My understanding (I haven’t had this exact thing come up in my practice) is that the Advanced Healthcare Directive (or living will) is a guide for the HCP, unless the HCP can’t be located and then the hospital will rely on the Advance Directive. Imagine a scenario where you are on vacation and unreachable, and a decision needs to be made to intubate or not, which needs to be made quickly. Typically once the HCP is located, they can make decisions that go against the Advanced Directive. If your parents have strong feelings one way or another about what care they want or don’t want, its worth discussing with your lawyer.
Ugh, I got the paperwork filed yesterday afternoon at my dad’s PCP office. The clerk was extra amazing and kind and got my info in to system as primary contact.
…about an hour later they called me to say my dad needed to back to the ER and get admitted. They had just checked some labs and were worried he was in “total systems failure.”
I really thought I was watching him die, but right now it looks like it’s NOT kidney failure, but rather he has a “severe compression of the T 7 vertebra” which was causing his pain, shortness of breath, no appetite, which in turn caused a ton of problem.
I had to enact the POA since he was in and out of consciousness, and it was fluid and reassuring situation due to that wonderful clerk getting those documents filed and in the system just hours earlier. God bless her.
I’m still waiting to hear back from the doctor. Due to COVID protocol, and due to her condition, it’s best for my mom to be stuck there with him, but I don’t love this dearth of information so far today.
You’re a good son and the parents are lucky to have you on their side.
A suggestion on having those documents available at all times: have scanned copies on your phone (maybe stored in Google Docs or Dropbox or something) so that should you ever need them, you have them with you without needing to produce the actual paperwork. I actually just checked to make sure I had done that for our household - and found that we don’t have our daughter’s directive in Dropbox (must fix that).
I did this.
So my mom had a delirium episode night before last and the hospital will not let her stay with my dad alone anymore. With her Alzheimer’s, she’s relied on him to be her surrogate brain, but in his diminished state, he can’t speak in a manner she can understand, so he barks at her, she gets her feelings hurt, and started leaving the room in emotional distress. The other night she was saying the devil had taken over her mind and was making her speak lies, was concerned about the “evil man” and was not aware where she was…it was bad. I’m juggling keeping her at my house and taking her to stay with my dad. Yesterday we spent all day having my mom checked in the ER because her doctor wanted to rule out a stroke. I’ve really got her calmed and we are doing ok, I’m just worn as thin as it gets. I’ve lost 5 lbs in a few days. But I did get a good night’s rest last night.
We’re hoping my dad will improve enough to go into skilled nursing. I’m hoping I can find a way to get my mom there with him so she can get the help she needs at the same time.
I’m sorry that you are going through this. I went through something very similar with my parents two years ago. And what I can tell you is to be prepared for things to move quickly, a problem that you are trying to solve today will be overcome by events, and a new problem will become the next issue - getting them into a care facility will likely be final step, so yes, do plan on that ASAP. The only place in my parents town that could take them both had a waiting list, so my dad had to go to a assisted living home (sixty miles away) on his own, there was simply no way for him to remain home. Hopefully the facilities in your area have more capacity. Looking back, we probably should have worked on that a year or two in advance, but they were fine until suddenly they were not. You are a good son, but most people don’t have to do this more than once or twice, so it’s new to almost everyone. Do the best you can, and don’t feel bad if you make a misstep or two because of fast changing events.
Edit: Some facilities can provide short term (perhaps a few days or a week) respite care to give caregivers a short break. Remember to take care of yourself too.
I’m sorry you’re dealing with this but glad your parents have you to lean on. It’s a very hard row to hoe, but you’re doing great, and parents must be very grateful to have you on board. Do you have any siblings? Dealing with tough stuff is hard enough; doing it alone is exhausting. I hope your fiancée is wonderfully supportive.
If you need legal help–for instance, one parent needs to be in a nursing home, a ridiculously expensive proposition–I suggest an eldercare attorney. This stuff gets complicated, and it’s helpful to have someone who specializes in your kind of situation. My sister got an eldercare attorney when her husband was first diagnosed with dementia, and it saved her, period.
Blessings upon you, and best of luck.
I’m so sorry you’re going through all of this. Please suggest that anytime your mom is evaluated due to changes in her metal state that they look for a UTI (bladder infection). It’s amazing how dramatic an effect a UTI can have on the metal state of elderly people.
Seconding that :(.
My parents are both gone - of various cancers; they were both mentally OK until the very end, so we did not have that kind of issue to deal with, at least. My husband’s parents are in their mid 80s - and live a thousand miles away, and have no means to pay for nursing care. I know the siblings are going to be having some very difficult conversations in the near future to try to prepare for things.
I can very much relate to your situation. My mother had dementia and my father had heart issues and diabetes. I lost them both within 3 days of each other last year due to COVID.
I don’t have much advice but I’ll reiterate that having your documents available to you from the cloud is an absolute godsend. I was surprised at home many people needed a copy of the POA even though I’m sure that no one actually read it as was mentioned upthread.
You probably know (although I didn’t) that the POA will expire on your Dad’s death so make sure that the will is in order and up to date.
