Thanks for asking

"Things happen for a reason."

"I know what you are going through."

"How are you doing?" Accompanied with a sigh of sorrow and a look of extreme pity.

"You poor thing." 

People who have not been 'in my situation' don't really 'know how it feels until they themselves go through the experience'.

There are many folks who have gone through this experience. I'm going through stages of grieving for my husband while he is still alive. The grieving started years ago. In a blink of an eye, I went from being a partner in a relationship and being free to do my own thing, to a Caregiver who had to pick up all the responsibilities we used to share. 

For 10 years now, I've watched my husband diminish one small bit at a time. In 2015 I started this blog to track our journey through Stage IV throat cancer. His prognosis was pretty dim at that time. The cancer treatment process did quite a bit of damage physically and mentally. He already had mental health issues previously. But the chemo fog and the weeks of radiation [along with a TIA & anaphylactic reaction to chemo] lessened his quality of life.

The doctors were amazed at his recovery though and told him so. The stroke that followed a year later should have done him in. Twice the neurosurgeon had to go into his brain to remove blood clots. The neurosurgeon told me afterwards that he wasn't sure how much damage had been done.

Four days later, he was home. I quit work to care for him and take him to therapy 3 times a week to learn to speak again and work on his thought process that had been messed up. Again, everyone was amazed that he came through this event so well. 

Granted, he could still walk, talk [sometimes backwards -- aphasia] and help a bit with chores. But his interest in most everything stopped. He couldn't comprehend reading or browsing the internet to read about hunting, hound dogs, and other fun things he used to do. TV programs have to be simple stories, nothing complicated. 

His anger issues from his PTSD were diminished greatly. The VA appointed me as his Fiduciary [think POA of finances]. We had an inspection from the Fiduciary folks at the house and we went through our statements and finances. 

I sold our cattle and our breeding mares along with a few mules that were to be 'in training'. Rich was still able to mow the yard and run the skid steer. He even was able to work his chainsaw a bit in order to help clean up messes.

In another 14 months he woke up one morning complaining of his chest hurting along with extreme and sudden pain just before Christmas.

Once more I followed him from one hospital to another. He was once again put in ICU and the attending doctor was once more very grim. He'd had a Pulmonary Emboli. Blood clots in both lungs preventing him from breathing. The doctors at this hospital said his chances of surviving were minimal. However, he did survive. He was in so much pain afterwards. His capacity for breathing while doing anything had been taken away.

At a follow up visit to his Primary Care Physician, he complained about his shortness of breath and the pain. The VA doctor looked at him and told him not to complain, there were others worse off than him.

OH yes, she did!

I immediately requested a transfer to Palliative Care. And there we found the best care ever for someone who has had so many medical 'events'. He could leave Palliative Care at any time. They were concerned for the whole person. Not just the current medical event. His pain was addressed, his mental health was addressed, his comfort was addressed as was mine. He had a Social worker and I received a Social Worker who addressed my needs. She became the go to gal when I needed help, an answer, supplies, assistance in any way.

For the next 7 years our lives were pretty quiet. Rich could still mow with an oxygen tank on the rider. We worked with his severe depression. We--the VA and I. His COPD exacerbations took a bit more from him each time.

He could get around the house safely, he could make his own snacks and cereal. 

Then he had his next event in February. Acute hypoxic respiratory failure. Those terms mean simply: He stopped breathing. Period. 

Rich is still upset that they revived him in the ER. He turned down going on a ventilator and they took him off the BiPap. 

Fast forward now to our 5th month in Hospice. It was the best choice we could have made. There is no way I can get Rich to the multitude of appointments that he would have had to do under regular care. I cannot get him in and out of the car and to the house on my own.

His care team comes here. They keep him at a comfort level and each Hospice worker visits with him too. It isn't like an office visit that feel cold and hurried. 

They don't look at us with pity in their eyes. They have been down this road many times with many patients. But no one talks about it. Why? The thing no one wants to acknowledge is that death is a natural part of living and why not make it easier for those loved ones at the end of their lives.

So here is the funny part. 

Please be amused. I went on Tuesday to meet my friend Pat at the CrossFit gym so I could follow her out to her house.

No one at the gym other than Pat has seen hide nor hair of me since June. At the end of class so many came up to me while I was waiting for Pat to change her shoes.

Those questions bombarded me. The looks of sorry and pity, the questions. I was surrounded by well meaning and fun folks.

So how are you doing? [They dragged out the 'are' with sincerity, anguish, concern, and pity.]

I was awful.

I simply answered, "I'm terrible, thanks for asking."  [credit to Nora McInerny]

Pat covered her mouth from her giggle and looked away as the person in front of me stood shocked and speechless.

But I was being honest.  I was not going to answer, "I'm fine, thank you."

Terrible may have been too shocking. Maybe I should have just shrugged. But I didn't get the pity party of looks anymore.

I did have a lady ask if she could talk to me outside of the gym as her life was turning down my same road with her husband. I'm a good listener and sometimes that is all we need.

Now that I could deal with and I gave her my info. I can help others. When this story reaches its end I will do exactly that. I am looking into volunteering for Hospice.

And that is my answer to "How are you doing."

Sometimes I am terrible. Some days I am fine. Some days I just want the world to go away and not be a responsible adult. 

Hospice is ....

You know, no one really wants to talk about going into Hospice. It almost seems like a dirty word. When I mention my husband is in Hospice I get that look. 

The look in someone's eyes that conveys sadness and curiosity at the same time. People who know me well don't do that, but a casual friend in the store may ask about hubby and when I tell them...I feel the temperature change in the air between us. And the look.

