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Now at home with Hospice
Posted: Saturday, June 1, 2019 4:23 PM
Joined: 9/8/2017
Posts: 2324

Dad looks good.  Maybe too good.  The caregiver said, maybe the attack did him some good because he seems nicer (she was just joking).
Since returning home with hospice, I've met with the assessment nurse and the nurse who'll be visiting weekly.  Next week, I'll meet with the social worker and bath aide.  So far, I like the team.  There is a lot of driving from work to meet with someone, then back to work so I don't fall behind.  The good thing is that my boss and co-workers are supportive.  We all have aging parents.  
After I meet with all staff, we'll just communicate by phone or text.  
I've cancelled some of dad's doctor appointments that were in near future, because it is not necessary to take him at this time.  The hospice administrator might help me to find a mobile dentist just for cleaning his teeth.  But, I think it's out of pocket, so I'll think about that more later.  I don't think it's a good idea to take him to his regular dentist anymore.  Actually, he had an appointment today, but I cancelled that too.

When new people come into the home, I ask if they're allergic to cats, just in case.  The nurse who did the assessment said he was, but he was on medication for it.  Well, it seemed like Cookie understood and decided to hang out with him.  An evil cat, indeed.  I had to pick her up and throw her away.  It just seemed odd that she would do that to someone who's allergic to cats.  She normally doesn't do that....weird.

Since my father's attack, I'm on alert.  Hopefully, hopefully, it doesn't occur again. 

I'm trying out (not for me, but for dad) the diapers and chucks provided by Hospice.  My sister said she thought the diapers were poor quality, but I think we just have to get used to them.  However, I'll keep stock of his usual depends and other stuff just in case we run low or for whatever reason.

For some reason, I feel like I'm in a different atmosphere since the incident.  In a different world.  I don't really know how to say this, but it almost feels like I cracked the door open for a new path.  The path to the end.  The door is just slightly open, but the aura of death is faintly around us.  Must be mental.  And, I'm still trying to settle down and relax.  

The good news, dad does not appear affected by the attack.  He still laughs.  And, yesterday he argued with me about who knows what while I was trying to talk on the phone.  I think he expects full attention.




Posted: Saturday, June 1, 2019 9:37 PM
Joined: 3/7/2012
Posts: 1751

A moment of Zen...

Chuang Tzu's Funeral

"When Chuang Tzu was about to die, his disciples began planning a splendid funeral.

But he said: "I shall have heaven and earth for my coffin; the sun and moon will be the jade symbols hanging by my side; planets and constellations will shine as jewels all around me, and all beings will be present as mourners at the wake. What more is needed? Everything is amply taken care of!"

But they said:"We fear that crows and kites will eat our Master."

"Well," said Chuang Tzu, "above ground I shall be eaten by crows and kites, below it by ants and worms. In either case I shall be eaten. Why are you so partial to birds?"


Ruth, mi amor, the aura of death is around us from the moment we are born... Coño, eh? ... All we can do is have our bags ready for the "All-aboard!" Why? Because the camión always arrives at its own chosen time. On-time. All the time.

Meanwhile... Lets sing and dance and drink... ¡A la Vida! To Life!

Posted: Sunday, June 2, 2019 2:48 PM
Joined: 9/8/2017
Posts: 2324

I like the way Chuang Tzu took off to the other world.  Time to plan on this one, talk to his friends and family, then move on, on time.

That's the way to go.  I'm a planner; hopefully I will be allowed to do the same.

Jo C.
Posted: Sunday, June 2, 2019 7:19 PM
Joined: 12/9/2011
Posts: 11564

Ah Ruth; I remember that first time that reality reared its ugly head and I gleaned that things would not always stay the same with my LO and we too were vulnerable.  It changes the picture within the frame just a bit, and we lose some of our "innocence," in a way.  I  couild feel a slight shift of the earth under my feet.

You are doing a great job of managing and getting things together.  Sometimes Hospice provides incontinence supplies, and sometimes they are not as effective; you will soon know.

I am also happy for you in that you like your Hospice team, that makes quite a difference.


Posted: Tuesday, June 4, 2019 9:44 PM
Joined: 9/8/2017
Posts: 2324

Today, by chance,  I met the physician who will be attending my father.    

He didn't notify he would be coming, but good thing I arrived right when he was trying to leave (I told the caregiver to have him wait "I'M ON MY WAY.....AND I'M THE ONE IN CHARGE...HE NEEDS TO SEE ME NOT YOU...." type of thing).

Anyway, good thing we met.  I told him my concern about my father being discharged from Hospice.  And if that is to happen, would he still be his physician? and stuff like that I asked.

….I'm so glad he was frank with me and talked the way I've been waiting for a doctor to talk to me about my father's disease and demise.

I guess he thought I would become tearful and all...

"...I don't want to sound harsh but, your father is going to die and you might find him dead one's all in God's hands....just make him comfortable....he is only going to get worse not better....blah blah blah blah blah....he's just a baby there...and this is no way to live....and no way for you to live...with a seizure he can stop breathing and suddenly die...." (actually, my father seems okay with his quality of life...and he still thinks he's working....and a couple of days ago he asked me if I would like to marry cute). 

I told him it's not harsh at all and I'm so glad we can talk like this.  He asked who his previous Primary was.  I told him I stopped taking him to his Primary because he wanted to send him to a pulmonologist (I didn't care for that), and from there I asked the Home Health mobile physician if she could be his primary.  Well, with Hospice, I cancelled all her appointments too.

