Bones

I am writing this in this part of my blog as most people won't read it but I want to sort of track what I do with my health issue of osteoporosis. Perhaps my journey can help someone else make decisions.

I'm scheduled for a new scan to assess my bone density issue. Yesterday, I consulted with the endocrinologist, and by next Monday, I'll receive an updated reading. We explored several options for my future treatment.

Admittedly, I'm not thrilled about possibly needing medication for osteoporosis. Since my bone-building years are behind me, I require assistance to increase bone density.

As a child, my nutrition was excellent, supporting bone development. In contrast, my college years were marked by poor nutrition—typical dorm food—lacking in essential vitamins, despite rigorous training.

Being petite, female, and white also places me at a higher risk for osteoporosis, although I've never experienced a fracture.

We discussed a newer medication called Evenity, designed to enhance bone density over a year. Following that, I would have to transition to a biannual Prolia injection, provided I tolerate these treatments well. [Crossed fingers]

Reflecting on my age, I acknowledge the inevitable changes that come with it. Our bodies, including organs and joints, deteriorate over time. We turn to doctors for improvement, yet they cannot turn back the clock or always decipher how to heal us. The human body is complex.

We chase youth, health, and the reversal of aging's toll on our bodies, despite knowing there's no fountain of youth.

The advancements in modern medicine are astounding. Joint replacements, organ transplants, and treatments unimaginable a decade ago are now realities.

I'm going with this:

If you want some fun, look up 'curing osteoporosis' on the internet. You will get some really wild suggestions. I know, I looked. 

I've had acquaintances send me podcasts and TikTok links [sorry didn't open them] on how to Cure osteoporosis also. 

I'm not dying. I have a condition that is not painful, until of course I get a compression fracture or bust a hip or something. 

I want to continue my way of living, hiking, and adventuring as long as my body will allow it. 

I want a PITY Party.

 

So, after a short vacation for some free time which...WAS awesome and wonderful...and a weekend visit from a granddaughter, I was left with the Sunday afternoon blues.

I'd had a great weekend with my son, his wife, and Rory. Someone else saw to the meals and checked in with hubby. The animals had enough hay and water to cover them for the time I was gone.

For the 36 hours I was in Kenosha, I didn't worry about making sure someone took their pills on time, if he got to the bathroom on time, or what did I have to make for breakfast, lunch, supper. I had back up for that.

Then, this past weekend I'd been treated to a girls' day out by my granddaughter, good sensible conversations about books, dragons, life, and all that normal stuff.

These were things that made me feel alive and normal. I had human interaction and lots of laughter. I remembered what life was like 8 years ago. Before one medical issue after another happened.

I would be lying if I said that at this point I am pleased about always being the person in charge.

Granted, my husband is not difficult and he is rather pleasant. The man who used to fix things, get things done, and be fun and engaging is gone.

In his place is a man child of sorts. There are very few things he will or can do for himself.

Now he sits at the table and stares out the window. Sometimes he has something to say but most of the time he struggles with words so it is easier to be silent.

He refuses to wear his hearing aids, so conversations can be pretty bizarre especially when his aphasia perks up.

"Bagels are trying to get in the scrins with those flies. Better shut the door."

Translation: Bugs and flies are on the screens, shut window.

I feel guilty for being grumpy and irritable when he spills on himself and the floor.

He asks me several times a day what we are having for lunch or supper. I tell him over and over. Sometimes I just purse my lips and tell him to think about it.

And then I feel like crap because he can't recall what he was told.

On other subjects he seems sharp as a tack. 

It makes day to day communication otherworldly.

The interesting part of all of this is...

Maybe the time off and fun visits make me realize what I am missing. 

I am jealous of those who have freedom to travel and the freedom to have friendships and a social life. I'm tired of turning down all the invites to friend's houses for evening campfires and get togethers...and other events. It is tiring to explain over and over why I can't just pick up and go.

Then the invites stop. And there it is. The thing in my life. Really, some don't want to hear my struggles and I don't blame them. So I don't talk about it. 

I know he is better off here at home than anywhere else. Yet once again I feel the discomfort of wishing things were not this way. Some days I'm just so tired of being the responsible adult.

A day in his life, what Quality?

My once very vibrant, contentious, fun, frustrating, funny, and bull headed husband is slowly fading away from me.

