Facing my dad's dying days: Hi all, I... - Advanced Prostate...

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Facing my dad's dying days

Green_Guy profile image
44 Replies

Hi all,

I feel like my mind has been spun around and now is facing in a totally new direction.

This past week, my 98-year old dad completed his radiation treatment. Things felt very hopeful. His pain level has been way down ever since he was diagnosed with the cancer just over a month ago. The drugs and treatment have been doing a good job with that. He mostly been sleeping, but recently he's been doing better and he's been getting around, sometimes even without his walker.

My dad was mowing his own lawn a year and a half ago, using a mower that even I struggled to start and push. But he slowed down a lot and then became dependent on his walker since mid-January when he became constipated and very weak. Since he started getting better recently, he has tried to do some crazy things like go out driving. Fortunately, he hasn't driven since early January and the car battery was dead.

Then on Friday afternoon, the hospice intake nurse came to visit for the first time. Coincidentally, my dad's appetite had dropped off dramatically that day. He'd had struggled to eat at breakfast and then hardly touched his lunch. Up until then, he'd been eating well. His low point on weight was 87 lbs in early March, but with his improved appetite, his weight has come up to 95 lbs.

The hospice intake nurse spoke to me about juicing, and with my dad's continued lack of appetite, I decided to spend $500 yesterday morning to buy a juicer. I had been calling the hospice hotline every day since he started on hospice care on Friday. It's barely been 4 days.

Then yesterday morning, my dad's case manager and regular hospice nurse (same person doing two functions) came for her first visit. After assessing him, she said that it looked like my dad had started the dying process. She said instead of waking him up to eat, I should just let him sleep....only giving him food when he wants it. She mentioned one patient she had who slept for 23 hours and was up only one hour for getting nourishment.

Then in the afternoon, I had to take my dad to Kaiser to get his blood draw. We are meeting with his oncologist today for the second time. He had to get his test to see where we are on his PSA.

My dad got an MRI on 3/9 to figure out what was causing his lower back pain that had been bothering him for a while. Instead of some pinched nerve diagnosis, that same afternoon, my dad's primary care doctor called me to say that the MRI showed metastasis on his spine. Blood tests were done and showed that his PSA level was 3395 - let's just call it 3400. With the diagnosis, the doctor prescribed oxycodone for his pain.

In our initial appointment (video) with my dad's oncologist on 3/17, she expressed surprise that my dad was still able to get around on his walker. So she wanted to start treatment immediately. An hour later, he was getting his lupron injection (lupron wasn't available, so they used the substitute).

On 3/21 we had our initial visit with my dad's radiation oncologist. Then he got the CT scan and simulation. On 3/25 his radiation treatment started (so fast! - I think it took at least a full week between my simulation and first treatment when I got this done back in 2017). My dad received 10 treatments, and the last one was done 4/6. I understood that should he survive, my dad would start feeling more energy in 2-3 months.

On 3/30, I messaged my dad's primary care doctor, asking that with my dad receiving palliative radiation, would he eligible for hospice care? She deferred this decision to my dad's oncologist. So when I inquired with the oncologist, she responded:

"Your father may be qualify for hospice care, given his age and disease burden.

However he just started treatment, I would not like to give up that easily.

Please give him at least 2 months, before we rush into a quick decision.

However if you need additional support, we could start hospice care now but continue with all treatmen, if he improves, we can cancel hospice care, if he continue to decline, then continue hospice care.

Do you want to start hospice care now or wait for a few more months?"

I responded:

I would like to start hospice care now, and we can stop it later, if it is warranted. I would appreciate the support that hospice offers. I learned about hospice when I was my mother's primary caregiver. In the end, she had hospice care for less than 1 week, and I did regret that we didn't get it sooner. In her case, it took longer as I wanted a nurse that spoke Japanese.

-----------

So now, I am glad that I made the decision to start my dad on hospice care. It seemed like it might be premature as his oncologist suggested, but in fact, it seems like we may have started receiving care just in the nick of time. I still hope that my dad may make some miraculous recovery, but I am not expecting it. I am choosing to accept the advice of my dad's hospice care manager and just let him sleep, and not wake him up to eat. I have some mixed feelings about this, but it seems like the right thing to do now.

My dad is not a verbal or expressive person (unlike my mother, who managed to handle about 80% of the verbal communication in our family when she was alive and well). He mostly corresponds with friends and family through his annual Christmas cards. So I haven't notified these mostly far flung people of my dad's condition....except for my retired surgeon cousin in Japan, who I've been in contact with since my dad became constipated on 1/12/22. I've been telling some of my closer friends about my dad, and also my small support groups at church.

