Am I coping?

[theredspinel]

Dad is dying. He's on his death bed. In and out of hospital. Invasive procedures after invasive procedures, pinning him down; this great big strong man that used to lift me into the air and arm wresstle me (me using my whole body and he using 3 fingers ) now reduced to skin and bones being held down by multiple big burly male nurses so they can inject him or change him or clean him. He's dying and he needs his dignity. He's not getting it.

Every day he asks us with his eyes why are we letting "them" try to "kill" him? He asks with his eyes you see as he can't ask with his voice anymore.

And yet it doesn't end. It doesn't end. And instead of the family coming together we have never been more apart. Argument after argument some even over the death bed!

And the cherry on top. Decide if we're willing to accept palliative care now. He's there according to the doctors. He's not there according to the family. Me? I don't no. He's there. But if I let him die what if I was wrong and he wasn't at that stage and I just accepted his death. Accepted it without fighting it. Will he forgive me? Are my family right to fight it?

When does it become prolonging death over prolonging life. When is that line. Can't someone tell me.

I can't talk anymore. Can't try to keep explaining to well meaning friends and extended family. They don't have a clue. Neither do you probably. So why am I here? I don't know.

 

[missy]

Oh I am so sorry theredspinel. There are no easy answers. Life is full of suffering and then we die. Bleak but true. For me if there is no chance of recovery of quality of life I would want the suffering to end. Both my dh and I have each others powers of attorney and a living will that states as much. We know each other's wishes and will carry them out to the fullest of our abilities. Do you know what your dad wanted before he became so ill? Did he share his wishes with the family? Does he have a living will?

I am so sorry your dad is suffering like this and I wish we were more humane as a civilization as to not make people endure that kind of suffering.

There is no one size fits all nor one right answer. It just depends. I wish for your dad peace from his suffering and for you peace with whatever decision is reached. Sending you good thoughts and gentle hugs and we are here to listen and be supportive any way we can. ((((HUGS)))).

 

[Tekate]

Spinel.. I am so so sorry for your pain.

When the end comes for our parents (and eventually us).. family dynamics take on new (old) ways, when my father died all he$$ broke loose amongst the 4 of us. It was horrible.

Has everyone taken up the role they played as kids? ie: oldest acting like the leader, youngest acting like a baby (say)... sibling confict from long ago really rears its head during these times. If this is the case for you all, then you might want to point this out to your family and also steer towards 'DAD' what would DAD want.. This is why I have so impressed on my sons what I want, I don't want my 2 boys fighting while and after I die..

My heart goes out to you. It's a time to come together Spinel.. your family. (I know it can get even worse if your Dad's siblings, your mom everyone get's into the fray).. so I feel for you and wish you much peace, I wish your father a happy place... I am so sorry

Peace to you.

 

[tyty333]

I'm so sorry theredspinel...times like this just break my heart. Some people want to do everything they can to keep him alive even if quality of life is
just not there. Others have found peace and know "its time". So difficult for everyone. Have any of the doctors mentioned hospice care? He may
not be at that point but if he is in my opinion they provide a very humane way to pass. They also provide support for the family I believe which may
help people to come together.

Will be thinking about you and hope that you and your family can agree on the same treatment. Also wishing you peace with whichever path you decide.

 

[kgizo]

I'm so sorry theredspinel. It sounds like a very difficult and emotionally charged time for you and your family. Does the hospital offer patient care advocates or social workers? It may help to have someone in a neutral position talk through the options for your family. Sending hugs your way.

 

[HopeSpringsEternal]

I am new to these boards and I don't know you or know anything about your Dad's situation but just wanted to post to say I am so sorry you find yourself here.

