RESTACK: Five Uncomfortable Truths an Alzheimer's Dementia Caregiver Wants You to Know
Indu Manohar shares the whole story
Because we are so obsessed with independence and youth, because we are so afraid to acknowledge disability and illness, because dependence terrifies us, because old age gives us the ick, because we misclassified caregiving as an uninteresting burden, because we have so little infrastructure supporting caregivers that many of us would prefer to avoid the subject until it slaps us in the face, because of all of this, we hear very few caregiving stories.
As such, many of us go into caregiving with very little idea about what to expect.
Roughly one in nine adults over the age of 65 have Alzheimer’s, and yet general literacy of the disease remains low. Every day thousands of Americans are learning that their loved ones have a disease that they don’t really understand at all. They attempt to care for this person with the best intentions, but their expectations are a total mismatch for the reality Alzheimer’s presents.
I am one of these people.
This is why I am so glad to be able to share with you writing from Indu Manohar, who I just discovered on Substack. In her newsletter The Caregiving Diaries, she does a phenomenal job of unpacking what it is like to care for someone with Alzheimer’s in a very friend-to-friend kind of way.
You may think: well I don’t know anyone dealing with this disease, so why should I bother to read this? I get it.
But the reality is, you probably do know someone. And if you don’t, you will soon.
And that person might very well be you.
From Indu Manohar:
Alzheimer’s dementia is a neurodegenerative terminal disease.
That means you don’t die of some vague ‘old age’ while dipping in and out of cute memory loss like in the film The Notebook1, with all your other faculties intact. You die of Alzheimer’s— which is a slow, cruel, demeaning flaying of your selfhood and your body.
You can get paranoid, physically aggressive, and anxious, rather than just sweetly confused. It affects your judgement, your personality, language, communication, long before you forget your loved ones. You lose your tastebuds, object recognition, mobility, the ability to sequence day to day tasks, and even to cough, swallow, or breathe. When you die by dementia, you die because your brain loses the ability to regulate vital bodily functions.
Do not tell a caregiver that “it’s going to be ok” or that “it’s old age” or “it’s life” — medication and lifestyle changes can slow down cognitive decline and mitigate the worst of the violence and suffering, but it’s not ok. It’s a death sentence, one that can be as merciful as 5 to 8 years or, in the case of younger-onset disease, as prolonged as 25 years.
Alzheimer’s disease is not a natural way to die; it is a terminal disease that does not yet have a cure.
Alzheimer’s strikes families, not just individuals.
Alzheimer’s and other dementias are uniquely difficult to support because most patients have anosognosia, which means they do not know they are sick, and they cannot accept that there’s something wrong with them.
While in your care, they will refuse to accept that they need any help. That’s not denial or a coping mechanism (as frustrating as this is to caregivers whose help is continuously rejected with “i’m fine!”), but a physiological condition caused by damage to the brain’s self-awareness centers.2 This might mean you’ll have to caregive while maintaining the illusion that they are independent. They will wander off one day, get lost and stressed, and forget that happened the very next day, and insist they know the way. Doctors visits and blood draws and scans can be a physical fight that requires calming drugs, at worst, or a draining affair of manipulation and a million repeated questions, at best.
Of course, other terminal diagnoses like kidney failure or metastatic cancer affect the family with emotional, physical, and financial challenges. However, unlike other diseases where the patient can give consent to be cared for by professional caregivers and nurses, most dementia patients (until the very end stages of the disease) are only comfortable around their loved ones and can get agitated around strangers who they cannot remember and have no continuity of emotion with. This might mean that families are required to do the bulk of caregiving with minimal help, while simultaneously being rejected at every turn by a patient who does not understand they are sick.
In a cruel irony, Alzheimer’s is such a burden on families that caregivers are at a higher risk for developing dementia themselves due to stress, high cortisol levels, social isolation, depression, and poor sleep quality.3
All’s fair in love, war, and Alzheimer’s caregiving.