Last night, I started calling some of my dad's distant relatives (like my cousins in Hawaii and Oregon), to inform them that my dad has stage-4 prostate cancer and that I've started him on hospice care. My dad doesn't have any more living siblings. I've decided to ask folks not to call, but instead ask them to send him cards and letters. I think being on the phone would take up too much of my dad's energy. Whenever someone calls, he hardly says anything, just letting the other person do all the talking.

I plan to make some more calls today to my dad's friends. I still want to volunteer this morning at one of the local soup kitchens I like to help at. Then there is a place called the Recovery Cafe that I recently joined that I want to take a class at. Then we have the video appointment with my dad's oncologist later in the afternoon. There is also a meeting tonight for San Jose Nikkei Resisters. It's a relatively new social justice organization that I joined in 2020. I want to bake some pecan bars today to take to the meeting. So even though my dad is my top priority now, I am still making time for myself to do the things I like to do.

We'll see how things go...just try to take it day by day.

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Green_Guy profile image
Green_Guy
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44 Replies
Javelin18 profile image
Javelin18

I can feel your love for your father, and the difficulty of choosing between hospice and active care. The two have somewhat opposing goals, with hospice care focused on easing a person's passing, and active care trying to prevent it. It sounds like you have found the right balance for your family.

When I faced these decisions with my father, I found it helpful to think about his full life, rather than his current condition. I wish you strength and peace during this time.

Green_Guy profile image
Green_Guy in reply to Javelin18

Thank you, Javelin18.

treedown profile image
treedown

As sad as this must make you feel he has had a long life at 98 and you never know he could still rally. It sounds like your handling this very well and he is blessed to have you. I am glad you are also taking care of yourself. Be well.

Green_Guy profile image
Green_Guy in reply to treedown

Thank you, Treedown.

Boywonder56 profile image
Boywonder56

98 years ...we should all be as lucky.....time to let go.....to keep him around for you...is not fair to him....he should of had a living will....we need to go out on our own terms.....not being gold or heartless...just being me....☘️🇺🇦

Shooter1 profile image
Shooter1

Hospice is a God sent for the family. They not only help with his care, but can also help you. One day I will be needing them and I plan on starting as early as needed to help my wife and kids be relieved of some of the work load with a dying spouse, father and grand parent. They have all been appraised of my condition as an end stage cancer patient so no surprise there, just up date to keep up with my condition. I like your dad am blessed to have loving family to help out.... Bless you and good luck to you and your dad.....

Green_Guy profile image
Green_Guy in reply to Shooter1

God bless you, Shooter1. I also don't want to be a burden on my family or anyone for that matter when it's time for me to go. I even think of maybe assisted suicide which is possible in my state now. Also want to be cremated and have my ashes scattered someplace so nobody has to worry about coming to visit my grave. Best wishes to you and your family.

j-o-h-n profile image
j-o-h-n

You are the apple that fell from the tree. May your dear DAD surprise everyone and make it to 110. Please give him my regards and tell him this is a little of the Japanese that I know. My Japanese nickname is Saru san.

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 04/12/2022 11:07 PM DST

Green_Guy profile image
Green_Guy in reply to j-o-h-n

Haha Saru San. Are bananas your favorite fruit? I wonder how you came to have a Japanese nickname. BTW, my dad, born in Hawaii was around when Pearl Harbor was bombed. He saw the Japanese planes. He went on to volunteer and serve in the US Army. He served in the MIS (military intelligence service) as an interpreter. That experience changed the arc of his life. He went on the get his BA and MA at Univ.of Michigan on the GI Bill. His elder brother on the other hand, was caught in Japan for the war. He had been at a university there. My father continued to serve in the army after the war and went to Japan as part of the occupying force. There he found out that his brother died on Bouganville of malaria, while serving for the Japanese Army. What a life.

j-o-h-n profile image
j-o-h-n in reply to Green_Guy

Many years ago I had a Japanese girlfriend.... She called me that (hopefully in a loving way). Not only do I like bananas you should see me climb trees and I can cover my eyes, mouth and ears all at the same time. 🙈, 🙉, 🙊. In broken Japanese, I can say "good morning how are you?" and "telephone" and "hello" when answering the phone.Here I go "ohio go zani mas sou". "denwa" "mushi mushi".....

Bless your dear Father for being a true hero in WWII. He worked hard during hard times for all Americans especially those of Japanese decent and of German and Italian decent. As you well know the Japanese were treated badly especially since you could tell an Asian person from a Caucasian person. I tell every one I'm Asian, e.g. CaucASIAN.

