Making the Most of Stay at Home Respite

We created another Stay at Home Respite this weekend like we did in March when actual respite fell through. We decided it was time to do it again.

Dinner out with my sweetie

I am not going to lie: it would be really nice to have a “real” respite.

You know, the kind where my alarm does not run my life for dispensing a total of 32 pills six times a day, beginning at 5:30 a.m.  Or the kind where I have a day or two where I don’t have to worry about the morning routine of waking Robert early enough to have time to help him bathe, brush his hair, dress, brush his hair, eat, go to the bathroom, clean him up, brush his teeth, shave, brush his hair by the time the van arrives to take him to Day Program. (But not waking him so early that the lack of sleep causes him to have seizures.)

It would be wonderful if I didn’t have to always wear a watch with a second hand available to time Robert’s seizures (which have been awful this past couple of weeks).  It would be a relief not to have to do several loads of laundry every day. It would be a nice break to have a relaxing dinner instead of prompting Robert to eat so his usual 90 minute meal doesn’t turn into a two hour event.

Oh, I sound terrible!

I have it lucky, I know. I know this!

I am lucky that Robert has a Day Program he loves and goes to four or five days a week (depending on his seizures, doctor appointments and level of tiredness). 

I am lucky that my husband helps me care for Robert and doesn’t complain about any of the tasks involved.

I am lucky that I have a job that, although stressful, provides paid vacation and a decent salary. We are by no means rich but we are comfortable enough to pay our bills on time and go out to eat. (Believe me, I have had times in my life where that just was not possible so I understand how lucky I am.)

Yes! I am incredibly lucky as a caregiver! I have a better situation than many, many caregivers. I do understand this and don’t mean to whine.

I am just tired.

Ahh! Breakfast out!

“Real” respite doesn’t happen because the options we have for care facilities are limited. Robert is serviced through the local Regional Center and as his caregivers we are allotted 14 days per year. WOW! I can’t even imagine needing 14 days every year. I would like just a couple of days every now and then. Next year, I would love to have a week when my daughter is getting married but, other than that, let’s just have a weekend!

Apparently, this benefit is one of those that are on paper only. It sounds good but making it actually happen is a whole different story. My latest attempt went like this:

Me: Hi, [Service Coordinator Name]! I would like to set up a weekend respite.

SCN: Great! I have several homes available right now. Let me know when you want to schedule.

Me: How about the weekend in three weeks? We’re flexible so let me know if another weekend works better.

Two days later:

SCN: Well, we are down to one home with availability.

Me: I’m confused. I thought you had several homes available.

SCN: Some of the homes don’t accept people in a wheelchair or only accept female clients. It doesn’t look good for this last home now either.

Oh, I see.  So I can use my 14 days when Robert becomes a woman and is no longer wobbly and a fall risk when he walks?

Is that a puppy on a unicorn in a field of sunflowers up ahead?

Forget about the 14 days. If it makes the State feel better about itself for providing this “benefit” then so be it. I will go to Plan B.

Plan B is my Stay at Home Respite.

Some caregivers may get upset about me calling this respite but it helps me. Yes, my days will involve the same amount of medication and alarms and bathroom clean up duty (and possibly seizures) but I am going to do something a little different and have a little different attitude before I lose my freaking mind! SO I WILL CALL THIS RESPITE, THANK YOU VERY MUCH!

I know I am lucky. I do!  (See my “I know I am Lucky List” above)

My Plan B Respite involves taking vacation from work so Richard and I can spend a few hours together during the day while Robert is at Day Program. Yes, I feel guilty for sending Robert to Day Program while I am on “vacation” but Robert does love his friends and the staff at program. (It kind of makes me feel less guilty to say that.)

Robert at the movies!

During my respite, I think it is important that Robert do something a little different too. He enjoys a break from routine like the rest of us!  My plan was to do something different for Robert on at least one day and to do one thing out of the ordinary every day for me and Richard.  

I was able to get a massage on Day One. Richard and I went out to breakfast a couple of the days (wow! Just the two of us!); we took Robert to see Star Trek one afternoon (he slept through some of it but declared it EXCELLENT!); I got a manicure with Rach one day and a pedicure with Richard another day. Richard made us all homemade pizza another day! (Robert, not surprisingly, declared it DELICIOUS!)

Richard and I were even fortunate enough to go out on a dinner date thanks to our daughter staying with Robert.  Rach insisted it was no big deal since Robert was already in bed but she kept an eye on him, kept him in a steady supply of Family Feud episodes and gave him his bedtime medication. She may not think she did much but she did. Allowing Richard and I to spend a few hours eating dinner out and being able to talk about things not related to caregiving (although we did some of that too) was a huge help.  Not having to worry about whether there is enough space at the table for a wheelchair or if they have a bathroom that can safely accommodate the wheelchair, Robert and one of us gave us a much needed break.

Dessert was so delicious I forgot about the "before" pic! 

This may not be considered a “real” respite but it was enough for now for us. I am still tired but I am grateful for the extra time spent with Richard. I am grateful for a fun afternoon with Richard and Robert seeing a movie. I am grateful for a job that provides paid vacation days. I am grateful for a daughter who helps without complaint (and one who loves a manicure as much as I do!).

And to the State of California: You can have your 14 days. Caregivers are creative! We can make the most of a situation with or without your help.  

I am satisfied with creating my own respite to give me a boost of energy which, hopefully, will last me another six months.  I am grateful for the help from Richard and Rachel and the positive attitude that Robert has 99% of the time.

I know I am lucky and now, after a made-up, patchwork of respite, I am just a little less tired and have a much better attitude.

Yep, I am lucky and grateful. Although I could use just a bit more of that lava cake!  

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