Thursday, February 25, 2021

Bill Walking Around The Cul De Sac

 

Tonight would have been my regular work night at the hotel. I do miss my bi-weekly job working the front desk at the boutique hotel in Lewes where I've been employed since 2007. However, since Bill needs my full-time care, leaving him alone for anytime at all is out of the question. 

Now that we don't have the home health aid workers calling and visiting every other day, we're able to settle into a routine, which is the goal of both of us since Bill's accident and his decline in health.

I've had a call from a clergyman connected with the hospice program we're under as well as a call from a social worker. We don't need that help right now. Tomorrow we meet Bill's nurse for the first time. She is the person I will call if Bill has another "event" like the last time he ended up in the Emergency Room. No more Emergency Room visits. 

We're already cutting back on Bill's medications and what medications he has we're not renewing when they run out. 

Our regular routine consists now of me getting up around 5:30 AM - 6:00 AM in the morning. Sometimes Bill is still in his recliner chair (where he sleeps) or he's upstairs in the sunroom, like he was this morning. 

Every third day I help Bill with his shower. He needs me to undress him, and get him in the shower. It's always a challenge to get the water just right in the shower. This morning there was a blast of cold water and did I ever hear it from Bill on that one. YOW!  Of course Bill doesn't want to take a shower at all, he never was one for personal hygiene. But as long as I'm taking care of him, a shower at least every three days is the rule.

Perhaps the hardest part of the day is putting those special stockings on him for the edema in his lower legs. Bill hasn't cut his toe nails in years and now his toenails are like eagle talons. Then the stockings themselves are so tight. And now his right leg is weeping, and one open wound about the size of a half dollar which I put a gauze pad on and elastic band around. 

Bill still get confused with his Depends and his yoga pants. Sometimes the Depends are down and the yoga pants are up. It's a cognitive problem. Anything that requires connecting the dots, confuses Bill. He struggles to understand but usually fails. I spent about a half an hour showing him how to press the "ON" button on the warming pad for his lap, but he just doesn't get it. Part of the frustration is he still doesn't have his new hearing aid. His old one was broken while he was in that rebab facility where he spent two weeks. Next week we have an appointment at a local hearing aid center. Finally, I won't have to keep shouting at Bill of going up to his left ear to talk to him, a relief for both of us.

Daily now Bill exercises with his new size 14 Crocs and walks outside down around the cul de sac in our neighborhood. Daily we also are a ride (or two) either going to the local supermarket or my favorite thrift store. Bill especially likes sunny days. We've had a lot of rain around here lately but today was sunny and mild. 

Bill usually goes to bed early around 7 PM. I used to go to bed at 11 or 12 at night but now I go to bed around 10 o'clock and I am exhausted.

This morning I talking to my younger brother, who has his own serious health issues, for advice on how to navigate my new normal life here. John was and is the care pastor of a large southern fundamentalist Baptist church in Greenville, South Carolina. He and his wife took care of our Mother during her final years. I sympathized with him and his wife while they were taking care of our Mother but I never realized just how much effort it does take to be a full-time caregiver. One thing I am so thankful for though is that Bill isn't in pain. Also, he knows who I am. I don't know if I could manage taking care of someone who didn't know who I was. Sounds uncaring but that's the way I feel.

I see the first signs of spring with the green shoots of daffodil bulbs all around our property here. Another Spring is on its way. Won't be long until I'm riding our John Deer zero degree lawn mower butching it up mowing our almost one acre of backyard.

Life goes on folks, even as some lives end.


 


Tuesday, February 23, 2021

Transitioning To Hospice Care

 

Bill, Bamberg, Germany 1951

Today a representative from a local hospice care company will enter our front door and evaluate Bill for home hospice care.

Since Bill came home from the rehabilitation hospital, we've had home health aides (supplied by Medicare Part A) come by several times.  They take Bill's blood pressure, check his heart rate and give suggestions for physical and occupational therapy. I've decided not to use the home health aides because last week they sent us to the local emergency room because Bill's blood pressure was below 90. That visit to the emergency room solved nothing other than to cut one of his heart medications dosage in half. Friday, when another home health aid worker come in and took  Bill's blood pressure, she also said Bill should go to the emergency room. I told her "No, we're not doing that again."  I understand she's just doing her job, if he didn't, she would lose her job. 

Since Friday I've had several calls from home health aide workers who said they were coming in, all I had to turn down. We're not going that way. We're going to make Bill comfortable in his own home, our home, until the end comes. That may be tomorrow, next month, six months from now or a year from now but no more off to the emergency room.

