I know these questions are thoroughly discussed here, but I am feeling paralyzed--making this decision on my own, and feel unqualified and overwhelmed.
The main question is... whether to go with a more expensive AL facility that DOES transition to medicaid if money runs out, or go with a less expensive facility where mom could be self-pay longer, but that does NOT move to medicaid, and hope for the best?
A very short overview is that mom has dementia caused by NPH, normal pressure hydrocephalus, a form of dementia that does not necessarily follow the ALZ path. But, she is 85, and not in good health. I cannot really see her living many more years. I think she has enough for self-pay for about 5 years in a combination of AL and memory care--I think at this point she would be a mid-level support AL resident, but I would plan on that changing to needing memory care at some point, maybe soon.
The doctors will give NO long-term prognosis. They just don't know how long. I am, as so many are, terrified of running out of money.
She could be self-pay for another 18 months at the less expensive facility, even if most all of it was memory care.
My question: I have read many of your admonitions not to try to think too far down the road. I am also trying to keep too much emotion out of the equation--for instance, the more expensive AL facility has one-bedroom suites, and the other has efficiency apartments. Nice efficiencies, I think, but still just one room. Mom is and always has been all about her home--her decorating, her things; loves to just sit and enjoy looking at her beautiful room, and get lost in looking at all her things.
The more expensive AL facility is closer to my sister, and in the general neighborhood where mom has always lived. The less expensive one is on the other side of town, maybe 25 minutes away compared to 10. Worried this might mean far fewer visits from my sister. Also mom will be much more agreeable to moving "right down the street", though I know it won't matter in the long run.
It is possible--I am checking--that if mom moves from AL to memory in the more expensive facility, the clock is reset on the medicaid eligibility and she would need to be a self-pay in memory care for two years.
So, should I put her in the nicer and more expensive facility that will roll over to medicaid and re-evaluate after a year? And then possibly move her if necessary--say, if her dementia improves and it looks like a possible longer life?
Again, very hard to imagine my mom living more than five more years. Trying not to make an unrecoverable error in my choice. My gut says that it really doesn't matter, and that a re-evaluation will be necessary in a year or two no matter what I do.
I will no doubt be asking more questions in the next days. Thanks to any who wish to share their own experiences.
You're experiencing "Analysis Paralysis" right now, which is maddening. Here is an article on that very subject which may help you:
https://www.healthline.com/health/mental-health/analysis-paralysis
Best of luck to you!
The opinions of others often lead to even more confusion. Your long missive tells me that you have already thought of everything and are now on a hamster-wheel circling and circling. You are stuck at the barrier of "But what if" and let me tell you, having faced down a diagnosis if Lewy's for my brother, helping him to decide when and where to move, you cannot guess at all the "what ifs" you are missing until they pop up. And they WILL.
I can only tell you what I would do at this point. Your Mom is comfortable in her "own home". That is what was important for my bro as well. Therefore we chose the 2 room place for his last lovely things. He died 1 1/2 years after moving in, not having used the funds he had for at least 5 years. He was 85. We went with what would make him comfortable THEN, knowing he could live long and run out of money, hoping that at that point it wouldn't matter so much to him anymore. But it was all a guess. Then came sepsis from a small sore on his shin, and that was that.
You just cannot predict the future, and your writing shows us that even when there are choices, those choices aren't easy to make for someone else. Think about Mom and think about what she would want NOW, while it still matters to her, and go with that--would be my best guess.
I sure do wish you good luck. Try to look more that you are lucky to have these good choices.
Having survived cancer of the breast about 35 years ago I remember the CHOICES being the hardest part. Knowing you have to make the choices and live or die by the consequences. And the opinions of others just made the choices and options made it all the more difficult. I know how hard this is and I wish you the best.
And watching others’ AL fees be raised significantly without notice. Scary. 🙁
And a very good observation—that if she lives long it maybe won’t matter so much to her anymore. it would be another downsize of her remaining things, and maybe not so hard. Or she might not remember it anyway.
Thanks again! Good food for thought.
Choose the facility that you believe will provide the best care. Look past the pretty dining room and activity schedules and make sure they are providing warm and thorough care. In my case, I chose an ALF that was very close to my house but I had to monitor the care more than I anticipated. If I could have the opportunity again, I may have chosen a facility further away where the level of care was more consistent.
Your mom has a good chunk of money to pay for a long time in a facility. Pick the one you think is best for how she is now would be my priority. You don't know how or when her condition will decline. With my mom, I know AL is temporary and at some point she will need MC or skilled nursing, depending on what goes first - her mind or her body??
