Saturday, August 5, 2017

Advocacy for the Win!

Whoever says the government doesn’t act quickly has never met the Licensing & Certification Program (L & C) within the California Department of Public Health. 

On July 12 I filed several complaints with the L&C regarding Robert’s respite stay and by July 31 they validated my complaints!  (At least a few of them.)

Advocacy for the win!  (At least a partial win.)

The investigation involved reviewing my claims, the photos of Robert’s injuries and documentation of the incidents, interviewing me, visiting Gramercy Court (the Skilled Nursing Facility involved), reviewing their files and conducting interviews at the facility.

When I first talked to the investigator, I was not sure how the investigation would go.  She started with my first complaint of Robert being injured due to two falls in four days and not being properly watched.  Her first comment was that Skilled Nursing Facilities are understaffed and it is unrealistic to expect someone to be watched 24/7. 

Are you kidding me?  The licensing agency is excusing a SNF because they are understaffed? Isn’t that a problem to be fixed?
Rach, Robert and Trish (l-r)
at the State Fair for some fun

Of course, I took a breath before saying anything to her.  (I am only a hot-head in my own head.)

Yes, I understood how understaffed SNFs are; however, I think it is reasonable to expect some sort of plan to minimize falls for a person that is a fall risk.  I explained Robert is in a wheelchair and needs assistance in transferring and in the restroom.  I told the investigator that this was made clear when I admitted Robert to the facility. 

She then explained how the investigation works and acknowledged getting my photos and follow-up documentation.  She said they will investigate the falls and the procedures the SNF has for preventing them and handling of them if they do happen.  She said she will look into why my request for the fall reports was delayed and will investigate the medications issues.

She explained they have no jurisdiction over my getting a refund.  I knew that but thought I’d throw it in to my complaint.   (Oh, by the way, after promising me a refund, Gramercy has not sent me one.)

The investigator explained that I would be told the outcome of the investigation once it has concluded. 

While she went to work on the case, I kept an eye on Robert’s bruise.  It had developed a hard lump under the skin which the doctor was slightly concerned about.  The doctor ordered an ultrasound so I kept Robert home from his Day Program and we went to the ultrasound.   Robert was having a terrible cluster of seizures that day on top of his ultrasound appointment so that was a not-so-excellent day (contrary to Robert saying it was). 

Robert is feeling excellent
and loving the State Fair!
Thankfully, Robert’s seizures eventually stopped and the ultrasound did not show any internal damage, bleeding or clots.  One less thing to worry about. 

I tried once again to ask for my money back.  My email was left unreturned and no one was “in the building” to accept my call. 

I knew filing a complaint would most likely result in me not getting my money back but I did not want that to stop me from trying to get changes made at the facility.   Robert was only at Gramercy for a short stay so the point of my complaint was to force them to make changes so this does not happen to another resident, whether they are short- or long-term. 

When the investigator called on July 31, she explained they found two deficiencies from their investigation.

1.   A fall risk assessment was not done upon admission nor was a fall risk plan instituted upon admission even though they had notice that he was a fall risk;

2.   A care plan was not developed after the first fall;

A few days after talking to the investigator, I received their formal letter with their findings.  The letter states they completed the investigation and “substantiated your complaint.” Further, “L&C validated the complaint allegation during the onsite visit” and the provider will need to document “their plan/s of correction.”

Yes!  I knew they could have done better!  Changes will have to be made!

I will make changes, too, when taking Robert for a future respite (although I have soured on that facility so he will not be returning there).   I knew admissions seemed disorganized but now I know a few more things to look for when taking Robert in for a respite stay. 

As far as the complaint about the medication schedule, the investigator could not find that the medication schedule was attached to the doctor’s orders originally faxed to the facility.  My schedule was in Robert’s chart but the medications were only sent in a list from the doctor without specific times to be given.  I did not see a copy of the doctor’s orders but know they had the schedule.  I think they only attached his medication list and not the schedule the medications should be given. 

