Into The New Year!

 Good morning folks! 

This year I'm going to make a difference. It is clean out time.

Yesterday I attacked the hundreds of bubble wraps that I had accumulated over the years from packages I have received and donated them to Zach of "Boxes" in Milton. Two large black garbage bags. 

Zach was so appreciative as was I. I'll never use all that bubble wrap in whatever time I have left in this life. Time to get rid of all that and other packing materials. Zach is a young guy just starting his business in Milton, which is one of those UPS/FEDEX mailing places. We could use a facility like that nearby. The only other facilities like that are on Route One and 24, heavily trafficked areas here in the Rehoboth Beach area. I prefer to avoid those roads if possible. I also prefer to recycle material so this is a win-win.

My mailbox still isn't fixed. Remember that was the one the Amazon delivery driver demolished last Saturday when he was attempting to turnaround in my driveway. He said it "would be a few days" but as I suspected, NOTHING is being done. I will file a complaint against him on the Amazon website. I don't like to do that because I know it was an accident, even though I've told those drivers time and time again DO NOT TURN AROUND IN MY DRIVEWAY but they continue to do so. By the way, Amazon is not responsible for the damages, the driver is. The driver is supposed to have his own insurance but I highly doubt that. Prove me wrong driver. As I said, I file a complaint today but by next week I'll ask my handyman neighbor to help me fix the mailbox post and I'll buy a new mailbox.

I only have two more doctor's appointments left then I'm off free to coast for a few months. Just in time to avoid the snow storms which we've dodged so far this year here in southern coastal Delaware.

Bill had some more issues. He's hallucinating at night again. Also developed a heat rash in his crotch area and still has those open sores in his buttock cheeks. Sorry for the graphic details sharing, but this is Life of the Caregiver. I try to get Bill to clean those areas every morning during our daily change of Depends but he just gets too confused. I'm doing it now. Never in a million years did I think I would end my life as a nurse but here I am. I balance this all out by continuing to be grateful that I can keep Bill here at home where he is comfortable and that I can care for him. I can't imagine he would ever get this kind of care in an assisted living facility no matter how much they would charge. Just doesn't happen.

This time of year, before COVID and my caregiving, I would be preparing for my annual trip to Modernism Week in Palm Springs. This will be my fourth year of missing that trip. Last time Pat and I were there was in February of 2020. I seriously doubt I will ever again make a trip anywhere but one never knows. Right now I just want to get my mailbox fixed before another catastrophe hits.

Caregiving 2.0

 

My cousin Bud (left) with his mother and my other cousin Tom
(both my aunt and my cousin Tom are gone now)

Yesterday presented new challenges in my role of caregiving for Bill. 

Bill has had trouble swallowing for several years now. His esophagus is shot. 

During his last hospital stay they of course noticed that problem when they tried to feed him regular food. Bill cannot eat regular food. First he has no teeth. He stopped wearing his false teeth almost three years ago when he has his first strokes. He only wore the top ones anyway. 

The doctors advised me to either have an operation to replace is esophagus or have a feeding tube inserted into his stomach. Neither one of these are feasible options at Bill's age. He's closing in on one hundred years. First would the operations be successful and if they were successful, how long would it take him to recover from the operation? 

A feeding tube in his stomach? I don't think so. First of all Bill would lose one of his few pleasures in life, tasting his main course (morning and evening) of oatmeal which I puree with a banana and oat milk. Then there is the added caregiving tasks that would fall on me. Inserting the feeding tube, taking it out. I looked up the side effects. Diarrhea is one of them. No thank you. As it is I change his Depends daily now which usually heavy with his urine. By the way, the Depends work great for containing urine. Just so you know in case you're ever entering that lovely territory in your life's journey. Just saying.

So what I do is first grind up Bill's oatmeal to a powder then I add water and put it in the microwave to cook it. Out of the microwave I put more oat milk in it and a very ripe banana. Bill loves bananas. Then I puree the whole concoction. It's now liquid which Bill drinks.

Bill usually chokes when he drinks his oatmeal/banana puree but lately he's really been having problems. Struggling with gagging and sometimes throwing up what he just swallowed. This isn't a pretty sight folks. I can't stand the sounds so I almost always go out for my daily walk while Bill struggles to eat his oatmeal puree. 

Yesterday I was gone for about forty minutes taking a leisurely walk around Casa Tipton-Kelly and talking to Pat on FaceTime.  I was surprised when I came back in to hear Bill still coughing and gagging on his oatmeal. Oh how I wish I could arrange for him to have a new esophagus. I've often told him that he is being punished for leading such a healthy life. His body is just wearing out. He doesn't have cancer or diabetes or any other illness, just a body that is worn out. Just like his old Jeep that went for almost twenty-five years then a few more years after he gave it up to the garage where he used to get it repaired. 

Bill hasn't eaten meat in over forty years. He's not one of these self proclaimed vegetarians who broadcast their vegetarian. He just stopped eating meat. For many years he only ate peas. Yes, peas. But when his esophagus gave out he had to give up peas. Oh, he also ate a lot of candy but the past year or so he doesn't even eat candy. He does like sugar though. I have to put three heaping tablespoons of sugar on his twice daily serving of oatmeal/banana puree (I forgot to mention that earlier). He also liked ice cream but he stopped eating ice cream (only vanilla) about a year and a half ago. He does like Oreo Thin Lemon cookies which he eats all day. 

Because he doesn't eat grease laden food and meat is the reason I think he's lasted this long. He stopped smoking back in 1967, the same time I stopped smoking after seven years of smoking. I think Bill had smoked for about twenty years. 

So yesterday presented a big challenge. If I can't feed him his oatmeal every day, what to feed him? A banana smoothie? I do feed him two egg custards a day. This for his protein which has made a big difference in the edema in his lower legs. His legs are doing great. He walks every morning by making about twenty "laps" around our finished basement. His bedroom is off to the side in our basement. 

We tried talking it over last night but Bill is difficult to have a conversation with at the end of the day. He suffers from what is known as "Sundowners." Bill doesn't have dementia but he does wind down big time at the end of the day. It's almost fruitless to try and have a conversation with him late afternoon and early evening. Last night was one of those frustrating attempts at a discussion with him. After much frustration I finally gave up. 

