Hospice Journey 12/24/21 - 12/31/21 - Advanced Prostate...

Advanced Prostate Cancer

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Hospice Journey 12/24/21 - 12/31/21

JimBarringer profile image

Greetings everyone. This is Jim's third son, Chris, again. I am writing because Dad is in no longer in any condition to comprehensively express his experience. We have seen significant physical decline this week, to say the least. Further, his windows of lucidity are becoming shorter and sparser in number.

Two days ago, during one of these moments of alertness, I asked him whether he wanted me to continue with these posts in his stead. I know that he cares that this community has an honest look into the hospice experience so others can know what to expect and prepare. This concern extends to loved ones and caregivers as well. I took his answer of yes as further affirmation of his continuing intent to help others through this website.

Consequently, this post will be directed primarily at the caregivers - what we are seeing, and steps we are taking to relieve confusion and suffering. It can be bisected into two parts - before moving Dad to the hospital bed; and after.

Last Friday when Dad wrote his post, he was still in his own bed, and in his own bedroom. He had previously expressed a desire to eventually die in his own bed, a place where he had spent significant time together with my mother, and I imagine, where has had had many conversations with our Lord. However, he had become acutely aware of the increasing pain in his most "comfortable" positions, and it was becoming increasingly difficult to provide adequate care on a King-size bed while still attempting to make trips to the bathroom or to use the bedside commode.

Nitty gritty details follow: Bathroom trips had become a three-person affair. Dad, plus at least two helpers. While dad walked from the bed to the bathroom, he would need to be steadied and led, while followed by the other. Someone would have to hold his bag with intravenous medication and "dance" with the tubes to move it around him as he made his way to the toilet. One of the most painful parts of this process for Dad was what he referred to as "docking," - sitting down on the toilet. It is vital at this point to have adequate hand rails and countertops at appropriate heights to assist in steadying him down onto the toilet. His skeleton is littered with tumors, sending nerve pain all the way through his body from any movement or jostling. Absent hand rails or countertops, you can hold his hand to steady him. One time I used too much force, which overtook his ability to stand while holding my hand. I realized I needed to simply steady him, as if spotting someone while lifting weights in the gym. This proved much more helpful to Dad.

The most precarious part of bathroom trips was to follow - making it back to bed, and into it. We would once again "dance" with the bag of medication and its tubes, while maneuvering Dad into a position where he could sit and lay back onto his side of the bed. This also involved himself "inching" his way back up to rest on his pillows, always a painful proposition. The final time doing this was last Sunday, where he got stuck too far down on the bed and no longer had the strength to move himself up. We had a frank conversation about our ability to provide him care in his bedroom, and advised that a hospital bed was in the living room that would lead to more effective care. He agreed and he gathered his strength for "the last dance" to the living room.

The bed in the living room has been outstanding. It's narrow enough to where we can stand on either side of him, and we can raise and lower the rails on the side as well. He has used them for leverage, both while laying down, or standing up after using the commode. Further, the head and legs can raise and lower, allowing us to mechanically place him in more comfortable positions without the need for him to use his strength to do so. While he's still in significant pain, I believe it's less so with the use of the hospital bed.

Dad hasn't left the bed since Monday. We are blessed to have a mother who is committed to providing 24-hour care, while us four sons coordinate schedules to ensure there's always at least one of us present, staying overnight, and ready to help at any given time. Dad's mental acuity has declined significantly in the last few days. I would estimate we've had less than an hour's-worth of true awareness and alertness to what is going on. With that said, it has been fascinating to see where his mind has taken him during this time.

He asked my younger brother where he should put out his cigarette, even though he hasn't had a cigarette since the 1970s. When a hospice nurse was scheduled to arrive, he asked me to check the living room for classified weapons of mass destruction - a clear call back to his days in the United States Air Force. He became genuinely frustrated yesterday with me and my mother, because he thought he had duties or an appointment with the Red Cross, the place where he last worked before retirement. He became even more upset when we couldn't hide our smiles, but it was proudly clear to us his sense of duty was once again overcoming his own personal discomfort. It reminds me of when he broke his arm while playing basketball in the Air Force years ago. He refused to wear a sling on duty because it prevented him from saluting. With his broken arm.