I am 38 and have lost both my parents to cancer. I watched them both suffer in different ways. My mum had 16 months from diagnosis to death and she wanted to cling to life. She was only just 58 when she died. There was no choice to be made, her little body was worn out. My Dad had less than 2 weeks and it was very sudden, he went from being a fit and healthy 70 year old to being admitted to ICU with pneumonia and a DVT. Ultimately he had stage 4 lung cancer. He would not have wanted to fight knowing it was terminal. He would have wanted his dignity.

The only words that I can offer you is that you will do the best you can for your Dad at the time. Things I considered for my Dad were (he was intubated and sedated and so could not communicate and diagnosis was not 100% certain) would he want to go on like this? Was he suffering and would he be able to get better? What kind of life would he have if we continued treatment in the short term and long term?

It's a terrible position to be in, especially if your family do not agree. Listen to the Dr's and listen to your heart. You know your Dad. As hard as it was and as much as I didn't want to let mine go I knew it was time. I spoke to family, I gave them time to talk to Dr's and to discuss it together. Luckily my Dad had never been shy about his wishes and he had a health care directive so that brought me comfort. Ultimately you all have to live with the choice you help to make for your Dad, it is an extreme burden but I believe an extreme privilege too. None of us will live forever. These decisions are the last things we can do for our loved ones. You will make the right choice because you will do it with love. Your Dad no doubt knows you love him and at the end of the day that is all that matters. If we leave this world having people who love us and miss us what more can we really ask for. We have made our mark on the world.

Be kind to yourself and your family as much as you can. Hold your Dad's hand and feel the warmth of his skin. I believe it is a very personal journey and although it doesn't feel like it now it is one you will no doubt navigate holding the love you have for your Dad in your heart.

 

[elle_71125]

I'm so sorry that you are going through this right now. I'm so sorry that your father is going through this. I can't pretend to understand what you feel. I am very close to my dad and I can only imagine what you are dealing with.

Do you know what your dad would want? My mom for instance, always talks about what she would want, if something happened (she works in an assisted living facility). She says that she doesn't want to live anymore, if there is no real quality of life. My dad, on the other hand, prefers to keep going. To each his/her own. I would like to think that your family knows what your dad would want. We can not make these decisions based on what we want. It's important to honor the wishes of those we love most (even when it's indescribably difficult).

You and your family are in my thoughts. *Big hugs*

 

[AnnaH]

T, so sorry for your dad, you, and your family. If it helps to come here, I hope you will return.

 

[Bonfire]

Gosh I'm so sorry! I watched my dad suffer and pass from cancer. I wish your family could all come together for the benefit of your dad. Grief is so overwhelming, everyone reacts differently. I feel every adult should have a Living Will that spells out your wishes in a situation like this. I wish you peace.

 

[Calliecake]

I'm sorry you are having to deal with this Red Spinel. IVe been thru something similar and unfortunately as often is the case in life family can have very different opinions on what is the best way to handle things. Family dynamics come into play as was noted above. Also when emotions are this high it everything feeling is going to be heightened. You need to do what you think your dad would want you to do. Also try to remember that everyone handles things differently and more than often there is no right or wrong especially when dealing with how people handle grief.

Last year my brother had less than a month left to live. He was dying and he knew it. Certain family members got angry if you mentioned the fact that this wasn't going to end well and that the end was in fact near. I was with my brother for about 10 hours everyday and met with every doctor that came to see him. What I took away from the situation was I needed to focus on doing what my brother needed and putting others second. And even that didn't go over well. I was the bad guy on a few occasions and to be honest I had to let it go. My brother received a miracle and is doing well today. He has very little recollection of what happened during those 5 months of hell. Thankfully everyone has moved on and things are good again.

I wish I had some easy right and wrong answers for you. From my experience there isn't. If I were you I would try to be as understanding as possible and remind yourself that this is a terrible situation and hard on everyone and accept the fact that everyone my deal with their feeling differently. Sometimes saying less is the right thing to do and walking away and for an hour can help tremendously.

 

[Arcadian]

Its never easy when a loved one is going through all of this. My mother has a living will. I'm thankful she has it because its very very specific about what she wants and what type of care she will accept. My father. well...

