The workings of the Medicaid system became clearer to me after talking to an extremely helpful nurse, Alex, from VNSNY Choice. Here’s what I got from that conversation.
Medicaid is the government umbrella, a source of funding for long term health care services. Under the umbrella are plans, such as VNSNY Choice Managed Long-Term Care, who oversee the agencies supplying health care workers’ services. There are several agencies who are contracted to provide the nursing services. Freedom Care is the one we chose.
I’m still slightly bewildered by all the organizations involved in providing these health care services. However, there was some good news. Now that my husband qualified and is enrolled in the Medicaid long-term care system, any equipment related to his health condition will be paid for, such as a shower chair, walker, and even hearing aids (or at least one hearing aid. Alex wasn’t sure about that). The doctor must submit a prescription to the plan coordinator, and the item will be purchased, possibly even delivered.
My chosen caregiver has to have a physical and receives an orientation from the agency.
Recently, I’ve heard news stories about the low wages home health aides are paid. I’m wondering how much the caregivers are paid through the Medicaid program.
Again, if you have any useful information about Medicaid and long-term care, drop me a comment. Thanks
Resources:
For a guide to Managed Long-Term Care in the Hudson Valley, go to
A couple of weeks ago, I got this flyer in my mailbox.
Although I had put out feelers to find someone to keep my husband company while I took a much-needed break, I was intrigued by the possibility that Medicaid would cover the cost of a caregiver. I let the thought simmer for a while, and then I called Freedom Care.
After gathering information from a friendly person at VNS (Visiting Nurse Services?), we scheduled a phone evaluation to see if my husband qualified.
The next week, the nurse called and asked us questions for an hour or more. This kind of situation is difficult for me because my husband denies his condition. If asked about it, he’ll say, “Oh, I have a little memory loss.” I suppose denial is a happier state for him than admitting the reality of dementia.
When the nurse asked, “Mr. D., do you dress yourself?” He answered, “Yes, of course.” Then I had to amend his response because I lay out his clothes every morning. If I didn’t, he’d be wearing the same underwear and clothes every day. He also can’t make judgements about the right clothes for the weather. Sometimes he forgets where things are in the house.
“Do you make your meals?”
“Sure,” he said, “I do sometimes.”
“I do the cooking,” I interjected. “He washes the dishes.”
All the facts of our living arrangements were laid out in front of him. He doesn’t drive. I’m in charge of finances. He can’t control the TV. It breaks my heart to drown him in the reality of his losses.
After the interview, the nurse called back to say that P. qualified for the long term care assistance program. At this point, the workings of this system got really murky for me. I think I spoke to three different organizations or maybe it was two people from the same agency. This is what I learned, although I suspect it’s not complete:
First I was directed to call Maximus (somehow related to NY MedicaidChoice) to find out which plans were available in our area. This contact person told me that it’s the CBPAP (I don’t recall the actual name) program that pays family members for caregiving. There were two types of plans:
MLTC—Managed Long Term Care provides home care, and allows participants to keep their doctors
Medicaid Advantage Plus covers all Medicare and all other services. It provides a care manager and includes doctors, possibly not the same ones the participants have been using. It offers hospital care and doctor visits.
The Maximus person gave me the names of six agencies that offer these plans, four for MLTC, and two for Medicaid Advantage Plus. I thought it would be a good idea to research these different agencies but…she said that the 20th of the month is the cut-off date for an evaluation for May. With that pressure, I essentially closed my eyes and picked—VNSNY Choice Managed Long Term Care.
We now wait for another evaluation by another nurse to determine the number of hours we’ll be offered.
I’m still a bit bewildered by all these agencies involved, but if this pays for a few hours’ respite for me, I’m for it.
If you have any more information on this process, drop me a comment. Thanks.
It’s strange to watch someone with dementia regress. These days, Joy is still caught between what used to be and what is. What is: Phil can no longer follow a plot in a film or episode. During The Crown, he repeatedly asks, “Who is that?” Joy: That’s the Queen.