And then they don't know what to say. They do say the social polite thing.

"I'm so sorry." 

Then I freak them out even more and reply. "It's okay. He is happier now than he has been in 10 years."

Their eyes say --You must be smoking weed or something! 

Maybe I am supposed to be sobbing and tearful each time I talk to someone about it. But that would freak them out more. 

The truth is. We as a society do not talk about end of life. It is a tabu subject. There is an end for all of us and I understand that. It does not in any way make it any easier to loose someone.

If I mention this to someone who has experienced going through the end of life with Home Hospice most of the experiences are recalled as bittersweet but not horrible. Home Hospice is different than say Hospital or Nursing Home Hospice. 

It is face to face. One on one.

It can be frustrating. It can be funny. It can have moments of joy and deep sorrow. Worry, anger, sadness, and even wanting to quit are all things that run through the Caregivers mind. 

I've even thought 'Just get on with it already' when I've had a few days of little sleep and too much to do. Then the guilt with a capitol G hits me. Jeeze, did I just think that? How awful am I?

At first I was slightly annoyed by all the visits per week from Hospice. Now I look forward to them as they break up our monotony of daily Caregiving. They understand where the both of us are at mentally and physically. The social worker doesn't just care how Rich is doing. The social worker and the Chaplain are concerned with how WE are doing.

Sometimes it is just friendly visit and we chat about the things that are important to us. Other times the questions are more pertinent but not uncomfortable.

The nurses and workers come to our home. I am not trying to cart a wheelchair and endless supplies of oxygen to doctor visits an hour away. I can have his meds delivered by courier or pick them up at the local pharmacy [which I do].

In fact the pharmacy folks know me be now and greet me like a good friend. No sorrow in their eyes. Lots of smiles when they check me out.

Thursday afternoon hubby felt awful, I could hear his wheezing from another room. He had me call the Hospice Hot Line. I tried his regular nurse, but his phone was off [he was not on duty]. I was transferred to nurse Ashely who decided to come from her current patient an hour away...to evaluate Rich.

She came and evaluated him and spoke with the attending doctor. Med changes were given for a possible bronchial infection. Or the other reason he was feeling so poorly was that it was a progression of his COPD [worsening]. So we adjusted.

The next morning I got a text from Jason, his regular nurse that wanted to know how Rich was doing. He apologized for not having his work phone on. Rich was doing a bit better. Then Jason gave me his personal phone number. I said I never wanted to bother him on his day off.

His text back was pretty amazing. "Val, we've been friends for years, I want you to call me/text me anytime you need me."

Did I say that I've been friends with Jason and his wife for 7 years? As luck would have it, we were assigned a person we knew as a Hospice nurse.

So what is my insight right now?

Rich is living with a life ending disease and as he deteriorates slowly, he is enjoying his life by not rushing from one doctor appointment to another. He is getting people visiting him. Mostly it is the Hospice Staff, but they have become so important to him.

His good buddy Steve calls or visits often. Our granddaughter Ariel has come 3 times this year to see her Grandpa. 

A good gym friend of mine came out yesterday just to visit and drop off some potatoes so I didn't have to run to a store and get them for the supper I'd planned.

We sat on the porch and she told me about her granddaughter and how her own daughter was a 24/7 caregiver and how she has been for 17 years for Spinal Muscular Atrophy. It puts a different perspective on what I am doing. 

Her daughter and granddaughter have to be incredible people. Just saying.

We've been involved with Hospice now since the beginning of March. It was an adjustment for us. But I have to say that the years with Palliative Care [not Hospice but a great medical program] and now time with Hospice have given us a better journey through a life ending disease. I only wish we'd have known about this for my Father in Law and my Mother in Law.

I'm glad we didn't wait too long to get in the program. It has made a world of difference to my husband and I. We feel more connected with what is going on with his health and our own well being. 

[Except for those days -- which are many -- that I feel overwhelmed]

Today. I baked a cake for him. The smile was priceless.

Charlie. The dog knows.

There is more than one reason to have a dog.

Charlie.
He has been acting a little different lately. He chooses not to go outside with me to do chores in the morning. He insists on staying in the house near hubby. He insists on getting up into the hospital bed with him during hubby's naps.

Does he like that situation much better than going out and smelling things? Or does he know that his master is not well.

When Charlie was under a year old, my MIL entered a nursing home. Charlie was allowed to go see her on a regular basis. He'd sit on her bed quietly while she petted him. In the hallway as we'd walk in or out residences would ask to pet him. Since he is only 7 inches tall, I'd lift him up so people could pet him.

Charlie would wag his tail furiously and make little soft noises. Sometimes a resident would give Charlie a ride in their wheelchair. Charlie would sit quietly and proudly as if he was a tiny king.

Charlie's nursing home visits stopped with Covid. I asked about going once more and since my MIL was no longer a resident [she died during Covid], they wanted Charlie to be a licensed Canine Good Citizen.

Poor Charlie. Sit, stay, down, are not in his vocabulary. 

Waggy Tails, Grunting with Pleasure, Wiggling, and being absolutely Cute are his strong points. Being silent and snuggling up to people are another.

Charlie now greets the hospice people with Wiggling and Happy Grunting [his Pekinese mom grunts with pleasure].

He will sit on his chair and take in all the conversation between Hospice and hubby.

When hubby gets his sponge bath, Charlie has to sit on the bed and oversee the process. He lays on the end of the bed and watches. Still as a statue.

Lately he is spending more time watching hubby. His every move is followed. Normally Charlie will take his place on the couch or his chair in the eating area and snooze while keeping a sleepy eye on the activity in the house.