But I already told my siblings I will not fight with them. I don't do it now, I certainly won't then. I love my folks but unless I'm appointed to take care of their wishes (I'm not) I will be hands off. For me thats more of a self preservation move than anything else.

Like Callie said, there's not a right or wrong answer here.

 

[whitewave]

Palliative care is managing complicated illnesses. Yes. Call in the palliative care doctor. You will be glad you did.

 

[whitewave]

Palliative care is not hospice.

 

[whitewave]

Forgot to add: my BFF is a palliative care doctor. Usually patients start feeling better once palliative care gets on the scene because instead of 5 doctors all prescribing meds, you have one doctor (palliative care) now overseeing and prescribing everything.

This eliminates unnecessary meds and tones down the side effects and the meds given to combate side effects, etc. The meds get toned down, the patient feels better and the family starts getting along again.

I can't recommend palliative care enough.

 

[Scandinavian]

I'm so very sorry. It is impossible to know what is right for others. But it is your dad. And you know him. So if you can not ask him, perhaps you can ask your heart what he would want. Hugs!

 

[whitewave]

How is it going?

 

[MaisOuiMadame]

I am so , so sorry you are going through this. Fighting is the last thing one wants in this situation. When we cared for my dad two years ago and my grandma last year during their last months, we were all on the same page and knew we did what they wanted, but it was still very hard.
I can only third the recommendations for a palliative care doctor. Also hospices usually have excellent advice for relatives and really know the local support networks and professionals.
Is there a doctor your dad trusts? Our family doctor was with us and while he didn't take any actions besides holding his hands, his presence was calming and reassuring for my dad. Maybe in your situation his voice might be heard by all family members...
Please don't hesitate to seek help for yourself as well. In spite of our situation being non-conflictual, my sister developed a ptsd and counseling helped her a lot. She keeps saying that we should have started counseling much earlier.
My heart goes out to you.

 

[kenny]

So sorry you and your dad are in this place.
I fourth the recommendation for palliative care.
My SO finally got that and it makes a world of difference.

 

[Ally T]

This is tough. My father was diagnosed with leukaemia the day before my Birthday, at the age of 58, almost 16 years ago. He was so fit & healthy that they blasted him with aggressive treatment. Four weeks later they lumbar punctured & he was amazingly & shockingly in remission. A couple of days later, the bleeds in the brain started. Five days on from that, he was in intensive care, on a ventilator, his damaged brain slowly closing his body down. And here was our decision. We, as a family & with lots of medical guidance, decided to withdraw the adrenaline to the heart. One hour & 58 minutes later, he was gone, with us all there, whispering to him & loving him & stroking his skin. Exactly 5 weeks from diagnosis & the day before my brothers Birthday.

There is never a right or wrong decision in these cases. Sometimes people want to prolong life for their own sake, not for that of the patient. When my father in law suffered a massive stroke 2 years ago, he lost movement & speech. He wore nappies & just stared through you. But sometimes, his eyes would fire, he would focus on you, grunt & struggle, before blurting out "Kill me." He knew where he was at & he wanted to go - you could see it in his eyes. He passed in his sleep this past New Years Day, and it was a huge relief.

I haven't yet read the previous posts because I don't want it to sway what I say, so I apologise if I offend anyone as I would never intentionally do that. What I will say, is that family HAVE to be in full understanding & agreement. My little sister knew what we needed to do with our dad & that we would never get him back because he was already gone, but one night after a few drinks several years later, she screamed at me that "we" murdered dad. It was vile & she got a hard slap for her troubles.

Lots of love to you. There is no right or wrong, but just what is best for the patient & not for the bystanders. I hope you can get through this & send you lots of reassuring hugs x

 

[luv2sparkle]

So sorry you are going through all of this. Hugs. It is never easy with a loved one.