This whole thing was a learning experience for me.

I know better than to think the nurses will follow the schedule I have worked so hard to develop with his doctors unless it is included in the doctor’s orders.   Robert’s doctor was very upset the nurses didn’t follow my schedule or even question it when it didn’t correspond to her orders. 

But I know this! I know this is how they work! I have gone through this before and absolutely should have double-checked that the orders included the medication schedule. 

Definitely a learning experience for me. 

At the next appointment, I will talk to Robert’s doctor so she knows the nurses will not deviate from doctor’s orders – regardless of information they have from the caregiver.  She is a terrific doctor and does so much for her patients and their caregivers and I am sure she will appreciate knowing this and change the way respite orders are written for her patients. 

Now that my complaints have been validated, I will try again to get my refund.  Not only was the care given not what I had paid for but I picked Robert up early so he wouldn’t continue to be injured! I paid for more nights than he was actually there. 

(Update: The refund came in for the full amount of the stay and I didn't even have to ask again.  Not surprisingly, the check was dated the same day as the conclusion of the investigation.)

Refund or not, this was a win.  A WIN!  Changes at Gramercy have to be made because problems were brought to their attention and care for other residents will be improved because of these changes. 

Advocacy for the win!


Sunday, July 16, 2017

The Perfect Day; the Not So Perfect Respite

My daughter’s wedding was the perfect day. Absolutely perfect.

Rachel and her fiancĂ© (ack! Husband!) planned every last detail to perfection. Matt (her husband – see? I’m starting to get the hang of that), even called it a “Pinterest Perfect” wedding. And it was!

Rachel and Matt
First Dance
Every mom wants her daughter to have the best day on her wedding day and I am very confident Rachel did. Everyone felt the love and joy and had a wonderful, lovely, fun, laughter-filled  – yes, even excellent – time.

A week after the wedding they still have that after-wedding glow. (Pretty good since they’ve been together for eleven years – high school sweethearts!)  Sigh.

I just love love!

I have to add I was quite proud when I realized Rach was using spreadsheets to plan her special day. Yep, that’s my girl!

I did my share of planning for the care of Robert and our pets since we would be out of town for a few days for the wedding.

We used pet sitters referred by a friend and introduced all the animals to them several times before we left. I labeled all the cupboards with post-it notes, labeled the medications and supplements and also created an “About” document for each dog (and even the turtle!). The staff at Peaceful Pets was amazing! The two sitters who visited and stayed with our babies sent photos and an update every day and I was so thrilled (and a little amazed) there were no issues – just lots of loving care.

Planning for Robert’s respite care started last fall. Since Robert is a client of the local Regional Center, we get 14 days of respite care per year.  

In theory.

In reality, we haven’t had a respite day in two years. Robert’s case worker tells me that finding a care home to temporarily take a male, mostly non-mobile client (Robert needs assistance if walking with a walker and when transferring from his wheelchair) is pretty much impossible.

I accepted that and realize I am luckier than many since Robert has a terrific day program to go to during the day while I am at work. However, I really wanted to spend a few days (and a few overnights) of non-caregiving time to help Rach with the last minute details of her wedding and to fully enjoy and experience this important life event.

I felt a little guilty not including Robert but I knew he would be just as happy hearing about the wedding and seeing the pictures. Those who know Robert know this to be true.

So last fall, I asked Robert’s case worker to please find a place for him for five nights.

I knew this was not a sure thing so I simultaneously worked on Plan B: finding a Skilled Nursing Facility to take Robert and paying for it out of pocket. I hoped I could talk Other Brother into this private pay option. (Thankfully, Other Brother is very generous and readily agreed to pay for it.)

I chose the facility that Robert is familiar with and where he stayed after his hospital stay three years ago. He received good care then and I thought the familiarity of the facility would result in a successful respite stay. I wanted Robert to be happy and well-cared for and ready for some wedding stories when he came home.  