Now he follows the wheelchair everywhere. 

I'd say that he is an exceptional Emotional Support Dog. Does he know what he is doing? Probably not. 

I looked up Emotional Support Dog and was surprised at how easy it is to get an animal certified without any special training.   Hmmmm.

That aside. Charlie knows.
He knows that one of his people needs his warm little body next to his and that somehow it makes that person feel better.

Seven years ago I brought home this funky little puppy and my husband said, "Well, what is he good for?" I handed the pup to my husband and he snuggled right in and made himself at home.

Indeed, what is he good for?

Charlie, you do not need a letter or a certification. We now know your purpose. 

And it is appreciated.

I figured it out...

 It isn't so much as being cranky and tired, although that will contribute to my current feelings.

I keep a paper journal. You know, one of those spiral notebooks with paper in it. The kind you have to actually pick up a pen and write with.

I use it to write down meandering thoughts and mostly the stuff I won't post anywhere on the internet. I can say what I really want to say about certain things without the danger of anyone being offended.

I can approach politics, religion, medical care, and people without any blow back. Well, I suppose if the journal is looked at after I am dead, somebody somewhere may be offended.

I finally realized the Why as to How I was Feeling.

I have run out of empathy and sympathy.

One friend who visited did nothing but talk about his 'situation' and his hardships and his struggles when he came to visit. In the past I offered empathy and listened intently.

My Respite girl who keeps showing up late has offered up her tales of woe without me asking for them. Normally I am the type of person that will listen and figure out if there is a way I can help or perhaps show verbal support. [Her tales of woe include 'excuses' for how and why she ends up being over an hour late]. 

[My thought on inconsistency is this. If I cannot depend on her to be timely, can I entrust her to care for my husband while I am not home? 

Hubby's thought is this. He is a Vietnam Veteran who fought in ground battles in country. IF a person did not have your back and did not act with responsibility, you could die. Pretty simple and direct views in my opinion.]

Here I had two people who came to 'give' me Respite and comfort [Shay's job is this] ... didn't. Instead they focused on their issues and problems and dumped them on me.

So while rambling and writing...this light bulb came on and suddenly I felt much better. I understood where my darkness was coming from and why it was bothering me. 

Here were two people over a period of days expressing all their challenges. They forgot that they were expressing their challenges, issues, problems, to someone who is caring 24/7 for a person who is dying.

They seem to forget that I am having daily emotional mountains to climb. Every day, I watch my soul mate disappear little by little. I am putting everything in my life on hold for his care. I am giving up the things I love to do and things that give me strength and emotional release for him.

My inner self has built a wall that never shows really how I feel on the outer self. 

[It's complicated--> that is how I grew up--> some day I may explain that ... just say, that is how I survived an abusive childhood with mom.]

I'm done feeling empathy and giving support right at this moment for those who need and crave it at every turn. 

Shay did show up on Tuesday and offered up some incredible 'reasons' for being late. She claims they are not excuses and said sorry sorry sorry about 100 times. 

I was chilled to the bones, I just raised one eyebrow as she dug herself deeper into a hole with me. Could she not read my face? Was she so wrapped up in her issues that she could not see how stiff I became? Did she not feel the cold air wafting off me?

She begged to let her come on the 4th where she could make Holiday pay and I reminded her that my Granddaughter would be here and that it would be family time. She asked to come another day [to make up for her loss of pay]. I stated that I'd see her Tuesday the 8th at 9:30 sharp. 

I'm giving her Tuesday because I have a car appointment that I need to get to. After she is done with her shift ...if she shows, I am calling her company and the VA to let them know that she is not living up to expectations. 

This issue changes the dynamics of trust which is a very big issue for hubby and I.

July 1st and Exhausted

 I won't lie.

Caregiving is exhausting. It can be Caregiving as a mom to kids, a mom to a disabled child, a young child caring for a parent, or a spouse caring for a spouse or elderly parent or relative.

I watch the latest PBS program on Caregiving which is a 2 hour program. Our Chaplain suggested I watch it as she felt it was interesting. It tells the stories of a few families along with the history of Caregiving and how hard it has been fought for by advocates over the years.

Francis Perkins served in the cabinet of FDR as Secretary of Labor. She was a powerful voice for not just Caregiving but the Implementation of Labor Laws to protect children, and so much more. If you are interested you can look her up.

So, right now I am exhausted. I my insomnia this past week was well used in visiting the night skies and watching the Fireflies mating dances. It eventually catches up and Sunday night I went to bed at 8pm and did not wake up until 5am.

It isn't just sleep deprivation, it feels like my soul is being dragged through a fog. When I am tired like this, everything is ugly. I am ugly. I am short tempered and have to bite my tongue.

What has not helped at all is that the Respite person has become unpredictable. I had a car appointment. As I am waiting for her with keys in hand to leave.

Text: Sorry hon, is your appointment today? I'm running late.

Me: Yes.

Now if anyone knows me, they know my work ethic is extreme. I always showed up before my shifts, was never late, and never had excuses.

Text: I forgot my medicine I have to take twice a day and had to go back for it.

Me: Hmmm.

I was not amused at being referred to as hon. 

Other reasons for being late. Overslept. Traffic. [on rural roads? plan for it!] Can't find childcare. 

I give her the benefit of doubt but it seems more and more that poor planning is the issue. None of the 'excuses' are valid. Not if she would plan ahead.

I'm going to combine that with the stress from the long weekend stay of my friend. I like him, I enjoy his company. I don't mind his pets. But more than one overnight stay is my new limit. And I am not available to waltz around in the woods and watch out for him.

