10 Things I Wish I Knew When My Mom Was Diagnosed With Dementia
Image: Robina Weermeijer on Unsplash
Six years ago, I sat in a doctor’s office with my mother as he delivered the devastating news. She had a rare early-onset dementia called primary progressive aphasia (PPA). She seemed fine. She was traveling the world, consulting with mental health organizations, collecting art, performing with her band, doing all the things she had always done. She was just having some trouble with reading, and occasional word-finding difficulties.
A month ago today she died of the same diagnosis.
I spend a lot of time thinking about how we got from there to here. I watched my mom slowly slip away, wondering where each part of her went. In the early years, I spent most of my time researching cures and treatments. I never bothered to educate myself about what her inevitable decline would look like. I couldn’t face it. As a result, we all faced her last years with significant uncertainty. I’ve spent the last year or two wishing I had learned more in those early years, back when I could have planned better and done more. I’m shocked by how little support and education our healthcare system offers to families grappling with dementia. I can’t go back in time, but I can help other families facing this unbearable reality. Here are 10 things I wish I knew when my mom was diagnosed with dementia.
Media depictions of dementia are inaccurate
Dementia has become an easy plot point in so many shows. The elderly grandparent is confused, but when everyone understands the diagnosis, things somehow improve. The reality is much more complex. Dementia is much more than just memory loss. In fact, with some types of dementia, memory loss doesn’t appear until much later. Presenting dementia as mere memory problems does a serious disservice to families grappling with this illness because it means that no one knows how awful dementia really is until they become a caregiver. Blind optimism and willful ignorance do not make for better outcomes. No matter what type of dementia your loved one has, if they live long enough you can expect these symptoms:
incontinence
the inability to perform all basic tasks, including dressing, bathing, and eating
mental health issues such as anxiety and depression, and in many cases, hallucinations and aggression
difficulty walking; most people with dementia eventually become bed-bound
Teepa Snow offers exceptional advice on managing the symptoms of dementia. I was reluctant to check her out because I didn’t think there was anything that could help. I regret not watching her videos earlier. A person with dementia’s brain functions fundamentally differently. Understanding their brain can help you work more effectively with them.
Dementia is a terminal illness
When my mom died, people kept asking me what the cause of death was. It quickly became clear that most people don’t understand that dementia kills.
Doctors talk around this a lot, so let me be clear: dementia is a terminal illness. If something else doesn’t kill your loved one first, dementia will. The brain is the body’s operating system. Dementia is brain failure. As the brain shuts down, so too does the body. Many people with dementia die of pneumonia or infections as the immune system becomes less effective. Even with exceptional medical care, however, your loved one will ultimately die of multi-organ failure. Knowing this can help you make better decisions. What would you do differently if your loved one was diagnosed with a terminal illness? Do those things now.
There is no treatment for dementia
Nothing can cure dementia. Nothing can restore a person with dementia’s cognition or memory. The decline is inevitable.
Most people diagnosed with dementia quickly get a prescription for a cholinesterase inhibitor like Namenda. The research on these drugs shows that about half of people show very modest improvements on the drug—so modest that most loved ones would not notice. They may temporarily slow the decline, but they will not reverse it, nor help your loved one regain the skills they have already lost. And if you’re hoping these drugs will help with memory, the reality is pretty grim: just 14% of people who take these drugs show improvements in cognition. Even then, the improvements are short-lived.
This doesn’t mean things are hopeless, or that you shouldn’t try medication. It does mean you need to be realistic about what you can expect. If the drugs are too expensive, cause unpleasant side effects, or your loved one doesn’t want to take them, there is no reason to force the issue.
What about natural remedies, like exercise or diet changes? A huge body of research shows that these interventions can reduce the risk of developing dementia. Whether or not they slow the progression of dementia is less clear. They may help improve quality of life, since remaining physical active and socially engaged can help prevent other health problems and help a person feel connected to loved ones. But here again, there is no reason to force these interventions if they make a person miserable. No matter how healthy your loved one’s lifestyle is, dementia will eventually erode that health.
There’s an entire industry of natural health and wellness providers who promise to cure dementia. I know, because many of them took advantage of my mother. They made lots of money from her false hope, but they never made any progress. This has been the experience of thousands of families. There is absolutely zero scientific evidence supporting any alternative remedy for dementia.
