It has taken a long time to write part 3 of my Alzheimer's journey because it was the hardest part and I keep waiting for a day when I can say the word, Alzheimer's, without my eyes beginning to burn with unshed tears. Apparently, that day isn't coming or maybe it's just so much further in the future that I can’t imagine it. Maybe I just need to write it out and hope that by doing so the last tear will fall when the writing is complete. This is what happened to me at the end, as in the quote above, perhaps this can be someone else’s survival guide. There are tons of sources for what happens to the Alzheimer's patient, not quite as many on what it's like to walk the dark hall of the illness as the caregiver

I almost lost my mind. Truly, I almost lost my damn mind.

Alz care mind

I created this small piece of fabric art to express how dark my mind was during The Last Part.

The Doors song, “The End” is now playing in my head. I could no longer see a different future for myself, I had given up on myself.

Naively, at the beginning, and even in the middle, I thought, “I can do this, I’m a strong women.” I mean, he’s going to forget stuff, so, no big deal. Yeah, I actually thought that. Even Pollyanna would have known better.

The Last Part is the part where you are really on your own. Yes, you have family and friends who help and support groups to talk to and share with and you have doctors who can advise you, but you are still really alone. All the decisions are yours alone, all of the emotional and physical housekeeping are your burden alone. I'm not talking about who will do the dishes or laundry, I'm talking about the actual housekeeping of a human being. Every detail of their life must be managed by YOU, the loved one, about your loved one. You have to decide little details like, “Is anyone going to be upset that I am bringing a grown man into the women’s bathroom because he needs his Depends changed?” when you are trying to shop for groceries. You are the one that has to explain to the store manager that your husband didn’t mean to take that donut out of the display case and eat it without paying for it.

Your day never ends, ever, it never ends. It goes on and on. The last five years were ceaseless plodding down an unfamiliar and changing path. I tried to walk proud, be positive, stay occupied and keep a smile on my face but during The Last Part, I confess to so many, many days where I could barely crawl through the long tunnel of the day. Hours would go by with me just sitting next to him on the couch watching mindless TV shows because he would not allow me to do anything else. Just sitting for hours, day after day after day. Does even the most popular person have enough friends to stop by for a visit as often as I needed someone to come and have an adult conversation with me? The internet helped. A little. Imagine trying to do something, the simplest task, with an adult human hovering over you, asking repeatedly, “What are you doing? What is that thing? (pointing at the computer screen) When did we get that?” Over and over and over and over and over again. If they aren't hovering over you, you better get up and see where they are; pulling things out of drawers, chomping on dog food, or opening and closing cupboard doors incessantly. These things seem trivial writing them and trying to describe them. You're thinking, "So my toddler does that." Except they aren't a toddler, they are a big, full size human, weighing over a hundred pounds that you cannot simply lift and move to a different location. 

The only thing that broke the repetition cycle was to get up and do something dissimilar, so articles were left on the screen unread and emails left unwritten because I just could not stand to hear him ask those questions again. I just wanted to scream, “LEAVE ME ALONE!” and sometimes..... I did and 10 years later I still feel bad that I screamed at him. I still wish I could take it back, it wasn’t his fault, I knew it wasn’t. But I screamed at a sick man. And you will do that, you think you won’t but you will because you are only human and you will crack. You will absolutely crack. It’s ok. That’s when you need to call your support person and cry on their shoulder. Find your support group now, the day will come as suredly as leaves will fall from the trees in the autumn of your loved ones life. The day will come when you think to yourself, "I just cannot take another day." And there will be 50 more days just like it.

Sometimes you can’t even do that; call someone, go for a walk around the block for a bit of fresh air because you cannot leave them alone. Not even for a minute while you make them a sandwich in the kitchen. I was living with a 150 pound toddler who could reach high places, open and unlock doors, leave water running in the bathroom, eat strange things like crayons or potpourri, or pee in the corner of the living room. Yes, pee in the corner of the living room. And I had help! My children were teens and in college at this time so I had help, yet still it was not enough to cope with the struggle because they had school and jobs. My memory now of The Last Part is a memory of being in a darkened room, a TV droning on, floors needing to be washed, shelves requiring dusting, laundry to put away, meals to be prepared while I sat and just sat and did nothing

The day I asked my children for help, "Mom we've been offering to help you for a long time." Well, that time had come. Sometimes my son would take him for a burger and I would just sit on the couch in the living room, alone, and breathe.

You may think, ‘just have your husband join you’ in folding laundry or have him sit in a chair while you mop the floor. It seems so reasonable, until you are on the journey. My husband would walk across the wet floor (danger of him slipping). He would undo the folds and put the clothing in places that we didn’t find for weeks. Dusting, a simple task? Not with Alzheimer’s in the house.

Sleep? That’s elusive for everyone. Their mind clock becomes dysfunctional so sometimes night is day and you can’t leave them alone while you sleep so you are awake and dreading the next day because you will have to drag your exhausted brain through the day. I did ultimately have his doctor prescribe sleep aids for him and most nights he slept through the night. Except for one night. I became accustomed to him falling sleep after 2 hours of giving him his meds. That was when I would take a shower (showering alone becomes an issue too, they want to join you) because I believed him to be safe in bed asleep. One night during a snow storm I came to bed after my shower and he was not in bed. He was not in the house. I opened the front door and saw fresh footprints in the snow leading to the neighbor’s house. I found him, in his pajamas with just socks on his feet in the neighbor’s back yard. I am not a person who takes long showers, it did not take him long to get out of bed and out of the house. Now you know you need a new plan. You always need a new plan because the rules change all the time. You see, meds that work on the regular population don’t always work on the Alzheimer’s brain because their brain is no longer typical, ‘effects may vary’.

There is a part in the TV series, "This Is Us", where the spouses of the Person family are in a bar talking about the challenges of living with them and the ghost of their father and husband. Finally, Miguel says, “You know what? That family went through something, they all went through something really painful.” That hit me like a brick because "That Was Us. We went through something, boy, did we go through something. We went from being the lovable, peculiar family of Little Miss Sunshine to the family who had lost everything.

I lost my husband. "You are a widow long before your husband passes away.", his palliative care physician told me once during a visit. I lost my savings account, it comes down to, work and give all of your money to a care facility or do you quit and stay home and try to survive on his SDI? Whatever you decide, do not spend one second on feeling guilty about your decision. I lost my home because SDI isn't much. And I lost my mind. 

The four of us, my children and I, and my mother, who held my hand the entire journey still cannot speak much about the road we traveled, we still get choked up or shed some tears. It was incredibly devastating to watch someone die, day by day; a man who once ran the engineering department of a large corporation could not even bath himself. Or speak. Or feed himself.

A friend asked me a few weeks after his funeral, "So what are you going to do with the rest of your life now that you are free?" I didn't have an answer because I didn't know I was going to have a "rest of my life". I thought I was at the end.

The Last Part came. And it took my depression with it and slowly my mind came back. I learned to live each day fully, to pursue my long lost goals, revitalize myself and be a part of the living world, however difficult it can be sometimes, because I know that if I can live through The Last Part, I can tackle almost anything.

Ten years later I awake daily ready to face a new day of adventure, look the world in the eye and tell it, "You are not going to bring me down." That's my story, yours will be similar but different. You will make it.


Deborah Baron

Deborah Baron

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