Dementia From the Inside Out
After about a year of being anything but settled, I put my 2nd cup of coffee on the edge of the desk and looked forward to reading some of my friends’ essays on Open Salon. I had sworn when I joined Open Salon that I’d never be one of those folks who just silently fell off the grid. I became one about a year ago as me (and my family) began the tedious rounds of testing that finally yielded a diagnosis just two months ago. I hadn’t figured out how to get back on the grid until Scanner published his piece about his mother who has Alzheimer’s. Hi Scanner, Lea Lane, Joan H, and Hells Bells for a few…the few I can remember.
Also I wasn’t sure how to write about this. I’ve written freely and graphically about my mentally ill child now substance free for 7 years; about teaching in a prison and learning a new definition of power and I’ve shared freely my life experiences with musicians This year, though, I’ve become one of those people doctors have diagnosed as being demented or having dementia, etiology or cause unknown. Not Alzheimer’s, not vascular dementia, nor the other assorted variations on the theme most of which are irreversible. Just plain old dementia or mild to moderate cognitive impairment…hardly a diagnosis, more of a description. It has also been a year that Pat Summit at Vanderbilt U announced she had Alzheimer’s and is continuing to coach basketball and of country singer Glen Campbell announcing he has Alzheimer’s and then doing a short musical tour. Thank G-d for them stepping up and being in the open about it. It has given me strength to write this. What I do know is that there is an abundance of information out there about care givers and G-d bless them!
I believe, however, that the times care giving falls short is because there is a lack of information on dementia from the ‘inside out’. I also believe that occurs because there is such a delay about acknowledging that is going on with your demented elder or friend. By the time it is obvious to everyone, it is too late for the afflicted one to explain what is going on. That is my purpose in writing this: to explain what I experience from the inside out. As I often tell my daughters: Take the best and leave the rest.
A bit over a year ago, Tall Girl (TG), my eldest daughter, was driving me home from her sisters; no particular reason for her driving except that I like to be a passenger and see stuff. Unless, of course, you don’t count the last two times I got lost at dusk and took two hours to get home. Thank goodness for the big Shell bubble that become my point around which I was able to get back on the track to home. When we got on the freeway, she pops the question: Mom, Now don’t take this wrong and it’s not meant to hurt you but do you think there is any chance you might have early dementia? I broke down in a flood of tears. One I was so relieved that I didn’t have to pretend anymore and second I could tell her I kept finding scrunched up pages I had written in the refrigerator and wondered who did it. So we began the aggravating, pulling, pushing that is seeming to resemble care these days. It has taken a bit more than a year to get the tests done, collated and discussed. I want to write about it while I still can so that care givers might get some insight into what dementia looks like from the inside out. But let me doff my hat in appreciation of caregivers first. It is true that the first people to identify something being ‘off’ is the person living with them. Tall Girl (TG) lives with me and caught me leaving the stove on twice the week before she asked me this. My youngest daughter, Baby Girl or BG just scoffawed at the idea saying I was just getting old. Well that getting old part is true, I’ll be 70 this September but it is more than the ‘normal’ aging changes folks undergo.
First I’d like to recommend http://www.caring.com as a core reference. It looks more than a bit commercial on the outside but on the inside it is rich with information on dementia. No matter what level of dementia a loved one is facing your lives will be forever changed.
So why did I believe TG? For about a year earlier, things began to change. At first I wrote it off to getting older, but I’m a wordsmith by trade and inclination and I knew I’d never write some that crap coming out of my fingers tips. I had a book contract…for the first time in a long while and I was so excited and happy about it..except it was harder and harder to get myself to sit down and write and I’m a pretty disciplined writer.
Once TG and I had the big reveal I was able to return to my morning writing routine. I do better in the mornings than in the evenings. TG knew it was okay for her to ask me what I was writing, if I was writing and if not, why not and sometimes it was okay for me not to write. The part I think bothered her the most was I began to spend more time in bed, feeling just generally exhausted. TG insisted I was depressed. I snapped back (that being unusual in and of itself since I am not by nature a ‘snappy’ person.) and told her that I was very very sad but not depressed and if I was depressed, so what? Now this is where your *mother* begins to get snappish at you for telling her what she is feeling. One should certainly know what one is feeling without being instructed by someone else. So maybe a case (mild to be sure) of pique on mom's part is okay. After all she is losing more than you might understand. In my case it was a year that another piece of my identity fell off when it became evident that I could no longer run our show/breeding kennel for Havanese and Bolonkas and had begun the difficult and painful task of finding homes for the dogs. It has also been a year when a brother, two aunts died. My supply of energy for social events just disappeared and my isolation increased.
What I hate? I hate feeling my mouth open working and the word I want will not come out, not then, not in the next few minutes. The response of people is one of a studied impatience and effort to find and offer the word. Then there is the terrible sense of ‘nothingness’. How does one describe nothingness..the sense there is nothing there. It is as if you are watching yourself scratch the inside of a balloon expecting a screech and there is nothing..nothing…nothing…nothing. It is different from silence and I think that is what is frightening.
I’m not sure how connected this is to feeling vulnerable. After the great reveal I know I drove TG crazy always asking her where she was going. It was different from the teen years with required check-in times. But the kind of queries I was using sounded to her like I was talking to and treating her like a teenager. I finally figured out that I felt vulnerable and unsafe out here on my five acres. Once we figured out why I was bugging her to death, she volunteers her travel information, sometimes putting her phone number on a sticky and putting it on the refrigerator. I figured out that I just needed to feel like I could reach out and touch her, emotionally, psychologically. It actually didn’t matter where she was…she could have been in the same or the next room when I’d follow her around. It was terribly hard on her and still is for both my children to come to terms with this.
