Last night, we treated Robert to a cheeseburger and fries. I figured since I had already slipped him vegetarian sausages and a fake burger over the weekend, I’d get him the real deal before he realized what I’d been feeding him.
Or passed out from meat withdrawal.
On my way out the door to the local fast food restaurant, Robert called out, “Can I get a chocolate shake, too?”
Hmm. Well, do you want a shake with your burger or a bowl of Rocky Road Ice Cream for dessert? You can’t have both (I’ve been down this road before and I’m on to him).
Robert gave me his best “I’m not going to say anything and will just stare at you hoping you’ll change your mind” stare.
While he mulled over his choices and I stood my ground, I thought about caregiving in general and how it is full of choices. All the time.
Caregivers make choices every day. Heck, sometimes choices even have to be made moment to moment. What briefs do I choose for Robert to keep him dry? Do we use the transport chair for an outing or let him use his walker? How can I satisfy his taste buds but keep him healthy? Do I follow him as he walks to the bathroom in case he has a seizure and I have to catch him or do I stop hovering and hope for the best?
Sometimes the choices are between living with dust bunnies or having a spotless house or deciding between cooking a great meal or running out for fast food. (It’s usually a toss up around here on both counts).
I had my own choices to make this weekend. Since I was feeling overwhelmed this week, Denise asked me if I could shorten Robert’s weekend visit. What if he came over for just one night instead of two or three?
For some reason, this option hadn’t occurred to me but just knowing I could make that choice made me feel better. I don’t have to be “all in” every weekend. Why not leave my options open? I knew I had several writing projects to work on and a couple to finish, I was feeling extremely disorganized and I needed some relaxation time, too.
I need to make some choices but I do have options (of course, some people have a different caregiving situation and do not have many options to choose from).
I asked New Home for enough meds for a three-day visit but told them I may bring Robert back early. I chose to pick up Robert later on Saturday than normal (which was made more challenging when he made the unusual move to call me that morning to ask if I could pick him up earlier than I had planned). I told him “no” and kept to my plan to pick him up later in the afternoon. He reluctantly accepted my answer but was perfectly happy when I arrived to pick him up.
As far as keeping the visit short, we chose to keep him at our house over the long weekend but it was nice having an option to cut the visit short.
I explained to Robert on Monday (I had the day off of work) that I had to work on my projects and he would have to watch television or work on his word search puzzle. Robert didn’t mind those options at all (he loves both activities) and was pleased just to be at our house surrounded by family and our animals that he’s come to enjoy.
In fact, Robert became so hooked on a “Bonanza” marathon he asked if he could eat the burger and fries in front of the TV! So much for my thinking he needs to be entertained.
As far as Robert’s choice: Once he realized I wasn’t going to change my mind, he chose Rocky Road Ice Cream for dessert.
Good choice. I went for Mint Chocolate Chip myself!








You are a disruptor. The delivery of health care starts with you, continues because of you, and ends with you. Let's disrupt together to make the world better for family caregivers. 




Jane
Trish:
Oh how I love your posts. I also gain something from them and you make me think of things I haven’t.
When you called in on one of the live shows you said something that really struck a chord with me. You said that you had got impatient and snippy with Robert and you felt bad because he never gets a break from his epilepsy and that made me think about Nicole. What right do I have to get mad/impatient with her when she is the one that is sick and she never gets a break from it.
I think sometimes I can’t get stuff done and I need to entertain Nicole but maybe I want her to entertain me if this makes sense. I guess I will ponder on this.
I hope Robert enjoyed his ice cream and you enjoyed yours.
Hugs:o)
Jane~mom to Nicole, 17 yo, VSD, PAH, Eisenmengers, BHJS
“If you don’t like something change it, if you can’t change it, change the way you think about it. “
Trish
Jane, I think that does make sense. I have a daughter, too, and love to spend time with her. Sometimes I don’t get my projects done because I’d rather hang out watching tv with her or going shoe shopping (it’s a sickness).
Give yourself a break, though, Jane. Nicole doesn’t get a break from her sickness but you don’t get a break from worrying about her or caring for her either. I definitely have to work on my impatience and am really going to examine that because I don’t like that part of me.
I like being on this learning journey together with you!
Kathy
YAY for Hamburgers AND ICE CREAM!!
I’m glad you realized Robert didn’t need entertaining.
He was just as happy and content being with you in your home
Ahhh the feeling of contentment.
You provide that so well Trish.
Trish
Thanks, Kathy. Robert is perfectly happy just hanging out at our house. He’s funny with the animals, too. Richard pointed out that he is our “animal alert notification system” — when the dogs want in or out, Robert is johnny on the spot letting us know. One time, I was running errands and Richard was in the garage or something. Our lab wanted in and so Robert let him in — after putting on his helmet and using his walker to get to the door. It was kind of an ordeal for him but he did it and was thrilled to tell Richard later that Oz wanted in so he let him in! I guess I don’t always have to do a song & dance & cook a 5 course meal (thank goodness!).
Denise
Hi–As I read your post, I realized: When we know we have choices and options, then we can be flexible and forgiving of ourselves during our day. If we’re having a tough day, then we know we can change a schedule that will help us. If a caree is having a bad day, then we know we can adjust a routine that will help him or her. It’s all because we know we have choices and options.
Isn’t it nice to know that Robert isn’t a guest to be entertained but a member of the household who just likes to be?
Trish
Ahh! Great insight, Denise. It is great just knowing there are options instead of feeling things are out of our control (even if the option is to change our thinking about the situation). Your last night makes me realize I should change my thinking about Robert visiting. He’s not visiting on the weekends, he’s living here! Thank you. You’re brilliant!
Denise
Robert does live with you.
You use New Home for respite so you can work.
Trish
I meant to say “your last line” not “last night” — hmm, someone didn’t have her coffee yet when I posted that this morning!
G-J
Hi, Trish! I like your post and all the thoughts and comments it has generated. I loved Denise pointing out to all of us that Robert DOES live with you, just not in your converted garage as you had anticipated. It will be interesting to watch how this changes things. For example, will Robert now have more responsibilities at your house? I think it’s awesome that Robert took care of letting Oz in the house, even though it meant putting on his helmet and getting his walker.
Trish
Yes, Robert likes having jobs and responsibilities. Richard already told Robert his job is to notify us when the animals want out (Robert spends time in the family room which is where our sliding glass door is to the backyard). He also keeps his bathroom clean (wipes out the sink after brushing his teeth) but I’ll have to think of more things for him to do. He’s pretty resourceful — he can place dishes on his walker seat and then push them into the kitchen after dinner. I usually tell him he doesn’t need to do that because it’s such a tight squeeze but I’ll think of something!
I am happy this post has generated a lot of discussion and thought. I love how we all learn from each other, not just in the posts, but comments as well!
Meryl
Trish, thank you for your post! I also didn’t realize about “other options” until I spoke to Denise. I was going to visit my mom all the time instead of taking some time for me and regrouping. I am glad you and Robert had a great time and you were able to have other options as well!
tammy
hmmmm…rocky road ice cream…..sounds good to me.