Leading with Love: Don’t Forget, It is a Struggle

 The stressors and pain involved in a diagnosis of Alzheimer’s and other forms of dementia are far reaching. For those who suffer from the effects, the world slowly peels away from them in small pieces until it all becomes unfamiliar and difficult to manage in a variety of ways. But one thing that cannot be overstated is the stress and toll that dementia can have on the family members and loved ones of the person who is suffering from cognitive impairment and memory loss.

This is a story I am intimately familiar with. When my grandmother-in-law, Grandma Lilly, started to show symptoms of dementia, it changed a lot for our family. In the sense of dealing with the disease, you begin to see behaviors change. Grandma Lilly was an extremely graceful and poised woman whom I had always admired. But slowly, I started to watch as she became easily frustrated and angry more often. I watched as the trust between her and the family began to erode because of her memory. Simple conversations about whether she had taken her medications or not could turn into tense conversations in which Grandma would yell and make accusations. It was difficult to watch as dementia took away Grandma’s ability to be the woman she had always been. 

As Grandma’s health deteriorated, we also felt the fatigue and stress of caring for her on a regular basis. Taking care of a loved one with any terminal illness is difficult. With dementia, it can be even more draining from the need to keep a strict schedule. Grandma needed more than just medications at certain times. We had to keep her on track throughout her day to avoid emotional outbursts and confusion. Keeping her on a schedule of when she woke, when  she got dressed, when she ate, when she walked around, and when she slept was so important in keeping Grandma calm and relaxed throughout her day. Often, her worst days came when we had struggled in keeping to the schedule she needed. Maybe we didn’t get her dressed for the day until later. Maybe we got her breakfast a little later than usual and it threw off when she was ready to eat. No matter what, the small details always mattered, and when we became stressed and slipped in the schedule, the emotional toll became palpable. 

It is ok to admit that it is hard. It is ok to need a break. It is ok to take care of you.

No matter how hard we tried to keep on top of everything, there were always going to be times where it didn’t work. The holiday season was always tough with different faces coming through the house and schedules constantly changing. Everyone’s schedule gets thrown off during holiday seasons, but it was always going to hit Grandma the hardest. Even when everything went right, Grandma would wake up at 3 AM and scream up the stairs that it was time to wake up. She was insistent that it was morning, which would inevitably lead to screaming from upstairs that Grandma was wrong and Grandma screaming that it was still time to get up (a story many of you can relate to, I’m sure). Sleep deprivation and the stress of confronting Grandma was one of the most difficult parts of getting through it all.

One of the more difficult parts we witnessed was Grandma not remembering various family members and friends. I cannot imagine the pain each of them felt when we brought them inside and Grandma innocently responded, “Who?” Then we try to remind her by highlighting  various moments when they were together and tried so hard to bring the memories back, but often, it didn’t work. The stress and pain of a loved one no longer recognizing you is one of the hardest realities of dementia and one that was extremely difficult to watch.

For family caregivers, it is difficult to admit the stress that comes with caring for a loved one with dementia. No one wants to feel like they are complaining about taking care of those who cared for us. No one wants to look weak during this struggle. But it is important to remember that all of this is a struggle. It is stressful and difficult to get through every day. We can be proud and strong and stressed and tired all at the same time and still be good people and good caregivers. It is ok to admit that it is hard. It’s ok to need a break. It’s ok to take care of you sometimes. My family was lucky in that we had four generations, including Grandma, living under one roof. We had plenty of back up ready to step in and help. I know that others are not always so lucky to have an entire crew ready to care and give. For those of you capable and with the resources to care for your loved one, congratulations and I wish you the best. For those of you that need some more help, Kemper House Central Ohio is here for you. We know how hard this is because we have lived through it. We want to bring that same level of care and compassion to those that need it.  

Let me leave you with a short story about Grandma. Some nights around Grandma’s bedtime, my daughter and I would be watching TV in the living room. We would have the blanket over our laps and just spend some quality time together. Every once in a while, you would hear the clicking sound of Grandma’s cane coming down the hall. We knew she was coming to check if anyone was in the living room and if she saw us, she would start talking and definitely be difficult to get back into bed. So, my daughter and I would cover ourselves with the blanket before Grandma could make it to the doorway. She’d look around the dark room and ask if anyone was there. And after a few minutes, she would walk back to her room without a fuss. My daughter and I would smile and giggle under those blankets together until we heard Grandma walk away. At first glance, it might seem cruel or mean. But honestly, Grandma didn’t need to be riled up just before her bedtime and my daughter and I needed that time to decompress together. If we were going to care for Grandma the way we wanted to, we had to be at our best and that means taking some moments that could be just for us. 

If you are taking care of a loved one, know that you are not alone. Millions of Americans choose to take care of a loved one and take on that burden. You are not alone in being stressed and tired. But if you ever get to a point where it is too much, there is no shame in that. And Kemper House Central Ohio will be here to help with our daycare and full-time services. I believe in caring for our residents the way my family cared for Grandma and we won’t let anything stop us from achieving that level of care.