Saturday, January 30, 2021
Friday, January 29, 2021
This morning I took the hour drive to visit Bill again at the rehab facility where he's been for a week now.
Yesterday I got the news that Bill will be discharged next Friday. When Bill called me last night (I was at work), he sounded normal for the first time in a long time. I informed him that he is going to be discharged next Friday (February 5th). He was very happy to hear that.
I was looking forward to visiting him this morning to share his upbeat mood. However I was disappointed. He was groggy. He hardly knew I was there. I asked if he was given medication. I was told he wasn't but when he doctor came around later while I was sitting with Bill as he slept and mumbled, he did say Bill was agitated yesterday and they gave him (I think) some kind of sedative. I don't know exactly what they gave him but he was very groggy (the only word I can think of, "drunk" is to hard of a word).
|Bill resting after his physical therapy|
I'm visiting again tomorrow for a short time (can't stay long because of COVID protocols). I hope Bill is more lucid. I was quite upset this morning because I couldn't talk to him. I'm not even sure he knew I was there. Poor Bill, he didn't want to go this way. How many times has he told me how his Mother died. She was having an afternoon coffee with a friend and got a severe headache. She told her friend she was going to lay down for a while but she ended up in the hospital and died that night, only a few hours before Bill drove down from New Jersey to Georgia to see her. His mother was only 52 years old. He's often said she "was lucky" because she didn't have to suffer the infirmities of old age. Of course I always had to remind him of all the years we would have missed being together if he died at 52. He has 40 years on his mother. His father died at 21 years old in a drunk driving accident. Bill has 71 years on him. But eventually "our turn" comes.
Both Bill and I have been so lucky to have lived together so long. What a life we have had, so fortunate.
Wednesday, January 27, 2021
|Me and Bill today at his rehab facility -Bill in his favorite sweater and blanket|
This morning I took two pairs of pajama bottom pants with pull strings for Bill to wear during his stay at his rehab facility in Dover. His regular jeans are too hard for him to put on because he is so weak.
I was very fortunate again in that they let me go up and see Bill. When I walked into his room his doctor was talking to him. It was a good thing I went up in person today because his doctor had a chance to talk to me as well as his physical therapist and occupational therapist. Always better to ask and answer questions in person to those who are helping Bill get better and return home.
Today the doctors have their weekly evaluation of the patients and decide which ones who will be discharged. I don't know if Bill when be discharged but they did ask me to come back Friday at 8:00 for training for caring for Bill when he returns home.
During my stay for the first time I saw Bill walk, albeit with the help of his physical therapist who steadied him with a wide white strap around his middle, also holding up his XXL (too big for him) scrubs. The pajama bottoms (XL and in his favorite blue color) will fit him better. What a relief to see Bill actually walk. He was tired though because he had just finished about an hour and a half of physical rehab, like walking up steps. I know what physical therapy is like, I did it for three months when I recovered from my torn quadricep leg muscle.
I showed Bill's occupational therapist a video tape I had taken of the entry (from our garage) into our home to our sunroom, where Bill will be sitting most the day. Bill will also probably be sleeping there because he prefers to sleep in his chair. I don't think he can manage the thirteen stairs down to his bedroom so he'll have to sleep in the sunroom. I ordered one of those elderly cushy chair that elevate a person out of the chair. The chair is called a "Elderly-Heavy Duty Power Lift Recliner Chair with Antiskid Fabric Sofa Overstuffed Design". First thing she said "You'll have to take up those throw rugs and the runner rug. A wheel chair can't handle that." Our house is going to look strange/different but I will take up those rugs. This house is going to be Bill friendly.
|Bill's new chair|
I also had to measure the width of the door from the garage into our house to determine what size wheel chair Bill will return home in. He may have to come in through our front door, which we never use. We may have to use it now. Not a problem.
Life around here will be different when Bill comes home. Adjustments need to be made. I am glad to do that. I am just thankful that I have the opportunity to be with Bill and to care for him at this time of his life.
Bill will be discharged with hospice care. That means we'll have help, which I know I'll need. Bill doesn't like anyone else in the house but I'm sure he will accept now because he knows we'll need that help.
This is the next stage folks. I hope Bill is home by this weekend but if he isn't, next weekend for sure.
My wish is to be with Bill, caring for him during this time, the end of his life. I'm reluctant to write those words but that's what this is, the end of his life. Last week I was so upset and beside myself because I thought I lost Bill and I hadn't had a chance to be with him at the end and tell him I love him. Now I can do that every day. I can make everyday pleasant for him where he wants to be most, here at home with me. This is my privilege.
|Bill standing up with help today|
Monday, January 25, 2021
|Bill on his iPad in his favorite Archie Bunker chair in our sunroom|
Today was the first full day of rehab for Bill.
He arrived at the rehab facility last Friday night. I visited him Saturday, bringing his clothes to him. It seems so long ago now though only a few days ago.
There is no physical rehab on the weekends at the facility, giving Bill time to settle in.