I hate knowing that I’m going to have to give up my truck eventually but I’ve had two fender benders. For now I do not drive at dusk and do not leave the house until sun is well up. I hated my daughters having to come to my doctor’s appointments with me. Just tell them no, right? Well that seems an affront to their generosity of time and spirit plus I am just as liable to forget what the doctor said. We have gotten better at this. Both daughters are on my HIPPAA permission so the doctor can talk to them if need be. I make it clear to the doctors though that I am the patient and do more on my bad days than most people do on their good days. So please do not talk over my head to my daughters. I also emphasize that I need them to write all instructions down, especially any med changes. I’ve been fortunate in having found a primary care physician, a cardiologist, pulmonologist and a sleep med doctor who understands this. I travel with a pad and pen.
I’m supposed to carry my cell phone at all times. I don’t. I’m not being obstreperous, I just forget to tuck it in my purse when I leave the house. I have a pill minder now, but I am the one responsible for filling it. Recently I’ve had to come up with an idea of how to mark the bottles when the supply is running out mid week. Another thing I find distressing is that I forget how to operate things I’ve operated for years. The forgetting how to do it is not steady or consistent. I might be an engineer par excellence one day and then just sit staring at the mixer wondering what the heck I am supposed to do with this. I hope you can hear a theme running through here: let mom be in as much control as you can allow her. I think the idea of using her car to drive to visit her and take her for ice cream is wonderful.
I enjoy going to the mall especially with BGG who loves the play area in the mall but I HATE shopping. Figuring out change, engaging numbers on almost any level can set me off into a panic attack. TG shops with me and stands with me at the check out station. Some days I’m up to using the debit card, others my mind just doesn’t want to handle it provoking irritability on my part. I just looooveee (sarcasm intended) the days I think I can do it and then I just stand there staring out into nothingness while my brain is, I presume, scrambling to figure out what the hell I’m supposed to be doing.
Family: My granddaughter has been a life saver, when not being a back breaker! And the birth of my grandson, a down’s syndrome baby has forced me out of thinking about this too much. Baby granddaughter (BGG) has been a miracle and this will be the first time her mom and aunt read about this. BGG is now 22 months old and brilliant if I do say so. But in addition to the brilliance she seems to know when I am in ‘nothingness’. At those times she comes, grabs my hand and says: Go, go , go Patie and heads for the back deck, a favorite place of mine. In this sense she reminds me of the enormous empathy I get from my dogs. I am desperately frightened that I won’t have my dogs at all. Trying to keep up with people, issues, etc is exhausting and with BGG and my dogs they are the supreme empathizers letting me just be, cuddling and sniffing.
I do only microwave cooking when I am at BG’s house with the kids. A stumbling block, though, is similar to the one we encountered with TG, my daughter with bipolar disorder. Not everyone has access to each and every part of us, so we forget sometimes when we interact and the interaction gets messed up, that we are talking to or trying to communicate with someone who has a neurological impairment such as dementia or bipolar disorder. It’s like you are chatting along and the person you are chatting with comes up with something so off the wall you sit there gobsmacked as the brits would say. TG tells me that if I think she is funny, I should be sitting where she is looking at me…it’s a bloody demented riot! Humor is a life saver! And sometimes the more macabre the better.
My girls were a bit aghast a couple of times when they accompanied me to the bank and heard me say to the teller: Look, Mary, I was diagnosed with early dementia about two months ago so this is going to take some time. It’s hard to let my girls into my financial affairs. I’d rather keep going without sex than share that information. BG is a hard nose number crunching accountant around whom I feel intimidated some time. Please understand part of that operates around my inability and anxiety producing efforts to deal with numbers and stick forms eg triangles etc. So we are working it out getting the accounts straightened out (I had 10 accounts spread from SC to PA and I’m not wealthy in any way!) Just small accounts for this, then for that etc. Once they are all transferred or closed banking business will be conducted from one account. I’m sure I will be put on an allowance in the future and, inasmuch, as I know that is a good thing, I just hate the idea of it.
Staying put: My family knows how important my ‘farm’ is to me. So as long as TG can stay with me, and everyone sticks to the ‘check in’ schedule, we’ll try to keep me out here. My daughters worry it is too isolated. Well it is but I like it like that. Can you imagine what it is like for a wordsmith to try and have a social interaction with someone and the words just won’t come out? Painful! And I watch the person getting more impatient and I just cannot make words come when they will not. Please, if anything of mine you read begins to look like gibberish, don’t be shy about letting me know!
We have a Center on Aging adjacent to our little library and that is about as far as I care to go from the homestead. I do most of my doctor appointments on my own, but that’s because we have 3 calendars working! And I’m still able to drive the 22 miles to BG’s house to visit, play with the kids and take photos. I have gradually moved to photographing more as the words continue to disappear. And that seems to be working in keeping me in the here and now.
They want me to do puzzles….eeek! I have tried, seriously but it is just so much work in my head..makes my scalp hot. But I found another kind of puzzle: http://www. ancestry.com Doing genealogy work is doable for me right now and enormously rewarding.
Scanner, thanks for writing about your mother which gave me the strength to write this. And if others have ideas that are working for them, please share!
Copyright 2012 Patricia B McRae