What may be my final update

worriedson714

Hello ,

So I just wanted to update everyone on my dad's situation which had gotten very bad at one point . After resisting for a week it finally got to the point were my dad was just continuing to go downhill and we brought in hospice . Like alot of people I was very fearful of this thinking hospice would just drug him up and speed up the end .

But I am hear to tell you all the myth's about hospice are very wrong and I realized that about 20 minutes into my dad's enrollment . As the hospice nurse explained to the doctor how many oxycodone my dad was taking . The hospice doctor was quick to say " that's just poor medical management " and he wasn't going to give pain medication that way . So in place of a oxycodone every two to four hours the hospice doctor started my dad on a fentanyl patch . As well as giving us diloudin in liquid form for any break threw pain .

Let me tell you my dad's pain is so much better now he's more relaxed able to rest better not so agitated and his confusion is not as bad all the time like it was . Now I'm not going to tell you everything is perfect with hospice cause the hospice nurse spoke about every step my dad would go threw on his way to death right in front of him which sent my dad into a panic . But with a phone call to the hospice supervisor that was fixed and now the nurse realizes we want all positive vides around my dad and that hasn't happened again .

So that's been our experience with hospice so far and dad does have his struggles it's hard for him to get out of bed without help . He still struggles to eat and has lost alot of weight but his vitals are strong and he is in a much better place then he was before hospice . And this is coming from someone who was very against hospice at first but I'm here to say I was wrong .

So I don't know how much time my dad has left with the grace of god it will be longer then the doctors expect . I don't think I'll ever accept the end of my dad's life I will continue to hope and pray for a miracle from god I have to the acceptance just isn't in me maybe I'm not strong enough for it ? But right now my focus is being there for my dad telling him i love him and holding his hand and supporting him threw whatever comes next . So I'm not sure if this will be my last update or not but I just wanted to get this update out there and tell everyone on this board thank you you have helped me threw something I never thought I would make it threw . And even though there are darker days ahead for me I'll always remember and say a prayer and love and be thankful for you all .

BerniceOB

I’m so sorry for everything that you and your family are going through. I have seen many of your posts over the past year. Life just doesn’t seem fair sometimes. I will be praying for you and your family.

PamRav

Glad that they were able to control your Dad’s pain. You’ve been a good and attentive son throughout your Dad’s illness. You are stronger and braver than you realize.

Wishing you and your family comfort and peace

hugs,

pam

Floshoe

This is so helpful for those of us whose loved ones will be facing this decision, so thank you from the bottom of my heart for taking the time to share this. I’ll be thinking of your dad!

beaumontdave

Sorry you're at this point, I recall my wife, Cindy in hospice in our living room, home for Christmas and very much the center of life in that house. It was easier to maintain a steady schedule and dosing of the liquid morphine which I handled. With my son there, and one of my daughters renting the back of our large house, I had sufficient help to let me keep up with work. It went 5 months with better days and rougher ones, but it was mostly a smooth progression, she even went to a community Bunco{a game], in her honor 2 months before she passed. I recall feeling numb more than anything else, though I'm sure all the emotions popped up in various places. I'd heard such bad stories about how brain tumor victims went, that I was quite prepared to intervene if it went that way, but she simply slept more and more often until she finally stayed asleep. I was both aching and relieved in that time. I know you're staying in the moment, and holding out for time and that turnaround, and there's no wrong way for you to perceive this period, hope is such a great human view. I just wanted to relate a relatively undramatic, quietly poignant end time, that was so very hard, but wasn't nearly as traumatic as my mind imagined. I honor her in my memories now, and I know the aching that pops up now and again, is all my doing, and not what she'd want tied to her beautiful life, but those are still hard things to separate, many years along. My thoughts are with you as you cope with life's hardest moments.....................Dave

MandiePandie

You and your dad are never far from my thoughts. I’m happy he is getting some relief.

Thank you for sharing everything that you have. It sounds like you are doing all that you can, hes lucky to have a son like you.

Try not to worry too much about eating. I know the weight loss can seem scary but I remember when my grandmother was sick from lung cancer. My aunt forced her to eat and my grandmother had a very uncomfortable blockage. The doctors later told us that its common for families to want to feed their loved ones on hospice but its always best to just go with whatever they want, if they're hungry get them whatever they want, and if not, let them be. The doctor told us that not eating doesnt cause someone to go faster at that point.

I hope you get some quality time in with your dad now. Youve been through so much, Im glad you are able to still be so strong and continue supporting him.

Please update us as you see fit.