As inspired by Mary Landberg: Our Hands at Hospice

As inspired by Mary Landberg: Our Hands at Hospice

Although Dad was in confinement at Hospice, I removed the gloves and asked for this photo to be taken.

I am grateful to Mary for bringing her beautiful work to us, you may click on the photo and it will take you to her site.


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Happy Dance!

I am ecstatic I received a interim supply of sleep meds from my doctor.  I thought it would cost an arm and a leg since I didn’t think insurance would even cover it, but it did.  I am one grateful brain injured person.  Rest and a routine, here I come! 

And the crowd roars!  🙂 

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Insomnia, the cat, and crying at the kitchen table

I have been minimally surviving the last several day, re-living Dad’s dying is still so very painful to walk through again.  Add to that I have run out of sleep meds and there’s a snafu with the prescription, I’ve been getting, oh, maybe 4 hours of sleep each night.  Nice, eh?  That’s one thing I do not understand about TBI is why in the heck wouldn’t your injured brain want rest in order to heal?  I was never an insomniac pre-TBI.  Bah!

And, my kitty with Kidney Disease, things are progressing and I need to take her into the vet every couple of days for subcutaneous fluids to keep her from slipping away more.  So while I can’t sleep, I ruminate about doing the right thing, am I just postponing the inevitable?  I know that is definitely the case.  How is her quality of life?  Is she happy about still being here or is she ready to go?  Some of these questions will be shaped in the next couple of weeks as we get started doing the fluids every week.

And lest I forget to mention, the financial drain and how this reminds me of when my dog, Rudy, was declining in health with her Cancer.  Posts here and here.

I’m making myself try to imagine life without Tux being here, where we would bury her and everything.  Part of me is saying this is all WAY too much right now.  Being such a part of Dad’s passing, and, within days before his passing our neighbors put their dear dog (and our dear friend) to sleep.

But it can’t be too much because it is happening.  I believe for Tux I’ll hold the same thing true as I have for my dear Dad and dog Rudy…as long as life holds you here, I will fight for you, but if it’s your time to go, I’ll help you go.  It is the least I can do.

And the crying at the kitchen table.  Yesterday Richard brought the mail in, and has been usual since February, some of the mail was for my Dad.  Bills, I’m fine with.  I opened a notice for the final reunion of Dad’s Navy Seabees Battalion and I completely lost it.

I was the one who got him in touch with the reunion committee years ago, Dad even hosted a reunion in Seattle which included everyone coming to Bremerton (where I lived at the time) so they could tour the USS Turner Joy.  One of the gentlemen in the group had worked on that ship, it was the most surreal feeling to see that come full circle.  I got teary eyed.

So yesterday, I cried and cried at the kitchen table remembering…and…letting myself feel how utterly painful it was to watch Dad waste away.  I remember sitting there at Hospice feeling so terribly alone, feeling a kinship with every other soul in this world who has watched a loved one die.  I thought of those in Calcutta dying in the streets, and those who experience the Holocaust, and millions of people who have shared in this same experience.

Being tired because of lack of sleep and now an emotional outpouring, I was…and still am exhausted.  I’ve been having trouble staying focused, organized, and on task lately.  I get little done by day, and am awake almost all night.  Outside of the lack of sleep, I know it’s grief and I need to be gentle with myself.  There is a reason it’s called grief ‘work’.

I will get back to blogging about the funeral as soon as I am able.  Thanks for being here, dear readers.  Life is still a precious gift no matter what.

Posted in Aging, Animals, brain fatigue, Grief, Lettiing Go, mTBI, Pets, PTSD, Sadness, TBI, Tears, Traumatic Brain Injury | Tagged , , , , , , | 14 Comments

Days 9 and 10 with Dad (Thurs. April 25 and Friday, April 26, 2013)

Days 9 and 10 with Dad (Thursday, April 25 and Friday, April 26, 2013)

With uncle taking the day shift of being with Dad, Richard and I went back to Dad’s assisted living apartment; it’s the only place I knew of where I could get a secure Internet connection for checking email.  Well, okay, so my brain is really, really tired.  I get that.  But, why in the world did I receive an email from for a $10 purchase of skin cream?  I didn’t order that, did I?  I wouldn’t order anything online away from home when I can’t guarantee security.  Hmmm…!

I also received a fraud alert email from American Express that there had been three consecutive charges to all totaling around $300; bless them for their diligence and commitment to excellence.

I immediately called American Express; they canceled my card and would send me a new one.  I freaked out…lack of sleep, fear about maybe my computer had been hacked and Dad’s accounts possibly being at stake I needed to find out what happened. I called our computer people, left a long message, and then went back to Hospice.