This year though, his mood is better. It all has to do with the constant photos we receive from my oldest son of our newest little grand daughter. Some mornings, Rich taps my phone to watch 20 second videos of Rory just doing normal baby things. He loves to hear her voice and her cooing as well as her antics.

He had another TIA which concerned the doctors who wanted to order a battery of tests and a slew of medications.

We reminded them that he is in Palliative Care. He wants no new tests. He wants only to be left alone by the medical people and as remain comfortable as he can be.

He commented that he'd be happy enough if he just died in his sleep.

The attending ED doctor looked at him and then me and said, "But maybe you don't really mean that. I mean, think of your wife. This may be painful for her to hear."

I pipped up and replied, "He has no quality of life doc, this is something we have discussed and thought about. No one is prepared for their life to end. But then again, he doesn't have to fight through all of his illnesses and put on a brave face for me. I am with him 24 hrs a day and see his continuous struggles. You don't. Believe me, it is okay and not painful."

A nurse came in and commented that he had gained weight and perhaps he should look into losing some weight and eating healthier... and maybe doing some exercise???

I walked out with the nurse and asked if she'd looked at his chart. I gave her the stink eye and said her comment was appreciated, but totally uncalled for. I'm sure she meant well on her 'high' horse. But I kindly took her off that and dumped her on the ground as easily as possible. Her comments, I told her would resonate better with a patient who was young and in good health, but perhaps not someone in end stage COPD.

As good as doctors, nurses, and all medical staff are, some have never lived around the clock with a person who has lost their previous lives. 

In fact not many people really REALLY know what a spouse/sister/Aunt/daughter/son Caregiver really go through at all.

