My elderly mother, dx with mild-moderate dementia & other health problems, adamantly refuses both home care & AL. How do I navigate this?
My elderly mother is currently in a rehab center, subsequent to a hospitalization for cardiac problems. She's insisting on returning home to life as usual, which is not reasonable bc of med mgmt & ongoing cardiac issues. I agree with docs that this would not be a safe discharge plan, as she was also diagnosed with mild-mod dementia in August. Anosognosia now makes it impossible for her to talk about or understand implications for her & family. Fortunately, good AL is affordable. For a bunch of solid reasons, home care, while also affordable, is not an option. I have Durable POA & HCP. Unfortunately (very) rehab center told her that only I can arrange for discharge, which placed me in a incredibly difficult position. I should be a bridge, not an adversary. PS -- mom and i have been very close my whole life & still are, but for when this topic arises, whereupon she threatens to walk out, "find a judge who will listen”. Doubt it to be true, but unsure of unpredictable & poor judgement behaviors that may stem from dementia. She's scared & anxious. Yes, I am too (beyond) -- bc i have to make life-impacting decisions. It's too intense.
We are in a huge agonozing medical bureaucracy bind -- when in rehab, we can't access mom's geriatrician bc "the rules" say that while she's there, their doc acts as PCP. (Their doc is very poor - little attention & doesn't communicate at all. Just. Plain. Bad. ) Also medicare says double billing. Trying to coordinate geriatrician, cardiologist, psychologist, social worker, etc to help with transition is like facilitating a United Nations conference -- each says, "I have to stay in my lane", "you'll have to call x for that". It's maddening & we're suffering bc of it. The geriatric care mgr I've hired is not really doing much. We're also trying to get appt with top-notch neurologist, which is months away.
AL has been identified, atty has reviewed contract, & I'm in discussions with AL, so the process has begun. She's got to leave rehab - it's depressing, without any social interaction, and is impacting her (& my) mental health. Given mom's potential behavioral response to AL, potential AL community added a non-negotiable about private 24 hr aide for 1st 30 days to help with adjustment. (They provide aides, but not 1:1.) This would be more restrictive than rehab center & odds are high this would hasten need for Memory Care -- she's always been so private & would not accept it.(They said that if she became unmanageable & couldn't be otherwise redirected, that's what would happen immediately. She's a gentle soul, but dementia isn't. Visualizing this scene is indescribably distressing.) Have appt with another AL to visit...just as backup.
Other important stuff:
Tried & continuing to use "compassionate deceit" and "therapeutic fibbing" ( aka lying), but she's still sharp enough to know otherwise. Not working.
My dad (mom's husband of 62 yrs) suddenly passed in June 2022, which impacted both cardiac & cognitive problems. He had been compensating for her, not letting on how much cognitive problems were increasing. He took care of everything for our whole lives & now, all of a sudden, we're very lost. Now, unfortunately, all is out in the open, and we're in a perfect storm.
I'm so burned out already. Friends/family scarce. Im in therapy, but it's only the tip of the iceberg & not enough. Have been resourcing Alz Assoc -- will continue, but it's super overwhelming. Oh ...and i also live out of state. Haven't been home since june.
Difficult family situation has increased conflict around mom's care, so family support us scarce & not reliable.
Questions:
How do i transition mom out of rehab in the least distressing way? (I know it will be very hard regardless.)
Is the AL's added non-negotiable aide for transition reasonable? standard? (Also, it comes with unexpected considerable out of pocket expense above base AL cost.
More ?s, but not enough room. :-(
Is rehab getting ready to discharge your mom yet? Have you had any further thoughts about possibly moving mom closer to you?
In terms of the family situation, are the family members close by and are they going to visit/support mom once you leave to go home?
Yes the Rehab doctor is in charge of Moms care while in rehab. But she still has her regular doctors. I don't think she can be kept from seeing them, especially if specialist. You know Rehab is not a "have to" Mom cannot be made to stay there. I would get things set up with the AL or MC. Once set up, you tell the Rehab that Mom needs to be discharged to the AL. Tell them once she is settled in you will call her PCP and have him order her PT at the AL.
I think to get Mom out of the Rehab, I would allow the 24/7 aide. But I would stipulate that this aide will do everything for Mom. That you will not be charged any care fees for that month. That the aide will make sure Mom gets to the dining room for meals. That she gets her to the common area for socialization and activities. She gets her out of her room.
In my experience Moms monthly charge was half room and board and half her care needs. They were broke down on her bill. So, 2k for room and board and 2k for her care needs. You should not be expected to pay for her care needs when she has a private aide.
Just skip the AL, and your life will be much easier. Their doctor will be the primary physician and will coordinate with cardiologist on meds if need be. She won't likely be going to these specialists any longer.
Just trying to work down the list - to focus on, clarify or cross off:
- Neuro evaluation for capacity for lifestyle decisions. Has this been done? Is this a Yes, No or Maybe?
A Yes or Maybe could involve a possible trial discharge home (before AL option is forced).