I told uncle about it and there was a gentleman named John from Dad’s church visiting.  I didn’t have time to stay so apologized for rushing in, but it was very nice to meet him.  He just seemed like a very nice, genuine person.

He asked me if the pastor had stopped by to see my Dad, I said no.  I did speak the pastor on the phone the other day; he said he would call me back within the hour from his cell phone so I could call him if we decide to have a service for Dad.  He never called, and, he never went to see Dad either.  This pastor was someone Dad talked about all the time as being his friend; they went to the same college and had other things in common.

I left the room, ran into Reluctant Heart and got into a strange conversation where he suggested things but knows NOTHING about computers.  I was in a huge hurry and needed to find out about Dad’s accounts.  I was looking in the phone book when he suggested Best Buy and their Geek Squad.  It would absolutely devastate me if something happened to Dad’s hard earned savings and I somehow had been part of it.  OMG!

So, off to Best Buy we went, me and my huge laptop computer and some poor unsuspecting employee behind the desk.  I tell him what happened, and that my Dad is on his deathbed, I ask him if there is a secure connection I could get anywhere I am terrified Dad’s accounts may have been harmed.  He was gracious and kind with this crazed woman in front of him.  They don’t usually do this, but he allowed me to connect via their secure network so I could check things out; Dad’s accounts were unaffected, thank God!

I was concerned about a virus installed or anything like that; he said it’s not likely…so, we didn’t know the cause, but it seemed to be specifically tied to my American Express card.

Greatly relieved, Richard and I grabbed a bite to eat and head back to Hospice.  Upon returning I let my uncle know there’s no virus, no key logging software or anything of the malicious sort.  Uncle said the Reiki therapist was in and gave Dad a treatment, they checked his vitals before and after and it showed he was more relaxed afterward.  How cool is that?

Shortly after, uncle left for his hotel, Richard stayed for a little while and then headed to his motel early.

Alone again with Dad, after an exhausting ordeal, I didn’t know how much more of this I could take.  I sat there in the window seat looking outside; my heart was dark and cloudy.  This has been one of the most painful events I’ve ever experienced.  In my spiritual life, I have been listening to teachings on abiding with the emotions, staying with discomfort, going to the places that scare you.  I was at that place, but, also way beyond exhausted.

Richard would be leaving for home first thing tomorrow morning to check on the house and animals, and return Monday or Tuesday.  We’d already been gone longer than either of us packed or planned for, and I too, longed for home, my animal family, the quiet, my own bed.  Uncle would be leaving the morning of Saturday, April 27th for home too.

Dad’s breathing is far shallower.  This is such a strange place to be.  I was far more comfortable being by his side years ago in the hospital, watching him improve.  Now, I want him to suffer no more and I feel at odds with myself in this very moment.  There comes a time when the pain and fear of not wanting a person to leave is overridden by an even more intense pain of not being able to bear seeing them suffer.  I made a promise to him I’d stay…

Weary and worn down, jagged pieces in my heart were rubbing together causing nothing but pain.  I had seen too much of the unkindness in my own family, too many excuses, and yet, relished the remarkable kindness in the eyes and hearts of staff and strangers.  I didn’t know how much longer I could do this but didn’t want Dad to die alone.  I had to stay or live with the regret.

Just then, a staff member leaned in the doorway and said, “I have a question for you.”
My numb heart and mind said, “Okay”.
The gentleman said, “These ladies would like to come in and sing for your Dad, is that okay?”
Numbly, I nodded yes.

The three dear ladies gowned up and put gloves on, came in to the room and sang simple choruses like all is well and sweet stanzas of peace.  They were gracious, respectful and otherworldly, they thanked ME for letting them come in and sing to my Dad.  I think they were angels.

The hardness in my heart melted and I cried at the beauty of what had just been my darkest, most difficult moment.  Yes, they must have been angels.  They said they extend the same peace to me.  I thanked them.

I dried my tears and continued to watch and listen to Dad breathe.  I don’t know how much time passed from their singing, but while I watched, I saw Dad with his eyes still closed appear to be talking to someone with whom he was very familiar.  I wondered who would be coming for him…

Exhausted, sleep came quickly and easily for me.  I had put my earplugs in as I usually do but was awoken around 2am by the nurses being loud.  I was mad and sleep deprived!  They were making too much noise and I was strangely cold too, I had gone to sleep comfortably warm.  (I know they didn’t change the temperature in the room overnight).  I sat up on my elbows and looked at Dad as I’d always done.

Just then, a nurse came in and said, “I think he’s passed.”
“Really?”  I ask in disbelief.
She said she’d get a second nurse to witness, but yes, she believed he passed away around 2:05 am.  I was stunned, sad, and flooded by a myriad of emotions when I realized he was really gone.

The nurse that told me Dad had passed brought in a single electric candle stick she plugged in at the window, I thanked her.  The sweetness and thoughtfulness every step along the way touched me deeply.