In preparation for Robert’s stay, one of his neurologists wrote an order for a respite stay. I sent her Robert’s medication list and schedule which she included with her order.  I called to confirm the orders had been received and confirmed the dates of respite.

The admissions director was pleasant and assured me everything was ready for Robert. We discussed the time of day to drop him off since I didn’t want to bring him during a busy time, such as a shift change.

I updated my “About Robert” document which explains how he needs help dressing and bathing, what his seizures look like, his incontinence as well as his little quirks and his love for Rocky Road ice cream (I always like to throw that in since it is so important to Robert).

I now wonder if I stressed enough how much assistance he needs when transferring from his wheelchair. I thought I was clear but doubt is creeping in.

When it came time for respite, I loaded the car with incontinent supplies, Robert’s suitcase, walker, razor and toothpaste and, of course, his word search book (and an extra one, just in case). I took Robert in and met the nurse and the CNA. They asked me if I had the admissions packet.

Um, no. I don’t even know what that is.

What hospital did he come from?

Hmm. They sounded confused at first then assured me they knew Robert was coming but explained there was usually an admission packet. I told them I didn’t have that but I gave them a copy of the medication chart/schedule as well as his “About Robert” document.

Before I could bring in the rest of his supplies, Robert needed to use the restroom. I took this opportunity to show the CNA just how much assistance Robert needs to transfer to the toilet. She was grateful I was showing her what we did at home. She also said she would read the “About Robert” document and would be with Robert during the morning shift the next few days.

Awesome – consistency.  

After getting Robert settled and making sure the nurse had the medication schedule, I left while Robert ate lunch. Robert was happy and enjoyed meeting the nurse and CNA.

Later that afternoon, I received three calls from the facility about various admission questions and paperwork. They wanted me to return to sign some documents. (You know, I was just there!) I explained I was getting ready to go out of town and could not come back to sign any paperwork. The rep seemed satisfied with that and said we could handle everything when I picked Robert up on Monday.

I received another call the next day with the same questions. Different rep, same questions. Goodness, people! Get it together! I gave her the same explanation and she said that was fine. I asked how Robert was doing and she checked on him for me. She called me back to say he was doing great.

At noon on Friday, I received a voicemail to call the facility.  I called back and was told Robert was “found on the floor” of his bathroom with all of his clothes off.

Photo taken Sunday, July 9
What do you mean “found on the floor?” Wasn’t someone with him?

Apparently not. The nurse explained that Robert wheeled himself to his room and then went to the bathroom by himself.

My first question was if he was wearing his helmet (phew - he was) and if he was hurt (they said he wasn’t). The nurse said they would check vitals every 15 minutes to be sure he was okay. I stressed (and I mean stressed) that he cannot go to the bathroom by himself. HE NEEDS ASSISTANCE!

I was pretty clear.

The nurse said he completely understood and was very apologetic.

I tried calling the facility seven times on Saturday (wedding day!!) but we were in the mountains and service was sketchy. (I found myself doing what a friend who lives in a rural area of Arkansas does – holding my arms out above my head in search of service.) No luck.

The wedding day activities picked up and I stopped trying to call. (I was pretty busy making sure my recurring tears weren’t ruining my make-up!)

Just before 10:00 p.m. (and during the wedding reception!) I glanced at my phone and saw a missed call from the facility from a couple of hours earlier.

Well, crap. This can’t be good.

I was able to use a land line and got through to the facility.

Photo taken Sunday, July 9
Robert had fallen. Again. This time, the nurse tried to blame Robert “he was eating dinner in the dining room then just wheeled himself into his room and tried to use the bathroom.”

Oh. I see.

The person who you were told needs assistance was left to his own devices and fell.

Twice in four days.

I can understand an accident (heck, Robert has fallen in our care before. Accidents do happen.) To me, this wasn’t an accident – this was from people not paying attention. I left these people in charge of Robert’s care and expected him to be returned in the same shape as I left him.

