Medical Update

 

Delaware's right to die law takes effect January 1st, 2016.

Just got back from my annual checkup with my urologist. 

My PSA score has shoot up from 1.1 last year to 1.84 this year. That's the largest jump since I had prostate cancer surgery (seed implants) back in 2013.

It looks like my prostate cancer has returned.

We're going to do some more tests though. 

In six month's we will check my PSA score again. Also, we scheduling a PET-SCAN in June to see if the cancer has spread to other parts of my body.

I may need to get another biopsy procedure which I hate. At least this time I'll be put to sleep. Last time I was wide awake without any sedatives, not even a twilight one. It was hell. I never want to go through that procedure again without some kind of anesthesia.

How am I feeling now? A little bit shook up, of course. But I was expecting something like this eventually. I've had a good run since 2013 when I had the radioactive seed implants.

I hate getting on the medical treadmill again but my urologist said "we have several things up our sleeve to prolong your stay." One is hormone therapy. Yes, I want that one. I'll cross that bridge when I get to it.

As I've said many times before, I just hope I die in my sleep. I don't want to go through long, painful and uncomfortable procedures just to prolong my life by a few months or a year. 

Also, as I've mentioned before, Bill is in constant contact with me. He did give me the message "We'll be together soon." 

Just Chilling Out Here At Casa Tipton-Kelly

Me and my younger "James Dean look-alike Isaac back in the day when we were young and pretty. Photos taken from an old 8mm film. We're both squinting from that bright light that the old 8mm cameras had to use. Film taken in 1958. 

 Oh my goodness, it's been about ten days since I've updated my blog. 

All is well here at Casa Tipton-Kelly. Bill has made the transition off of home hospice care, which means no more bi-weekly visits from Corrine, our wonderful hospice nurse.

Bill's health has stabilized albeit he is weaker. Very gradual though, nothing dramatic. What is noticeable though his deterioration of cognitive functions. He knows it too. But we're managing. We finally got over the stuffing wash cloths in his Depends to catch any "drippings." But Bill is still mobile, not in pain and knows who I am. That's my benchmarks for continuing to take care of Bill.

My big problem now is keeping ticks off of me. I've had a couple more ticks bits which resulted in infections. As much as I try to avoid the ticks I'm still discovering them on my legs and inner thighs but thank goodness none in the nether regions (remember that one last year)? I have a routine now when I go outside, I always wear my combat boots with my pant legs tucked in. Sure, it's a pain to put on and zip up those combat boots but well worth it not to go to bed at night and feel a sore spot on one of my legs and discover yet another tick imbedded!

Now when I come in from outside I completely change my pants and take a shower. Yes, every time. 

Last week I awoke to the swooping roaring sound of one of our local crop duster bi-planes. Thank goodness, finally spray for the mosquitos. Now we have nary any mosquitoes outside. At least I don't have to fight them now. The mosquito spray is supposed to take care of the ticks too but I'm not taking any chances. I still found some ticks on my legs after the mosquito spray.

Bill and I are settled into a comfortable routine now. I continue to miss my quarterly trips with Pat but those trips are out of the questions now. Pat can't afford to take the trips anyway because he took quite a loss on the sale of his condo in Hamilton, Ontario. He had to get out of that situation, the costs were just too horrendous. His monthly "maintenance" charge was $890 a month! And he wasn't getting anything for it! I don't want to embarrass him with divulging all the details but suffice it to say he's in a new dwelling in Hamilton. It's a very small house, which is what he wanted, and not far from the center of Hamilton where all the activity is, which is what he likes. Pat could never live here in quiet Delaware where I live. He would be bored to death. He needs a lot of stimulation. I like to visit places like Philadelphia, Palm Springs, Los Angeles and Canada but I prefer to come back to my home base here in southern coastal Delaware in my very quiet neighborhood. 

This morning I was talking to my one remaining surviving brother he lives in the old family home in southeastern Pennsylvania, a suburb of Philadelphia. He's having a lot of pain in his right leg. He misses our younger brother terribly. They were always very close and talked almost daily. Isaac (my brother) lives along with his ten year old cat "Ditto". She's good company for him.

Me and my brother Isaac (Ii'm in chair and Isaac is slumped over a hassock) watching TV in the Fifties. I was about twelve years old and Isaac eleven. Check out those curtains, they were plastic!

He has a son who lives nearby who visits him often. He also has two daughters but we won't go into those stories. You know, "families." Isaac is convinced that I'm going to be the last surviving member of our family. I don't know about that. I did tell him that I he can have one of my grave plots at Northwood Cemetery. I bought two plots after our father died in 2000. I was planning for one plot for Bill and one for me but I've decided that Bill and I only need one plot. If Bill dies before me I'll have him cremated and keep him with me in a jar until I die. His ashes can be buried with me thus I have that extra plot. This is ironic that I probably will be buried next to my MAGA brother. Yes, he's one of "those" but we both know not to "go there" when we talk. As he told me when he reached out to me last year after a year or so of estrangement over out latest blowup (political), "Ronnie, you're still my  brother and now your'e my ONLY brother." 

