Ron Is Now Vaccinated!

Waiting for my first COVID vaccination shot at the VA Outpatient Clinic

Hey folks! I got my first vaccination shot on Wednesday at the VA Outpatient Clinic in Georgetown, DE. 

I got the Pfizer vaccine.  My second shot is scheduled for March 24th. 

I am so relieved. I haven't mentioned it much but I was concerned that I would carry the COVID virus back to Bill. I tried to arrange a shot for Bill but they declined, saying in effect he was too old.

In a few minutes Bill's hospice nurse is scheduled to arrive for her weekly visit. Now that Bill isn't on home health care, the we're not receiving those two and three times a week visits from the home health aides, sometimes two at a time. Very disruptive although they were just doing their job. Those visits weren't helping us though, especially the last two where both times the aide advised me to take Bill to the local emergency room right away, which solved nothing as far as Bill's condition.

We're continuing to settle into a routine here. Every three days I help Bill take a shower. Daily I dress his right leg which is weeping from his edema condition. I'm actually getting pretty good at it. Nurse Ron here.

I have to say I do miss my twice a week stint at the hotel where I work as a front desk agent. I miss the interaction with the guests.  Working twice a week (Mondays and Thursdays from 3 PM to 11 PM) provided a nice break from my at home routine. Now I spend all my time at home. I've floated the idea of going back to work but Bill won't hear of it. He says "I don't have that long to go, I want you here."

I do have the option of temporarily placing him at the home like setting at the hospice center for a week every ninety days so I can get away and be on my own. He isn't going for that idea either. I know that probably sounds selfish on Bill's part but I understand his need. And I am glad that I have the opportunity to take care of him at this time.

Yesterday I took Bill to a local audiology provider for his new hearing aids. Bill has an ancient set of hearing aids now that were recently broken at the rehab hospital where he spent two weeks. It's going to take six to eight weeks to get Bill's new hearing aids but hopefully they will make his life a bit easier, and mine (I won't have to shout at much).

Bill waiting for his hearing aid appointment

The hospice nurse (Caitlin) hasn't arrived yet but I'm finished this posting. After she leaves we're off to one of my favorite places, the RESTORE (Habitat for Humanity) Thrift Store. I almost always find a "find" there. Plus, we also get Bill out for his daily ride. 

Have a great day everyone!

  

Finally,Geting My COVID Vaccination Shot

Me waiting for my eye doctor this morning - yes, I've aged a lot in the past  two months

 Finally, I'm scheduled for a COVID vaccination shot. 

It's been so frustrating trying to get a COVID vaccination. I live in Delaware, president Biden's home state. One would think I would have no problem especially since I'm in the second group (old, cancer survivor). But, I've signed up to three websites (Walgreens, Beebe Hospital, and a national website), and nada. I get the same response, "No availability." Then today I get a notice from the VA that they now have COVID vaccinations for veterans.  They sent me a link.  I click on the link and get five pages of verbiage. Where do I make the appointment? Coincidentally, while I was looking I received a call from the VA following up on Bill's macular degeneration eye condition. I told them that Bill was now in hospice care and we don't need a support group to help Bill with his loss of vision. However, I did tell her that she could help me to navigate the VA website to make a vaccination appointment. She suggested I contact my local outpatient clinic, which I did and viola! I have an appointment at 2:30 PM tomorrow afternoon, which is right in the middle of my daily nap time (which I've been able to resume late last week now that Bill and I have settled into a routine). Of course I will go tomorrow to get my vaccination. I requested a vaccination for Bill but his doctor turned that down which I understand. Bill is in hospice care and at his age (92), and condition, getting vaccination wouldn't be viable. 

As I mentioned earlier, Bill and I are settling into a routine, which is good. Our life is going back to some normality. I still have to help Bill undress, take a shower and dress.  I also have to daily change his dressing on his leg which has edema and is weeping. I'm managing. This is the new normal now. Bill is managing going to the bathroom by himself which is a big help. He's also getting his sense of humor back, which is another good sign. I miss my job at the hotel though. Working two days a week at the hotel provided the proper balance in my life, that worked for me. I hope I can go back to that routine sometimes in my life. But for now I have different responsibilities.

