I've written about my mom in comments, but never a diary about caregiving for an aging and disabled parent. This is personal, of course, but affects many people of my generation and perhaps our story can help some of you.
Mayo Clinic Dementia info
We got some excellent education from the Mayo Clinic site (disclosure, I have family connections to the clinic). Once we began to realize that there was something happening with mom that wasn't good, we started researching, found a doctor, and eventually got the diagnosis of dementia, not Alzheimer's. She had blockage in her carotid arteries, but that wasn't likely the primary cause of her memory loss. We'll probably never know the primary cause.
Family Caregiver Alliance site, dementia info
Another site we found helpful.
Why I should avoid teh Google sometimes
In my frenzy to fix things for mom, I spent some time searching for alternate problems. This isn't a bad site, it's just not where I should be going these days.
UPDATE: I hate people who leave active diaries, but I'm beyond dizzy and starting to ache. I love all of you, I thank all of you, and I wish I was better enough to stay on.
Yesterday was a bitch of a day. I cried for 3 or 4 hours of it, played Solitaire online for at least as many hours, and spent even more hours in my head making words out of words. (Text Twist) It was exactly the same kind of day I spent when we were doing end of life care for my sister as she was dying of cancer. I couldn't handle the reality of what was happening, so with each step into new territory I turn inside, hide, and grieve.
Our new territory is this: we can't do this anymore.
I live with 2 sisters, 2 nieces, and mom. We share a large and lovely home in the Hill Country of central Texas, a home one sister and her husband created out of an existing structure that was never finished. They made a decision to add an in-law apartment during the long construction phase when the family got word that mom had deteriorated to the point of electricity being turned off and mortgage payments being late. Mom paid all the bills, all the time. Dad was hopeless. Mom had a better credit rating than God and mom no longer knew what a bill was, or a checkbook for that matter, but she and dad were so good at covering over their reality that it took a crisis for us to learn what was happening.
She and dad lived in their sweet little place for about 5 years, and then dad died. By this time all 3 of the remaining sisters were sharing caregiving/household expenses/community tasks, and we still managed not to know how bad mom's dementia was. She's very present in each moment, so a conversation can seem perfectly normal. We'd spend a bit of time with her, dad hovering nearby, taking her back to the apartment when he knew we were going to see what he didn't want us to see.
She's sweet and funny, very grateful to be cared for, easy to manage most of the time. There are no hideous personality changes, no rages, no paranoia. She gets stubborn about food (Oh that's waaaaay too much for me, you eat this), and her OCD-ness is out of the ballpark, but we laugh a lot in spite of it all.
There are those days, though, days when I think I'll scream if she asks me one more time "What am I supposed to do with this?" Everything is her problem, you see. A pencil on the counter needs to find a home, the newspaper is rearranged a hundred times a day, I often find a small pile of carefully folded Kleenex next to the box, or toilet paper folded neatly on the back of the toilet. It took two weeks to find a pair of shoes she'd hidden, she often has my mail in one of her drawers. She takes dirty socks out of the laundry basket and lines them up on the floor next to her dresser. She saves strange things - empty toilet paper rolls, envelopes, actually just about anything to do with paper. Some nights you wait for her to go to bed before doing dishes because she'll hip check you to keep you from splashing water into the sink she just dried out. "Oh dear, oh dear, oh dear, I'm not doing this right."
She carries over a hair she picked up off the floor and asks what to do with it. When you tell her to throw it away, she can't. She just carries it around and perseverates about what to do with it. The list of wierdnesses is almost endless and 3 hours is about the max for any of us. At that point we have to walk away, read, nap, smoke, whatever - anything to avoid having to say (AGAIN!) "Mom, it's okay, it's mine, I'm using it, it needs to be where it is." "Mom, Carole is doing laundry, we'll take the clothes off the line when they're dry." "Mom, (fill in the blank)" Or how about "Mom, it just isn't your problem. Give it a rest!" That's when you call for backup at our house.
This week she's had diarrhea 4 times. It involves a complete cleanup of the bathroom - toilet, walls floor -, a shower with accompanying distress over the shit that bounces off her body and onto the shower wall (she's usually coated from the waist to her knees), rinsing out everything she has on from the waist down and getting it into the washer. I always said the one thing I couldn't do was diaper a parent, clean up that kind of mess. I was wrong, I can do it, but it's awful.
We're having one of those hideous paradigm shifts right now. I fell down 3 weeks ago, fell down the stairs and broke my collarbone, wrenched my shoulder badly, and had a significant concussion/head injury thing. I'm still dizzy a lot, tired, and in a whole lot of pain. I'm allergic to almost every major painkiller so dealing with the pain is exhausting. This is what pushed us into reality. I'm not much help. I can't do showers anymore, and cleaning up the bathroom on Monday left me in severe pain for a few hours. Most of the load has fallen on one sister (two of us work part-time as musicians so we can split the majority of the caregiver job). The other, the main wage-earner, is having to come home and take evenings, cooking dinner, etc.
I've never felt more guilty in my life. This is my job, I agreed to take it on, I knew it would be tough and it was what we all wanted to do. Now I'm essentially useless, and I'm watching what's happening to my sisters.
Worse than that is that we're seeing a serious deterioration in mom, something all of us avoided knowing until our routines were thrown off.
The bittersweet part is this: mom is a homebody. We chose home care because she was so uncomfortable outside the house, outside the family. We've felt as though we could make a safe and familiar place for her to end her journey and that's been our top priority, and now it seems as though it may not really make a difference.