Certainly not worse!

I had planned to pick Robert up on Monday but we got back into town mid-afternoon on Sunday so I decided to pick him up early. I really couldn’t risk Robert falling a third day in a row.

I called the facility to inform them I would pick Robert up in about an hour. The nurse was resistant to me doing so and told me she had to call the on-call doctor or would have to mark Robert as leaving “against medical advice.” She then told me if that happened she couldn’t release his medications to me. What the heck?

I told her I would be there to pick him up and to do what she could to get Robert released. This was the same nurse who called me the night before about the fall and I reminded her why I was picking him up early.

By the time I got to the facility, everything was set for his release. The CNA had packed up his belongings and the nurse gave me his medications. I asked for their medication schedule so I knew what he had taken so far that day. There was a great deal of consternation about providing that to me since there were nurses’ names on the schedule. They finally were able to print out a list of the medications and when they were supposed to have been administered.

I reviewed the list before I left the facility and realized they completely changed the medication schedule that I (and the doctor) had given them! The two medications that have to be taken with meals were not given with meals at all. The bedtime dose of Zonegran had been switched to the morning which made no sense! If I hadn’t asked what he had been given that day, I would have doubled his dose of Zonegran for the day!

Of course, the switch in the medication schedule very well could have contributed to his falls – who knows if a seizure made him fall or if the change in medication made his balance even worse than it already is!

Photo taken Thursday, July 13
On top of the revised schedule, they ordered extra medication for two of his prescriptions. I gave them enough medication for the respite stay plus an extra day as a back-up. They didn’t need to order more meds! I asked if this was going to cause an issue with his regular prescription schedule and the nurse said she didn’t know. The CNA chimed in that I should take the medications just in case it does. I took it but don’t know why it was ordered in the first place. It was completely unnecessary.

As I was checking the medications to be sure they returned all of them to me, the nurse told me that Robert had a small bruise on his right hip.

We finally left and it was time to get Robert into bed by the time we got home. I changed him and that is when I saw his bruise.

Oh. My. God.

It was larger than the size of a softball and very dark and green. I then noticed a scrape on the back of his leg and another bruise under his right arm.

A small bruise?! Not even close. Thankfully, Robert didn’t remember falling and has a very high pain tolerance. Nothing hurt him at all. Robert did not remember anything about the facility except they had great food. I am so very grateful for this small miracle.

I worried about the bruise, though, since it looked so terrible and I made an appointment with his primary doctor the next day. She was kind enough to get us in even though it meant double-booking an appointment. She examined all of his bruises and the scrape and told us to ice the hip bruise. She said it was in the general area of the liver and gave me signs to watch for that would indicate a liver problem.

I couldn’t believe how serious this could be! After the appointment, I called the admissions director and told him I had just come from the doctor with Robert. He knew nothing about any of the falls but was very apologetic. I asked for the fall reports and a refund. He said he would definitely bump my concerns up to his “team” and would call me back.

When he hadn’t yet called me by mid-day on Tuesday, I called him. He promised the fall reports but said they needed to be retrieved from the medical records department. He also said he couldn’t give me a refund. I reminded him that Robert came home in worse shape than he went in and he apologized but he couldn’t get the refund approved.

I next left a message for the facility director who never called me back.

Late that afternoon, the admissions director called me back to say the reports were coming “soon” and that I would get a refund after all.

Hmm. I’ll believe it when I see it (which I haven’t at this writing).

It took two more days to get the fall reports (which indicated “no injury” with regards to both falls!).  I understand that bruising can show up after a day or two but the nurse TOLD me about the bruise. She had to have seen how big it was and yet there was no mention of it in the reports.

I was absolutely livid. How could the care be so bad in such a short period of time? Of course, I did what I usually do (and what many caregivers do): wonder how I could have done things differently in order to get a better result. Better instructions? More phone calls? Maybe with Robert’s cognitive issues he shouldn’t be in a skilled facility?

