What I wish people knew…

The other day someone asked me, “As a caregiver, what do you wish people knew about dementia?” This is my answer.

1. Alzheimer’s and Dementia are not interchangeable. Alzheimer’s is just one among MANY forms of dementia, but gets the most attention, because it is the most common. A lot of GP doctors are not skilled at diagnosing and recognizing them and need better training. It took YEARS for us to get a diagnosis and then it was wrong. After that, it took months to be referred to a neurologist. If a diagnosis does not feel right to you, research, ask questions, keep pushing. Especially if you have a loved one who suffers from one of these diseases, your job is to advocate for them, which isn’t necessarily always going to please all doctors, agencies or insurance companies, but that is okay. While we always strive to hold space for good interactions, ultimately pleasing the machine not your job. Your job is to garner the best care for your loved one.

2. Alzheimer’s, FTD, Vascular Dementia, etc. are brain diseases, just like cancer or MS or kidney disease are diseases. They just don’t share the same stigma. People who have dementia are not “crazy,” “feeble,” “mean,” or “difficult.” They have an ILLNESS that unfortunately sometimes affects impulse control, judgment and social boundaries, but are still adults who deserve to be treated with dignity and respect, so please don’t treat them or talk about them like they are not there. Also while I’m on the subject, caring for an adult with dementia is not like caring for a toddler. A toddler has the whole world in front of her and is learning and evolving and growing in beautiful ways with each passing day. What is happening to our loved ones is quite the reverse, is fraught with grief as pieces of them drift away and it ends in death. See. Nothing alike.

3. A diagnosis of dementia (or any of the diseases under the umbrella) does not mean life is over. Dementia patients, especially in the early and mid stages, enjoy social interaction, make friends, are creative, like doing things, and have individual talents and preferences. They’re kind of like people that way.

4. Every case is different. Just because your Uncle Joe had Alzheimer’s does not mean that my Aunt Frieda’s will manifest itself in exactly the same ways and vice versa.

5. Our system of care in the U.S. for people with these (and other chronic illnesses, for that matter) SUCKS. It is inconsistent depending upon where you live and complicated and hard to navigate when you are healthy. Add cognitive impairment and it becomes almost impossible.

6. Caregivers and patients spend over $200 billion a year out of pocket for care needs. That number is expected to rise to $1.1 trillion by 2050. We give up jobs, retirement funds, resources, social interaction, and a good chunk of our lives in service to caring for our loved ones. Like many caregivers, I can’t imagine not doing what I am doing no matter how much it costs in not just financial but personal reserves. That said, it is a huge sacrifice and there is a reason why there is a high rate of severe illness, early death and even suicide among caregivers. We need real systems of support and they simply do not exist. And before you refer me to Alzheimers.org, they are a lobbying and fundraising organization. While that is necessary as well, it does next to nothing for families living the day to day realities of these diseases..

7. Never give up hope. While there is no cure for any of these diseases (they are sadly all terminal), there ARE therapies and approaches that help make things easier. I’ve seen alternative therapies make a huge difference and work magic in cases where people seemed to be declining (not always – see #4 “Everyone is different,” but enough of the time that it’s worth mentioning).

8. Unless asked, don’t share your horror stories about how awful it was when Grandma Edna was wasting away before she died. My mom’s initial misdiagnosis was literally delivered with the following sentence: “She has Alzheimer’s Disease. Eventually, she will forget how to eat and need feeding tubes and starve to death. Here, help her fill out this advanced directive and come back in six months.” I can tell you that it was the most colossally unhelpful bit of wisdom that has ever been delivered to me in my 40+ years on this earth. Horror stories occupy a similar space that is also home to jokes about
“doddering” and “babbling.” There is a lot of grief tied into walking the path of dementia and in walking that path with someone and a bit of sensitivity never goes awry.

9. This disease is filled with so much sadness in addition to moments of fragile beauty. There will be times when you have to fight with every cell in your body to not react in kind when your loved one is sundowning and says something horrible. There will also be moments, like when they sadly tell you “I know I love you, but I don’t know who you are,” when you think your heart will break in two and the truth is that it will break – over and over again.

10. While most of us who care for others fervently hope for a cure and are always on the lookout for solutions to alleviate symptoms, please keep your aggressive sales of shakes, high cost supplements and other miracle cures that just happen to make you money to yourself. While there is much to be gained from alternative therapies, it is unethical and predatory to sell false hope. Even if it has been shown to help with symptoms, do not promise your expensive product will “cure” a complex, incurable, terminal disease.

11. These are not just diseases of the old. Early onset forms are becoming more common. If you are a woman, you have a ONE IN SIX chance of developing dementia during your lifetime (ONE IN ELEVEN for men) and nearly 50% of adults over 85 have some form of it. We have to keep fighting until a cure is found.

12. If you know someone who is dealing with dementia or any other chronic, severe or terminal disease either as a holder of them or a care partner, don’t wait for them to reach out, check in on them. Chances are they are overwhelmed and too busy to reach out to you or just don’t want to bother people.

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