My mother was admitted to the memory care unit of an excellent assisted living facility today. They never have openings, but there just happened to be one and my step-daughter (on staff) grabbed it for me until we could talk about it. I don’t see anything but good about it, except the fact that I was leaving her there. They have such good reviews; everybody sings their praises, and they go by Teepa Snow’s doctrines. We are there on trial, so not tied down to anything drastic, but I just want my momma to get better. I haven’t slept in so long because she called out to me several times every night to do something for her. I know things are going to be better, but it is so so hard.
Hugs to you, @mykidsgranny .
Thank you. She had a good night, and a good day today. I took her some things today; she seemed happy to see me, but wasn’t upset at the thought of me leaving. I hope that’s a good thing. I keep starting to get up and go down the hall to see about her.
I send healing thoughts and prayers to everybody else who is going through this.
Just got the decline from Long Term Care insurance for my dad’s claim. Does anyone have any tips on appealing? He doesn’t need any help with ADLs relly. The claim is based on cognitive impairment. He is T1 diabetic and has a severe brain injury that means he cannot calculate insulin doses and he has real trouble with time. So we had to move him to a personal care place because he really can’t be unsupervised for more than an hour or two, in case his sugar drops etc. He will not remember to eat in that case.
The facility really didn’t do a good job of describing his situation because the decline stated that “medication management is not a basis for claim.” Which i understand if all they are doing is reminding him to take his blood pressure pills etc.
They gave him the same cognitive test that Trump took and he scored okay but that is a dementia test and he can do things like name a pencil and spell words backward. I have a full neuropsych work up that shows impaired functioning on many levels, but they seem to give the MMSE exam more weight.
I will be writing an appeal and I think I have a strong case, but any tips are welcome.
Sorry for this aggravation, @surfcity. Hope that those with relevant expertise will chime in. There is usually a lot at stake with LTC pay-outs; may be worthwhile to confer with elder law attorney or an elder advocate. Guidance on required diagnostic language and strength of sources could be invaluable.
What level of care is the personal care place providing (AL or SNF)? Does that impact any of this? The description of unsafe alone past two hours and needs no help with ADLs presents quite a contrast. Just the kind of situation that allows insurers to deny initially. May be helpful to gather expertise that translates your refined neuro-psych testing into implications for necessary assistance.
All the best.
@surfcity. Lots depends on your LTC policy wording. Every one seems to be different!
Go through the policy and look for how they are activated. Use THOSE SAME WORDS in the appeal.
My Mom’s claim was denied when she moved into Assisted Living because at first, she was on the “independent” side, even though I had to pay extra to have them give her her meds. When she moved to the Assisted Living side I tried again, but this time I matched the policy words to describe the ADL that she needed assistance for. Plus I had the place RN, write back up materials. Her policy then paid out 60% of benefits ($60 a day) for the rest of her life and it was a godsend. I couldn’t have kept her at the nice place without the $1800 a month. I tried to get the full benefit when she moved to Memory Care because it cost so much more, but their license did not meet the skilled nursing criteria set by the policy for the 100% pay out.
So my advice is:
a) call your agent and ask what kind of letter will work to activate the policy, ask if they have any tips.
b) ask the staff who sends the monthly reports to other LTC places what worked to get them paid. You can also ask the social support staff there or whatever they are called at your Dad’s place to put in the words required.
c) the level of care does mean a lot. Go through the level of care or your Dad’s care policy and match anything in that with the LTC policy and highlight that. Also translate anything even close to a policy provision.
Mom was level 3 when they started paying. They never did pay more than 60%, even when we engaged hospice for the last year, because Mom’s policy was 100% care for Skilled Nursing and only Skilled Nursing…hospice wasn’t skilled nursing??
I agree that LTC policies are contracts and the medical documentation needs to match the terms of the policy. Get your dad’s providers to help you. They need to help advocate. I’m sure you are not the 1st person whom they will be helping with this issue.
Thanks all. The ALF cannot believe this is not being paid, although they do say most companies drag their feet and try not to pay.
The language in the contract states “You require substantial supervision to protect you from threats to health and safety due to severe cognitive impairment.”
Their definition of severe cognitive impairment is “a loss or deterioration in your intellectual capacity tithed comparable to (and includes) Altzeheimers disease, organic brain disorders, and similar forms of irreversible dementia and measured buy clinical evidence and standardized tests that reliably measure impairment in your short term or long term memory, orientation as to people, places, or time, and deductive or abstract reasoning.”
I think Dad’s case is not run of the mill, due to the combo of diabetes and TBI. He gets one hour of care a day. The ALF at one point said they’d have to start charging me for additional hours so they could dress and bathe him. I had to explain that the claim did not rely on ADL help.
The insurance company also keeps mentioning that my mom helps cue him to get dressed, which is not really true as he will do that on his own. But regardless, I am pursing the claim based on Severe Cognitive impairment, not ADL help.
