********* Posted November 20, 2012 Share Posted November 20, 2012 Dad is still in the hospital. Today marks 3 months. He's still on dialysis three days a week; we don't expect that to change. Besides kidney failure, his official diagnosis is 'congestive heart failure'. He's on blood thinners, which has caused him to have a continuous nose bleed. It just won't stop. He's had to have transfusions. He's claustrophobic, feels trapped, has horrible anxiety including panic attacks, his appetite is low, he trembles, and his bed sore is still AWFUL. He's on heavy duty pain meds, blood thinners, anxiety meds, depression meds, and has 'wound vac' for his bedsore. They are talking about discharging him to a nursing home 'for a while', but if his insurance doesn't approve that, he'll go straight home. Could be tomorrow, could be a week. No one knows. He seems like a 86 year old man now, not 56. Every time I go see him, he's SO sweet to me. Just says how much he loves having me there, doesn't want me to leave, asks me to read the Bible to him and pray with him. It's so bittersweet. 'Cause it ruins me to see my dad this way. He's never going to be better. The doctors have told us to expect him to keep having severe complications because his health is so compromised. I feel hopeless and helpless, and have been having some dark days recently. I realize it's supposed to be 'good' that dad's ready to be discharged soon. But he's NOT BETTER. Sure, he isn't on a ventilator anymore. But I just foresee him going back into the hospital soon and repeatedly, getting sicker and sicker, until he dies. I just feel so sad lately. I hate seeing my dad like this. I feel guilty for not being more available to him. I'm struggling with anger and hatred toward my mom, who doesn't want him to come home because it will be too much of a burden on her. But more than that, I'm struggling with feeling like we made the wrong decision to keep dad on the life support for three weeks. I feel like maybe we made the wrong choice. What sort of life does he have now? How is it fair that we kept him around so that he could slowly waste away, full of anxiety and sickness? It just seems like we did the wrong thing. The selfish thing. Quote Link to comment Share on other sites More sharing options...
AK_Mom4 Posted November 20, 2012 Share Posted November 20, 2012 :grouphug: :grouphug: :grouphug: :grouphug: :grouphug: :grouphug: You will both be in our thoughts and prayers. Quote Link to comment Share on other sites More sharing options...
TravelingChris Posted November 20, 2012 Share Posted November 20, 2012 I am so sorry. I will continue praying for all of you. :grouphug: Quote Link to comment Share on other sites More sharing options...
Lara in Colo Posted November 20, 2012 Share Posted November 20, 2012 There was no "good" or "bad" choice. You just had to do the best you could. Stop making yourself feel any type of guilt over that. First of all, it's done, and second of all, you didn't have then, nor do you have now, a glass ball to see the future. He could still impact lives during his time left. Just take what you have and enjoy the good. Lara Quote Link to comment Share on other sites More sharing options...
BridgeTea Posted November 20, 2012 Share Posted November 20, 2012 :grouphug: I'm sorry, Bethany. You all have had a tough road. Please try not to second guess any of your choices. There's just no way to predict exactly what might happen, and so we do the best we can with the information we have at the time. You must be such a bright spot in your father's life! Try to enjoy the time you spend together, and then don't feel guilty when you take a break, too. Self-care must stay at the top of your list so you don't wear out. More :grouphug: . Quote Link to comment Share on other sites More sharing options...
Another Lynn Posted November 20, 2012 Share Posted November 20, 2012 :grouphug: I'm sorry, Bethany. You all have had a tough road. Please try not to second guess any of your choices. There's just no way to predict exactly what might happen, and so we do the best we can with the information we have at the time. You must be such a bright spot in your father's life! Try to enjoy the time you spend together, and then don't feel guilty when you take a break, too. Self-care must stay at the top of your list so you don't wear out. More :grouphug: . :iagree: and :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
PrincessMommy Posted November 20, 2012 Share Posted November 20, 2012 :grouphug: :grouphug: Those are such hard decisions and the "what if's" can kill you. Just live one day at a time. 56 is awful young and I can see why your family chose the way it did. It's often such a gamble how things will turn out. Your father is a Christian, right? He can pray... This world needs prayer warriors. :grouphug: Quote Link to comment Share on other sites More sharing options...
butterflymommy Posted November 20, 2012 Share Posted November 20, 2012 Unless you know what his wishes are in advance there is no right or wrong decision about life support (IMO). He does sound very ill and his health needs very complex, I can understand why your mom is intimidated and reluctant. But the fact that he loves having you near him is a beautiful thing, you're lucky to have a dad who can even express that to you. No advice other than to take it one moment at a time and push through it. Quote Link to comment Share on other sites More sharing options...