We talked about my father's Lupron injections...that his cancer is controlled or whatever.  His next appointment for the Lupron injection would be in November.  

The doctor said, " can stop that too...."  

I said, "I actually wanted to stop all that over a year ago.." but the nurse practitioner made me feel like the Grim Reaper.  At the time, the nurse practitioner said, "..let him die of something else.  Prostate cancer is an awful death...and don't think your father is dying...people with dementia can live a long, long time...." So, we continued with the injections.

The good thing, this physician told me, "...your father is going to die because of the dementia, not because of the cancer.."

I asked him about the rate of growth of the cancer if we stop the injections....he reassured me he'll die before that.  My father's PSA level over the last few years is not even 1.

I'm going to stop the injections.  



Posted: Tuesday, June 4, 2019 11:19 PM
Joined: 1/23/2017
Posts: 1266

Hey Ruthie, I'm not sure if I've ever mentioned this before, at least here in the basement, anyway, but your saga reminded me, so here goes. When Barbara's dad was dying due to system shutdown from cancer, her mom, who had been an R.N., decided ( as she ALWAYS did, ) that she could care - as if she ever understood what caring was - for her husband better than any hospice care team. The man was in pain as he got worse and worse. I mean, real pain ! Barb's mom was allowed to control his morphine drip, and ( really, this is true, ) she let him suffer because she didn't want him to become addicted to the stuff. As if that wasn't enough, because he had been ( prior to the cancer, ) on a lowered sodium diet, she decided that he needed to have NO salt for his food. After that, he declared that his food had no taste, and he stopped eating, and death occurred within a week or so.

You keep mouthing off, Ruthie. Your dad, and the whole community here, is better off because of you.

[ insert Thumbs Up emoticon here ]

Posted: Tuesday, June 4, 2019 11:36 PM
Joined: 9/8/2017
Posts: 2324

OH thx Chris.  I went back and corrected some poor grammar or misspellings….sorry you got to see that...anyway...(it's probably still off but at least you understood/understand what I was/am trying to write.

Oh, that's so awful about your father-in-law.  Oh, I'm all for a comfort death if any way possible.  I remember when my mom died, she actually looked pretty.  She never thought she was good looking, but I told her..."hey, you look pretty good there..."  

Anyway, we did give her morphine.  It was a scary night the first night back home. She passed just two days after we left the hospital with Hospice.  That weekend, Hospice was busy and my mother was suffering.  I wasn't allowed to give her the morphine until the nurse came, but she was taking so long.  I kept calling while my mom was begging me for it.  It was awful.  Finally, the nurse came and there we went.  There is so much I can write about all that.....but, to make this short...the very end was ok.  The sad thing is, she was trying to wait for my oldest sister who never came.  

At least I was there though.  And I'm glad I was.

Posted: Wednesday, June 5, 2019 11:24 AM
Joined: 3/7/2012
Posts: 1751

Courage. In the time of dementia. And death. These are difficult times for you. And for your family.

My dear Ruth... there are so many things I would like to write... The tap, tap, tap of  thousands of combinations of letters, I will put aside for a moment and have you hear instead the echo of the thump, thump, thump of my heart sending messages of love and comfort to your heart.

Okay... just a few words

(1) How cute that your papi asked you to marry him. I heard my immortal beloved making the same proposal to our daughter. She looks a lot like me when I was her age. I said to myself,   "Splendid. He still loves me!" He no longer knew how to say my name. All he could see was una vieja taking good care of him with tender loving respect. Una vieja, in all her wisdom, being his anchor during stormy weather... But his heart was still young. And I was young in his mind... Lovely... Such thoughts still comfort me.

(2) The doctor was correct when he said to you, "Your father is going to die because of dementia not because of cancer."  When my immortal beloved died at home. Sudden cardiac death. The ambulance people hugged me when I said to them, "Stop. No-more. Do not resuscitate. It is his mandate. His  brain is already dead. Please. No more." The Coroner had to come to the house to declare the death. He also hugged me. And he said to me, " Madame, living with the symptoms of dementia of the Alzheimer's type for 10+ years, it was too much for his heart. Yes. he had a sudden heart attack. But Dementia was the cause of death." For your dad's cancer, keep the morphine handy.  Or whatever painkiller they Rx for him in your neck of the woods.

(3) About corrections to grammar and spelling. Ha! Welcome to the club.  I do it all the time. I'm always clicking on Edit. It comes with the territory of being functional in several languages. I mix English. French. Spanish. All the time. Oftentimes, I make my own words. Ahhh... The beauty of languages. Always changing. And forever evolving with the times. And the regions. And class disparities. Etc.

You are doing great, my dear. Keep your caca together. Because there could be several  volcanic family eruptions.  It happens. En todas las familias.

As our Jim, may he rest in peace, used to say... give your loved one good vibes.



Posted: Wednesday, June 5, 2019 5:13 PM
Joined: 9/8/2017
Posts: 2324

Haha! Thank you w/e! I think I can hold my caca together (at least most of the time I can).  The good thing I believe I’m getting much info. that can help me prepare.  But, I feel after this, I’ll be worn. In other words, “no more of this God please...” but we never know. One thing I do know, my energy will not be the same.  I’m glad you shared your story. Thank you and thank you for the support/valuable advice.  Wow, 3 languages! That’s awesome