Me and Isaac at one of our family reunions 2011 - photo was a candid shot (the best kind, not posed) taken by my friend Mark Himes. Where are you these days Mark?

And he's right, set aside political differences but for the life of me I still don't see how he can support The Criminal Trump and the Traitor Coward Republicans. I'm no fan of Joe Biden either (terrible communicator and probably too old to be president) but I would vote for Joe Biden in a casket before I would vote for any of these Republicans now. 

This is Friday night here in southern Delaware. I just finished rewatching the "Breaking Bad" series. Even though I saw this whole series several years ago, I thoroughly enjoyed watching it again. There was so much I had forgotten. And rewatching it I found I felt differently about the characters. For one I don't like Walter White now. I actually liked Gus Fring. I understand him. I found him sympathetic. Does that make me a bad person? And Jesse, he brought everything on himself. I had zero sympathy for him. What a douche! I hated Hank during my first watching of "Breaking Bad" but now I liked him. He was just doing his job and he was good at it. I followed up watching "Breaking Bad" but watching the whole series of "Better Call Saul" which was equally good. But I did end up hating Saul, or "Jimmy" which was his real name. Now I'm looking for another good series to bury myself into. This is how I spend my time now, taking care of Bill, taking care of myself, avoiding ticks while working in our backyard and watching a good movie or series in the Tipton Cinema. It's a good life folks!

Dinner time now. Corn on the cob tonight, Royal Farms biscuit and Good and Easy Beef Stew. 

Recipe for "Good And Easy Beef Stew"

2 lbs lean round steak cut into cubes

1 can Campbell's Chicken and Mushroom soup

1 packet of Lipton Onion Soup Mix

1 cup of white wine

Mix all together and put in Crock Pot on low for eight hours. 

Serve over mashed potatoes.

DELICIOUS!!!

Bill's Emergency Room Visit

Bill waiting for his vascular surgery early this evening

 Bill is in the hospital tonight. 

Earlier this evening he had emergency vascular surgery to remove massive blood clots from his right leg.

Two nights ago Bill woke up to a tremendous pain in his right leg. I noticed the next morning his right leg was swollen. I decided to monitor it. This morning it was worse, much worse. I called the VA to get authorization to go to the Urgent Care unit in Lewes. They took one look at his leg and told me he had to go to the Emergency Room right away. They took us right away. 

We spent all day in the Emergency Room. I ate the hospital food (I was famished) because Bill couldn't. He has trouble swallowing. They said they could do the surgery tonight which we both agreed to.

I left Bill and the hospital and returned to our darkened home. It's always so empty when Bill isn't here. As much as I complain about being a full-time caregiver without a break (two years tomorrow) I sorely miss Bill when he isn't here. It breaks my heart to leave him all alone in the hospital. He depends so much on me not only for care but for emotional support. I know he will spend a sleepless night tonight but he will be home tomorrow. 

 

Results of Doctor's Appointment Today

Good news folks!  

This morning I had my annual ultra sound to check on the aneurism I have on my aorta valve. The technician said that it "looked better" than the image he took last year. He said it either "got better" or last year's picture was at a different/bad angle. He checked several angles this time and my aorta aneurism hadn't changed, which is GOOD NEWS. 

That means for now I can put at rest the need for finding someone to care for Bill should I need surgery. No surgery for now or for the rest of my life I hope! I've had enough surgery in my life. 

Now to continue with our life here on this rainy early winter day in southern Delaware. 

Have a great day everyone!

Ron's Medical Update

 

It was nice while it lasted, my brief respite from doctors' appointments. 

Tomorrow at 8:45 I have an appointment at my cardiologist's office for a vascular test. I've never had a vascular test before. I know I have hardening of my arteries. I'm old. I've read up on vascular testing and was relieved to find that it's not invasive or painful. Thank God, I've had enough of those procedures to last me a lifetime. 

So they find I have hardening of my arteries. What's next? A stent? That could be anything from an outpatient procedure to a four to seen day hospital stay. Who will take care of Bill if I'm in the hospital? He can't take care of himself. I have an idea in mind. No strangers in our house though. 

In a couple of weeks I am also scheduled for something called a Dopler test. I'll have to read up on that but again it is yet another test for my failing heart. 

I also have my annual full body check at my dermatologist coming up in two weeks. That's painful because I have to expose my sagging body to the (usual) very nice young lady who checks out this body that's been around the track more than a few times. Almost always they find something to burn off. Hopefully no more skin cancer sightings and just the pre cancerous keratosis lesions that they have been burning off for the past forty years. All that working on my tan in my Foolish Youth, I'm paying the price now.

These days I have a constant respiratory problem.  Phlegm constantly builds up on the base of my throat causing me to always clearing my throat. I take daily medication for this condition so at least I don't have the sensation of feeling like I'm choking. The medication moderates the condition but doesn't remove it. 

One condition I have that is causing me concern in the weakness in my legs. I'm unsteady on my feet. I find it extremely difficult to climb stairs.  And when I get down on the floor or ground, it is extremely difficult for me to get up because of the weakness in the back of my upper legs. I've had this condition going on over twenty-five years or more now. One of the reasons I wanted to move from our home in Pennsylvania that our house was on the side of a hill which I found difficult to walk around outside. I also had a problem walking upstairs to my bedroom and bathroom in that two story farmhouse style house. Here my bedroom is right round from the kitchen. We have three floors in this house though. When I go  upstairs or downstairs to Bill's bedroom I have to hand on the bannister. I manage but it is getting more difficult. 