It is something so many do silently and without much complaint. 

~~~~~~

My husband's day starts when he gets up at whatever time. It can be 5 am or 9 am, there is no rhyme or reason.

He has 2.5 cups of coffee...exactly. He can make his own instant oatmeal some days, some days not. I have to carry his coffee for him or he spills it because his hands shake so badly. His coffee sits on an old hand towel to catch what he spills as he sips it.
Sometimes I have to feed him. Again, the shakes. And oh the embarrassment and self loathing that follows that!

I fill bird feeders, hummingbird feeders and arrange them each morning so he can watch out the window and try to tell me which birds he sees. He has aphasia so the bird names often come out oddly, but I know what he is trying to say. He's had word finding difficulty since 2017. I'm used to it.

He can be delightful and funny still. He also gets quiet and it seems that I lose him to another world where he is shut in his mind. 

In two hours after breakfast on the dot, he is ready for the morning nap. That lasts until noon. He gives me his order for lunch. I make it. We eat together and chat about whatever. I put Lego minifigs on the table and play with them. He laughs.

At 1pm sharp, it is time for a nap unless it is dry enough for me to bring him the riding mower. If he can mow, he is happy. I help him onto the mower and situate his oxygen. He takes off wearing his cowboy hat and shades. 

I think it makes him feel free and worthy to do the big yard. He is mobile and he is good at it. Sometimes he bumps into things. 

When he comes up to the porch on the mower, his smile is huge. I help him off and it is time for a drink of water and a ... nap.

On days he can't mow because of the weather, he sits at the table and watches the birds. When that bores him he lays down again.

His schedule revolves around routine. After the 1pm nap which is short, he watches mysteries on the TV....until it is nap time again.

By then we are close to supper time and he asks me what we are having for supper. [He can never recall what I tell him about supper or other things] 

*I forgot* is his new mantra. And it is true. He talked and listened at length about things his daughter was telling him on the phone on Father's Day. His end of the conversation was ... "Oh" "Yes" "Hmmm"

When I asked about what they discussed over our supper, he looked up and shrugged. 

"I can't remember."

Long conversations on the phone are good. He likes to listen. But he cannot recall what the topics were. He can rarely recall what I planned for a meal after I've told him. Some days he can't navigate the TV. 

He has developed a rather alarming cough which is part of his COPD. He has more and more trouble breathing and his intercostal muscles surrounding his ribs hurt from coughing. If he goes without O2, when waking up and changing from his CPAP to his concentrator, his O2 levels drop below 80%.

I feel guilty, because some days I wish that his suffering would end. He once said that if he was an old hound dog, his owners would never let him suffer this way.

He wonders often why humans have to suffer when pets didn't.

What next?

It's no secret that COPD is a taker and a taker. Pictured is hubby taking his afternoon Nebulizer. He'd be angry at me for grabbing a shot through the stairs, but it is what it is.

COPD is pretty unforgiving. It takes everything from a person  and if there are other health issues, it makes it all the harder. [Generally there are always co-health issues to go along with severe COPD]

Most mornings he gets up and comes in the kitchen for coffee. I take his 02 readings right away. When he takes his CPAP off and gets dressed his 02 drops to the low 80's. Anything below 92% is dangerous. He has a hard head and won't hook himself up to his concentrator.

Below 92%, your brain starts to malfunction, as well as all of your organs. 

Then...we found a lump in his neck.

They did an ultrasound and then it was recommended that a needle biopsy be done. That needle biopsy turned up 'not enough' cells and samples to make a diagnosis.

Rich was against the ultra sound, I convinced him to do it. He was against the biopsy and he was not happy but did it.

Now the lump has swelled. It causes him no pain or difficulty in swallowing or breathing. But he is not a happy camper. He told me if we'd just left the d...ned thing alone he'd have been happy. 

The doctors recommend a removal of the 'nodule' and then send it for testing and he emphatically said....

NO.

I can't blame him, he has gone through so much in the past 8 years that it seems cruel to put him through anything more. 

In fact he is becoming more at peace with his future. Even as far as to make sure that I have what I need when he is no longer here. Odd to be making plans like that, but we are at that point. We actually set things up 12 years ago. That was 4 years before he was diagnosed with throat cancer.

The nodule could be benign but he doesn't even want to address that. 

So we meet each day as normally as we can and I take care of him and everything on the farm. Once he is done with the farm we will move off from it. Oh, I'd love to stay here in these beautiful hills forever but that won't be practical at all.

The fact is, he wants to stay here until he dies and then he wishes me to move on to live in a place where I don't have so much work to do. Our place was remodeled and it IS a solid low maintenance home. However, the remote location will make things like getting groceries, medical care, and help much harder as I age.

We've decided that I should move to an area where I have access to public transit and the ability to have groceries delivered if I needed that done. Location, location, location. Since I [we] have no relatives living in this area, I will move closer to my son. 

One of my new and younger neighbors has voiced her desire for me to stay. She said she would watch over me. In truth, I am not sure I'd want her to. She is now learning to deal with her own parents who are aging. She can't care for her parents, work full time, and raise her children...and then take on someone like me.

The plain truth of it all is that I am tired of being the adult all of the time. I once asked his daughter to give me relief. Her answer was no because she had to make sure her husband had his lunch packed for him daily.

