Catching Up

It has been quite a while since I posted in this space.

I miss it.

I miss writing. I miss sharing my caregiving journey in the hopes of helping others. I miss the connections with those who grace me with their time reading my random thoughts and I miss the comments people share.

I miss getting these random thoughts out of my head. If you have ever struggled with a decision (and, frankly, who hasn’t) you most likely know it helps to write down your thoughts and (my personal favorite) a pros & cons list.

Writing helps sort through what is swirling in our brain and usually gives me some clarity.

So here I am. I am back! My plan is to not wait another two years to write another post.

Let’s get caught up.

My last post was about our decision to place Robert in a facility. That was in May of 2022.

We searched and searched for facilities for Robert. We used his Regional Center to help us find the right facility for him. We toured several and Robert was enthusiastic about each one.

We searched for almost two years and were rejected by every facility. “He has too many seizures.” “He is big and needs a lot of physical assistance and we have small staff.” “Our hallways are too small to accommodate any more people in wheelchairs.” “He requires too much care.”

In the middle of our search, Robert was hospitalized for aspiration pneumonia. I explained our situation to the nurses and they were very sympathetic. They suggested I discuss finding a facility with the discharge planner once Robert was ready to go home.

I did as they suggested and talked to the discharge planner. She was unable to find a facility for long-term care. I asked her to find a place for short-term rehab since he would need it after being hospitalized for ten days and she pushed back and asked if I would take him home after that. I told her if I could but that I would find out from them at that time if they could take him long-term. She said that is called “dumping” if I didn’t plan to take him home and she couldn’t risk her reputation with these facilities if I did that. At that point she refused to look for short-term rehab options and only came up with a couple of very low rated long-term options for me.

I was sick to my stomach. I would never abandon Robert but I knew I could no longer care for him. I had been trying to find a facility for him for almost two years! I was so angry that I just had him released back home – without the rehab he needed – so we were in a worse position than when we started.

Robert eventually got up to baseline with the help of outside PT and Richard and I using the lift during the worst of it.

Several months later, I needed to have a few minor surgeries so I found a Skilled Nursing Facility to keep him for a month while I had the surgeries and recovered without having to do the physical care Robert needed. I ended up needing more “respite” time because of infections after my MOHS surgeries and needing cataract surgery on my other eye. Robert ended up in the hospital with Covid that he contracted in the facility and was able to return to the facility once he recovered so he could have physical therapy to get stronger.

Robert then contracted RSV and was again hospitalized, recovered and returned to the facility again for rehab.

In the meantime, we welcomed our first grandson and have since welcomed another along with our granddaughter! 

One day while cleaning out the closet at Robert’s facility, I read the care notes left for the CNAs. “Two person assist.”

Oof.

I was doing Robert’s care at home by myself (although Richard helped as much as he could) so seeing “two person assist” in writing really hit me.

I told the facility I was unable to care for Robert in our home any longer. I had the hospital discharge nurse’s words in my head: this is “dumping.”

It is pretty typical to experience guilt after placing a loved one in a facility but to think you are now doing something called “dumping” increases that guilt exponentially.

I really wasn’t dumping him. I was doing what was best for all of us and had no other option.

Robert has been in the same facility now for almost a year and a half and gets very good care. Yes, I still have to stay on them for various issues but, to be honest, he is living his best life. Everyone loves him there (residents and staff alike) and he participates in all the activities. He’s the bingo king and even has former residents sending him gifts and cards. As he likes to say, he is doing “super, amazing, excellent and great, great, great!”

For almost every day of that year and a half I wondered if I did the right thing by moving Robert to the facility. Friends and family assured me it was for the best but I still had that nagging doubt. Seeing him so happy and well cared for helped. Being able to spend time with our new grandson without worrying about Robert was amazing. Going on vacation with Richard without the worry of finding respite care was a welcome relief.

Still, my doubts always found a way to creep in.

Until Richard had his cardiac arrest.

I now really truly know in my heart Robert is in the best place for him but that it is also the best situation for us.

While I will continue to write about Robert and spread awareness about epilepsy, I will also write about the experience with Richard’s cardiac arrest and his recovery in the hopes it will help other caregivers.

Thank you again for your time and your support!

What I learned From New Home

Robert has lived with me and my husband, full-time, for two months now.  Before that, he lived with us on the weekends and lived at New Home through the week (unless he was sick or if we had to cut the weekends short because of the 73 day rule).

I made no secret about the fact I had some troubles with New Home and the facility before New Home.  I expect the best possible care for Robert whether he’s living in a facility or living with me.  Sometimes it just takes a while to get the facilities on board.

Playing cards at New Home

It’s easier to see what I’ve learned from these experiences with New Home and Old Home now that Robert is no longer living there.  (Now that I’m no longer on red-alert making sure he’s well cared for.)

I don’t think having Robert live with us is giving up on facilities because I think there are plenty of wonderful, caring facilities that Robert would be perfectly happy in and I would be happy with.  Finding those facilities will be priority number one if Robert ever gets to the point where my husband and I can’t give Robert the best possible care. 

In the meantime, I have gained some insight into these facilities and have to give credit where due.  Yes, you heard it here first - I am admitting that I learned a few things from New Home. Not that it was easy coming to this realization . . .

1.  Client care.  The people who truly care for the clients are the staff workers.  The people who work at the bottom of the pay scale but whose hearts are huge.  At Old Home, the person who cared for Robert the best was the woman who did his laundry.  She made sure his sheets were changed and cleaned daily and washed and returned his clothes to him within the same day.  She took me aside when I moved him out of Old Home and explained that he was extremely incontinent every night and the New Home should make sure he was kept clean and dry.  The real concern she showed for Robert touched my heart and made me wish she could follow him to every care facility he ever had to live in.  New Home had their own caring staff, many of whom were young adults supporting themselves through college.  They laughed at Robert’s silly jokes or took time to play a game or two of cards with him. 

