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Author Topic: My dad is dying  (Read 7509 times)

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Offline runnergal

  • Member
  • Posts: 28
My dad is dying
« on: October 14, 2010, 12:03:44 AM »
Well its been awhile since I posted an update about my dad.  He was doing really well,  his first set of lab indicating that the viral load went from 5000000 to 26000,  but then he had to go to the hospital for what the doctor thought was a stomach flu,  he was realeased again with a swollen abdomen,  flew home to stay with me,  and when he was still nauseous and was not feeling well,  I took him to the hospital again.  Within a few minutes of being seen by the doctor,  they noted he had ascites or fluid on his abdomen.  He was admitted to the hospital,  where they did another liver biopsy (this was his third,  the other two came back negative for cancer),   well this one didn't. He was diagnosed with lymphoma,  and to make matters worse,  they released him early from the hospital after the biopsy before knowing the results.  I had to take back again.... and he was dehydrated and in renal failure.  Two days ago I had to make the hardest descision of my life..... to either have my dad recieve dialysis with likely arficial ventillation and then try to see if he could get chemo with advanced AIDS or to let him go peacefully.   Knowing what my dad wanted,  he is now in palllative care and we are only making him comfortable for his short time left.   My dad is my angel, I am heartbroken.   I am very close to my dad and honestly I don't know what I am going to do without him...  this disease just plain sucks,  and I am so angry and devasted. 

Offline Hellraiser

  • Member
  • Posts: 4,136
  • Semi-misanthropic
Re: My dad is dying
« Reply #1 on: October 14, 2010, 12:18:06 AM »
I am so very sorry to hear all of this.  I thought from the silence that we would be hearing good news from you later on, but I guess it's not always the case.  My thoughts are with you.

Offline jkinatl2

  • Member
  • Posts: 6,007
  • Doo. Dah. Dipp-ity.
Re: My dad is dying
« Reply #2 on: October 14, 2010, 12:20:01 AM »
My father was in hospice before he died. Those people are amazing. They made the darkest hours of our family's life less painful. Please take full advantage of that care. With luck and love, your burden will be far less than it would be, otherwise.

I have nothing to offer but empathy and sympathy. It is hard, too hard, impossibly hard to lose your dad. But with the care you are receiving, it will be no harder than it absolutely has to be.

It is going to be an awful time. No one should tell you different. But you and your family are doing the best you can, and receiving good care. We get through this, sometimes with the strength we borrow along the way. I wish you strength, and love, and resolve.

Jonathan
"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline Rev. Moon

  • Member
  • Posts: 3,782
  • Smart ass faggot ©
Re: My dad is dying
« Reply #3 on: October 14, 2010, 12:22:43 AM »
Terrible news, Runnergal.  Wishing strength, peace, and love for you, your father, and your family during this difficult moment.
"I have tried hard--but life is difficult, and I am a very useless person. I can hardly be said to have an independent existence. I was just a screw or a cog in the great machine I called life, and when I dropped out of it I found I was of no use anywhere else."

Online Jeff G

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  • Member
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  • How am I doing Beren ?
Re: My dad is dying
« Reply #4 on: October 14, 2010, 12:30:59 AM »
Im so sorry to hear about your dad , my thoughts are with you and your family .

Offline Matty the Damned

  • Member
  • Posts: 12,228
  • Ninja Please
Re: My dad is dying
« Reply #5 on: October 14, 2010, 01:22:12 AM »
Runner,

May your dad's passing be mercifully swift and as painless as possible given the circumstances.

:(

MtD

Offline komnaes

  • Member
  • Posts: 1,893
Re: My dad is dying
« Reply #6 on: October 14, 2010, 05:53:37 AM »
Sorry to hear about your dad..

Just want to wish him the best. For someone who has had similar experiences (my father died of AIDS over 13 years ago and he spent the last month in palliative care), I would also want to encourage you to also really look after yourself. You will need all the supports from family, friends, etc that you can find.. don't hesitate to ask for them.