Bill called me this morning from his room. This is the best he sounded since he fell and struck his head Thursday, January 17th. His voice is still stressed and he occasionally get confused but he knows who I am and wants to go home. I impressed upon him that he can come home as soon as he improves his mobility.
I received calls from the coordinator at the rehab facility telling me of their plan. Bill will rehab then, if he improves they will send him home to me, his caregiver. They asked me if I was willing to be his full-time caregiver, which I readily agreed to. The good news is that his Medicare Part A covers several visits a week for a limited amount of time from a health care provider to help me. That so greatly relieved me. I remember when I tore my left quadricep muscle and was laid up for twelve weeks. A home health care provider came in three times a week to change my bandages and help me which was a great help to me. Bill's health care aid would provide physical therapy for Bill here at our home. How kind and reasonable that is, health care at home instead of a sterile, lonely facility. Home is always best. Even though the facility where Bill is now is very good, and the people very kind and good, it's still not home.
Later in the day I received a call from the VA. They asked me what Bill's status was now. She informed me that, if needed, after the health care aide time covered by Medicare Part A runs out, the VA will provide a health care aide. This takes a great load off of my mind that I was concerned about. She also told me that Bill could be in hospice care at home. She said hospice doesn't always mean a person is soon to die, he could be in hospice palliative care.
To sum up, Bill is doing physical therapy (and speech) this week at the rehab facility. Maybe at the end of this week or next week Bill can then come home. That is my hope, to get Bill here at home where he can be taken care of in his surroundings where he is the happiest. He can be on his iPad, in his favorite chair, looking out our sunroom windows, see the early robins coming in for spring. Yes, I saw a robin today.
Sunday, January 24, 2021
|Bill's favorite knee warming throw (the one I took up to him today)|
This morning I received a call from Bill asking me where I was. I told him I was on my way to visit him.
I had packed his favorite Archie Bunker sweater (a raggedy sweater that never makes an appearance outside our home),
|Bill's favorite sweater (a raggedy Archie Bunker sweater) - he LOVES that sweater, he has it now. I hope they let him wear it|
Bill's soft warm throw that he uses when he sits in the sun room, pureed butternut squash soup, shredded cabbage, carrots and potato mix that I make for him and he so loves, and Hershey's Kandy Kisses (that he loves to melt in his mouth), and also more replacement batteries for his hearing aid.
This is Sunday so the traffic was light up Route One but of course wouldn't you know it I missed the exit and ended up taking the long way in through downtown Dover. Yesterday I took the Expressway that took me right into the rehab facility where Bill is staying.
On this cold (28 degrees) and sunny Sunday I arrived at the other end of the rehab unit. I backed my car in the parking slot, expecting to spend another two plus hours with Bill. I gathered my tote bag full of goodies I brought up for Bill and entered the lobby. I told the receptionist I was her to visit Bill. She said "Are you authorized?" I told her I was there yesterday and they sent me right up. She said "You have to be authorized or else I get into trouble." I understood her position but I had that sinking feeling that I wouldn't get to see Bill. I was sick to my stomach. I asked her to check with her superior. She asked me to have a seat in the lobby and she would check. Fifteen minutes went by and nothing. I went up to her again and ask if she had heard. She said she would send her superior an e-mail. An e-mail? I asked if she could call Bill's room so I could talk to him. Maybe I could talk to his nurse. She gave me his direct number, Bill has a phone right next to his bed. He answered but he was struggling with something. He said he was trying to "put on his pants." I had brought his clothes up to him yesterday. Maybe they were trying to dress him. He was really struggling on the phone and was in the middle of this thing they were trying to get him to do.
I don't think Bill can move that much. Even though he was sitting in his chair yesterday but I didn't see him get into that chair. When his nurse asked him if he wanted to try and get into the wheelchair he didn't want to do it. I know physical rehab is hard, I went though it myself three years ago when I tore my quadricep leg muscle.
I asked Bill if he could put his nurse on the phone. He didn't understand what I was saying. He kept saying "I don't understand you." I could tell by the tone of his voice he was very frustrated. And he's not talking regular. He struggles to talk.
I hung up my iPhone because I couldn't make him understand me. The receptionist came over and told me that she heard from her superior and couldn't get authorization for me to visit Bill. She yesterday was a "one-off". I have to admit I was very surprised that they let me visit him yesterday because I didn't expect to see him. Even though I was greatly disappointed (even more than greatly, I was devastated) I tried to compose myself and through sobs and choking up I told her that I appreciated them letting me see Bill yesterday and I understand why they couldn't today and since because of the COVID restriction. They have to considered the other patients they have in that facility. Another person came down and expressed her concern for me and told me where the coffee/refreshment room was if I wanted to spend time there. I was pretty broken up, I have to admit. I hate myself when I'm like this in public but my heart is breaking for Bill.
All he wants is to see me and come home with me. Now he can't see me or come home with me.
I haven't heard from Bill the rest of today.