The photo at the beginning of this blog post is of Bill when he was in the Army stationed in Bamberg, Germany in 1951. Isn't he handsome? I was just a young, snot nosed, dumb assed kid of ten years old when Bill posed for this picture. 

Bill loved being stationed in Hamburg, Germany. Over the fifty-six years we've been together he's often talked of that time, especially lately. Bill was also stationed in Tokyo Japan when he was in the Air Force. Yes, Bill was in both branches of the service for a total of nine years. He had to get out both times to help support his mother, who was a widow. If it wasn't for her request to have Bill discharged from the service to help support her, Bill would have made a career out of the Air Force. And I of course would never have met him. The whims of fate.

This is the picture I sent to the funeral director that I made Bill's final arrangements with. I asked him to use it in the newspaper notice of Bill's passing. 

Sunday, February 21, 2021

Making Bathroom Handicap Accessible



Scott putting in the new toilet rails


 Yesterday, Scott my local handyman made two of our bathrooms handicap accessible for Bill


Bill shower before the grab bars

We now have guardrails on the toilets for both Bill's bathroom in the basement near his bedroom and the second floor bathroom that he sometimes uses. Scott also installed grab bars in Bill's shower. 

Scott installing the grab bars in Bill's shower

Bill is still very unsteady on his feet and these grab bars give him confidence when he takes a shower or goes to the bathroom. He still uses the pee jug for the #1 but for #2 we've managed to avoid the portable bucket and instead use the toilet. With these handrails on either side of the toilet Bill now can go to the bathroom and get up off the toilet without my help.

Bill in his new grab bar shower

Now that we've made the decision to go into home hospice care, we're settling into a routine. The first hospice worker hasn't arrived yet, it's the weekend but we'll probably see her (or him) next week. 

I'm administering Bill his medications but I'm no longer taking his blood pressure, per advice of his doctor. We'll take one day at a time.

This morning we had two rides, both to the local supermarket. I'm making homemade tomato soup (which I LOVE). The reason I had to make two trips was I was halfway into making the soup and I realized I didn't have any tomato paste. It never fails, with all the food I have stocked up here in the house it seems I'm always missing a key ingredient. No problem, just an excuse for another trip on this sunny cold Sunday.

Last night we had a little setback. Bill gets confused sometimes when he's sleeping. Last night he pushed his emergency button bell that he has hanging around his neck. I was watching "Curb Your Enthusiasm" in the Tipton Cinema (my bedroom movie theater, where I usually watch movies on Saturday night). I go rushing downstairs only to find that Bill had to take a pee, immediately. I helped him into the bathroom and to do his business. Then I helped him back to his recliner in his bedroom where he sleeps and I asked him why he didn't take a pee on his own, which he has been doing for the past three days. Out of the blue he got angry with me, very angry. Where did that come from? He thought I didn't want to help him, which wasn't the case. I tried to reason with him but it was hopeless so I left him and went back to my bedroom. I couldn't watch "Curb Your Enthusiasm" nonsense anymore, my sense of humor dashed for the night. When I got up this morning and went down to see Bill he was his hold self. He said something about "we got into a fight and I don't want to do that." Well, actually we didn't "get into a fight" but I let it go. 

Several years ago I realized Bill was bipolar. I think that was what happened last night. And since his fall, his memory is very sketchy as to what he did the day or night before. I want to keep him here, take our rides like we did on this sunny day. I hope we don't have any more episodes like last night and I'll do everything I can to avoid them. 

Folks, being a full-time caregiver is challenging. If any of you end up in that situation during  your lifetime, be forewarned. You'll learn that basic fact.

Now to wrap up this blog and puree that homemade tomato soup.


Bill relaxing in his favorite place in our sunroom 


Thursday, February 18, 2021

Bill's Emergency Room Visit February 17, 2021



"Alicia", Bill's home health aide checking Bill's blood pressure yesterday

 Bill's medical care crises continues. 

Yesterday morning "Alicia", Bill's health aide of the day, checked his blood pressure as they always do when they come in for his home health care. She said his blood pressure was 88 over 62, too low. She advised me to go to the local Emergency Room immediately. My first response was "Oh no, another emergency room visit? What can they do?" I asked her "Do I have to?"  She said "It's up to you." She said whenever a patient's blood pressure is below 90 he should go to the local emergency room. 

