Oh gosh. If you’ve read my other recent thread you’ll know what I mean when I say this life is super tough right now. Whole ‘nother situation here.
So my mom was diagnosed with Lewy body and Alzheimer’s recently. Her fine and gross motor skills are declining and after she suffered repeated falls at home she went into 6-7 weeks of rehab at an SNF after a hospital stay. After touring some smaller adult care homes the family decided to bring her home with additional hours of home care from an agency that we’d started using last spring. She’s been back home about a month and although we have great aides (self pay) and PT/OT temporarily through Medicare, she has become largely bed-bound.
My dad went into cardiac arrest today while the PT and aide were there and working with my mom. He’s survived the initial event but was without a pulse for an extended period. He’s in the ICU now.
It’s a welter of emotions and a highly dynamic situation. One question that’s coming up is what happens with Mom because regardless of the outcome here, Dad will not be at home for the hours when the aides aren’t there anymore and she should not be alone.
While waiting for the doctor to come talk with us today I called the family care home we’d liked the best and lo and behold they have a bed opening up in the next two weeks.
Here’s the wrinkle. My younger sister seems to indicate she wants to move in with Mom and have that be the option. She says she can work remotely and schedule on-site tasks for her job around when the aides are there so she can leave for short bits. She mentions that her rent is fixing to go up by 40% in July and she won’t be able to afford it.
I know a couple years ago the idea of this sister (I have two) moving in with my parents was floated and Dad didn’t want it. He won’t be there now. She’s a clutter bug and has a social life, and financial issues. Maybe it’s a good option. Many people do it that way for a time. But what happens when Mom dies or must leave? Then Sister is still in the house and what would happen if she isn’t able to support herself in order to leave? My parents have been giving her some financial support for a long time. She is a kind-hearted, wonderful person, a real hands-on helpful person who has been going over 4-6 hours a week already for years to cook and do other things for them.
I don’t know. We’ll have to figure something out. I was excited about the adult care home opening when we heard, but maybe it makes sense to meet two family needs at once: Sis has an affordable place to stay for now and we leave Mom at home which is familiar and where she wants to be, and she loves her aides and gets good care from them.
I feel strange posting this. It’s a weird time of life right now. Maybe I just wanted to let things out. 😥
It's good that she has a job and plans to continue doing it. Does she have the self-discipline to save the money she won't be paying for rent, so that if your parents do need to go into care, she'll have what she needs to go back to living on her own? Or is she just going to fritter the extra away? Not something you can really control, though. But it might be well worth it to the family to chip in to help her get re-launched after she has been helpful with your parents.
And be careful to avoid "gifting" situations, as defined by Medicaid.
Sorry about the stream-of-consciousness, just tossing out ideas. You must be feeling overwhelmed right now.
I agree , your parents also need to be careful about the gifting , should they ever need Medicaid . I suggest speaking with an eldercare lawyer .
When it rains it pours for you . Sorry .
You have valid concerns about moving sis in with mom. Sis's social life would take a hit; can she deal with that?The idyllic idea that sis can come and go for her job - well, it may not work out the way you expect. It would be a tremendous strain for sis to move in with mom in the first place, and I suspect she isn't prepared for being a basically full-time live-in caregiver. Even with hired help, it quickly becomes exhausting because home is not really a home in that situation. It's a home-based nursing home with all the sights and smells that go with it. I'll never forget staying at my dad's house and the newly hired second-shift caregiver from another culture was cooking something that smelled like fried iguana in the kitchen directly below my room around 2 a.m. No more sleep that night! The aroma hung in the air for a week.
Then, what to do with sis when mom passes? This is where the family relationship begins to unravel. Can't hurt sis's feelings, everyone is grieving, losing two parents at the same time, house needs to be sold, she can't afford to keep it up, may no longer have a job, yada yada yada. Plus your idea of solving two family needs - nnnnnnooooo. Sis's need is her own need to solve. Not the rest of the family's. All I see is unsolvable problems down the road if she moves in.
The bed opening in the place you liked is a sign from St. Luvya that mom should be placed there. Home caregiving is often not sustainable for the long haul, especially when wonderful sister is about to lose her mind after she realizes what she's taken on.
I’m actually fairly worried about what will happen to my little sister when her rent goes up and when my parents aren’t able to help anymore. She’s an amazing sister and a hardworking person who doesn’t deserve to be homeless or anything of the sort. 😡
My dad was at home when he said he wasn’t feeling well, sat down and slumped over. My mom’s favorite aide and her PT were present at the time and saw what was happening. Neither of them attempted CPR on him. The aide told the PT to call 911 which he did. The PT then makes some comment about working overtime and hands the 911 call back to the aide and then leaves! Walks out!
When we heard about this my sister and I were like wtaf.