Her children come to visit more often than she does. My grand daughter asked me last weekend if I didn't think it would be smart to leave the farm after Grandpa was gone. I would be too alone out here.

My son had voiced the very same thing. So had my other grand daughter who had come to visit a few weeks ago. 

What next? We actually have set a plan in motion. Well, at least an option.

Hubby and I agree, when he is gone, I will move back to the town where my oldest son lives. 

What Is Anticipatory Grief?

 Anticipatory Grief is something that can begin before the person you know has died. 

I realize now that the last nine years of my life I've assumed the role of a Caregiver. The first diagnosis of Stage IV throat cancer changed our lives. [Whoever has had cancer in a loved one or family member will know that the C word changes things forever] 

The event started a cascade of other health events that compounded on Rich's COPD. 

Now we live day to day with a routine of me doing the simple things for my husband that he cannot do. My routine has changed and his care is at the forefront of each of my days. 

At first I was frustrated and a bit angry because I never thought that I'd have to learn to do all the 'man' stuff that was always done by him. Over the years, I've taken on all of the duties around our small farm and it can be very taxing. 

Finally I've come to the realization nine years later, that I've gone nowhere and done nothing but give give and give more. Yes, it is common to feel that way as a Giver. It is also common for a Giver to feel guilty at those very same thoughts.

There are days I look outside and see myself on a camping trip I've longed for, or perhaps a Waterfalling trip...exploring the parks that my state has to offer. Wandering along wooded paths and exploring without a time clock. Reality bites and I am doing my next Giver thing. 

I'm luckier than some Givers. I can still get out for daily walks and sometimes fit in a nice hike at a park close by. 

But I daily grieve for the person I used to be married to. The energetic and sometimes pain in the butt guy. We did a lot of weekend traveling together to see other friends. We camped with our mules and rode parks. 

He fixed tires, maintained the mowers, tractors, skid steer, and did all the farm jobs. He was a force to be reckoned with.

Givers learn things. I learned to drive the skid steer, arrange for maintenance on them, fix fences and reroute them when the deer take them down or trees fall on them. I used to really go after it with gusto. But I'm growing tired of all of my extra duties.

The point is. Daily some small part of me grieves for the person I used to be married to. The one that gave out hugs all of the time. The one who was independent and vibrant. Not the person who sits quietly and stares out the window. I ask him, "What are you thinking?"  He blinks and finally looks at me and replies, "Don't know. Nothing."

I like to have a plan. I'm always thinking about the 'what if' scenario. Apparently, that is not the healthiest thing to do. However, that is the way my brain functions. 

IF this happens, what is my next step? 

Each day, I see a little less of the person I married. He moves slowly away as if he is fading. He is fading. 

Each day I grieve a bit more for the person I am losing. I know I am putting forth my best efforts but I can't change what is happening inside his body and brain. Some days I am angry that this happened and think IT is NOT fair! And then there is the guilt for thinking that terrible thought.

There is no cure for his diseases but a release of pain and suffering when the time does come.

And then I will grieve again. Not just for him, but for me who after years is suddenly out of a job. 

What will I do?

Will I feel whole or half?

This is a Long Journey

In 2015 Rich went through lengthly cancer treatment for throat cancer, Stage IV. 

In 2017 Rich had a stroke, in 2018 he suffered from a PE. A double Pulmonary Emboli. Each of these medical instances could have ended his life.
He also has COPD. According to the medical notes on file, it is Stage 4.

The doctors think he is amazing as he has really beaten the medical odds. 
He also has MDD which is treatment resistant. [Major Depressive Disorder]

Rich can speak fairly well and sometimes he does lose what he wanted to say or the words evade him. We've been a close couple for years so generally I understand what he wants to say, but let him work it out unless he is too frustrated. Then I help him. His memory of things in the recent days evade him too, as well as those memories from just a few years ago.

These things are not really important. NOT to me. What is important to me is quality time together.

Our meeting with Palliative Care this week was very emotional for him. He knows that his COPD is an end game for him and he has always been rather Cavalier about it. Thursday he was not.  His breathing is a struggle for him and it limits his activity.
His MDD is a huge black wall that keeps him from finding any joy in his life -- this he tells his doctor.

Finally and tearfully, he admitted that he'd just like to go to sleep and be dead. He is not suicidal but he sees no point in continuing in a life where he loses memories, struggles to breath, and has no motivation for life. 

Can you imagine how awkward it feels for him when he ... the tough guy... breaks down and cries while on a Video Appointment with his provider? His Palliative Team sat quietly and let Rich gather himself. Of course she asked if there was any thoughts of suicide and he said emphatically NO. 

He is tired. Tired of not being the productive go get 'em guy that used to whip out the chain saw and cut up fallen trees. He is no longer that dude that had never ending strength and energy. He is tired of being tired. Tired of his words not forming and lost thoughts.

We discussed second opinions for his MDD and other more radical treatment. He just asked 'Why?'

This is the time of year that his MDD really kicks in. The days are shorter. The dark is longer, even with a SAD light, his overall mood is darker.

His Palliative Care doctor is adding a low dose of morphine twice a day to his meds. 

We are marching towards the end in a steady fashion. 