I'm falling apart folks. Incrementally, but inevitably I am deteriorating. Now that I've bemoaned my failing physical condition I remind myself how lucky I am that I am still about to get around on my own and care for Bill. My eyesight is great now after my cataract surgery. I can hear good, even though I occasionally need my new hearing aids at the end of the day. My audiologist says I don't have "profound hearing loss" like Bill. By the way he has an audiology appointment next week. 

Yes, even though I have this myriad of medical issues I am way better off than many of my contemporaries. I take nothing for granted folks. And I am appreciative that I can still drive my car and otherwise function around the house here. Granted, I did realize my limitations when I had that kitten for a couple weeks. As much as I loved that kitten (and yes, I still miss her, she was a sweetheart) caring for her showed me I do have limitations. 

Now it is time for our Daily Ride. Today I'm making one of my almost daily trips to our local Food Lion supermarket. Have to get more egg nog for Bill's oatmeal. He LOVES that egg nog. It's made locally. Contains about 2,000 calories per cup, and cost $9.99. Yes, $9.99. That's up from $4.99 last year. 

Have a great day everyone!

Medical Update - Ron

 Just got back from my six month checkup from my hematologist. Six months ago I had a bone marrow procedure (if you haven't had one of those, try it!) because my VA provider was worried about my low oxygen blood count. It's still low but I don't have blood cancer. 

Seems like I'm collecting cancers. I've had prostate cancer (2013). Skin cancer (2021). Next up? Thank goodness my latest blood test came out no change. Next checkup seven months from now. 

Last week was a real treat, NO MEDICAL APPOINMENTS! Not so this week. Tomorrow I have my month post op cataract surgery checkup. Then to get ready for cataract surgery on my left eye.  The cataract surgery went well for my right eye. I see clearly out of it now, after about a year of looking through a very cloudy eye. So thankful I have my vision back. And I don't even have to wear glasses for driving. In fact, I can't wear my prescription sun glasses for driving, I had to get plain non prescription sunglasses for driving. What a treat!

I was very sick last Saturday. I don't know if I had COVID.  I was too sick even to take the test. I had taken one three days previous and it came up negative. I'm a lot better now. Just to tell you how sick I was, they had one those loud concerts in the field directly across from Casa Tipton-Kelly and I didn't even care with the "BOOM! BOOM!" until 1 AM in the morning. Actually, they're supposed to stop with the "music" at 11 PM but we're here in southern lower slower Delaware. Delaware is a blue state except for Sussex County, still too many redneck yahoos down here who just don't care who they bother. And yes, I've been told to move back to Pennsylvania if I don't like the "BOOM! BOOM!" at 1 AM in the morning. 

And last but not least, we have finally got a break from the oppressive heat and humidity. The past few days have actually been very nice. Sunny, breezy, and in the 70's to low 80's, normal weather like I remember from my childhood. So it wasn't my imagination. 

Have a great day everyone! I got a health reprieve and I'm very happy!

Bill's Medical Update

 

One of Bill's hospice nurses taking his blood pressure, which is normal now thank goodness!

After fourteen months on home hospice care, yesterday Bill's hospice nurse and I determined to discharge him from home hospice care.

The reason was that Bill's conditioned has "stabilized." That means he's not getting worse.

Bill still needs my assistance in dressing, showering, preparing his meals and administering his medications. Because of his blindness (macular degeneration) and cognitive damage because of his strokes he will always need someone to assist him in his daily routine. 

I was worried about getting him off of home hospice care because if he had another stroke, both of us didn't want him to go through what he went through last year trying to save his life. Save his life they did for which both of us are very thankful but no more. The main reason being because of Bill's blindness. He can't do what he used to do. So often Bill gets depressed because he can't read or do his projects which he used to love so much doing. Now he feels he has no purpose in life. I try to get him focused on the many positive things we still have in our life. Most days I'm successful. 

However, I need not to worry. Bill's hospice nurse told me yesterday that if Bill starts to fail he can go back on home hospice care. She said that is a lifetime benefit of Medicare. Wow, what a relief that is for both of us. If Bill had another stroke that doesn't cause his death, neither one of us wants extraordinary measures to keep him alive. May sound harsh, but that is our decision. We've both had long, good lives. Oh sure, a few bumps here and there but overall we have been extremely blessed with a good life. When our time comes, we will be ready.

Cataracts And Other Observations of Today's World

It is time for my cataract surgery. My right eye is always cloudy now. 

For the past several years my eye doctor has told me that I have cataracts forming in my eyes but that surgery wasn't necessary.....yet. Now I think it is time. 

It is annoying to look out my right eye and see that permanent cloud. I look at my eye at it looks clear from the outside but that not what I'm seeing from the inside.

Now the question is "What to do with Bill during my surgery." 

The surgery itself only takes about two hours in all from the times I check in until I check out. I know this because Bill had cataract surgery several years ago.