This morning we had that conversation again and we both came to the conclusion that his mouth is too dry. Lately I've been having the same problem, a dry mouth. I sleep with my trap open thus when I wake up in the morning my mouth is like a parched desert. This has affected wearing my partial dentures. At my last visit to my dentist she notice that problem and she advised me to get this tablets to take before I go to bed. It helps prevent dry mouth. They work! Now I can wear my partials and enjoy tasting my food again. I think Bill is having the same problem but I can't give him those tablets. Too confusing for him to figure out how they stick to the roof of your mouth. So what he does instead is take one of his lemon cookies and put it under his tongue. So far that seems to help. 

I tell you folks, I wasn't made out to be a caregiver. But like my cousin Bud (same age as me) who took care of his invalid mother at home for the last few years of her life (she lived to be in her nineties too), when I asked him "How do you do it?" He said "You do what you have to do Ronnie!" He not only had to deal with his mother's early dementia but he had to change her colostomy bag every day. God, at least I don't have to do THAT. Thank God Bill can still go to the bathroom by himself. Haven't had a Number Two accident in his Depends for about a year now. Another friend of mine has to deal with his wife who has a myriad of problems. In addition to her problems she's in constant pain. Thank God Bill isn't in pain. Although it sounds painful when he choking while eating his food he says it's not. It's painful for me to hear him though. But that is me, old selfish me. Then here is my longtime friend who is in the final stages of his ALS. I can't even talk to him on FaceTime which I did for years when he was first diagnosed with ALS nine years ago. He can't move his legs at all, totally bedridden. Can't even talk now. Just gibberish. He has a full-time paid caregiver via Medicaid who comes in six days a week to take care of him at his home.

Maybe we're living too long folks. What do you think?

Number One Problem For Caregiving An Elderly Patient

 This morning was particularly bad for caregiving. It was Shower Day (every third day) which is always a challenge. Bill just doesn't want a shower but he needs one. Never again will I have him going to the hospital and they have to give me fungus medicine for parts of his body. Bill just is not good a personal hygiene. A terrible thing to say and a "deal breaker" for some of the readers of this blog but remember Bill and I don't sleep together. It wasn't until later years I noticed the body odor. He doesn't have that now because I insist on a shower every third day. That said, Shower Days are a still a challenge. Especially for me with my ever increasing arthritis which stiffens my body and decreases my flexibility. Hell, I even have trouble showering myself these days. I can't stand flamingo like on one leg while I was my other leg and foot. I have to lean on the shower wall to perform that task.

Eating is an increasing problem for Bill. This morning was particularly bad. His throat (esophagus) is shot. They wanted to replace it during his last hospital stay (I declined, he's too old for an operation like that) or feed him through a tube in his stomach. I declined the feeding tube to his stomach option too. I continue to puree his twice daily main meal of oatmeal, four tablespoons of sugar, oat milk and banana. After this morning I don't know how much longer we can hold out from those other options. Poor Bill, his body is just wearing out like his old Jeep Laredo. 

Bill's legs were doing well for the past few months but now the blisters are showing up again. He's been cutting back on his twice daily feeding of egg custard which supplies much needed protein for healing. That's how we got past his last major edema blister infections. It was such a relief for both of us not to have to bandage up his legs every morning when I dressed him. Oh yes, Bill still can't dress himself. Every now and then I give him the opportunity to try but he just can't. He get too confused. 

That brings us to the latest problem. One of his hearing aids doesn't work. Probably needs cleaned which I don't know how to do. I have to make an appointment at the hearing aid place. I called this morning but they're closed Fridays (of course they are). "Summer hours" was what the recording said. 

I sent the VA an e-mail asking them if Bill was still authorized to use this hearing aid facility. One has to have VA authorization or else we have to pay for that service ourselves. I already got caught on that once with an eye examination. Things are tight around here what with me not working at the hotel for the past two and a half years and prices going up on everything from lawn care (a major expense here) to grocery products. 

And this brings me to the subject of this blog. Know what the Number One Problem Of Caregiving An Elderly Patient is? It's addressing the patient's memory problem. I must have told Bill at least four times this morning that I have to call the hearing aid place to make an appointment to have his hearing aid checked. An hour later he asks me "What are you going to do?" I tell him again. About forty-five minutes laters he asks me again. Again I tell him that I have to get authorization from the VA and take his hearing aid to the hearing aid place and get it checked. It probably just needs cleaned. Guess what? He just asked me again "What are you going to do?"  Now I'm getting exasperated and tell him "I just told you FOUR times I have to have the hearing aid place checkout your hearing aid." Know what? He'll asked me at least two or three more times today and all through the weekend "What are you going to do?" 

And that folks is the Number One Problem For Caregiving An Elderly Patient: Memory loss.

And this caregiver has to be patient (no pun intended) when I explain again (and again, and again, and again, and again) that I have to take his hearing aid to the hearing aid place to be repaired. 

I was talking to Pat earlier about this situation. Pat will probably be my caregiver should I last that long (which I seriously doubt). If I find myself in that situation I'm checking out folks. Count on it folks. 

Balancing Act

 This morning I didn't want to get out of bed. 

Of course I don't have that luxury for the past two and a half years. I have to get up to get Bill up. 

I was up late last night watching more episodes of "Breaking Bad." 

I didn't get to bed until almost two AM. 

The evening, after I put Bill to bed is My Time. 

I usually update my online Scrabble games. I also have a late dinner. I don't have dinner while Bill is up because I like to have dinner with a TV show on or read something. I can't do that while Bill is up, I have to have one ear always open in case he begins coughing or to answer his questions. 

Sometimes I just like to be by myself. 

Before I took over the total driving for our household and Bill had his own vehicle, I had those times to myself when I drove my car. Not now. Whenever I get in my car Bill is with me. I understand he likes to get out, I would too if I was in his position. 

I used to have a nice clean car. Not now. As I have pointed out before Bill is like that Peanuts cartoon character, "Pigpen." Wherever he is, dirt follows.

Bill brings his cookies with him to my car . Crumbs all over. 

I'm tired folks. 

This morning on my regular once a week Sunday Zoom call with my friends Stuart, Lar and Pat I was miserable. Not a nice person. 

All is not horrible though. There are snippets during the day that I can do my thing. I get a lot of pleasure from my pond that I created last year. My fish (cheap feeder goldfish) are thriving in that pond. I even spotted new baby ("fry") fish! My plants are growing. I will go out to my pond after I finish this posting. 