Through all this, the one thing that has snapped him back into the present is prayer. He is no longer initiating it, but becomes acutely aware when others are praying for him. He joined in with me yesterday, and I while I could not comprehend the words coming from his mouth, I knew that God could, and that God could also reading the subtitles on his heart.

I've also come to realize for the first time that Dad is very tactile, in that his hands unconsciously fiddle with things in reach. This is ok when it's the rails of the bed or an offline cell phone. It's less ok when he tries fiddling with the tube routing intravenous painkillers into his body. He likes to hold my mother's hand for long periods of time. Absent that, placing something else in his hand, like the end of his blanket, can help protect the tube. It does make me nervous when he holds his phone now, because it's only getting heavier and I'm worried he is going to drop it on himself.

Finally, I wonder whether the lighting in the living room contributes to the hallucinations or delusions Dad has experienced. The Red Cross incident happened yesterday morning, where he was bound and determined to leave the bed and get to work. At this time, we had the overhead lights turned off, and had softer lamp lights gently illuminating the room. After that we turned on the main living room lights for most of the day, and I noticed more effective awareness of his surroundings. I wonder if the softer lights contribute to a more dream-like state. Just a personal observation with no basis in scientific fact.

A couple weeks ago, Dad expressed how much he appreciated the gallows humor from some of posters here. He, himself, joked that he thought he might get out of Christmas shopping this year. Well Christmas has come and gone, and I don't think he has considered the fact that he may be subjected to a terrible rendition of Auld Lang Syne tonight at midnight.

I can't express our thanks enough for the continued well wishes and prayer. My own prayers have been reduced to the simple and ongoing request to ease Dad's suffering. There is no way for us to know how much longer until Dad is in heaven. It could be a matter of minutes, or even weeks. My Dad's younger sister referred me yesterday to Psalm 139:16, where it is written all of our days are ordained and written in His book before any of them came to be. Therefore, whether it's minutes, hours, days, or weeks, the timing will be perfect. God bless.

58 Replies

Thanks so much to you, your brothers and your Mom, all of you going through the worst time of your Dad's life. It is tremendously appreciated that you have continued to provide these updates, no matter how painful it may be to you and those of us following your Dad's final journey. He is a true warrior.

For me, I had believed, or at least hoped, that hospice care would be a relative smooth experience providing controlled pain management and keeping side effects to a comfortable minimum. Clearly, I appear to be misinformed.

😪🙏

This is Chris responding. I would not call it smooth, but it has been a tremendous blessing and a humbling experience. There is no where I would rather be than at my Dad’s side, and it has brought my brothers and I significantly closer as we support Mom.

Dad also feared entering the state he is now in. But there are zero negative emotions or associations made with the care we are giving him. I am simply grateful for the opportunity to serve him and support Mom.

Well said. It is truly a blessing for all wonderful care provided. No regrets! God bless.

I am crying right now because reading your post very closely mirrors what we went through with my husband almost a year ago. It was very hard as his wife and caregiver to go through the dying process with him. When he passed, I was so relieved that it was over for him. As of today, I miss him terribly and cannot imagine a time when I won't. You are a wonderful son and I salute you and your family for the care you are giving your father. It was the hardest thing I have ever been through.

j-o-h-n profile image
j-o-h-n in reply to shuckymesh62

to Ms. shuckymesh62,

My most sincere condolences on the passing of your dear Husband on January 21, 2021. May he rest in peace with the angels. Bless you.

j-o-h-n Saturday 01/01/2022 2:11 PM EST

Lulu700 profile image
Lulu700 in reply to j-o-h-n

🙏💔

Thank you.

Dear Chris, thank you for taking over your father's missives here to all of us. You are sharing these moments, so important to your father and your family, but difficult too. To be there for him when he needs it most is a blessing for him. My mom was in hospice a few years back with end-stage Parkinson's disease. So my heart goes out to you.Best wishes for the new year.

Thank you Chris . It’s very nice for you to inform us . We follow your father with a breaking heart . IMO his strong faith will serve him well . With Christ we don’t fear death . We just don’t wish to leave the ones that we love . My father had this too . He checked out at 71 . But not a day goes by without me still loving him . Our fathers are in our dna . God bless him . He is blessed with you . Love is eternal . Cherish him . 🙏💔😢

westof profile image
westof in reply to Lulu700

Hmm... Coincidental that my younger sister and I spoke this week and we used the same words to express our love and the void that their passing has left in our lives.