So is this just my grief and anger looking for an outlet, or is it reasonable of me to think that the PT should have stayed while my dad was flat on the kitchen floor with no heartbeat? It’s my understanding that agencies have differing policies about whether or not the aides are supposed to attempt CPR or merely call 911 and wait. The aide told me on the phone that she didn’t do CPR because you have to have two people to do CPR which I don’t think is actually the case. But I’m especially astonished at the PT’s callous behavior and I’m not sure I would want him to come back to the house after that and be my mom’s PT anymore. She would probably be fine with keeping him on. My mom is like that, forgiving to a fault. 😡
Prayers that your dad recovers and the family finds a way forward.
I, personally, would be livid if the aid nor PT provided any assistance beyond calling 911. They are lowlife scum bags in my personal opinion. I would make a giant issue about this but, that is me. Who walks away or stands there with their finger up their butt when they should have the training to assist? Heck, who does nothing even if they aren't trained? This is heart breaking.
As far as your sister moving in, is she really prepared for the reality of being a live in caregiver? It is the hardest job on the planet and truly does consume your life. If she understands this and wants to give it a try, why not.
The aide, if from an agency I would call them and ask what is the protocol for CPR. I just read that PTs must know it too. So there is your two people. I would call the agency who sent out the PT and tell them what happen. I think both these people were unprofessional. Why did the aide not call 911. Why did the PT guy walk out in an emergency.
We don’t know where he’ll go from here yet but we have time to figure that out, with a case manager, and it’s looking a heck of a lot better than it looked 24 hours ago. 🥲
Have a steely adult conversation. You may want to say - This is a difficult time but a relatively temporary one compared to our precious future with one another, so it's important that we have a clear understanding, as best we can manage, of how to go forward.
Even if there are documents about ownership of your parent's home, ask about their ideas regarding the house after your parents death. You must all 3 be together for this conversation. Afterwards write down what you remember about the conversation for future reference. Or you might want to provide pad and pen for each of you during the conversation.
Important points that may need clarification:
1) In the event your parents die to whom will their house belong.
2) Do you each have copies of documents regarding this?
3) Would your sister change these documents? Can you sign off now that these documents are understood and agreed to by each of you (if there is such a thing).
4) Would the one living in your parent's home be in charge of bills and have access to mom and/or dad's checkbook?
5) Do you believe your sister would be amenable to the suggestion of depositing the same amount of money she is currently paying (and will be saving) in monthly rent and utilities for the entire time she lives in your parent's home in order to build a nest egg?
6) Can you be the designated person to have all of mom and dad's mail, bills, med. statements and other notices sent to your house. After all it would be one less job for your younger sister.
7) Will your other sister take charge of check books, and bank accounts to be worked on by at least any two of you.
8) Does mom or dad have a car? Discuss what happens with those, and about insurance.
9) Does your sister have a car?
10) Discuss what will happen to the live-in sister/caregiver in the event your parent's home must be sold to cover intensive care.
In time, if the house wasn't sold to cover a higher level of care, the caregiving sister's part of the sale's profit, plus her nest egg savings, will give her better options later, it will be a great boost to her self-esteem, and it will preserve your relationship to each other.
Good luck.
Amazingly, my dad is doing great!!!! 🥲 he is off sedation and the ventilation tube. He is talking and responding and just walked 100 feet with the therapist!!!!!!!!!! I spent a restless night in the ICU but worth it to be able to speak with all the great practitioners at this hospital and to hold his hand and witness his progress bit by bit. He was unconscious at first, and I thought he could be brain dead! He still has short term memories issues. He’ll be recovering for a while and my big concern now is if this happens again and there’s no one there to respond. He goes walking by himself on the trails, and if my mom goes to a facility he should not live alone. We don’t know what caused it, it wasn’t a heart attack (blockage), the EMTs said they found him PEA so he might have had a stress reaction that activated his vagus nerve to slow the heart rate which lowered his blood pressure….? Had a similar, shorter lived incident end of January.
I have fired that PT she had coming to the house. My mom had already complained to the agency about him just two days ago, not a good fit. A colleague mentioned an organization that knows of an agency that offers dementia-focused PT so I’ve left them a message.
what a roller coaster! It’s looking tentatively good right now. 🥲🙂
And was able to bring up a bunch of points, pros and cons and considerations, and she was briefly offended at the suggestion that she might agree to put any rent savings into building a nest egg, was I trying to tell her what to do with her money? Was I saying that she would just blow it? but I managed to depersonalize that idea, anyway, it was a hurried conversation because the transport van was coming for my mom to take her and my sister back to Mom’s home from her visit with Dad at the hospital, and we had other things to discuss as well. But at least we’ve started the conversation now and it went halfway decent. ❤️❤️❤️