A little backstory is that I am an only child, my parents are divorced, and my dad had me much later in life. When I realized my father was much older than everyone else's as a child I already began dreading the day he would be gone. He has been my best friend and wonderful father.
He is now 90 years old and in longterm care, which hasn't been easy, as he's constantly asking to come home and saying he can take care of himself (he is in a wheelchair and can't do anything for himself). The path here was not easy. I spent the previous 10 to 15 years managing everything for him and adjusting my life so he could continue to live as independently as possible. So, pretty much my entire adult life has been spent helping him. I don't regret it -- we have a lot of wonderful memories together. But the past couple of years have been very hard.
Two years ago he fell and broke his hip and suffered horrific panic attacks 24/7 from being immobilized. I brought him home from assisted living because they couldn't provide the level of care he needed, and I was awake for 2 days straight taking care of him before I could start to get home care in place. Even with home care I could never leave the house because they might call out, which happened regularly, and I'd have to cover shifts, clean urine soaked wheelchairs, help him with the bathroom, a lot of things I was not comfortable with as I am not a medical professional for a reason. It was all a very traumatic experience.
This past week his doctor started hospice care because he was going to the ER for a lot of things with no fix. They also mentioned he could come home again at the end, and that absolutely terrifies me. The thought of witnessing him die makes me start sobbing uncontrollably. I can't imagine being back in the home care prison. I feel my family, who are all far away, expects me to be at his side starting right now because of the hospice, even though they say his vitals are very good and he's recovered from his last ER visit. I live in another state 6 months of the year and I think it is the only thing that has gotten me through, having some distance, and we still talk and facetime every day multiple times. When I am there for the 6 months, I work, short term rental his home to cover the expenses there (which is also very stressful), and then spend all my free time visiting him (which isn't pleasant, as he just talks about leaving and he gets very upset and we spend all of our time going through why that isn't possible. I am so drained and sad after visits). I would give anything for him to be well and home again, but that isn't the reality.
I am so tired. I am so sad. I spend so much time talking with doctors, nurses, managing his care, finances, everything. It's all a lot, but actually approaching a possible death in the future just feels absolutely impossible to get through. I've been waking up at 3am sobbing, thinking about everything that is coming next. I guess I don't even know what I am asking, other than how do only children handle this horrific pain of losing your best friend, as well as the horrible guilt that I don't think I can survive witnessing this.
Get dad into a Skilled Nursing facility with hospice care coming in. You can sit with him all day every day if you'd like, and then leave when you're tired. Let the nursing staff and hospice do the hands on care, and you be his daughter again. That is my suggestion. And leave before dad takes his last breath. Truly, we come into this world alone and leave alone.
It's very important to grasp the fact that dad's led a long life, quite a bit longer than the average person lives. While we never want to say goodbye to a loved one, there comes a time we all must do so. I got to have dad for 91 years and mom for 95. When it was time for them to pass, it was time for their suffering to end and for them to finally achieve perfect peace. No more pain, no more dementia, no more wheelchairs. I was happy for them in that regard. I'd watched too much misery to wish them more time on earth, it was unfair of me to do so.
Please don't feel guilty about the inability to witness dad pass. Say everything you need to say beforehand. Thank him for the amazing life he gave you and for being such a wonderful man. Remind him of his contributions to society and how much you'll miss him. I laid with dad in his bed, with my head on his shoulder and told him all of those things myself. There was nothing more to say when he was in the final hour of his death anyway. He wasn't alone.....all his late family members were waiting for him and calling him home anyway. Hold onto that thought as you do what YOU must do to move forward after he passes.
Best of luck with a difficult situation.
I would tell him kindly that he can't come home because the doctor says he is not ready yet. Then redirect the conversation. Hard as it is, you could also tell him that you love spending time with him but you will have to limit the visits if he continues to argue about going home. Tell him it's out of his hands AND yours, and these conversations exhaust and upset you.
You could try saying, yes, dad, it is sad that you don't want to be here but you have to be. I feel sad that this is happening but I am happy to see you nonetheless. You do not have to go over and over the reasons why he has to stay there. If you don't engage with this line of discussion, he won't be able to continue it for long.
You should get into therapy immediately. You might find medication will help you greatly in this sad time of your life. It's so incredibly sad and scary, and it is causing you immense stress. You can also start helping yourself by doing things like focusing on your dad being here now. All anyone has, no matter what age, is this moment. Live in it. Be thankful he is there, even though it's not in the way he'd like to be, which is robust and healthy as he was in the past. That's not possible. You can't fix that for him or for you.
You worried about losing him early in your life because he was older when he had you. He has reached a very old age now for a man. You might've spent the time differently if you hadn't been so anxiously anticipating the worst. It sounds like you've suffered anxiety and depression for a long time. It doesn't always look like people think it does.
I too felt as you did many times in my life. Didn't matter if they were 50 or 100 when it happened, but my parents would die. I began to make sure people knew how I felt about them and tried to spend time with them when I could. I am not discounting the way you feel about your dad or telling you to medicate this away. I am telling you that it sounds like it is getting in the way of your life, and you are going to have adverse health effects, mental and physical.
You would be a little better able to handle the coming changes if you got help for anxiety. You will be able to enjoy your time with your dad a lot better. Hospice also has 13 weeks of grief counseling after your loved one dies. Everyone should take advantage of that, it's free and is part of hospice care.
By the way, tell your family they are welcome to come and stay by his side right now, and that you hope they will. They can't make demands of you, so try to let go of that. People are always trying to guilt others into caring for someone else, and that's so they don't have to do it.
You are not required to do any of your dads hands on care, and you most certainly should not bring your dad home to die, but should allow the hospice agency to bring your dad to their hospice house when he's close to dying.
And you don't have to be at dads side when he dies either. He knows you love him and that's all that really matters.
If you're not careful with all stress you're under, it will be you that is the one dying and not your dad, so please seek out a good therapist to help you sort things out. Your dad would want that much for you.