Ugh. No. I had to stop. I prepared for this. I told them Robert needed assistance (and certainly stressed it after the first fall). This was not my fault.

This was on them.  

I filed a report with the licensing agency for this facility and notified them about the falls and medication issues. My hope is that the investigation results in better care for others in the facility.

Thankfully, Robert’s bruises and scrape are healing and there does not appear to be any liver damage. His seizures haven’t increased due to the medication incompetence (and, thankfully, I didn’t overdose him when I brought him home).

Things could have been much, much worse and since sharing this experience I have heard from several people who did have much worse experiences when leaving their relatives in the care of a skilled facility. A few had horrific experiences.

I understand many of these facilities are understaffed so I actually do not blame the nurses or the CNAs. I really think they try to do their best (except the nurses who change medication schedules. Those nurses I do blame!!).  The reason I filed a complaint is not to get the staff in trouble but in order to make sure the administration sees there are problems and, hopefully, decide to increase staffing ratios or make other changes so no one else suffers because of neglect or lack of resources.

Those of us who can advocate for better care must do so not only for our own loved ones but for those who cannot speak for themselves. Most of the residents of a skilled facility are in no position to advocate for themselves and many of them do not have someone who can advocate for them.

Rachel and Matt
After the "I Dos"
The softy in me loves love and I am so grateful to have been part of Rachel and Matt’s perfect day. (I still get teary when thinking about their wedding!)

The fighter in me also believes in advocacy and tenacity and I promise I will not stop insisting on quality care for not only Robert but others like him.

We all deserve love and we all deserve the best possible care when we cannot provide it for ourselves.

I will keep you posted on the investigation but, in the meantime, please share your own Skilled Nursing Facility experiences (good or bad). 

Sunday, June 18, 2017

It's the Moments that Connect Us

Moments are what make caregiving special. The endless days of routine mixed with crisis can be exhausting and frustrating and overwhelming but when we can hang on to the moments - that is what can turn exasperation into delight.

I can’t really consider myself my dad’s caregiver because before he died he didn’t want me going to doctor appointments with him or telling him what he should be doing to manage his end stage renal failure.

Dad was given six months once the renal failure was diagnosed and it was six months later that he died. His cancer most likely had returned, causing the renal failure, but we cannot know that since he wouldn’t let the doctors do any testing.

Dad hated doctors and was positive they were trying to kill him so he avoided them and didn’t believe them when he had no choice but to see them. Refills of pain medications and Viagra are the only reasons Dad would see a doctor.

I insisted on seeing his doctor with him in order to fully understand what was going on. Dad was only 67 years old – surely there could be treatment for him. Dad was more stubborn than me, though, (I know – hard to believe!) and refused to let me see his doctor.

“I don’t want to be mad at you for making me go on dialysis.”

It is really hard to argue with that plea so I backed off.

Dad had always done things his own way so why would the end of his life be any different?

Dad was a character who tried my patience but who also made me laugh and gave me so many moments to remember him by. Having a close relationship with his siblings has given me a peak into who he was as a son and brother, too. At his funeral, one of his many brothers said Dad was always the “ray of light” in the family.

Dad did have a way of making us laugh! I probably laughed the most when Dad was driving one of his many convertibles and his toupee flew off his head! He literally pulled over on the side of the freeway, backed up and got out to retrieve it. I don’t know how he wasn’t killed but that moment still makes me laugh!

He has been gone for seven years but I keep learning new things about him.

My cousin, Steve, shared a wonderful memory of Dad. “When I first started working at a "serious" job, he spent time with me to discuss sales, confidence, and how to talk to people of all types...and, while it may sound surprising, how to not take $#!+ from people in a diplomatic way. The fact that he took that time with me is something I still hold onto. Love you, Uncle Al.”

