Caregiving Decisions: All Day, Every Day

Decision fatigue can creep up on caregivers. I know when I can’t even decide what to make for dinner that my decision making ability is on overload. (I usually end up choosing breakfast for dinner at that point – easy and comforting!)

The pandemic has added even more decisions for caregivers to make.

Shortly before the stay-at-home order in California, I made the decision to keep Robert home from Day Program. They hadn’t yet closed but he is prone to pneumonia and it is virtually impossible to social distance at Day Program.

I decided it was safest for Robert to keep him home.

There’s no set reopening date for the Day Program but, at this point, I can’t send Robert back. Not any time soon anyway. He loves being with friends but I can’t jeopardize his already precarious health. I am not worried about his lack of socializing since, with the three of us home, Robert is more engaged in our conversations, enjoying watching shows with Richard while I work from the home office and loves petting Taz while telling him “I love ya a lot, Taz” several times a day. He sleeps in when he needs to and can take as long as he wants to eat a meal (now clocking in at close to three hours – per meal!). As an added bonus, my conversations with him involve phrases other than “hurry up, we’re late!”

For over two months, I decided it was best not only to keep him home from Day Program but also his weekly Physical Therapy appointments. However, I thought he would be fine since he walks more at home than he does being in a wheelchair all day at Day Program.

After about two weeks at home, though, he was having more trouble with his balance and with his legs “working.” Things got worse as the weeks went by. It took both Richard and I to get him out of the recliner to stand. It took both of us to help him walk down the hallway, all the while telling him how to walk and sometimes patting his leg to “cue” him. We had to literally tell him how to move.

Move your right foot.

Move your left foot.

Keep your head up.

Push the walker.

Move your right foot.

Move your left foot.

Keep your head up.

Push the walker.

Robert’s brain was having trouble communicating with his legs. I worried that it was because I didn’t take him to PT; I worried that it was permanent; I worried I would no longer be able to care for him like this.

I talked to his movement specialist and she thought it was a progression of his Parkinsonism. She felt going back to PT might help.

I wasn’t convinced it would be safe to take him so mulled it over a while longer.

Soon thereafter, Robert fell three times within a week. The third time landed him in the ER to get checked out (nothing broken; no concussion).

I called PT to see what their protocols were so I could weigh the risks. They provide everyone with masks, limit the number of people in the waiting room and gym area and thoroughly sanitize after each patient session.

I decided it was time to get him back to PT.

He was happy to return to “work out” and I was happy to learn that he still had muscle strength so I didn’t need to feel guilty about not taking him to PT.

(Guilt is so often an unwelcome companion of decision-making.)

The therapist mentioned that he should be sitting up instead of in a slouched position which makes me think the recliner might have had something to do with exacerbating his decline. I also decided to slightly reduce one of his anti-seizure meds that I know affects his mobility. It had been increased to the current dose in January but maybe a slight reduction would give him the “boost” his brain needed. The risk is that we will see an uptick in his seizures.

I have to decide between mobility and an increase in seizures.

For now, Robert is going to PT weekly again, his problematic medication was slightly reduced and he does not sit in the recliner (thankfully, he hasn’t even asked about it!).

All these decisions have helped. He is still not as mobile as he used to be and I haven’t dared see if he can walk down the hallway yet but he’s better at transferring and standing up.

With all the mobility issues, I decided to let go of his daily showers since he doesn’t have the stamina for that and I let go of the idea of putting him in pants and a shirt every day since I don’t have the stamina for that. Some days he is in pajamas all day and that’s fine for both of us.

These are just a few of the decisions Richard and I grapple with while caring for Robert during the pandemic. There are others, of course. Do we all wear masks when we venture out? (That’s a resounding yes.) Do we go out to eat? (No, that is not a good decision for us right now.) Do we order take-out? (We didn’t for a couple of months but we do occasionally now.) Do I keep Robert’s non-essential medical appointments? (No, it’s only essential appointments for now, of which PT is included.)

Caregivers make decisions every day, all day long. They may not be the decision that other caregivers would make but each caregiver knows what is best for them and their loved one.