Bill always goes with me to my myriad of doctors' appointments. He sits in the car and waits for me. Having him sit in the car for over two hours would be too much for him.  Of course I could leave him here at home but I don't trust him. Just this morning he was on his step ladder putting more masking tape over the heating/air conditioning vent in his bedroom. Bill is ALWAYS  cold and he is fearing this summer when I have to have the air conditioning run-in our house. I one of those persons who cannot breath in heavily humid air. Some of my friends don't believe me, they say "you can acclimate yourself to the heat and humidity." Of course that would be Pat. But I can't. I literally feel like I'm smothering and on the verge of passing out. I guess a dead Ron would prove to him that I can't take the humid heat. Regular heat I can take (Palm Springs) but this humid heat that is produce here on the Delmarva Peninsula with has the Atlantic Ocean on one side and the Chesapeak bay on the otherwise, it's a potential killer for me.

My appointment with my eye doctor is May 9th. I'll work something out with Bill. If worse comes to worse he'll just have to stay home by himself that morning that I have my cataract surgery.

I also put in a call to my gastroenterologist. It's time for my every three years colonoscopy. Same thing, I'll be put "under" for a period of time early in the morning. Again, I'll have to work something out. I guess I can ask my neighbor Bob M. to look in on Bill. He's the widower who lives next door with his late wife's Yorkie, that I have to walk in about an hour because Bob's off fishing today. I hate to ask him to watch Bill but I'm pretty sure he would do it. There is no one else to ask. I can put Bill in the hospice center for a day but he won't hear of it. 

Whenever I feel the world closing in on my when I'm in one of these quandaries I say to myself:

"Self, it could be a lot worse. You could be living in Ukraine next to the sub human Putin and his murderous Russians destroying your country while bombing, torturing, raping and killing your innocent civilians. Yes Ron, life could be a LOT WORSE. This is nothing."

Then again we are living in a country where one former president is above the law, not held accountable for a lifetime of crime committed bracingly in public and still roaming free after a failed coup attempt to overthrow the last election. 

We are living in a country where one political party (the Republicans) have no shame in perpetuating the Big Lie that Trump won the last election and are doing everything in their power to undermine our democracy right now. These are perilous time we live in my friends. About half our country is brainwashed and the other half is just trying to survive day to day. Then there is Ukraine. Could be a lot worse. Thank God we have neighbors like Canada and Mexico. One country can't wait to get into our country to raise their standard of living and the other country (Canada of course) is a paragon of excellence and good neighborliness. And then you have Ukraine who has the misfortune to have monstrous Russia as their neighbor.

Exhausting

Blister on palm of hand

 Just finished a few minutes ago getting Bill ready for his day. It's not getting any easier folks.

This morning was especially difficult because I have a blister on the center of my left hand palm. That was as a result of a wart being burned off yesterday at my dermatologist's office. It hurts like Hell. I can't pop the blister, I have to let it heal on its own. This makes it difficult for me to hold onto Bill's hands when I pull him up from his recliner that he has slept in overnight. A blister on the center of your left hand palm makes every thing more difficult. And it hurts like Hell.

Seems like I get one thing fixed on me which always results in pain I have to endure. I have the constant respiratory problem that I've had the past few years. Phlegm builds up on my throat that I have constantly clear. My nose runs constantly. 

My legs are weak and getting weaker. When I bend down to help Bill put on his daily change of Depends I need the help of his walker to get up. And that's getting harder as my arms weaken. My legs have been weak for years, that's why it's so hard for me to walk up stairs.

Now there is a new problem. I have to give Bill pain pills three times daily for his arthritic pain. Already I'm cutting them in half. He's always had trouble swelling pills because of his narrow esophagus. I may have to cut them in quarters. At least that's one problem I don't have, swallowing pills. 

I'm tired folks, tired, tired, tired.

What keeps me going, the carrot at the end of the stick, is that someday I may be able to retire to that beautiful home in Palm Springs. No more snow, no more pain, no more housework, no more lawn work, no more caregiving. 

I'll say it again and again, I'm thankful that I have Bill here at home and able to be his caregiver. I'm luckier than most because my caregiving responsibilities are minor compared to many other caregivers. And I am caregiving for a kind and gentleman who knows who I am an appreciates my caregiving for him. 

Both my brothers were caregivers for my Mother. I knew my turn was coming.

When my friends Bob McCamley and Wayne "The Cajun" Juneau needed a caregiver to take them out of the hospital when I visited them, I demurred.  I've always felt guilty about not taking them into my home even though the hospital wanted somebody, anybody to release them from the hospital. I knew that I couldn't do it because I was already taking care of our whole household if not physically taking care of Bill. But I always knew I would "get my turn." It's "my turn" now folks. And I'm here to tell you, it isn't easy. And please, no suggestions to hire somebody to come in and care for Bill. I can't afford it and Bill wouldn't stand for it. 

I go one day at a time. If I get through the day I count that as a winner. Then tomorrow it starts all over again. It would be nice though when this blister pops. It hurts like Hell.

Doctors' Appointments

 

I have become my Mother.