What do I know? I bundled Bill up and got him ready for the ride to our local Emergency Room, a place I know well having visited there several times with my numerous kidney stone episodes. Of course I knew by driving in and not taking the ambulance we would be waiting in the Emergency Room for how long? But I couldn't justify taking an ambulance so I drove him to the Emergency Room.

Bill in the local Emergency Room yesterday, waiting for a "room" availability 

We arrived on the cold and windy day that was yesterday. On the best of days Bill is cold because of the blood thinner medication that he takes, yesterday he was freezing.

I checked in at the arrival desk and was told to take a seat to await a room, none was available at this time.

We settled in and thus began the Long Wait. Bill was getting colder and colder. I didn't want to be one of those unreasonable people in Emergency Rooms by demanding special attention but I had to do something because Bill was so cold. They gave me a blanket to put over him. I got another blanket out of out car. Bill was bundled up like a hostage. Still no room.

While waiting I called the VA Emergency Hotline that has to be called within 72 hours for veteran's emergency room coverage. Normally that call runs smoothly but, of course, yesterday that hit several kinks. After about twenty minutes on the phone I was given the authorization number for VA coverage for this emergency room visit. At least I made some good use of our long wait in the Emergency Room.

Finally, just as we were about to leave (I couldn't stay any longer because Bill was going crazy), a nurse came out and said they had a room available.

Bill "Freezing" yesterday waiting for a room availability at our local Emergency Room yesterday

They wheeled (wheelchair) Bill back into the room (actually a bay separated by curtains) and told me they would call me back when they had him ready. Bill can't communicate because of his hearing and cognitive problems, they realized they would need me back with him to calm him down and tell them what the problem was, if there was a problem.

They ran the usual series of test (EKG, blood test, urinalysis (which was a bear getting Bill to pee in the jug lying down, picture a fountain) and X-Ray. They found nothing out of the ordinary. 


Bill being checked out by the Emergency Room doctor

The ER doctor came back and explained to me that Bill's blood pressure probably went down because of the medication he's  taking for his atrial fibrillation (metoprolol tartrate 25 MG). Bill has to take that medication so he doesn't have another blackout that caused him to fall twice in a couple of days last month, resulting in bleeding in his brain. 

The ER doctor contacted Bill's VA doctor and she advised to cut his "meta" pill dosage in half, which is what I did last night.

We returned home about 4:30 PM, after spending the whole day at the Emergency Room, not having lunch and both of us very stressed out.

What did I learn from yesterday's episode? I have determined to remove Bill from home health care for physical and occupation therapy and put him on hospice home health care. We can't be running to the Emergency Room every time is blood pressure dips below 90. Yesterday just about did both of us in. If Bill loses me, he's done. I have to make this hard choice for both of us and our health. 

The home health aide yesterday was doing what she is paid to do, following her parameters. If she didn't she and the home health aide company could be sued. I understand that. That home health aide company and the Emergency Room is to keep Bill alive. I have to transition to hospice care to keep Bill comfortable. Bill is 92 years old, greatly weakened and will never be the person he was just a few months ago. Yesterday, just before the home health aide person came in, Bill and I were actually settling into a routine, albeit a greatly different one that we had before Bill's accident last month. Yesterday, with that Emergency Room visit, that was greatly upended for what reason? Following protocol for keeping him alive.  

There comes a time when one realizes that our life will never be what it was before. I have come to that realization. I am so thankful that I am one of the lucky few that is able to have my loved one here at our home where he is happy and comfortable. I am doing everything I can to make Bill's remaining days comfortable. I just couldn't bear the idea of Bill dying in an impersonal rehab facility, alone and abandoned. But at the same time I have to consider my health too. If I'm not around there is no one to take care of Bill. We're both done. At least with hospice care we can develop a routine until the End, however long that is.

Today was so much different than yesterday. Bill is even going to the bathroom by himself. I was just too tired to help him last night. I noticed this morning that he got everything in his pee jug in his downstairs bathroom. He's also using the upstairs bathroom. He still needs help getting up from the toilet for his Number Two's. I installed a special apparatus to help him with that. He hasn't tried it yet but I'm confident it will work. I'm not good at these handyman jobs but I'm managing, much to my surprise. I did ask my local hired handyman to stop by this weekend to tighten up what I installed and maybe a new grab bar in the bathroom.


