Major Changes

I’ve been working on this post for a couple of weeks. It is very hard for me to write and might be hard for you to read. 

We have made the difficult decision to find a facility for Robert. 

Ugh. See? That is a hard sentence to write! I hope it wasn’t too hard for you to read. 

Robert has lived with us for more than nine years. For several years before that I managed his care while he was in Skilled Nursery Facilities, hospitals, Assisted Living and a Residential Care Facility. 

How did we come to this decision? Why now? 

We first considered hiring another caregiver. We had a caregiver before the pandemic and Robert loved her. He also went to a Day Program five days a week. Both Evelyn and the Day Program were very helpful. Then the pandemic hit and we hunkered down. His Day Program switched to a virtual program and his caregiver hung up her caregiving hat. I really don’t think a new caregiver could give us as much help as what Robert needs. (Not to mention, much of his needs are through the night and I can’t have a live-in caregiver.) 

I haven’t posted much so this might be a shock to people who don’t see us every day. Heck, the decline has even been difficult for us to see and we are with him every day. 

My daughter has been gently telling me for a while now that it is probably time to think about another living situation for him. She sees how physically demanding it is on Richard and I and she worries about our health. Even Robert’s physical therapist knows how much we do and ends up giving me tips and exercises at Robert’s therapy sessions so I don’t hurt my back when moving him. His neurologist even said we might want to start looking for a place for him before it becomes an emergency situation. 

Hmm. I hear all of them saying something but I can’t quite put my finger on it. 

Not surprisingly, it has been difficult for me and Richard to admit there has been such a dramatic decline. 

Since moving in with us, Robert has gone from using a walker on his own to needing both me and Richard to transfer him from his wheelchair to the bed. He can walk about ten steps using his walker but only with one of us behind him, practically holding him up and definitely keeping him balanced. 

Robert’s swallow disorder has caused numerous bouts of aspiration pneumonia which land him in the hospital. A related and equally upsetting change: Robert can no longer have his beloved Rocky Road ice cream! Those bits of marshmallow and nutty goodness make him choke so it’s just plain chocolate now.

In nine years, Robert has gone from mostly dressing himself with my supervision and encouragement to me bathing and dressing him. 

Robert’s short-term memory has become non-existent. He will ask how we’re doing dozens of times during the day, even if we just left the room for a minute and returned. It’s groundhog day on repeat throughout the day. 

He loves to look at pictures which we have throughout the house but he needs reminding who everyone is and sometimes doesn’t make the connection that Richard and I are the same people in the photos. 

Robert loves his game shows and talks to Steve Harvey likes he’s his best friend but we have to be careful not to watch any of our favorite crime shows around him. If we do watch something with a disturbing scene we have to reassure Robert that it is not real. 

We try to stick to game shows.  

Meals take longer and longer. (I’m talking hours.) Robert is easily distracted by crumbs or folding his napkin just right. I recently learned this is called perseveration. You can see it in action here. 

Sleeping through the night is hit or miss now. We started using melatonin (at the suggestion of his doctor) which helps some. He still sometimes wakes up at 2:00 a.m., wide awake and asking if it is time to get up. 

He doesn’t make the best decisions. I used to be able to leave him alone in the bathroom until I caught him trying to pull up his pants and stand up by himself (he can’t do that without falling so that is a disaster waiting to happen.). 

Robert went from manageable urinary incontinence to occasional bowel incontinence to trying to stop himself from doing either once he’s in bed. He started to put tissues down his brief to stop urinating or having a bowel movement. I placed the tissues out of reach. He then just used his hands to stop urinating and to take the poop out of his brief. (Sorry for the graphic details but caregiving is messy and I don’t want other caregivers to feel alone if they’re dealing with the same situation.)

I immediately ordered onsie pajamas that zipped up in the back. There’s no way he could get the pjs off or his hands down his brief. I paid an exorbitant fee for overnight shipping but this was not a situation that was safe or healthy for him or us. 

The onsie works but, unfortunately, they make him so hot! After some research, I tried a different method to keep him clean which involves putting a folded sheet across him and tucking it in under the mattress so he can’t get to the brief. It seemed like a good idea until I saw him on the camera easily maneuver around that little hack. 

Back zipper onsie it is.  

I have tried to stay one step ahead of his decline but it is accelerating at a rate I can no longer keep up with. 

There’s been a decline. I mean, a dramatic decline in movement, cognition, memory and impulse control. All of it. 

And he is not going to improve. This is his neurodegenerative process due to his numerous concussions, uncontrolled seizures, brain surgeries and medications. 

What is hard for me about this decision is that he is not difficult to care for every minute of every day. He is still able to have conversations although his mumbling is much more prevalent. He is laughing at a game show as I type this. He is safe in his wheelchair, eating a snack and drinking his water while doing his puzzle book and watching whatever game show Richard put on. Taz walks by to go outside and Robert introduces himself as Robert Allen Wright then proceeds to spell it out for him. Robert pets him and tells him he loves him very, very much and asks how he is doing today. Sure, he seems to expect Taz to answer him but he doesn’t get upset when Taz stays silent. 