Some evenings, she reads to him from her favorite children’s book. Each chapter is a separate episode, and he seems to follow the plot, if he doesn’t fall asleep. When the grandchildren were visiting, Phil watched cartoons with them and was as engaged as they were, laughing and making comments. Seeing the three of them with their eyes glued to the screen was disconcerting.
Like a toddler, Phil needs help choosing appropriate clothing for the weather. Unlike a toddler, he doesn’t learn the routine, and has to have it repeated each morning. He needs reminders for hygiene. Joy’s daughter quizzes her girls, “Did you brush your teeth?” Joy hears herself say the same thing to Phil and can’t quite believe this is her life. “You need to cut your nails—trim your beard—did you put on deodorant?”
Joy can’t imagine what it’s like inside Phil’s brain. He rarely expresses anything about his struggles. Sometimes, after a memory lapse, he’ll say, “You’re not going to put me in the nut house, are you?” Joy answers, “Not yet.” Which is, sadly, true. He depends on her for direction, for support, for assurance. He has separation anxiety, just like a preschooler. Since COVID began, they haven’t been apart for more than a couple of hours at most.
Phil lives in the present. When they take the same route into the nearby town, Phil remarks on the same parking lot full of cars, the same empty storefront, the same leafless apple trees. Joy is almost envious of his lack of past and future. She wonders what it would be like to be only aware of the present moment. Isn’t that what practitioners of eastern religions try to attain?
When is it time to turn over the caretaking? Joy wonders. What if he becomes belligerent? A wanderer? Incontinent? How long would she–could she–keep him at home?
When you’re dealing with a person who forgets stuff, the challenges spawn adaptations. The problem with caring people with dementia is that, unlike a toddler, they don’t maintain the learning. What you show them one day is usually gone the next. So here are some fixes that myself and other caregivers have come up with regarding clothes.
> I complained to the caregivers in my support group that I couldn’t get my husband, P., to change out of his long underwear and into his pajamas so that the long underwear could go into the hamper. One of them suggested I buy more sets of long underwear, which I did. I’ve even labeled them so I can match up the gray tops and bottoms easily. Next time I’m buying different colored sets.
> P. likes to sleep in his long underwear. Left to his own devices in the morning, my husband will shower and then put on the same long underwear and the clothes that he wore the day before (see above). We’re working on getting him to go directly to the bathroom and put his long john “pajamas” and underwear and socks directly into the hamper. So far, it works–sometimes. He often asks, “But what will I wear today?”
> Routines are really important for folks with memory loss. P.’s now getting pretty good at remembering to change from muddy, outdoor boots into clean house sneakers.
> P. has little discrimination regarding outdoor temperatures. He tends to be cold a lot of the time. But he needs help choosing a jacket. I try to limit the choices on the coat rack to two at most.
> He sometimes mixes up his layers, putting the down vest under his flannel shirt. I just make light of it and help him switch them around.
> A couple of years ago, I bought him a fancy velour jogging suit. The pants were easy pull-on, and the jacket was warm. It was a pretty spiffy outfit. I thought it would make dressing easier. He hates it. The only times he’s worn the jogging suit is when he’s had an endoscopy.
> P. helps me fold and put away the laundry. But he doesn’t always remember where things go. I haven’t yet resorted to labeling his dresser drawers, but that means that I have to reorganize when he puts his clothes away.
> Another caregiver said that she packs away all the off-season clothing. I took her idea and put all the summer clothes away, leaving a limited amount of items in the closet.
When I reread this, I feel a little apologetic for focusing on such apparent minutia, but then–these are the thoughts and activities that make up a large portion of my days.
Caregiving is not easy. One day may not be too difficult, but the cumulative effect is harder to cope with. P. always wants to help with chores, but sometimes it’s easier to do them myself than direct him through the task. Yes, I probably should be more patient. Yes, I should slow down and allow him the dignity of assisting with our daily chores. Each day I make choices anew, and that’s how I go forward, day by day.
