My mom and dad served in the Navy during WWII, dad in the Pacific and mom in San Francisco. Mom was the fastest typist I've ever seen - that was her Wave duty, and she did it exceptionally well. My favorite pictures of them were Navy ID photos they had gotten blown up to 10x6 and framed. Mom was gorgeous, dad was handsome, and they both looked serious and determined to do what needed to be done. Dad rarely talked about his service experiences, and I understand that many vets don't. I know he was on a ship and saw some action. That's it.
6 years ago my sister and her husband reclaimed a house that had never been finished, and added an apartment for mom and dad. Things were going to pieces in their little household - mom was the bill-payer and household organizer, and she wasn't staying on top of things. It was our first clue that her throwaway jokes about having a bad memory were more than age-related slowing down.
She has dementia, but dad did a remarkable job of covering for her for several years.
Link to mom's world
The only personality change we're seeing is a steady increase in obsessive-compulsive behavior and thinking, something she's always exhibited. She's sweet, and funny, and profoundly committed to finding out "What am I supposed to be doing with this?" This includes the newspaper, odd grocery receipts, mail old and new, a stray hair picked up from the floor, the contents of her purse or mine, leftovers, breadcrumbs, or the dishes she's drying (the only task she still undertakes). She folds and refolds and refolds the dish towels, has a strange attachment to the dishcloths I knit from cotton yarn and must retrieve daily from her dresser drawers. She has two regular correspondents, friends from grade school who continue to write, knowing they'll never hear from her, just get updates from one of us. God bless them.
The day a letter arrives, mom reads it to herself, and then follows us around, reading and re-reading, "Did you hear about this?", re-reading again until my hair hurts. She moves the letter and envelope from surface to surface, re-reading with each change of location, and eventually tucks it into her purse, for further perusal in the car, in the grocery store line, at church. We finally confiscated all the copies of "The Burial Office of ....", the bulletin from dad's memorial service. She had dozens of them secreted away, and we had to tell her the story several times a day for months.
Once we lied and told her he was at the store. She was missing a couple of hours later, and a panicked search located her at the end of the driveway, fretting about how long it was taking him to come home. We never lied again, just repeated the story, reassured her that she'd known, she'd been with him, she'd comforted him.
Dad died Sept. 27th, 2008 - 23 days after their 60th Anniversary. It was a Sunday morning. I was playing for the mini choir rehearsal before the 10:00 service, and the director pulled his cell phone out of his pocket and said "I wonder why your sister is calling me?" Because something's really wrong. - I think I said it out loud, I grabbed the phone, I called home.
"Dad is dead. Carole is coming to pick you up."
Dad, not mom hit by a car while retrieving that Sunday paper, but dad, whose mind may have been even sharper in old age. His body was betraying him after 80+ years of excellent health, but he was strong, we thought, and prostate trouble was the only serious ongoing medical issue we knew about.
He was on his side, on the floor, one hand poised over the side of his face, translucent in death and so beautiful. He looked serene, and it was clear that he wasn't sleeping, he wasn't resting - this is the look of death. Mom had put a pillow under his head, and covered him with a quilt, but kept his feet uncovered. He couldn't sleep if his feet were covered. Neither can I.
The police were there - an unattended death has to be investigated. I asked them for some time alone with him before they started in, and they left me. I sat beside him, touching his face, telling him I love him, saying Please don't be gone, I'm not ready. I put my hand on his forehead, and retrieved the Benediction from who knows where in my memory. I spoke it, said goodbye, and left the room.
[Leaving out surrealistic investigation by police, because dementia patients can be violent. I'm still too angry.]
Dad died of an aortic aneurism in his belly. It broke open, he got up to pee, got dizzy and fell, and was most likely dead within minutes. I don't know if he was afraid, and that haunts me. His remaining 3 daughters had come together to care for our parents, and he died alone, maybe afraid, maybe wondering why we weren't there? It haunts all of us, really, even the brothers who were hundreds of miles away.
There are now 6 of us sharing this house. Jo owns the house, Carole built a little apartment off the garage, and I share the apartment with mom. Jo and Carole had baby girls 6 months apart, and they are now teenagers and close friends. It's estrogen heaven here - menopause and peri-menopause and puberty. And mom, way beyond menopause.
I moved in a year ago, 4 months before dad died. The caregiving job was getting too big for Jo, a special ed department head at a local charter school, and Carole, liturgical musician, voice teacher, performer. I jumped at the chance to leave a deteriorating work situation and Minnesota winters.
Dad had had a series of infections in his legs, one requiring hospitalization. He needed to be taken for physical therapy 3 times a week. When he was ill, mom was terribly agitated and needed more care than he did. We figured that between the 3 of us we could do this and not burn out. I got a job playing at the Catholic church, and planned to teach piano, but that's not going to happen. Someone needs to be fully flexible for mom care, to work around some very complex schedules, and I'm it.