I keep reminding myself that things could be worse, a lot worse. They aren't. There are caregivers out there (millions of them) who have to contend with raising children, keeping the hubby happy and taking care of BOTH parents in house. Thank God I don't have that. 

I think part of my problem is that I'm not in the best of health. I have a hard time walking because of my arthritis. In the morning it takes me about five minutes to be able to even stand up straight because of lower back pain and stiffness. I can hardly make it up the stairs from Bill's bedroom anymore. I can foresee the day when I can't make my legs go up those thirteen steps.

Right now as I type this blog posting I'm listening to another track of continuous "shop" music. That relaxes me. Also, the sun is streaming through my home office windows here to my right. All day yesterday was dreary, overcast and drizzly. We needed the rain but that kind of day doesn't do much for my mood. 

I sincerely believe that I will never be able to make a trip again with my friend Pat. I've seen the last of my trips. My next trip will be to the Great Beyond. In the meantime, I continue to perform this balancing act.

Caregiving 1.0

 Not a good day caregiving today here at CAsaTipton-Kelly folks.

This morning I woke up with stuffed sinuses again and a runny nose. No breaks though. Bill still needs to have someone get him up and prepare him for the day. Doesn't matter whether I'm sick or not, I forge on. 

This morning I was "greeted" by an angry Bill. He now wants me to reconnect the TV in his bedroom. I had it disconnected from our satellite TV about three years ago when he lost his sight. He rarely used the TV anyway. I was wasting the seven dollars a month that DIRECTV charges for the extra receiver. Now he wants to "watch" TV because he has to wait "so long" for me to come down to his bedroom and get him ready for the day.

One thing Bill is not is patient. One thing I am is very patient. I cannot count the times I've had to caution Bill to "be patient" when waiting for an appointment or any other event, even trash collection or daily mail delivery. Bill is not patient.

I don't want to hook up his TV again because I know he'll just screw up the remote control and I'll have to straighten that out every time he does it. 

HE CAN'T SEE THE REMOTE CONTROL.

These caregiving days I have to ration out my energy as my energy slowly seeps away. Yesterday I slept from 3:30 to quarter to seven for my daily afternoon nap. I was knocked out. Usually I only sleep for about an hour. This is my recharging time. 

Right now I'm waiting for the weekly visit from Bill's hospice nurse. I dare not tell him the time she said she would arrive because if she's later than her announced time he will get agitated and say "Where is she?"

Bill tries hard and for the most part is very accommodating but he is spoiled and I have no one to blame but myself. I put myself in this position. 

Initially I refused to activate his bedroom TV because I knew this would only add to my caregiving chores but I gave in as always and as he knew I would. The technician is coming tomorrow to hook his TV up to the DIRECTV satellite.  And here we go. Now every morning when I go down to his bedroom to get him ready for the day he'll say "The TV isn't working." Of course with Bill as it is with my friend Larry M., it's never them, it's the "TV isn't working."

Life could be worse. I could be living in Ukraine in a collapsed apartment building. Or even worse, I could be living in Florida.

Have a great day everyone!

Plugging Along

Yours truly supervising the digging of a new well at our old property in Pennsylvania

Now you ask "What is this picture than Ron has posted on his blog?" First, it has nothing to do with this blog posting. I decided to dig into my treasure chest of thousands of photos and post iconic ones from my past. You all have seen enough of my current reality of aged old gay men. These days sometimes I prefer to remember the glory days of my youth. Didn't seem like glory days back then but in retrospect, well you know. This particular photo was taken about 1994 at our Pennsylvania house when our well ran dry. Yes, our two gallons a minute well went dry and we had to dig a new well. This is yours truly butching it up on the well digging machine. By the way, the new well didn't get that much more water but we did have water again.

This morning I got Bill up as I have been doing for the past two years. These days the morning preparation is taking longer. For one thing I'm getting up later. I used to get up before seven o'clock but now my rise up and greet the sunshine day begins with me arising from a dead sleep sometime after eight am. Then, after I complete my morning ablutions (I have to get myself ready for the day too), I descend the thirteen steps to Bill's basement bedroom to the right at the end of the steps. 

Bill is usually awake, waiting for me. I get the pink plastic hospital basin that I had absconded with during one of my or Bill's hospital stays. Into his bathroom I turn on the hot water in the basin and suds up Dial soap in the basin full of hot water.

Into Bill's bedroom I go and give him a fresh wash cloth soaked in the hot water. He washes his bald head (no toupee these declining days) and face. I rinse out the cloth and help him up. I have to undress him and change his Depends. I give him a fresh washcloth and he washes his private parts.  I apply a medicated salve to his buttocks which have had an ugly rash. I rinse the wash cloth again and wash his legs. I soak his feet for a few minutes in the basin of Dial anti bacterial soap suds.  After I dry his feet off wash his right leg wound which is still leaking from the giant blister he got from his last hospital stay where he had a large blood clot in his right leg.

Then it is time to apply the dressing to his leg. 

Clean the wound

Apply a non-adherent pad

Apply a larger gauze pad over the non-adherent pad

Wrap gauze around the two pads

Wrap a expandable bandage over all

Apply a leg holding over all of the previous

Now comes for the hard part, getting his pants on. Bill is so weak these days that I have to put each pant leg on separately. I go through the hardship of putting pants on Bill so he can maintain some dignity in his day to day life. I hope I never have to go the route of my friend Lar who has ALS and spend the day in underwear or shorts. I know that would be more convenient but Bill's never worn shorts in his life when he was healthy and I'm not going to put him there at this time of his life. He's suffered and suffering enough indignities as it is. It took some time to convince him to wear Depends but he does now and is used to it. And that saves me a lot of work folks. A lot. There aren't as many accidents as there where when he first came home from the rehab facility a couple years ago but there is still the occasional accident. Depends work. So much better than taking someone's pants off when the poop is all down one leg. By the way, an interesting fact, the poop always goes down one leg of the pants. 

Now we're ready to go upstairs for Bill's morning medications and breakfast.

I have to crush Bill's pills. He can't swallow whole pills. I give him is crushed pills with a spoonful of applesauce.

I have to grind to a powder his oatmeal. After I make the oatmeal I put three tablespoons of sugar on it (Bill likes his oatmeal very sweet) and half and half, oat milk or egg nog. I put this concoction into my blender and liquify the oatmeal. Bill drinks his oatmeal breakfast.