Best of luck to you.
Will most places take scans/faxed? I need to get these filed in a bunch of places ASAP–the bank (I’m going to have to become involved in the finances) and his other doctors such as the urologist and his heart doctor. I’m also going to have to gain access to his home alarm system/codes and things of that nature. He’s still not really able to talk much so he can’t answer any of this stuff. I want to secure their home while we are away.
Right now we are waiting to be discharged either into a skilled nursing center or home for hospice care. How much he improves in the next few days will determine that, as well as the cancer test.
My mom is a 24 hour a day job that I cannot keep up with much longer. I really (honestly) need coaching or a help group or hotline…She’s never been faced with the entire grotesque gaping maw of the disease until now. She just talks. Just all the time.Talks talks talks talks talks talks. Asks so many questions. She’ll ask the same question because she forgot by the time I got to the end of answering her. She needs constant reassurance. Constant upbeat optimism. She’s also extremely hard on her self, blames herself, feels inadequate…low self esteem…so she’s utterly stuck on my dad being not in his mind, unable to speak clearly and yelling at her. She can’t remember he’s been sick for over a year. She keeps saying “he was just fine!” and I just can’t get any facts to stick. NOTHING sticks. Well, anything negative and emotional at the same time will stick. She gets stuck in negative thought loops and I pull her out of the spiral and get her done and she starts lavishing me with compliments until she gets to the bad reasons why she needs me and down we go into the spiral.
I’m barely holding it together. I am AN INTROVEEEEERT. I Mean waaay introvert. I’ve always had a big buffer between her and I in the form of my dad, and she’s a handful. She cannot be left alone for more than a few minutes.
I never had any issue with any delivery mechanism. I think I emailed the majority of them but a couple did ask for a fax. It can be a pain since they’re several pages long and not everyone has good access to a fax machine. They may not be an issue for you. Emailing from the cloud is easy peasy and can usually be done from your phone or computer. Unless you’re averse to email, if someone were to want me to fax something to them, I’d ask if email were an option since it can usually be handled right then and there.
Have you asked the doctors’ offices if they know of local services that can help out families in this situation? The hospital may also have a social worker who is up on such stuff (when my daughter was in the NICU, and I was still inpatient, a social worker interviewed me to see if we needed assistance). Your county may have an office dealing with the elderly. Your employer may have an employee assistance program that can help with the research as well.
It is overwhelming to a degree I can barely imagine - my parents were (as noted) both “there” mentally until the end; Mom handled Dad’s stuff as efficiently as she always did, and my brothers had the medical power of attorney (only truly needed the last couple of days, and Mom was in the hospital already), so I never had to deal with any of that.
HHS has some links: Resources Near You | HHS.gov
This. They can help (or tell you where to find help).
I know you need help right now, not platitudes, but all I can offer is sympathy.
And try to schedule some time for yourself every now and then. A hot cup of coffee, a nap, whatever comforts you.
The skilled care facility we are transitioning into said email or fax would be sufficient, so this is great. I can use a fax proxy online or pay for a fax app. This is really helpful and beneficial information to me, so thank you. One less thing to keep track of.
Sigh.
Unfortunately, our state doesn’t have much in the way of mental health crisis help. She can be placed under a psych hold but she would require absolute sedation or she’ll spiral deeper into a pandemonium. She’d also be housed with people coming down off drugs, schizophrenics, etc…not a healthy situation.
I spoke with her doctor, her neurologist, our care manager at the hospital, the ER doctor, and the mental health evaluator and the social worker. There USED to be a place for exact situations, but as it is now, they just keep asking for a family member I can leave her with who she trusts.
I’m the only person.
There are some over 55 memory care places who do short duration holds but she would be required to be evaluated and must be in a state of delirium in that moment to qualify.
As it is, I just have to take as good care of her as I can while I do my best with my dad. He’s getting the short end of the attention stick but that’s only because he’s already under professional care and the attending Dr. said they can deal with him and he’s in good hands and I can deal with my mom.
We have daily visitation protocol in order but it’s a massive hassle as the house supervisor has to note on the visitor log I am allowed to escort my mom into the room.
Normally this isn’t a problem, but I have two siblings who are being the opposite of helpful.
I have a real brother who is much older who should be doing this. He estranged himself over jealousy that I was helping mom and dad so much about 11 years ago or so. “They need help. I’m helping. You can help too.”
'…I just think they LIKE you better and would rather you be there than me…"
Jesus FC go to therapy and get over it. Anyway, now that we are at the end he is demanding to be kept in the loop while also standing in the back going “ok well you’re really handling things well…” and not offering to help.
He has not and has no intention on visiting my dad. He’s declared him “good as dead” back in January when we started this heart failure diagnosis. SO, when we had to hit the ER a weekago today and have him admitted, brother had spoken to him that day and realized how weak and sick my dad sounded, and told me “he’s given him his final goodbyes.”
That night on the way to the ER, he called my adopted sister who is also in no way involved, told her dad wasn’t going to live another minute, sent her into a tailspin, she showed up at the hospital and made such a scene in the ER that she had to be forceably removed. She has zero interest in his life or well-being outside of drama. She didn’t visit or have anything to do with him when he was well enough to have company at home this entire year.