I am going to set boundaries. I need to. Granted he helped weed my gardens, however I told him not to drop the weeds in the grass I just mowed.

See? When you lose sleep and are burned out, every, little, thing, matters.
Muddy dog prints on the floor. Talking when I need silence. Oatmeal on the table. Spilled coffee. 

None of those things normally bother me. 

However I seem to have become a nit picking freak. I tolerate the messes I continue to clean up [endlessly] from my husband as he loses control over some functions. I remind myself he cannot help it.

Then someone comes and adds to the 'burden'. In reality, they aren't really. But in my mind, it is so.

Jason finally got the idea I didn't want him in my way. He left. Rich will miss his company, but right now I won't. I want silence. 

Rich went to nap, and I decided to put off everything else after scrubbing the house and the rugs...

to dive into a place of divine pleasure. Getting lost in some creative endeavors.

 

After all, what really waited for me outside was storm damage that I needed to attend to.

When Respite shows up today, I use my 4 hours to run errands and then come back and start working on the fencing damage. See, the work doesn't stop just because one is tired or angry, or frustrated...

It still is in your face when you step out the door.

I am looking forward to NOT doing anything Hospice or visit related until Ariel comes to visit on the 3rd.

I may pull out chunks of bark and branches and create a fantasy world [all while tending to my husband's needs].

A final note.
With Caregiving like mine, it can be horrible and beautiful at the same time. It is tiring, it is hard, it is worth it.

We are lucky to have support where other folks don't. So I have to count my blessings as well as my gripes. 

But the mood of the Caregiver goes up and down with stress, anxiety, and fatigue. I am human, so I will have human moods good or bad.

And then this...just minutes ago.

Text: Hey hon, I'm sorry but I overslept, these new meds make me sleepy are you okay with me coming at 10:30 and staying until 2:30?

My response...slammed the phone down on the table.
I should have said no but I didn't. 

Me: I'm not pleased at all. I had to cancel the appointment I had for 10:30 and make it for next week for my car.

I told her to come. I have to get sweet feed, fly spray, wormer, groceries, and medications, along with other errands. 

How else am I going to get these things taken care of? 

I will be reporting this to her bosses and to the VA who contracts her company.

I am done with people who do not have a work ethic.

The conundrum? Rural health aides? Few and far in between and very unreliable. Those folks should be paid good salaries and be strongly vetted.

My last thought. If she can't be trusted to show up on time.
Can she be trusted to be a caregiver for 4 hours with my precious husband?

Not to be a downer...

 

Finally last night the dam broke in my heart and I had a long long quiet pity party for me. I realized that the house was going to be so empty when he is gone. The concentrator which has been a part of our lives for the past 10 years will be gone and quiet....
I won't get the tapping of the coffee cup in the morning and the question...

"Coffee made yet?" It used to irritate me so much as he'd say that before he'd say Good Morning. 
or "Hey what's for supper? Did you make it yet?" each afternoon. He knew how much that would get me going.

I'd laugh and threaten to hire a real cook. Our tiny house will feel empty after 30 years of the two of us knocking about inside of it.

Then I started thinking of all the paperwork I'd need to do. I mean, why not? These are things one thinks of at 1AM. 

I did decide to start a memory book though. I've taken years of photos of him. Mentally, I started to organize them in my head. To provide a distraction, I put on my headphones and turned on some 'Chill Out Music' to relax me.
So when this song came on unexpectedly .... 

Yeah so I totally lost it...but silently ... with salty tears dripping down my cheeks. 

The first few lines just slayed me...I've heard this song before and I know how it effected me then....

I know it hurts
Its hard to breathe sometimes
These nights are long
You've lost the will to fight...

And we all know how You tube works, they find this song in a play list and the playlist just kept on beating me up with songs of love and loss. But I needed it so I felt it in my heart.

As I listened and let my heart open to the emotions, I mentally started to list what I'd need to put a book together. I started smiling through those tears in the dark. Our memories, how we met, what we did...our crazy chance meeting. The instant knowledge that I'd met my once in a lifetime soulmate.

Handsome, funny, truthful, very OCD, PTSD'd veteran, all male, all full of himself, kind, honest, trustworthy, intense, fierce, difficult, loving man. 

In truth, he was a difficult father and husband in the first years he came back from Vietnam. Demons chased him constantly.  He didn't understand what was happening to him as so many veterans suffered the same unimaginable issues.

Perhaps he wasn't the best dad in the world but he sure tried hard when the grands came along.

There was nothing he wouldn't do for all of his grandkids. He still feels that way.

So now I am concentrating on a project. A photo book. Something that I can look at and remember.

It gives me a sense of direction and distraction right now as I watch his body deteriorate. This too is a process of living. I won't ignore it, I don't want him surrounded by strangers.

He is comfortable even though his body is showing signs of organ failures. He is home with his silly dog and his nutcase wife. His edema is beginning to rage all over his body but he is concentrating on the things he loves and holds dearly. He is not afraid, he is not in much pain. And he still taps his coffee cup for me and grins like the devilish fun guy he has always been.

And that is good enough for me.

Audacity

 I rarely get really irritated. 

But when questioned as to the 'why' I need Respite Care ... 

I'm sure the question was meant to be innocent but what I wanted to spew back out could have been rather nasty. I bit my tongue and just pulled my phone away for a moment...

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~`

Do you need rest from someone calling out your name at all times of the night for one reason or another.