In between all this I take my medication and prepare my breakfast of strawberries and cereal. 

Bill takes about twenty minutes to swallow his breakfast of oatmeal. He still has trouble swelling but, thank goodness, he not choking since I've been liquefying his oatmeal. 

Bill is very self conscious about his slurping sounds when he drinks his oatmeal so I usually tell him I'm going outside for my morning walk. Lately it's been too cold to go outside for a walk so I go to another room in the house while he "eats" his breakfast. I repeat this routine at five o'clock for his "dinner". For lunch he has a bottle of vanilla flavored Ensure. He used to snack on cookies, especially the shortbread cookies that I made for him but since he's come home from the hospital he's lost his appetite for cookies and any other snacks like caramel candies he used to have melt in his mouth.

Other than our one ride a day and if one of us has a doctors' appointment, Bill spends most of the rest of the day sleeping in his Archie Bunker Chair in our sunroom. Sometimes he listens to the local Fox propaganda radio station (the only one that comes in clear). Often when he go out for out daily ride he repeats those MAGA lies ("caravans of criminals are coming on our southern border!" or "The Biden Crime Family is ruining our country!") I have to remind him that what he's listening to are all lies and propaganda for the gullible Deplorables to send money to those grifters. He confused. He doesn't know what to believe because "he heard it on the radio." Just another challenge I have to face folks but we can't get any other talk radio stations. The other stations are all commercials or current style "music" and for an old guy like Bill that is torture to listen to.

Ah, for the days when our only challenge was digging a new well. I didn't realize how good I had it at that time.

 

Caregiving

 

Bill sitting under a shade tree (weeping cherry) waiting for the trash pickup so he can bring bak the empty trash can. He big event of the week.

Somedays my 24/7 caregiving responsibilities are quite manageable. Then there are days like yesterday and today that make me wonder "can I continue?" It sure would be nice to take a break but that is not to be.

The current challenge is an old one, Bill can't see. He has macular degeneration. He's legally blind. Yet he insists on doing things like his eyesight was perfect. All he succeeds in doing is making life harder for me and for him. But I can't seem to get through to him. He's stubborn. He always has been. 

Yesterday he somehow managed to break the wire to the headphone jack to his portable transistor radio.  It was a clean break. For the life of me I can't figure out how he did that but he was lost without his headphones and listening to his radio, the only station of which he can get in clear is the local Fox Propaganda Network. I've warned him if he listens too much to those lies propagated on that Treason Network his brain will turn to mush. He'll be one of those Far Right Zombies. Wouldn't that be nice to care for? But break the wire he did so I ordered a new one from Amazon. But it won't be here until next week. What? They have to get it from China?

Well, we couldn't wait that long so I took him down to the local Walmart. Yes, I fought that Friday night summertime August beach weekend traffic to go to the Rehoboth Beach Walmart to get new headphones for Bill. I had to get the kind with a jack because he can't figure out how to operation the wireless ones. They had one left, $4.97. It works, thank God.

For a backup I bought another set of cheap headphones at Walmart because he will break this one I just bought him and I'm leaving the order into Amazon. 

Bill's downstairs vacuum cleaning his bedroom now. He can't see of course what he's vacuum cleaning but he wants to be "doing something." I understand that. Earlier he was calling to me (which I was brushing my teeth) in desperation. I thought "What? Did he fall?" No, he was trying to plug in the light to check if there is a leak near the sewer pipe exit out our bathroom wall. He can't see of course but he's "checking" nonetheless. Now I'm not totally heartless, I know he wants to be "doing something" but all he's succeeding is doing now is making my life more difficult.

HE CAN'T SEE!

For some reason (his stubborness) he refuses to accept that fact. I can understand now why so many inmates of nursing homes spend most of their days drugged with their heads on their chests, sleeping the day away. If Bill was in a nursing home he would be one of the primary candidates for Drug Therapy. Even when I visited him at the rehab facility in Dover, they had him so drugged up that I couldn't understand him and he didn't even know who I was. I asked why they drugged him (which they denied by the way) and they told me "Mr. Kelly sometimes gets agitated." Agitated? That's Bill. If he doesn't get his way. 

I do have to admit he has changed somewhat in the year and a half since his strokes and he's home now. And this is where I want him so I can take care of him. I couldn't sleep at night knowing he's in some sterile, heartless "facility", rotting away. I just couldn't do that to him. But I do wish he would work with me a bit here at home while I am caring for him. I don't expect to ever be in the situation that he's in now but if I was and someone was caring for me, I know I would do everything possible to make my caregiver's life easier. But we're all different. Bill is always used to "doing something." 

I used to worry, "What if I die before Bill?" I don't worry about that anymore. One less worry. Whatever will be, will be. Things will sort themselves out. One day at a time folks, one day at a time.

Bill's New Radio

Since Bill lost his eyesight (macular degeneration) he can't occupy himself with his projects. In the fifty-eight years I've been with Bill he's always had a "project" he's worked on. That is no more. 

I try to keep him entertained during the day with our regular schedule of at least one ride a day. But he would like to hear the news and the weather without interfering with me watching TV. I've gotten different radios for him before but none of them had a headphone jack or were small enough for him to put in his pocket. After several false starts I finally found the perfect radio for him. One small problem, it's on a Fox radio station which, in between the news and weather you have the local right wing assholes propagating their bullshit. Sorry for the crude language but that's what they are. No wonder almost half the country is brainwashed into the Right Wing Lies. But I'm taking the risk that Bill won't be brainwashed by our local Alex Jones's and enjoy his radio to help him get through the day.

Bill's Daily Walk

Every morning, after I get Bill ready for his day, Bill takes his Daily Walk. 

Bill's Daily Walk consists of him making twenty loops around our finished basement room. 

This was done first to improve circulation in his lower legs where he has edema. When he first came home from rehab, his lower legs were so swollen, it was painful to look at them. Both legs oozed clear liquid and had open sores. Since Bill began his walks, the swelling is down considerably (still there) and the clear liquid oozing is completely gone. Occasionally he has an open sore but I dress them and they go away in about four or five days.

I am so proud of Bill. He has made so much progress since he came home from his two week stay at the rehab facility where he was sent after his near death at the ICU at Thomas Jefferson Hospital  in Philadelphia. 