Hugs, Shaun

(edited for typos)
« Last Edit: October 14, 2010, 07:46:49 AM by komnaes »
Aug 07 Diagnosed
Oct 07 CD4=446(19%) Feb 08 CD4=421(19%)
Jun 08 CD4=325(22%) Jul 08 CD4=301(18%)
Sep 08 CD4=257/VL=75,000 Oct 08 CD4=347(16%)
Dec 08 CD4=270(16%)
Jan 09 CD4=246(13%)/VL=10,000
Feb 09 CD4=233(15%)/VL=13,000
Started meds Sustiva/Epzicom
May 09 CD4=333(24%)/VL=650
Aug 09 CD4=346(24%)/VL=UD
Nov 09 CD4=437(26%)/VL=UD
Feb 10 CD4=471(31%)/VL=UD
June 10 CD4=517 (28%)/VL=UD
Sept 10 CD4=687 (31%)/VL=UD
Jan 11 CD4=557 (30%)/VL=UD
April 11 CD4=569 (32%)/VL=UD
Switched to Epizcom, Reyataz and Norvir
(Interrupted for 2 months with only Epizcom & Reyataz)
July 11 CD=520 (28%)/VL=UD
Oct 11 CD=771 (31%)/VL=UD(<30)
April 12 CD=609 (28%)/VL=UD(<20)
Aug 12 CD=657 (29%)/VL=UD(<20)
Dec 12 CD=532 (31%)/VL=UD(<20)
May 13 CD=567 (31%)/VL=UD(<20)
Jan 14 CD=521 (21%)/VL=UD(<50)

Offline emeraldize

  • Member
  • Posts: 3,350
Re: My dad is dying
« Reply #7 on: October 14, 2010, 06:51:09 AM »
Hi RunnerGal,

I'm sorry to read of the sudden shift in your dad's health. He's fortunate to have you near and loving him. 

I lost my signficant other eight years ago due to prostate cancer and came to realize I was his escort to his death. A significant role of using soft words, favorite music, whispered remembrances and encouragement, when the time came, that it was okay to let go.

You made a difficult decision based on your love of him and knowledge of his wishes. Hold his hand, cool his brow, swab his mouth, and all the while take good care of yourself--get the rest and food you need as the cycle of grief exacts its toll.

Thank you for sharing your heartache with everyone here. You're right, it is a disease that sucks--it sucks the wind from sails, and the breath from loved ones living and dying. Consider yourself his angel now.


Em

Offline Realist

  • Member
  • Posts: 162
    • NotDownNotOut's Blog
Re: My dad is dying
« Reply #8 on: October 14, 2010, 03:55:34 PM »
Runnergal,

We all watched your steely determination in resolving your dad's issues when he was diagnosed and first started meds. Your questions and desire to learn what you could do to help were an indication of how much you wanted to succeed in pulling him through and was deeply admirable.

You have the strength to support him through the next stage of his illness and when you are ready the rest of us will be waiting to give you the strength and support you need.

Remember to look after yourself at this time.

23/02/10 Tests confirmed
25/02/10 13100 220 24%
12/03/10 19800 372 19%
26/03/10 Atripla
30/04/10 58 286 23%
28/05/10 45 222 21%
25/06/10 UD 301 23%
24/09/10 UD 283 22%
01/12/10 UD 319 23%
11/03/11 UD 293 28%
10/06/11 UD 423 24%
23/08/11 UD 389 26%
28/02/11 UD 315 34%

I blogged it all http://notdownnotout.blogspot.com

Offline skeebo1969

  • Member
  • Posts: 5,705
Re: My dad is dying
« Reply #9 on: October 14, 2010, 04:51:52 PM »



   Runnergal,

    I am sorry to hear about your father's eminent passing.  Stay strong sister.

   (((Hugs)))

   Thomas
I despise the song Love is in the Air, you should too.

Offline leese43

  • Member
  • Posts: 257
Re: My dad is dying
« Reply #10 on: October 14, 2010, 04:58:37 PM »
Sorry to hear this, my thoughts are with you both.

Leese
Oct 04 - Neg
Aug 05 - infected
Oct 05 - cd4 780, vl 60k
Apr 08 - cd4 430, vl 243
Jul 08 - cd4 550, vl 896
Nov 08 - cd4 730, vl 1.8k
May 09 - cd4 590, vl 1.5k
Sep 09 - cd4 460 vl 34k
Dec 09 - cd4 470 vl 42k
April 10 - cd4 430 vl 88.5k
July 10 - cd4 330 vl 118k
Aug 10 - started reyataz/truvada/norvir
Aug 10 - cd4 380 vl 4k (12 days after starting meds :))
Sep 10 - cd4 520 vl 1.5k
Oct 10 - cd4 590 vl 44
Jan 11 -cd4 610 vl <40 cd4% 50
May 11 - cd4 780 vl UD

Offline anniebc

  • Member
  • Posts: 5,942
  • AM member since 2003
Re: My dad is dying
« Reply #11 on: October 14, 2010, 05:23:38 PM »
I'm so sorry to hear this, rest assured your dad is in good hand, Hospice staff are angels, they will look after him for you..I lost both my parentsat an early age, I know that heartache only too well.

Sending you and your dad Hugs from NZ

In sadness
Jan
-----------------------------------------------------------------------
Never knock on deaths door..ring the bell and run..he really hates that.