My first 4 months consisted of getting dad back on his feet, hassling him about his/their diet (frozen dinners from the dollar store, fruits and veggies sold cheap because they were going bad, fish and meat over the verge of toss it and call it a loss. And keeping mom as calm as possible.
Dad was also fighting bladder infections and lost bladder control - humiliating in the extreme, but the doctor's suggestion of Depends was even more humiliating. We tried to keep disposable hospital pads under him, but he resented that too. I did a lot of laundry and tried to keep his Lay-Z-Boy from toxic dump status. I took him to PT and the doctor's office, and made sure he took his antibiotics. I tried to cook dinners, but that made him feel old and helpless, and I finally let it go. He watched golf and MSNBC all day, was passionate about Barack Obama and donated money until Jo put her foot down loudly. He watched football and baseball games, and gave us up to the minute score reports, and play-by-plays of the really exciting moments. None of us are fans, but he was so excited we stopped everything to listen. It's the thing I miss the most - the sports bulletins in the evening.
We didn't find out how helpless mom was until dad died. He protected her fiercely, and she was damn good at covering, as well. Had we known, we could have tried medication earlier. It has helped in some ways to have her on Aricept, but not enough to allow her to really function. She's brighter and more engaged, doesn't nap 6 times a day, her eyes have life in them. She loves John Stewart, and old movies, but otherwise television irritates her. We've bought CDs of music she used to listen to, and a grandson makes her special CDs - Kingston Trio and Andy Williams, Perry Como, Broadway Show tunes. We have her classical music collection. She loves listening, but it doesn't occupy her time. She fusses with the dishes, cleans the sink dozens of times a day. Sometimes she empties wastebaskets, but it upsets her that she doesn't remember where to return them. We tried to get her involved in our quilt making project - she made dozens of them when she was still able. It just frustrated her.
The hell of this is that she's bored. She's a bright, incredibly competent woman. She was a good cook and a world class baker, but we had to disable the stove in her apartment to keep her safe, and the house standing. She did laundry for 9 people for years, and now we have to watch to make sure she doesn't try to run the washer - bleach, detergent, and fabric softener are interchangeable for her, and there have been some expensive bleach disasters. On good days she can fold clothes, but gets annoyed because she doesn't know what belongs to who. Making piles for people to carry away drives her wild - it's too chaotic. (Folded clothing goes in dresser drawers, you know? And I have no more idea than she does how to sort all the underwear out, or which pair of black shorts goes to which person.) She has a vast e-mail contact list, and wrote to her friends and relatives at least weekly, but that's so far beyond her we don't even suggest it anymore. She'll sometimes write one paragraph to her friend Kay, but I have to coach her, and spell the words for her, and she gets tired of it fast.
On rare occasions she'll sit at the piano. We keep music she loves open for her, but it's frustrating for her - she was so good, and now she struggles with a simple melody line. When Carole and I sorted her music, we found organ books from her days as a liturgical musician. She was outstanding, and we didn't appreciate how much she put into it, how complex the music was, how much time she put into working out and writing in the heel/toe/slide symbols for pedaling, or the wonderful stop changes she added.
Yesterday a friend said "Don't underestimate how stressful this is." It took hours for me to figure out what she was saying. 3 hours mom duty is the maximum I can handle without a break, or without beginning to crack.
We have to trick her into eating enough to keep her weight from dropping to a dangerous low. We have to be alert every single minute, not just to keep her safe, but to avoid the loss of important mail, debit and credit cards, driver's licenses, utensils - you name it and she might become enamored of it. Once a week we search her dresser and return things to their proper place. Right now I'm looking for my round brush, a kitchen scissors, her Humana card, Carole's license renewal form, and a bill that needs to be paid. They could be anywhere.
The heavier responsibilities have to do with her health. When I was 3, she miscarried a 4 month fetus in her bed because dad was making hospital calls, and preacher's wives have few close friends in most parishes. She couldn't call for help, she couldn't inconvenience anyone. She had diverticulitis for a long time before she could no longer mask the pain. She almost died from a tumor in a fallopian tube, and this was long before her memory went. We have to watch, and guess, and take her to the doctor with no clear ideas about what might hurt, or where it hurts - we just know she isn't okay.
The heaviest sorrow is that my mother, who was a dear friend after I was married and a mother myself, is now a toddler. We have no parent left since dad died, and that increases the grief. There's a woman in our house who looks like our mom, and even sounds like our mom, but she's not mom, and that's a little twinge of pain every day.
We're doing this because she needs us, because we want to give back some of what we were given. We're doing this because she's so shy, and so dependent on home we're pretty sure an institution would kill her fast. We keep going because she's funny, and sweet, and so grateful for the people here who are so nice to her, and she loves this place.
We do it because we can, we're incredibly lucky, and we can.