She had what her doctor called a cardiac event about 3 months ago that resulted in a referral for hospice care. Her heart is slowing down, her blood pressure is gradually lowering. She had some pain that night, and was deathly pale and cold, but she pulled out of it. This could happen any number of times and she could be fine, or she could die tonight. It's out of our hands. We chose not to send her to an emergency room once she stabilized. That was the first high-level family conference, all 3 brothers on the speaker phone. Mom and dad entrusted us with detailed DNR/end-of-life directives, financial and end-of-life powers of attorney. We handled this about 12 years ago when mom was still coherent, and we've had serious discussions several times since. Once we told the doctor there would be no pacemaker installed, no heart cath, no invasive procedures at all, he contacted Hospice Austin for us.
The Hospice Austin people are amazing. Mom has a weekly visit with the nurse, aides twice a week for showering assistance, a Chaplain every other week, a Social Worker we have access to 24/7. We have two volunteers who each give us 4 hours a week so we can run errands, practice the organ, get haircuts. They are uniformly sweet with her. What hurts, silly as it sounds, is that she relates to them exactly the same way she relates to us. They're people who are nice to her and help her with things, and she likes them. And we're people who are nice to her and.........
.........NO, I'm your daughter, your eldest, your rock, your protector. I washed clothes in a Maytag wringer washer when I was 8 years old because you were so tired. I cooked dinners for 9 people as soon as I figured out recipes. I created chore schedules and supervised Saturday Morning House Cleaning. I bathed infants and sterilized bottles and made formula when you were overwhelmed by having twins. I wasn't yet nine when they were born and I raised them for the first two years. I taught my sibs how to do homework, I told my sisters about menstruation and sex. I have no idea where I learned any of it, I just knew there were a lot of things that needed doing and no one else was doing them. It's part of being a family - you do what needs to be done because you love these people, and they need something from you. If you have it to give, you give it.
So here we are. She doesn't know me, us. She doesn't remember dad. She's always taken aback when we tell her she was married for 60 years, she had 7 children, she's an accomplished musician and was a wonderful teacher. Every once in a while she recognizes her parents or sisters in a family photo, but not often anymore.
The thing I hate most is that she's bored. She doesn't remember how to do anything. She reads newspaper headlines over and over again, and is always astonished - "Did you know this?" Television annoys her (good on you, mom), she now closes the door when we have music playing or are practicing. Too much noise. I think the sounds aren't music anymore, they're just noise. I was born knowing Bach, now it's an irritation for her.
And we're bored, bored to death, bored and numb and begging for the patience and the courage and the love to do this today and tomorrow and for however long it's necessary. You can't read when she's around. If you get lost in a book or a movie she could end up doing something dangerous - poking at the fire and leaving huge burn marks in the carpet, turning on the oven in the apartment and leaving it on for hours because we didn't know she'd been in there. Wandering down the driveway to get the mail, and not coming back, and standing in the ditch trying to figure out how to get home, looking terrified when we finally located her.
Every day is the same. "Mom, we're going to water the plants now." "Do I have to?" (It beats the hell out of picking up down feathers around the bird cages, mom.) Oh god she doesn't want to do anything, just pick schmutz off the floor and obsess over what to do with it. Make and remake the bed. Line things up, any things, any where, all day long. Clean the kitchen sink, clean the bathroom vanity, change clothes, pick things up and ask what to do with them "But what about this?" "But what about this?" "But what about this?" "Maybe I'll go lie down".
I spend way too many hours here, jumping up every couple of minutes to find her if she's out of sight. It's my lifeline, a place where people share ideas and philosophies, where people are fighting for better lives for everyone, where I learn new stuff and get irritated by stupid stuff, where I wonder "Who on earth forgot to teach you how to think cogently?" and to wish I knew you in the real world, that we met for coffee, that we found candidates for the Planning Commission together, that I could call you and say "I can't do this anymore."
I lost 4 days of my life when I fell. I don't remember how I fell. I remember being in the Life Flite helicopter, seeing a roll of surgical tape hanging on the ceiling and wondering what on earth was happening. I remember being in a CT scanner. I remember sitting on a shower chair once I was moved out of critical care, having my daughter try to wash the blood dreadlocks out of my hair, being cold and wondering what on earth was happening. I talked to people, I answered questions, I was apparently present, but there's nothing there for me. I was my mom for 4 days, but now I'm me, and I know what's happening around me.
When I was gone, I didn't know I was gone. It must be the same for her, but she'll never have the chance to look back and think "Wow, that was weird." Maybe you get answers after you die. I like thinking about her and dad meeting up, talking about this really strange decade, being so damn glad it's over.
We're looking into nursing homes next week. We have a great resource in our social worker - she knows the dirt on every place in town, and which ones are great. She very gently told us that mom might be happier in a busy place with lots of people around, more activities, people with training in dealing with advanced dementia issues. She can see how beat up we are, how inadequate we feel as this lousy illness progresses. We are finally accepting that we may not be able to provide mom with a decent quality of life at this point. We're daring to think we may deserve to rediscover a quality of life for ourselves. We're challenged by a hard truth: she doesn't know us anymore, she won't miss us, she'll acclimate to a new place and new people, and we'll be the nice people who take her to lunch every day.
I'm 60 years old and I want my mom. God this is hard.