I am so thankful I was afforded the opportunity to see Bill yesterday. One thing that was tearing me up since the EMT guys carried him out of here Thursday a week ago that I couldn't tell Bill how much I love him and miss him. That's all he ever wanted from me, my love (which he always has had) and to be with me. Yesterday I got that opportunity due to the kindness of those wonderful people at the rehab facility where Bill is staying now.
I hope Bill improves but I have to tell you that I wish he was moving more. I am worried. But one thing that I am so thankful for is that I had a chance to see Bill and could tell him that I love him.
If Bill should pass away, he will be at peace. We always agreed it would be best if he went first. I just could not imagine dying knowing that I would leave Bill alone. It's better for me to be left alone. I can manage. Bill couldn't. But I have to tell you folks, this hurts. It hurts way more than I had ever imagined.
The only positive thing now is that I'm not as desperate now as I was this time last week. If it wasn't for my friends (Glenn, Larry, Pat, Don and Bob) who let me spill my guts out to them, I was entering unknown territory. I felt like I was in a tunnel underground, crawling to get out and the further I crawled the narrower the tunnel became. I couldn't sleep. I was lost. I'm better now. I'm keeping busy. I talked to Glenn, Larry, Pat and Bob today. Bob is my neighbor who lost his wife, son and brother this year and lives alone. Glenn lost his partner/husband of 34 years on Jan 5th and just be coincidence happened to send me a letter informing me of that fact the night Bill was airlifted to the hospital in Philadelphia. I called Glenn on FaceTime the next day. Larry I talk to every day, he's been my friend since we became friends in third grade in 1953. Larry has ALS, I talk to him almost every morning on FaceTime at 8:30 AM. Don is my longtime friend from Philadelphia. His co-op guest suite is where Pat and I stay when we visit Philadelphia twice a year. Don is a dear, dear friend. He is saving my life again. And then there is Pat, trapped in Canada because the border is close between the US and Canada because of COVID. But Pat calls me several times a day keeping me up to date on his condo move, getting my mind off of feeling sorry for myself.
I don't know if Bill will ever come home. I hope he comes home. I hope his physical rehabilitation is successful. But I have my doubts, which I wish I didn't have but I haven't seen him move on his own except his arms. I wish he had more movement. Perhaps he will with this week of physical therapy. I hope so.
I am tired now. The last four nights I've slept hard but I do wake up early and can't get back to sleep.
I always knew this time of my life was coming. I always pushed it into the background. Put it off.
I'm trying to avoid cliches but I can't avoid this one. I'm taking one day at a time. I'm keeping busy (cleaned Bill's bathroom late this afternoon). And I await that phone call from the rehab where Bill is being well taken care of. I hope they put his favorite sweater on with those pants they were trying to get on him this morning.
|Bill just a few weeks ago sitting in our kitchen stool, being with me while I make more tomato, cucumber, onion salad for him. He loved being with me while I made his favorite foods. God I miss him.|
Saturday, January 23, 2021
Wednesday, January 20, 2021
|PAM Rehabilitation Hospital of Dover|
Bill was moved out of the ICU unit this morning to the stroke unit at Thomas Jefferson University Hospital in Philadelphia. I inquired if he had a stroke and I was told, no, the stroke unit is a step down unit prior to releasing him from the hospital.
He's scheduled to be moved tomorrow to PAM Rehabilitation Hospital in Dover for physical therapy. I inquired as to how long he would be there and, even though all case are different, I was told "one to two weeks."
|34 private rooms like this|
I cannot visit Bill at the rehabilitation hospital because of COVID but he is closer, only about forty miles up Route One from our home here in southern Delaware. God bless that case worker who placed Bill at this rehabilitation hospital. There were five choices, of which I couldn't choose but some of them were in Maryland and New Jersey.
|Rehab center (I've been in these, twice!)|
I wasn't able to talk to Bill today yet but I hope I can before the day is over.
Today is a new beginning in more ways than one, Joseph R. Biden was just sworn in at the 46th president of the United States. Bill has survived and is on his journey to regain his strength so he can come home here and we can be together again.
Tuesday, January 19, 2021
Bill is still in the ICU unit of Thomas Jefferson University Hospital in Philadelphia.
I was able to talk to him via FaceTime yesterday. This was the best conversation we had yet since he was airlifted to Thomas Jefferson last Thursday evening. Bill still can't quite see me on the iPhone FaceTime but he did catch glimpses. Mostly he put the nurses's iPhone to his ear so he could hear me because he is hard of hearing.
When I first called yesterday I couldn't get through to him because he had a choking incident while he was eating an English Muffin for breakfast. Oh my God, he can't eat anything like that which I immediately told the nurse. Bill has had trouble swallowing for years because of his restricted esophagus. I told them that he loves oatmeal which they were glad to know. They also have now put him on a pureed food program.
Bill wants to come home. He thinks he's ready to come home now but he isn't because he can't even get up by himself. He would need enough rehab so he can be somewhat mobile. Then he can come home.
Bill does look better now, but still pretty beat up from where he fell in his bedroom last Thursday morning. I feel so bad for him. I don't know how long he was on the floor of his bedroom with his head twisted next to that Yield House hallway stand where he hangs his bathroom. I'm moving that piece of furniture today out of his bedroom, that's the picture at the top of this posting.
