Minna, or Suddenly Mad, has a lot to say about what’s going on inside her head after being told she has dementia. Her blogs are brilliant, insightful, direct. She seems to have stopped writing mid-2021 as COVID lockdowns have taken a toll on her wellbeing. Anyone who is caring for a person with dementia can learn so much from reading her writing, I suggest you take time to read a few.
Another blogger with early-onset dementia who shares his life as the disease changes his brain.
This poem was shared with me by the author’s husband, Bill, on Nov. 8, 2017, the day our caregiving group was given the opportunity to become independent. Shirley’s poem explains the purpose of our group, helping guide caregivers during and beyond the walk.
By Shirley Redlack Hill, October 17, 1989 (revised February 2010)
(Shirley’s mother died from complications of Alzheimer’s Disease in 1992; Shirley died from Alzheimer’s complications on December 21, 2016)
I visited Mom today, but she wasn’t home.
We smiled and hugged; I was alone.
In only body she was there for me,
Not the mom she used to be.
She tries to recall a friend or event,
But the demented mind is twisted and bent.
I long for peace in her tangled brain –
Something to ease her confusion and pain.
For a time now, I’ve patiently endured
Watching her once gentle thoughts obscured.
It’s hard having such a long good-bye,
Yet I know that God has a reason why.
Compassion I find so bitter sweet,
Still, I grow each time we meet.
I hug good bye,
Saying “Give me a kiss”,
Old times together always ended like this,
The road home is long and congested:
Tears come; they can’t be arrested.
But God’s love will make me whole.
Again His hand has touched my soul.
I know there are still trials to come,
And I pray for the nearness of His Son.
Long ago He showed me the way,
If only I follow Him day by day.
Thank You, Lord, for being near;
Please take away my mother’s fear.
Now, God, keep her safe in Your care;
Let me know You’re always there.
I release her to You. As You stand at the door.
I open my hand – fist clenched no more.
Your grace is sufficient for each new day;
“Alleluia, alleluia” is all I can say.
As our visits draw to a close,
This wasn’t a walk I gladly chose.
For those who must experience the same,
My heart’s with you; you’re not to blame.
Someday soon new cures will arrive,
Making our loved ones once more alive.
For now, seek support in your prayers or a friend,
Knowing God’s there until the end.
In 2005 my mother in law, who had dementia, Alzheimer’s, needed more care than we could give her ourselves. For more than three years her oldest daughter had been staying with her every night after work and on weekends. The youngest daughter stopped by mid morning to help tend the vegetable garden, do yard work, have lunch, fix her hair, before going back on her school bus route. My husband mowed the lawn, did repairs, fix tomato or ham sandwiches, have dinner, or just to talk to her endlessly. I humored her on the phone for hours, went by in the afternoons to keep her from “getting on the bus to go home” with her packed plastic grocery bags, listened to her stories as she rifled through the top dresser drawer or took her outside to mess in the yard.
There had been some indications that things were getting too difficult for us to continue leaving her on her own during the day in her own home. Our family needed help so we started looking for services. We needed someone to come to her home a few hours during the day to just be with her. But we didn’t have money to pay someone $10-$15/hour 8 hours a day five days a week. She had Social Security and a VA pension that amounted to less than $900/month. She owned her home, but the cost of electricity, fuel oil, groceries, insurance, property taxes, supplemental medical insurance, phone service, medications all took up the majority of those funds. She had lived frugally since her husband passed in 1969 and had been able to save up about $16,000 as well as pay off her home worth about $100,000. She owned a 1970s model car. My husband and I had been buying her medications for several years to make sure she didn’t stop taking any, and I’d been able to get her on Patient Assistance Programs for her Aricept and Namenda, saving several hundred dollars a month for many years. But neither she, nor any of our families had enough money to pay for in home sitters to be with her.
I started looking for community or government services to help. She didn’t qualify for anything. She either had too much money in savings accounts (a problem because we couldn’t get her to understand that she needed to use the money to pay for care, and having dementia she didn’t think anything was wrong – an issue I’ll talk about in another post); or she couldn’t have the services in-home, but could go to an adult daycare, which wasn’t right for her at the time; or she would have to be put on a waiting list that was over two years long, and once she did get to the top, the amount of help was minimal.
Shortly after Mawmaw had a blood clot in her leg that resulted in an amputation just below her knee. The doctor sent her to a skilled nursing facility for rehab, telling her and the family that she’d be able to go home after a few weeks. I knew that wouldn’t happen and that he didn’t understand dementia. The deal was that she couldn’t remember she didn’t have a leg, so unless you were there to remind her, or unless she looked down at her leg, she would start to stand up and, well, BAM!
So she was going to be in a SNF for the rest of her life. We were given names of a few places a few days before her release from the hospital. We went to start looking at the choices that would take her, and picked the best option. The biggest problem is that I knew her Medicare coverage would only last a short time and then I’d need to figure out how to get her qualified for Medicaid. I started the process.
We went to an elder care lawyer to ask for help. He wanted $8,000 to take all the information I’d gathered together, “which was well organized and everything they needed”, to fill out an application for Medicaid and take the application to Social Services for us. We’d have to take the rest of her money and prepay a funeral plan. Later when we’d sell her house there’d be another cost for his services. I told my husband that for less than $8,000 I could go to Social Services and fill out the paperwork. That’s what I did.
Meanwhile Mawmaw was in the SNF and we were struggling daily trying to get info and updates on her progress. A nurse would tell us one thing, a therapist another, the care planner something else. One Friday afternoon the director told one sister that she would “be discharged on Monday”. We were caught totally unprepared. She didn’t seem ready to leave, and we had no where to take her, but we knew she couldn’t go home to be by herself again. We split up that weekend and began looking for assisted living and Alzheimer units for her to move to, going from one place to another learning as we went that there were ways to ask questions.
