Thursday, January 10, 2013

My Life with Alzheimer's

I know a DD post is usually in jest, slightly irreverent, and always directionally challenged, but every once in a while it’s difficult to even front the mood. Fair warning: this is one of those times.

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 attorney
You 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 disease
It 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 memory
The 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 normalcy
My 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’s
Anything 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 happens
It’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 imperative
It 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 moments
It’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.


Cindy Spencer Pape said...

Beautifully said, DD. Hugs. Any time you need to vent, I'm here.

Mai said...

Treasure the moments is the strongest thing you can do. Wonderful beautiful words DD. *big hugs*

Dalton Diaz said...

Thanks. We just want to keep her here as long as we can.

Anna Bowling said...

Hugs, DD. Been there. Very very true words in this post.

Maggie Nash said...

You are an amazing woman DD, and what a wonderful daughter you are. As a nurse, I see hundreds of families in a similar situation, and many are more than happy to hand over their problem parent to a nursing home the minute the diagnosis is made. Your mother is so very lucky to have you, and even though at times is must seem that she doesn't realise, I am sure in her heart, she does. *Hugs*

Dalton Diaz said...

The one blessing of this disease is that she has no idea she's as far gone as she is.

This was a hard post, and these comments help. I hope the post helps those who have been there, who are there now, or God love them, don't know it's coming.

MiaMarlowe said...

I know what you mean about your mom being able to carry on a good conversation. When I met her at that book signing in Sharon, I'd forgotten she suffered from Alzheimer's when I was talking with her. My maternal grandmother suffered from this disease and was also able to do that.

God bless you for your compassion and the love you're lavishing on your mom. She may not know it now, but I believe she'll know it hereafter.

Glynis said...

I hate this disease. I lost my dad's voice on the phone, the only link I had to a confused man I loved, through this disease. He became so violent he was taken away and sectioned into mental health care. Seeing him taken by police, medics and a psych team is my last memory of visiting him in our family home. You have my admiration.

I lost him in October, thanks to Alzhiemer's. I lost my dog at the same time, and love thinking of dad and Jakeyboy clambering around in good health again. My thoughts are with you, and I know what you are going through. Store the memories, and stay strong. My maternal grandmother and father means my genes are 50/50 split, which is why I keep writing! A frightening experience for so many of us. The good thing is, dad and I had a sing song the week before he passed, he remembered me, and our song. Deep inside your mum is still there, so keep on hugging and talking to her. Virtual hug from a stranger who understands. x

Kim in Hawaii said...

Aloha. Today is the second anniversary of my father's death from complications of Alzhiemer's. He died in a "specialty" home that failed to care for him. My mother was devastated and I was across the ocean in Hawaii. You offer great advice for those going through this. I concur with the holding onto the memories ... that's what my children have of their sweet grandfather.

Dalton Diaz said...

Mia, I'm so glad you understand that, tho sorry it's because you saw it with your own family member. A small place like Merry's is perfect everyone to be comfortable. 1st thing I did was tell Merry and ask her to distract mom if she tried to leave without me. She looked at me like I'd grown 2 heads until mom tried it - twice! Wanders from stores, not from home - thank God - but there's nothing quite like getting distracted, then looking up to see that (purposely) multi-colored hat bobbing in and out of cars in a parking lot!

Dalton Diaz said...

Glynis and Kim,
You both are the very reason I felt compelled to write this blog. I'm so sorry for your loss, and I know you understand the need to keep mom with us for as long as possible. The ability to do so may end tomorrow, but we'll take that as it comes. It would be worse to be too far away or to have circumstances dictate putting her in a home while she's still in the moment. My heart goes out to both of you.

Donna said...

I've watched you handle this horrible battle with courage and compassion. Your mom is such a wonderful lady, I know how much it hurts me to see how far she has declined each time I see her, so I know how much it hurts you. As you know, I went through it with my father in law and he was similar in ways to your mother. He got stuck on the obsessions and everything was repeated in 5 min segments. The hardest part was he forgot who everyone was early on and wandered from his home a lot. It takes a special person to do what you do, but then again, we've always know you were special. Hugs to both you and your mom and of course to all the special men in your house

Naima Simone said...

Hi, Dalton!
I'm late but I could give you a huge hug right now. I lost my grandmother to Alzheimer's last year. My mother, sister and I ended up having to place her in a nursing home as well after keeping her at home as long as possible. While reading your post so many memories flooded back about those seven years she lived with this awful disease. We experienced so many of the same things or near enough just a different appliance. I understand the pain and confusion of having to watch someone who was always capable, independent and sharp slowly become someone who's just as confused and vulnerable. With my grandmother, it was cooking. Boy, that woman could cook!! And when she suddenly didn't know how to make was that one simple thing that started the crack in my heart that would become a wide fissure.

There were times I was angry, in despair, but like you pointed out, I learned to treasure the moments we had. She adored butter pecan ice cream and we would bring it home to her, and later sneak it into the nursing home! She was a joy. And no one will ever replace the hole her passing has left in my heart. So please, post about your mother and this disease all you want. There are plenty of us reading who can offer you support and understanding to get you through another day!

Dalton Diaz said...


High praise indeed from someone who has a helluva lot more strength than I'll ever own. Thank you, and Luv Ya'!

Dalton Diaz said...


*Hugs* right back. I'm so sorry you've been thru this, too. With my mom, it was editing. You could ask her the most obscure English question, and she would have the answer. She was my not-so-secret weapon! It still destroys me every time I have a question and she's standing right there, yet that part of her is long gone.