When we’re in the caregiving trenches, we will do anything to be allowed to keep our loved one safe, calm, and to just get through the day, including telling lies and employing manipulation.
We do struggle with this in the beginning —especially if we’re caring for a parent or a partner— trying to reason, explain, ask for permission, rationalise, in order to get them to do something for their own good. But the truth is that soon you’ll start saying what needs to be said, even if they’re lies, in order to help them. For example, “Yes, it was your idea to shower today.” or “Yes, I already ate, you can eat now.” or “No, the tv can’t come on because there is no power.”
The following by another Alzheimer’s caregiver really helped me through my guilt:
Lie, deceive, be dishonest. Do whatever it takes to get through the moment peacefully and with minimal impact to your bank account. Peace is the goal. Not honesty or respect for your loved ones’s intelligence. The disease won’t allow them to use logic and reasoning. Their inability to do that is a condition of their sickness. That’s why truth and respect for their dignity are not always possible.
There is no reasoning, no rationalizing, and no amount of soothing talk that can pacify an Alzheimer’s patient who is set on a specific outcome. Only that specific outcome — or an illusion of that outcome — can relieve the situation. All’s fair in love, war, and Alzheimer’s caregiving.
— from Alzheimer’s Almanac: All’s fair in love, war, and Alzheimer’s caregiving by M.L Ivy
Nobody cares about the person who has Alzheimer’s like we do.
Read that again. We might whinge and complain and be depressed all the time, but that comes from a place of mortal compassion and grieving love, especially when we’re caring for a parent or a partner.
We care through anger, frustration, despair, wanting to run away, wishing things were different, but still going on anyway because that’s what you do for the people you love, no matter if you do not recognise the person they have become.
Do not judge a caregiver when they’re yelling at the patient, or wishing they were dead (that does happen in moments of frustration), and imagine that you know better about how to care for them. Every Alzheimer’s patient is different and we are each pioneers into the brain of our loved one— nothing you study or read about comes close to the lived knowledge we have.
We are thinking about them 24/7. We pick up on non-verbal cues before you know it’s even there. We are attuned to their physical needs like thirst and hunger and tiredness, we know what a single grunt or grimace means. There is an intimacy about being a trusted person in the life of someone who does not remember who you are, just that you’re a face that makes them feel safe. For many of us that is earned after years or decades of building trust. And being there for them as they lose their faculties, and begin to depend on us more and more, despite their sometimes violent urges to be independent.
Most nursing homes are not capable of caring for someone with Alzheimer’s at the level that we do, having studied our loved ones for years— which is the reason why many caregivers choose to care for the patient at home, until the very last stages of the disease.
We are grieving for them even before they’re gone.
Our loved ones with Alzheimer’s are here physically, but parts of them have died— they look like the people we love, but aren’t. They’ve lost shared memories, and have no idea who we are.
There’s a reason why dementia is termed “the long goodbye.”
With other terminal illnesses, the person is still there, struggling, but you can spend time with them, say goodbye before they’re gone. With Alzheimer’s, we’re saying goodbye to parts of them every day, until there’s nothing left except their bodies.
We have already lost everything that makes our loved one themselves, including their personalities, their identities, their speech and witticisms, their hopes and dreams, their talents and capabilities, their likes and pet-peeves, their core childhood stories and our shared experiences, their memories of us and of themselves, long before their body dies.
This post is part of a series of educational posts about Alzheimer’s from my own research and experiences with caregiving. As someone said about something else, if you’ve met one Alzheimer’s caregiver, you’ve met one Alzheimer’s caregiver, so use this as a jumping off point to do your own research!
And as always drop a comment if you have any questions or want more information about something I’ve talked about here; I’m happy to point you in the right direction. And if you’re a fellow elder caregiver in the trenches, come say hi!
There is so much in here that I connect with, and it comes from past caregiving for my grandmother when she had Alzheimer’s AND present caregiving for my autistic children.