Oh sure. Those of us who have been parents understand this. A baby cries in the middle of the night and you are up to see what you can do to stop the crying. It may be a messy diaper, hunger, tummy ache, or something else. 

I was a young mom and could handle that rather easily. I mean come on, when you are in your 20's as I was, a sleepless night was nothing. I simply handled things and went on about my day. After all, that beautiful crying baby was so amazing and I was so full of love and adoration.

Fast forward 45+ years. Sleep. Oh for wonderful uninterrupted sleep. That sleep that evades us as we get older.

Things happen in the middle of the night. Things like the commode being missed, or a wardrobe failure. Or even the malfunction of the oxygen concentrator so the large 02 tanks had to be brought out. Then hubby was afraid to go back to sleep for fear that the 02 tank would run out. 

Can I have a glass of water?
Can you make me a snack?
Can you help me [pick something, anything. Pull up pants, put on shoes, button a shirt, become a short order cook, change the concentrator hoses, help with the wheelchair, socks, shoes, ~~ well, the list goes on with about anything one can think of.]

That is not to say that I can stop mowing the yard, cleaning, doing laundry, chores, and all of the other little things that have to be done on our small place. That includes juggling a schedule of the weekly bath, and other visits from the Hospice Team.

However with 4 hrs of Respite [twice a week], I can leave a load of laundry to be washed and dried, the dishes are done from lunch and often there are fresh homemade cookies on a plate or in a zip lock bag when I return. Sometimes, if I remember to put something else out, there can be a cake made also!

Last week Shay made a cold Italian salad that I'd laid out to make when I got home. Goodness. My supper was made!

She'd also swept up Charlie hair and cleaned the bathroom and organized my messy cabinet drawers.

On Sunday evening my neighbor Justin came down as promised and mowed down two large thistle patches that he'd promised to help out with. Last year it took me 3 or 4 days to chop it down with our scythe. He finished that job in an hour and said he'd be happy to do it again. Of course he was having a man and machine moment. Guys love their gadgets and he has a brush mower that he pulls behind his ATV.

Thistle patch Sunday morning before I asked Justin to mow it...I was using the scythe once more and decided I just didn't have the time...

I related this to a certain person. Apparently she felt that I didn't really 'need' Respite or all of those nice things that were 'given' to me. Why did I need that? After all, .... YOU are retired! What else do you have to do with your time??? Make HIM do more! He is just faking some of it. 

This person has never been with my hubby when he is getting dressed. Nor has she been with him for a 24 hour period. She has not seen the daily struggles.

For example, getting dressed seems like such an easy thing to do. Except when it isn't. Baby steps to get dressed. Simple things become mountains.
Yes, this is part of a life ending disease and that is what Hospice is for along with Respite care to give the Caregiver a break.
AND...I love my breaks.

So when someone doesn't understand why I need them...

Well, perhaps they might if they were to walk in my shoes for a couple of days.

Anyway this was my rant and my rave. 

I pushed the end call button and stared out the window.

Audacity: rude or disrespect behavior.

Ignorant: lacking knowledge or awareness in general.

I think I'll go with Ignorant. It fits better.

The hardest thing I did was to ask for help. 

The person not understanding my need for Respite? His daughter.

I'm changing the Ignorant...to

Willful Ignorance:
the act of intentionally ignoring or avoiding
information that could be inconvenient
~~ a conscious choice to remain
uninformed especially when
--my words--
when the information could be 
uncomfortable

[as much as this sounds like complaining, I want to state, that this is very valuable time between my husband and I. At the moment his condition is deteriorating and his edema is beginning to become a huge concern. I do get tired of the endless responsibilities. I don't hate our time together. I cherish it. Sometimes I get very cranky from lack of sleep and frustration of always being the adult. 
Yet I still strive to make his time left with me as comfortable as possible.
He is my soulmate after all.]

Paradox of Hospice

So our  plan is one of no pain and a lot of comfort and time spent together. 

I'm a pragmatic person. When Doris [another Hospice nurse] visited this past week she had some incredible advice and pointers. She has been a Hospice nurse for 30+ years. She is full of cheer which seems odd in her profession. 

Her advice. 
Visitors should be one at a time and only those who actually matter to you. If someone you don't really care for wants to visit...don't be polite, just say no.
If you have things you wish to do, do it if you are able. 

Watch the birds, enjoy your mules. Sit on the porch and drink coffee.

We are going to attempt--- with some help, a last fishing trip for hubby. One of Rich's lifelong friends is going to help us. He will provide the equipment, the car ride and the poles. He will even bait the hook for hubby.

We are getting a hospital bed for hubby on Tuesday. He will be able to elevate his legs to reduce the edema he is suffering from. Since he is unable to walk much fluids do build up in his legs. 
I've become and expert at putting his compression socks on.

One of the most important things we did this week was go to the cemetery where his folks and other family members are buried. It was quite the production just to get him in the Subaru for the ride, but we did it...one slow step at a time.

He wasn't able to get out at the cemetery to visit his parents' grave, but I was able to pull up close to the fence so he could watch me take care of the flowers.

He got confused as he said "No one has a flag for me out there."

I pointed out that he was still alive and he shrugged and said, "Oh yeah, I guess I am."

I put out the flowers and as is tradition, put a pouch of Grizzly Wintergreen Tobacco in the ground in his father's spot. 

Me: Do you miss your dad?
Him: Yes. A lot, every day. He was my best friend. OH no! I forgot to bring him chew!"
Me: I brought some and took care of it.
Him [he teared up]: Thanks sweetie. I just miss him so much.