What works for someone else may not work for you. Sometimes we might even make a decision and then change our mind! That’s allowed!

And sometimes you can give your brain a break and let someone else decide what is for dinner (let me help you: breakfast for dinner is always a good decision!).

Robert is Back Home!

After nearly two weeks in the hospital and 48 days in a Skilled Nursing facility, Robert is home!

Packing up to leave the SNF

For weeks I wondered if he would be able to come home or even if I could continue to care for him at home.  By the time he went into the hospital on July 1, he couldn’t walk. Heck, he couldn’t even transfer from a wheelchair to the bed.  We were dressing him, cleaning him, brushing his teeth and dealing with days of excessive sleepiness and grogginess.  Not to mention, his extreme crankiness (and mine!). 

I didn’t think I would see the old Robert again and I certainly didn’t think he would walk again. I even came to the realization that continuing to care for him at home was not in the best interest of anyone. (That was a really tough realization and I will write about that more in depth soon.)

Robert started a new medication called Sinemet while he was in the hospital. It is supposed to help with Parkinsonism which is one of his new diagnoses. The goal was to also get Physical and Occupational Therapy while in the SNF.  Upon discharge from the hospital, the goal was to bring him home.

A lofty goal considering he had to be discharged using a gurney because he couldn’t transfer from the bed to a wheelchair.

Robert's last day in the SNF - Excited to come home!

Once settled into the SNF, Robert loved being served meals in bed and watching television. However, he was irritated with the physical therapy staff – at first.  They were making him do things that hurt his muscles or (worse) stopped him in mid-routine of brushing his hair for the third time or shaving for the fifth time. (Some people have trouble getting their caree to bathe or do their own personal grooming. I have the opposite problem – Robert could spend hours on personal grooming if I let him!)

The physical therapy team persisted.  Robert got into their routine and, for the most part, was cooperative and even enthusiastic. We celebrated each milestone from getting out of bed to learning to use a transfer pole to leg exercises and eventually walking with a walker!

There were days he didn’t want to do the exercises but I participated with him one day and suggested they do PT before breakfast since he was already awake and dressed and just waiting around for breakfast to be served.  That seemed to work except on the days when his excessive drowsiness came back to haunt him (the doctor suspects that might be caused from high ammonia levels so we’re keeping an eye on that).

The physical and occupational therapists came to know Robert and worked around his drowsiness and his occasional reluctance.  They commented on how polite he was and how hard he was working.

The combination of Sinemet, the PT and OT and Robert’s own persistence has worked miracles. 

Robert walking again!

My hope was to get Robert back to where he was in June – using a wheelchair and being able to transfer without us having to lift him. Then I knew he could come home.

He has exceeded those hopes and blown them out of the water! He is walking with a walker but we’re using a wheelchair for long distance as he still gets tired easily. He is dressing himself – including those difficult socks! He is brushing his teeth by himself and is not nearly as sleepy. He actually moves quicker and is staying awake and alert throughout the day. Robert is cooperative and pleasant and is continually surprising us with his progress.

Robert is happier than I have seen him in a very long time. He is grateful to be home. He said he liked the SNF but he likes being home “a lot more.”

Robert was happy to see all three dogs (yes, even Taz!) and said they were all “good dogs.”

Robert's first meal back home: Cheeseburger & shake --
and a little bit of Rocky Road ice cream

Robert told me and Richard on his first night at home, “It is a very happy day to be back home.”

Robert is back – not just back home but back to himself and that makes for a very happy day indeed. 

The reality is that Robert will continue to need physical therapy and for us to help him with “cues” so he doesn’t slip back into old habits. He will need to continue to be monitored to see if the Sinemet needs any adjustment. We still know with all of Robert’s diagnoses, there is no “cure” and we will see a steady decline but we have reset the starting point. We have drastically shifted where we were just a few months ago. 

Even though there is no cure and the reality is that the future holds a decline and probable hospitalizations, the moment right now is what we are celebrating. And if there’s one thing Robert has taught me, it is to appreciate the moments.

The future cannot take this moment from us.