I used to tease her about all the doctors' appointments she had in her final years. She would respond "You're time is coming." Well folks, it "my time" is here.

Today I took Bill to the VA Outpatient Clinic in Georgetown for his COVID booster shot. I asked about getting a fourth COVID vaccination for myself and they told me it wasn't ready yet.

This morning I had my annual CAT-SCAN to check up on any kidney stone production my body insists on making despite my pleas to "please stop!" 

I see my urologist next month to go over that CAT-SCAN. 

He also wants me to take a blood test to check my PSA levels. I am a prostate cancer surviver, nine years now since I had my radioactive seed implants. Hooray!

My oncologist's office contacted me yesterday. She said the good doctor wants more blood tests. It seems I have a low oxygen white cell blood count. I'm "right on the border" according to my oncologist. "On the border" to what he's not exactly saying but I suspect it is blood cancer. What else could it be? Lymphoma. My youngest brother had lymphoma. So far I don't show any signs but who knows what the future holds for me? I hope a lovely modern home in Palm Springs with a low HOA on fee land and a fabulous view of the San Jacinto mountains.

My oncologist had also scheduled an ultra sound. 

So here we are, three tests scheduled at three different locations for two different doctors. How about scheduling them all at the same time (morning preferably, I need my afternoon nap), at the SAME location. That is what I did this afternoon. Took some doing but after I scheduled them all at the same time then I had to reschedule when I would see my oncologist who would probably give me some more concerning news. At my age folks, eighty for those of you who don't follow this blog on a regular basis, getting results of medical tests is always concerning. 

I still remember the first time I got the results of my prostate cancer (torture) specimen (took 12 samples of my prostate gland by stringing me up like a woman having a baby) and the doctor very matter of factly said "You have cancer." I felt like the Walter White character in "Breaking Bad", I wasn't hearing what I was hearing, all I could concentrate on was the mustard stain on my doctor's tie but he didn't have a tie. 

So there you go folks, I'm on the medical treadmill again. It gets discouraging but as I always tell myself, it could be a lot worse. 

Another Doctor's Appointment

Cancer Center waiting room with proper social distancing

 Yesterday I had another doctor's appointment. This one I was dreading. 

It turned out not to be too bad, at least not yet.

The appointment was for 3:00 PM at the Tunnell Cancer Center. That's where you want to have your doctor's appointments, at the cancer center.

I've been to this cancer center before.  It was where I had my prostate cancer treated almost to the day eight years ago. I am familiar with his place. I am familiar with seeing people in the waiting room gaunt, gray and thin. Obviously in the last stages of their cancer disease. 

After filling out the obligatory paperwork (I was told I was a "newbie" because it had been so long ago that I was there, anyone who had been there the last three years wouldn't have to fill out their complete medical history again), I was told to wait until I got a text message to "Meet Under the Stars." This waiting room  has an area of the ceiling that has a lot of little lights against a black background, replicating space. 

I had a long wait, not quite an hour then it was my time to "meet under the stars."

I was taken back to one of the rooms to wait for my doctor.

When he arrived he said "So, what are we here for?" Here we go. I explained that my nurse practitioner at the VA was concerned with my low white blood cell count. The doctor looked at my records and told me "Your white blood cell count is on the low end but not serious but I would like to monitor it." After some more discussion he wrote up three doctor's orders for blood tests. That where I went this morning, to get those blood tests. 

He said he would like to see me in about a month.

So that's where we stand now. I live for another day!

One Year Ago Today

 

Bill, January 13, 2021 one day after his first fall

One year ago today, I began my day by walking around the corner from my bedroom to our kitchen. I almost tripped over Bill, lying unconscious on the floor by the refrigerator.

Bill always got up before me.  I was used to seeing him sitting in his chair in our sunroom. I would greet him with my favorite pet name (which I won't divulge here). 

This morning as I looked down at Bill lying on his back, his toupee knocked off from his head, I was momentarily stunned. Was he dead? Why did he fall? 

I knelt down, placed his toupee back on his head,  and tried to get him up. He groaned and slowly came too. I asked him "What happened?" He groggily said "I don't know."

I don't remember much of the exact sequence of our following conversation other than I began making is breakfast of oatmeal and started our daily morning routine. We talked about about why he would have lost consciousness but soon reverted to our normal daily morning routine, which questions of why Bill passed out receding in the background of our daily life.

Two days later, January 14th, I rounded the corner from my bedroom to the kitchen and Bill wasn't in his chair in the sunroom. He wasn't on the floor either. I went downstairs to his bedroom and found Bill again unconscious on the floor of his bedroom. This time I couldn't rouse him. I had to call 911 and they took him to the emergency room. And thus began this year long change of life for both of us. 

I am so thankful that Bill is still here with me. Is he the same Bill before his two strokes? No, and he never will be the same Bill. But he's with me, knows who I am and is not in pain. That's all that counts now. Every day I have with him and can take care of him here at home is a blessing.

"That Prescription Is Refillable, It Will Be Mailed Within Five To Seven Days"

 

Bill in Germany U. S. Occupation Forces 1947

For about twenty-five years now I hear that recording after I phone in a prescription refill to the Veterans Administration. 

