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.
You have so much on your plate.
Thank you for sharing.
I have faith in you because you just did the hardest thing. You shared. Now we are all witnesses to your struggle. A struggle we share with you.
I would like to point out that your Dad does NOT need to come home for hospice end-of-life care. He may or may not be able to remain where he is. Some hospice providers have their own in-patient settings. So, please, don't stress out over bringing him home for this. And just because he is on hospice care does not mean he will die soon. Some people last a long time in hospice, and may even get discharged from hospice when they begin to improve.
I too am an only child, but I cannot relate to your relationship with your father.
I certainly have never had a relationship like that with either of my parents. I was spared a long drawn -out illness with my mother, who died of cancer at the age of 62, just months after her diagnosis. I did spend the last two months with her.
My 85 year old dad is still pretty healthy and active. His wife is my age and after spending 10 years caring for my bedridden husband, I know that I can not and do not wish to do the same for my father if he ever needs full time hands-on care. They can afford to hire professional care providers, or a nice nursing home.
Someone living to 90 has had an amazing life. You will claim your own back once this burden is released. Do the right thing and get your Dad into Hospice. I was scared too, and it was the best thing I ever did.
Hospice will help you with grief counseling too. You are working yourself up into an emotional frenzy, when the reality is Dad has lived much longer than normal. Stay strong and you will make it.
If there is a hospice house in your area, you should visit and see if it would be a good fit for dad. It was the best choice for me when it came to my husband's final days. A lot of stress and responsibility was lifted from my shoulders.
Be brave and strong for the both of you.
Moment by moment.
Meditate (watch Rick Hanson, Ph.D., Buddhist scholar on Zoom - Wed nights 6pm).
Get a massage.
Be in the grief and sadness. Don't hold anything in. Process through it as you need to.
"Try" to reframe the guilt as a waste of the time you have left to be with your dad - to be fully present. If you cannot witness his passing, you DO NOT have to.
Let this 'crap' go: "I feel my family, who are all far away, expects me to be at his side starting right now ..."
You do what feels right to you in the moment. Your family may project all kinds of feelings on to you, including their own GUILT for not being there. Dismiss it immediately by talking to yourself with pep talks. "I am doing the best I can and I know it. This is hard for me, too. They aren't here, I am.
You need to do what is right for you. Do not allow them to take your personal power away nor allow yourself to 'take in' whatever judgments they may have about you. Be very self-compassionate and self-loving. You need 'you' now.
Get support from wherever you can -
Find moments of peace inside - shift to gratitude
Losing someone you love as you love your dad is difficult. Grief is - from my experience - like mercury. You can't get a hold of it. It moves in very 'out of mind and body' ways. The only 'way' to deal with it is being present in it.
Flow with your feelings.
Keep a journal.
Do nice things for yourself every day, no matter how small.
Gena / Touch Matters
My husband and I took care of my Dad as he passed from Prostrate and bone cancer with Hospice help! Then moved my Mom in with us and had her for two years. She was a stroke victim in a wheelchair. She was with us until she passed suddenly from another stroke. Then we had his Dad move in with us. While with us, while he was out visiting neighbors, he fell and broke a hip and never fully recovered. So again, we had hospice in our home to help as he passed.
Now we have my older Sister, who has had three strokes. She is physically strong and active, but her mind is slipping.
I have always believed that the caretaker has to take care of themselves first, so they can take care of the 'patient'. You could maybe check locally for support groups.
A really good book is "Helping Yourself Help Others: A Book for Caregivers"
By Rosalynn Carter, Susan Golant, Susan K. Golant.
You are stronger than you think! And as the years pass after they are gone, you will tend to forget the painful moments and remember more of the good memories!!
And you will be glad that you found the strength to do what you're doing now!!
Sending you hugs and good thoughts!!
I understand you more than I can say, and share many of your experiences, and fears. Whatever you'll decide will be the right thing.
By how you are writing about this, you are very close to your feelings and have a deep honesty and awareness about them, this is a strength not all people have.