Best of luck!
A community of moderate to severe would be very hard on my mother too, and she would not participate in things. 😢
but having said that I was in the same spot with both parents not long ago. My sibs had died and I was three states away dealing with elderly parents who were crashing on many levels and could not be at home. At the time I didn’t even know if they had any money. I had looked at some facilities in the area, one stayed in touch with me as they want to stay booked up, mom had a bad fall, went from hospital directly to assisted living. Dad had moderate dementia and I was able to bambozzle him into the same place a few days later.
There is no perfect situation in these places. This place was more expensive but They’re all understaffed no matter how much you pay. In my case I was lucky. These folks did pretty good by us. After mom died dad moved into memory care in the same facility. He has since passed away after I moved him to my home state.
I don’t want to sugar coat it, it was still the toughest couple years of my life trying to wrangle all this.
I haven’t posted here in awhile but this site and many good people here were a great help to me. Good luck to you.
Go to the search question section of AgingCare and type in Choosing a Long Term Facility: Tips from a Certified Nursing Assistant.
You will see an article written by a CNA, Donna K. Woodward. that gives lots of good information on what to look for when choosing a facility.
There is another article on Senior Housing Options for Dementia Patients that is also informative. It is written by Marlo Sollitto.
1) Dementia doesn't improve unless it's not dementia at all (UTI, complication from a comorbidity) so plan ahead for memory care.
2) Planning ahead (at least for the next phase) will save your sanity. Not thinking too far ahead means you will be reacting vs. responding to the next phase of your LO's dementia. There are many and they present differently in everyone so no one can know your exact situation.
3) AL choice should be considered WITH memory care as it's the most probable next step. AL communities give memory care priority to their current AL residents over new residents. They don't tell you this, but they do. You are a cash flow to them and they don't want to lose that. If you choose a good AL/MC community, hopefully you or other family will be there often enough and audit the care being provided. Their sales people are lovely and will share the best case scenario with you.
4) Family visibility pays off. The more your family members visit, ask questions, complain when needed, the better care your LO will get. Sadly, the laws allow for a very high ratio of residents to care staff in most AL (California is 1 to 100) which is ridiculously high IMO.
5) Be wary of activities. They are only as good as the person in charge and the residents attending. In our case, they offered activities but they were poorly attended. Probably bc the residents wouldn't come out of their rooms unless prompted. It takes a very self-sufficient, social person to dive right into this. I was told that they would pair my mom up with another resident to go to activities with and show her around for the first few weeks. That never happened.
5) Do not go into a facility (unless its urgent) with thoughts of moving them to another facility unless you have tremendous cash flow - which you don't seem to have. Each facility/community charges a one-time non-fundable community fee: usually the equivalent of one month's rent. If you move, you will get hit with that fee again. They all do this. I don't know what it's used for. I suspect it offsets the time the unit was vacant.
I cannot speak to Medicaid, but I'm sure they have all sorts of rules and hoops to jump through that others here have answered.
Sorry to be blunt, but I'm an only child and have dealt with this system alone.
I can share that their policies and shortfalls in what they sell you can be mentally exhausting.
Good luck in your search.
I'll get back to you with the site name that helps locate these hard to find small places.
I was in your place 2019. Mom who will be 95 in June was a handful. Three years before placing her, she had caregivers. She only liked one and the rest were let go.
She didn’t like anyone in her house at night because she said they were stealing from her. She would have panic attacks and call911 thinking it was a heart attack. When the Paramedics were coming two or three times a week, they suggested it was time to move mom to a safer place where she was taken are of around the clock.
So began the search. After visiting 7 facilities, we chose one close to us. It was a new facility. Everyone was sweet and kind and her room was lovely. But after a week of her banging her walker to get out, pulling the aides hair, scratching them and finally escaping, I needed to see what was going on.
well, there was no activities or interaction with the residents as promised. People needed the restroom and no one was there. The placed smelled of poop and urine. Mind you, this was a brand new facility, and cost $7500 a month.
Well after a water main broke and flooded moms room, she was moved. Her mattress was ruined but did nothing. No communication! Message on phone said the night shift were busy but it was 9:00 am! We proceeded to move her after one month.
She is in a nicer place and she is very happy. More expensive but better staffed!
She has Vascular Dementia and Alzheimer’s.
My advice is visit the facility. Check references and talk to residents or families.
it is a lot of work, but in the long run, you will be happy you made the right choice.
Bless you and stay strong.
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