So, since my mom was removed from being able to sleep in his room, and since I have to bring her up to visit him every day, she has created problems by showing up and logging that one visitor. I told her not to do it again and every time she acts like I made up COVID, I run the hospital, I make COVID protocol, bitches me out (I realized she’s an alcoholic so she’s getting drunk at night and blasting me).
So the siblings are not only NOT helpful, they are actively creating more problems for me.
WHERE WE ARE TODAY:
Dad is more lucid and can speak more deliberately but the last two days he seems weaker and more out of it than ever. Today he seems very very unwell.
They’ve started him on supplemental oxygen. I have it set up for them to go into a skilled facility that specializes in AZL care, and, as long she’s not a flight risk (and she doesn’t seem to be), they should be able to at least stay in a suite together and I can come visit them daily with less restrictions.
I do not think my dad is going to bounce back. I think after a few days in the PT home, we should transition back into home hospice.
His heart failure is so bad he’s just too weak to speak, feed himself, swallow real food, etc etc…and now there’s a high potential for a liver cancer. We still cannot treat the crushed vertebra.
I need a few nights off from my mom. She does ok but she’s sundowning (new to me!) and last night she woke up in the night angry, tried to leave the room “to find a place to sleep where she was welcomed!” and after calming her down, I think she had been having some nightmares. It took until 5 am to get her to calm back down.
Thank you, it helps. Look guys, read above: I have no social or family circle, I have no help, I have no friends who can step up, I have my fiancee (marriage in October…how do I even plan for that…?). This thread and all of your kindness and advice has helped me to navigate something that I was dumped headlong into about a week ago.
So thank you and keep talking, I need it.
That’s just… fuck.
I lost count of how many times I said my “final goodbyes” to my mom before she passed. Half a dozen at least.
What he said. Siblings suck. They really do. I’ll post my own tale on that note below but that’s not terribly important for you right now - feel free to ignore.
So it sounds like you are expecting your dad to slip away soonish - between the heart failure, and the vertebra problem (maybe you mentioned in another thread?) and liver issues. What are the current long-term plans for your mother? You mentioned the facility - is that the plan?
My tale of how asshole siblings can make things hellish for the others: I had a lengthy writeup but it’s boring to anyone not involved; it boils down to someone who verbally and physically abused pretty much everyone in the family at one point or another, threw a tantrum and tried to force Mom to have medical procedures she had EXPLICITLY stated she did not want, and made settling her estate a nightmare for my other two brothers. He tried to enlist me to fight the other 2 legally (yeah, asshole, maybe you should have thought you might need my help some day, and maybe been just a little less abusive…).
Dad passed away 8/26 at about 2:30pm. The attending doctor called me Wednesday evening and said his blood pressure had dropped dangerously low (unable to get a reading, actually, Doppler put it in the 50s/3s0) and they had pumped him so full of fluids that they got him back up to about 70/40, and told me to get there ASAP because it was nearing the end. My mom and I were able to get there while he was lucid and they got a very wonderful goodbye. Chaplain was able to pray over him, as he was deeply religious. I’m grateful for that.
They moved us to a comfort care room where we waited overnight. Early in the morning I MADE my brother visit, as well as my adopted sister and two nephews. He expired in peace with my mom holding one hand me holding the other. It was as perfect as it could be. I didn’t know how hard I was going to cry.
He had an unknown cancer. He died in the oncology ward. His blood was acrid or toxic or whatever measure they checked that told them a cancer was causing liver and kidney shutdown. All this time we were chasing his heart failure, so cancer is a pretty wild curve-ball at the end.
I now have to dig into his finances and figure all that out, but I have accessed his will and other info. I called his financial advisor (retirement) and it looks like he has a nest egg to cover my mom, and there’s apparently a life insurance policy. I am going to meet with his retirement planner and my mom to discuss that stuff next week, and will take his bank the POA forms so I can help my mom transition financially (I will have to take care of her finances).
It look like the will was done and that’s great, and life insurance and retirement plan–all great, all a relief (we didn’t know!). However, there’s a safe deposit box key with a number but no information about what bank it is. He also told me directly they have a funeral fund set up but I cannot find any information about where that might be or how to find it.
Otherwise I’m doing a good job holding it all together and getting everything squared away. Really wish I had info on the lock box key and the funeral fund…my mom obviously didn’t know and/or can’t remember.
I’m so sorry. Glad you were able to be with him. I’ll be holding you and your mom in the light.
Sorry. It’s been a rough month for you.
I guess call around to local funeral homes to see if they have any record of an arrangement for your father. Hopefully a bank account was held jointly or payable on death. Right now these two items are the only urgent ones, everything else can probably wait. The POA is useless now, the will and/or beneficiary designations now come into play. I hope your mother fares well in these next few months.
If I was correctly informed on a previous job where we did have to ask for documents to be faxed, you can go to faxzero.com, upload your documents, and have them transmitted to the recipient’s fax line at no cost.