I don't know when Bill will be able to come home, his doctors haven't talked to me since last Friday. I expect to talk to them today because the weekend and holiday is over now. But when Bill comes home I'm going to try and take care of him here, his home where he so wants to be now at this time of his life.
Now once he comes home, which I suspect he will, I have to work out a plan to make sure he doesn't fall again. I'm not quite sure how I'm going to do that but I'll figure something out.
I woke up this morning for my bathroom visit at about 6:20 AM. I tried to get back to sleep but couldn't. However, I am so thankful I was able to get a good sleep last night after I went to bed around 12:30 AM. I'm a heavy sleeper which I did last night. I was also able to get a good sleep the previous night. the first two nights after Bill was in the hospital, I didn't get a good sleep. I am exhausted.
I have little appetite but I eat something. I've lost fourteen pounds already, which is what happens to me when I'm stressed out. The last time I was so stressed, was when we were having a problem selling our Pennsylvania house. I lost so much weight that I looked ill. I'm hoping I can stabilize soon.
Yesterday, when I woke up in this empty house without Bill's loving presence, was the first time since Bill went to the hospital that I actually felt I could survive him not being here ever. That thought is still almost unbearable painful but maybe, just maybe I can survive. And the only thing that is getting me through that is knowing that Bill would finally be at peace. While he's still alive he's worried about me, misses me and misses our home. When he's gone, he doesn't know anything. We've often talked about that in anticipation of our deaths. Just like going under anesthesia Bill. He understood that. But while he's still alive he's hurting, not just physically but emotionally.
My friend Pat has been a lifesaver with his support at this time of my life. He would be down here but can't because the border is closed between the U.S. and Canada but we talk on FaceTime everyday. Pat is having his own issues right now in the middle of a condo move so I so appreciate his support.
My co-workers at the hotel are also very supportive as are some of my neighbors. I hate to ask for help but one neighbor who offered help, I told her I might need her help to drive me to Philly to pick up Bill when he comes home. Good people are lifesavers at times like this. I just cannot imagine how I would cope without all this support.
Now to move that dangerous contraption in Bill's bedroom.Post note:
Monday, January 18, 2021
I awoke this morning about 6:30 AM to an empty house again. For the first time since Bill's fall last Thursday I felt the slightest glimmer of relief from my profound sadness of losing Bill. Maybe this was a result of talking to my friend Glenn on FaceTime yesterday about the loss of his longtime love Mike last month. He said when it got almost unbearable he took the advice of a psychiatrist whom he was seeing in his youth when he considered suicide because he was so depressed about his sexuality. The psychiatrist said to close your eyes and if you see a light, then there is hope. No matter how small the light, there is hope. I felt that this morning folks. Not much but there was something. Maybe my imagination, I don't know but even if I'm psyching myself, if this helps me to get through this...
I'm thinking of Bill and how often he said he's tired of living after he lost his sight (macular degeneration) a couple of years ago. He could no longer work on his electrical projects. He so loved working on those projects. This house is so wired up now I'll have to have an electrical contractor in to straighten things out. But Bill, being the thoughtful person he is, has tags all over the outlets explaining what they do. That's Bill, always, always, always, thinking of me. Always wanting to make life easy for me. Even my quarterly trips with Pat, he always missed me when I went away but said "I want you to be happy Ron." That's Bill, the most selfless person I ever met. That's what true love is.
I'm rambling. But it helps me to write about this. I get some relief.
This morning, for the first time, I thought about what I told Bill should he die. He never has to worry about me any more. Right now I know, as he lays in that hospital bed in the ICU unit of Thomas Jefferson Hospital in Philadelphia, he is worried sick about me and how I am coping. But if he passes away, he never has to worry about me again. We've had that conversation many times the past year or so as his health declined. I kept reminding him how he felt when he went under anesthesia for a medical procedure a few years ago. He didn't remember going under or coming out. He was just there. I told him that's the way death is. You don't know anything. It's just when you're alive that there is all this pain and worry. One thing I definitely didn't want was for me to die first. I could not leave Bill to deal with life without me and he said he wouldn't. He would kill himself because he would have nothing to live for. So as much pain as this is for both of us now, him worrying about me while he lays in his hospital bed and be sick with grief working about him and not being able to care for him, if he should pass before me, that is best. Now, if he does come home after recovering from this emergency and can come to his home here which he loves, sit in his sun room, watch the weather pattern on his iPad, listening to my stories about my latest experiences at the hotel; that's good too. I am so thankful he didn't have a stroke, and knows who I am.
Another thing Glenn brought up yesterday was that we who are so fortunate to find the love of our life, we do pay a great price when one of them departs. Oh how true that is. I always knew this day would come but I pushed it to the back of my mind. Hopefully that day is still off a way and Bill can come home after recovering and physical therapy so he can get around here at home.