When Bill first came home he didn't want to do anything. He couldn't do much. But little by little he has regained his strength to the point where he can pretty briskly walk every morning. At first he was getting mixed up how many loops he was making. I corrected that problem by giving him twenty quarters. After each loop he drops a quarter into a bowl until he runs out of quarters. 

Next week Bill will be officially discharged from home hospice care. But that doesn't mean Bill has completely recovered. He hasn't. He still needs me to help him dress, shower, eat and take his medications. He still gets confused and is still weak. But he has stabilized. He isn't getting worse. But he's only about 60% of the person he was before his strokes.

A couple months ago we took him off of Eliquis. He is still on his other medications. Taking him off of Eliquis means that he could possible have another stroke through a blood clot (his other strokes were the result of blood clots), but one of the Eliquis side affects was causing him dizziness. His risk of falling was greater this his risk of another blood clot. No really good choices here folks but we felt we took the one of least risk.

I am so thankful that Bill has stabilized. He still gets frustrated by his lack of eyesight but overall we have settled into a comfortable daily pattern of living. 

We are both blessed that our situation isn't much worse. We manage and for that we're thankful.

Reflections On An Old Man Sleeping In A Chair

 

Bill with his electric blanket staying warm

This morning I read a blog post by my longtime blogger friend "Spo" of "Spo-Reflections." 

His post this morning was about watching his father asleep in his chair. This week is "Spo's" turn (he and his brothers take turns caregiving for their 85 year old father) to watch after his father. See HERE for his blog posting. 

Reading his blog post is prompting me to write my own blog post about my situation of watching "An Old Man Sleeping In a Chair." That old man would be my partner and husband of fifty-seven years. 

Bill spends sixteen to eighteen hours a day in his chair, mostly sleeping. 

He has two recliners. One in his bedroom in which he sleeps in (see the photo of him covered with his full length electric blanket at the beginning of this post). His other recliner is in our sunroom where he spends most of his daylight hours.

Bill doesn't get undressed for bed. However I do undress him every morning to change his Depends and every third day is Shower Day, which he hates. This morning was Shower Day. 

Like Spo's father, Bill is always cold. ALWAYS. Even now that he is off the blood thinner Eliquis, he's still cold. For a while we had a space heater in his downstairs bedroom that we constantly had to adjust to keep his room somewhere between 80 and 90 degrees. That was very expensive last summer when we also had the air conditioning on. 

This year, thank goodness Bill has gotten used to the full length electric blanket which I tuck around his neck before I put him to bed at "night" which is usually around 6:30 PM. He gets up when I get up in the morning somewhere between 7 AM and 8 AM. 

Other than his breakfast of oatmeal in the morning, Ensure or a chocolate milk for lunch, and more oatmeal for dinner followed by a pudding (Bill has no teeth and has trouble swallowing), Bill sleeps most of the day. The one exception is when I take him for his daily ride. Sometimes I kill two birds with the "daily ride." Yesterday I visited my dermatologist which resulted in a quarter sized blister on my right foot to remove a stubborn skin abnormality (third time trying this). I am now limping around in pain from the blister. But that's another whole avenue that I'm not going to traverse right now. 

Bill is legally blind (macular degeneration). He is hard of hearing. His cognitive abilities are decreasing. Yesterday he got confused during his morning walk around the neighborhood cul de sac and I had to retrieve him from our next door neighbor's garage which Bill insisted was our house (oh the embarrassment). Sometimes Bill get the wrong driveway but this was the first time he insisted he was in the right garage (he wasn't). 

Bill in our neighbor's garage yesterday reluctant to leave because he thought it was our garage

Bill has always worked on "projects". Sometimes now, actually most of the time, get frustrated and dejected saying "I'm a worthless piece of shit! I'm good for nothing." I have to calm him down and reassure him is not "worthless" and after a lifetime of hard work it is now time for him to rest. But that is not in his nature.

Several months ago he asked for a small radio so he could listen to the news. I ordered a transistor radio from Amazon. Bill couldn't operate it because he can't see the dials. He didn't use it. Prior to this he was using his old radio in his basement workshop but I had to stop him from using it because he was going to break the tape player. That radio is a combination radio/tape player that you can't get anyone. He pushes any buttons and usually ended up using the "Pause" button and then the "Play" button which will eventually break the belt that runs the tape player, something he's done to another tape/radio player we have. I thought the transistor radio would work for him but no.

A few weeks ago I got the idea to order an Echo Dot for him, much like Spo's father has one. I thought that would work for him. Well, it "sort of" works. For one he was having trouble pronouncing "Alexa" to start the darn thing. He would say "A-LEX-E-A". Poor Echo Dot couldn't that explanation. Now I say "A-LEX-A" for him to start the contraption. 

Bill like to listen to the news. I say "Alexa, current news headlines." Guess what" ALEXA DEFAULTS TO THE LOCAL FOX NEWS STATION! 

WTF????????

I've tried  "NBC News" but no go. I can get CBS news but there is a lot of mumbling guests and fast talking women anchors that Bill can't understand. The Fox News is good on the headlines for about two minutes then it digresses in to it's usual treasonous propaganda format. I refuse to let what is left of Bill's brain after his two stroke, be brainwashed by a news station that is so unAmerican as Fox News whose sole format is to demonize anything Democrats even attempt to do and favor the Orange God King Traitor Criminal who was the former president. Ain't going to let that happen in this house folks. 

I've put music on but Bill can only take so much of his favorite German polka music and I can't listen to my MSNBC TV station because we're both in the space open kitchen/sun room/living room space. So most days Bill is nodding off in his chair in the sunroom or listening to my truth telling station of MSNBC and don't anyone dare to leave a "Both sides do it" comment. That bullshit and you know it. There is only one propaganda Putin loving station in this country and it's Fox News.

I'm contemplating looking for a podcast that Bill would like but I have to do more research in that field since I've never listened to a podcast in my life. Isn't a podcast the same as a radio station except that's it's coming through the Internet? Yeah, that's what I thought. Sounds good if you're on a commute in your car or you disdain TV as being beneath your time. I listen to TV and occasionally watch it like "Judge Judy" because of the facial expressions. I also give my TV my sole attention when watching a Netflix rental movie but the rest of the time I have TV on it's while I'm doing something else like eating lunch, playing online Scrabble on my computer, composing a blog like I'm doing now, writing in my journal. So I guess you can say the bulk of my TV watching is actually like a podcast but with pictures. I was always a comic book type of guy anyway. 

But I digress, back to "The Sleeping Man In A Chair." 