Harriet Vane Posted November 20, 2012 Share Posted November 20, 2012 :grouphug: Don't be too hard on yourself. :grouphug: Quote Link to comment Share on other sites More sharing options...
Tokyomarie Posted November 20, 2012 Share Posted November 20, 2012 Bethany, you are in such a tough, tough spot. I was walking a similar road with my mom (different diagnosis), who went into the hospital close to the same time your father went in. Her time came much quicker; she passed away on Oct. 9th. I second and third others who say, "Please don't second guess your decisions. We all make the best decisions we can with the information we have and relying on the recommendations of health care professionals." You have worked hard to be there for your dad- it shows! But we are not the doctors and nurses who deal with this stuff every day- even I, as a PT, did not have the background in oncology and chemotherapy to make decisions based on professional level information. And, even the doctors do not know how an individual patient will respond until they've done the treatments and they see what happens. Given that your father's life expectancy seems to be severely limited, have the doctors broached the idea of hospice care? If they haven't, it might be helpful to locate your nearest non-profit hospice organization and talk to them about what kind of care they could offer for your dad's situation. Your dad may not be ready for it yet, but if you decide for hospice, one benefit is having professionals available who can sensitively talk through decisions related to end-of-life. My mom was on hospice at the very end and it was a terrific experience for us. I assume that your dad should qualify for nursing home care at the skilled care level. His pressure sore, dialysis, and many other medical needs are all issues that require close monitoring from a skilled health care professional. If you opt for hospice care at some point, however, he would not be able to receive both skilled nursing care in a nursing home and be on hospice at the same time. ETA: He could not be occupying a skilled care bed, but he could occupy a regular bed at a nursing home and receive hospice care there. I wish you the best as you continue to demonstrate love for him in very practical ways. Quote Link to comment Share on other sites More sharing options...
EKS Posted November 20, 2012 Share Posted November 20, 2012 :grouphug: Quote Link to comment Share on other sites More sharing options...
Scarlett Posted November 20, 2012 Share Posted November 20, 2012 There was no "good" or "bad" choice. You just had to do the best you could. Stop making yourself feel any type of guilt over that. First of all, it's done, and second of all, you didn't have then, nor do you have now, a glass ball to see the future. He could still impact lives during his time left. Just take what you have and enjoy the good. Lara I agree. So sorry Bethany. Quote Link to comment Share on other sites More sharing options...
5LittleMonkeys Posted November 20, 2012 Share Posted November 20, 2012 I don't have any advice. I just want you to know that I continue to think of you and your family. :grouphug: Quote Link to comment Share on other sites More sharing options...
Impish Posted November 20, 2012 Share Posted November 20, 2012 :grouphug: :grouphug: :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
Desert Rat Posted November 20, 2012 Share Posted November 20, 2012 Bethany, My heart just aches for you. I'm so sorry. I know exactly how you are feeling. The inbetween is unbearable. I'm so sorry. Quote Link to comment Share on other sites More sharing options...
mlktwins Posted November 21, 2012 Share Posted November 21, 2012 Bethany, I don't post much on here, but I have been following your story. :grouphug: :grouphug: :grouphug: to you! Speaking from experience, please don't second guess the decision that was made. It is done and you can't go back. If you had decided not to put him on life support and he passed away, you would also be second guessing yourself. My dad, with approval from me and my sister, decided not to have potentially life saving surgery (brain injury) performed on my mom after a horrible accident. I won't bore you with the details, but I have spent a great deal of time second guessing that decision. I have also thought also about what life would have been like for her had she survived the surgery and been kept in a vegetative state. There is no easy answer :sad: . Just cherish every moment you have with him, which I know you are already doing. I'm just really sorry.... Quote Link to comment Share on other sites More sharing options...
hana Posted November 21, 2012 Share Posted November 21, 2012 Bethany, I'm sorry, but I agree with the others--you made the best choice you could at the time. And you still bring him joy. I do need to say, I'm pretty sure I know the area he is in--be very careful about nursing homes in the area. My partner had to spend time in a rehab in Sept. after hip replacement. I chose one I expected to be good, and it was NOT. I don't remember how much you have posted about location, so I don't want to put anything here unless it's ok with you. Feel free to message me if you want and I can tell you of our experiences and recommend one I heard from several people is really good (but it wasn't covered by our insurance). Quote Link to comment Share on other sites More sharing options...