Actually, that isn’t surprising at all! Dad would never take crap from anyone. One moment I shared with him is when he was buying a new car. Dad loved to drive a new Cadillac (although he went through a Lincoln and then a Jaguar phase too). I was with him at the car dealer and Dad was always either “rolling in dough” or asking me to borrow $20 for cigarettes and Diet Pepsi. Dad was more on the side of needing to borrow money when he decided he needed a new Cadillac.

I met him at the car dealer and while he paced through the showroom, several sales people were pouring over his application. They asked him about a mark on his credit and he went off on a rant about how that was a bunch of “bullshit” and he didn’t owe that person anything. I couldn’t believe he was bulldozing the sales people and just watched them look at him, almost entranced.

He drove out of there with a brand new Cadillac.

No one out-sells my dad.

That self-assurance translated to his family relationships too. My Aunt Judy recently told me that “your dad would always take the baked beans at a picnic and hide under a tree and eat them.” Of course he did! He was not concerned about social graces or that others might want the baked beans! Many years later, Dad would always bring the baked beans to our Thanksgiving dinners and after hearing this story, I suspect he stole Aunt Judy’s recipe. Oh dad!

Once Dad became a grandpa there was no end of crazy antics! He was not one to ooh and aah while I was pregnant but once Rachel popped out he went bananas. He loved being around her and my brother’s kids who came later. All three of them have moments to remember of their “crazy grandpa.”

For as seemingly self-centered he was, he was almost magical in his ability to mail out birthday and holiday cards so they arrived on the exact day we were celebrating.

Rachel said, “He would call me every Halloween and pretend to be Frankenstein, no matter how old I was!” And he did! Rachel was in college and still getting those calls from Frankenstein. We joke now how much he would love seeing Rachel get married but would be flirting mercilessly with all of her bridesmaids. 

Dad’s oldest brother took Dad’s death very hard. Uncle Ernie is the patriarch of the family and takes his role very seriously. He is kind and family-oriented and beloved. His memory of Dad especially touched my heart. “Being silly kind of runs in the family. Al had a great sense of humor and he could make you laugh. He really was Dad's favorite son. He was so proud of Al's ability. I miss him a lot. I do wish I could have seen him more often.”

As he lay dying in the hospital, Dad would pop up off the pillow, out of his confused state and ask, “Am I dying? Am I dying?’ I reassured him he would be fine and he would turn his head to Rachel, giving her a shrug and flashing a grin that told us he was accepting this experience just like every other unexpected and crazy experience in his life.  

The night before his funeral I had a dream of him flying through the sky in his red convertible and giving me a wave with that same grin on his face.

Each of us has these moments that stay with us and sharing them with one another is what connects our family.

That and love. Love, no matter how crazy the antics or frustrating the behavior, will always connect us.

Wishing you many moments to remember and love.

Happy Father’s Day!

Saturday, May 6, 2017

Always One More Thing

For caregivers, there is always one more thing.

Add another specialist? Sure, no problem.

Always excellent.
Increase the number of appointments per year with a doctor (or multiple doctors)? Of course; it’s needed.

Increase blood tests/CT scans/MRIs/x-rays? Okay. We will fit those in.

Can you add brushing his teeth to the daily routine? And bring him in more frequently for cleanings? Okay.

Don’t forget to floss his teeth, too. Sigh.

Then, there is the “caregiver creep.” You know how it is. You start out with a walker and end up with a regular walker, a 4-wheel walker, a wheelchair, a transport chair, a shower chair, an acapella device, an inhaler, a nebulizer, an oxygen machine and hospital bed.

And that’s just off the top of my head.

We always get used to whatever changes or additions are made to our routine. We have to – it’s what we do!

It is what caregivers do!

It helps that the loved one I care for has an unbeatable, excellent attitude. He is a good sport about everything and only occasionally gets cranky (usually when he’s tired or recovering from a lot of seizures).

There are times, though, when the one more thing just is too much. It is the last straw, which, for caregivers, means we just need a minute to regroup and then we will get back to managing and coping and accepting again.
Robert can even fall asleep with this on!