I don't have an answer to all your (very reasonable) doubts and fears, but I'm writing here to share what is helping me a lot, which is seeing Death from a totally different perspective.
https://www.youtube.com/@EckhartTolle/search?query=DEATH
I will keep you and your dad in my thoughts.
You are both not alone, your message has touched many souls far from where you are. We are all together, all interconnected, in space and... time.
Many blessings.
The hospice social worker was very nice to me. I broke down and she talked with me for over an hour on the hospice sun porch.
It helped.
It is okay to give yourself a break. I was in charge of Mom for 6 years. I had caregivers cover for Mom and I took a 14 week break. I needed it. I did not step foot in the house for 14 weeks. Things ran ok.
I was not present when Mom passed in physical hospice. She passed away 5 minutes after I left. She was in physical hospice for 12 days. I stopped by every day. Sometimes I stayed for 30 minutes sometimes I stayed for a couple of hours. I had given 6 years of my life.
Mom's local church was really good to us the last 6 months. The pastor was a nice guy and offered a lot of support when we needed it.
Your Dad can get hospice care at his long term care or your Dad can be moved to physical hospice building.
Mom was in hospice for 18 months in her home. When hospice wanted to start administering morphine I had her transferred to physical hospice.
Physical hospice was very calm and peaceful. We were allowed to bring my sister's dog there. I was very happy with my decision. There was a social worker that talked to me for around an hour. There was always an RN on duty.
I was very happy I moved Mom to physical hospice.
This is not what you should have been dwelling on then.
This life...this time between the "nothing" that is before we were born and the "after" when we die is what you should be focused on.
You are incredibly lucky to have had a dad like yours. Not everyone does. (Just read some of the posts here and you will see)
Your goal now should be spending time with him, letting him know that he was a wonderful dad. Thank him for giving you the best life that he could. There is also a good possibility that because your dad was older that allowed him to be the best. He had a maturity that your friends dads did not have.
You do not mention if you are married or have children but if you do your children are also very lucky because you have and will continue to pass down the good that your dad is. He will always be with you. In your heart, in your head. Trust me you will hear his words come out of your mouth from time to time. (Trust me on that, my Mom has been dead 60+ years and I still hear her) When you laugh I bet your eyes crinkle just like his, I bet you dis like the same foods and like the same kind of ice cream. I could go on but you get the idea.
You have been taking care of him for a very long time. I bet you even started taking care of him before he actually needed you to take care of him just because you have always been of the mindset that you are going to lose him.
Anticipatory grief is one thing I think yours goes back further than that. If you have not talked to a therapist or counselor you might want to think about it.
Or reach out to the Hospice Social Worker and ask if they can set up a meeting with the Bereavement Counselor. It would be unusual to do this before a death but I think the Bereavement Counselor might have some insight that might help.
((hugs))
Thank you for your very kind and helpful words. Just being heard and understood helps enormously! I should probably find a therapist, but I have no idea how I can talk about all of this with someone because I just start sobbing, hence finding this website so I could just type it out.
Thank you again <3
I think the morphine helped most.
Think of it this way. Your dad wants “out” (mine did too) and might be angry at anyone and anything preventing him from getting “out.” He might phrase it as “going home” (mine was the same) or he just wants things to be like they were. You know that taking him home wouldn’t solve the problem and things can’t be like they were. He wouldn’t be any happier and it’s just not possible for you to do. It’s a hard, cold FACT. It felt like the hardest thing I have ever done (a few times) to tell him the truth that I knew he would hate. But no one else was going to do it, so I had to. I hope someone will do the same for me at the end. I said it as kindly as I could. (“You can’t go home because you keep falling and hurting yourself. Your legs are too weak to stand but you keep standing anyway. Mom can’t help you off the floor and can’t stop you from trying to stand.”)
Death is the only way “out” of this situation and it is near.
You did nothing wrong. You did all you could. In my view, you went way beyond. You are a good daughter.
You can and will survive it. It may seem impossible right now, but everyone does. You will too. I wish you both peace.
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.