We sat for a while and I pulled the car up where he could see his Great grandparents and Grandparents stones. He was pretty quiet. 
The cemetery is located on a road called Old Buzzard Lane. To get to the cemetery one has to drive through a dairy farm with cattle and round bales on both sides of the road. We waved to the farmer.

Rich had me drive the backroads to the cemetery and then gave me directions [I pretend I don't know the way so he can guide me] to drive another way home. He pointed out the different farms members of his family had on the way. 

So what is the Paradox? Before Rich entered Hospice we rarely had any visitors. Once the 'word' got around we started getting calls for visits. 

We pick and choose and set the rules. Only those who are very important visit. The looky-loos are turned away. 

Good neighbors text and drop by for a wee bit. The visits are nice. We set most visits at about an hour. But Rich enjoys them so much.

His Home Aide brings so much joy when she comes. His face lights up when she arrives. 

This week his regular nurse drove his classic muscle car on his rounds. It was a 1970's Chevy Nova SS which sparkled and growled.  Rich was beside himself. He offered to trade off our car for the Nova. 

So does this Paradox work? Rich is happier now that he is in Hospice than he has been in 10 years. He smiles more, chats more [still has aphasia which makes conversations more fun] and seems to have more light in his eyes when people come.

Hospice is often mistaken for a horrible time of life for many and eventually it is as the patient is expected to expire. 

However, being pain-free and comfortable and ... the extra care from the Social worker, Chaplain, Nurses, and Home Aides has improved his quality of life for the time he is still here.

No, it isn't a cake walk with love bubbles floating about in the air, but we are making our time together count as we have throughout our marriage and time together.

Oddly enough, his daughter has visited once in April. She called once this month to talk to him. I don't quite know how to take it. Rich just says that she is "Too Busy". I guess I'll take that as an answer. 

The Prolia thing

 

My near to last post about using Prolia.

I was called by the Endocrinologist's office regarding setting up another injection. 

Here it goes.

Me: No, I am not interested in continuing with Prolia as it caused me so much fatigue along with aches and random pains. Right now I cannot deal with the fatigue and pains as my husband is in Home Hospice with me as his CareGiver.

Scheduler: Okay, I will notify your provider. I am so sorry to hear about your husband.

Me: Thank you for being kind.

End of call.

Three days later.

Nurse: I'm calling from Emilee Peterson's office in Endochronology. I'd like to have you reconsider your Prolia shot.

From what I understand you said it caused you fatigue. Dr. Yadda Yadda [I don't recall the head doc's name so Yadda Yadda will suffice]...says that Prolia doesn't cause those types of side effects.

Me [ummmmmmmmmmm jeeze Dr. Yadda Yadda READ the fricking FDA side effects complaints!!!!]:

Oh? Really?

Nurse: Yes, Emilee would like to go over other options with you and we'd like to schedule an appointment. 
You know that skipping a dose can make you lose any bone growth you may have had and make you more prone to fractures. Any benefit you have had will be lost.

Me: Yes, so I will more than likely be in the same boat I was in as of December of last year.

Nurse: We strongly suggest with your severity of Osteoporosis that you consider another treatment.

Me: And that might be what? You know I have tried each medication on the market and so far have not reacted well to any one of them.

Nurse: Well the side effects of fatigue are more likely not from Prolia but from the stress of being a Caregiver to your husband.

Me: [Not going to argue, they have all of the answers] Hmmm. Well, I'm not interested in pursuing this at this time. My plate is full right now. I'm caring for myself with CrossFit and leaning on the Hospice and Respite folks.

Nurse: [I could hear her frustration] Perhaps we can set up an appointment in November to discuss a plan. ... You are doing CrossFit? 

Me: Yes

Nurse: Recommendations for Osteoporosis are to limit certain movements and weights. You shouldn't be lifting more than 25lbs.

Me: [insert chuckle -- snort] This morning I just finished a series of deadlifts of 85lbs along with pushups. My total weight lifted for the workout was 4,675 lbs in a series of lifts. That was my workout today. My warm up included a personal record of 150 lb for the deadlift. 

Nurse: ---very quiet---then... Can I send you over to scheduling for an appointment?

Me: Not at this time. 

Nurse: You will contact your PCP regarding your Caregiver Stress and Fatigue correct?

Me: I'll contact her and see her so she can know how well I am doing. Thank you for your time.

I hung up the phone.

Hubby: Who was that?

Me: The bone people, the want me to take the next shot of Prolia and I said no. Now they are telling me that I'll start breaking apart in June. What the F--k. I tried it, I didn't get along with it.

I went to the FDA site to read once more the side effects most complained about with Prolia:

Fatigue is reported by 45% of Prolia recipients. THAT is the first line of side effects. 
Dr. Yadda Yadda is full of Sh-t.

And after I calmed down and pulled some weeds in the flower garden. I thought about it. Fatigue.

Losing sleep as a caregiver doing home hospice is one thing. Since the meds are basically out of my system now, I have not needed daily naps. In fact I am like a mini dozer who eats Energizer Bunny Batteries. Fencing, mowing, weed whacking, hiking, and NOT having fatigue, headaches, and strange pains that come and go.

I went through a whole bottle of Tylenol in 6 weeks after getting my Prolia shot. I haven't had a headache or bone pain since mid March. 

I rest my case and am going out for a walk with the dog.

The part that really pissed me off was the fact that it felt like she was disregarding MY vision of what is going on with my body. My Osteoporosis is bad. However I am not in pain. I have been building muscles to protect my bones for years. I work hard on balance, strength, and endurance. 

She was just doing her script of what to say to get me in. I may consider it in the future again but not in this timeline.