Twigs Posted November 21, 2012 Share Posted November 21, 2012 There was no "good" or "bad" choice. You just had to do the best you could. Stop making yourself feel any type of guilt over that. First of all, it's done, and second of all, you didn't have then, nor do you have now, a glass ball to see the future. He could still impact lives during his time left. Just take what you have and enjoy the good. Lara :iagree: … I'm so sorry for all you, and your dad, are going through! Will continue to pray for you all! Please don't feel like YOU made bad decision, like YOU did something you shouldn't have and now your dad is here, in pain and all! You made loving, caring decision for someone you deeply love. And if it had been his time, God could've taken him, life support or not. Just please know that none of this is because of you or decisions you made. You love your dad. … :iagree: Unless you know what his wishes are in advance there is no right or wrong decision about life support (IMO). … :iagree: … please don't second guess the decision that was made. It is done and you can't go back. If you had decided not to put him on life support and he passed away, you would also be second guessing yourself. … There is no easy answer . Just cherish every moment you have with him, which I know you are already doing. I'm just really sorry.... :iagree: :grouphug: :grouphug: :grouphug: to all who are facing or who have faced these situations. Quote Link to comment Share on other sites More sharing options...
Catwoman Posted November 21, 2012 Share Posted November 21, 2012 Bethany, I'm so sorry your father's condition isn't improving. Is there any hospital, anywhere, like maybe the Mayo Clinic or something, where they might be able to help him? If your dad wasn't so young, I probably wouldn't suggest it -- and I don't even know if he'd be strong enough to make the trip -- but I keep praying that there's a group of doctors somewhere who would be able to figure out how to do more for him than the current hospital is doing. Maybe I'm just being too optimistic, though. I haven't actually seen your dad, so obviously I don't really have a clue. Still praying. :grouphug: Quote Link to comment Share on other sites More sharing options...
besroma Posted November 21, 2012 Share Posted November 21, 2012 I am so sorry. {{Hug}} Quote Link to comment Share on other sites More sharing options...
MercyA Posted November 21, 2012 Share Posted November 21, 2012 Thank you for the update, Bethany. I've been following your posts for several months now and have prayed for you and your dad. Just a few thoughts...First of all, congestive heart failure is not a death sentence. I know people who have had it for 10 plus years and are able to live very normal lives. Likewise, many people do just fine for a very long time with kidney dialysis. I know your dad is having a very, very rough time, but these are not necessarily insurmountable problems. Blood thinners can cause weakness, dizziness, and a loss of appetite, so that might be something to keep in mind, especially considering his nose bleeds. The claustrophobia and anxiety are certainly understandable and could very well improve when he is out of the hospital. He may not regain his formal level of health, but that doesn't mean that things can't improve. It's wonderful that he's able to have such good interactions with you, and it sounds like you are doing all you can. There is no reason for you to feel guilty about that or about your decision to keep him on life support. Just because he is sick and disabled doesn't mean it would have been better if he had died. :( His life is not what you would choose for him, but it is still his life. Please keep doing what you are doing to help make it a good one. He is still the same person and he needs you. You will be in my prayers today. :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
trlt Posted November 21, 2012 Share Posted November 21, 2012 Just a few thoughts...First of all, congestive heart failure is not a death sentence. I know people who have had it for 10 plus years and are able to live very normal lives. :iagree: My grandma has been living with congestive heart failure for the past 15 years. She is doing well considering she is 85 years old. She was very weak and wasn't doing well for a while but she actually started doing better and continues to do well. She also has had 2 strokes so she does have other issues but she takes care of herself and is fairly independent. The point is that people can live fairly normal lives with that condition. Also, being in the hospital for so long can cause a lot of depression so maybe when he gets out that will improve. :grouphug: my thoughts are with you and your dad. Quote Link to comment Share on other sites More sharing options...
Denise in IN Posted November 21, 2012 Share Posted November 21, 2012 :grouphug: for you, Bethany. You have been through so much these past few months, and you've been a wonderful support for your Dad. As others have said, please don't second guess the decisions you've made. In those difficult decisions, you make the best decisions you can with the information you have at the time. And that's what you'll continue to do. You're doing it with love and your dad's best interest as your goal, and that is what's most important. I'll keep praying for you and your family. Quote Link to comment Share on other sites More sharing options...
celticmom Posted November 21, 2012 Share Posted November 21, 2012 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
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