I see the way Bill spends most of his day. As I have said many times before I am thankful that Bill is at home and I can care for him rather than a minimum wage health care worker in a nursing facility. I couldn't sleep at night knowing Bill was in one of those warehouses waiting death. Better that I can care for him in the comfort of his own home. And he deserves it for all that he has done for the many years we have been together.  This is hard work folks but it is a labor of love. I will always be thankful that Bill was returned to me and his home after his two consecutive stroke last January of 2021. 

Bill's hospice nurse for her weekly visit. Last week she asked me if I was Bill's only "son." HA! Much to her shock and embarrassment I informed her that I was Bill's husband. I should have told her I was Bill's grandson.

Of course I've given plenty of thought to my situation should I reach Bill's age. I'm eighty now, not that far away from Spo's father's age of eighty-five. Like Spo, I probably won't have anybody to be my caregiver. Nor do I want to put someone in that position. Pat? He's my good friend and we enjoy our trips together but do I really want to do that to him? No I don't. I don't want to put anyone in that position of changing my Depends every day and showering me every third day, nor prepare my oatmeal and give me my pills and take me out for my daily ride. I'm not criticizing others for choosing that path. I also wouldn't choose the path my recently deceased brother choose, medical treatments for over three year and over five hundred medical appointments to lose his life from "the cure" (chemotherapy). John went through Hell for three years. Absolutely no quality of life. His choice though, not one I would choose. 

I have options should I reach that state of my life. Delaware is still debating the assisted suicide law and probably will be for the next twenty years, that's how squeamish most Americans are about having the choice to end their life in dignity and free of pain. Even if they do enact the law, which I doubt, there would be so many hurdles to jump over, that it wouldn't be worth the effort to even try. What we do for our aged and suffering animals we don't seem to be able to do for our fellow human beings who are suffering or who have decided they have lived long enough and want to check out.

I only have to find out how many pain killer pills to take to effect a successful end of life. Then there is the trip to Belgium, they offer a solution that doesn't require unreasonable obstacles for that Final Decision. Nothing violent for me like hanging or gun in the mouth. Too messy , traumatic or painful and if nothing else I am neat and organized about things in my life including the End. One thing is for sure, no nursing home for me. You won't see me drugged up and nodding my head off in the Final Exit Manor. I just hope that if and when that time comes I will still posses enough of my wits to make that decision. 

I've mentioned this subject (death) before and my friend Spo always responds with "You'll outlive us all!" I hope I do folks, I actually hope I do. But it won't be as an Old Man Sleeping In A Chair." 

Now if you'll excuse me it's time for my afternoon nap.

Not Helpful

 

Drainage pipe buried

This afternoon I got up from a deep afternoon nap to find out that Bill had dragged out all my camera equipment from the breakfront I have in our basement. "Just trying to help" Bill says. 

There he goes again with the "just trying to help" trope. 

All he did was make my life harder.

This makes me so angry. 

I hope when I never reach 93 years of age and cause this much trouble for anyone, let along my full time caregiver.

Because Bill was "just trying to help", my late afternoon schedule of today was delayed by half an hour while I tried to put all that camera equipment back in the breakfront sort of in the order I had all those pieces organized. 

I cannot remember all the times in our fifty-seven years together I've asked Bill:

LEAVE MY THINGS ALONE!

He will never learn. Never. 

Our very first fight was Bill "Just trying to help."

I'm the cook in our family. When cooking a meal I like to have all the preparation dishes cleaned before I sit down to eat. Bill wanted "to help" and insisted on cleaning the pots and pans AFTER WE ATE. 

I grew up eating meals with dirty pots and pans sitting in the kitchen sink in cold, gray, greasy water. My Mother never did the dishes. From about eight years old I did the family dishes. She let me, there was never a problem.

I grew up living in a chaotic, "Grand Central Station" house. People coming and going.

NO PRIVACY!

I'll get over this latest invasion of my privacy.

This latest attempt "just trying to help you" event.

But I have to tell you folks, I am exhausted. 

I managed the best I can caregiving for a ninety three-year old man who can't even dress or feed himself. 

For over fifty-years Bill and I had a good working arrangement living together. I ran the household. Paid the bills. Did the shopping and cooking. And for the past thirty-eight years the sole income earner in our household. Bill retired early at fifty-five years with a small settlement. Seven years with no income then collected early Social Security, a modest amount. Fortunately Bill is not a SPENDER like yours truly. God knows this family couldn't have two Spenders in this family. We would have been in much more modest living circumstances if Bill spent money like I did/do. 

However, since Bill's two strokes last year, his part of our arrangement - handyman work (which I am no good at), has been left up to me. 

This week alone I had a new microwave oven installed then taken out.

Yesterday I had a guy in to clean out my rainspout gutters which were clogged.

Also yesterday I had several guys in to install an underground drainage for the one rains-sprout that was leaking into our basement wall around the sewer pipe. Lovely. 

Today I had a service man in for our annual heater maintenance. 

I think I have something scheduled for tomorrow but right now I am too exhausted to look. I have to vent with this posting which some of my readers will no doubt find heartless. "How can you not have compassion for a ninety-three year old blind man who has lost his cognitive abilities?" 

I do folks, I do. It's just that some days are harder than others. And I'm not perfect.

But I'll tell you one things, I hope and pray that I never reach ninety-three years old, blind and totally dependent on someone else just to get through another days that I can't do what I love doing. If I'm lucky I'll just go to sleep one night and now wake up. That is my wish folks. 

I've had a long and interesting life. Full of ups and downs, mostly ups. 

Today wasn't a good day. 

Tomorrow will be better. Spring is coming. And I finally have that basement wall leak fixed.

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. 

Happy Halloween 2021

Me (guess which on) Halloween 2009 - Rehoboth Beach

 Yes, I'm still here folks! 

Now trick or treating this year for me this Halloween. 

The photo above was the last time I ventured out dressed to the gillies for Halloween. 

Oh how I used to look forward to Halloween. Not so much these days.  

Earlier our doorbell rang. Whoops! I forgot it was Halloween.  I checked my Ring video and sure enough, a young lady out there with a child. I have no idea who it was. I didn't answer the door. Bah humbug, that's me these days.

My caregiving continues. 

Bill is slowly getting weaker. He has a hard time talking and his cognitive abilities are slipping further but thank God he's not in pain and he knows who I am.