Right now I am washing his big fluffy bathroom that he loves to sleep in. I'm going to give his bedroom a thorough vacuum cleaning, something which I could never do when he was here (he didn't like me moving things around him his bedroom which he has a shrine to me - way too many pictures of me).
I'll call Bill's nurse in about an hour (9 AM) to see if I can talk to him by FaceTime. I haven't heard anything from the doctors all weekend and may not today because of the Martin Luther King national holiday, but I want to find out if his recovery is progressing normally.
To sum up after my rambling, I have come to the acceptance that if and when Bill passes, he will be at peace. He will never have to worry about my welfare again. From that day we met in July on 1964 he has been my father, brother, son and protector. He has been my life. And I hope I can survive without him.
Sunday, January 17, 2021
|Bill and me July 4, 2009. That is Bill's lawn mowing hat. He put those extra doo dads on for our neighbor Barbara|
This morning I woke up at 4:30 AM for a bathroom visit. Couldn't get back to sleep. All my memories of me and Bill flooded back into my brain. I tried to get back to sleep but couldn't.
Best to get up and do something, to take my mind off of the huge sadness of these memories of me and Bill together, at least temporarily. I decided that I'm going to chronicle this latest chapter of the Ron and Bill Story.
I always knew this day would come. It was always in the back of my mind. Of course, like most young people when they are you, you think you are going to live forever.With me and Bill, I thought we would be together forever in good health. It was inevitable that one of us would decline. Whenever that thought came into my mind, I pushed it way in the back of my mind. I just didn't want to think about it. One thing is I didn't want to go first and leave Bill all alone. I just could not do that to him. This man who has devoted his whole life to me. This man who is the most selfless person I have ever met.
That rainy Saturday evening July 3, 1964 when I went over to Bill in the Westbury Bar Philadelphia, PA (the gay bar where I hung out with my friends) to thank him for the many drinks he had sent over to me for the past three months or so, little did I realize that Heaven had chosen for me my mate for life. I won't go into all the details but it wasn't love at first sight for me (it was for Bill) but I grew to love him that on this day I just cannot imagine living without him. I cannot.
All the good years we had together. Oh sure, there were "bumps" along the way. He had some terrific arguments but we always stayed together or shall I say Bill always stayed with me during my foolishness.
Bill wants to go now but is torn between leaving me "unprotected" and wanting is well earned rest after ninety-two years of living.
When I talked to him yesterday on FaceTime (which is difficult because he doesn't quite understand how it works and doesn't look into the camera to make eye contact), he was uncomfortable and agitated. I found out later that the nurses had just changed his sheets and had to roll him over. He said, out of frustration "I want to die!" I know how he feels. But then I saw him tightened his lips, suppressing a cry. God, this breaks my heart.
The past few months Bill and I have talked about our end of life. I mentioned that it would be best if we went together. Bill liked that idea. Didn't encourage it but seemed more relaxed about the situation. But of course we couldn't that voluntarily. I'm too chicken and I wouldn't want to be in a murder-suicide pact. I often thought an accidental gas leak int he house and we just didn't wake up. Oh how perfect that would be. We wouldn't even knew we died and there would not be this paid of potential loss for me and Bill's pain of leaving me. I know that is what is tearing Bill up, not being able to watch out for me.
He has this lighting contraption fixed up in his bedroom to show when the garage door is open, which I have accidentally left open overnight. Now he won't be here to monitor and protect me.
I protect Bill too. He doesn't like to take phone calls, deal with outside help, manage the household except for the handyman part. He was so worried that I wouldn't know how to mow the grass which was one of his main jobs. For years I promised him I would learn how to ride our John Deere riding tractor. Last year I finally did, after a near miss of plowing down my neighbor's fence during my initial run, and he was so proud of me. He said I looked so "butch" riding our John Deere. All this summer he would sit on the back deck and watch me circle our one acre of land, mowing our back yard. I got pretty good at it too. Oh how I wish he could see me again this year but I have this sinking feeling he won't be able to.
"Sinking feeling", that's what I have every day now.
I have this sinking feeling that although he's getting the best care possible at Jefferson Hospital, I know he uncomfortable and just wants to be home with me. I know he's worried about me (he always is) but he knows this could be the end of his life. All I want now is to send a few more months or more with him here at home. To be with him, listen to him tell his memories of his childhood and his Army and Air Force Days. I just want to be with him a little more.
My heart is breaking.
|Bill choking up when I heard me tell him I love him|
|This is where Bill is now, in the Intensive Care Unit of Thomas Jefferson Hospital, Philadelphia, PA. Even though Bill is getting the best care, this breaks my heart.|
|This is when I got through to him on FaceTime yesterday. He has macular degeneration and is hard of hearing doesn't have his hearing aid with him but he heard and recognized me. My poor Bill.|
I was reluctant to post these pictures but decided to anyway to show you the brutality of our situation today. Bill and I have often said that when our time came we wish it was quick, not this way.
