to town when I could see her blood sugars plummeting, grateful I had the means to see she needed help. I called an ambulance in the middle of the night once when I was out of town to go check on her when I couldn’t get a response from her but knew her blood sugars were falling to a drastically low level. I made lists for her reminding her what and when to eat in hopes that then everything would be “fine.” I went to her appointments with her and tried to listen to what the doctor was really saying so I could explain it to her later on when she got confused or got focused on the wrong thing. I took over all her financial medical bills and made the phone calls to medicare and the medical supply companies for her. I planned my runs so that I would run right by her house every morning and look to see that the lights were on and everything was “fine.” I would occasionally stop in and check on her, hoping it would make the day “fine.”
I soon found that every waking moment (and sometimes sleeping moments), was consumed with trying to make things “fine” for my mom. I was still trying to teach full time and be a mom to my own kids, but found the burden increasingly harder to bare. However, instead of looking for help, I just kept digging deeper and deeper trying to make things “fine.” I had this deep, internal drive and feeling that it was my responsibility to make everything “fine” for my mom. She had done so much for me and I wanted to do everything I could to bring her back to normal. Not fully understanding dementia or even recognizing that my mom possibly had dementia as well as Type I diabetes, I was becoming completely overwhelmed. My phone was by my side at all times and I often got calls from her during the school day or while having dinner or when out with friends because she couldn’t remember how to do something, or a problem or question was on her mind that she couldn’t resolve, or she forgot she had already called me. I was doing it out of a tremendous love and respect I have for my mom and to pay back a little of what she had done for me as my mom. What I didn’t see is that the labor of love was slowly becoming a labor of self-deprivation and my feelings towards my mom were changing. I hated it. I didn’t want to feel that way, but didn’t know what else to do. I kept pushing on thinking that my attitude just stunk and I needed to work harder, then I would feel better.
I remember a particularly difficult day, just months before my mom would be officially diagnosed with dementia, I was near tears, wondering how I could get a handle on everything. My mom had a case manager and he was amazing! I fired off an email to him thinking it must be the medical team’s fault that all of this was happening because I was doing everything I possibly could and things were still falling down around me. He passed my email on to my mom’s doc who called me that very night – a call I will never forget. As we started to talk, the tears flowed. I felt like I had totally lost control and was letting my mom down. I felt like a failure. Then he said, “You need to know that your mom is not doing this to you. She doesn’t know what she is doing.” That was a revolutionary moment for me. I felt less responsible for how things were going knowing that her actions weren’t a result of anything I was doing. She wasn’t acting like she was out of stubbornness or unwillingness to be cooperative. She didn’t even KNOW what she was doing. In her mind, everything WAS normal. It changed my outlook and was the beginning of my road to taking better care of ME.
Shortly after this, several hospitalizations in a row led to mom’s medical team giving us no choice but to put her in assisted living. It was still a rough and emotional road for several months, but then I started to feel a little lighter, a little more content. My attitude towards my mom returned to the love and admiration I have always had for her. I can call her and talk without feeling like I need to fix everything. I found an incredible resource on line in the Alzheimer’s Association website and started to learn more about the disease and how it is affecting my mom. It’s still not easy, but changing my perspective has taken away the feeling of hopelessness, helplessness, and feeling like I was letting my mom down. Recognizing dementia as a disease and not letting it define my mom has brought me a whole new appreciation for her.
This is just my journey. There are so many others on similar journeys. So, who are they? Caretakers can include parents caring for littles, spouses caring for their husband or wife, adult children caring for parents, and so many more. There is no finite definition, but the needs of the caretaker are often the same. For me, this was a slow and lonely road, and it wasn’t until some drastic measures were taken that I realized how consumed I had become in my role as a caretaker. I thought I could do it all. And I did, for awhile. But the toll was heavy. I learned a lot about myself, though, and about self-care.
Here are a few SIMPLE lessons I learned being a caretaker:
- Take time for yourself without guilt. This is one of the hardest things for a caretaker to do. We assume that any time we take for ourselves is selfish. We should be caring for the one who needs us. If we don’t care for them, who will? It could be as little as 10 minutes. If taking time for yourself all at once isn’t possible, try several small segments throughout the day. Set time aside to meditate, pray, read, journal, close your eyes, whatever it takes to recharge. Three 10 minute breaks for yourself over a day can add up and become very helpful during a week.
- Learn more about what you’re dealing with. Whether it’s being a mom to littles or caring for someone with other health issues, understanding where they are at in their development or the disease or disability can help us feel more empathy and compassion which makes any task easier. Once I learned more about dementia and saw things through my mom’s lens, I had a totally different attitude towards caring for her. She was in a scary place herself and probably didn’t know what was happening.
- Take a step back from the situation. The deeper I went into trying to fix the situation, the worse it became. When I was able to step back and see the situation from further away, it helped me realize I didn’t have as much control over things as I thought I did.
- Find a support group. When we can talk to those who are going through similar situations, it helps us not feel so alone. Once I found a forum on-line with stories of others also dealing with dementia, I realized I wasn’t alone. Knowing others were going through the same thing is such a relief. It also helps us realize we aren’t “causing” this to happen. It is a disease that we have no control over.
- Exercise. Always. Never give this up. There are so many benefits for the mind and body that you don’t want to miss out on. Again, even if it’s 10 minute increments throughout the day, doing something is better than nothing. Walking one mile is better than no mile.
- Seek counseling or find someone to talk to. We may have all the tools is our toolbag to deal with the situation, but sometimes we become so overwhelmed with all that is going on, we forget about our tools. It’s okay to talk to someone to help us see our part in the picture and remind us how to prioritize and utilize the skills we have. Also, admitting when we don’t have the tools is okay, too! In fact, it will lessen the burden when we acknowledge our own limitations.
Resources:
https://www.caregiver.org/taking-care-you-self-care-family-caregivers