I have full Medicare coverage. I also have supplemental coverage with AARP (United Healthcare). My so called "free Medicare" (with supplemental) costs me $462.00 a month ($189 deducted monthly from my modest Social Security account - I had to start collecting early since I had no job at 62 - and $275 a month for my supplemental insurance. Thus I now pay $5,544 a year a year for medical coverage which doesn't include eye care, dental or hearing. The eye care is only covered by one eye examination a year, I pay for eye glasses which I just got at the discount B.J.'s for $417 (two pairs of eyeglasses - sunglasses one). My dental, which I need, I've paid thousands of dollars over the years out of pocket. For a short period of time when I had a full-time job in Philadelphia, I did have dental insurance which paid for part of my dental expenses, usually just the cleaning. Now days I pay everything out of pocket and as you know, if you go to the dentist it is VERY EXPENSIVE. I used to go to a gay dentist, not because he was gay (a coincidence) but because he was good and he was. But I stopped going to him because he took every Friday off to fly down to Miami Beach Florida to cavort with his gay friends at the former Versace home which is now a fou for restaurant ("fine dining"). It bugged me that I was contributing to that lavish and decadent lifestyle. Main reason I changed was because when I needed him for an emergency he wasn't available. I changed dentists and now I used another dentistry, which is also very good and expensive but at least I don't know where the money is going. But I digress. As usual, I start of a blog post with one thing in mind and my stream of consciousness takes me down a completely different path. Back to the subject at hand, my prescriptions.

Back when I was working at the bank for my main career (before hotel work at the end of my career), I had full medical coverage. Never used it once. Never. After I lost my job I figured I had better have some kind of coverage. I remembered the VA. When I joined the Army back in 1960 I was told I had "Free lifetime medial coverage.....if I needed it."  Well, I needed it then in 1994 when I was sans medical coverage. I didn't want to take a chance without medical coverage so I decided to swallow my pride and I made a visit to the VA to sign up. "Swallow my pride?", remember back then only poor, loser vets signed up for the VA. When I asked a good friend of mine if he was signing up, he said "Why should I? I HAVE a doctor and I have a job."  He was also of the entitled class who had everything handed to him basically his whole life. College education paid for by his family. Wife to take care of running his household which included everything from cooking his meals to running errands and paying the bills. One time we went out to dinner together and I casually asked him how much he was earning from his job and he said "I don't know." He said his wife "takes care of that." I was astounded. Didn't even know how much he made? Well, of course there came a time when he too lost his job, because he was of that age when corporation discard older workers even if they did work in Human Resources, which he did. He was in shock when he lost his job. Bereft of a plan, he broke down. Of course his wife took the reins again and studied their options and made a plan. Since he was eligible for VA benefits (he was drafted, God forbid he would ever join the Army voluntarily). So he swallowed his pride and applied at the local VA, the same VA when I had applied when I lost my job. He now receives his prescriptions through the VA and has no loss in status in his neighborhood. I was talking to him recently at the high cost of heart medication that both he and Bill take and he said "I get mine through the VA too."  My friend has come a long way, not ashamed to admit he gets his medications through the VA.I have to admit I was surprised hearing him say this but even he realizes the value of saving money because prescriptions can be and are expensive in this country.

There came a time during the Bush administration that the Republicans decided that they should save some more money but cutting the benefits to veterans like me, who weren't disabled and discontinue our VA benefits. You know, the Republicans of "we can never had too many tax cuts for our rich, corporate paymasters?" There was a predicable outcry from veterans organizations so the Republican controlled Congress decided to grandfather the benefits. Those veterans, like me, who were already receiving prescription drug benefits but new veterans would not. The Republicans instituted eight classes of veterans. Those who has no disabilities were classified at the lowest level, Class 8. Those veterans with disabilities received lower classifications. So if you were a blind, paralyzed, veterans missing limbs you would be classified as one, two or three. Bill is now classified as four, because of his blindness. He pays nothing for his medications. I am still classified as eight, and I pay $8 for a 30 day supply or $24 for a ninety day supply of medication, no matter what the medication. By the way, I changed my registration from a lifetime Republican to Democrat when the Bush administration and the Republicans in Congress tried to take away my promised Veterans benefits. That's when I realized the Republicans care nothing for the average man or woman nor do they honor promises. Remember when I joined one of the promises made was "Lifetime medical care.....if needed." Ironically after I lost my job at the bank and didn't have medical coverage, it was a good thing I signed up at the VA because shortly there after I needed two major surgeries. I also had two medical emergencies and needed medications. Thank God I had signed up at the VA. I wasn't too proud to sign up either, I earned those benefits. I put my life on the line for three years for that promise. The same as bill did for nine years of total service with both the Army and the Air Force when he was stationed with the occupation forces after World War II in Germany (Army)  and then Japan (Air Force). 

Bill had joined the Army when he left his home in Georgia. There was no promise of a paid college education for him either, his only choice to support himself when he left school was to join the service. That was also my choice. My Mother told me back in Nine Grade when it was time for me to choose a pre college course or other high school course upon entering high school. No comfortable golden path for us to enter adult hood. No fraternity, college campuses, beer parties, fun a frolic. Oh wait, there were beer parties and "fun and frolic", just with a bunch of other guys like us who came from more modest family circumstances (read "poor as shit.")