Must have been a sad time when your Dad found that your Uncle had passed of malaria in New Guinea. Brother fighting brother.... We presently are experiencing those same terrible days with Russia's so called invasion of the Ukraine.

Tell your Dad that he will be around until he's 110 so he better behave especially with the young women unless you want a kid brother. God Bless him and you too for being a great and loving son.

Sayonara.....

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 04/13/2022 12:17 PM DST

GoBucks profile image
GoBucks in reply to j-o-h-n

Hey, I live in Ohio. So you say Ohio Ohio?

j-o-h-n profile image
j-o-h-n in reply to GoBucks

Ohio = Good morning in Japanese.....You call that living in Ohio?.......... I know more than you think I know about the buckeye state......

(🎵I don't give a damn bout the whole state of Michigan 🎵 )

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 04/13/2022 6:01 PM DST

GoBucks profile image
GoBucks in reply to j-o-h-n

We've had a good chat in the past. I know about the player we can't mention and of course the woman we can't mention. Unless we add her to the the song....We dont give a damn about all the ex family....

j-o-h-n profile image
j-o-h-n in reply to GoBucks

I can't remember anything.......I'm really having difficulty remembering my anniversary date. Wait a minute..... I never could....

Simple words escape me..... today I couldn't remember the word "brass"....Did you know that the metal polish Noxon has been discontinued? I used that polish by the ton.... Funny thing I looked up good metal polishes to replace noxon. One site mentioned Brasso but they said it wasn't good for brass....(LOL)....I used to use Brasso in the service to shine up all my brass (in fact I think everyone did). Live and Learn... Take care and remember oHIo....

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 04/13/2022 6:24 PM DST

Green_Guy profile image
Green_Guy in reply to j-o-h-n

LOL, Saru San. I hate to correct you, but for good morning, it is Ohayo (or Ohio - close enough) gozai masu. And moshi moshi when answering the phone. I think you probably know thank you. Arigatou gozaimasu or simply Arigatou. And your welcome is "do itashi mashite" or in American - 'don't touch my mustache.'

Regarding my dad's WWII experience, you may be interested in seeing this recently made documentary by Minnesota PBS.

pbs.org/video/armed-with-la...

My dad, Toshi appears at around the 3min, 21-23min, and 45-47min marks in the program. He was one of many interviewed for an oral history collection of Japanese American veterans, and they used excerpts from his 2010 interview.

j-o-h-n profile image
j-o-h-n in reply to Green_Guy

Thanks for the corrections..... now let us try Greek..... Kali Merra (Good day), Tea Kanis (What are you doing?).....Spelling phonetically. BTW don't touch my goatee...

That's wonderful about your Dad being interviewed he will always live on...... When I have some time I will watch the documentary. Question remaining why Minnesota PBS I would think it should have been San Francisco or L.A.

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 04/13/2022 11:06 PM DST

Green_Guy profile image
Green_Guy in reply to j-o-h-n

So are you Greek, or did you have a Greek girlfriend? Are you/were you married?

Good question. Minnesota PBS made the program because the soldiers that were enlisted in MIS went to language school at Camp Savage in Minnesota before going on to basic training. At the language school, they were tested and sorted out according to their language ability. The name of the program is "Armed with Language." There was a focus on Camp Savage and that experience, but it also went through the general experience of the Japanese Americans during the war, so the things you mentioned about Japanese being interned, etc.

The funny thing was, we had no idea about the program being made, and only found out about it through sheer luck. Some background. I belong to Wesley United Methodist Church in San Jose, which is a historic church, that has its roots in serving the Japanese community...it's in San Jose's Japantown...one of 3 Japantown's still existing in the US...been going there for about 25 years now...my wife wanted to raise our son in a church...neither of us had a religious upbringing, so we looked around...even checked out the Buddhist Temple in San Jose...but we settled on Wesley because we liked the community and children's program there.

Anyway, one of my friends from Wesley sent out an email to a number of us, with a link to Armed with Language. It was because her sister in Minnesota was in the program. My friend's father had served in MIS, and we had talked about it before. I was very depressed at the time my friend sent me the email, and I also knew enough history that I wasn't particularly interested in the program. Nevertheless, I decided I'd just scan through the program. As I started watching, lo and behold there appears my dad. Whoa.

Now as I mentioned before, my dad is not a verbal or expressive person. I was there when he was interviewed by the Go for Broke Foundation that interviewed all the Japanese vets. (His interview was back in 2010, and Minnesota PBS took exerpts from his interview to put into their program. ) Honestly, I thought it was the most boring interview. For over an hour my dad mostly talked about history - stuff you could read out of a book, with very little personal stories. It was as if he had prepared for the interview by reading a book. But to their credit, Minnesota PBS took the most interesting parts of my dad's interview (when he was at Pearl Harbor, about going to Japan after the war, finding out what happened to his elder brother, etc).