When touring a facility to see if it’s the best fit, pay attention to the floor staff.  Do they engage with the residents or just do their work and watch television?  Do they seem at ease having conversations with a disabled or elderly client or are they uncomfortable?  

2.   Facilities need help being comfortable with family involvement.  Each facility is different, of course but there are varying degrees of comfort with family involvement.  Old Home was used to families visiting or taking the residents out for the day.  New Home had multi-layers of rules and regulations as far as visiting at the home or taking Robert out for the day or an overnight visit. The first time I took Robert out for the day, there was a great deal of commotion and chaos when we returned because they were not used to the clients leaving with family.  I felt like a criminal for taking Robert out to dinner.  However, I was not about to be intimidated into not visiting so learned all the rules (call House Manager and Supervisor ahead of time; sign the sign-in sheet; have an estimated time of return, etc.) and followed them.  After a while, the staff got used to me and relaxed the rules a bit.  Apparently, I wasn’t quite the scofflaw they thought I was (although, after Robert had lived there for almost two years, one new staff member asked for my identification before she’d let me into the house. That stung a little.). 

3.  Supply companies and program services.  The staff and even supervisors at both Old Home and New Home were terrific at pointing me in the right direction for services and programs for Robert.  It was at the suggestion of the Director of Old Home that I enroll Robert in the local Regional Center which opened up all kinds of services for him.  Because of this, Robert became eligible for a Day Program for other disabled adults and transportation services.  When the Regional Center suggested a few Day Programs for me to choose from, the staff at New Home provided insight into the different programs and which one would be a good fit for Robert.   Their guidance proved extremely helpful and accurate and Robert has been very happy at his Day Program for three years! 

New Home also provided me with the names of supply companies to use when I moved Robert into our home so I could continue to get his incontinent supplies.  This was extremely helpful and saved me research time as well as time spent setting up a new account. 

4.  They want to do the right thing.  Even though I had difficulty with the administrators in both facilities, I do think these people wanted to do the right thing for the clients.  In fact, I saw change in both facilities over time and, sometimes, after Robert left.  Both are corporations and must watch out for the bottom line which affects many, many decisions (staffing ratios, turnover, meal selection, to name a few).  It’s a difficult balance between solid client care and profits.  Administrators are juggling both goals and it oftentimes looks as if they lose sight of the health and well-being of the clients.  I can’t blame them their predicament.  I do blame the corporate atmosphere and, if Robert ever needs another facility, will look into privately owned homes.

5.  Communication.  I can’t stress how important communication is with these facilities.  When first placing Robert, I really underestimated how difficult it would be to communicate with Old and New Home.  Now I understand they have several residents of varying degrees of disability, health concerns and family (or not) involvement and may not be able to give Robert their full attention and me full reports on Robert.  This was something I assumed would be easy going in but soon realized there were always “behind the scenes” reasons for their behavior and lack of communication.  It was really difficult to maintain good communication because when I asked for seizure logs, for instance, I was always promised them.  And then they wouldn’t show up, even after repeatedly asking and explaining their importance.  If we ever need a facility again, I will need to come up with a much better plan to ensure great communication from the outset. 

I do appreciate both Old and New Home for taking care of Robert before we were able to do so.  I think they both provided Robert with very positive experiences (remember Robert playing Bingo every day and hoarding his Milky Way “prizes?”) 

These experiences have helped us get to where we are today – Robert living with us, trying to get used to dogs who are fascinated by him and love to invade his personal space (one of them, anyway) and all of us trying to establish new routines.

For this, I am grateful for the lessons I’ve learned from New Home (and Old Home) and for helping us get to the place where we all are today: Home.

What?! Wait! I Have to do Math!?

My biggest concern about moving Robert in with us was the responsibility of his medications.  Will I be able to keep them in stock? Will I remember to give them to him at the right time? Will I be able to organize his refills and keep the Day Program stocked with Robert’s mid-day medications as well?

Robert's Spreadsheet of medications

I worried because if Robert doesn’t get his meds on time or if he misses a dose, the consequences are extreme (increased seizures which result in increased falls which lead to injuries).    

The concern I didn’t think about: I’d have to do math!  Yikes!

Don’t get me wrong – I can do math.  I have a college degree although it is in psychology, not math.  (Other Brother, on the “other” hand, does have a degree in math from a prestigious university.) 

Other Brother is also an actuary and partner in a multi-national actuarial firm.  When we were kids, our dad would randomly give us math problems and Other Brother was always the first one with the correct answer.  (I could eventually answer the question but it took me a while; Robert was usually chasing bugs or frogs and didn’t pay attention long enough to answer).   

So I can do math, I just have to r-e-a-l-l-y think about it when I’m doing it.

I created a medication spreadsheet and was grateful to other caregivers for giving me advice on what information to include.  During move-out day, I carefully counted the medications Old New Home gave me.  Once home, I put this information on my spreadsheet. 

I counted how many days I had left with the medication they transferred to me.  I counted the number of days left until the refill date the new pharmacy had given me.  There are nine medications to keep track of, each one with a different number of pills to be given at various times of the day.  To complicate things, the pharmacy changed one medication from a 1 mg dose to a 2 mg dose (which doesn’t matter since he gets that medication in 2 mg increments but it does mean more math for me).

My plan is to fill his medication containers each Saturday with one week of pills.  The first time I did it, I needed complete silence in the house for concentration and counted, checked, re-checked and then updated my spreadsheet.  I added, subtracted, multiplied, wrote numbers on scraps of paper, consulted the spreadsheet and threw in some calculus and geometry for good measure (okay, I kid about that last part). 

