Piecing Together Respite

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.

Dinner Date! 

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
with Rachel

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.

Yum!! 

Create! In Spite of the Doubt

One thing I remember about my mom is how she loved to write poetry. She would write poems or lengthy thoughts from her heart in birthday cards, in her journal, and I suspect in her anniversary cards to her husband(s).

Two of Mom's photography pieces

We would joke about the “book” mom would give us on each occasion. 

I would tell her how good her poetry was; how raw and open and soul-baring yet she never believed it. She didn't think she was good. She didn't try to get published because she didn't believe in herself. Publishing isn't the absolute goal for artists but she didn't even write as much for herself because she didn't believe in herself.

She lived with doubt enveloping the creativity within her.

Yet she continued to create. 

Photography was Mom’s passion. She didn't think she was good at that either but her love for it seemed to be greater than her insecurity. Other Brother and I are fortunate to still have her some of her photographs and I think he even has some of the original negatives (this was a pre-digital age!).

Mom was not content to just take pictures – she wanted to have a hand in developing them too.  She turned a built-in room that was intended to be used as a bar (hey, it was the 70s) into a dark room and loved to spend time processing her photographs.  (Now that I think about it, it was most likely a “dual purpose” room.)

The door would be closed and we had strict instructions to stay out until the developing process was complete.  Sometimes Mom would allow us a peek and I remember seeing the photos soaking in bins of solution and then hanging like laundry across the room.

Mom would haul us to parks and lakes and goodness knows where else in order to get the perfect shot. I don’t recall a lot of candid shots but know there were plenty of staged shots and several “takes” until Mom was satisfied with the moment she was trying to capture.

If the photography thing didn’t work out, she certainly could have been a director. 

Mom chased storms before storm-chasing became a thing and loved to find a bigger and better camera lens, various filters and other equipment.  She was easy to buy presents for at Christmas – anything photography related made her happy.

It's ironic that the people who are born to create are often times also riddled with insecurity.

Mom continued to indulge her artistic passion but always with the nagging belief that she was not good enough to show her writings or her photos to anyone other than family and friends.

Even opening up that little bit took guts.  Mom did not completely let her doubts and fears keep that talent inside of her. She was able to create, keeping her doubts beside her, and allowing herself to be vulnerable anyway.

Her photographs are special to me so I am very grateful she did not let her fear stop her from creating.

I must be thinking about this because, today, the Oscars will be broadcast. I love the movies but since caregiving duties have increased, I haven't been able to see as many as I would like. I do love to watch the awards, not for the celebrity aspect, but because I love seeing the snippets of the work and hearing the speeches from people who are passionate about creating.

I love the creative process of it all – not just acting but the behind the scenes work: the directing, the writing, the photography and the collaboration.

Whether it is a movie, a painting, an illustration, a dance, book, screenplay, poem, song or photography, it's all about creating in spite of the doubt.  It is about the making of something that shoots out of your soul and sharing that with the world, even if that world is just your family and friends.

Sorry, Not Sorry

I have a friend who is a caregiver to her husband who has Early Onset Mild Cognitive Impairment. G-J is a dynamo! She cares for her husband which involves numerous doctor’s appointments, medications, classes to help brain function as well as many, many other tasks. She teaches at a local senior care home, is a freelance writer, manages to spend time with her college-age son and is a busy volunteer with the Alzheimer’s Association. 

Other Brother and I after a wild ride on a roller coaster

in Santa Cruz (2007)

Like I said, she is a dynamo.

She is also one of the authors (with me and three others) of the book 365 Caregiving Tips: Practical Tips from Everyday Caregivers (which is on sale now!!).  Our emails to each other regarding this book and our next book project (regarding travel tips for caregivers) or just to say hi sometime start with “I’m sorry I haven’t responded sooner.”

She is busy; I am busy; caregivers are just really busy. 

We are busy caregiving, advocating, planning, chauffeuring, managing a crisis or three and trying to maintain friendships, relationships and balance.

We end up saying sorry – a lot.

G-J and I finally decided we did not need to apologize to each other any longer.  I have this agreement with all of my other friends who are caregivers as well.  We might be late in responding to emails, phone messages, self-imposed deadlines or a check-in text.  Now, we may be late in responding but apologizing is no longer a part of the conversation (or at least we are trying to eliminate it from the conversation).

Sorry, but not sorry.

I tend to feel responsible for anything and everything which leads to a great deal of apologizing. No more.

Sorry, not sorry.

(This is hard for me, actually. I want to apologize, I feel the need to apologize but I can’t continue to apologize for things that are many times out of my hands.)

