Thoughts On My New Role As A FullTime Caregiver

Yesterday morning Bill and I completed a task that was delayed by his accident last month, updating his end of life documents.

Our lawyer brought Bill's end of life documents out to our car for his signature. Two witnesses also came out to stand by our car in the sunny cold air which was parked in front of the lawyer's office on Rehoboth Avenue in Rehoboth Beach, to witness Bill signing his documents. That task done I decided to take the three block ride down to the Rehoboth Beach boardwalk and take a walk. I love walking on the boardwalk during offseason days like yesterday. The ocean, with the waves rolling in on the cold sand, is the same but the crowds are gone. Just a few brave souls walking the boards with the cold ocean air winds, so tranquil and peaceful. Something I need during this change in our lives. But while I was waiting for copies that were being made for me of Bill's end of life documents, I watched the people bustling around my lawyer's office. I thought to myself, "I used to be like that. I had a job for many years at a bank in Philadelphia. I commuted every day to Philadelphia from Downingtown to my job as a trust operations manager. I worked right in center city Philadelphia with all that hustle and bustle. I would manage and supervise thirty some people to get that day's trust remittances, statements, and fees out the door for that day. I would meet friends for lunch. I would take the R-5 train home at the end of the day. Bill would be waiting for me at the train station in his Jeep Cherokee. We would ride home to our two story gambrel roofed farmhouse on seven acres of wooded land. Our three Pomeranian dogs would be so excited to see me, yapping and jumping all over me.  I would take a shower, come down from my upstairs bedroom/bathroom and make dinner. Then perhaps I would watch a little TV or in the summertime, with daylight savings time, do some years work. I would go to bed around eleven o'clock. Get up at 4:30 AM the next morning, have breakfast and catch the 6:02 AM R-5 Septa express train for the hour commute to Philadelphia. Then I would do it all over again, five days a week. I thought nothing of that routine. That was my life. Now, I have memories. This is the week I would have been in Palm Springs for a two week stay with my Canadian buddy Pat F. That plane left yesterday without me, because of COVID. Just as well, because if COVID wasn't here I couldn't have went anyway. Who know when I'll ever be able to go again. Little did I know last year at this time as Pat and I sat in the courtyard of a popular local Palm Springs coffee shop, luxuriating in our easy life that my life would take such a turn. I would never have guessed in a million years a global pandemic would totally uproot life as we know it on our planet. And that I would be the full-time caregiver for my lover/parnter/companian/husband  of fifty six years. That today, instead of enjoying a mocha latte in Palm Springs I would be cleaning pee off our wall to wall carpeting that leads to Bill's bathroom, and changing his Pampers underpants and yoga pants and trying to explain to him that he should push his red Med-Doorbell button alert that I have hanging around his neck so I can help him go to the bathroom (my life now revolves around attending to his bathroom needs) and we wouldn't have to go through undressing him from his urine soaked yoga pants and Pampers and putting new ones on him. He said he "thought he made it" to the bathroom urinal jug that I have there for him.  He still hasn't figured out to hold the jug.  He was so exhausted after changing that he listened to me to push that red button that's hanging on a lanyard around his neck. It's going to be much easier on him (and me) if he lets me know when he "has to go." Five years ago, when I tore my left leg quadricep muscle, I had a cast on for twelve weeks. The first several weeks Bill had to help me go to the bathroom. I would call him on his phone (that's when he knew how to operate his iPhone, he doesn't now, I got rid of it several months ago). Bill would do the same for me if I was in the situation he is in now. 

A friend of mine (Glenn), who recently lost his husband of thirty-one years, and who he was a caregiver for about four years, told me "this is the price we pay for having such a loving relationship." I agree with him. I've known for years that Bill and I are one of the lucky few who have a long, loving relationship. 

Since Bill's medical emergency last month, my most of my waking hours are consumed with taking care of Bill. I've been advised to "take some time" for myself but it's difficult when I am the sole caregiver. I was able to do that yesterday when I parked our car, sunny side on Bill's side. He loves to sit in our car in the sun. I left him there, at the parking lot at the end of the boardwalk, and embarked on my first walk in weeks. My legs were begging for the exercise. And oh it felt so good to walk, with the ocean breeze briskly stinging my face (the portion that wasn't covered by my mask).  

I took some videos, one of which is at the beginning of this blog. During my walk I thought of friends who I used to contact when I was in Rehoboth Beach talking a walk "on the boards." I couldn't contact Ed C., he died several years ago. He had a nice cottage three blocks from the boardwalk. I couldn't contact Wayne J., he died in 2015. He also lived near the boardwalk. I also couldn't contact my best friend Bob Mc., he died seven years ago. A wave of sadness washed over me. I thought to myself "I have no one to call. These people all going about their lives, taking so much for granted and I am entering the final chapter, act, phase of my life."

As I type this blog entry, I hear the rumbling sounds of Bill's walker on our now rugless floor boards, doing his daily exercise. We've been waiting all morning for our local heating and air conditioning service company to perform their annual maintenance on our heating system. They were supposed to be here between 8:00 AM and 12: AM. It is now 11:32 AM, no service company. No phone call. I called the company and they said they're still coming out, but they're just running "a little behind."  

Bill's quality of life is greatly diminished. He's frustrated because he can't do what he used to do. 

Yesterday was his first full day of taking his medications. He couldn't sleep last night. The one medication I didn't give him was a mood drug because I thought that's what they gave him at the rehab facility where he was staying to keep him calmed down because he was "agitated."  Bill hasn't had a problem sleeping since he got home but he did last night. And of course if he isn't sleeping, I'm not sleeping either. We decided that he should take the Seroquel. That did the trick. He went to sleep. Of course he's confused now and sort of out of it. He had an "accident" this morning. Didn't quite make it to the bathroom for his pee break. He still can't quite get the hang of the urinal jug. 

By the way, the service guy just came. The window of time was 8 AM to 12 PM. It is now 12:20 PM. Why am I always on the end of the window? Wherever I live, I'm on the end of the window of time. Oh well. 

After he leaves I'm going to go down to Staples and buy another roll of plastic carpet covering to extend Bill's walkway from his downstairs bedroom to his bathroom, trying to prevent any more urine hitting our wall to wall carpet. Trying to take precautions and please no warnings about Bill  tripping on the plastic rug covering. I'm not removing the wall to wall carpeting. I've already removed all the rugs upstairs where he exercises with his walker.

Still no word on his hearing aids. He is so frustrated that he can't hear as I am trying to communicate with him. That's another phone call I'll have to make from Caregiver Central here.

This is the sixth day since Bill came home from the rehab hospital. We're getting a routine worked out. Of course my whole life now revolves around caring for Bill. Maybe I can snatch a bit of time here and there to update this blog and catch up with my friends Pat, Larry, Don and Glenn on FaceTime. Don called me last night on FaceTime. Don is 84 years old and lives in center city Philadelphia in a co-op. He's doing well but he is 84 years old. I'll be 80 years old next year. I wonder what is in store for us? I certainly don't see a caregiver in my future. Nor do I want to. This is no quality of life for Bill. But at least he's here in the comfort of his own home even if he can't do the things he used to. I feel so bad for him but I tell him every day how much I love him which I am so thankful for to have that opportunity. I thought I had lost him forever last month when I found him unconscious on the floor. 

This is the best we can do at this time. I guess I always knew this day was coming. Could be a lot worse. Just looking forward to getting into a routine and having a new normal. That's the most we can hope for at this time.

Bill and few minutes ago