I checked everything again just in case.

It took me close to an hour (in part because it’s impossible to keep this household full of dogs, cats, a husband and Robert quiet for very long). 

This past Saturday went quicker.  The math is getting easier and I’m feeling better about the medication issues (and I don’t insist on quiet).

There are still a few bugs to be worked out – one of Robert’s medications couldn’t be filled at our pharmacy because, for whatever reason, Old New Home had filled it at their pharmacy.  (Um, heads up to Old New Home: Robert doesn’t live there any longer!). 

I checked with Day Program and they have enough medication to last at least two weeks.

Robert doesn’t have his emergency medication (Ativan) because Old New Home realized it was expired so they didn’t give it to me.  Robert sees his neurologist tomorrow so I’ll get a new prescription for that.

Thankfully, my worst fears have not been realized but at least I was prepared for them.  Preparation and asking for help from others who have done this for a while were essential to being ready. 

That and having a calculator . . . 

Welcome Home, Robert

No more rationing how many nights Robert can sleep over;

No more arranging doctor appointments not only around my schedule, work and when Robert is sleeping over but New Home schedule;

 

Robert's first "official" night home -
with a bowl of Rocky Road Ice Cream

No more worry if Robert’s seizures are being logged;

No more worry if he is wearing clean pants every day (and a dry brief) or if I have to change him before bringing him home;

No more calls from Robert asking if he can come over a day early and having to explain why he can’t (a real problem when we’re hitting our limit of overnight visits);

No more communication problems with New Home (although, to be fair, this had shown improvement in recent months);  

Robert is home!

The actual move didn’t take long but the timing turned out to be perfect.  I was supposed to meet the regional director at 10:00 a.m.  I soon found out she was not meeting me but having the new house manager handle the exit.  (Wonderful New House Manager was moved to a different house and a new House Manager was hired – someone promoted from the floor staff and who is very caring of the clients so I wasn't too wary of the change).

When I arrived, Robert’s things were being logged and packed because they didn’t know when Robert was moving out (the director hadn't told them and Robert had told them it was going to be that afternoon – he’s not very reliable for that sort of information). 

Robert was waiting, as he always does, in a recliner working on his Word Search puzzle.  I asked him if he remembered he was moving in with me and Richard and all I got was a, “Yes, I remember.”

I know better than to expect fanfare and excitement with Robert.  Partly because of the medications he takes and partly due to his brain surgeries, he doesn’t get overly excited about anything (unless he happens to tell a joke he thinks is particularly funny). 

The new House Manager did say he’d noticed a little more skip in Robert’s step.

Ah, I had my suspicions Robert may be excited after all!  

Fortunately, Robert’s roommate was going home for the weekend and leaving at the time I arrived, so I was able to talk to his mom and give her my contact information so the guys can get together for lunch at some point.  Robert will definitely miss his roommate and the feeling appears to be mutual so I’d like them to maintain that friendship.

If I needed validation this was the right decision, I got it in spades.

I shouldn’t have been surprised there were communication issues about the move out time.  Not a huge deal but typical of my experience there the last two years.

Validation . . .

Robert’s roommate’s mom also told me a story about when she had moved her son in to New Home and how he had a broken foot for a week before it was noticed.  For someone who is supposed to get daily shower assistance, it really makes me wonder how this could have happened.  

Validation . . . 

Granted, they’ve had numerous staffing changes since then but have yet to stabilize their staff.  They might have wonderful people there now but they haven’t been doing the job for any length of time. I hope for the sake of the clients, the staffing will stay stable. 

What I felt most during the move was relief.  It is such a relief not to have to worry about Robert getting good care and whether any changes in his health are noticed.  I’ve cut out the middle man so it’s on me now. 

And that's okay.

I’m fortunate Robert is high-functioning and fairly healthy and can do many things on his own (although at a very, very slow speed).  I’m interested how the move to our house will affect his behavior and if he will become more independent or will stay about the same.  Since Robert was the most high-functioning at New Home, I always wondered if he deteriorated a bit because of his environment.  We’ll see and it is something I will keep in mind down the road if he ever needs placement again. 

My experience with New Home also gave me a clear idea of what I would like in a future placement, whenever that may be necessary. 

The medications were transferred seamlessly (although I did somehow end up with a couple of expired over-the-counter medications).

Yep, validation. 

The briefs and bed pads along with clothes and personal care items were loaded into our cars. Fortunately for me, Hubby knows how to pack a car to maximum capacity.  I underestimated the number of boxes of briefs coming with us but Hubby made it work and we were able to move in just one trip.

Robert said his goodbyes to everyone at New Home and shook hands with his roommate.  He didn’t jump for joy when we walked out of New Home but kept to his weekend routine and asked if he could have a chocolate shake. (There’s a lot to be said about routine). 

Once we arrived home, Robert walked over to his place on the couch, took off his jacket and settled in to watch Jeopardy and do his Word Search.  Chocolate shake by his side, Robert looked pretty content.

The best validation of all . . . 

I know we’ll have our share of problems and frustrations as well as new worries.  We might even get sick of each other. 

For now, I’ll take content.

Welcome home, Robert.

Preparing for Move-In

My checklists have checklists (and that’s on a normal day).

Preparing for Robert moving in?  Let’s just say my checklists are having a tough time keeping up.

Preparations are well under way and tasks are being crossed off the list at pretty good clip! 

I started the move prep by creating a checklist (shocker).  I quickly found that a move date of “sometime in April” was not going to work with transferring prescriptions, supplies, benefits and transportation to Day Program.

After confirming that Robert would have a supply of all medications for at least two weeks into April, I chose April 1 as the official move-in date.  We’re actually moving him in Saturday, March 30 but it was simpler to choose the first of the month as the “official” date. 

