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.
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.