Not knowing what else to do at the time, I lingered, placed my hand on Dad’s forehead and said, “Bye, Dad.”  I was glad for him, but profoundly shocked, empty and sad.  I wondered if his spirit lingered in the room before departing, like I’ve heard of many times before.

The nurse asked for time to get him ready and I went into the Living Room, where I called Richard once I gathered my senses.  Richard couldn’t sleep and had already left town to go home!  He was two cities away; he said he’d turn around, bring oatmeal for me from McDonald’s, and come back to Hospice.

Left to myself, I cried.  It’s over.  Dad’s suffering is over; ours is just beginning to take a different form.

I thought of a lot of things those first few hours.  We think we’ll be surrounded by loved ones when it comes our time to cross over, only because we’ve seen it on TV!  Truthfully, I bet it rarely happens.  We think of those people who we’ve been faithful to, oh sure they’ll be there for us, but we really don’t know until that moment comes.

Maybe people show up out of guilt because they hadn’t kept in touch with you – a lot more of this path seems to be about them rather than the one dying.  Weird, huh?

I got to be with Dad the whole time; I was encouraged to take breaks as much as I needed.  I guess this is where PTSD becomes a friend…my heightened state of awareness was actually a good thing.  I was getting by on little sleep but I did okay.  Everyone was telling me I was doing well (outside of one brother and uncle).  This was one of those life moments failure was clearly not an option.  This is my Dad!

I stayed because I promised although my stomach was in knots most of the time, and, the physical hurt in my heart was intense.  I felt that pain must be normal, because to me, this was severing of a relationship, an ending of an era.

While waiting for Richard to arrive, I wandered in and out of Dad’s room.  By now, the candle was the only light in the room, and, he had a beautiful handmade quilt covering him.  How beautiful.  My eyes could barely believe it.  Volunteers, I’d imagine, sewed the masterpiece that covered his lifeless body.  Love in the beginning, love in the middle, love in the end.

I decided it was about time Richard should arrive, so left to get some coffee in the family kitchen and just wait, try to wake up, but wait.

I then made the phone call everyone dreads.  I phoned Rebel Heart first, Religious Heart (left a message on his cell phone), and then Reluctant Heart.  I thought our uncle might wish to see Dad so asked the nurses to please wait a little while before Dad is moved from Hospice.  It turned out I was wrong, none of my local family wished to see Dad.

With everything going on, it didn’t dawn on me how off base Rebel Heart’s words were about Dad’s will when we spoke in the wee hours of Friday morning.  He’d asked if we all get together and the attorney reads the will.  I laughed and said I think that only happens on TV!

With those phone calls done, I had to decide what funeral home the nurses should call to come get Dad.  I went with the one he’d purchased a cemetery lot for himself.  I thanked the Hospice staff, Richard and I left to get something to eat.  It was over.  Dad was free.

We decided I would go back home with Richard, I was past due needing a break, my brain was thoroughly fried, and there wasn’t much we could do there with it being the weekend.  I spoke with the Funeral Director over the phone during our drive back and answered questions.  I also let my family know we were going home.

We did the delightfully uneventful and blissfully quiet 12-hour drive back home.  It is good to be home, out of the stress, traffic, unfortunate attitudes, judgment, etc.

I stood outside with the horses and just listened…the loudest sound here is not traffic, but the birds singing, the wind, and the faint sound of traffic a ways away.  It’s good to be home.  I’d imagine Dad feels the same way now too.

Posted in Aging, Anxiety, brain fatigue, Decisions, Family, Grief, Lettiing Go, mTBI, Personal Growth, PTSD, Sadness, TBI, Traumatic Brain Injury | Tagged , , , , , , | 16 Comments

Day 8 with Dad (Wednesday, April 24, 2013)

Day 8 with Dad (Wednesday, April 24, 2013)

We are growing wearier from our vigil in that small room.  Uncle told me I missed out on the harpist who came in and played for Dad earlier today, he said it was really beautiful.  I was glad for that.

We take breaks, we eat, we hydrate, but none of it seems enough.  We can’t hold out for much longer.  My uncle said I might just be in this for the long haul.  I nodded in agreement and said, “That very well could be.”

We’re already all so beyond exhaustion…

Posted in Aging, brain fatigue, Family, Grief, Lettiing Go, mTBI, PTSD, resiliency, Support, Traumatic Brain Injury | Tagged , , , , , , | 8 Comments

Day 7 with Dad (Tuesday, April 23, 2013)

Day 7 with Dad (Tuesday, April 23, 2013)

Early this morning Reluctant Heart unexpectedly stopped by on his way to pick up uncle at the airport; we hadn’t really gone back to speaking terms so I’d not told him about the epic voicemail from uncle.  Being protective, Richard mentioned it to him, much to my surprise Reluctant Heart said that wasn’t appropriate and he’d say something.  Wow.  OMG.

