I followed my own advice: be flexible with respite. I explained months ago to Robert’s case worker that we would love to take advantage of respite. Robert is a client of the local regional center and one of the benefits is 14 days per year of respite care. Richard and I don’t need 14 days – heck, I just wanted a weekend. A few years ago, we used a week when we went on a cruise with family and friends and then afterwards used that same facility for an overnight or afternoon visit on occasion. Usually, we paid for these short stays ourselves or Other Brother helped with the cost of these stays.
Eventually, the director of that facility told me that Robert’s needs were too great for his employees. Such a shame because Robert enjoyed it there (although, he did start to enjoy being spoiled rotten a bit too much) but I understood. Robert’s mobility had taken a hit and it was difficult for the sweet but slightly small-framed, slightly older, ladies to safely help maneuver Robert from a chair to his room to the restroom.
Once we lost that option, it was difficult to find another facility that had availability to keep Robert. I explained to the case worker that we were flexible. Tell me what facility has an opening and we will plan a weekend around that opening.
We found a place a mile from our house and were able to use it for a couple of nights in October. The director and employees were very kind. Robert liked it but found it a little stressful because one of the residents paced and walked and was noisy. Robert wanted him to sit still and be quiet. It didn’t seem to be too big of a deal when the director told me about this but we have not been able to return, supposedly because they now have a full house with permanent residents.
Okay. We can be flexible. Let’s find another house that has temporary availability.
It isn’t that Richard and I can’t take care of Robert full-time. I understand that we get a break because Robert goes to a Day Program during the week. He was going five days a week but we have reduced it to four since Robert seems to need more sleep. Sleeping until noon on the weekends and then getting up at 5:45 a.m. through the week is just too much for him. It seems to cause more seizures and keeps him dozing throughout the day at Day Program. So he is now also home on Thursdays and sleeps late that extra day.
Richard and I can handle that and our jobs and household chores and caring for the assortment of animals living with us.
It is our choice to do so and we can do it.
Sometimes, though, we just want a break. I want a break from the laundry and the routine and the alarms for the medications and the wet briefs and the accidents and helping him brush his teeth and did I mention the laundry? I even get tired of hearing myself say, “Hurry up, Robert, [insert reason here].” (The van is here/we have to leave for an appointment/dinner is ready.)
The caseworker finally found an available home. I talked to the director who seemed very nice. I explained everything about Robert, including what his seizures look like since people tend to freak out when they hear “seizure.” Even people who should know better.
|Ahh, a pedicure!|
All seemed okay. We just had to wait for a weekend she had open since she had promised space to a few other people seeking respite. It took a few weeks (okay, months) but we thought we had found an open weekend.
Once we had a weekend date, we made our plans! I would take Friday off from work and we would get a pedicure together. We planned to stay home on Friday night and I thought a dinner and movie would be the perfect end to that evening. Richard made reservations at a nearby casino for the next night. This gave us a little bit of a feel of a vacation while not having to drive far, which makes Richard’s back pain flare up. Rachel was ready and willing to watch the dogs. We planned to pick up Robert Sunday afternoon.
Everything was set. Down to the chocolate covered strawberries Richard ordered for the room.
Except . . . it wasn’t.
The director did not have availability for the weekend after all.
The reservation was cancelled.
My chocolate covered strawberries were only a vision in my head.
It looked like respite was not going to happen.
After five minutes of feeling sorry for myself, I thought why not? Why the heck not? I decided I was going to make respite happen anyway!
I took Friday and Monday off from work. Robert could still go to Day Program and Richard and I could spend time together while he was at program.
Yes, I was determined to piece together some respite.
Richard and I took time on Friday to get a pedicure.
We stopped on the way home to get chocolate covered strawberries.
Rachel and her fiancé, Matt, offered to watch Robert while we went to dinner on Saturday.
|At the movies!|
Part of the allure of respite is giving Robert a change of scenery too. I am sure he appreciates a break from me and Richard!
So we all saw a movie on Sunday. It was something different than we usually do. Something out of the normal routine of sleep, eat, medication, Family Feud, repeat.
It was not a typical respite but it was fantastic. Robert absolutely loved having Rachel and Matt visit to take care of him. We had already given him dinner and put him in bed so they wouldn’t have to deal with accidents or bathroom duty. They gave him his meds and corralled Taz when Robert needed some space.
They even offered to do it again.
|Robert hamming it up|
There were a few glitches throughout the weekend (Robert had two days of seizure clusters and I pulled a hip muscle which we won’t discuss since this is a family friendly blog).
The seizures and rescue meds make Robert cranky so on Saturday I asked him not to be cranky with Rachel and Matt. He told me, “I won’t be cranky. I like Rachel and Matt.”
Okaaay. Obviously, a change of scenery was needed by everyone.
While it was not a typical respite we had our moments of respite and it was enough and I am extremely grateful for the break. It actually worked out for the best because there is really no telling how a facility, unfamiliar with Robert and his seizures, would have reacted to his seizure clusters.
I am grateful Richard was flexible enough to go along with this weekend “respite” and beyond grateful to Rachel and Matt for their help so Richard and I could have a dinner date.
Plus, I got my chocolate covered strawberries!
It may not have been typical but it was definitely perfect.