My checklist included notifications:

The Regional Center (which helps provide Robert certain benefits and who I consider my safety net);

New Home;

Social Security;

Medi-Cal;

Day Program;

Doctor (GP);

Neurologist;

Of course, before these notifications, I talked to Other Brother about Robert moving in.  I explained my rationale for moving him in here (let’s be real: we have to cut out the middle man, aka, New Home).  I explained the extra assistance we will get (Robert would qualify for In-Home Support Services as well as respite care through the Regional Center). 

Other Brother said it sounded like we had it all planned out.  His only bit of advice: Keep the puppy away from Robert’s turkey sandwiches!  (Good thinking!).   

After the notifications, I worked at transferring medical supplies and prescriptions and setting up transportation to and from Day Program.  Fortunately, we will be able to keep Robert at his Day Program which he loves. I wasn’t able to get very far when talking directly to the transport company because Regional Center hadn't yet notified them of the change.  I went back to Regional Center (thank goodness for email) and made a second request to get that transferred.  I want to be prepared for when the transport will arrive so Robert can be ready!

The Regional Center advised me to contact In-Home Supportive Services immediately so we could get those services started as soon as possible.  I called and was able to get the application started over the phone.  There will be a form for the doctor to complete as well as an in-home interview but once those are done, we should be able to get a little extra help. 

I realized during this move process how grateful I am for being a control freak (I keep telling my husband that’s a positive characteristic!).  Maintaining control over a few items when Robert moved into New Home has now saved me an enormous amount of time.

I realized how much easier the move to our house is because I have Durable Power of Attorney and maintained that instead of transferring that over to New Home (yikes, can you imagine?). 

My favorite time-saver has been becoming Robert’s Representative Payee at Social Security (and not transferring it to New Home).  Since Social Security doesn’t recognize DPOA, I cannot recommend this enough.  It allows me to talk to a Social Security representative and make address changes on Robert’s behalf – over the phone!  I am sure it would have been a nightmare trying to transfer it back to me if I had given New Home this authority.

Unfortunately, you have to go to a Social Security office to first sign up to become a Representative Payee (make an appointment if possible to reduce the wait).  Once you have done that and are approved, it will be rare you will have to return to an office!  For more information on the program, visit here.  

I am also grateful for changing Robert’s GP last summer from the one provided through New Home.  Aside from being extremely unhappy with the New Home doctor (oh yeah, he was incompetent!), this has proved beneficial in more ways than I could have imagined at the time.  I am grateful I don’t have to spend the time finding a new doctor while doing all the other move preparation.

Transferring the prescriptions has been my number one worry and that is going to be a post all by itself.  (Everyone knows my worry can take up many, many pages.)

For now, I have a few things to cross off my checklist - plus, I need to get busy training the puppy to keep his paws off Robert’s food!

Universe, Are You Testing Me?

On Tuesday, I announce that Robert is going to live with us starting in April.

Robert is on the mend!

On Wednesday, the Wonderful New Home House Manager calls to tell me Robert is not feeling well and wanted to stay at New Home instead of going to Day Program.  Robert has had a cold/flu all winter and has periodically missed his Day Program to stay home and rest.  Between living in a home with six guys and going to a Day Program with 50 + adults (all of whom need assistance in some way or another), Robert pretty much lives in a germ factory.

By Wednesday evening, Robert’s cold had gotten worse so I decided to pick him up from New Home and keep an eye on him at our house. Robert tends to go downhill pretty quickly and because New Home is located pretty far away, if an ambulance is needed they won’t take him to the hospital associated with his doctors. This means I have to update new doctors on his epilepsy, medications, medical history, etc. while trying to get him treated for whatever ails him. 

If he’s at my house and we have to call an ambulance, they’ll take him to the hospital where both his GP and his neurologist are affiliated.  Emergency Rooms are hectic enough without having to start from scratch.  Driving the hour and a half round trip to get him up was definitely going to make things a lot easier if Robert suddenly took a turn for the worse.

Once Thursday morning arrived, I was grateful for the decision to bring him to our house.  Robert woke up with a fever, was extremely lethargic and his cough sounded awful.  I was worried about pneumonia again so made Robert a doctor’s appointment which, unfortunately, couldn't happen until late in the day. 

I started to suspect The Universe was testing me.

Robert was sick, I had a work event mid-day, Hubby was taking his mom to a doctor’s appointment out of town so couldn’t stay home with Robert and Robert had a doctor’s appointment late afternoon.

Oh, yeah, and one of our bathroom pipes sprung a leak. 

Yep, The Universe was really enjoying this.

I thought I might be able to take Robert back to New Home for a few hours so I could take care of the work thing (he technically still lives there, after all, so I may as well take advantage of them).  If so, I could pick him up once I was done at work and take him to his doctor appointment.  It would be tight but doable.

Except Robert could barely keep his eyes open much less get up and walk out to the car. 

I realized I wasn’t going to make the work event (much less get any work done).  Robert slept until it was time to get ready for the doctor.  Once there, I was grateful for the wheelchairs they have available if needed.  I wheeled Robert into the appointment and talked to the doctor about how sick he was (while Robert was groggily telling her he felt excellent).  She prescribed antibiotics to fight off suspected pneumonia and a chest x-ray to confirm her suspicions.  I took the opportunity to talk to the doctor and her nurse about the plan to move Robert into our house and ask for their advice on how to manage the medications.  I felt much better about the process after talking to them.

Robert stayed with us for another night and while Hubby supervised his dinner, I ran back to New Home to get more of his anti-seizure medications as well as the antibiotics. 

I’m exhausted before Robert has even moved in but think I did okay on The Test.  I didn’t eat as well as I should have and I let myself get stressed out for a minute about not doing all I had planned but I was able to adapt and adjust Plan A and go to Plan B.  