A No would mean enduring POA makes decision to discharge to elsewhere (eg AL or MC).
Then the question becomes do you have conversations aimed at 'convincing' Mom, fib it will be 'for now' or not discuss at all.
I would try to mentally flowchart the process, crossing off all non-viable options so I could see the path clearer. Once the destination goal is set. Once the OP is accepting of that being the best path forward, then work out the smaller details of how to get there.
"He had been compensating for her, not letting on how much cognitive problems were increasing".
This happens, probably a lot. Only natural Mom will be adrift.. ☹️. I'd aim to steer her somewhere safe. Tell her it's 'for now', until her heart recovers a bit more. Until you can all see the way better.
I'm sure there was more. Fortunately, there were 3 of us (my brother, his sainted wife the MBA and me. Brother lived 15 minutes from the last facility we placed mom in (we finally got smart). I was 90 minutes away and spent at least an hour or two a week on the phone from work with facility/doctors. I visited once a week. Sil popped in after work almost every night; brother dropped by at unpredictable times which kept facility on its toes.
The work intensified during the times mom was hospitalized.
Having an elderly parent whose life is legally and medically in your hands is a huge undertaking. We were fortunate that we trusted one another, that mom had funds and that we were all financially secure ourselves, although my earning capacity diminished because I could no longer work a couple of lucrative side gigs.
Good luck.
Your family pulled together & did well 😊.
What is your worry?
My feeling with loved ones who are "stubborn" and think they can handle these things on their own is to step aside and let them try that. Either they succeed, they fail and we are assigned as guardian or they become wards of the state.
You are so fortunate that mom has the funds to afford AL/MC and long distance medical transport.
Don't wait for the next hospitalization.
Mom was living in regular AL and they would not accept her back after a hospital stint in 2019 where her dementia had worsened. The nurse from the AL came to evaluate her in rehab and said nope, she now needs Memory Care. So I had medical transport come get her and her wheelchair from Rehab and take her to the Memory Care bldg where I'd set up her new room prior, and she segued right in. Was she happy and thrilled? No she was not. But it was what she needed at the time. Memory Care has a higher caregiver to resident ratio, so there was no need for me to hire an aide for her specifically; there were only 23 residents in all at the MC, and about 8 caregivers. There was a base cost of $6500 which was all inclusive except for incontinence supplies, medications, and doctor visit costs. If your mom is asked to go into Memory Care, I would NOT be agreeable to hiring an aide; if they agree to take her in AL with an aide, I'm not sure that's a reasonable deal, personally.
If mom is combative and fighting you tooth and nail every step of the way, you may have to get her PCP involved to write a prescription for a mild calming medication for her. My mother did very well with .25 mgs of Ativan.
If you need to go back home and have nobody in state to advocate for mom in managed care, you can hire a geriatric care manager to step in for you. There is A LOT involved for the POA when a parent is in AL/MC, so it may be a good idea to look into this option.
https://arosacare.com/hiring-a-geriatric-care-manager/
Here is a link to 50 useful tips on transitioning a loved one into Memory Care AL:
https://www.seniorlink.com/blog/50-tips-on-transitioning-a-loved-one-to-memory-dementia-or-alzheimers-careyour-blog-post-title-here
Wishing you the best of luck with all you have on your plate; it's a lot, I know. Take it one day at a time, one step at a time, which is the best you CAN do.
The AL/MC places don't explicitly paint that picture. ( For good reason, I gather.) This scares and worries the #/(&!$@ out of me. I'm already feeling so defeated. Pls tell me more about "A LOT".
First, make sure that your DPoA is legally active. Read the doc to see what is required to activate your authority (sometimes it requires 2 medical diagnosis of "incapacity"). This way, no matter what your "sharp" Mother says or does, you are legally her benevolent agent making decisions in her best interests, whether she agrees with it or not. You can choose to entertain the family's "input" but in the end you do what is do-able. The caregiving relationship has to work for both parties (you and your Mom). Anything that is a burden or creates ongoing stress for the caregiver/manager means the solution is not viable.
If she was transitioned directly into AL, would she be a flight/wander risk? If so, she may then require MC, where she won't be able to leave the facility.
Please think about why you want her to see a "top notch neurologist". There is no cure for dementia/ALZ. All you will do is exhaust the both of you fighting over getting her to go, and then fighting over any therapy recommended. What outcome are you hoping for at such an appointment? For the doc to "convince" your Mom of her problem? It won't happen. Maybe consider meds for mood/anxiety, if you think she'd comply with taking them. Dementia tends to ramp up people's anxiety because they no longer can bring themselves back to a calm state due to their loss of reason and logic. Also, they lose the ability to empathize with others, hence her fighting you tooth and nail.
There is going to be distress during the transition process. It will get bad before it gets better. If you keep this in mind, you can power through it to a "least bad" option. That's all we get with cognitive and age-related decline: least bad options.
Wishing you much wisdom and peace in your heart as you navigate this situation.