For many years I was resentful of my college bound friends whose families had the means to prepare them for a successful career in adulthood by paving the way for them by paying their college expenses. I guess I still have some of that resentment, especially when many of them took useless courses like "political science" (what the fuck is that?) or failed in college like my friend I spoke of earlier. He wasn't dumb, in fact he was and is very intelligent, more so than me. When we were in school together he rarely studied for tests but always got good grades, mostly A's and a few B's and never anything lower. And he did it with such easy. Maybe because his last name started with a "B" and he always sat in front of the class whereas I always sat in the back because my last name starts with a "T." I understand schools don't do that now, seat pupils alphabetically, because it causes psychological harm and it does. I can attest to that. And the fact that I was tall for my age I was always told to "stand in the back" whenever for group settings. Another blow to my fragile sense of self confidence especially me with a father he constantly mocked me and never gave me any reason for self pride. For my grades, mostly B's and some C's  and an occasional D, I worked for those grades. I'm still not the sharpest knife in the drawer but I work folks. And I work hard to make up for my lack of natural intelligence or brain matter. 

Some of us are just born smarter, what we do with our lives is our own choice. Others have to work at making our place in the world because little is handed to us. I think this is one reason why so many poor white men are resentful of minorities these days getting all the attention. They feel those minorities are getting free ride, which isn't true of course, why they have to work hard for anything they get. But again I digress into a political discourse. Been there, done that but it's not productive to rehash those old arguments again or as others say "beat that dead horse."

So I placed my order for a refill of my anti cholesterol medication last night and I am again reminded that at one time of my life I had the right decision. 

Note: there are more than a few times when I have made the wrong decision in my life but joining the Army wasn't one of them. One of the best decisions I ever made in my life. I learned more from my three years in the Army that I would ever have learned in eight years of college. 

Bill's Medical Update

 

Bill on his iPad checking the weather patterns

Being a full-time caregiver for a 93 year old man who has suffered two strokes is perhaps the hardest thing I've ever done in my life.

I didn't expect this to be easy. It is not. 

I've read a lot about the obstacles that caregivers face. I was prepared for that rough path. I knew my limitations and abilities but I thought I had prepared myself for what I would be living with 24/7 once I brought Bill home from the rehab hospital last February.

When Bill first came home he was little more than like a turtle on its back. No control over his bodily functions, confused and dejected. There were times when I seriously considered the OTHER option of not having him here at his home where he is most comfortable and well cared for. No matter how fancy or expensive the care facility, he would not received the level of care that I give him here at home. 

Over the months since he's been at home he has managed to get out of the "turtle on his back phase" and pretty much move around on his own. Thank God he hasn't fallen. He's very careful about that. When he first came home he used the walker all he time. He doesn't know although it is available next to his recliner chair in his bedroom.

We still have the bathroom issues but not as bad or as often as when he first came home. He does wear Depends all the time now, which we change daily, necessary to contain any accidents, which still happen occasionally. At first he complained bitterly about having to change his "panties" every day (as we call Depends) but now he realizes that an ounce of prevention is worth a pound of cure.  Like most of us I was squeamish about cleaning up "messes" but I soon got used to that, as I was told by a friend of mine who was his longtime partner's caregiver under similar circumstances. Still, if I can avoid cleaning up a "mess", I'm all for it. 

Bill is still weak, he sleeps fourteen to sixteen hours a day now. He is more easily confused and his cognitive abilities have declined precipitously. It's scary actually that he can't string together the simplest tasks. But as I always say, he knows who I am and he's not in pain. I'm not religious but I say THANK GOD!

One of the biggest problems is his eyesight. Because of his macular degeneration the only thing he can see is shadows, light and color. He has some peripheral vision but zero central vision. I can stand in front of him and he doesn't see me. When I'm out back in out back yard trying to recover our army worm damaged back lawn, he only sees my shadow. When I look at him directly into his eyes it's like looking into the yes of a blind person. He's looking at me but he can't see me and even sadder, I can't see him through his eyes. The eyes are the window to the soul, I can't see his soul.

I feel so bad  for Bill because he tries so hard to have some semblance of a normal life but because of his eyesight he doesn't. When he does attempt something he only makes it worse and then I have to go in and correct the problem he's created. What he did with our portable Hoover vacuum cleaner last week was unbelievable. He couldn't connect the attachments fo he taped them together. The only thing was that he had the attachments on backwards. Then he strung the electrical cord over the HVAC elements around our basement heater.  Why? What was THAT all about?  All he could do was say "I was trying to make it easier for you."  I told him that he could "make it easier for me" if he just left it alone. Then he gets upset and starts crying. 

Sometimes folks I just want to lie down and not wake up. I feel like I'm trapped but I can't let him out of my care. Now don't anyone give me suggestions as to what to do, I know best how much I am capable of and if and when the time comes that I can't control the situation anymore. The most important thing now is to keep Bill comfortable and the best way to do that is to keep him here at home with me and his surroundings. To put him in a facility would be a cruel end to his life and cause me sleepless nights wondering about him. No, he stays here. At least as long as he can get around on his own. 