New toiled contraption with handrails for Bill

The weather today was freezing rain. Thank goodness we have power, unlike those poor folks in Texas who have that God awful incompetent Republican government that has caused thousands of Texans to loose power and causes unnecessary deaths because of their lack of foresight. The Texas Republicans are more concerned about cultural issues than they are about protecting their citizens from harm. Today's Republican Party should go to hell for what they have done to this country but this is another whole subject I'm just too tired to rant about now. I have more immediate problems. I haven't even gotten my COVID shot yet because our Delaware (Democrat) governor hasn't figured out how to make it easier for Delawareans to get COVID vaccinations. Equal opportunity incompetence. 

For the first time in weeks, I was about to take an afternoon nap, albeit a short one. Still, a nap which refreshes me and gives me a jump start on the rest of the day. Usually I go to bed at night around eleven or twelve. These past two weeks I've been going to bed at 8:30 and 9:00 and sleeping through, less several pee breaks during the night, until the morning.

Bill is out in the sun room napping now. Earlier, he was up and about without his walker, walking around the house and visiting his workshop in the basement. We had a shower (I helped him) this morning which wasn't too painful for Bill. He even found his old moccasins and put them on, thus for the first time not padding around the house in those non skid socks we got from the rehab hospital. And a sure sign that Bill is returning to his old way, he even admonished me for not pulling my car far enough into the garage, that's Bill always behind me correcting me. Of course I didn't pull the car all the way into our garage because I wanted to give him enough room to walk around the front of my car but he wasn't hearing that. Bill default position is too correct me. I'm used to it after fifty-six years. You should see us driving, Bill is the typical back seat driver. How many times have I offered to pull the car over to the side of the road and let him drive? I tell him "Either I drive this car or you do, we both can't drive it at the same time."

We didn't go for out daily drive today because of the rain and ice outside. We don't need any accidents now that our life here at home is so precarious. We have no backup plan. It's just us. My turn caring for Bill the same way he did when I tore my quadricep leg muscle five years ago.

Today would have been one of my regular work days at the hotel, 3 PM to 11 PM shift.  I do miss my job. Working two days a week was the perfect balance of my life. Caring for Bill here at home is the new "balance" of my life. I am working on making it as workable as possible so we both can have a measure of peace and serenity at this time of our lives, the Final Chapter of our great love story. And that it is folks. These days I often think of what a wonderful life I've had with Bill over the past fifty-six years. Of course I block out the disagreeable times, those "bumps" in our relationship (and who doesn't have "bumps" in their relationships?) We both have had a fabulous life and now we're bringing it to a fabulous ending. Off into the sunset, me and Bill.


Bill in his hometown of Toccoa, Georgia April 23, 2013 during our last trip South. Oh how he loved those trips. It's a shame we can't do them anymore. So sad. 




Tuesday, February 16, 2021

Bill's Bedroom Baby Cam Monitor


I don't remember who came up with the idea of installing one of those baby monitors in Bill's bedroom (I think it was Pat), but I installed one on Sunday. It wasn't easy. My head hurt after spending about four hours trying to figure out how to configure the baby monitor camera with my iPhone but I got it done. I'm finding that I'm accomplishing a lot of tasks that I wouldn't even have attempted before my caregiving of Bill.

As I type this blog this morning at 7:12 AM I am monitoring Bill on my iPhone, waiting for him to get ready to get up. Today is shower day. He hates taking a shower. It's an extra effort for him. I've had to remind him it's a lot of extra effort for me because I have to undress him, all the while he's groaning and complaining, get him in the shower, wash him down, then dry him then (this is the hard part) getting him dressed again. He does feel a lot better after a shower but it is an ordeal for both of us. 

We're settling into somewhat of a routine here at home. I have all his medications lined up on the kitchen counter. He has morning medications, evening medications and bedtime medications. I have a little chart with dates and check marks to keep a records of the medications I give him. This is a full time job folks. And as of yesterday, his health aid worker informed me that I'm going to have to take his blood pressure every morning before I give him his a-fib medication. 

Our routine consists of me helping him to the bathroom three or four times a night (I get up that often myself). He can go to the bathroom himself during the day but sometimes I help him. 

First thing in the morning I put on his compression socks. He hates that. My back hates that too, it's a killer getting those socks on. Now his legs are more swollen than ever from edema. The health aid worker yesterday was concerned about that. She told Bill that he has to do more exercise with his feet while his sitting and keep his feet elevated. Of course Bill resists, as is his nature. He doesn't even want the home health aide worker coming in but I convince him that it is in our best interest. She is helpful.  I told him it was either the home health aide working visiting us or he's in a nursing home. That seems to get his attention. Bill is stubborn but with patience I can usually convince him that this is the best situation we're in now. 