For me, it was the flossing. Really? It isn’t that I can’t do it or do not see the importance of keeping his teeth and gums healthy in case he aspirates during a seizure but it is another task added to an already lengthy and time-consuming list. It is the time-consuming part that is so maddening. Those five and ten minute tasks add up!

I could see the benefit since his bouts of pneumonia and the severity of them diminished (at least they had before this year). The extra dentist visits and increased oral hygiene really was helping! (I have to admit, however, there is no way I can floss Robert’s teeth twice a day. I’m lucky if I can do it on the weekends but I do it when I can.)

This year, though, he has had pneumonia twice! It didn’t land him in the hospital but he was pretty sick. Richard and I were able to take care of him at home while monitoring his vitals, using the nebulizer and keeping in close touch with his pulmonary team.

Robert not only has Restrictive Lung Disease and recurring pneumonia (well, along with his epilepsy and other issues), he has the darndest time coughing! It is difficult for him to purposefully make himself cough to get the gunk in his lungs out. This means it sits there and germinates, creating a little bacteria paradise (for the germs, not Robert).

We use the nebulizer with Albuterol followed by a saline solution which occasionally makes him cough. He also uses an Acapella which is a device he blows into to help exercise the lungs.

Nothing produces a really great cough, though.

The solution? More equipment!

During one of Robert’s hospitalizations he used a TheraVest which is kind of like a life jacket on steroids. It fits snugly on Robert and hooks up to a machine which blows up the vest and makes it shake. It also pushes up a bit so Robert almost has to cough! It is a pretty cool device.

Robert’s pulmonary team decided after his pneumonia in March that he should have one of these vests at home. Genius! When he has pneumonia we will put that on him and get the gunk (yes, that’s a technical term J ) out and he will have a quicker recovery period.

Or so I thought.

The approvals finally came in and a nurse delivered the vest. The set up and training took much longer than expected but that was fine, the nurse was nice and knew what she was doing. Robert was a good sport trying it on and going through a session. The nurse explained the machine was pre-set to take Robert through a 30 minute session.

Okay, no problem. Thirty minutes when he is sick in bed is not an issue. He will be able to do it and it will help him cough and then breathe better. Awesome!

The nurse continued with the instructions, glanced at her notes and said the doctor ordered the treatment twice a day for 30 minutes each time.

Wait. What? Twice a day? Thirty minutes? Really? It takes two hours for Robert to get ready in the morning, two hours to eat dinner and he has to be in bed by 8:00 in order to get enough sleep to stave off seizures. (Not to mention the time in the bathroom for changes and grooming!)

Well, crap. When are we supposed to fit this in? How am I supposed to work full-time, get Robert enough sleep, take care of all of his other personal care tasks and maintain my sanity?

Yeah, I let myself take a minute to have a little mini-meltdown. (In my head, of course – the nurse was still here after all.)

It took all of a day to figure out how to add this into the routine. We definitely cannot get Robert up any earlier in the morning but Richard suggested Robert use the vest when he gets home from Day Program. Then I set him up with it after he has eaten dinner and we have finished the post-dinner routine. He gets to watch television with it on (although the machine is very loud so going deaf will just have to be something we deal with in the future).

So, yes, I allowed myself a meltdown but then pulled it together and Richard and I figured out how to manage this one more thing. That’s what we do.

That’s what caregivers do.

Let yourself have that meltdown but then suck it up and get to work. That’s what we do.

That’s what caregivers do.

It has been less than a week of our new routine but it is working out and Robert has had some productive coughs. We might have days when the routine is not going to work and we can’t fit everything in a day but we are going to do the best we can. That’s what we do.

That’s what caregivers do.

(For a slightly different, less angst-filled perspective, please read Richard’s post about this same topic. Richard is definitely more of a “let’s do this” kind of guy.)

Thanks for reading, everyone. I don’t say that often enough!

Love,

Trish