While visiting his Community Care Primary Doctor last week, he mentioned the very same thing. Wishing he could just die.

His PCP said she understood but she felt he shouldn't say it in front of his family as it would cause them pain.

I looked at her and sort of shrugged. She is a doctor that works in a clinic and doesn't live with a patient like this day to day. 

His comment is not painful to me at all. It is the truth. I listened to his mother say the same thing while she slowly died from Stage IV kidney disease.

Just let me go. 

In Palliative Care, the doctors want to make him comfortable as his disease progresses. His Palliative Doctor and others would like to see him try some of the newer treatment for his depression. Those treatments would require 3 visits per week at the average of up to 6 hrs per visit at the VA. That would create 12 hour days for us with a 90 mile drive each day. He said NO.

Regular doctors want to 'fix' things, it is in their nature. His PCP was willing to get referrals for all sorts of tests. Rich said no. He didn't care if his heart was giving out. He lifted his bracelet and reminded her that he had a standing DNR order in case of heart failure.

So we wait until next week and see how the morphine goes.

And of course, more Lego building. He seems really fascinated by it and it is an activity, oddly enough, that makes him laugh when I screw up. Last night he even put a few small pieces together.
To me? 

Priceless.

Moral Injury or Tortured Soul?

Our visit with the Palliative Care Doctor was in my mind a huge success. Dr. Eskola and the Social Worker, Sarah were very receptive and understanding.

In the past 10 years there is a new thought process...well not new to any Combat Veteran [they know this, yet DO not know this] a newer exploration of PTSD combined with what is called Moral Injury. You can read about it here at Moral Injury-the VA's extensive write up.

The DAV also has an explanation part of what I will copy and paste below.

Symptoms:

Persistent Negative Emotions – Veterans who experience moral injury can be overwhelmed by negative feelings. Feelings of guilt, shame, remorse from past acts that violated their code of morals. Often times they feel disinterest in previously enjoyable activities, or genuinely find it hard to feel happy. A veteran may feel like they can’t trust anyone, because they have seen how dangerous the world is or feel emotionally numb.

Reliving the event – Awake or asleep, a trigger can cause painful memories to surface and make the sufferer feel as though they are experiencing the event demoralizing event all over again.

Avoidance – Veterans will often avoid situations that remind them of the event. For example, many veterans avoid crowded places, because they learned overseas that crowds were targets and being in a crowd made you a target. Some veterans will even avoid talking about the incident that affects them.

Trust Issues – Veterans feel like they have lost the ability to trust others and question whether every decision is right. Often veterans will withdraw themselves from society as if they feel like they do not fit in with society’s fabric.

Drug/Alcohol Abuse – Some veterans may turn to drugs and alcohol when faced with moral issues and dilemmas that linger in their past. They see the drugs and alcohol as a way out from facing the moral guilt built from war or past trauma.

Aside from the health issues my husband has had, he has Chronic life long PTSD. I've written about his severe depression before so I won't go over that again. 

The Social Worker asked if Rich understood what Moral Injury was and he looked confused. She explained it to him and he still looked a bit confused.

I asked if I could help explain it. Sarah game me the nod.

I reached over and asked Rich where it hurt. 

Everywhere, I hurt all of the time. It hurts to think, to breath, to exist. [Not an exact quote because he has aphasia and word finding difficulties]

I touch his chest, his arm, the side of his head and ask him if it hurts so bad internally that it is unbearable.

Yes, it is unbearable inside my head inside my ... his hand flutters to motion to his chest and body.

Me: What if that pain is because it hurts all of the time because of what you did while you were in Vietnam? You once told me that what you were made to do when against everything you were taught about being a good person? Does that sound like the pain you are having?

He nods and tears begin to flow. He gasps and sighs and drops his head. He mumbles that he is not worthy.

Sarah nods at me and we continue. 

She asks if he will see a Chaplain, if he is open to trying something different to ease his emotional and physical pain.

He is not sure. However, I ask him what does he have to lose? Why not?

He asks Dr. Eskola if he can't just get pain meds to make it go away?

She comforts him by saying her team will address all of his physical and medical issues as well as help him all they can with his mental health issues. She has seen his extremely long medical record regarding the past struggles all the way back to his first VA visit.

By now he is an emotional train wreck. My heart aches and I feel the pain coming off from him in waves. Seriously...I do. This guy and I have been 'soulmates' for 26 years. 

Our time is up and we make a second appointment to come back. We get in the car and he says he feels tired. I ask him to try this thing, to try and ease some of his guilt. 

He has a hard time wrapping his mind around it.

It sounds like Hocus Pocus and he has lived with this pain so long that it is a part of who he is. 

He owns his guilt. If he were to let go of it, would it make what he did okay? Would that make him a different person?

What we know is that we cannot cure his medical illnesses. That is why we turned to Palliative Care. It is for those with diseases that cannot be cured. However, if one can be more comfortable as they head towards the end of their life, why can't they also set things right with the world?

I ask Why Not?

Why not calm the tortured soul within to be able to find a bit of peace?

Rich received his D.N.R. bracelet. The permanent one will come soon in the mail. This bracelet is an advanced directive signed by his doctor that will notify EMT/Paramedics and ER doctors and hospital staff that he has a standing Do Not Resuscitate order. If the heart stops, let it stop.