I also realized I don’t need to get an A+ or do 100% of what I had hoped to have a successful caregiving day and (bonus!) was able to get information on how to get Robert’s prescriptions transferred.

It really helped to also reach out for support from my fellow caregiving friends and got this bit of encouragement from Denise Brown of Caregiving.com, “If I might offer a perspective: I don’t think this is a test so much as a reminder that you are critical to Robert’s well-being.”

Well, if this is a test I’m going to count all of these realizations as extra credit. Not that I'm competitive or anything. J

Burying the Lead

Robert has lived in New Home for two years.

Before that, beginning in 2009, he lived in an assisted living facility for older adults (he had an exemption since he was under 50 years old) for two years.

Cards, anyone? 

In the last part of 2008 and early part of 2009, Robert had a long-term stay in a hospital due to a life-threatening infection which was perilously close to invading his brain.  Robert had been in a study at UC San Francisco for the Deep Brain Stimulator and the piece in his chest had become infected.  That piece of the device was removed but the leads going deep into the brain remained, in the hopes he could continue in the study. (We later learned Robert was in the “active” group and the DBS was actually helping to control his seizures). 

The infection returned with a vengeance and since these leads were a pipeline directly into the brain for this infection, Robert underwent emergency surgery to remove them. 

Before these events and recurring infections, Robert had lived independently (with some family oversight and a live-in companion) for many years.

Once he recovered from the infection (which took a couple of months of intravenous antibiotics and a stay at a Skilled Nursing Facility), a decision needed to be made about his living situation. 

It was a difficult decision but one which had to be made.  

Caregiving is a series of decisions.  How serious is the infection?  Does he need to go to the ER?  Where should Robert stay while he is on the intravenous antibiotics?  Will it be safe for him to live independently again?  What Skilled Nursing Facility is the best fit for him?  Should he be moved from his home an hour and a half away to a facility closer to me and my family?

And that was in the first few months of caring for Robert.   

Deep end of the pool – meet Robert’s Sister.  Sink or swim – go!

The decisions have not stopped since then but I’ve become more accustomed to fielding them.  The placement decision is one I haven’t ever been completely happy with.  I did all the right things when searching for facilities for him: created checklists, conducted interviews, had Robert visit the facilities, but there were always one or two (or several) issues that I had to deal with during his stays at the facilities.

I never found him the perfect home. 

My husband and I thought a solution would be to turn our garage into a bedroom for Robert.  That wasn’t as easy as it seemed (although my city is now aware they have a “Reasonable Accommodation”  code which, by law, they have to follow). 

Reluctantly, due to construction issues and costs, we gave up on that idea and I resigned myself to Robert living at a facility 40 minutes from my house with a few people on staff I had issues with.  (I’m not normally a difficult person but when the nurse tries to change Robert’s medication schedule because it will be easier for her, then I become quite difficult).  

I decided Robert would live with us on the weekends.  We didn’t have a room but we have a sofa sleeper and a freezer full of Rocky Road ice cream.  Robert enjoyed his visits (and ice cream) from Saturday morning through Monday morning (and all holidays) and we enjoyed his company.

Until I was informed we were allowed to have only 73 overnight visits a year (unless we paid a ridiculous amount of money to have him stay with us).  I had about 20 days left in the year when told this in the middle of summer – and we hadn’t hit any of the major holidays!   

Super.

During this time, the issues at New Home were really piling up.  I had to find a doctor for Robert not affiliated with New Home because their doctor was incompetent (and I do not say that arbitrarily).  The previous House Manager didn’t order briefs timely so Robert ran out (and she called me for assistance).  Seizure logs were not accurately kept and, worse, suspiciously looked made up when I did get them. 

Nurse Ratchet (who was amazingly still employed by New Home) was not doing her job and neglected to prepare the proper paperwork for Robert’s new doctor in order for him to get his medication.   (She was eventually let go after three of these incidents).

Fortunately, the floor staff were all wonderful and I could count on them to keep me apprised of anything going on with Robert. 

Management changes were made (thank you!) but I still was not completely satisfied with Robert’s care.

I created a pros/cons list of Robert living with us.  He wouldn’t have his own room but he was comfortable enough on the weekends so that didn’t seem to matter.  He needed to have his social needs met but his Regional Center confirmed he could keep going to the same Day Program if he lived with us.  I would have to keep track of his medications and incontinent supplies which actually terrifies me but, as my best friend said, “You can’t do any worse than his care facility did.” 

So true.

For months, my husband and I discussed Robert living with us.  We reviewed the pros/cons list over and over.  We discussed the idea some more.

Then I picked Robert up at New Home and, as we walked out the door, I noticed a used brief stuck halfway inside his jeans and the other half sticking out over the top of his waist band.  I changed his pants (he was wearing his own brief so I have no idea where the other brief came from unless it was his nighttime brief) but he had a terrible rash from where it had been against his skin.

A limit of 73 Days. Incompetent doctor.  Self-centered nurse. Running out of supplies.

The Dirty Brief Incident.

It was too much.  This seriously put me over the edge.

My husband and I asked Robert if he would like to live with us and he said yes.  He hesitated when I asked him if he would miss his roommate so that means, “yes” but I’ve already asked New Home if I can contact his roommate’s mom so they can visit each other.  The Wonderful New House Manager has offered to help care for Robert if we need her and she said we could bring Robert to visit his old roommate.

We don’t have a definite move-in date yet but it will be sometime in April.  (I just have to make sure his medication is transferred seamlessly).

I suggest you buy stock in whoever makes Rocky Road ice cream!

(Now that’s how you bury a lead).

Decisions in Caregiving

Everyone makes decisions day in, day out.  Small decisions (hmm, should I really eat that piece of chocolate right now?) to big decisions (which school should I send my child to?) to everything in between.