The tip to use their own language is very helpful!
@surfcity - https://www.aginglifecare.org/ – see if you can find a local-to-your-dad geriatric social worker. You can hire a specialist who will help with this. Entirely worth it.
When do you stop crying? My tiny, lost, hurting mother is so thrilled to see me every time I go to see her. She never complains except from the pain of her broken arm; she eats well, she plays the games they ask her to play (although I am sure she would rather be in her room reading a book). There are some people there who have truly lost every marble and babble so loudly all the time; Mom is such a quiet little person. They are so good to her there, they love her and treat her like a princess and I know it is so much better for her. But I feel like I am failing her somehow by not having her here with me, when there is no way I could take care of her here. I don’t know that in-home care would take as wonderful care of her as these people do. She very blatantly preferred my brother, and I resented that for years. Now I feel so guilty for even that. She has been there less than a week, so surely I’ll adjust eventually.
Hugs to you, @mykidsgranny. None of this is easy.
My mom, by comparison, is a whole heck of a lot of whining and griping and complaining about how badly she’s treated (when I know my brother has basically dropped everything else in his life except work to be there for her).
My hugs to your brother. My mother went through a mean, dissatisfied period here at home, but not that badly. I guess none of us can win.
I haven’t posted in a few months and wow, have things changed. I’m lost.
My mom is 80 and has been dealing with diabetes for 40 years. Her blood sugars periodically bottom out in the evening, she has diabetic retinopathy and is legally blind, she’s in stage 4 renal failure, has blood pressure issues that have recently gotten worse, and just spent a few days in the hospital because her pulse bottomed out and she blacked out. They inserted a loop reader and gave her a monitor (which she can’t see and my dad can’t understand.)
Dad is 82 and physically fragile but with relatively few medical issues. He was diagnosed with dementia a couple of years ago, and it’s been progressing rapidly. They’ve been able to support each other enough to live independently, although we did move their bedroom to the first floor in November.
I know he yells at her and gets angry at her, which I understand is typical behavior for a person with dementia with their caregiver. Despite all of her physical ailments, she’s kept their life organized and serves that role for him in regards to his dementia. She has thought a couple of times that he intended to strike her, but wasn’t ever sure.
Today she called me and told me that she stopped him from driving to a nearby town to look for someone who hadn’t returned his call – when he didn’t even know the guy’s address or where to begin looking – and Dad became very angry and definitely tried to hit her. She says he deteriorated noticeably while she was in the hospital and I was staying with him, and that something “needs to be done with him.” She fears they will have to be separated, and she knows she’ll have to live elsewhere too, as she can’t function in the house alone.
I live 2 1/2 hours away and work full-time. I’m their only living child, and we have no close relatives in my hometown. Dad has always insisted that he’ll never leave the town where they live, and he does still have situational awareness.
How do we proceed? Do we need to have him evaluated to determine where his dementia stands? How can we force that to happen when he doesn’t want it? Ditto for moving him to a care center – would one of us have to get POA? Mom would want to, but given her precarious health I don’t think that makes sense. I don’t even know how that is done; our older generations have always lived with relatives until their death.
There’s only one facility local to them that has a memory care unit, and I hear it’s always full. Dad is a veteran but the VA facility closest to him is about 3 1/2 - 4 hours away from us. Is it true, though, that Mom could also stay at the VA facility as the spouse of a veteran? If so, we might try for a closer VA facility, although that would pull them away from everyone they know (and dad does still recognize people he’s known, even when I don’t!) We could try for a facility local to us, but from what I’ve heard they are all expensive here in this upscale community. We might be able to move Mom in with us, but none of us, including my H and adult daughter, are happy about that.
If it makes any difference, we co-own the home they’re currently living in, so I’m assuming it can’t be counted entirely as their asset.
I know I’m rambling. I feel like I landed in Oz today and I can’t make phone calls until Monday, so any knowledge you can pass along before then might help me get some sleep.
My kids granny… you should be celebrating that she is getting great care…but you can’t because this is the start of the end of her life. We all get there . It is hard and sad and ok to feel that way. My mom was so happy to see me every time I saw her, too, but she would forget that it was not a week ago that I was there. You have time to enjoy your mom and the visit so DOthat. And just work through the grief as you are able.
@NerdMom88 many many hugs… don’t know what to suggest other than move sooner rather than later. It is terrible to do all this in a crisis mode , yet we can’t seem to pull the trigger until it is a crisis. Get help and get it now. . I was able to get guardianship of my Mom even though she could fake being completely in charge and normal…but not for long enough. And she didn’t fight it, surprisingly. We told her it was just while she needed it, that when then medicine got her better she wouldn’t have to worry. I had all the POAs too.