The bruises on Bill's head and cheekbone are from his fall after his passed out from his a-fib condition. He hit his head on the dresser. I don't know how long was on the floor before I found him on the floor of his basement bedroom when I got up Thursday morning and he wasn't waiting for me in the sunroom like he always did in the morning. We had our usual routine when I rounded the corner from my bedroom next to the kitchen and said "Good morning Billy!" Then he would come over and sit in the high stool chair next to the kitchen sink while I poured him a small glass of peach juice, which he so loved, and I started cutting strawberries for my cereal breakfast. Bill would always give me a hug and a kiss, every morning. Sometimes I would start to go about my business and he would say "Oh no! You're not getting away with that, give me a hug and a kiss!" That was our little routine every morning. Then I would discuss what I was going to do that day. And I would include when I would take him for his daily ride. Sometimes we couldn't do the daily ride and he would know it. But whenever I went out, he went along. Since he developed macular generation he had to cut back on all his electronic projects, which took up a lot of his time and would sit most of the day in his Archie Bunker chair in our sunroom. Of course that chair is empty now and that's killing me too.
I have to stop now, said enough for today.
This has helped, in a way. Painful to dredge up old memories but helpful in that I'm doing something to help my mind escape the inevitable.
I'm getting tired now, I may lie down and take a short nap. I can see the sky lightening from the window to the right of me here in my home office. The time now is 6:50 AM. This reminds me of many years ago when Bill's favorite dog (Pomeranian) died in his arms at dawn, just before sunlight. If there is a Heaven, Bill will be with her again. She always made Bill so happy and Bill has made my life so happy.
Saturday, January 16, 2021
|Bill's Christmas lights|
Bill is still in the ICU unit of Thomas Jefferson Hospital in Philadelphia.
I've talked to him several times on FaceTime. His nurse was very kind to offer her personal iPhone to make this happen.
Bill is still somewhat confused. It's hard talking to him on FaceTime because he doesn't have his hearing aid (it's here) and he never did learn how to look into the iPhone. I tried many times to teach him here at home so I could communicate via FaceTime when I was away with Pat on one of my quarterly trips. I finally gave up and sent him e-mails, which he was more comfortable with. He couldn't figure out the text message thing either. However, I am so grateful that his ICU nurse offered the use of her iPhone so I could see Bill.
The doctors are now giving him blood thinner medication to treat the four blood clots he has in his lungs. I assume the bleeding in his brain (which I think was caused by his two falls) has subsided. They asked my permission to do brain surgery if the bleeding increased in his brain so they could take down the swelling. Of course I turned that down as Bill would want me too.
This morning I didn't manage to get a reaction out of Bill when I told him I love him. He loves hearing that from me here at home. He started to tear up. Then I tried to tell him something else but I don't think he could hear me. He doesn't look directly into the camera on the iPhone so I'm not making direct eye contact with me but he knows it's me by my voice.
His nurse suggested that I set up a time to call him every day. We set up a time at 9 AM and 3 PM. I called him at 3 PM but it was delayed by about fifteen minutes. When I did get through to him he was very agitated. With his eyes closed he was squirming in his bed and saying "I just want to die". I shouted to him "Bill, don't say that." Then he stopped but I could see he was very frustrated. I couldn't figure out why. He pleaded for a drink of water from his nurse. She gave him a drink and said "How was that?" Bill said "You don't want to know." Then she said "Would you like it cold?" He said "Yes." And he's not talking in normal conversational tone of voice. I can tell he's very agitated even though he's getting the best care possible in the world at Thomas Jefferson Hospital. During an earlier call he told me I owe all his nurses a dinner out "on you credit card!" (what was that all about?) because they have been so nice to him. But after this conversation I was bothered so I called about an hour later and asked if I had awakened him up with my phone call. She said I hadn't but they had just changed his sheets and had to turn him over. I think he was still hurting from his fall here at home because when the EMT guys picked him up he was yelling in pain.
Folks, I have to tell you I am a mess here. I knew this would be bad but I didn't think it would be this bad. Not to dwell on myself but I am now feeling so guilty for all those times I was annoyed with Bill. For not spending more time with him.
Oh I hope and pray (not religious here) that he will come home and I can give him quality time for the rest of his life be that months or even years (which is what I'm hoping for). But from seeing him today, he's not ready to come home yet.
I've been trying to cope here but I don't think I've been very successful. Writing in my journal and writing this blog helps. Also calling friends which I did late this afternoon when I had a three way FaceTime conversation with Pat and Don. Thank God I have them to help me through this, the most difficult time of my life so far.
The photo at the begging of this blog is of the Christmas light I have strung across the sun room (Bill's favorite sitting place) to the living room. Bill so loves those lights. We keep them up all year. Only problem now is those lights seem to be missing Bill as much as I miss him.
This is hard folks. Very hard.d
Bill has devoted his whole life unselfishly to me. He has never wavered in the fifty-six years we've been together. He has literally always been there for me, even after my most foolish escapades (of which I am too ashamed to even tell you about and I won't). Bill never wavered, not once, always, always, always there for me. I so want to have the opportunity to have him here at home again where he is so happy with his colorful Christmas lights (he hates the plain white ones). I want the opportunity to make him comfortable and happy, just the two of us. My heart is breaking seeing him like this. That I can't hold him and tell him I love him.