I can help him deal with his frustration and depression over his lack of eyesight and no longer being able to work on his projects, which has been his life for the past ninety-two years. We have our daily rides, which he so enjoys and our routine, which even if he complains sometimes I think gives him comfort. 

His hospice nurse visits him once a week. Takes his blood pressure and asks him a series of questions. He blood pressure continues to be below the norm that the medical care workers were sending him to the emergency room. We couldn't live like that, that's why he's on home hospice care.

In a couple more months he will have been on home hospice care for a year. I don't know how long that continues. I guess I'll find out. 

Interestingly one of the hardest things to deal with now is his speech. I have a hard time understanding him. Sometimes I can but about half the time he slurs his words so heavily it's like he's speaking a foreign language. I think he talks like that when he gets tired. If I can understand a few words I can understand what he's talking about. And when I can understand his words, often he uses the wrong word. Then I have to try and translate what he's saying.

Then there are the cognitive issues. One thing he can use is checking the weather patterns on his iPad. But the thing with the iPad is that it is touch sensitive. He doesn't understand that so I'm continuously having to clear off a multiple range of website on his iPad so he can see the colors of the weather pattern. I try and tell him not to drag his fingers across his iPad but he doesn't understand. So this is something I have to do several times a day, clear out all the screens he's accidentally brought up with dragging his fingers so he can see his beloved weather patterns. 

I can list so many cognitive things we take for granted but that would be boring and perhaps perceived as being cruel, but her's another one. About half the time he gets out of the car he doesn't remember where the door latch is and he only succeeds in hitting the child lock mechanism and locking us in the car.  I never used that mechanism but you better believe I know how how to clear it after being locked in the car and trying to figure out how to get out. And you know what? He'll do it again.

Bill's waiting on my now to put him to bed. He goest o bed when darkness falls, which now is early. During the summer he, of course, went to bed about three hours later and had no trouble sleeping. Now that he's going to bed at 5:30 pm instead of 8:30 pm, he had trouble sleeping. We (his hospice nurse and doctor) had to double his sleeping pill dosage. 

Our routine at night is I give him his nighttime pills (he also has morning medications). He goes down to his basement bedroom by himself. I go down later to make sure his room space heater is on, because he's always cold because of the blood thinner medication he takes. I make sure his hearing aid is out and he's comfortable. Before I go to bed at night I check in on him at night to make sure his heater is still on, because sometimes it turns off by itself (safety feature I guess). 

This morning I had a scare. I woke up dizzy and nauseous. My occasionally reoccurring vertigo was visiting me. This is when I really worry, what would happen to Bill if I could no longer care for him? I don't even want to think about it. I managed to get get up and go downstairs to Bill's basement bedroom and get him ready for his every third day shower. He hates that but it is necessary. I don't know how I managed but I did and I was exhausted and had to lie down after I gave him his morning medication and prepared his oatmeal breakfast.  Who would take care of him like this if I wasn't around? No one, that's who. I'm not religious but I pray that I will be able to take care of Bill for every day he has remaining on this earth. 

Bill Rehab Update 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.

Visit To Bill Cancelled Today Because of COVID

 

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. 

Bill at Rehabilitation Hospital Surprise Visit

Last night I got a call from the evening nurse on duty that Bill had arrived at the hospital yesterday. 

The night nurse asked me for information about Bill. He also asked me to come in with Bill's health care directive and to sign certain forms for Bill's stay at the facility. I asked if I could visit and drop off Bill's hearing aid and dentures. I also wanted to bring Bill some clothes because, believe this or not, whoever transported him down to Dover, Delaware from Philadelphia, left two bags of Bill's personal belongings at the Philadelphia hospital where Bill was staying since last Thursday (January 14th).  Thank God I was able to retrieve them (including Bill's wallet with all his identification and credit card, which I, of course immediately reported as lost) by asking my Philadelphia Center City resident Don to pick them up.  He did and will mail Bill's things to me next week.

This morning I got a phone call from Bill wanting to know when I was going to see him.  He's still confused as to where he was last week. I told him I was on my way up to see him this morning. Bill is about an hour away from our home, an easy direct ride. I also brought with me Bill's favorite juices; apple cider, chocolate milk and peach juice.

I didn't expect to see Bill because of the COVID restrictions. Much to my surprise they let me in to see Bill. I cannot tell you how happy that made me. I was so afraid I would lose Bill and not have a chance to ever see him again. Now I could see him and at least have that closure. The video at the beginning of this blog was taken by a very nice aide who works at the rehab facility. I'm telling you folks, this was one of the absolutely best moments of my life.

This blog posting will be one of the shorter blog posts because I have to get to bed earlier than usual for me, because I'm going up to visit Bill again tomorrow and every day that he is at this facility. My visits not only calm him down but it is good for me. I felt like I was going to lose it last week, the only thing that kept me from going over the cliff was that I had to be here for Bill. 

I have been truly blessed being able to see Bill again and to be with him. 

Bill at me at at his rehab this morning

Bill Still In The Hospital, 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.

Bill Still In Hospital January 17th, 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.