Don’t let your mo get hurt. We call it parenting you parent for very good reasons, they become children needing protection from themselves and from others. I am sorry things are tough .
@mykidsgranny my cousin who works in elder care gave me great advice: “Don’t allow yourself to second guess yourself for a full 3 months.” It allowed me to put all those alternative situations you keep playing in your head aside. Your experience is like mine in that I realized, for dementia, it takes a community and not just a caregiver in the home.
@NerdMom88 my mother is 83 and my dad 81 and neither particularly physically frail but presently dad with moderate to severe dementia and my mom moderate dementia. I had to step in and move my parents abruptly due to violence from my father when he hit a part-time aide with a chair. Fortunately, at the time, I knew the “next phase” was coming and had already scoped out my options where I could keep them together. These options were full-time home care (not a viable option for multiple reasons), memory care for them both (at their CCRC), or a recently discovered at the time a family care home (sometimes called personal care, family care, or board and care) with a total of 6 residents with 2 care-givers around the clock.
I found the family care home by googling and it’s a mile from my house. It is less expensive than a nursing home but more expensive than standard assisted living (without extra services). My dad had a couple of violent episodes there, but it is dealt with by primarily behavioral interventions and careful consideration of medications after discussion with the director, staff, and primary care provider. It really does take a community. I suspect, but I don’t know, that a memory care with less staff would have trouble dealing with dad’s behaviors while trying to individualize care for my mom. At in-home care, when dad hit the aide with a chair, rather than working with me for a reasonable solution, they insisted I bring my dad to the ER and declared they were “scared” to have anyone “in there.” Of course, my dad wasn’t kept as he is really nice and sweet most of the time. So different at the family care home and it’s an ideal solution for a couple with different care needs. I would not consider memory care for your mom as she would be dealing with a community of everyone not oriented to person, place, or time.
From what I remember, you anticipated the move to downstairs would be a temporary solution and although I had scoped out options, I was surprised by the crisis and my head was spinning on how to urgently manage the situation. My dad is career military and I have not yet checked out the VA memory care options, but I anticipate a long wait-list. I also met with a couple of social workers. One at the CCRC and another at a local medical center experienced with dementia care. In addition, I met with a professional senior care adviser (look at your local senior care non-profit for advice on who they would recommend). I suspect your mom can be convinced not to be the health care POA as she seems of good sound mind.
@NerdMom88 I feel for you! I am the only child dealing with my aging folks too. Many people told me this and it is true, even though it is difficult: You have to move your parents closer to YOU, because YOU are going to be the one dealing with everything and they are only going to get more frail.
Fortunately for me, my parents intellectually knew that it was better for me and they didn’t want to be more of a burden. But I still feel awful about moving them away from their home, church, and friends. However, in the past 6 months they have each made 3 trips to the ER and I have driven them to a dozen medical appointments. I live 2 minutes away so it is a much easier thing to do than when they were an hour+.
I wish I knew of some resources for you - others here may offer specifics. But think hard about keeping them far away from you as things will only progress and you will be making that trip more and more often.
I agree that you need to move them closer to you, especially as an only child. My mother for years claimed i ruined her life, but not having done so would’ve ruined mine and left her in a more precarious situation. The complaints eventually subsided and she actually enjoyed the AL I moved her to.
What GTalum said! Family care home was the best option for my in laws and the best price.
And also, yes, if they are not capable, then they may have to move to you. My in laws did not and they were entrenched in a social group which did provide visitors daily, but we were the ones getting calls.
I just wanted to say that my mother is fast becoming all the staff’s favorite patient; she is cheerful, cooperative and communicative. Which is mostly to say that she still has more of her marbles than a lot of them. She still asks to come home every time she sees us because “the family won’t know where I am” but she accepts that we can’t take care of her with her broken arm. So, she is still adjusting better than I am, but I am slowly climbing out of the pit of guilt. I got a strong talking-to from my dentist today; we’ve known him forever and he is such a good friend. Thank you all for being here.
I just got a phone call from mom asking me how to turn off her shower. Mind you, I live 400 miles away from her. She moved recently into a new apartment and right after she moved, my middle sister took her on a 12 day vacation. So the learning curve of her new place was disrupted. At the request of my youngest sister, mom’s new apartment is just 7 minutes from her house, but it is just an apartment in a building, not a senior living complex. My sister has 2 teenagers and doesn’t deal well with being overwhelmed and I think having mom closer to her is even more overwhelming than it was when she was 20 minutes away. Then she felt she could turf issues to other people, now she feels like she has to deal with everything immediately.
So, I get this call, try to help mom over the phone but get nowhere and have to call my sister. And now, due to some other circumstances in her life, my sister is verging on the brink of falling off the deep end. I wish mom would have agreed to moving into the CCRC, but the financial impact was not feasible. Ugh, I feel helpless with respect to both of them.