First and always ask – “Do you take Medicaid assignment and do you have Medicaid beds?” If the answer is “No,” walk away. The big fancy places that look so good you want to move in, walk away. You can’t afford them (well, not if you were us). If they have a pet in the lobby to greet guests, walk away, it’s too fancy and expensive for you. If it smells, if people are smoking outside, if people are sitting lined up and down the hallways, if people come after you asking for help getting out, walk away. That leaves you with about three choices, and only one will have openings. Take it. Pray a lot and often.
We got to the care planning meeting on Monday ready to share where we were planning to move her when they started talking about Mawmaw’s progress in therapy and how they were ready to “discharge her from therapy and move her to maintenance therapy” where she would only get help if she started losing skills. My sister in law’s mouth dropped open and she asked if they were discharging her from their facility. The director chuckled and said, “Oh no, she won’t ever leave here, she’s not capable of living on her own.” My sister in law started crying. She never cries. Ever.
I was furious.
You know that scene in Fried Green Tomatoes where Kathy Bates is in her car waiting for a parking space at the Piggly Wiggly? A man pulls out and as she starts to pull in a sports car with two teenage girls zips into the space she was waiting for and they get out and walk toward the store. She tells them she was waiting on that space, and they reply, “Face it lady, we’re younger and faster.” She sits a second and then becomes enraged, and then she remembers Towanda, the wild and righteous woman she’s been told about by the woman at the nursing home she visits. Towanda, the righter of wrongs, the woman of justice. She puts her car in gear and as she says, “Towanda” she begins slamming her car into the girl’s sports car, pushing it out of the parking space. When they come out and ask what she’s doing she answers, “Face it girls, I’m older and I have more insurance.”
I was Towanda.
I told that director to look at my sister in law. I told her that she never, ever cried. I told her what we had done all weekend because of what she had said, and about the distress and upset she had caused us. I told her we were tired of trying to figure out the “code words” of the nursing home, the insurance stuff, the medical stuff, the qualifying stuff, all of it. I told her that they dealt with families every day like us and they knew that it caused problems for them, it was difficult, confusing, stressful, scary and that they could make it so much less so by making things clear and helpful in their language.
Ten years later. A lady in our dementia caregiver support group calls to say she can’t care for her dad anymore, it’s gotten too difficult, it’s not safe for him, for her, for her daughter. A good friend has called to get help for her parents, her mom has dementia and her dad can’t care for her well because he’s more frail. In both cases at the same time I’m trying to help them get assistance, make decisions, find resources from community agencies, at nursing facilities, from mental health agencies, from faith based groups and volunteer organizations. Nothing. There is no help available.
Now that’s not what the information on the internet will tell you. If you Google stuff in our community it seems there’s plenty of free help available from Senior Resources, Adult Center for Enrichment, the Alzheimer’s Association, the Shepherd’s Center, adult day care programs, respite programs, meal programs, nursing facilities, Medicaid….
Nope. They will take your name, put you on a list, nothing is free, tell you to call your neighbors, ask people in your church, use family members, sign up for workshops and groups and conferences and support groups, call other numbers, go to counselors.
The group friend who needed help with her dad made an urgent call about a situation on a Sunday night. We talked and I started trying to find help for her. We don’t have a mental health hospital any more in our state for people whose behavior can’t be controlled. Her dad’s behavior meant he needed to be out of her home urgently. I called the hospital mental health department and talked to a social worker there. She gave great advice and agreed that there were few options available. After lots of talking and visits to several agencies that week, the following Friday night this friend made a call to 911, told them she couldn’t control her dad’s behavior and that she was afraid of him and asked them to send the police. An ambulance took him to the hospital ER where he was seen by a doctor and nurses who all agreed that he could not go home with her and her daughter. But…her dad was in the ER for 48 hours while they tried to figure out what to do with him and find a place to send him. They couldn’t admit him, they couldn’t send him home, there was no mental facility to send him to, no nursing facility would take him until he’d been evaluated. Forty eight hours later he was transported by a sheriff’s car to a behavioral hospital in another county that agreed to take him until they could diagnose his problem and correct his meds and find a place for him to go. Once there the process of getting him stable, sent to a skilled facility, qualified and on Medicaid, forms and applications all filled out, and the daily issues of his care followed the pretty much the same pattern that ours had ten years before.
My friend whose mom and dad need care is finding the same thing as she goes about getting the diagnosis from a doctor that her mom has dementia. All care will have to be paid out of pocket until there’s no money left, then they will be qualified for Medicaid which in NC will not provide in home care, so they will have to be in nursing facilities. There’s basically one path to follow here, unless you have private money or a generous longterm care insurance policy.
The Alzheimer’s Plan For America along with the Affordable Care Act seem to have promised help for caregivers caring for loved ones who have dementia. But the goal of the APFA in the next 10 years is to be able to delay the onset of Alzheimer’s 5 years. They are spending billions of dollars on that wimpy goal. They are spending millions of dollars in the next 10 years to do studies on the kind of help caregivers of people with Alzheimer’s need, setting up offices to do those studies. At a meeting with representatives before finalizing this plan I told them that they could save millions by sending those same people to a couple caregiver support group meetings in each state and letting the people there tell them what they needed. Then they could use the money to begin giving the help to the families that was needed immediately.
Except for the amount of money being spent by the government, being used out of taxpayer funds, being taken from money raised by slick emotional fundraising campaigns, ten years later nothing has changed.
I’m Towanda. I’m older and someday things will change.