I have a dear friend at church. My friend Alice will be turning 90 this November. Her husband Kats passed last October. He would have turned 98 on 1/22/22. So he was about 2 months older than my dad. Kats was a great man. Like my dad, he was a man of few words, but he did speak more than my dad. He was also quite a bit more social. He went to church, he got around. My dad is pretty much a home body. Anyway, Kats grew up in California. His family was sent to camp during the war. He volunteered. He fought in the 442nd battalion. He almost lost his life, and spent about 2 years in rehab after the war. He went onto Stanford and became and engineer. Worked for GE and Lockheed after that. Raised a great family with his wife. His interview was about 3.5 hrs long. I watched all of it, and it was all good. I knew of Alice and Kats ever since I joined the church, but did not really talk to them until i joined a small group Bible study they had been in for 50 years (!). I was the youngest person in the group and it was amazing for me to have all these wise people to learn from. Alice was the best. She didn't talk that much, but I found whenever she spoke, her words were golden. I gravitated toward them, and became close to them. Now they are very near and dear to my heart. Kats is gone now, but I treasure the time I was able to spend with him. And I look forward to spending many more years with Alice as my friend.

Alice sent my dad a birthday card in March. She came to visit us for a bit after that. I've been to her home many times, but it was the first time she came to my dad's place. She spoke kindly to my dad. I think he appreciated it. Now I have a photo of the two of them that I have as a nice memory of that day.

Sorry to write so long. I think that it would be better talking to you.

Bluebird11 profile image
Bluebird11

You have to follow your instinct l. Because of pain meds which may cause more slope I would tent to wake him for some warm nutritious soup. The meds may cut his appetite. His amazing PSa number just shows me that he is still functioning with that number. We did not have a good experience with hospice. I like the intention, living longer in hospice instead of complacent they will die soon. My husband’s death in hospice was hastened by their attitude he was dying.

Trust your instinct. Each person is different.

Green_Guy profile image
Green_Guy in reply to Bluebird11

Thank you, Bluebird11. I am sorry about your husband. My dad's PSA from his blood draw on Monday was down to 236 from 3400. But his RBC and WBC were significantly down. Unfortuately, the burden of the disease appears to be too much. It doesn't seem like his body will have enough strength to get better. I want to honor my dad's wishes. If he doesn't want to eat, I don't want to force him, just because I want him to get better. Now a primary concern is that he not aspirate. We also discussed crushing his pills and maybe mixing them into apple sauce. I talked about apple sauce with my dad. He said he would eat some of that warmed tomorrow.

BigTex3 profile image
BigTex3

I’m sorry to hear about your Dad but what a great life. I’ll pray for your family to have God’s peace and comfort. He’s lucky to have your to be with him as he nears the end.

Green_Guy profile image
Green_Guy in reply to BigTex3

Thank you, BigTex3.

Yank66 profile image
Yank66

Hospice was a godsend when my parents were I’ll and facing their last days. They even offered music therapy which my mother loved. God bless you and your family. It is such a hard time.

Green_Guy profile image
Green_Guy in reply to Yank66

Thank you, Yank66. Wow, music therapy. That is so cool. I wonder what they did for that. My best friend from college has a daughter that got her degree in music therapy at the University of Pacific, here in California. Now she is getting her masters in Iowa for music therapy. I think she will be a wonderful music therapist. I never pictured her helping others in hospice, but now know that there can be that opportunity. Thank you for sharing that.

Yank66 profile image
Yank66 in reply to Green_Guy

A hospice volunteer brought her guitar into the assisted living facility and played old songs with my mom. They sang together and my mom, who had Alzheimer’s disease, knew every word. She loved it. It was such as success with her that they opened it up to anyone who wanted to participate. Soon there was a large group singing You Are my Sunshine, God Bless America, etc. it brought everyone such joy.

Green_Guy profile image
Green_Guy in reply to Yank66

Wow, that sounds amazing. I have read before that Alzheimer's patients and others with memory loss can recall songs. Apparently they are very deep seated memories...I think my friend's daughter has many stories like this. It's wonderful that this volunteer was given such a gift that she could share with others.

dadzone43 profile image
dadzone43

You have made a kind and loving choice.

Green_Guy profile image
Green_Guy in reply to dadzone43

Thank you, dadzone43.