Anticipatory Grief part II

 I wrote a blog about Anticipatory Grief on March 2, last year. I'd never really heard about it until there was a remote class via the VA Caregiver Social Workers last year.

It wasn't exactly a 'happy' post, more of a reflection of what I thought I knew and understood about the term Anticipatory Grief. I'm glad I did the class. I also thought I'd had it all figured out. 

Insert a big laugh right here. I like to think I can handle all things tossed at me. 

Well, things have changed radically. I actually have adapted I think fairly well. I knew I could possibly enter a phase where I had to do most everything for my husband. The damage to his memory and thinking skills are now more evident from his resp. failure. 

Shay, who is a young single mom and our respite gal said she and Rich had good conversations and that he seems to be okay with what is happening to him. He seems settled and at peace with it.

She then asked me how did I feel?

I said I was good with it. After all, Rich and I set up our Estate plans and Living Wills in 2012 and we had these discussions about aging and illnesses before he had cancer in 2015. The doctors will argue that his cancer treatment gave him at least 10 more years of life.

What didn't happen is good of quality of life. Doctors would point out that he was still 'here' and that he was able to visit with family. The cascade of issues that followed in the next two years took everything he lived for away from him.

Living day to day became a struggle combined with Major Depressive Disorder. His PCP told him not to feel sorry for himself as there were others worse off than he was.

[Yes, she said that and I immediately asked to be transferred out of her care.]

That is when we transferred to Palliative Care. His issues were dealt with and no shaming for being depressed or feeling hopeless. No intrusive exams. Pain management and mental health support were vital to him.

We stayed with the Palliative Care Team for 6 years.  

So back to the question. How was I dealing with the fact that we were now in Hospice Care. My mantra was 'I'm good with it.'

I understand the implications. I understand that my soul mate is dying. I also wonder what happens after. 

Wait.
I lose half of me in a way. We've been partners for 30 years. We've been part of each others lives for that long. For the past 10 I've been his 'Care Giver'. For the past 30 my life has been helping him negotiate his daily life which included many times in and out Mental Health Admissions. 

I was once asked why I'd hang around someone like him. My reply was pretty simple. He is an honest man, he loves intensely, he has a true heart, and he doesn't play games with people's emotions. And. He is my partner.

So.

While driving to town to get some groceries two days ago, a song came on the radio.  I don't recall what the song was. But I did have to find a spot to pull over. I parked on a side road that overlooked a trout stream.

It hit me.
Yes, I am prepared. Maybe. I am prepared for what happens and the process of his dying. 

Maybe I am not prepared for the 'afterwards'. 

Respite success and failures

We have been approved for 8 hrs a week Respite Care. This was a hard decision to make. I mean how can I leave his care for 4 hours to a complete stranger. Of course we had resisted, but after talking to a social worker I relented.

The care team used an agency to hire someone to come out twice a week. I chose my days that I go to the gym to work out. I can actually work out and then if I need to, get groceries, meds, run errands, or simply do on a picnic by myself [or coffee with friends].

The first week was a disaster. The Home Health Aide didn't show, didn't call, and made excuses to the agency. The second date was no call no show. I was pretty upset and called my Social Worker at the VA from the car as I headed to town to pick up meds and go to class.

Apparently that got things moving. By Friday afternoon I had a promise from the agency that another person had been found and she would be here on Tuesday. I was quite skeptical.

She showed up! 
She is a young single mom who has a cheerful and bright outlook. I gave her the quick rundown on things and off I went to class. 

I finished class and it felt very strange not to have to rush home and deal with the next set of medications or all the other things I generally do. In truth, I sat in my car for a few minutes trying to figure out what I could do and how to work out the timing of ... not doing my regular duties.

I did something I haven't done before. I went and purchased a lunch from a local co-op and then drove to a place where I go to see wildflowers in the spring.

I parked and opened the back of the Subaru and had a picnic. I listened to Tainter Creek making soft noises and then headed out on a little walk. I found plenty of wildflowers, Anemones, Virginia Bluebells, and some Blood Root that had dropped the blossoms. None of the trout lilies had blossoms either.

I didn't feel obligated to photo anything, I just felt like looking and admiring them.

I ended up walking to the old Cottonwood tree along a faint trail. I leaned up against the tree and listened to the creek and the birds in this steep valley. The valley is so steep in this spot that it often floods with rains and washes out our gravel roads. 

Truthfully, I was having a hard time not returning home right away. I had yet to figure out what to do with myself.

When I did get home I found that "Shay" had cleaned the floor [Charlie is a shedder galore!], made cookies, made Rich lunch, and had washed dishes and was looking for more light housework to do.

She and Rich got along just fine and she said she'd love to make homemade goodies while doing Respite. I said that was just wonderful as baking goodies was not my thing. Hubby enjoyed her company and she was very sweet and helpful. 

Today is Friday and she will come again. I'm trying to consider what to fill my 'free' time with. It almost seems obscene that I can have 'time off' for good behavior.

This is all new to me. Having someone come into my home while I am not there was a bit concerning to me at first. Then after my experience with Jason helping and now Shay, I am still a bit hesitant, but but I'm willing to give it a go. It is for hubby's safety after all and a bit of relief for me.

I think I'll take Charlie and go hunting for Trilliums and other spring flowers. It feels extravagant to have time like this.

Time immersed in Nature is always healing and soothing.

Let's just not sleep...ever...

For real.

😵‍💫

Let's just face it. I get really quite cranky and ugly when my sleep is interrupted multiple times a night. Especially when the sleep wasn't good for the past few days.

