Wednesday, May 25, 2016

Atlas of Caregiving

Last fall, I wrote about Richard, Robert and I participating in a caregiving study about our caregiving day.

Robert's View: Part of his grooming routine
It was conducted by Rajiv Mehta, Board member of Family Caregiver Alliance and Principal Investigator for Atlas of Caregiving and Dawn Nafus, his partner for the study.

Robert has volunteered for studies his entire life – for medication, the Vagus Nerve Stimulator, the Deep Brain Stimulator – anything that might help him and others with uncontrolled epilepsy.  Robert was more than willing to participate in this study about caregivers and we were excited as well.

Rajiv and Dawn made it very easy and even though it sounds like it would be intrusive (cameras, home monitoring devices, keeping a log of activities), it really wasn’t.  We quickly forgot about the cameras and went about our caregiving day. 

Robert's View: Watching Trish organize his weekly meds
As I wrote in September, the dozens of interruptions throughout our caregiving day is mind-boggling! Caregivers know this but until I saw it on paper I did not really realize the extent of how much we juggle between (and in spite of) the interruptions. 

Fourteen families participated in this study and each one is a fascinating and eye-opening read. The results of this pilot program are out and can be read here.  (Our story is here.) 

Robert's View: Richard waiting for Robert
If you are not a caregiver, I encourage you to read each and every one of these stories to get a sense of the vast amount of caregiving being done. If you are a caregiver, you will definitely relate to these stories!

On a personal note, I would like to thank Rajiv, Dawn and Celine Takatsuno (who we have worked with throughout the publishing process).  They are doing great things for caregivers and truly care about our day and what would help make our day a little easier.

We all need that extra help and support in our busy, crazy caregiving days.

Trish's View: Helping Robert

Tuesday, April 5, 2016

The Waiting

Lily was last seen in Grass Valley, CA
The waiting is the worst.

Waiting for test results.
Waiting to see if a new medication works.
Waiting to feel better.
Waiting to find a lost dog (Lily).

The waiting is the worst.

Waiting to see if Richard's extra pain is something new.
Waiting for Robert to finish eating.
Waiting for a test to even be scheduled.
Waiting to see if the sniffles develops into pneumonia.
Waiting to see if the pneumonia develops into sepsis.

Waiting feels like it sits in the half empty part of the glass.

Waiting is the worst for a glass half full girl like me.

I'm a doer. The waiting makes me "do."

I research tests and symptoms and disorders and diseases.

I print and distribute flyers and reach out on social media.

I create lists of questions.

I take vitals and keep logs and pour over them as if I were some grad student writing a dissertation.

The doing keeps me swimming in the glass half full.

When I am not doing - rather, when there is not anything to be done - the stillness of the waiting overwhelms me.

The waiting is the worst.

Sunday, April 3, 2016

Three Years

Three years ago Robert moved in with me and Richard.  Three years!! It really doesn’t seem possible it has been that long.

I took over Robert’s care at the end of 2008. Since that time he has lived in a Skilled Nursing Facility, an Assisted Living Residential Facility and a Board and Care Home.  Before that, he lived with his companion in their own home.

There were issues and stress with each arrangement. Robert was ill during the SNF stay and we were just coming to terms with the fact he could not safely live on his own. Almost simultaneously, I found out his living at home situation was worse than I had imagined (letting a homeless woman live with them who then gave Robert a black eye, living amongst piles of clutter and being taken advantage of by unscrupulous charlatans to name a few). 

The Assisted Living Facility was fine for a while (remember all those bingo wins and the piles of Milky Way candy bars he would win?) but his mobility declined and he needed much more assistance than they were able to provide.

Then came the Board and Care home.  Hmm.  Don’t even get me started.  I wrote extensively about the issues experienced there but can sum it up like this: they were not used to family involvement and did not take it well when I would not back off.  This was a very stressful situation and time.

Bringing Robert to live with us was not an easy decision, however. With Richard’s own health issues and chronic pain we wondered if we could keep up with Robert’s needs and slow but steady decline. Would it be too much for Richard? Too much for me? How could I juggle Robert, work and helping Richard when he was in need?

To the surprise of absolutely no one, I created my “pros and cons” list. I debated the list in my head, Richard and I discussed the current situation, the options and The List and we made the decision to have Robert live with us.

Over the years, Robert‘s mobility declined, his seizures increased and his bouts with pneumonia and sepsis were a regular occurrence.  Urinary (and sometimes bowel) incontinence were a fact of life.  I knew Robert needed a lot of assistance when we moved Robert in with us.

The bottom line was that there is nothing quite like home. That and I am such a control freak I realized I would be the least stressed if Robert lived with us and I could make the decisions regarding his care without a bunch of meddling from other people.

I figured Robert would live with us for a couple of years before it got to be too much.

Two years passed and we were still caring for Robert. 

We passed the three year mark last week.

During these three years, there have been plenty of times (sometimes several times a day) where I do think it is too much. 

Most of the time, though, what I have found myself realizing is that Richard and I work well as a team and we keep coming up with better, more efficient ways to care for Robert (we have enough durable medical equipment in the house to start our own medical supply store).  We split the tasks and even moved into a one story house (which couldn’t have happened without the help of Other Brother and our daughter, Rachel, and her fiancĂ©/aka Real Estate Broker extraordinaire).

Not to mention, Puppy grew up and (kind of) learned the concept of personal space.

Pneumonia hasn’t been a two or three time per year occurrence for a couple of years (yay!). It has been almost two years since he was hospitalized (not counting those pesky ER visits for some of the worst of his worrisome seizure clusters).

Don’t get me wrong, it is certainly not all puppy dogs and unicorns and sunshine.

Robert needs a lot of help with his daily tasks: dressing, cleaning up in the restroom, bathing and brushing his teeth.  He has numerous appointments with his neurologists; swallow disorder doctors, pulmonary docs, the dentist and weekly physical therapy. There is always some paperwork to be completed or medications to be reordered or picked up. It is a family joke that CVS is my second home.

It gets to be too much sometimes and I throw myself a little pity party when I pass a camper/trailer on the road that says “fun finder” or realize there are people that can actually go to dinner with their spouse or on a weekend getaway on a whim.  

Sometimes I want a pass on the other crappy things life throws at me or my loved ones.  See this plate, right here?  Just a little full.  See those good people in my life? Universe, leave them alone!


But I can’t let my pity parties last long - no one likes a pity party.

Especially kindness.

I am reminded of and overwhelmed with the kindness of others. Rachel and Matt stayed with Robert one evening so Richard and I could go to a dinner out. A dinner with my husband! Woohoo!

Strangers have gone above and beyond helping to find Rachel’s foster dog, Lily, who was lost at her newly adopted home. They have no idea what else we are dealing with (nor do I know what is going on in their lives either) but their kindness and effort has melted my heart.

Watching Robert share a deep, spiritual connection with Richard’s mom and seeing him ease her out of her depression is inspirational to me. He doesn’t even realize he is doing it.

Three years.  Three years of care, laughter, frustration, family, joy and, yes, the unexpected crap that inevitably comes along in life.

It hasn’t been easy but I am not ready to quit. I will take care of Robert for as long as I can and then I will figure out what the next best step is for him. 

In the meantime, we are going to continue to live life, do the best we can, laugh, be kind to others and keep the pity parties as short lived as possible.

Monday, March 7, 2016

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.