Online Joe K

  • Global Moderator
  • Member
  • Posts: 3,703
  • 31 Years Poz
Re: My dad is dying
« Reply #12 on: October 14, 2010, 05:49:28 PM »
I am so sorry to hear about your father. What an incredible daughter you are. I have a daughter and she knows that I would never want to be kept artificially alive and I know she will respect my wishes. How brave and caring you are, to follow his wishes, when your heart tells you no. Even with his passing, I hope you will always remember that you allowed him to pass, on his own terms and in the end, that is all that we can ever hope to do. Your father is incredibly proud of you and with good reason. You are a remarkable woman.

My thoughts will be with you both.

Offline mecch

  • Member
  • Posts: 11,771
  • red pill? or blue pill?
Re: My dad is dying
« Reply #13 on: October 14, 2010, 07:13:08 PM »
I'm sorry.
Hospice is really good at this time - went trough this with my pop two years ago.  Be there as much as possible it seems to help both child and dying parent.  At the end, he may need to be alone to finally go, watch for signs and communicate with nurses about that.  God bless.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline WillyWump

  • Member
  • Posts: 7,185
Re: My dad is dying
« Reply #14 on: October 14, 2010, 10:24:50 PM »
So sorry RunnerGal, My thoughts and prayers are with you and your father.

Hugs
-Will
POZ since '08

Last Labs-
6/3/14 CD4- 736, UD 34%
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%

Current Meds: Prezista/Epzicom/ Norvir
.

Offline J.R.E.

  • Member
  • Posts: 7,180
  • Joined Dec-2003 Living positive, since 1985.
Re: My dad is dying
« Reply #15 on: October 17, 2010, 09:36:35 AM »
I'm so sorry to hear this, rest assured your dad is in good hand, Hospice staff are angels, they will look after him for you..

In sadness
Jan


Dear Runnergal,

I am deeply sorry to hear about your father. I hope that you and your family members find the much needed strength peace and support to get you through this.

I posted this back in 2006, I think it's important for family members and caregivers to read and understand. I can understand that it may be difficult to read.

The following info,describes signs and symptoms that are common when a person is near death. It is only a guideline : each death is unique as the person who faces it.

Your loved one may experience all, some, or perhaps none of the symptom stated below. Likewise there is no timeline.

As the caregiver or family member of a seriously ill patient, it is important for you to know how the human body prepares for death. When you understand the process, you are better able too comfort your loved one and find peace of mind for yourself.



Hospice is a wonderful, caring organisation. They are there for the patient, they are there for support for the family members...

Personally, I have dealt with hospice in the past. Twice this past year, and at least three times over the past 15 years. They are a wonderful/ caring group !!


I am going to give you some information. I received this information on a pamphlet from the regional Hospice center here in Florida. This may be DIFFICULT for some to read, but it is something that needs to be discussed, especially for those that are caregivers...
These changes are normal, natural ways in which the body prepares to die. They are not medical emergencies. The best responses are comfort enhancing measures.

This information is provided by HOSPICE for caregivers and family members....

COMMON MENTAL AND EMOTIONAL SIGNS :

  Your loved one may spend more and more time sleeping, when his body functions start to slow down. He may be difficult to arouse at times, from sleep, and he may spend most of the day and nights in bed. His eyes may stay open, even though he is asleep.


CONFUSION :

 As your loved one sleeps more, he may become confused about the time, place and persons surrounding him. While his attention is drawing inward, he may speak of seeing a place or people not visible to anyone else.


WITHDRAWAL OR A SURGE OF ENERGY :

 Your loved one may speak less than normal, or not want to speak at all. He may turn his face to the wall or sleep in a fetal position. Thi is NOT a slight against the family; his body and mind are preparing him to detach from his surroundings and relationships.

 On the other hand, it is not uncommon for someone near the end to "wake up" and talk clearly, ask for a favorite meal and actually show improvement in symptoms for a few hours or even a few days.


HOLDING ON :

  A dying patient may try to hold on to life if he senses you are having difficulty letting go. Some patients wait until certain people arrive to let go ; others wait until they are alone. Assure your loved one,that you will be all right and give permission to let go when he/ she is ready.



-----------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------



COMMON PHYSICAL SIGNS :

 Changes in body temperature...  Your loved ones body temp may become increasingly cold, especially the arms, hands and legs. He may run a fever. you may notice that his skin looks bluish or blotchy. His body is decreasing blood circulation to the limbs, to conserve it for vital organs.


DECREASING BLADDER AND BOWEL FUNCTIONS:

 As the body organs slow down, so does the need to eliminate waste. You may notice a decrease in the amount of a patients urine, and it's color could be unusually dark.. Your love one could lose control of his bowel and bladder functions.