(Of course, the answer to the first question is always: Yes! How can I turn down chocolate?)

Decisions in caregiving can be much more serious with the possibility of significant consequences. 

What treatment should I get for my caree?

Is it time to step in to help my loved one or is it too soon?  Will they want my help or see it as an intrusion?

Is it time to find a care facility for my family member?

Do we try new medications to help with [insert condition/disease/disorder here]? 

In Robert’s case, he was on the same medication for years and still having seizures.  A few months after I took over his care, I not only had taken over his care after he lived independently with slight family oversight for years but I had moved him to a new city, placed him in a care facility, changed his neurologist and primary care physician.

Quite a few decisions which were not made lightly but which could have involved dire consequences if I hadn’t stepped in when I did.  (Short version: Robert and his companion had taken in a homeless woman to live with them and she got into a physical argument with Robert, giving him a black eye.  Other Brother and I got the woman out of the house and, because of a series of other events (recurring infections, the main one), Robert was moved out of the house he lived in for 20+ years.)

Long version can  be found here.

Did my Other Brother and I act too late?  Should we have stepped in before Robert got all those infections and the black eye?  Or did we act too hastily in not letting Robert live independently any longer? 

The timing of these types of moments is never lit up on the calendar with a big arrow pointing to a date and a note saying, “THIS is the day to step in.”

No.  We have to make decisions and we grapple with them and sometimes caregivers still question whether or not this was the time to step in with more help.  Or try the new treatment.  Or place a loved one in a care facility. 

Shortly after starting with a new neurologist, she had a great plan.  Let’s try New Meds!  The seizures may be stopped with this New Med!  The New Meds just came on the market and could work! 

After 45 years of Robert having uncontrolled seizures it was hard not to get caught up in the excitement.  A medication that might relieve Robert from having seizures?  I was reluctant to try something new because even though he still had seizures, he seemed stable enough.  However, I agreed. 

This was three years ago and he was on the new medication for a short amount of time.  Unfortunately, he had such a reaction to the medication (losing his balance, actually not being able to walk), he landed in the hospital. 

Okay, not the best decision but that’s how decisions in caregiving go.  We grapple with them and sometimes they work out and sometimes they don’t.  Robert was immediately taken off the New Med and left on the medication regimen that we know worked as well as could be hoped.  Robert’s balance continued to suffer so we made the decision to get him a walker which he still uses.

Other caregivers go through decisions about placement or treatment every day, giving them great thought, care and always, always doubting if it’s the “right” time or the “right” decision. 

I have invited a few fellow caregivers to be my guest here and share with you the decisions they are wrestling with now.  Over the next week or so, we will share what they are going through when making caregiving decisions. 

I’m interested to know what decisions have you had to make for your caree, your loved one.  Please share in the comment section below or contact me at robertssister@att.net if you're interested in sharing the struggle you've had with a caregiving decision. 

Now, about that chocolate . . . decisions, decisions. 

 

Two Appointments, Lots of Rain and a Few Surprises

Robert had two doctor appointments on Monday.  I schedule his GP appointments for Monday mornings so Robert can visit on Sunday and have an overnight visit.  I’m carefully counting the overnights since we are only allotted 73 for the entire year.  (I did find out that we can pay $182 per night if we go over the limit).  It’s great to have a back-up plan but sheesh – for that amount Robert should be staying in a fancy hotel not sleeping on a sofa bed in the middle of my family room! 

His second appointment was with the Memory Specialist and was set for Monday afternoon.  Even though I had to take a full day off work in order to accommodate the appointments it worked out perfectly. 

Except for the rain. 

I forget that Robert does not like to get wet (he won’t argue about his showers but he does want to dry off pretty quickly). 

We set out for the first appointment only to have Robert stop in his tracks once we went out the front door because it was raining. 

“Can you open the umbrella, please?”

I’m carrying Robert’s “just in case of an accident” bag, my purse, my bag with information for the doctor and trying to steer Robert toward the car.  I thought we could make a run for it.

“Robert, the car is just around the corner of the house.  Get moving.”

He won’t budge.  I expect to hear him start screeching, “I’m melting, I’m melting!” any minute now.

Instead he says, “My walker is getting wet.” 

Okay, okay.  The umbrella is now open.  I’m holding it over you and your walker (oh, never mind me over here getting soaked – thank goodness I have a hood!).

We get to the car and he makes his slow climb into it while I’m still juggling the (open) umbrella, bags, purse and now the walker which he has let go of. 

He gets in the car but I can tell he’s worried about his wet walker.  I assure him I brought a towel so he can dry it off once we get to the doctor’s office.  This seems to satisfy him.

We’re off to see Robert’s new GP since he no longer sees the New Home doctor.  Remember the guy who didn’t even realize Robert had been in the hospital, didn’t notice his pneumonia nor had any idea Robert had seizures even though he had been “treating” him for a year and a half?

Yeah, Robert has a new doctor now.  But I’m not bitter.

Robert has his own doctor now and sees her every 60 days since that is the rule of New Home (presumably following a rule set by the state).  The Most Awesome House Manager attends these appointments and is tasked with bringing the doctor’s orders prepared by the New Home nurse so Robert’s doctor can sign off on his medication refills. 

Robert has seen this GP three times now and she is really terrific.  She is friendly and personable.  She reads the chart (what a concept).  She listens to what I have to say.  She thinks it is unnecessary to see him so frequently but does anyway. 

The House Manager came to the appointment frustrated and without doctor’s orders.  Apparently, New Home nurse did not prepare the doctor’s orders this time.  Or last time.  Oh, and not the time before that.  (That’s three for three if you’re keeping score).

