Richard and I were talking recently about Robert and marveling at how he has lived with us for almost four years! When I first started caring for Robert it involved intervening when he had a serious infection and overseeing his care in the hospital, a Skilled Nursing Facility and an Assisted Living Facility.
|Carol, Robert and Trish at the Kreis Christmas|
At the risk of repeating myself, it never occurred to me that Robert would eventually live with us! I always thought that was either not needed or impossible for me to manage.
As it has turned out, it was both needed and possible.
While Richard and I marveled at this turn of events we also noted that Robert no longer has his angry outbursts either at home or at program. At the various facilities, Robert would act out by yelling or flailing his arm to stop someone from either helping or bothering him. There were the “recliner” episodes at his previous Day Program because there were a lot of people wanting to sit in the most comfortable recliner and, well, only one comfortable recliner.
Neither one of us could remember the last time Robert had an outburst. He has settled into a comfortable routine at home, enjoying his own bedroom and bathroom and not having to fend off other clients taking his stuff. Robert enjoys meals with family and can count on Rocky Road ice cream at least every other night. (Hey, I have to set some limits!)
|Robert's Christmas card to Richard|
Robert plays ball with the dogs, jokes with Richard and politely asks me how my day was immediately upon my return from work. It’s been months since paramedics have been called to our house and a couple of years since an overnight hospitalization.
I don’t want to boast but it seems living with us has been good for both his mental and physical well-being!
Having Robert live with us has been good for us as well. Richard feels caring for Robert gives him a purpose. Due to Richard’s back pain (and now vascular issues in his legs) he cannot have a “regular” job. However, Richard manages the household and cares for Robert when he gets home from program. They’ve developed a fond, brotherly relationship that is evident in their banter and which brings joy to my heart (when they are not driving me nuts with their silly jokes and teasing.)
This Christmas season has highlighted Robert’s fantastic attitude for me even more than usual and it delights me to share him with others. While caring for him is expensive, stressful and exhausting it is an experience that has enriched my life more than I could have imagined. Not just because of how his attitude directly impacts me and Richard but because I have seen the kids move from seeing Uncle Robert a few times a year when they were growing up and only having a vague understanding of his disability to developing a deeper understanding of what caregiving and being disabled is all about.
|Robert's version of picking a Christmas tree|
Heck, I’ve seen that in myself!
Robert loves to be involved in all the extended family activities and is content as long as there is food involved. Robert is game to getting a Christmas tree and going to family parties but his word search book is always close at hand.
Robert and his friends at Day Program also participate in an event each year to help raise money for the Make a Wish foundation. All they have to do is write a letter to Santa and then the letters are dropped into a special mailbox and Macy’s makes a donation to the Make a Wish program. The letters range from “Dear Santa, I would like a million dollars” to “Dear Santa, I would like a gift.”
|Robert's letter to Santa|
Robert and his friends may be disabled but they are kind enough to participate in an activity to help someone else. If that isn’t the spirit of Christmas, I don’t know what is.
Christmas may be over but what I have realized is that Robert has Christmas spirit all year long. I am grateful I didn’t listen to that voice in my head that said caring for Robert would be impossible. It is not only possible but it turns out that it was actually a gift.
Wishing everyone a year of gifts in unexpected places and lots of “excellent” Christmas spirit!
|Robert enjoying his Christmas Day gifts and family|