In the early afternoon uncle and Reluctant Heart arrived and uncle apologized.  He offered to take me out to dinner, but declined because I was there for Dad and didn’t want to leave…Dad might just sneak out the back door on us!

Things were okay, tense, but okay.   I don’t know how you can really rebound from something like that, but I had to stay focused.  Perhaps Brain Injury has taught me how to find a way through in the toughest times, maybe it’s just survival, I don’t know.  I do know something far greater than any of us was taking place and I knew I had to keep it together and see Dad through.

With uncle and Reluctant Heart visiting Dad that allowed me time to research a couple of funeral homes and make some calls.  This is a time I wish I was well-versed in these things, it’s like me first learning to speak latte, definitely a whole new language. 

Pre-need?  What?  I have to talk to a Funeral Director and a different person to discuss the burial?  We have to go there and flag the site?  Dad has owned the plot for 30 years, they should know where it’s at!  Paperwork?  We have to sign paperwork?  Who needs to sign it?  Church services?  Dad never talked about a funeral, he just always said he would be buried next to Mom. 

I took notes but I know it’s over my head, too much to learn.  I call one funeral home that the Hospice Social Worker mentioned doing a lot of work with.  They are compassionate and kind, far different than the place Dad has his plot at. 

This is all so weird.  Dad is still alive and we’re talking about a burial, funeral, and Hospice will need to know who to call to come pick up the body.  Body?  That’s my Dad!

I manage to function pretty much in spite of my family.  This is old hat…my family has never ‘been there’ for themselves, how in the world could they be there for me or Dad?  My family is impotent at relationships.  There I said it.  I see flaming character defects in my family and in myself and I want to be anything but who I am right now. 

Rebel Heart brother calls to tell me he won’t be there after work like he promised.  Okay, uh, why are you telling me this?  I said to come anytime; Hospice is open 24/7.  He then proceeds to tell me he got a tattoo of Superman with our Dad’s initials because in a previous conversation there was reference to Dad being a hero.  Hmm…I feel like a hypocrite.  I talk to him, listen to what he has to say, but it doesn’t sit well with me.  What am I supposed to say?  Seriously!  Dad is dying and you can’t find a way to be here?  But, you have time to get a tattoo?!!  Whatever.  Clearly my nerves are wearing thin.

And, in the forefront of my mind is another mental mind bender: I was speaking to the person who unleashed his terror and violence on me growing up.  Twenty-five years ago, we don’t keep in touch, being a family is merely a formality.  I’m sorry, but to be true to myself is to have nothing to do with him.  Those nightmares still surface for a reason.  Yet here I sit conversing with him…wow…it’s all so…fake.

I get off the phone and tell Dad that he and I aren’t all that much different, people just don’t have time for the dying or the disabled.  Pretty sad.  Even Religious Heart can’t make it.  He’ll be here for the funeral, though.  Wow.  By this time he, his wife and two sons have said their good-byes to Dad over the phone. 

I don’t want to be a hero, I don’t want to be a leader, but that is my old role in the family and who am I to expect anything else?  The women always did EVERYTHING and the men just showed up.  Much to my surprise, my brain is almost functioning like it used to, and that feels good.  I miss my old, high functioning self.  I miss that edge, but, like Cinderella, I know my carriage will turn into a pumpkin far too soon.  It can’t last.  It never does.  And, there’ll be hell to pay when I finally hit the cold, stone wall of debilitating brain fatigue.  Richard expects me to be in recovery for at least a week. 

I’m being looked to as the leader of this whole deal, holy cow!  Don’t follow me; I don’t know where I’m going or what I’m doing!  I’ve never done this before. 

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Day 6 with Dad at Hospice

Day 6 with Dad (Monday, April 22, 2013)

Continuing to witness Dad’s health’s decline, the watching and waiting, the hyper vigilance is exhausting, but time is a gift, even now.  My brain is beginning its own slow decline.  I’m meshing words together, my brain is tired, but I have to keep it together a little longer.

I spoke with the Social Worker; she came in, sat down, gave me some handouts to read and let me ask her some questions.  This was the first time a Social Worker was younger than me.  I asked how she learned all she had at such a young age.  She said she had some great mentors and she loves her work.  Wow.

She was very sweet, low-key, gracious, empathetic and helpful.  She said they have some wonderful volunteers and if I think Dad would benefit from music therapy, let her know and someone would come in, there’s no charge.  She said the same about massage therapy too.  So, I signed Dad up for both.

Posted in Aging, brain fatigue, Family, Health, Lettiing Go | Tagged , , , , | 1 Comment