This is more frustrating for the House Manager than it is for me (although it’s going to get pretty frustrating very quickly if Robert runs out of his medications).   I’ve been trading calls with the area director to see how we can resolve this issue.  Unfortunately, this type of disorganization (or just plain incompetence) just creates more work for the House Manager and, frankly, is quite embarrassing in front of the doctor.

Doctor’s orders or not, by 10:00 a.m., the doctor had given Robert a clean bill of health and we had his next appointment scheduled within the 60 day timeframe.   The doctor’s office is mere minutes from my house so we made a quick stop so I could get a coffee and Robert could get a shake and we were home. 

The plan was to have an early lunch and then get to his next appointment in plenty of time (allowing for last minute bathroom breaks or paralysis in the rain).  Since I never know how long those appointments will last, I planned on having Robert over for dinner after the appointment and then taking him home. 

At the appointment, Robert did the usual battery of cognitive and physical tests.  There is always more than one doctor at these appointments (after all, it is a teaching hospital) and they confirmed he was not walking as well as he was last year.  There was a debate whether the loss of his right field of vision was encroaching on the center field of vision.  They obviously had a difference of opinion on the matter and stepped out of the room to discuss this.  When they returned, the vision tests were redone and the senior doctor’s opinion that the loss did not include the center field won out.

The right field of vision is still worse than it was last year which would have been good to know earlier in the day when I held up a banana in one hand and an apple in the other and asked Robert which he wanted to eat with his lunch.

He couldn’t even see the apple so he thought I was only holding a banana (and probably thought I was crazy for giving him a choice of a banana or . . . nothing).  Once I realized he couldn’t see the apple, I moved it so he could see it and he chose both. 

Robert does like to eat.

The appointment continued with Robert asked to write a sentence.  Usually, he writes “God loves you” but this time he added “if you are a Christian.”  I actually think he made the sentence longer because the doctor asked him to include a noun and a verb and a subject and Robert looked at him like he was speaking a foreign language.  (Note to doctor: Let’s pass on the diagram a sentence test next time).

Robert knew he was supposed to write a sentence and knew he was supposed to do something “extra” but didn’t know what.  He just decided to make it longer to appease the doctor. 

Once we were done, we walked out to the car and the rain had stopped.  Robert was convinced it was a blessing from God.  I tried to prepare him that it was still going to rain later but he wasn’t having any of it.  God stopped the rain and he wasn’t going to let me ruin the moment. 

In other words, I couldn’t rain on his parade.  Bah da bum. (I can’t resist a good pun).

I picked up a cheeseburger and fries for his dinner since by this time I was too tired to cook.  Robert got in the house and started watching the weather report while eating dinner.  After a few minutes, I realized the weather report was actually a special program because there were possible tornado sightings in the county where New Home is located. 

Great.  I get to drive 45 minutes into a rainstorm which may or may not include funnel clouds. (Apparently, I should stop questioning blessings when Robert declares one.)

After a few texts with the Most Awesome House Manager, I decided to keep Robert overnight again (shh! It’s a secret!) and take him back to New Home in time for his morning medications.  He was thrilled to stay another night and I was thrilled I didn’t have to drive into a storm (even though it meant waking up at 4:00 a.m.). 

Two appointments, lots of rain and a few surprises.  Not a bad day at all!   

Robert: What Having Epilepsy Means to Me

September is interview month at Robert’s Sister, apparently. The Family Caregiver Series will continue after we break this weekend to Talk About It!

Talk About what?  What in the world are you Talking About, Trish (and why are capitalizing letters in the middle of the sentence??)?

Robert’s Sister is participating in the Talk About It Foundation’s  first annual Talk About Epilepsy weekend.

Posts this weekend will focus on epilepsy and we’re kicking off the weekend with an interview with Robert.  (Yes, I admit it! I bribed him with a chocolate shake).  Robert has answered reader’s questions before which focused on his seizures and can be read here and here, but this time, the questions come from his tough, older sister.

The purpose of this interview is more about a big sister taking a break from the day to day tasks of worrying about medications and care facilities and the supply of Rocky Road Ice Cream to get to know her little brother a little bit better.

A couple of sips of chocolate shake and Robert is ready!

Robert’s Sister:   How does it feel to have epilepsy?

Robert:  I don’t want to have epilepsy.  I want it to stop completely.  That’s one of the main reasons why I had the brain surgeries. 

Robert’s Sister:  How did your family treat you when you were growing up? 

Robert:  They treated me pretty good.  I tried every medication but nothing was ever able to stop me from having seizures.  They kept an eye on me.

Robert’s Sister:  Did the kids at school treat you differently because you had epilepsy? 

Robert:  I had a lot of nice friends when I was in high school.  A lot of them were handicapped also and we went to gym.  In the back room we were able to play pool and I even taught some of the guys how to play pool.  Some didn’t know how to play right so I taught them correctly.  They really liked it too and thanked me a lot for that too.   My classmates were nice to me and nice to each other.

Robert’s Sister:  Do you think the medications affect how you feel?

Robert:  It doesn’t hurt me any.  When I was younger, I was still having seizures at times before the brain surgery. I always controlled my mood.  I thank God for that.

Robert’s Sister:  How do you feel about having brain surgeries?  Do you think they helped? (Note: Robert has had two brain surgeries)

Robert:  The brain surgeries did help a lot. The first one was January 4, 1990.  I remember I was awake during the brain surgery.  The surgery was ten hours long and I was awake and the doctor showed me 3 x 5 cards, back and forth.  He had me move my fingers and toes. 

Robert’s Sister:  What made you want to be involved in research studies?  (Note: Robert was involved in a research study for the Deep Brain Stimulator at UCSF as well as a variety of new medications)

Robert:  To see if they would stop me from having seizures or not. 