Ever since he lost his sight (macular degeneration which they discovered when his cataract surgery didn't work), he has been so frustrated because he couldn't do his electrical projects. But even with his bad eyesight he has managed to put tags on all his electrical work just in case he's not around anymore. That's Bill, always, always, always looking out for me. Always doing for me. I don't deserve him. Why I was so fortunate to have him in my life all these years I do not know. But I did know I was one of the chosen few who had such a special relationship. I always knew. But I too often I took Bill for granted.
Friday, January 15, 2021
|Bill with Sparky, one of his favorite dogs - 1972|
As I type this blog entry, Bill is at the Thomas Jefferson University Hospital in Philadelphia, PA. He was helicoptered there yesterday afternoon after the doctors at the local hospital emergency room determined that he was near death from blood clots in his lungs.
I was very reluctant to post this information but now that I am over the initial shock of finding Bill unconscious on the floor of his bedroom yesterday morning and had to call 911, I am writing this information, bad as it is, as a continuation of the saga of the life of me and Bill.
First of all, briefly, Bill's medical condition. He had bleeding on the brain (probably from the fall yesterday and the one a few days ago in the kitchen on the hard tile floor) which made the doctors' reduction to administer blood thinner medicine for the blood clots in his lungs. A further ultra sound found blood clots in his legs as well. Last night they inserted a medical filter device to prevent those blood clots from going to his heart and killing him.
I had several discussions with the doctors in what to do in the worst case scenario (which is still hard for me to fathom) but what Bill and I have always agreed on, no extra and above medical procedures to keep him alive. Minor surgery list the device to block those blood clots in his legs were all right but no brain surgery. At Bill's age even if he survived the brain surgery (to relieve the swelling from the bleeding in his brain of which there is no guarantee of recovery) his quality of life wouldn't be worth living. Same thing with resuscitation (breaking of his ribs) to get his pulse going again.
I was almost over the edge last night with concern that Bill would die. I just cannot imagine my life without Bill. Fifty-six years is a long time to spend with one person, sharing your most intimate thoughts and everything. Bill has devoted his whole life to me, without him I have a hard time imagining even existing as a whole person.
While talking to his nurse in the ICU unit last night she asked me if I wanted to FaceTime with Bill. Would I? YES! That brought me to tears. She took her personal iPhone and I talked to Bill on FaceTime. He was in and out of it but he did know who I was. He didn't know where he was or how he got there (he finally got his helicopter ride but what a way to get it), but he DID KNOW ME.
Since then I've talked to him several times on FaceTime (making a pain out of myself with his nurse but she's so nice) and he's a little more with it.
I think he's over the most critical period now. They're going to start doing physical therapy with him now. His doctors have prescribed blood thinning medication. I was given the option of sending him to rehab or have him come home here. Of course I want him home. They warned me that I might have a problem lifting him (Bill weighs about 180 lbs) but I assured him that I can manage with the occasional help of my neighbor who also helps another one of our neighbors who has a propensity to fall.
I called in to work to take a leave of absence. I will be here full-time to take care of Bill.
I just cannot wait until Bill comes home. This is not a home without Bill. When I came back last night I saw several things right off the bat that reminded me of Bill. The overripe bananas that he so loves. His uneaten Werther's candy cream that he so loves.
Bill and I have often talked about when the day would come that one of us would check out. That one of us would die. We all get our turn.
We agreed that it is best that Bill goes first. Of course he's worried about me but I can take care of myself. Except maybe psychologically. If I died before, Bill said he would kill himself because he would have no reason to live. Actually Bill would go crazy. I know Bill. Also, Bill is tired. He's often said he's tired of living but only stays around because of me. And I have to admit I'm selfish, I want him around. But what I have also told him is that when he dies it's like going under anesthesia, he doesn't know anything. So there is no need to worry about me. He will have that eternal rest that we all here about that is our eventual reward. I don't believe in Heaven or Hell but if there is an afterlife, it is Heaven. If and when Bill dies he will be reunited with his pets, friends, relatives, parents, my parents, and so many others we have know who passed on. Bill has outlived almost all of them.
I have been so fortunate to have Bill in my life for the past fifty-six years, but I am greedy. I want him just a little bit longer.
I'm not religious folks except now. Pray for Bill and pray for me. This is the hardest thing I've ever had to do in my life. I hope I can make it through. I have to admit that sometimes I feel like just laying down and going to sleep and never waking up. But of course I would never do that as long as Bill is alive. I am here to take care of him. I am privileged to take care of him.