After I put Bill's compression stockings on we go upstairs (yes, Bill is climbing the stairs) for breakfast. I help Bill to his recliner chair in the sunroom and to elevate his legs. Yesterday he finally figured out who to recline the chair on his own. I was doing it for him. Then I give Bill his morning medications first. Bill always has the same breakfast, oatmeal with half and half, a lot. Very watery, just the way he likes it. 

After breakfast we settle in for the rest of the day. The home health aide workers usually come in between 10 and 11 AM in the morning twice or three times a week. They only come in on the weekdays, never on the weekends. 

Yesterday when the home health aide worker came in I was making carrot ginger soup for Bill, his favorite. Mine too. The whole kitchen and sunroom caressed the aroma of that subtle, gentle pureed soup. I'm surprise the home health aide worker didn't ask what I was making. 

After the home health aide worker leaves, Bill either checks his iPad or naps in his sunroom recliner. I try to snatch a little time for myself in my home office just around the corner from the kitchen. 

Then it's lunch time. Yesterday was good with the carrot ginger soup. Then we go for our daily ride. Usually I drive up Route One to Milton and our local Food Lion, which was recently revamped. It's no Wegmans but it is a good supermarket. Good prices and I can usually get what I want.

Something interesting has happened since I began my full time job as caregiver to Bill, I've lost my sweet tooth. I just have no desire for desserts. Gone are the cakes and pies I used to make. In the process I've lost fifteen pounds. I'm down to 159 pounds now from a high of 174 pounds. What a way to lose weight huh? Well, I don't look any better. All this stress has gotten to my face, my iPhone doesn't even recognize me anymore. 

Just got back from giving Bill his biweekly shower. Oh how he moans and groans about the effort it takes to undress him, get him in the shower, lather him down, rinse him off, dry him then dress him. I reminded him that it's taking an effort on my part too (my back). But Bill did admit that he felt a "lot better" after his shower. Positive feedback, always helpful after a major effort like this. 

"Kathy", the home health aide worker just called. She'll be over between 10 and 11 this morning. Bill moans and groans about those visits too. I explained to him this is much preferable than living in a rehab facility or nursing home and having health aides check up on him. I got his attention. Bill is a little spoiled, always has been since we've been together. He just never has liked to have "company" over wherever we have lived. We have gotten into many arguments over the years because of this quirk in Bill's personality. I thought when I partnered up with someone we would have company over for dinner, travel together, etc. Was not to be. I adjusted over the  years. Perhaps that's one of the reasons I like my friendship with Pat. He likes to travel with me, have company over (entertain) and "go out" to different venues like concerts. I met Pat late in my life and began doing these things normal couples do, it's nice.

That's it for today folks, have a great day!

Monitoring Bill on my iPhone with "baby cam" - it's black and white because the room is dark




Saturday, February 13, 2021

The Tonga Hut Band, Palm Springs, California 2020

 This is the week Pat and I were scheduled to be in Palm Springs, California for Modernist Week. 

Pat and I have been making this two week winter getaway to Palm Springs for three years now. Little did we know last year at this time, when we made our airline and VRBO reservations for this year, that the worldwide COVID pandemic would upend all our plans. Even if it wasn't for the pandemic, I couldn't have made the trip anyway because I have to devote my total attention to caregiving for Bill at this time of his life. 

The video above was made at the Tonga Hut Tiki Bar in downtown Palm Springs last year on February 16th, 2020. Pat discovered that band while he was walking around North Palm Canyon Drive, the main drag in downtown Palm Springs, during one of my afternoon naps. We had a front row seat that late Thursday afternoon to this fabulous band. What a great time we had that afternoon. We enjoyed it so much we came back that night to get more. Of course it was more crowded then but we waited until we got another seat on the second floor balcony overlooking North Palm Canyon Drive in downtown Palm Springs. We also met and made some good friends with other visitors to Palm Springs who were also enjoying this band. Little did I realize at that time how much my life and the world would change in a year. 

Talking to Pat this morning on FaceTime (which I do several times a day), we pledged to return to Palm Springs someday, hopefully next year. I still haven't given up the possibility of someday permanently retiring to Palm Springs, with Pat of course. 

The first time we visited Palm Springs, on the advice of Nadege (another good California friend of ours we met through this blog), both Pat and I knew we have found something special.  Now I know why so many celebrities and just regular folks like us retire to Palm Springs. And of course Palm Springs has a large, older (mostly men, not women like her in the Rehoboth Beach area where I live now) men. 