For this memoir, I’ll take the third person. It’s informative for me to view the events from an observer’s distance. I’ll be Joy, and my husband will be Phil.
Back in the early 2000s, Joy and Phil were busy professionals. Joy worked full-time teaching English as a New Language (ENL). She wrote columns for the union newsletter and other publications. Phil had two offices for his hypnosis clients, one at home and one in Monroe. When he wasn’t helping people quit smoking or lose weight or eliminate phobias, he was spreading his brochures around Orange and Ulster Counties. He often had appointments at night, which suited Joy just fine, as she liked to have the house to herself after work.
If Joy had been less busy and more alert, she might have wondered about the books Phil kept buying: Improve Your Memory books. Train Your Brain books. And the supplements on the counter: Brain boosters. Joy knew that Phil’s mother had died of Alzheimer’s disease, in a slow decline until reaching the age of ninety. Phil never expressed any fears about his own health, but the books spoke for him. Joy wasn’t attending.
Joy retired in 2011. Phil took time off for them to travel and visit family in Italy. When they got back, Phil started having trouble with his schedule. He missed a few appointments. Joy found out that Phil had been seeing a neurologist who called Phil’s issue, “memory loss.” A year and a few tests later it was an official diagnosis: mild vascular dementia.
The neurologist ordered a driving test. Phil was incensed. “There’s nothing wrong with my driving!” But there was. He made left turns in front of oncoming cars. He drove too fast and too close. Phil failed the driving test. “It’s that woman’s fault,” he complained, blaming the examiner.
Joy took over the driving. Fortunately, in spite of his indignation, Phil didn’t try to take the car keys and leave. He didn’t argue about who was to drive. So perhaps Phil felt insecure about his own abilities.
When they visited family in Spain for some weeks, Joy did all the packing. Phil could no longer organize himself to complete tasks like choosing what clothes to take or ordering additional medications from the pharmacy. They argued about Phil carrying his own passport and plane tickets. Joy was afraid he’d misplace them, as he often misplaced his wallet and phone. They settled it with a pouch around Phil’s neck. It was up to Joy to make sure he put it on every morning.
Phil stopped working after that trip to Spain. He could no longer do the jobs needed to maintain the four-bedroom house, and Joy was tired of the additional responsibility. They moved to a two-bedroom apartment. Phil was unhappy that his tool collection was downsized and sent to a storage unit. There was no need for a lawn mower or a weed-whacker. He stopped initiating new activities or new conversation and spent most of his time rereading magazines or doing crossword puzzles.
Each month and week, Joy noted more losses. He couldn’t remember where the utensils and dishes were in the kitchen, so she labeled the drawers and cabinets. He didn’t know which clothes were appropriate for the weather. Joy chose his outfit each morning. Phil couldn’t remember which pills he’d taken or whether he’d taken any at all. Joy took over medications and supplements, putting them out in a cup at breakfast.
Phil asked sad questions, like “What’s your daughter’s name?” and “Was I married to her?” (Maddie, his first wife). If requested to get something from another room, Phil would forget what it was he had to bring.
Joy was in despair. For her, each day was Groundhog Day. Everything was on repeat: the directions needed for daily routines, the comments he made about the food, the weather, the houseplants. “Thank you for making breakfast,” said three times.
Joy boomeranged from frustration to anger to guilt to sorrow in an endless loop. If she yelled at him, she felt awful. He was, in spite of everything, a sweet-tempered, loving man. Phil lived in the present, and while each experience was fresh for him, Joy felt buried in dullness.
And then came the Corona Virus. And it all got worse. Cut off from social interaction, Phil lost more of his cognition. Joy entertained herself with jigsaw puzzles and sewing projects and Zoom meetings. But times were hard.
Tangled Mind 