Robert’s Sister:  How did it make you feel when Dad said he didn’t want you to participate in the research studies? (Note: Our dad didn’t like the idea of Robert participating in research studies)

Robert:  I felt like Dad didn’t want to help me.  I believe I did the correct thing. 

Robert’s Sister:  How do you feel about living in a care facility?

Robert:  It’s okay.  The people are nice there.

Robert’s Sister:  What is your favorite memory? 

Robert:  I like to remember Mom.  I still remember her in my mind.  It’s too bad she had cancer in her stomach and passed away early.  (Our Mom passed away from liver cancer in 1999 when she was only 56 years old). 

Robert’s Sister:  Do you ever wish you didn’t have epilepsy?

Robert:  Yes.  I remember when I was 15 I was at Dad’s house in Modesto.  Dad took me to a friend’s house and we went to the Jacuzzi for a while.  I told him I was going to do a couple of laps in the pool and went to the deep end.  A seizure hit and I fell in.  My friend saw me lying at the bottom of the pool and told my dad.  Dad dove in and he was still in his work clothes.  He dove in and pulled me out.  The paramedics had to start my heart again and the Lord told me it wasn’t my time to die yet and I was here for a reason.  

Robert’s Sister:  What do you think that reason was?

Robert:  To help other people. 

Robert’s Sister:  What do you want people to know about epilepsy?

Robert:  Epilepsy is a seizure disorder. A person could have a seizure and fall down. They may injure themselves also.  I remember I cracked open my head 36 times in the past. (Note from Robert’s Sister: he wears a helmet now; probably about 35 times too late).

Robert’s Sister:  Is there anything else you want to say?

Robert:  I thank God for saving me in everything so far. 

Robert’s Sister:  I have one last question and it’s a really hard one.  You better take an extra drink of your shake for this one.  Who is your favorite sister?  J

Robert:  (Laughing) – You!  (More laughter)  No, George Washington!  Only joking!  (Still laughing)  You’re my favorite sister.  My only sister also.  (Robert's Sister: Now, I'm the one laughing!).

Many thanks to Robert for answering my questions!

If you have a comment or question for Robert, please leave it in the comment section below.  Tomorrow we will continue our participation in the Talk About It Epilepsy Weekend and will post epilepsy facts and resources.

Vacation!

Sheesh, after all the planning and prepping and packing and organizing, I need a vacation!

Oh, wait . . .

Can I come too?

Yay!  I am going on vacation! This isn’t going to be any vacation, either, but a vacation of a lifetime.  Both daughters graduated from college this year and have planned a trip to Europe as a celebration for years. 

Hubby and I are tagging along (partly due to a generous gift from Other Brother and partly because I’m having a difficult time coming to terms with the girls growing up!).  Yes, I plan to follow them around wherever they go throughout their life (shhh, don’t tell them my plan!).   

The vacation looks a little different for all of us (they left before we did and one daughter and her boyfriend are staying longer than the rest of us) but we meet up in Rome and will all be together for a few days touring the sites and drinking some wine and then will board a giant ship for a seven day cruise to France, Spain and other parts of Italy. 

I guess I should have paid attention in French class or taken Italian!  Well, let’s see, I know “Ciao” and “Vino.”  I better learn “please,” “thank you” and “where the heck is the bathroom?”  I’ve been practicing a few words but I can’t seem to get the accent down and end up stumbling over the words and sounding exactly like some American who doesn’t know the language.   

I better stick to drinking wine and not talking.

Vacation prep has been going on for months.  Aside from actually planning the vacation and transportation and tours (not to mention preparing for my absence at work), I have to be sure Robert is aware we will be gone and is well-stocked with his supplies.  His care facility and Day Program have been notified I will be gone and given contact information for Other Brother in case of an emergency.  They have been warned Robert may get grumpy because his routine of visiting us is being disrupted.

I had to tell Robert a few times that we would be leaving and when we would be gone.  I also wrote it on all of his calendars so he will be reminded when he looks at the calendar.  If he happens to call my office (which happens frequently) then my best friend will talk to him and remind him I’m gone for a while and will offer to take care of whatever he may need.

It’s been an ongoing battle to keep guilt at bay, especially since Robert’s birthday falls while we are away.  Don’t think this didn’t escape his attention – when I first told Robert when I would be on vacation he was quiet for a while and then said, “That’s during my birthday.” 

Yep.  He can’t remember what year it is or the name of the president or what he had for lunch but he certainly knows when his birthday is!

That’s okay; I know Robert will be fine.  My wonderful Mother-in-Law is going to take birthday cake to his Day Program and his house manager is going to treat him to a cheeseburger and Rocky Road Ice Cream that night.  Plus, we’ll have a celebration once we return from vacation.  He’s going to be one happy guy.

We’ve arranged for the animals to be cared for and Other Brother even gets to have Sassy (and all of her medications) again for a while (we’ve shared custody of her ever since Mom died which means Sassy is about 102 years old).

My suitcase is packed and weighs in just under the weight limit (I refuse to pay extra to check another suitcase or pay a penalty for an oversize bag).  Admittedly, my shoes have to be in my carry on to stay within the weight limit but I have to bring several pairs of shoes!  I mean, I have to! I can make a lot of sacrifices but paring down my shoe choices is not one of them.

Thankfully, a friend reminded me to leave my guilt at home because otherwise my bag would be over the weight limit!  I’m taking her advice and going on vacation with confidence the animals and Robert will be well cared for. 

While I’m away, I have scheduled interviews with other family caregivers which (hopefully) will automatically post.  Enjoy meeting these family caregivers!

Also, check back over the weekend of September 7 for epilepsy related posts (including an interview with Robert) in support of the Talk About It Foundation’s first annual Epilepsy Awareness Weekend.

Ciao!