With Bill's medical condition now that he needs a caregiver, the thought has crossed my mind that perhaps someday I will need a caregiver. I would rather have a caregiver living in Palm Springs than here in a cold February Delaware. I love my home here in Delaware and all the "things" I've accumulated over the past seventy-nine years of my life (especially my artwork), but when my time comes, I want to end my days in a comfortable environment with minimal help from a caregiver. 

In the meantime, I look forward to next year. 


Pat and me in sunny Palm Springs last year during more carefree times


Thursday, February 11, 2021

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



Monday, February 08, 2021

Bill Shaves For The First Time In Three Weeks


Bill shaved for the first time in three weeks this morning. 

I also cut his hair for the first time in my life this morning. 

Today we went out for a ride. Before Bill's emergency I took him out for his ride almost every day. Bill is so happy we have returned to his daily ride. Today was a nice sunny day too.

I think I'm getting a routine worked out during this new phase of our lives. A friend, who took care of his mother during her declining years, recommended that I make time for myself every day to cope with being a full-time (24/y) caregiver. That's what I'm doing now that Bill is in his recliner in his bedroom. However, I do have to stop in his bedroom before I go to bed about 11 PM to help him in the bathroom. This is one function that I wish I didn't have (I have enough problems with my bathroom visits) but I'm managing. Seems like my whole day is based on Bill's bathroom needs. 

Bill's walked more, with the help of his walker today. That's better than sitting all day, he has to get the blood flowing in his legs. He was complaining about his legs hurting yesterday. His legs didn't hurt today. I told him he has to walk more. 

Another problem is that he's always cold. I just came back from his basement bedroom, which is always toasty. His bedroom is next to our heater, my bedroom is on the other side of the house. He said he was "cold." I checked the thermostat of the space heater in his bedroom, it's set at 74 degrees which was warm enough for him in the past. Now he's cold. I moved it up to 79 degrees. It's like a sauna in his bedroom now. 

I have to go down to his bedroom at about eleven for another pee call. I'm tired now and would like to go to bed but I don't have that option because if I go to sleep, I know I won't wake up until 3 PM at the earliest. And of course no afternoon nap this afternoon. My afternoon naps are a thing of the past. They were always how I rejuvenated myself. 

This morning was an ordeal. I woke up at 2 AM and of course he had to go to the bathroom. I woke up again at 4:30 AM for another bathroom visit for him. I took this opportunity to give him a shower, which he hated but he needed. Then he shaved after the shower (the video above) and I cut his hair. 

Tomorrow is going to be a busy day. A TELEHEALTH video call with his VA doctor. Also coming over is his Medicare health aid physical therapist (Serena). Also the case manager (Linda) is coming over. I'm sure there is going to be an overlap. I'll have to manage the best I can. 

Today was very busy too. Had to call the ambulance company to tell them to send the bill to the VA for Bill's transportation from Philadelphia to Dover. I also got the quote from the local funeral home on Bill's final arrangements. Talk about sticker shock and I'm not even having a viewing. I called my neighbor who buried his wife last year through the same funeral home and he did have a viewing. I dared to ask how much that cost.......$20,000! Wow. The funeral home did do a nice job though. That's why I called them. They do take care of everything. If Bill passes before me (and one never knows) I won't be in any shape to provide all his personal information. My brother suggested that I take care of this now and I'm glad I did. I checked around and the cost estimate was the average. I've come around and now have accepted the cost. I want Bill to get a good sendoff. He will get a military funeral with a 21 gun salute. But in the meantime I have to go downstairs now and make sure he's warm.

Bill with a cover over his head trying to stay warm







Sunday, February 07, 2021

Bill's Home!

Bill sleeping peacefully in his bedroom last night

 Bill is home!

The last two days have been a whirlwind. 

Seems a lot longer than two days.

Bill was discharged from the rehab hospital in Dover where he has been staying for the past two weeks. 

I had a lot of papers to sign to get him out of there. One of the concerns I raised was continuing his medications until Bill's VA automatic prescriptions were in place. I was assured by Bill's doctor the prescriptions would be called in to Rite Aid, which is the procedure the VA uses, until the vet's prescriptions are in the VA system. 

We got Bill in the car without too much trouble and then we headed south on U.S. Coastal Highway (U.S. 1) to Georgetown to pick up Bill's prescriptions so we could bridge his medications until the VA kicked in. 

