Caregiving and Purpose, At Just the Right Time

Robert is my youngest brother, is in his mid-40s and has lived with uncontrolled seizures his entire life. He is physically and cognitively disabled and seems to lose just a little bit more of something all the time.

What he hasn’t lost is his delight in beating me at his favorite card game, Kings Corners (if that ever changes, I know we’ve got serious problems). He can do word search puzzles for hours and his favorite television show is Jeopardy. Second favorite: Wheel of Fortune!

Robert was able to live independently for many years with only slight oversight from our family. I didn’t spend a great deal of time with him during this period because I was confident he was able to live on his own even though his seizures were never completely controlled. That didn’t bother him, though, and he never let seizures slow him down.

Robert was happy and I believed he was okay. Until it became apparent he wasn’t.

Several things happened to make me step in to take over his care completely and I will always wonder if I did so at the right time. Many caregivers struggle with knowing when it is the right time to take over care and many question if they stepped in too soon or too late.

When I stepped in to care for Robert, he was having recurring life-threatening infections so I thought I was stepping in too late. I placed him in a Skilled Nursing Facility while he was on several weeks of intravenous antibiotics and I was told by the facility Robert could not live on his own any longer.

At first, I thought they were crazy. They didn’t know my brother like I knew my brother. Sure, he has epilepsy and continued to have seizures and was a bit slow both physically and mentally but he was independent! He could live on his own! He goes to the store by himself for goodness sakes!

They don’t know what they’re talking about.

I was convinced he would go home once the infection cleared up until I spent a significant amount of time visiting Robert in the Skilled Facility.

My daily visits forced me to notice he ate like he was starving. He didn’t clean himself up properly and needed assistance. He regularly couldn’t make it to the bathroom in time yet didn’t even wear protective briefs. He didn’t look where he was going when he was walking and held onto walls to keep his balance. Getting him to use a walker was the first order of business. Buying him some protective briefs was the second.

I began to realize he was not taking care of himself on his own even with family occasionally checking in with him and his companion. Robert needed assistance with his daily living tasks.

This was such a difficult realization for me and it was very difficult for Robert as well. He wanted to live at his home with his companion. His home was more than an hour from mine and even further from our other brother. Our mom had passed away years earlier and our dad was sick and could no longer check on him frequently.

It was a gut-wrenching decision but I had to find him a place to live close to me so I could keep him healthy and happy. The infection almost killed him and I couldn’t let him get that sick again.

I had to take over his care. There was no denying it any longer.

Once he finally beat his infection, I found an Assisted Living Facility for him. It wasn’t the best fit so he now lives at a more age-appropriate Board and Care home and attends a wonderful Day Program where he enjoys activities like going to the park or the mall and watching movies with his friends. I’m not completely pleased with his Residential facility so I continue to look into making home renovations so he can live with me and my family.

Through the week, I have to do quite a bit of work with his care facility in order for him to get the best possible care (they apparently aren’t used to family involvement but I’m getting them acquainted with that reality). Robert stays at our house on the weekends which makes him very happy as he loves to be around family. Robert has an average of five seizures per week, wears a helmet and protective briefs at all times and uses a walker to get around. His balance is awful but the walker has saved him from numerous falls. He can’t remember what he had for lunch but he’ll tell you about his seizures as a young boy or his brain surgeries and what it was like to have seizures at school.

Robert’s faith never waivers and he never ceases to amaze me with his nightly prayer for his seizures to stop. Robert’s sense of humor keeps people smiling as he likes to joke about drinking whiskey or traveling to New York City (we live in California and, of course, he doesn’t drink).

Robert recently shared with me his belief that his purpose in life is to educate people about epilepsy. I’m happy to be his spokesperson so we can help others in caregiving situations and spread awareness and education about epilepsy. I write our stories at www.robertssister.com and can also be found on Facebook at www.facebook.com/robertssister and Twitter @robertssister1.

Although I may have struggled with knowing the right time to help Robert, I know in my heart I made the right decision to help him and can’t imagine doing anything else.

About Trish Hughes Kreis:

Trish Hughes Kreis is a freelance writer and full-time Legal Administrator who advocates on behalf of her disabled youngest brother, Robert, in order to keep him as healthy and happy as possible. Robert lives with intractable epilepsy and currently lives in a care facility. Robert is a man of faith and believes his life’s purpose is to spread awareness and education about epilepsy. Trish does what she can to help him fulfill that purpose while also navigating the maze of social services and government programs available to help him and keeping him entertained by being on the losing end of many card games. She is the author of her first caregiving book, Forever a Caregiver, and can be reached through her blog, Facebook, Twitter or emailed at robertssister@att.net.