Putting Dad In Hospice

[FrannieJ]

My Dad is 79 years old and had his first bout with illness when he had his first heart attack at the age of about 47, followed soon after by a stroke a year or so later. Since then he moved to FL, remarried, had open heart and vascular surgery, subsequent angioplasty, melanoma which was treated and went into remission with radiation (did I mention that he has been managing his diabetes with insulin for the last 35 years). Most recently broke his femur bone, had an acute gall bladder attack and subsequent gall bladder removal - both of which led to (or maybe all meds he takes) chronic pancreatitis, poor kidney function and more. Two weeks ago, he was in the hospital again after being found unresponsive at home and then while in the hospital went into cardiac arrest and was paddled which we thought was a lost cause ... but then doctors got a pulse after telling us they lost him. Then he was put on a respirator only to be weaned off it in under 24 hours, but now could not talk and failed a swallow test (food aspirating into lungs - which I believe may have already been an issue), probably due to the ventilator. He refused a feeding tube even temporarily and understood if he wanted to eat by mouth he would have to go home or to a hospice facility. He has now been in hospice for about 5 days and was able to eat very little the first couple of days, but he is now declining and we've been told by hospice nurses that he has started the dying process. He was of sound mind and made his own decision. We, his children, spoke to his doctor and was told defribulator and feeding tube had to be offered although he declined them both, but that his quality of life still might not be much better than what it was in the hospital and they could not promise that he would even survive 6 months. Dementia had been rearing its head for the last year, he was diagnosed with post traumatic stress disorder (from Korean War in which he fought) and after many years of health problems ailments were just racking up and causing irreversible havoc to his body. Somnewhere deep inside of me, I think he made the right decision for himself and even for us, but now watching him slip away has been very hard and leaves us time to second guess his (our) choice. He has no one thing that will take his life in an instant, he is just deteorating in front of our eyes not eating or drinking, cannot talk and becoming less and less responsive and sleeping most of the day. It is terribly sad to watch although I feel blessed to have been able to say goodbye - I only hope that it is only hard on us and that he is between life and death with no real pain or distress in the fact that he is dying. How did we really know he could not survive and would not regain any quality of life? I know that my Dad was always independent and hated help, so does that mean we should have let him give up? My Dad fought through lots of illnesses and won, and I believe he did so because he knew something good was waiting after his recovery. I like to believe this time he knew he wouldn't really be living only that his body might "function" for a while longer with the means the doctors offered to keep him going. So maybe he didn't give up, just surrendered to the inevitable with as little discomfort as possible. He didn't want to be poked and prodded any longer and could not stand being in the hospital the last few times. But, how will I ever know? It is killing me. How do I make peace with this decision, even though in the end it was not mine to make anyway? I feel that maybe he didn't understand what he was doing, although I really believe he was more clear in this moment than he had been in a long time. The longer it takes for God to take him to the next life, the more time I have to contemplate. I wish God would take him from this life and let him and his family rest in peace. The longer this process takes I think the more we will wonder "what if". Has anyone been through anything similar situation, how did you get through it? I want there to be someone to tell me this was the right thing, but I don't know if that could ever happen or if I will ever feel that way. Did I mention that I live in New York, and am now home since I have to care for my 7 year old daughter who lives with cystic fibrosis? My brother lives in FL and is with him, but it feels so unnatural to be home living my life while he is left lingering. Does anyone have some help or advice to offer me? I am so grateful I found this site, I feel better just expressing these feelings. Thanks.

[FrannieJ]

Well, my Dad must have known what I was grappling with. He passed today a few hours after my original post. Rest in peace, Daddy, I want to believe the right choices were made. I love you!

[MartyT]

Oh my dear Frannie, I am so sorry! I read your first post earlier this morning, shortly after you placed it here, and was only just now returning to offer you some information and support.

So your father has died, and you are still left with all your questions. I'm so sorry. May I still say to you that yes, absolutely yes, you made the right decision by placing your beloved father in the care of hospice ~ most especially because that is what he wanted. This was your father's life to live as he so chose, just as it was his own dying to do, however he saw fit to do it. Sometimes the most difficult thing we can do is to let our loved ones do what they decide to do, recognizing that such important choices are theirs to make, not ours. From what you've described in the story you've told, your father was of sound mind. It does not sound to me as if he had "given up" so much as he accepted his own mortality, he knew that his body was sick and dying, and he was ready to make the transition from this earthly life.

I had hoped to offer you some readings about hospice to reassure you that your father had made a very wise decision in requesting it. I'm sure that now your focus will be on funeral preparations and finalizing his affairs. But please know that your voice has been heard here. We know that your grief journey has only just begun ~ and when you return to us, we'll still be here to accompany you on that journey, every step of the way. Please go knowing that you are in our thoughts and prayers, and you have our deepest sympathy . . .

[FrannieJ]

I can't thank you enough Marty for your words of support. When my Dad passed a few hours after I wrote my original post, it made me feel as though he was telling me the right decisions were made - so I felt a little better; and then I got your reply and was even more sure. I am back in FL now for the funeral and being back where he lived and him not being here is hard but I am coping. I am getting the next feeling of doubt, though, that maybe we could have done more after his gall bladder surgery - something we missed, maybe the surgeon messed up and we didn't pay enough attention to the signs. Nothing can bring him back, I know, but I guess the mind tries to justify or place blame but I am fighting the urge to dwell on any mistakes that may have been made since it will do me no good. I have nothing to base my suspicions on anyway, just something I read that stated gall bladder surgeries are really not routine and people should be careful. His was an emergency surgery anyway, so he couldn't have delayed it if he wanted to; but I just need to believe that his surgeon was competent and that my dad's body just couldn't handle any more. This scenario makes me feel OK, but any thought that mistakes could have been made and avoided for a better outcome just makes me sick - again I have no basis for this only my own mind going out of control after reading the snippet about botched gall bladder surgeries, which couldn't have come at a worse time. Any words of wisdom that will help me move on from thoughts like this, they just make me ill ... Of course I also have the regrets that I should have seen him more, called him more, cherished the times together more, been more proud of him, found out more about his life - the list could go on. I can deal with these feelings - they feel normal to me since I don't think anyone lives like they are dying until it is too late (or if you are lucky enough to get a second chance to do just that). Anyway, I am babbling at this point, but I am so grateful to have found this site since this "babbling" feels very freeing and cathartic for me. Thanks again Marty ... would love to hear from you again and from other members for support in helping me with my doubting feelings and regrets. THANK YOU!