This afternoon I called another friend who recently lost his longtime partner/husband. It was good to talk to him. Ironically he had sent me a letter that I received last night when I came home from work at the hotel to a house empty of Bill, there was his letter from him. I had never talked to him before but to his husband who had been following my blog for many years. He informed me that his husband was ill the past two years and he was caring for him all that time. I did not know that. I wondered why he stopped commenting on my blog. He did tell me how much his husband like my blog. Now I feel guilty for not posting more often. It was good to talk to him (which we did for about two hours I'm embarrassed to say) over FaceTime. Then we had a three way conversation with Pat, my Rock of Gibralter. What would I do without Pat? See how fortunate I am? If I didn't have Pat, I can't even comprehend that life.
The latest information from Bill's doctors (and I may be repeating myself here) is that they're doing physical therapy on Bill now to get him up and moving around. I will have to go to a physical therapy class. Then I can bring Bill home and maybe have more time with him. Oh God, I hope I can have more time with him. After all, I need somebody to eat those blackened bananas.
Tuesday, January 12, 2021
|Insurrectionists at the Capitol Building beating a police officer to death|
Last Wednesday I was sitting at this computer updating my online Scrabble games with Pat. As usual, I had my TV on to my right as background noise. I rarely sit in front of my TV and just watch TV except for my Netflix movies.
On my TV was live coverage of the Senate's ceremonial verification of the Electoral College votes for the presidency. I was aware that Trump wanted his vice president Pence to do something he wasn't authorized to do, not accept the Electoral College results naming Joe Biden President and Kamala Harris Vice President. Of course Pence, whatever you think of him and I don't much think of him with respect, even Pence wasn't going to do something which he wasn't authorized to do by law, overturn the results of the free and fair election in which more voters voted for Biden than Trump.
As I was concentrating on my seven tile board to perhaps score another BINGO, I heard a lot of shuffling and words of concern on my TV. I turned around to look and I saw members of the House running for safety while the Capitol building was under assault from Trump inspired seditionists and traitors, seeking to overthrow the election results by force. For the next eight hours I was riveted to the TV, at times in disbelief and other times angered. And then I was saddened to realize that so many of my fellow Americans were so easily conned by such an obvious con man as Trump.
Like 9/11, I will always remember where I was when these traitors assaulted our seat of democracy. I will remember where I was when Trump and his enablers tried to keep him in power by a violet coup.
I have no doubt that these traitors intended to harm and even kill lawmakers like Nancy Pelosi and even Mike Pence, who they shouted they wanted to hang.
We are witnessing history folks. There is so much going on in our lives today and in my life. This morning I woke up to find my Bill on the floor in the kitchen, unable to get up. I will go into more detail later but Bill is 92 years old and failing physically. I was able to get him up off the floor (he doesn't remember how he fell) and I will closely monitor him a I have been doing for some months now.
Stay safe folks. We'll get through this.
Monday, January 04, 2021
Deaths from COVID are rising dramatically across the United States. This dramatic rise has to do with families getting together for Thanksgiving, Christmas and New Year's. These family gatherings and public celebratory gatherings are super spreader events.
Bill and I haven't participated in any of these super spreader events. However, we are exposed nonetheless. I shop at our local supermarket several times a week. I work at the hotel twice a week. Our neighbor visits us at least once a week. He never wears a mask. In fact, I don't think he even possesses a mask. He's a good neighbor but he is a total Trumper, buying into Trump's lies about the election and, I'm sure, Trumps lies about the seriousness of the COVID pandemic. I know he goes fishing several times a week with his buddies. Also, during the holidays he had various family member visit him.
Me and Bill, even before this pandemic hit, stay pretty much to ourselves. We never have company over. We used to years ago, but Bill preferred not to have company. At this time of his life, I'm trying to make Bill's life as stress free as possible so no company.
One of my really big worries that I try not to think too much about is me dying before Bill. Bill is so dependent on me both emotionally and taking care of our home life management and doctor's appointments. I can tell you right now, if I'm gone Bill won't be too long behind me.
Here I am talking about life and death again. But this is something I have to seriously consider.
If I should die I think about all that I haven't done but then it won't matter if I die because I wouldn't know the difference, would I? I'm often concerned with what would happen to my "things" (photos, furniture, journals, paintings, et al) if and when I die. Again, it doesn't really matter does it because once I'm dead, I won't know the difference. Of course I'm still trying to reconcile this fact in my mind so I'm comfortable with letting go of all those "things." Still I can't help but be saddened to know that so much that I have worked for and accumulated during my long life will be trashed. And yes folks, that is what will happen, trashed. But I have some solace in knowing that I enjoyed these "things" while I was alive.
I hope I'm here next year or at least when this whole COVID pandemic has receded from our every day life. Like millions (billions) of my fellow inhabitants of this earth, I am so looking forward to life going back to normal. Life when sports stadiums are filled with cheering fans, when families can get together during the holidays, weddings, reunions and just living together. When all this fear and sadness is just a memory like the Spanish Flu pandemic of 1918. One thing I am thankful for that his pandemic didn't happen during my prime working years. I just can't imagine trying to survive without a paycheck like so many families are trying to now.
Stay safe everyone.
Sunday, January 03, 2021
Above, me and brother John at a much earlier outhouse (1947), which visiting our step-aunt Mary in Compass, Pennsylvania.
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