Caregivers are busy but we do not intend to be late in responding. We do not mean to slide in at the last possible moment to a doctor’s waiting room (yes, I had Robert use the bathroom before we left the house but he either needed to use it again once we arrived or had an accident on the way and needs to be changed). I am not intentionally late nor am I so disorganized that I arrive late. I plan ahead and give us plenty of time to get to appointments but there are times when we will be late.

Sorry, not sorry.

(I think maybe this will be easier to say the more I say it.)

Of course that pang of guilt hits me in my gut when I realize I haven’t talked to Other Brother in six weeks or when I am late for a hair appointment because Robert was in the ER all day (and there was no way in hell I was going to miss that hair appointment after that stressful day!). Or when I realize I only wrote one blog post in a month. Ugh!  I do wish I could do everything I intend to at the time I want to but sometimes that just isn’t possible.  

Sorry, not sorry. 

(Oh! But I am sorry but I just can’t continue to feel guilty about the things I am not accomplishing right now.)

Caregiving is certainly not an 8 to 5 job.  It is unpredictable, stressful, relentless and exhausting. Add to that a passion for advocacy to help other caregivers, a passion (and need) to write and then squeeze those in between caregiving tasks and working full-time.  Other caregivers understand this so know that no apology is needed when an email sits unanswered or a project deadline passes or our tone gets a little terse.

“Sorry” is not needed. 

I will certainly do my darndest to make it appointments on time, answer emails and keep my projects on track. I will do my best to be sure my frustrations don’t leak out in the form of snippy comments. I will even be mindful of the promises I make to myself whether it is regarding writing or self-care. 

If I slip, know that it is not intentional. Know that my “Sorry, not sorry” is about me giving myself the grace to slip.  Know that I might be saying I am not sorry but we both know I am. 

At the risk of making more promises I can’t keep, I think I will at least promise Other Brother a phone call.  Well, at least a text.  A text I can do.  Just in case that doesn’t happen, let me just take care of that now:

“Hey, bro! How are you? I miss you!”

See?  No sorry needed. 

Love Is All Around Us

It is Valentine’s Day so why not talk about love? There are many examples of love that I have been privileged to witness and not just the lovey-dovey kind found in commercials for Valentine’s Day chocolates or Viagra.

Love is going through life knowing you have someone on your side. Even when they drive you crazy sometimes.

Love is sitting by a friend’s side in spirit, through text, phone and email while her husband dies after putting up a valiant fight to live.

Love is another friend (GJ) finding creative ways to boost the spirit of our friend, Kathy, as she maintained a vigil as her husband passed after a brutal fight against Lewy Body Dementia. Then seeing that creativity take off in social media with a ritual of #coffeewithacaregiver.

Love is the persistent cat who thinks you should be petting him instead of pounding on the keyboard. And will lie down on the keyboard to prove his point.

Love is the outpouring of concern and worry over a social media friend who was in a very bad space. His friends and family were alerted and he was able to get the help that he needed in time. The kindness of “strangers” was such an example of pure love that it sticks with me to this day, several years after this happened. Those online connections cannot be dismissed.

Love is not only a gift of flowers and chocolates but the willingness to do the day to day care of a loved one.

Love is coffee dates, shopping and belly laughs with my daughter.

Love is a romantic proposal in the snow and puppy kisses to boot.

Love knows Other Brother is a phone call or text away and that he will answer every single time.

Love is a son who takes his mom to breakfast regularly and sees it as a blessing and not a chore.

Love is sisters being silly together – sometimes at a time others would consider inappropriate but we consider hilarious.


Love is seeing a son grow from a young man enjoying his party years to a young man with a passion for helping those in the military with depression.

Love is seeing Robert have a seizure and mid-seizure determinedly try to tell me he is NOT having a seizure. His speech was incoherent but his message was loud and clear in his eyes: epilepsy, this seizure, will not win!

Love is waking up to two big dogs, hogging the covers and the bed and not wanting to change a thing.

Love is being tired and exhausted but not wanting to be anywhere else. (Except the ocean; not going to lie.)

Love is sharing a closet 50/50 but letting it get to 75/25 without grumbling.

Love is sitting bedside with each parent as they pass from this life to their next. It is not easy to do but easing their transition was the most loving act I could do for them and them for me.

Love can be quiet, loud, in person, online, during happy times or difficult ones, while being silly or serious.

No question. Love is all around us.

Embrace every moment of it.

Happy Valentine’s Day!

With love,

Robert’s Sister