Since I last posted we've had several developments. Depressing at first but I've rationalized them and put myself in a "life goes on" mode. 

My annual labs and medical checkup at the VA revealed a "spot" on my left lung. My NP has recommended I get a CAT-SCAN. Also, my white blood cell count is down. I'm not sure what that means. I'm not HIV-Positive. 

I got my COVID booster shot last week. About eight hours after the booster shot I had some troubling after effects, feeling blah and shortness of breath. Actually very scary. I don't know how much was in my mind and how much was actual physical reaction. However, when I woke up next day all was back to normal.

In a couple of weeks I'll be eighty years old. And I ask myself "How in the hell did THAT happen?" 

Taking everything into consideration I still feel very fortunate I've reached this grand old age and the life I've had. A truly wonderful life for an "slightly" below average guy of intelligence and looks. Pretty darn good I say.

Have a happy Halloween everyone!

Caregiver Update

 

Bill with his hospice nurse last week

Regular followers of this blog have no doubt noticed that I haven't been posting on a regular basis. 

I've been blogging since 2005, right before we moved to Delaware. 

For long stretches I've blogged almost daily, sometimes even twice a day. 

These days, since I assumed full-time caregiving for Bill in February of this year, my blogging pattern hasn't been the same, to say the least. 

I've felt guilty about it, because I feel a responsibility to keep my regular blog followers up to date with my sometimes chaotic life. 

Why should I feel guilty? 

That's the way I was brought up folks. To feel guilt for anything that veers from the expected pattern of what others expect of my life. 

Granted I've come a long way from those days (Day One to late teens) feeling guilt just for existing and taking up space on this earth. This the result of a constant barrage of verbal and metal abuse by my father who didn't want children. 

He was a very selfish man. It wasn't until I left home at age eighteen and joined the Army that I began to experience a different view of the world and myself. That I actually had value as a human being and I didn't have to feel guilt for taking up space on this earth. 

Then I met Bill and for the past fifty-seven years he has been my biggest support in life. I have been one of the lucky human beings in having this loving and lasting relationship. Big movie star sex symbols like Marilyn Monroe haven't been as lucky as I have and continue to be. 

At this time of my life my waking hours and sometimes my resting hours are consumed with caregiving for Bill, my loving relationship of the past fifty-seven years. 

I do not regret that responsibility and am thankful that I have the opportunity to take care of my love at this time of his life. However, it is exhausting and does take up my life now. I am literally on call 24/7, ready for the latest emergency.

Bill is fading. He is getting weaker every day. His cognitive abilities are worsening. He is wearing Depends full-time now. This after a very messy accident last week.  Yes, Bill is now completing the full cycle of his life, starting out with diapers and ending his life in a diaper. He has accepted that fact, after initially resisting but after several "explosions" and then cleanup by me, he has acquiesced. He has also acquiesced into letting me have a respite from caregiving.

The hospice center can take him for a week every three months (ninety days) under their caregiver respite protocol. Initially Bill was totally against anyone but me taking care of him. Now he realizes that perhaps I can use a break. And I can folks. I am exhausted. 

I don't know when I'll take advantage of this "respite care" break but it's good to know that I have that option. I may never use it but I get some relief knowing that I could.

Every morning, when I treat Bill's edema on his lower legs, Bill tells me he tired of living. I can understand how he feels. He can't see, he's weak and getting weaker. He can't read. He can't do his projects. But he says he doesn't want to leave me. 

We're caught in a quandary folks. Sure, I know I'm to the first caregiver to be in this position. And my position could be a lot worse and for that I am thankful it is not. I keep reminding myself Bill knows who I am and he's not in pain. He can move around albeit shaking and slow but he can move. 

With all this said folks, while I'm in this situation I won't be posting as much as I did before Bill's two stroke in January. 

I am Bill's full-time caregiver now. I am a nurse/companion/live in EMT support.

With what time I do have off I have to engage in activities like playing online Scrabble, talking with my friends on Zoom and Facebook and reading to balance my life. 

For those of you who have been with me on this long journey since I began my blog in 2005, my    apologies.  Yes, I do still feel guilty.

Now I have some Scrabble games to update.

Have a great day everyone!

Caregiving For Bill Update

I probably shouldn't be writing about this but I will anyway because it is bothering me so much.

Since February 5th, when I picked up Bill from his two week stay at the rehabilitation center in Dover, I've been caregiving full-time for Bill. 

I've left my job at the hotel, which I loved.

I no longer make my quarterly trips to travel with Pat for the foreseeable future. Of course COVID has had a say in my travel plans but COVID is now receding as an impediment to travel. I won't be able to travel as long as I'm caregiving for Bill.

I help him dress. I help him shower. I cook for him. I clean up after him after his accidents (and he just had a really messy one a few days ago). 

I give him his pills twice daily. 

I take him for a ride at least once a day. 

I take care of maintaining our home including mowing the grass and performing small handyman chores that Bill used to do.

The one thing I have asked Bill to do is not to pee in the sink.  

I didn't realize he was peeing in the sink until he first came home from the rehab facility. At first he was using the guest bathroom on the first floor. After couple of days I noticed "that smell" (urinal) coming out of the guest bathroom. That's when I discovered Bill was peeing in the sink. I confronted him about it. He said, "What difference does it make? It all goes the same place."  Uh, actually not. When one pees in the porcelain toilet one is not peeing in a sink with a metal pipe. That's why the metal pipe of Bill's sink in his basement bathroom is all corroded. 

Bill, because of his failing eyesight couldn't do a stand up pee so we agreed he would pee in the hospital jug. He did that for about three months. Only problem there was he wasn't quite getting all his pee in the jug requiring me to clean up the tile floor. I talked to him about it and discovered he couldn't hold the jug the way it was supposed to be held because of his reset broken arm wouldn't permit it. Don't ask, but that's what he tells me.

He said he would use the toilet. He would sit, thus saving me the daily chores of wiping the tile floor three, four and sometimes five times a day and also emptying his urine from the jug.

Tonight, on a hunch, I opened the bathroom door to his bathroom because I had a suspicion he was using the sink again. He was.

Now, I don't want to hear from a blog reader about "He's just an old man and let him do this."  I say no. 

It's not just the cleanliness issue but its a respect issue. He tells me multiple times during the day how much he loves me and appreciates what I am doing for him. I told him tonight "You can tell me you love me over and over again but you have to back up your words with actions. Show me you love me by showing respect for me and pee in the toilet like any civilized person." 

