"Every dementia person is different."
Updated: Sep 16
A Beginner's Guide to Dementia
Okay, I begrudgingly admit that the above statement is actually true; dementia is tailor made to the person, and unlike most custom jobs, you don't have to pay extra for the service. (Gee. Thanks?)
Every dementia person is different because every life situation is different, families and support systems differ, the types of dementia are different, and the disease attacks each brain differently. HOWEVER, every time I've received this response to my cries for help it's come from a supposed dementia professional, wielded like a weapon against my quest for information to assist Mom.
Early on in our dementia journey I came to the the conclusion that people who don't have answers will not cop to their ignorance and help you find someone who does, instead they throw this little gem atcha', shrug their shoulders, fabricate an expression of empathy, and then shut the the door in your face.
So yeah, every dementia person is different, but there are still commonalities. Knowing them can help the dementia person and their care partner/caregiver think about what the future may hold, and how to plan for it.
This list of most likely dementia behaviors/situations comes from my experience as a family caregiver, and what I've picked up from other caregivers through online dementia communities and social media. I've placed them in the order that we experienced them in our household, or for those that we didn't go through, a guesstimate on when they occur from other caregivers. But as seasoned dementia caregivers know the time frame will vary from person to person, AND not all dementia folks will experience every one of these symptoms.
When Mom was first diagnosed she was already having issues sleeping and suffered from terrible nightmares. Four years later when my sister and I took on 24/7 care the nightmares had subsided. Sleep, however, was still elusive. Melatonin and sleepy-time teas were no help. This was our first foray into the world of geriatric psych doctors (medical professionals who specialize in mental health treatment for older adults). Dr. Susan hooked us up with Mirtazapine and it has worked wonders for us.
Sundowning is increased agitation that usually begins in the late afternoon and continues into the evening. I've yet to hear any caregiver mention that their dementia person skipped the sundowning experience - it is incredibly common. Mom experienced it as increased confusion, frustration, and/or sadness. Now in Stage 7 it seems to have peaked. I can't remember the last time I went "WTH? Oh, that's right, it's sundowning time."
Has any caregiver gotten through the early stages without silently screaming to the universe, "If I have to tell her <insert a myriad of repetitive questions here> one more time...!"? I doubt it. I will say that for me, this got easier. It was a few months of grin and barely bare it, but soon after it ceased to trouble me.
The Driving Fight
Mom gave up driving voluntarily after getting lost on her way back from church one Sunday, but that seems to be the exception not the rule. This is a common struggle for so many dementia families to get their person to hand over the keys. If you are just beginning your dementia journey this topic is a good discussion to have with your family members. Maybe self-driving cars will be the future answer to this sticky wicket, but until then getting guidance from your early stages dementia person about what might work best when the time comes to forever hide the keys could make a difference in this battle.
Hallucinations are false feelings. Delusions are false beliefs. Paranoia just plain sucks. For the most part we've managed to side-step these triplets of trouble, but they are typical behaviors. (Lewy body dementia is often cited as being most likely to experience hallucinations. Sorry, LBDs).
In my caregiver group, one gal's mom told all their relatives that her daughter was plotting to kidnap her. The other's grandma alleges that she's absconded with all the TVs in the house. Fending off accusations of stolen money is a frequent lament on the caregiver forums. So, a big "Phew!" for our household in dodging this particular bunch of bullets.
If you're unfamiliar with UTIs (Urinary Tract Infection) just tuck this little bit of info away in your brain for later: a UTI can cause sudden, unwelcome behavioral changes in a dementia person. While Mom has never had one to explain and medicate away a sudden crush of crazy, it is a common occurrence in dementia folks. It will be routinely suggested throughout this journey to get your dementia person checked for a UTI whenever things go south, and then souther.
Mom wrestled severe depression about four years into her diagnosis. We dubbed it Downer Town, and after a particular horrid 2-week bout of it hustled her butt to the geriatric psych doctor for the second time. As Dr. Susan put it, "Of course she's depressed. She has dementia." Doh! Yeah, I should have been able to figure that one out. A low-dose antidepressant gave our grumpy gal some much needed relief.
I think most of us balk at the idea that our dementia person will wander. It's a tough call to take away another's freedom though studies show that 6 out of 10 dementia people will wander. Even so, I refused to accept it until the afternoon I couldn't find Mom. She was not in the house, she was not in the yard, she was not on the block. I found her on a neighborhood corner a 1/4 mile away asking a stranger for help.
Limiting personal freedom is a hard hurdle for a caregiver to clear. When you do there are products to help keep your dementia person safe. Here's the ones we've utilized.
Transition: Care Partner to Caregiver
Another tough hurdle for me - it was around this point in time I realized Mom's input on issues was no longer in her best interest. She didn't want to encounter a locked door. She didn't want to go to the doctor, or the dentist, or the bathroom. It was a transition that crept up on me. One day I sadly understood I was no longer a partner in Mom's dementia journey, I was in the lead.
Transition: Caregiver Burnout to Respite
Regardless of how proactive a caregiver is on the self-care front, caregiver burnout happens. That doesn't mean you shouldn't try for self-care, just know that burnout will most likely knock you over the head at some point. Often it is a good thing; a turning point in the struggle of whether to access respite or not. Dementia Cafe's, dementia daycares, hiring in-home help, or just taking a relative up on an offer to hang with your dementia person for a few hours is something all caregivers will eventually need. It is so difficult to walk away from your dementia person the first few times (later in the game you RUN, skipping and singing a happy tune!), but the benefits to your caregiving abilities and sanity will be worth it.
As a newbie caregiver, having to wipe my mother's butt someday was one of my biggest fears. It seems to be a universal dread by the looks of social media. Is it fun? Nope. Is it the worst dementia's gonna fling at 'ya? Not by a long shot. Plus it also happened gradually for us so I got use to it a baby step at a time. It starts with a few accidents here and there but nothing incontinence panties can't handle. Your dementia person can often still toilet themselves, but it becomes less and less frequent. Eventually you end up with adult pull-ups, sheet protectors for bed and other furniture as needed, and assisting your dementia person through every aspect of toileting.
For us the process of having to help Mom with bathing was the same as the progressive decline to incontinence; first it was some assistance like turning on the water and helping rinse her hair, to gradually requiring full-service bathing assistance. Once she hit the Rage Stage, assistance turned into mortal combat for all aspects of personal hygiene. Thankfully, we have gotten better at getting her clean with less trauma for all!
The Rage Stage
So many tons of not fun. We hit the rage stage in January, 2019 and with bitter distaste christened it Monsterland. It only began slowly dissipating in January, 2020, but has never fully left us. We spent an entire year with everything being a struggle. If Momzilla could talk her battle cry would go a little something like this...
"Assistance be damned! This is WAR!"
And she indeed waged war - on bathing, on teeth brushing, on pill taking, on getting in the van, on getting out of the van, on taking off her shoes, on eating her favorite foods... it was a cussing, kicking, spitting, hitting kind of year. Not every dementia person or their caregivers will have to endure this, but if you're one of the unlucky ones do not hesitate to seek medication assistance (Dr. Susan to our rescue again!), and coping mechanisms from professionals. One such amazing dementia professional online is Teepa Snow.
Things do get easier.
On the forums and social media I utilize seasoned caregivers, who have gotten their dementia person over the hereafter finish line, say the later stages do get easier. Now that we are firmly in Stage 7, I can confirm that this is true for our dementia household too.
Mom's not as angry. Mom's not as anxious. We can often get through a shower with relative ease. The calm is more common than the storm!
While every dementia journey is different, that doesn't mean you can't ease on down the road with some concrete idea of where the path may lead you. Tuck this bit of knowledge into your dementia strategy guide and I hope the outcome of your family's journey is similar to ours; happy, heartbreaking, horrific, hilarious, human.