We got down to Georgetown, I pulled up to the drive-in window of Rite-Aid, give Bill's name and date of birth and . . . . . . . . . . you guessed it. They had NOTHING.  I was afraid of that. And, to add even more confusion, just as the woman at the drive-in window was telling me that they didn't have Bill's prescriptions, I got a phone call from the home health aid worker, she was AT OUT HOUSE. I wasn't expecting her on Friday. She said she was coming Saturday. What to do? I was confused. 

I made the decision to go home and meet up with her. She was waiting in her car when we drove into our driveway. 

I invited her in our house. Gave her all the pertinent information and filled out a lot of paperwork, again. Friday was a day for paperwork. She said the home health aid worker would be coming in next Tuesday and Thursday (I think). This is a physical occupational therapist. 

After signing all her documents, she left and it was just me and Bill now. How to navigate with a 180 pound man who has a great deal of trouble getting to a standing position? And the bathroom?  I'm a bit squeamish but like my friend Glenn, who recently lost his longtime partner/husband, I quickly got over the squeamish part. You do what you have to do.

The first night home was hell. I didn't want Bill going downstairs because of his weakness. I put him in the side bedroom. But there was a problem, Bill hasn't slept in a bed for years. He sleeps in a recliner type lounge chair. My brother, his wife and their daughter that lives them sleep in giant lounger chairs. I don't know how they do it, I couldn't sleep that way.


Bill in the bed that didn't work

Bill's recliner chair is in his bedroom down those thirteen stairs I didn't want him to take.  I am afraid he will fall and really cause some serious damage like a broken limb or even worse, a broken hip.

I undressed him and managed somehow to swing his legs on the bed, which was his old bed he uses when he lived in Pennsylvania, when we could all walk around and do normal things like it seems everybody else does now. Oh for those days without the physical infirmities we have now.

Once I got him in the bed then he said he had to go to the bathroom. Up and out of the bed I had to swing his dead weight of 180 lbs., which was very painful for him not to mention my back. The thought ran through my head, "Did I take on too much?  Can I manage? What happens to Bill if I can't manage?"

I got him in the bathroom and put him on one of those commode fixtures that the rehab unit sent me by mail. Which I had to put together, which I hate putting things together. Thank God for You Tube.

Twice he had to go to the bathroom. Twice. I had undress him for bed. Normally he sleeps in his clothes. 

During the night I went into his room to check on him and he was lying there, starring at the ceiling, clearly uncomfortable. Oh my, this isn't going to work. 

We managed somehow to get through the night but neither one of us got much sleep. I had to figure out a new routine for Bill. We decided to try those Thirteen Steps to his basement bedroom. We did that later in the day but first I had to get gas so I took Bill for one of his rides that he so loves. Bill has some difficulty getting in and out of our car but he manages. In fact when we came back he took his walker and went for an exercise walk himself down around the cul de sac in our development. Yesterday was a mild and sunny day and not too windy (48 degrees). 


Bill with walker outside

By the time he got back he was pooped. Time to try my walk in shower with a bench. I knew someday that built in bench would come in handy.

That was another ordeal getting him undressed and keep him warm while I wetting him down with the extension wand on my show head. So tiring for Bill, me too!

After we got in Bill had to rest. I let him rest for about an hour then suggested the try The Steps. Bill was all for that. We proceeded to the steps and very carefully, Bill grasping onto the banister and me holding onto him to steady him, we descended down the steps to his man cave bedroom which he has as a shrine to me (not my idea). 

Oh he was so happy to be in his bedroom, finally!

I told him I repainted the wall and thoroughly vacuumed cleaned all the corners. He had a almost brand new bedroom. 

Bill slept in his bedroom last night, fully clothed which is the way he's been sleeping for the past ten years or so. 

I woke up about 2:30 AM for my nightly bathroom visit and I went down to see how Bill was doing. He had the light on and wanted to go to his bathroom. In his bathroom we don't have the contraption over the toilet, instead we used the pee plastic bottle that I absconded with from one of my hospital stays (I forgot to bring Bill's plastic pee bottle down from the rehab hospital, too much going on that day). 

We managed with the bottle. I actually have to aim his "thing" in the bottle or else he goes on the floor thinking he went into the bottle. Sorry to be so gross but just giving you an idea of the actualities of home health care. You do everything and I mean EVERYTHING. My back was killing me. 