He said he was sorry and asked me to forgive him. Yeah, right. Here is  the truth folks, Bill is lazy about his personal hygiene. He always has been. That's why he came home with fungus medicine from his two stays in the hospital. That's why I insist on washing him with Dial anti-bacterial soap every three days. He complains, and complains but for the first time in years he doesn't have body odor and is clean. 

Maybe the problem is me. From the time I was nine or ten years old I remember being concerned with the cleanliness of myself and place were I lived. Growing up in the Fifties one took a bath once a week. No shower, a bath and make sure you clean the ring around  the bathtub once you get out. I remember my father mocking me for wanting to at least wash my feet daily (me and my brothers didn't wear shoes in the summertime). Then in 1958 when he moved to a small ranch house with a shower, he mocked me for wanting to take a shower more than once a week.  Oh I had a "loving" father, he speciality was to mock me whenever he could. Not a whole lot (actually NONE) of encouragement from dear old dad. By the way, I never called him "Dad". 

I cleaned our apartment, I washed the dishes. I cleaned myself. That's just me. 

My biggest problem here is literally keeping the shit out of this house. And the pee out of the sink.

I probably should apologize that this blog post wasn't one of my uplifting, happy and joyous posts. One good thing about Bill's recovery is that the edema of his legs has settled and we're in a routine of appreciating each day we have together. Except for his bowel accident a few days ago, all has been going well even though he's getting weaker by the day. But he's happy and I was settling into a routine of caring for him. 

Today was a setback. So discouraging. I feel betrayed. Lied to. I've sacrificed so much to make Bill's final days comfortable and happy and he can't do this one little thing for me? It's not only about the cleanliness issue it's about respect. 

I'll go on. I love Bill and want him comfortable. Tomorrow he gets his near hearing aid. He lost his other one two months ago. He doesn't know what he did with it. Even though I told him not to touch his hearing aid when he had it on his side table to change the battery.  Again, he lied to me and tried to change the battery even though he can't see the battery. And you remember the projects?  He said he wouldn't do any more projects? He's still doing them. I gave up on that one, figuring it's best that he doesn't something besides sit all day and doze off. I try to keep and eye on him that he doesn't do too much damage during one of his projects.  

There, I've said it. I'm not trolling for sympathy or confirmation. I'm venting. As I have said many times in this blog, this is my therapy. I don't need to go to a therapist. This blog is my therapy. 

Caregiver

Bill has lunch on his last day at the hospital (he left most of the food)

Last month, after witnessing Bill slug through another ordeal in dealing with the VA for him health care I decided that I would be his official caregiver.  

This is a job I should have undertaken years earlier but I was either too lazy or just wanted to respect Bill for his independence. 

When Bill and I first met I was twenty-two years old and Bill thirty-five. Even though my three years in the Army (from age 18 to 21) matured me immensely, I was still in many ways a (have to be careful with what I say) "kid" and Bill was the "man."  After all he was almost old enough to be my father.  He was only five years younger than my Mother.

Over the years our roles have gradually changed.  

When I met Bill in 1964 he was making three times my income.  When we build our house in 1980 I was making twice what Bill was making.  I advised him to take early retirement (at 55 years of age) because I was making enough money for the both of us.  Of course you know how that worked out. Two years later Mellon Bank bought Girard Bank where I worked.  Four years later I lost my job.

Fortunately I got another job at another bank.  Then I began an odyssey of jobs from working at two more banks, as a consultant and finally as a hotel front desk clerk.  In between those jobs I had a summer job as a gardener at $8.65 an hour on a rich woman's estate.  But I digress.

Through all this adventure, I managed to keep us afloat even through the housing crises of 2006 where we almost went under with our house on the market for eleven months and a new house mortgage to pay for. 

A few years ago I noticed that Bill began slipping.  Hell, I began slipping too.  But you do what you have to do.  Survival is what life is all about.  That an a little love too, if you're lucky.  

Now, the past few years with having gone through several medical issues myself, I realize that the end is near.  We've been lucky because Bill has been relatively healthy during all these years.  In fact he's even VERY healthy.  But at 88 years old, body parts start to fail. I've noticed that fact with myself (you should see me get out of bed in the morning) and with my friends.

Two nights ago when I responded to the "tap, tap" on the floor beneath this chair in my home office at my computer, and I saw Bill naked and bloody lying postrate on the floor at the bottom of the stairs, I realized that our live if fundamentally changing.  

I took care of what had to be taken care of that night to get Bill immediate medical care. Now I have to deal with the Catch-22 bureaucracy of the VA in getting Bill's medications and medical bills paid for.  He doesn't have Medicare Part B, only Part A.  I have both Part A and Part B (at least until Trump and his Republican cohorts dismantle Medicare and privatize the program) so my journey through the Medical Treadmill is much easier.  Not so with Bill and his VA care.

Tomorrow we visit the local VA outpatient clinic.  I need prescriptions filled for Bill that I got from his recent stay at the hospital.  I know that the VA is going to tell me that I have to contact the Wilmington VAMC.  WhenI call the Wilmington VAMC then tell me they can fill any prescriptions until his "health care provider" (the doctor he sees at the Georgetown VA) sends them a "note."  Thus I'll get the runaround again tomorrow just like I did trying to get his upcoming cataract surgery eye drops medication (the eye doctor finally sent him the medication free of charge - sample bottles he had from salesmen).  

I apologize for boring you with all this minutiae but this is what my life will be in the future.  I am officially a Caregiver.

In many ways I am lucky though.  Bill is still about to get around.  His faculties are good. His heart is good both physically and emotionally. But he does tire easily.  He's very hard of hearing.  He has cataracts which resulting him him losing his license. He doesn't have much of an appetite. He sleeps a lot, which reminds me of my Mother's habits during the last years of her life.

When Bill had his episode this past Sunday night it just reminded me of how much I care for this man I've lived with for the past fifty-two years.  This man who has devoted his life to me. This man who has put up with me (I am NOT an easy person to live with) for the past half century. 

Even though the next years of my life with Bill will require more from me I can honestly say I feel privileged for my new role. 

This is what love is all about folks. 

Now if you'll excuse me, I'm tired.  I'm going to go to bed early tonight to get ready for the next battle tomorrow at the VA Outpatient Clinic.