[MartyT]

Again, Frannie, it does not seem to me as if your father was in the best of health when he suffered that gall bladder attack, so I have to believe that whatever happened in the aftermath was going to happen regardless.

I'm so sorry that you're struggling with all this guilt in the wake of your father's death ~ but I also believe it is normal for a daughter who loves her father to be feeling this way. I've learned over the years that only really good people feel guilty about what they would've, could've, or should've done to save their loved ones from death, but the sad fact is that we really don't have much control over such things, and I'm willing to bet that, under the circumstances, you all did the best you could with what you knew at the time, and that includes your father and the physicians who took care of him.

You might find this article helpful, as it contains some tips for coping with guilt: A New Year and the Burden of Guilt

I am taking the liberty of moving your topic from this forum into our Loss of a Parent or Grandparent one, in hopes that doing so will put you in better touch with others whose losses are similar to your own. Again, our thoughts and prayers are with you and your family at this sad time.

[LostmyHoney]

Hi Frannie,

The "what ifs" ext. are something we have all done. It has been 7mo. 6days since I lost my Honey and I still go through it. Not as often or as strongly but those thoughts do still invade my mind. Its like my mind knows there was nothing wrong with the way things played out but my heart keeps grasping at straws. I wish you peace in the months to come.

Rachel

[FrannieJ]

Thank you Marty and Rachel. I am so grateful to have found this forum to express myself it really makes me feel better to come back here to post and read posts. It has only been 5 days since my Dad's passing and I must admit I am terrified of the feelings that lie ahead. I am feeling sad right now with a heavy heart, but I am with family in the state where my Dad lived and know that when I go back home to lead my life there will just be this void knowing that my Dad is no longer out there for me to call, visit and just to think of how he's doing. It has been hard here too, but the presence of family (although at times annoying since I want to experience some of this grief alone) has been comforting since we have all been staying together in the same house. One of my brothers wanted to go to see the sunset in my Dad's favorite spot - that was hard for me and felt torturous. I don't understand how people want to remember others in places that the lost family liked - it just seems to me to make the loss even more profound since it is just more of a reminder that someone is missing. I feel like such a different person now, without him here with me. I am 41 years old the youngest of five children, and still held on to my role as the baby and daddy's little girl - I feel like I finally need to grow up and it's kind of scary. Our mother although always present in our lives had not been my primary caregiver since I was 5 years old and having been the youngest there was a block of time that it was only me and Dad once my other siblings were grown and out of the house. Don't get me wrong, I left his home at 18 to move back to NY (he moved us to FL) after high school, married at 23 and had a child of my own at 33 - and as crazy as it sounds still think I loved my Dad more than anyone in this world. I mean outwardly, I took care of my husband and child first, but in my heart the person I worried most about losing (since he was sick often but remarried and taken care of most of the time) was my Dad. Before I went to bed, when I woke up - I thought of my Dad, how he was doing, etc. I am ashamed to admit all of this - it doesn't seem rational that my husband and child were not first in my mind - but I try to rationalize it since it was me and him when I was an adolescent and I was always afraid to lose that one person who didn't leave me and was taking care of me. But all these years later? Was my outlook unhealthy? Now I am lost without him to think of, without a daddy to keep me safe in this world. The obvious is to focus more on my husband and daughter, and I hope I can re-channel everything this way, but have a feeling it will be more difficult than that to navigate. Thanks for listening.

[BellaRosa]

Frannie, I read your initial post the other day and my heart just broke for you. The "what ifs" are just horrific, aren't they? I felt the same way when my dad and I had to make the decision to remove life support for my mom. We knew she wouldn't have wanted to stay on it, but since she wasn't conscious to make the decision, it fell on us. What if we made the wrong choice? What if the doctors were wrong and she could have pulled through? Rationally, I know that even if she would have been able to breathe on her own, she still had lung cancer that had not improved at all with the chemo/radiation she endured. I know now that we made the right decision, but those 6 days in the ICU were the worst of my life.

I'm so sorry you're dealing with this loss, but I'm glad you found your way here. There are many wonderful people on this site, and there is always someone will "get it" and be able to relate. It's been comforting to me to know that there are other people out there dealing with the same feelings that I am. It makes me feel less crazy and alone.

Erin

[Violet Rose]

Frannie

There are no words and not enough words to say. I lost my Dad around the same time as yours. Like your Dad, mine fought and won over many illnesses over his life and this was one more I thought he would pull through, but, alas the man who I called a 'cat with 9 lives' had no more lives spare. We are left to pick up the pieces of our shattered hearts and to carry on. We may have lost them physically but I found that in their passing of life, they are passing on their strength, wisdom and knowledge. I look at myself now and see so many of my Father's traits that I know that he is with me every day, because I am his daughter and who I am and what I do is partly of him and partly of my Mother. In saying that, it still hasn't stopped me from crying, feeling alone and abandoned. Time will heal, I just don't know how long. Dad's passing has hit me like an Antinov.

Kayla