UNUSUAL BREATHING :

  Noisy breathing could occur if mucous collects in the throat. Your loved ones breathing patterns may change ; there may be periods when he breathes very rapidly, or period up to a minute, where he may not breath at all.


RESTLESSNESS :

 As you love one begins to draw inward, he may make repetitive motions such as pulling at bed linen or clothing.


LOSS OF APPETITE ;

Food and water is necessary for health and well being because it provides energy to the body. As the body prepares to die, it no longer needs this fuel. Although it may be difficult for families to accept, it is normal for a dying patient appetite or liquid consumption to gradually decrease until it is lost altogether.


Wishing you strength and Peace.

Ray


Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 8/2514,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 62 years young.

Offline runnergal

  • Member
  • Posts: 28
Re: My dad is dying
« Reply #16 on: October 18, 2010, 10:38:09 AM »
Thanks everyone for your sympathies and advice,  your advice really helped. On Thursday Oct 15th my father passed away.  I was by his side,  stroking his head letting him know that he was and always will be loved.   It was a beautiful death if death can be beautiful,  my dad had been largely comatose before his death but he opened his eyes for me and my brother and tired to tell us he loved us right before he passed.  The world lost a good man,  the heaven gained an angel.  Wishing you all health and happiness,  runnergal. 

Offline emeraldize

  • Member
  • Posts: 3,350
Re: My dad is dying
« Reply #17 on: October 18, 2010, 11:15:42 AM »
Peace be with you, Runnergal.

Em

Offline pozniceguy

  • Member
  • Posts: 1,181
  • Niceguy Dallas
Re: My dad is dying
« Reply #18 on: October 18, 2010, 12:37:53 PM »
always  the saddest time   to bear ... wishing you and the family peace and love..

Nick
remember the good times...honor the past but don't live there
Le stelle la notte sono grandie luminose, nel cuore profondo del Texas

Offline Hellraiser

  • Member
  • Posts: 4,136
  • Semi-misanthropic
Re: My dad is dying
« Reply #19 on: October 18, 2010, 02:28:01 PM »
I'm sorry you had to go through all of this and be comforted in the fact that he is no longer suffering.

Offline J.R.E.

  • Member
  • Posts: 7,180
  • Joined Dec-2003 Living positive, since 1985.
Re: My dad is dying
« Reply #20 on: October 19, 2010, 07:37:43 PM »
Dear Runnergal,


My deepest condolences to you and you family.


Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 8/2514,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 62 years young.

Offline Lakis

  • Member
  • Posts: 83
Re: My dad is dying
« Reply #21 on: October 19, 2010, 08:01:56 PM »
I'm so sorry to hear all that.My thoughts are with both of you

Offline steps

  • Member
  • Posts: 12
Re: My dad is dying
« Reply #22 on: October 20, 2010, 12:26:06 PM »
I to have lost many, 3 of my bothers, my mother, 4 friends and a partner of over 18 years.
I watched them past away, one of them in the worst of possible ways. I looked into the dying face of one that I cared for all the way thoughout the entire course of failed treatments and when the end came i simply said with a tear in my eyes "goodbye"
You are doing what your father wished and there is nothing more important then doing this final wish, there is no guilt in doing so only a love of your father . I wish you hope and i feel your pain. You are not alone.

Offline Simba

  • Member
  • Posts: 11
Re: My dad is dying
« Reply #23 on: October 21, 2010, 03:13:17 AM »
My sympathies and thoughts are with you. l am sure he is in a better place and is finally at peace.

Offline debsd222

  • Member
  • Posts: 69
Re: My dad is dying
« Reply #24 on: October 23, 2010, 11:10:48 PM »
So so sorry Runnergal, This is such a hard time. I remember feeling like I was in some alternate universe while dealing with my mom's death...Give yourself some time and extra care now. My thoughts are with you. xx Deborah
April 08 3 month bout w/ shingles, ongoing nerve pain
Dec 08 pos  cd4 200 %8  VL 18,000
Feb 09 started sustiva, truvada -allergic to sustiva, hospital 4 days.
March 09 started truvada, reyataz and norvir
March 09  cd4 279  % 12 VL 10,000
April 09 cd4 327  %12  VL 300
Aug 09 cd4 392  %16  Vl undetectable
Dec 09 hospital pneumonia 6 days
Dec 09 cd4 462  %20  VL undetectable
Mar 10 cd4 629 27% VL undetectable
July 9, 2010 cd4 505  21% VL undetectable
Oct 2010 cd4 689  22%  VL 64
Nov 2010  cd4689  22%  VL  UD
May 2013 cd4 759. 29%. VL. UD

 


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