Well said!

AJ 🥂 (to great memories)

Lulu700 profile image
Lulu700 in reply to westof

😢

j-o-h-n profile image
j-o-h-n in reply to Lulu700

Great Post.... Thank you....

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 01/01/2022 2:31 PM EST

Chris, thank you for carrying on your dad’s letters. I look for these updates and read them before anything else. Truly inspirational. God bless.

Chris. Thank you for this update. I cried but also felt the love your Mum and brothers have for your father.He is a great man (what I would call a real man, who served in the forces, kept his faith, remained loyal to his wife and you sons are a credit to him). I am pleased that his faith has remained strong and yours.

Best wishes and prayers from England.

Graham

Praying for continued blessings for your family.

Darryl profile image
DarrylPartner

My tears are dripping in honor of your Dad and his family. Indeed everyone here in the Malecare prostate cancer community are your family. We all hope your family and your faith are comforting and all of these minutes are tempered with love and courage.

Darryl profile image
DarrylPartner

Chris please share your email address with me so that I can update our community if there comes a time when posting is difficult Darryl@malecare.org

Chris, thank you for posting this week. I continue in prayer for your dad, your mom, and for all of you.

Love, Aunt Sheri

Your dad - my brother - has indeed fought the good fight and kept the faith. He is nearing the finish line and our God & Savior Jesus Christ is ready to welcome him home.

For I am already being poured out like a drink offering, and the time for my departure is near. I have fought the good fight, I have finished the race, I have kept the faith. Now there is in store for me the crown of righteousness, which the Lord, the righteous Judge, will award to me on that day—and not only to me, but also to all who have longed for his appearing. 2 Timothy 4:6-8

Thanks for the update and God bless you and your family. I was my father's caretaker and lived with him for 6 months. Though the final outcome sucked, one of the best 6 months of my life. I now have "his" cancer and know what to expect

God bless your father and your family. Praying for you all.

Prayers for your dad, mom, you, and your brothers. Your dad is so proud of all of you. Being my husband’s wife and caregiver was the greatest honor of my life. He passed 9 months ago. God bless you.

Thank you Chris for taking the time to write such a detailed accounting of your Dad’s experience. You have no idea how much your Dad’s posts and now yours help all of us here. I am a caregiver (I prefer the term love giver) to my wonderful husband. He is still doing fairly well and I hope is years from hospice but we both know that is where we will end up some day. These posts help prepare us a little as to what to expect. You dad and family are in my prayers. 🙏

Chris, it's very obvious that Jim has a loving family who cares and loves him so very much. What a good son you are.

My father passed away at home from cancer in 2005 and my mother, my sister and myself were his caregivers. The last month was hard on him and us, but we would not have had it any other way. His journey was very similar, the difference being, he didn't know God. The hospice people asked him if it would be okay if a pastor came to talk to him and he said yes, as long as he didn't talk about God. It still makes me sad to this day to think about it.

Please know that many of us have all of you in are thoughts and prayers.

Blessings and Love,

Kay

Thank you for sharing his continued story 😥. God is your strength and He will help you each step of the way. My prayers are with your family and I will pray that God will ease his suffering.

Thanks Chris’s for this heart wrenching and yet heartwarming post.

You might type “ Alzheimer’s touch “ into Amazon and take a look at all the “ tactile “ touch items available. We used them routinely at the V.A. Medical Center for patients like your father. They often offered a grounded experience for those fading in and out of consciousness and for those that needed tactile stimulation for anxiety relief as your father seems to need. Just a thought. They are easy to make as well.

The fact you are doing so much to keep Jim in his familiar and comfortable home is so far “ above and beyond “ that it shows great love for your father. He is some kind of lucky to have all of you at his side in this deep time of need. Past this ….words are too difficult through the tears.

❤️❤️❤️

Chris thanks for keeping us informed as to what is happening to your father at this difficult time.

Hi Chris,

Thanks for updating us. Love the closeness it has brought to all of you. My very best to all and stay strong. Keep the Faith.