One of the most popular, the Bredesen protocol, is little more than a money-making scam that may destroy quality of life. Practitioners claim that special diets, supplements, and other interventions will slow or even reverse dementia. This is false. Instead, these interventions require people with dementia to make huge sacrifices—to go to the doctor way more than necessary; to undergo medically unnecessary testing; to give up foods they love; to spend much of their time on activities they hate. Some families believe that trying these natural remedies is harmless. That’s true if the loved one finds joy in the interventions. But any intervention that costs lots of money or that forces your loved one to do something they don’t like is harmful. Time is the only thing your loved one has. Let them spend it eating the food they like and doing the things they enjoy.
Quality of life is the only thing that matters
Given that there is no treatment for dementia and dementia is a terminal illness, it makes sense to focus on quality of life. Yet in every dementia support group I’m in, I see the same questions over and over. “I’m worried eating so many sweets is going to cause type 2 diabetes!” “I had to hide the cookies from my mom because she was gaining weight!” “I have to force my mom to take her supplements every day, and it’s always miserable for both of us.” “My dad needs a colonoscopy, but he’s refusing. How can I make him do it?”
We’ve all been conditioned to focus on long-term health. When you have a terminal illness, there is no longer any benefit to doing so. All that matters is getting as much pleasure and connection out of the present moment. This will mean something different for every family. In general, best practice is to:
For the love of all that is good and holy, do not correct your loved one. This isn’t just unhelpful. It is abject cruelty. Your loved one cannot understand the current world. You cannot make them understand. Don’t continually remind them that their sister is dead, or that you’re not their mother. Step into their reality instead. Play along. You’ll both be a lot happier, and you’ll have much more meaningful interactions. Check out this article on therapeutic fibbing, which helps you better step into the world of a person with dementia.
Avoid doing anything that upsets your loved one unless it is absolutely necessary for their immediate health. Don’t fight over medication every day. Don’t force them to do something they hate.
Let your loved one eat the food they like—even if it’s not ideal.
Give your loved one as much control over their life as possible.
Focus on meaningful connection. Spend time together doing enjoyable activities, not endlessly managing your loved one’s health and life.
Don’t waste time, money, and pain on needless medical tests. When your loved one already has a terminal illness, there is no benefit to testing them for another one. If they don’t want the colonoscopy, the mammogram, the biopsy, don’t make them get it.
Consider treating dementia as development in reverse. Your loved one is losing knowledge and brain capacity, similar to how a baby gains it. In some ways, they are becoming a baby in an adult’s body. Offer them the sort of compassion you would offer a baby, and consider viewing their behavior through this lens.
No test can conclusively diagnose dementia
The messaging about dementia is really misleading. Every dementia organization urges people to “get tested.” The reality is that dementia is a diagnosis of exclusion. There is no single test that can diagnose dementia. And even if you have symptoms and lab results that are consistent with dementia, the culprit could still be something else. This means families have to deal with two competing realities:
Doctors often dismiss anyone with memory loss as having dementia, even when there might be another explanation.
While it’s important to rule out other diagnoses, there is no benefit to ongoing testing to determine which type of dementia a person has, since no form of dementia is treatable.
Every family must focus on ruling out other potential causes. Don’t get sucked down the rabbit hole of trying to distinguish this type of dementia from that type, endless lumbar punctures, and other anxiety-inducing tests. Dementia is dementia, and while they all start differently, the end is the same. You’ll have to decide what level of testing is right for your family. Just know that what your doctor recommends is not always what’s best for your loved one.
Early diagnosis does not improve outcomes—but may ruin quality of life
Dementia is not like cancer, or heart disease, or most other serious/terminal illnesses. An early cancer diagnosis can save or significantly prolong your life. Early diagnosis of diabetes or heart disease might mean totally reversing these conditions. With dementia, there is no such benefit. There is nothing you can do to treat the illness or slow its course. So an early diagnosis has one effect, and one effect only: it confirms that your loved one is going to lose their memories, their minds, their thoughts, and virtually everything that makes them who they are. There’s no benefit to knowing that early.
Dementia screening for people without symptoms or those with a family history of dementia is medical abuse. It causes endless suffering. Your loved one may have several years left of good cognition and decent memory. Do you really want them to spend that time anxious about the future, wondering how much longer they’ll remember their loved ones? The only reason to see a doctor is if you have symptoms of dementia and need to rule out other potential causes.