Luv2fish profile image
Luv2fish

So sorry for where you are at with your dad. So sending my hugs thoughts and prayers first and foremost. I have a couple of suggestions for you - 1) read Ira Byock’s books “dying well” and “ the four things that matter most”, and 2) when you talk to friends and family about your dad, ask them to send you their favorite funny story about him, favorite memory, or what he means to them. Basically, ask them what would they want to share at a celebration of life. That way you can read those stories to your dad while he’s still alive. I did that when my husband was in hospice in 2020 and it was one of the very best things I did. So many of the emails I received left me thinking how sad I would have been to have heard them at a celebration of life when he wouldn’t be able to be there and hear them. Sharing them with him can be a beautiful experience for both of you. Again, sending hugs thoughts prayers peace strength and grace your way.

msnik profile image
msnik in reply to Luv2fish

hello Luv2fish, what a wonderful idea you have about gathering stories. Green_Guy, your father had an amazing life. All the best to you and him

in these difficult days. Did he like flowers? If so, perhaps you can put some

near him so he can smell them even if he is sleeping.

Green_Guy profile image
Green_Guy in reply to msnik

Thank you, msnik.

Green_Guy profile image
Green_Guy in reply to Luv2fish

Thank you so much, Luv2fish (luv that name...I wanna know where you like to fish, and what kind of fishing, fly, spin casting, deep sea, etc :) 1) My closet library branch is about a mile away and I ordered a couple of Ira Byock's books. They have Dying Well, but not the second one you mentioned...they do have another one. I also ordered a couple of other books on dying that came up on the same search. I liked Being Mortal by Atul Gawande. I read that a few years ago, when my dad was still doing fine. My retired surgeon cousin in Japan who just turned 74 today, suggested that both my dad and I read it. I did, but my dad wasn't interested. I have been meaning to re-read it, but I already have too many books that I am reading, that I have not been able to get to it. Honestly, I just haven't found time to read much, period. (2) I copied and pasted what you wrote and have emailed it out. Thanks again. God bless you.

Hailwood profile image
Hailwood

What a terrible time, but please ensure that relieving him of all discomfort is the priority.

Green_Guy profile image
Green_Guy in reply to Hailwood

Thank you, Hailwood.

spencoid2 profile image
spencoid2

You have done all the research gotten all the opinions and are making the best decisions for your father whom you care for dearly. Best wishes and good luck in dealing with whatever comes up. And in the future please remember that you did your very best and do not have any regrets,

Green, I feel your pain. I lost my mother, a WWII Army Nurse in 2019 at the age of 101. No surprise about your mom singing and knowing the words with Alzheimer’s. Officially is was the cause of her death. I loved to tslj about the past with her.

Your Dad sounds a wonderful person as well. The watchword was zero pain with comfort and dignity. As long as he is willing to fight, support him. God Bless.

Gourd Dancer

Green_Guy profile image
Green_Guy in reply to

Thank you, gourd_dancer. OMG, 101. Your mom was amazing. It wasn't my mom that was singing though. that was Yank66's mom.

Boywonder56 profile image
Boywonder56

Gotta love this group....what starts as sort of a bummer / hopeless post brings out the best conversation....i mean who'd a thunk j.o..h.n.......favored a kimona.....but can he say doorknob in japanese.....good vibes to all.....

j-o-h-n profile image
j-o-h-n in reply to Boywonder56

You reminded me of: "Ramona, close your Kimona, you give me a Boner."

Doorknob in Japanese is either PUSHey or PULLey......

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 04/13/2022 11:23 PM DST

GoBucks profile image
GoBucks

I just went through hospice care with my 102 year old Dad. He loved music from the "old days". When we thought he was having a bad day, he woke up for his visitor who sang old songs with him including his favorite, "It had to be You". Wishing you & your Dad peace and strength.

Green_Guy profile image
Green_Guy in reply to GoBucks

Hey there, GoBucks. Thanks for the well wishes for my dad. Please don't hold it against him, but my dad went to Michigan (Go Blue!). I don't know how old you are, but I am 60. I remember watching games with my dad when I was kid. Woody vs. Bo. USC was in there too with John McKay. I went to Cal for college, and we didn't like SC and Stanfurd. OSU has had some good teams lately. So you must be happy about that.

garyjp9 profile image
garyjp9

Blessings to you and your father. I am sure he realizes how fortunate he is to have you, as are you to have had him for all these years. May this stage be as peaceful and painless as possible.

Green_Guy profile image
Green_Guy in reply to garyjp9

Thank you, garyjp9.

cancerfox profile image
cancerfox

This reminded me of when my mother was in hospice care for cancer. Hugs to you, my friend.

Green_Guy profile image
Green_Guy in reply to cancerfox

Thank you, fox.

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