Written by Trish Hughes Kreis and posted on her website, October 9, 2016 (9:13am PST) http://www.robertssister.com. Please take the time to read it and learn more about my amazing brother-in-law Robert.
After eight years of caring for Robert, he continues to surprise me. First of all, he hasn’t been hospitalized for two years! He’s been to the ER for seizure clusters that wouldn’t respond to the Ativan but no hospitalizations for pneumonia. He had pneumonia a year and a half ago but we were able to treat him at home with the guidance of his pulmonary doctor. That has to be some sort of record for Robert!
Robert enjoying the day
(Everyone please take a minute and knock on wood! I hope I didn’t just jinx us!)
We have fallen into a steady routine that seems to work for all of us. Richard and I realize that regular respite is just not possible for Robert. While Robert may be doing well, he still requires a great deal of personal care and help. Plus, he mainly moves around in a wheelchair although at home we have him use the walker to keep his legs as strong as possible. We have been told that respite homes prefer women who are mobile and that it is very difficult to find respite for a man in a wheelchair, especially one requiring the level of care Robert needs.
Okay, that’s fine. We work around that and create our own respite weekends when needed. Robert’s schedule also allows Richard and I to have some free time for which we are extremely grateful. Robert goes to a day program that he loves, has many friends and an outstanding staff. He sleeps in most weekends which allows Richard and I time to walk the dogs around the front of our house or do yard work or work on our books for caregivers.
Robert has lived with us for three and a half years which is far longer than I ever expected but it is working out well for all of us.
Robert is not only fairly healthy but he is extremely happy. In fact, he now says he is not only excellent but doing “excellently great.”
I don’t know how many more superlatives he can come up with!
For special events, we do change up the schedule. We usually let Robert sleep in as late as he likes on the weekends since he has to wake up so early on the weekdays. One recent Saturday we woke him up very early (as in, earlier than he even has to get up for program!) and took him with us to the Walk to End Alzheimer’s.
Richard and Rachel registering walkers
My legal management group volunteered to help with the registration table for the second year in a row and this year we took Robert. Richard stayed home with him last year since he was recovering from a seizure cluster but this year we all went!
We loaded Robert into the car, picked up Rachel and stopped by Starbucks to get some coffee and a breakfast sandwich for Robert. He had food, his jacket, a blanket and his puzzle book. Plus, I promised him a chocolate shake later in the day so he was more than willing to go!
Volunteering at the Walk to End Alzheimer’s is not only fulfilling and heartwarming but also a great deal of fun. Everyone at the walk or helping at the registration tables are impacted in some way by Alzheimer’s or other dementias. It is both astounding and overwhelming the number of people affected by this brutal disease.
Once the walk was over, my fellow volunteers wanted to meet Robert since most of them read about him and his “excellent” attitude. Robert, being the ham that he is, soaked up the attention. It didn’t hurt that they were all women since he is quite the ladies’ man.
We talked about that a bit and I even mentioned that when Richard and I brought snacks to his Day Program on his birthday, Robert had a lady friend holding his hand. Robert matter-of-factly explained that she was in love with him.
This led to follow-up questions from everyone and my comment of “don’t break her heart!” Robert, again in his “that’s just the way it is” way, explained, “She’s too young for me.”
Ouch! Poor thing. I hope he let her down easy but I suspect Robert told her just as he told us: bluntly and very straightforward. Robert doesn’t sugar-coat anything!
I love learning new things about Robert and delight in these stories of his. I am so grateful we did something different that Saturday, not only to help the Walk to End Alzheimer’s but also because I got to learn a little something new about Robert’s social life.
It makes me so happy to know Robert has friends at day program and even has a bit of romance in his life. I told you, he is a ladies’ man!
Special note: Richard will be participating in the Walk to End Alzheimer’s in Huntington Beach as we will be in Southern California for Epilepsy Awareness Day at Disneyland the same week. Richard participates in the walk to support our friends Gincy and Steve Heins as Steve was diagnosed with early onset Mild Cognitive Impairment. Please visit Richard’s walk page if you are interested in donating. Thank you!