Take care

❤️

Haniff

God bless you all for being there for your dear brave father. Your all in my prayersSheilaFx

Bless you for sharing this journey, a hard and important one. From my personal experience…sometimes because of oxygen to the brain issues, the person my get agitated and nasty - speak to your hospice person immediately for solutions. If his breathing gets rattled there is medicine for this, again ask your hospice team. Often, the bottom of the legs will get a dark colour shortly before death, an indicator. Let him know you have forgiven him for any wrongdoing wether the wrongdoing was true or imagined and that you know he feels the same about you. This helps so much with the grieving process. Be sure to keep assuring him that you (4) will take care of his beloved wife and one another. ..and give him permission to go and be with G-d. That your family understands and is ready for this. It helps. Some people believe to put his head near the window with an open crack will help his soul transition more smoothly to heaven. Lastly, most hospice workers believe that people choose who will and who will not be in the room when they pass. It sounds like someone is with him constantly. You may try leaving him alone occasionally for just 5 minutes in case that is the choice he wants to make. It sounds like your dad is almost finished his journey on earth and you and blessed to know where he is going. Your family’s new journey is around the corner. It is an excruciating one. Take very good care of yourselves and one another.

Amy

G-d = God?...

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 01/01/2022 2:29 PM EST

Awwww Chris, so sorry Man!Jim knew this would come to be, and clearly wanted to share for all of us to one day be prepared.

For me, there has to be a better way. In the year 2022, no human being should have to experience this prolonged pain in order to climb the stairway to Heaven.

I liked hearing how this time has brought the 4 Brothers closer together, and closer with your Mother. Maybe that is why this final chapter extends.

It just seems with medical technology there has to be a more gentle way to exit.

My Mother passed in a very similar fashion 22 years ago this week from Melanoma that finally entered her spine, and climbed up to her brain. In 22 years so much has changed in technology, yet the experience of death seems unchanged.

I thank you and your family for these stories so I may plan my own journey, in my own fashion, when my time comes. I will share this with my wife.

My very best to you and your family. Jim will soon be out of this pain and discomfort, and you will be relieved, sad, but also know you were there and did all you could to show him love.

Mike & Barbara

St Pete, FL

I’m so sorry for your Dad’s suffering and all the difficulties you and your mother are going thru to care for him. I pray to God that his days on this earth will be painless. My wife reads your posts and she worries that someday I may be be in the same position. God bled you, your mother and your brothers

God bless you and your family. Your Dad sounds like he is one of a kind, and he will be sorely missed when he goes to the Lord.

Chris, thank you for continuing these enlightening but painful updates. I lost my significant other in November 2020 after a Stage IV prostate cancer diagnosis 17 months prior. Psalm 136:16 "All the days ordained for me were written in your book before one of them came to be" -- was a verse that also brought comfort to me from the tremendous guilt I felt for not encouraging him to go to the doctor when his subtle symptoms started appearing a few years prior. Peace and blessings to you and yours in this new year.

Amazing testimonial and gift to us all. God bless your family and may God bless us all. Thank you

Thanks, Chris - to your Dad, you, and your family- for allowing us to share in this journey. I fear that the physical part of dying can easily overwhelm the (more important, IMO) spiritual and emotional part of dying. Experiences like Jim's can inform the rest of us on this path, whenever it comes. Prayers and thoughts to you and yours. - Joe M.

Thank you Chris for continuing this tough and insightful post. It is touching me tremendously. Your dad sounds like a wonderful man and his family is a testament to his strength, wisdom, poise and honor.

What a legacy that I’m sure he is so proud of as he lives his final days. I can only hope to be equally blessed when my time comes.

So sorry for your family but thank you for posting his journey. May the lord bring him peace.

Thank you, Chris. Your love is evident and inspiring.

Thank you Chris so much for continuing with this journey that we all are on at whatever stage. Your father is a lucky man to have you all with him and being at home will bring him great comfort and remove a lot of feelings of confusion and fear that a new environment can bring. Hopefully the pain can be controlled somewhat. All my thoughts are with you, Jim, and your family.

Thank you. I read and reread your posts. You and your family have been blessed to have such a wonderful father, a true warrior. As a caregiver, I thank you for giving me the inside of what is to come. Bless your family. Sending hugs from afar.