Oh, two more good things today, I had my eye examination this morning. I couldn't take Bill with me because they're only allowing patients in the eye institute because of COVID restrictions. For the first time since Bill came home I had to leave him alone for about two hours. When I came back home he thought something had happened to me (a car accident) and was panicking. He completely forgot that I told him I would be gone for about two hours (which I was).  I calmed him down and life is back to normal now. I don't need new glasses but my cataracts are still forming. My doctor told me I would know when I needed cataract surgery. I couldn't get cataract surgery at this time anyway.

Another good thing today, my Time Machine backup is working on my iMac. I changed my external hard drive. Don't ask me why one isn't working and the other is. Some of this computer stuff still baffles me. All I know is that this new backup is taking about fourteen hours for the initial backup. I have a lot of photos and videos. 

One more good thing, my first daffodil bloomed today. Spring is coming!

New Year's Day Philly 1976

Now that I'm basically housebound, full-time caregiver for Bill, I'm having time to review some old videos for digitization.

This little blip of a video is of an old film that was converted to VHS and then I recorded with my iPhone. Needless to say, some of the video quality is lost but you can get a feel for the time and place.

This video was taken on New Year's Day 1976 (give or take a year, it was the 70's), when Bill and I live in a quaint townhouse in center city Philadelphia. It was always my dream to live in center city Philly, where I could walk to work and the bars. 

When we lived on Naudain Street (between Lombard and South Street, 2400 block), we had two male Pomeranian dogs, Hamburger (the orange sable) and Sparky (the cream colored Pom). I feel bad now thinking about how we left them alone all day when both of us went to work but they were always delighted to see us when we were home. We could take them out on the street and they wouldn't run away. They always stayed with us. 

Every year I used to look forward with great anticipation to New Year's and especially New Year's Day.  I would dress up in my butchest outfit, leather or western and head for Broad Street where the Mummers would be marching all day. Oh those were the times. 

Back then it was quite scandalous to see female impersonators in the parade, which of course the TV coverage never showed. 

My friend Don McK. who still lives in center city Philly, says the Mummers parades aren't what they used to be. Back then in then 70's it was a joyous time. Inhibitions were tossed aside for that one celebratory day of the year. And the best part (for this young gay guy) was the "interactions" when I would slip into one of the gay bars along the parade route to "warm up."  Lots of loose hands folks. Got to "meet" a lot of guys I wouldn't otherwise have the opportunity to meet during the rest of the year when inhibitions and fear of rejection were rampant.

I have three more tapes to review before I send them off to Washington State to be digitized on a flash drive that I can upload to YouTube for history after I'm long gone. I've already digitized about one hundred tapes that I've uploaded. Only about half of them are public. I have to review the rest before I make them public. I hope I live lone enough to do that.

Back here in the present time, today one have been one of my work days at the hotel. I sorely miss going to work but I have to be here for Bill. I am glad Bill is home so I can make his remaining days comfortable and pleasant. Now that the home health aides aren't calling every day and coming in with their blood pressure measuring devices, telling us to go immediately to the Emergency Room, Bill and I are settling into a routine. He's getting around much better but still very weak. He can go to the bathroom by himself with is a huge relief for me. I have enough trouble managing my own bathroom needs, I don't need to manage someone else's. For that I am very thankful because I know all care givers don't have that option. I still have to help him shower, dress and undress, administer his medications, change his dressings on his right leg where he has weeping edema. I can manage that.  We go out for a ride at least once a day. Both of us need to get out of the house. Lately it's been so cold and rainy but thank goodness no snow. 

He got his repaired hearing aid in the mail last Friday. That takes a big load off of both of us. Now he can hear. Tomorrow I have my annual eye examination appointment. He wants to go with me but I see where they are only allowing patients in the building. Bill says he can wait in the car but I don't think that's going to work because I have to get my eyes dilated and that takes time. Another hurdle to jump. I'll have to see if I can talk him into staying home alone, the first time since he came home from the rehab facility where he was for two weeks recovering from his fall.

Thinking back to those halcyon days when were were carefree and young living in center city Philly. Oh how quickly that time went by. But I have to say, we had our time and I am so appreciative that we did. We're coming to the end of our lives now, someone else is having their time. And the cycle continues. 

Bill at our townhouse (our blue car) on Naudain Street, Center City, Philadelphia 1972

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.

 

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. 

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 

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.