I wrote this in November of 2021 but never published it.
I received news the other day that my dad was not doing well. He already has Diabetes and Parkinson’s disease. A new thing he has is Gastroparesis. It’s a condition where your gastro track basically freezes up. You cannot digest, therefore you vomit. His weight is down to 116. That’s less than I weigh. He has also gotten to the point where he can’t tell if he needs to go to the bathroom so he has accidents. My mom is the one who is having to deal with all of this. Having to clean him up.
I am traveling to visit them in a few weeks. I am terrified.
Not so much because he might actually be dying, but because I don’t want to deal with my dad’s vomit and poo. I’m afraid that I’ll be expected to help…not because my mom expects it but because duh. Of course I’ll need to help. Not helping would seem selfish and cruel to my mom, and my dad as well.
My mom says his dementia has gotten worse. I think it fluctuates. There was a period of time where he really couldn’t keep any food down for several days. She says that during that time he got real bad…coulnd’t tell if it was day or night, mistaking objects for pills, asking her the same question over and over again.
I talked to them on the phone for my birthday and he seemed the same but asked me odd questions. He knew it was my birthday and asked me what I was going to do. I said out to dinner with friends. Then he asked me if I was going by myself.
I haven’t really had a chance to talk to my mom. We have texted, but she is always busy with him. The past month it’s been like this. Several days before I left to go visit my cousin to bury my aunt, I did talk to her on the phone. I asked how I could help. She said pay some bills. I told her that we had 4 days to get that done, but that I could certainly help. The last day I needed to pack for my trip, and the following day I was traveling so I could not help during that time. I said all I needed was to know the names of the bills that needed to be paid, and then we could get together and do a screen share and I could pay them with her watching. She could not manage to get me the names of the ones that needed to be paid in that time. I even said we don’t have to do a screen share….I’ll just pay them. But she couldn’t manage it. So I left for my trip and now I’m on the way back and as far as I know, those bills still have not been paid. I have no idea what is going on with them.
I guess when I get home I’ll log into their accounts (I have the following day off) and see if I can tell which ones. The thing that worries me is that maybe they have already been paid via check and are on the way. I guess tonight I’ll text mom and ask if the bills were paid.
I’m not so much worried about my dad dying. Actually, I kind of want it to hurry up. He is a huge burdon for my mom. Even though he does have Parkinson’s, he can still get around, feed himself (when he feels like eating)- although he has never cooked. I just feel that getting it over with would release her from the stress of having to take care of him.
I am also terrified of what would happen if he needed long term care. I’ve been trying to navigate all this stuff from afar and it’s really difficult. I’ve been trying to get my mom to update her will and trust for years now. This last year I really tried…..really really hard, to get her to get everything in order, but I just couldn’t manage it. I tried to talk to a lawyer, then I set her up with a new one which she didn’t like. Then she picked a new one and had a meeting and she was supposed to get back in touch with him, but didn’t. Why is this so difficult? It just feels impossible.
So as of right now he has no complete will or trust – the one they have is 20 years old and is severely out of date, not to mention incomplete in that the docs were never notarized or filed. The power of attorney is signed, but not notarized. Evidently it needs to be filed with the county courthouse if real estate is going to be dealt with, so yes that should be done. The lawyer said that he would not do a power of attorney if he could detect that the person had dementia. Well shit. So how do we get that done? I guess find a friend who is a notary? I’ll have to ask her which of our family members is a notary. Maybe that is a way.
My cousin also said that a hospice consult might be in order. I mentioned it to my sister and she said she hoped it was not to that point? But what if it is? It should be checked out just in case. So I need to set that up.
I had been trying to get some services set up to help mom out. My work started offering this brand new benefit for caregivers called Wellthy which seems amazing. Almost too good to be true and the timing was really kind of miraculous. They help caregivers coordinate care. Did I manifest that?
Did I manifest his rapid decline…possibly negating the need for all this long term care stuff that I was so terrified about?
It’s starting to look like my ideal situation – my dad dying first, is going to become a reality. At least that’s good?! What a horrible thing to say.
It’s not so much that I’m upset about him dying. I’m sure I’ll be upset when it happens, but I’m way more stressed about the coordination of all of the stuff surrounding it. Managing his care. Getting mom some help. Getting bills paid. Getting mom power of attorney. I know that I’m supposed to be the executor…I know it’s my responsibility to handle this stuff.
After he dies, I know there will be tons of other stuff to do, but the feeling I have right now is of impending, confused doom. Is he bad enough that he is actually literally dying? Will he stabilize? Do we try for hospice or keep trying for home health care? You can’t have both. This sucks. We need socialized medicine. We can’t even get him these gastro tests that are needed because he’s not stable and can’t keep anything down. I think he should be in the hospital and told my mom as much but she says he doesn’t want to go so she won’t do it.
I got to thinking the other day that even if I were able to get my mom power of attorney and it does give her the power to do stuff, if she thinks or he says he doens’t want something she won’t do it. That kind of negates the point of a power of attorney. If she’s not going to make decisions that are in his best interests unless he agrees then what is the point?
I’m afraid that I’ll have to stay longer than I had planned. I have a dr appointment set for right after I come back that I can’t change. It takes me months to reschedule that. I would have to come back briefly then return. I mean I can work from there, but working from there is so incredibly stressful and difficult. I don’t know what I could do to make it easier for me. Find another place to work? Maybe the neighbor? I suppose I should investigate that. I need to talk to their daughter and tell her what’s happening.
After he dies, there would be a funeral, setting up bills so that I could take care of them, finally getting the will and power of attorneys in place for my mom, and dealing with all of his stuff. Which is mountainous.
I started this blog post by saying that his actual death is not making me sad or depressed, or really even stressed. Actually I think I’ll feel relieved that it’s finally over. When I tell people about this situation, I think most people assume I’m upset because my dad is dying. That’s not it. I feel like I can’t really tell them that the thing that is bothering me the most and stressing me out is the fact of all this other stuff. I don’t know what to do. How to organize. I don’t really have a plan. I feel discombobulated. Disorganized. That is part of the reason why I’m writing this blog post. To organize my thoughts.
I think I have a plan:
- Keep trying to get will in order.
- Talk to mom on the phone asap.
- Talk to wellthy care coordinator the day after I get back.
- Find a family member or friend there who is a notary. Contact them.
- File the document with the courthouse or county – whatever is needed.
- Talk to neighbor’s daughter and tell her what has happened. Ask if I can work at her parent’s house if I need to.
- Ask for a hospice consult.
- Talk to my boss and explain what is going on. Prepare to spend a good amount of time there if necessary – it might be necessary if he actually dies.
What do I do if he doesn’t die? What if he just keeps hanging on? Or does stabilize and gets better? He has Parkinson’s….he’s not going to get that much better. The diabetes is certainly not going to get better. I suppose the gastroparesis could get better. But how much better?
Worst case scenario is a situation where he does get better but needs long term care in a facility. What would cause this? If he got better physically but not mentally? Vice versa? How do we know when it’s time for a facility? This is the thing that we are not prepared for. They have no long term care insurance and mom has no power of attorney set up. I don’t know if they can afford it. I suppose this is the thing I’m most afraid of.
Damaged Person in Repair 