I’m everywhere in emotion. Friday my dad’s lung dr said his COPD progressed and gave me a hard stare as he asked if we had an advance directive. He’s not putting a time on him, he ordered a CT but now I’m dealing with a depressed dad who now has an “excuse” to spend more time in bed. I explained to him that the less active he is, even just staying awake and doing some chair exercises is better than nothing, the more his lungs will get exhausted easier. I asked him to please try to stay around so I can get a job again, hire help for him during my work or sleep hours, and see about reintroducing myself to the working world after just being his caregiver for so long. I asked for 3-4 months at least. I know it’s laughable to negotiate with a failing body and brain but I’m desperate. Without him around, the basic living expenses etc are down to just my boyfriend’s income and rent these days is stupid high and then they ask for 3x the amount in available income, which is ridiculously unfair. Long before my bf came along, my dad and I agreed that he would cover basic expenses (no fancy clothes, trips, foods etc & only necessary medical or dental not covered by insurance) on his retirements and I would provide the caregiving and all its jobs, from grocery shopping to bill paying to hospital care and all points in between. He actually is a rare senior that has good benefits & no debt other than yearly taxes now. When he needed my full attention, I stopped working my massage job & thought I’d be able to work nights somewhere. That didn’t happen so he said that he was fine with providing for me while I took care of him. In a way, it’s the same as what he had with my mom: he worked & she did all the “homemaker” stuff. But through the years prior to her death, he’s paid a lot out to all my other siblings that just kept coming back with their hands out, not one dime paid back & meanwhile my mom kept spending his money on everything & almost every sibling & putting them in major debt and had multiple payday loans. Anytime I needed to come back home (twice), I had a job & paid rent/utilities to my parents only to see that money being given to a brother or sister that “needed it”. I had been planning on leaving when my mom got diagnosed w cancer & died, leaving my father to me & I’ve done what I could to keep independent of him & his funds until I became his full time caregiver. I really don’t care about his money, as far as me being greedy or whatever. He has what he has because he finally stopped spending thousands of dollars in gambling every month, once I broke it down with him. But he never prepared for his end of life prior to 2017. I know once he’s under hospice care it’ll be quick because he won’t be doing dialysis anymore. I just need a little time for my money pool to get re-established. He says but what about the life insurance money, as I’m his beneficiary, and I explained that it doesn’t come right away & I can’t just sit in a house I can’t afford (we rent) while that happens. He asked what about the money in the bank, I said I can’t rely on that because depending on care level, that savings will go to your health care if you don’t go into hospice right away. I said if you go into a nursing home, that’s usually not covered by Medicare & that’s what your savings will cover. He wants me to take some of that money now but I told him I can’t & that it’s best just left in his account. I understand he just wants me to be secure but I still want to do that on my own.
I feel selfish now that I want him to live a bit longer when before I was just wanting it all to end. I hate this part. I hate the not knowing the time. I hate packing up a house that I still want to be his home until he dies. I hate that he probably won’t get to walk me down the aisle. I hate that I’m still a bit in shock. And mostly I hate that I just want to pull the covers up over my head and wait there until it’s over, just like a frightened child.
Please sit with your grandfather and explain to him that his doctor wants to know what happens "if". Does he want a ventilator if he is unable to breathe? Does he want it to be removed and to be medicated until he passes if he cannot breathe on his own after a certain period of time? Does he want CPR if he dies? Does he want someone to pound on his chest to get him back?
As to your wanting him to "stick around" I would concentrate, when speaking on your wishes, as you state them, that it hurts you to see him give up, that you want him not to suffer, that you hate the uncertainty of his illness, that you wish to follow his wishes, that you feel selfish and needy in wanting him to remain here for you, but you cannot imagine life without him. I would leave your's and your boyfriend's money concerns out of the conversation; I feel you will be badly judged by this. Where we go in our own minds, with the realities and fears of our daily lives, is often best left in a therapist's office. They will reassure us that our thinking is not unusual, is not evil, is not selfish, but that it is normal.
As to hospice, I hope that you fully understand that if you do not pass in the 6 months the doctors guess-timates you have left, they will not kill you. In fact in most cases they will reassess you and they will give you more time and support. That's a GOOD THING and it is paid for by medicare.
You have no control over this, AK. It is on you now to do the best you can, you AND your boyfriend, to provide loving support, to get your own jobs and save as best you can. You have my sympathy and my concern. But do ask your Granddad what his wishes are, and see to it that you carry them out for him. If he is exhausted then leave it be. You cannot imagine what it is to have no breathe to do the simplest thing, but you need to try to.
I know how hospice works, as my mom died over ten years ago and we used hospice for her. I already know hospice is end of life care and insurance won’t pay for him to be in hospice AND continue dialysis because dialysis is for prolonging life, that’s why he will go quickly. Not because he’s in hospice care but because his body will definitely fail without dialysis.
This site is supposed to be for support, so implying I need to take it to therapy is a bit rude honestly. My bf does work and we plan to live together after my dad dies..I was just venting my concerns over having the time to make money to make that possible before he goes. I didn’t actually ask for any advice in my post (I didn’t frame anything as a question) but Heaven forbid anyone be concerned here about life after caregiving, including money! As if that makes me evil. I already acknowledged I feel selfish for wanting time I may not get. If I’m wrong thinking this was a safe place to vent anything here, then I guess I just won’t write here anymore. But just a note: therapists may be trained in this, but we are Living it. Like minded people come here for support not therapy, though it can be therapeutic. They come to know they aren’t alone in their fears etc.
I would recommend setting up a joint account, that way you can have access immediately and it is still available for his care if required.
My dad did payable on death and BofA takes 6 weeks or longer to get the money sent if you don't have an account for transferring it to. Thank God I didn't need that money to cremate him.
So, I would recommend getting it set up in a way that protects you and him. He wants to know that you are going to have a roof over your head when he is gone. Give him that gift.
I have an old coworker that has COPD and it is painful to have a conversation. She can't talk because she loses her breath and everything is a challenge but, she says that she has to just get up and do the very little bit she can or it gets worse. So my heart goes out to your dad.
I pray that you find a good position and that you all find peace and comfort and strength during this difficult time. Great big warm hug! This can not be easy for any of you.
ELeven pain filled days later, he died. 36 years later I still feel guilty for making him prolong his life. Be careful what you wish for. Hugs
COPD is such a difficult thing to see our elders suffer through. He may have more time; people do adjust amazingly and compensate longer than one thinks. The doctor may have just been suggesting advanced directive, because eventually that will be needed. You honestly cannot go to the hospital for ANYTHING nowadays without their asking for a copy of your advanced directive.
Good luck, and I wish you both the best.
Wishing you the best.
BofA takes 6 weeks or longer and you have lots of paperwork that they require to be filled out and processed.
Being a joint account holder means that you both own the account and you have immediate access, however, it is not considered gifting unless you use the money for yourself. The money sitting in the account is still dad's declared asset until death.
My dad is a bit more himself today and we talked yesterday about him at least trying to make it to his birthday in early November. His dad passed when he was 88, so I think he may like that goal to live until 89. But yeah, it’s definitely about his quality of life going forward; I saw how we struggled to provide adequate care for my mom. We just didn’t know better, even with hospice help. We weren’t prepared and she was in a lot of pain & delusional on the pain meds, asking us to move to Oregon so she could have assisted suicide. Now I have much better knowledge of the steps, just have to get comfortable with the rest of his journey. I have no doubt that if I see his struggle, I will let him go with grace.
Apparently I speak a language that you have a difficult time understanding.