 

[theredspinel]

Thank you so much for all the messages. Thank you sincerely from the bottom of my heart and moreso to those of you who have gone through this and taken the time to retell your stories. Thank you.

I wish I could answer your questions and respond to you individually (it's the least you deserve for your time and compassion) i wish I could but I don't feel like I can speak. I feel blocked. It was I guess a rare moment that day when I posted this. The words managed to come out. Normally, I guess I'm like this. I wish desperately inside I could speak about this but I just can't. I'm so sorry and I hope no one feels they've wasted their time. I've taken great comfort in reading your words.

 

[Ally T]

Everybody who has ever gone through something similar, knows exactly where you are at. It's horrendous & sickening, so you just need to do what you need to do.

I have never told the story about what happened to my dad in detail, except to my ex, to my husband, and now to you. And it made me cry to type, but I really wanted you to know that you are not alone. Be angry, clam up, hit out, do whatever you need to. We are all here for you offering lots of support from all around the world. I am in a very rural area of the UK. Others here are from elsewhere on the globe, but what binds us here is our love for bling, our shared experiences & respect xx

 

[Slickk]

I am so sorry for what you are going through. These decisions are the most difficult one could face. It's so hard to say goodbye yet if you know your loved one is suffering and I think there is no way to see that as quality life.
I went through something similar, my mom was diagnosed with cancer, 6 weeks after that my dad passed unexpectedly (he was in the ER, mom was upstairs at the same hospital!) After he passed, mom just deteriorated, maybe it was happening anyway, but there did come a time when I knew I had to get her palliative care. In my state, you can only get that if the treatment is stopped. I made the decision alone, my brother is 1000 miles away. I brought her back to her home on the lake, made her comfortable and she passed peacefully four days later. Six weeks after my dad. The last thing she said to me on our way to her home from the hospital was "Thank you." It still makes me cry, they are still with me...
I'll be thinking of you. Take care of yourself too. You are coping because you have to and you will. It's a truly heartbreaking situation. ((Hugs))

 

[AGBF]

Like other posters here, I have been through this, too. Twice. The second time (with my father) was much easier than the first time with my mother. One always feels responsible if he loves someone else deeply. He wants to give the the other person good things. I wanted to give my father spoonsful of ice cream right to the very end of his life because he enjoyed them. Even when he wouldn't drink anything else or take anything else from anyone for a while he would take ice cream from me. His aide told me (in jest) that he was angry with me that father would take ice cream from me and not from him.

There comes a time, though, when one (or a family) realizes that some decisions do not make sense. With my father that time came to my brother and me when we realized we were pushing my father out the door via ambulance-since he couldn't even sit up anymore in a car and use a wheelchair- to go to doctors' appointments! But up until then we wanted to take good care of him, not neglect him, not let our precious father have any less care than he had ever gotten...so we were taking him to the dermatologist to get his skin cancer cared for and to the dentist to have his teeth cleaned. How could we just let him sit there as if he were not human? This man we loved and adored? He was a man, not some old, dying THING. We CHERISHED him. He deserved the BEST.

So we were forcing him out the door in an ambulance? It was madness!!! And we were the lunatics.

We came to our senses and went to palliative and then to hospice care and my father died without any pain. And I thank God for the hospice team.

Everyone is different, but I am so glad that my father had palliative care and hospice at the end. I send love and prayers to you and your father and family.

Deb

 

[Slickk]

Like other posters here, I have been through this, too. Twice. The second time (with my father) was much easier than the first time with my mother. One always feels responsible if he loves someone else deeply. He wants to give the the other person good things. I wanted to give my father spoonsful of ice cream right to the very end of his life because he enjoyed them. Even when he wouldn't drink anything else or take anything else from anyone for a while he would take ice cream from me. His aide told me (in jest) that he was angry with me that father would take ice cream from me and not from him.