Thank you Chris. You and your siblings are great legacies of a man who lived a good life. With my Mom, we had the same hospital-in-the-living room set up. It worked well for caregivers, and visitors to say good-bye. For what it's worth, I have an old IPOD with all my music on it. Should I get to this stage, (or a decline due to Alzheimer's), I think this will be a way to rest peacefully in bed listening to the music I grew up with.

see_bee01 profile image
see_bee01 in reply to CharlieBC

Fantastic idea. Thank you!

JAMES, JAMES, JAMES..... What are we going to do without you?

j-o-h-n Saturday 01/01/2022 2:25 PM EST

Chris, you are going through a difficult journey but just know your God is going through it with you. In dark times like this He draws near so you can see His shadow when He comes for your father. Your life will never be the same again after that. That's life on earth and that's our God who is in heaven. No man can survive without this faith and you have it.

Great Post. Thank you and take care.

Thank you for you honest and heartfelt post. I'm glad you have you after at home and four brothers to help and be there for him. I pray for peace and comfort for him and all of the family.

Chris you are truly that humblING and gift a loving father would have love next to him.Beside your never ending love and stand your ground of FATHER you deserve the best DAD..Your family exemplifies and amplifies what a family truly suppose t be…

Can you tell him in his ears we on this forum live for him and love him at the same time.

HE US NOT ALONE…

DAN

Thanks for posting, not always easy times. May you sense the Love of God's arms wrapped around you as you continue to walk this journey. I just lost my father 12 Dec 2021 (not to PC). But to heart issues and Parkinson's. He was hoping to not wake up here but to wake up some morning to see Jesus and my mother who had passed Aug 2020.

May God give you the Grace to continue to walk the journey with your dad and family.

Here is a link to a song that was sung at his funeral. Just over yonder--hope you enjoy!

youtube.com/watch?v=RhVtiik...

Blessings

Keith

So very kind of you, Chris, just like your dad, to share your thoughts and feelings during a painful time. We here, with PCa, are family, as is everyone, everywhere, IMHO. Many of us will travel the same path as your dad. While not looking forward to it, I'm expecting to, soon, and these threads help a great deal. I send them all to my wife to prepare her. A little sad, but softens the fear of the unknown. Thank you and your family for your most courageous efforts.

I believe you dad, and all of us go to a wonderous place, and it doesn't matter what religion one is, it's still the same place!

An easier route for passing is a humane one that some of our lucky pets get. Euthanasia is a most interesting practice, illegal in most countries, for a myriad of reasons. May the God you love bless, and ease your burden.

Thank you for your very honest account of your dad’s journey. My husband passed away two years ago this month and I have felt very bad that I was not able to honour his wishes to pass away at home. Unlike your family I had no help and I was managing on my own. Like your dad, my husband had terminal dementia and couldn’t understand that he couldn’t safely get out of bed on his own. He had a dreadful fall getting out of bed to go to the bathroom when I was in the kitchen. I had to admit that I couldn’t manage on my own and he spent his last week in palliative care in hospital. He was well cared for in hospital and I was able to be with him all the time. You and your brothers are doing a wonderful thing supporting your mum and honouring your Dad’s wishes. Sending my love and prayers for you all. ❤️🙏 Caroline

thank-you for sharing Chris ... your Dad is so blest to have his loving wife and four loving sons travel his very hard road with him ... i am continuing to remember your Dad and all of you in my daily prayers and when I attend Mass ... hugs to all of you ... Nous :)

Thank you Chris for continuing to post. I continue to pray for Jim and all of you. Sending love and light. 🙏

God bless your father and his wonderful family 🙏.

Your father can be very proud of you. Thank you for taking the time and effort to sharethis with us. Peace to you and your father and family.

Thank you He is surrounded by those he loves and love him

That alone should bring comfort

Thank you for your post, Chris. I am so very sorry for what your dear Dad is going through. I am praying for his comfort and peace, and for strength for you and your family. May God bless you all.

I say this with a Smiling heart your dad is blessedHe’s so very much loved. I took care of my mom and dad and it was such a privilege for me. The way that I put it was I was with my mom when she took her last breath like she was with me when I took my first. I worry when my husband gets worse who will be with us. Unfortunately it won’t be out sonHe’s married someone that completely cut us out . I hope this doesn’t sound Strange but I envy your mom because she has her sons there. I pray his pain will lessen and God

Will say come home now Jim

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