Because I am who I am, I just keep plowing through and taking care of him while not realizing or seeing his dramatic decline. That’s what I do. I see a problem, work a problem and get through the problem. (And deny the problem if I’m being honest.) 

I always had a vision of how my caregiving journey would end. Richard and I would care for Robert – in our home – and he would continue to end up in the hospital with aspiration pneumonia but one time he wouldn’t make it. I would be with him at the end just as I was for our mom and then, years later, for our dad. I am not trying to be morbid and I didn’t know exactly when this would happen but it is what I prepared myself for. With Robert’s health issues and numerous hospitalizations for pneumonia and close calls with sepsis, I thought this was a pretty good idea of how things were going to go. 

I like to plan and prepare. I should be an honorary Boy Scout. 

On the other hand, we all joked that he would outlive us all because, well, he’s Robert. 

Funny, though, how these “plans” for the future don’t always follow the script in our heads. 

So the script has to change. I don’t anticipate being able to find a suitable place for Robert until after the first of the year but I am starting the search. I have contacted his Regional Center but that is a slow process. 

Our caregiving will not end but it will take on a new direction. Richard and I will still oversee his care and make sure his needs are met and he is happy. I have a feeling Robert will bring joy to his caregivers just as he does to us and all of you.

I hope you understand our decision. 

Epilepsy Awareness Month Day 21: Managing Incontinence

Before we get to today’s topic, I just want to say: OH MY GOODNESS!  We are two-thirds of the way through Epilepsy Awareness Month! My purpose this month has been to post a video each day about the impact epilepsy has had on Robert.  My intent was also to keep the videos to two or three minutes. 

Well, one out of two isn’t bad.  

So many choices - at the pharmacy and online

There is just so much information to share that it is difficult to keep the clips short but I am still trying!  I sincerely appreciate everyone reading and watching and sharing in order to help spread epilepsy awareness and education. 

Managing incontinence has been a struggle for us.  When Robert was younger, he would lose control of his bladder during seizures but that is different than general incontinence. When I first took over Robert’s care, I had no idea he was incontinent.  He started out in a Skilled Nursing Facility since he was on long-term I/V antibiotics and the staff called to ask if Robert was incontinent. 

I answered no, not at all. Why do you ask?

They then told me how he was not able to make it to the bathroom and how he was wetting the bed overnight.  I still didn’t consider him incontinent; I just thought he was having accidents. 

The first step to managing incontinence is to recognize what is happening.  Even after agreeing that Robert is incontinent, I kept him in pull-up style briefs so that he could go to the bathroom on his own and only have the pull-ups in the event of an accident.  I was trying to keep Robert as independent as possible and ended up just never actually catching up to the incontinence. 

Once I realized Robert was really, truly incontinent I would warn all health care workers when Robert was in the hospital or in a SNF.  I explained that he is especially wet overnight and they would nod their heads and tell me they would be able to take care of it.  Then the next morning they would tell me, “Wow! He is definitely incontinent.”

Welcome to my world.

Robert’s incontinence is due to a combination of the signals from his bladder not reaching his brain fast enough and not being able to move quick enough to get to the bathroom in time. This is all part of his increased cognitive impairment and overall decline due to his uncontrolled epilepsy.

This is the impact epilepsy has had on Robert.

Here are few tips to help manage incontinence:

1. Consult with a doctor about the incontinence.  The physician should be aware of it in order to find an underlying cause that needs to be addressed;
2. Figure out what is covered by insurance. Check with a medical supply store or pharmacy to see if incontinent supplies can be covered by Medicare, Medicaid or other insurance plan. Robert gets a monthly allotment of incontinent supplies paid for by Medicare and Medi-Cal. While I am grateful for the assistance, there are never enough supplies. Richard and I spend between $150 to $200 month on extra briefs, bed pads and gloves and could spend more. We realize not everyone can spend extra on supplies. Get as much as possible covered by insurance and then prioritize to figure out what supplies are needed and how much extra money is available to spend on them;
3. When shopping for briefs, size does matter. It is very difficult to put a brief on another person if it is too small. In addition, a too small brief will not be adequately absorbent;
4. Absorbency is critical. All briefs are not equal! The monthly supplies we get include a medium absorbency brief (it is classified as “maximum” absorbency but it is not.)  We order a more absorbent brief online and use those as much as possible but they are expensive so we can’t use them all the time. Instead, we use the less absorbent briefs when we are home during the day and we change Robert several times throughout the day;
5. Invest in cloth bed pads. I didn’t do this until recently and am kicking myself for waiting so long! These are so much more absorbent than the disposable bed pads which is good for both Robert’s skin and the bed;
6. Use a barrier cream. Urine is very harmful on the skin and a barrier cream can keep the skin healthy. 

I would love to know what tips you have for managing incontinence.  Please let me know in the comment section.

Thanks again for helping to spread epilepsy education and awareness! 

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).