There comes a time, though, when one (or a family) realizes that some decisions do not make sense. With my father that time came to my brother and me when we realized we were pushing my father out the door via ambulance-since he couldn't even sit up anymore in a car and use a wheelchair- to go to doctors' appointments! But up until then we wanted to take good care of him, not neglect him, not let our precious father have any less care than he had ever gotten...so we were taking him to the dermatologist to get his skin cancer cared for and to the dentist to have his teeth cleaned. How could we just let him sit there as if he were not human? This man we loved and adored? He was a man, not some old, dying THING. We CHERISHED him. He deserved the BEST.

So we were forcing him out the door in an ambulance? It was madness!!! And we were the lunatics.

We came to our senses and went to palliative and then to hospice care and my father died without any pain. And I thank God for the hospice team.

Everyone is different, but I am so glad that my father had palliative care and hospice at the end. I send love and prayers to you and your father and family.

Deb

Hugs Deb. You are so right about all you said...it is never the right time for the survivors, but it's the dignity we need to preserve for our beloved.

 

[AGBF]

Forgot to add: my BFF is a palliative care doctor. Usually patients start feeling better once palliative care gets on the scene because instead of 5 doctors all prescribing meds, you have one doctor (palliative care) now overseeing and prescribing everything.

This eliminates unnecessary meds and tones down the side effects and the meds given to combate side effects, etc. The meds get toned down, the patient feels better and the family starts getting along again.

I can't recommend palliative care enough.

I am glad you posted this, whitewave.!I totally forgot that this was the case for my father until I read your posting. In his case, I think the reason that palliative care made him so comfortable from the start was not that any medication was 'toned down", but that he got the correct medication! He was given morphine orally from the very start and it was 1,000 times more effective for the pain he had than the other medication we had just gotten from his internist. I think he had been given Vicodin. (He did not have a specific illness, but he was developing bed sores and one of his legs had stiffened from lack of movement. If one touched it he said, "Ow! Ow! Ow!".) We were also offered Oxygen and and a benzodiazepene if he became uncomfortable. After my father's death, the nurse came to dispose of the medication he had not used. I was amazed that almost every pill almost the entire bottle of morphine were still left. He had really been comfortable with very little, totally comfortable, for the entire time he was on palliative care and hospice care.

 

[whitewave]

My friend said it never ceases to amaze her....

 

[Calliecake]

Red Spinel, Please take good care of yourself and your heart and know we are here for you if you need anything. I'm so sorry you are dealing with this. Hugs, hugs, hugs

 

[VRBeauty]

Theredspinel: I'm so sorry you're going through this, and that your family isn't all on the same page yet. I'd second kzigo's suggestion to engage a patient care advocate or social worker if possible - someone to help put the medical opinions into perspective. I'm well aware that the desire to believe recovery can occur can be very strong, and can blind even the most analytical among us. Hospital social workers etc. are trained to help people see and accept reality, and to act accordingly.

Whitewave, thank you for the palliative care information. I'm (rather) familiar with hospice, but wasn't aware that was essentially a separate course of action.

TRS we're here if you want input or even just a place to talk...

 

[TooPatient]

Thank you so much for all the messages. Thank you sincerely from the bottom of my heart and moreso to those of you who have gone through this and taken the time to retell your stories. Thank you.

I wish I could answer your questions and respond to you individually (it's the least you deserve for your time and compassion) i wish I could but I don't feel like I can speak. I feel blocked. It was I guess a rare moment that day when I posted this. The words managed to come out. Normally, I guess I'm like this. I wish desperately inside I could speak about this but I just can't. I'm so sorry and I hope no one feels they've wasted their time. I've taken great comfort in reading your words.

This community is amazing. You'll find everyone here for you ready to offer support and wisdom or just hugs from a distance. No need to respond individually or in detail. Just know that you are free to share as much or as little as you are comfortable with and we're all here.

You aren't alone. Sadly, this is a common thing within families.

Sending you hugs at this difficult time.