Your loved one needs to get their affairs in order—even if they have very little money
For the past few weeks, I have spent about half of my work week calling banks, filling out paperwork, and talking to lawyers. My mom was not a wealthy woman. She had a small retirement account and a house. And by the time I pay all the fees associated with figuring out what to do with these assets, there may be nothing left. So far, my mom’s death has cost me about $10,000 out of pocket.
This is all because she didn’t have a will, and didn’t set up her assets in such a way that they could be easily distributed. Filling out a simple form with her brokerage firm would have meant that the money in that account went straight to my brother and me—no endless phone calls necessary.
It’s not her fault. She and I thought what most people do: since she’s not rich, there’s not a lot to divide. And since it’s just my brother and me, it will be an easy 50-50 split. We were wrong. No matter how little money your loved one has, talking to a lawyer now could mean the difference between:
money going straight to your family when you die or having to go through the costly 6 to 12 month probate process.
having money set aside for burial or having your kids have to front that money.
your kids directly inheriting your house or a court telling them what to do with it.
having to shell out thousands of dollars for a lawyer or having everything easily resolved.
Don’t just talk legalities, either. Fully informed about the realities of dementia, it’s important to have ongoing conversations with your loved one about what they want. Some questions to ask include:
Would you rather die at home, or in a hospital?
If you are severely ill, unable to speak, and unaware of what is going on, do you want your life prolonged? Or should we let you go peacefully if you get an infection?
Do you want us to focus on preventing pain? Or do you want aggressive treatment no matter what?
Where and how do you want to be buried?
Is there anyone you need to make peace or amends with now?
Your doctor probably won’t help
Doctors specialize in treating disease. When there is no effective treatment for your disease, there’s not much they can do. When my mom was first diagnosed, I assumed we would be seeing her medical team regularly, that they would make nutritional recommendations, help us find in-home care, track her progress, estimate how much time she had left. They didn’t do any of this, because that’s not their role. A doctor’s job is to treat infections when they appear, prescribe medication, and that’s about it.
This of course leaves a huge care gap. Most families have never dealt with this before. They don’t know what services are available, how to afford such services, or even what decisions they need to make. This is why I recommend that everyone hire a geriatric care coordinator. These care coordinators help you know what to expect. They can resolve family conflicts, and refer you to great providers in your area. They are surprisingly affordable, more effective than therapy, and more responsive than any doctor.
If you’re in Atlanta, I highly recommend Aging Life Care. Michelle was a lifesaver. If you’re anywhere else, find a geriatric care manager here.
It is impossible for a single caregiver to do it all
Like most children of parents with dementia, when my mom was first diagnosed, my immediate impulse was that I should move her in with me. This is the dream for a lot of families. It’s also impractical. I didn’t move my mom in with me, and I spent years feeling guilty about it. What I didn’t realize is that living with my mom would have been terrible for both of us. She wanted to stay in her home as long as possible. And when it reached the point where she could no longer live safely alone, she had far more needs than a single care provider could offer. Her partner, John, provided most of the care—but he is semi-retired and doesn’t have kids, which is much different from most dementia caregivers. Even for lovely John, though, my mom’s needs eventually became overwhelming. The truth is that most people with dementia eventually need 24/7 support, and no single caregiver can do it all. The nurses, CNAs, and friends we hired to help made a huge difference in my mom’s life, providing her with a level of care neither John nor I could ever manage on our own.
Stop feeling guilty. Get a care plan together now, and know that moving in with your parent will likely wreck your life and prevent them from getting the supportive, expert care they need.
Hospice changes everything
When your loved one becomes bed-bound, develops serious mobility issues, or has trouble swallowing, it’s time to call hospice. A lot of families are resistant to doing this, but remember: dementia is a terminal illness. Hospice changes everything. They wrap around you with every possible service you could need. Need a hospital bed? Hospice makes it happen. Need help bathing your loved one? You’ll never have to do it again. Hospice is incredible, and the earlier you can involve them, the better. Here are some things you might not know about hospice:
Medicare pays for hospice. For most families, it is totally free.
Hospice offers comprehensive family support, including grief support, a chaplain, and tons of education.
Your hospice providers can help you plan for how to support your loved one as they die.
Hospice can help you after the death, too.
Don’t wait too long. If you think your loved one might have 6 months or less left to live, call hospice today.