I managed to get back to sleep until sometime after 6 AM this morning. I went down to check Bill again and he had managed to go to his bathroom. He said he used the bottle but he only got part of his pee in the bottle. Some pee ended up on the floor (thank God I have a tile floor in his bathroom, and the rest he got on his yoga pants, which I promptly took off and put in the washing machine. I've used that washing machine this week more than I have in the past two weeks combined. But I was so glad he managed to go to the bathroom by himself. Now we have a routine. I just don't want him to go on the wall to wall carpeting that he has in his bedroom. If he can managed that short distance from his bedroom to his bathroom, that's super! I was so relieved. 

However, I still had one unresolved problem. How could Bill quickly get in touch with me if he had an emergency? I would frequently check in on him but how would he communicate with me he needed my help other than hollering. My bedroom is at the far end of our house and he's in the basement. Pat came up with a solution, a baby camera. Viola! I ordered one from Amazon. It will be here Tuesday. Thank God, I can monitor him on my iPhone. Another thing I have to setup but something that is totally necessary to give me peace of mind. With a baby camera all he has to do is say "Hey Ronnie!" and I'll hear him on my iPhone just like my Ring doorbell.

It starting snowing outside while I was writing this very long blog update. Bill's sitting in our sunroom now, cozied up with multiple blanket and his new ski cap, watching the snow falling gently. We have no where to go today. Just me and Bill, caring for one another. 

Bill snoozing in sun room as snow falls gently outside




Thursday, February 04, 2021

Bill Practicing Getting In And Out Of Car


Today I had a "family training session" at the rehab hospital where Bill has been for the past two weeks in Dover, Delaware.

Tomorrow I drive up to Dover again, and this time I can tell Bill "We're going home now."  A question he has asked me almost every day since I found him on the floor of his bedroom, unconscious January 14th. 

What a journey Bill has had since that time. First the EMT's of our local hospital picked him up off the floor of his bedroom, strapped him to their gurney, slid that gurney in the back of their armored emergency vehicle with the flashing red lights early in the morning dawn of a cold January morning.

Later that day he was airlifted to a hospital in Philadelphia, near death from bleeding on the brain, blood clots in his lungs and a-fib.

After several days in the ICU of the Philadelphia hospital he was transferred out to a post acute rehabilitation hospital in Dover, Delaware. 

Tomorrow he will be discharged, two weeks to the day since he was admitted to the rehab hospital, to go home. 

Thus begins another chapter in his journey to recovery from his blackout caused by his a-fib.

He's on medication for his a-fib, and also medication for the blood clots in his lungs (hopefully they will dissipate, and the swelling in his lower legs (edema)  are also being taken care of. 

I will be with him all the time when he comes home. The only time he won't be under my watch is when I'm sleeping. And I have to sleep. But I am so thankful he is home. I thought I had lost him on last month. 

I am so thankful to have this time with him now.

Tuesday, February 02, 2021

Bill's Bedroom Ready For His Return Home This Friday

Bill called me from his rehab this afternoon. He sounded almost like the old Bill I know and love.

He also called yesterday and sounded like his old self. 

He said his physical therapy is coming along, he walked two hundred feet today. That is great news! However, he is still at risk of falling down. But it is encouraging that he can walk and even do steps. Maybe he can even go down the thirteen steps to his bedroom.

Over the weekend I thoroughly cleaned out his room, vacuuming the hell out of it. I dusted every thing off. And, a biggie since I hate to paint, I painted his corner. The wall was so dirty with his fingerprints from putting up all those pictures of me and other pictures that give him comfort. One picture is of Bill and my Mother. He loved my Mother and the feeling was mutual, my Mother was best friends with Bill. They were only four years apart in age. 

Also Bill's favorite eagle picture is now up behind his bed and one of his favorite oil paintings, of Baltimore Orioles birds. 

This Friday Bill is scheduled to be discharged from the rehab hospital that has been his home the past two weeks. He is so anxious to come home as I am to have him here, where I can take care of him.

This afternoon I also received a call from the home health care agency. They're setting things up also to come and help me when Bill comes home. They said they were "stretched" because of COVID and no one wanting to stay in facilities where they could catch the virus. I am so fortunate to have Bill come home again. I thought I had lost him back on January 14th, when I found him unconscious on the floor of this same bedroom. He had hit his head on the wall coat hanger seat piece of furniture that I bought from Yield House many years ago. I've moved that out of his bedroom to give him more space. No loose throw rugs either. But the wall to wall carpet stays. We'll managed with his walker and me helping him every time he has to move. 

Two more days and Bill comes home.

Caregiver Update

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