I know why some people choose a Nursing Home over caring at their own home. The demands are sometimes super human. 

His med change hasn't changed his sleep habits. For two days we thought we had it going pretty good.

Then bam.

A half hour after he went to bed, I got the "Val. I need that pill." I had just turned off my reading light and started to fall into dreamy land.

Lights on. Pill handed out.

That med worked for 2 1/2 hours. "Val. I'm hungry." I looked at the clock. Midnight. "I want oatmeal."
Lights on. Bleary eyed I made instant oatmeal. I went back in the living room to wait. Tap, tap, tap, tap...the endless tapping of stirring his oatmeal into tiny chunks felt like a hammer in my brain. It was a hammer in my brain. My teeth hurt and my eyes squinted.

So this is what a major- burnout -melt -down felt like. I wanted to walk into the other room and grab his cereal away and then tell him to cut it out and JUST GO to BED!

Then the waves of guilt hit me like a brick up side my head.

He couldn't help what was happening to him. He can't. It is not his fault. His brain says feed me. His brain says *I'm awake.* 

I clear the empty bowl away and say something snide under my breath. Where did that come from? Geeze, I'm so bad. I hate myself for a moment as my head starts to feel squeezed.

I ask if he is ready to go back to bed. He says no, he can't sleep. Do I call the nurse line and ask if he should have another pill? Rich says no, it won't help. He is wide awake. 

He wants to sit at the table and just sit.

I go back to my little cot which feels like a torture chamber. My everything aches and my head throbs. And I am surprised by how angry I feel.

Damn.

At 3am--ish he wheels back towards the bedroom. I help him switch over to his CPAP. He decides to leave his clothes on and lays down. I try to lay down again.

He gets back up and sits on the edge of the bed.

"What now?" I ask.

"Nothing," he replies.

I get up and find some Tylenol and try to find slumber. Charlie groans when I return to the cot. Even he is tired out.

I keep an eye on him. By the light of his clock and can see him attempting to peer at his hands as if he'd never seen them before. What is he doing? 

I fall into a fitful sleep and am awakened an hour later as I hear him get up and sit in his wheelchair. The lights go on and as he scoots through the living room he says, "Coffee made?"

My head blows up and I put on my clothes for the day. I grumble under my breath with words I shouldn't use around children or the dog.

Night and day blend together in a nightmare. Rich asks me why I am so mean when I put his coffee cup down harder than I intended to.

I apologize and explain that my head is pounding from lack of sleep. He just looks at me. He hasn't had sleep, his night must have been even more miserable than mine. I take a deep breath and rearrange my attitude.

My mantra.

It is not his fault.

It is not his fault.

It is not his fault.

Be kind. Be kind.

Think kind thoughts.

Stop before you say things.

And then my biggest fear hits me. What happens when he is gone from my life? Maybe that this is why I am here. This is us. I will not look back on these days with anger but with more understanding of what it is like.

Maybe my experiences could help someone else.

More changes... and adjustments.

 Well, things are changing again which is how life goes, right?

The Dexamethasone has helped with the breathing and with the appetite [none at one point] and wakefulness. In some ways the wakefulness is overbearing. Often hubby is experiencing being awake most of the night and not having any day time fatigue. 

He has asked for breakfast at 3:30 am. Uffdah. It gives a whole new meaning to making coffee while bleary eyed. After exactly 2.5 cups, the oatmeal must be made in an exact prescribed manner. Each day I am given the specifics, even though I've memorized it.

At first I get peeved, then I remind myself that the DXM disturbs his sleep cycle and he has dementia. This is how he lives day to day. Our new ab-normal of sorts.

It seems that every other day he actually sleeps the night through and I have trouble waking him. I imagine his poor ol' body is just exhausted after a 20 hour marathon the day before. This effect is from the DXM interrupting the cortisol in his body so his brain isn't on the same clock as mine.

Meals. Every two hours.

"Can I ask you something?" I hear. 

Sure.

"Can I have an apple/popcorn/cereal/toast/chips/cheese and crackers."..name something that is eatable and that is what he wants. Or "I have a taste for...a banana split, liver or onions, chocolate cake...", or something SO specific that I would have to go shopping for it. I usually placate him with the intention of doing exactly that.

My thought process. He wants it and it won't leave his mind. I have a 76 year old toddler. At least he doesn't stomp and throw a tantrum. I do my best to accommodate. Why not? One day I won't be able to.

I just ordered a 'camp' bed to put in the living room so I can be closer to him at night. Our only other bedrooms are up the stairs. I've always wanted one of those for sleeping on the porch on summer nights so I can watch the stars overhead.

Time to redecorate! See, I will find something positive in this. I ordered a nice 'Antique Rose' blanket and matching curtains since the camp bed will be next to the porch windows. I might as well make it my 'special spot' for the duration.

The Hospice nurses knew that Rich was having some trouble with sleep but it has gotten much worse. The up side is that I found some programs he might enjoy watching. 

Here are a couple of funnies to go along with Caregiving.

Some good news is this. The Social Worker for the VA Caregiver program and I talked last week. I inquired about Respite Care. 
Destiny called me [Yes...very cool...THAT is her name] and is now interviewing a couple of candidates for weekly respite.

YES!

and I can arrange to go to the gym and maybe even have lunch with a friend.

I qualify for 8 hrs of Respite Care a week. I feel like somehow I won the lottery. I'm not sure what my share could be yet, but the fact that someone who can be with hubby while I do the things I need to get done?

Priceless.

I'll split it between two days a week.

Fingers crossed for this.

One day at a time.

A lesson I just learned to accept: