So why am I posting this? Because there’s a chance that someone, somewhere, will read it and find it helpful.
My mother has Alzheimer’s.
We’re not talking forgetting things every once in awhile. We passed that point years ago, long before we realized there was anything wrong. She lives with us, in an in-law apt in the basement, and we are at the point where she has an aide 5 days a week. Thankfully, she took out a long-term care policy when my dad did, though his proved to be useless. Hers is a Godsend. She also rarely gets agitated, and only wanders from stores, never from home - yet. It’s important that these facts be known before going on because every case is different, and so is everyone’s journey.
Here’s what I’ve learned on our journey so far:
Being a caregiver doesn’t give you legal rights, even if you are a family member with power of attorneyYou know when you see on the news that someone who never should have been behind the wheel has an accident, and everyone shakes their head and wonders where the person’s family was that they let it get to that point? I understand that now. It could mean the family was trying, but their hands were legally tied. It took over a year of constant phone calls to have mom’s license taken away. I don’t know if it’s the same in every state, but Mass was all about her right to keep it. It took a filing by her Dr. for the RMV to even consider giving her a test when her renewal came up, and that was a hard win. By that point mom declined, knowing darn well she wouldn’t pass. Meanwhile, it was an entire year of not knowing if this time behind the wheel would be the time she killed herself - or worse, someone else.
Despite what you hear about early detection being imperative, Alz’s is a process of elimination diseaseIt took over two years to get an official diagnosis. At that point, the Dr.’s throw meds and vitamins at it and if something sticks, you’re ahead of the game. In mom’s case, nothing stuck. I ran myself ragged those first two years of diagnosis, and for a solid year after that trying to figure out how to fix it - to the point of nearly losing my own sanity. I don’t regret or resent that because that’s what I needed to do to come to terms with the fact that there really isn’t a damned thing I can do to stop or even slow her progression. Everyone who gets this disease runs on their own timetable, and every caregiver goes through a stretch when they try to lug the anvil back up the hill. It doesn’t work, but the peace of acceptance only comes after getting crushed by the damned thing.
Alzheimer’s falls under the Dementia umbrella because it’s not limited to memoryThe ability to process information is skewed. When something is said to you, your ears process the info and send it to the brain, which processes it and sends it out for response. For someone with Alzheimer’s, it’s like the game of telephone. Eventually, all reason is lost. If you tell mom not to touch something because it’s hot, chances are high she’ll reach out and touch it because that’s what she heard. Memory loss comes into play five minutes later, when she’d do it again because in her world, it never happened. Or if she does remember and gets upset at being told again, we wait another five minutes and chances are, neither event will have occurred. Every once in awhile something will stick and become an obsession for an undeterminable amount of time. We’ve collected tissue boxes, sunglasses, and our current obsession is coffee mugs.
Even those with advanced Alzheimer’s can fake normalcyMy mom was a very intelligent woman. She was an English teacher, and even at this late stage of the disease, she can hold a conversation as long as you don’t so much as scratch below surface level. In some ways, that’s made it even harder to be heard when trying to get outsiders to understand there’s a problem. This happens with doctors and nurses, and yes, family & friends. They don’t understand that this same woman who fronted her way through a conversation at a holiday party that night, earlier in the day thought she’d messed up while helping gift wrap Pilsner glasses by turning the box upside down because the picture showed there was already beer in them.
Routines are for the caregiver, not the person with Alzheimer’sAnything set up out of necessity will be new. New things fall under short-term memory, which has a timespan of up to 5 min. I can set up all the routines I want, mom won’t remember them, therefore she can’t follow them. The routines need to be so that I can tell what has happened, or hasn’t happened. It’s also okay to let some things go. I need to pick and choose the battles for my own sanity, and mom needs to feel like she does some things on her own for as long as she’s able. These decisions are based on safety, hers and ours. The stove and garbage disposal in her apt. are disabled, and it won’t be long before the microwave (purposely) bites the dust.
It’s not ok to get angry at someone for doing something they can’t help doing, but it happensIt’s ok to need a break. All problems cannot get solved by waiting 5 min, and even those things get frustrating when it’s fifty times a day, every day. It’s ok to walk away. In fact, it’s downright necessary. Even with an aide 5 days a week, a supportive husband, 2 teenage boys at home, & The Sherry who willingly sits through countless retelling of mom’s stories so I can cook holiday meals, I lose it. Then mom forgets it happened in 5 min, and I feel like fresh dog shit that can’t be scraped off a shoe for a good 3 days.
An outside support system is imperativeIt helps to talk about it with people who have been there, or are there now, even if the very reason you need to go is the reason you can’t go consistently. I belong to a Caregiver group through the senior center that meets once a month. I’m the youngest one there, but the problems are all the same. I also have friends and family who have been through it with their parents. I can call on them, day or night, and they understand whether I feel like laughing, crying, or just bouncing things off of them. Legal advice from a writing friend who recently lost her own mother to the disease has proven invaluable. The paperwork involved could fill a shed.
The reason I can’t front is because today, my husband and I visited a Medicare approved nursing home. It was everything I expected, and it was completely devastating. Even though I am grateful these places exist, and I know it’s inevitable she’ll end up either there or somewhere similar, seeing it firsthand has renewed my strength to keep her at home for as long as we can. Certainly while she’s still living in the moment.
With that, I’ll end on the most important thing I’ve learned:
Treasure the momentsIt’s so easy to get into the mode of thinking it doesn’t matter because nothing will be remembered. Lord knows, I’m guilty of it. But if I don’t treasure them now, what will I have when those moments are gone? They’re dwindling fast. It doesn’t have to be much; a moment of my undivided attention, really listening when she says something for the millionth time, watching a movie or TV show together. Or it can be even more simple than that. Mom loves both Snickers bars and ice cream. I tried portion control before I realized, “What the hell am I doing?” If she enjoys it, let her have it. If she forgets and enjoys another one an hour later, more power to her.
I’m sorry if I’ve bummed you all out. I know many people who battle worse things in their lives, including worse Alzheimer's situations, but it’s still painful. If reading this helps someone in any way, even just to not feel alone, it was worth writing it.