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Awareness- it’s not just a t-shirt
Twenty-five years ago Ronald Regan announced that November is National Alzheimer’s Disease Awareness Month (NADAM). Every Monday, for the rest of the month, I will be sharing information with you about this horrible and soul-sucking disease that lives in my house.
Being aware is one thing, and a huge thing at that, and I think that those of you that know me, know my struggles with GM, have a front row seat to this disease that many people do not. You see how devastating it can be, how it changes the landscape of a family, how it damages not only the mind of the person suffering with the disease but also the bodies of those that take care of them. I hope that if there is an opportunity you can help educate others about the disease. Encourage others to sign this proclamation to make Alzheimer’s a national priority.
Care-giving. I just looked it up and the definition given seemed so sub-par. “A person who attends to the needs of another.” It just doesn’t seem full enough of a definition. It doesn’t cover the bubble that you live in when you take on the role of care-giving. The loss of self that happens, the loss of time, of creativity, of years.
When GM & I joined Mother down in Florida a few years ago I suffered a big change. The support system I had in Alabama was no longer available to me and I felt incapacitated with inability to do it ALL. I became more and more depressed and my entire body hurt. After much debate (internally) I opted to talk to a doctor about it and she diagnosed me with care-giver’s depression. (click here for an interesting article about caregivers of family with ALZ)
The medication that came with the diagnosis helped me climb out of the darkest of spots, but it was really up to me to change how I faced each day. I needed to stop trying to be a hero every day, stop trying to be perfect, stop trying to do it ALL. Honestly it was a huge lesson to learn that the sun will still rise if the kitchen is not scrubbed down every night and the clothes in the dryer are still damp when I go to bed.
I also needed to learn that just as GM has specific needs I do too. I need to have a creative outlet. I need to be able to get out of the house by myself at least once a week. I need to have time where I can unplug from the task of caregiving and just sleep or watch a movie.
I sought out the assistance of a respite care program from a local church and now I have the wonderful Ms. D that comes by every Thursday afternoon and gives me several hours to do whatever I need to do. Some days I need to run errands, but before I do anything I make sure to give myself an hour to just sit an a coffee shop and read.
I also learned how to ask for help. When I am tired or at my wit’s end I have gotten better about calling Mother and asking her to come home early or let me sleep in on a weekend. Asking for help is huge for me, but I have become a better caregiver because of it.
If you are a caregiver make sure you are taking care of yourself first. Take this quiz to check your stress levels and find out how you can get help.
This month a portion of every header design completed and all ad revenue generated will go towards Alzheimer’s research. If you want to donate directly you may do so here. (and let me know so that I can thank you!)
When Fears get a name
Today GM has an appointment with a cardiologist to see if she can withstand surgery. Surgery. I still can’t get my mind around this. It feels like everything in my head is saying, “no!” “bad idea!” I have spent some time researching on-line the effects of anesthesia on patients with various degrees of Alzheimer’s. Finally I stumbled across the name of my fear: Postoperative Cognitive Dysfunction (POCD)
I have read furious message board comments from children of patients with Alzheimer’s that were literally promised that anesthesia would have no effect on their parents dementia only to never have a conversation with their parents again. I just am not ready to go to that place with GM.
The surgical oncologist wasn’t able to answer my questions I had about anesthesia, but I wonder if I ask the assigned anesthesiologist if s/he will just give me a rote answer. Will GM be the same when she wakes up or will she be gone?
It seems like no one can safely say one way or the other. For some dementia patients their cognitive loss can last as long as 3-4 months. Is it worth it? I just wish someone could tell me.
I have a feeling this will be a very hard week for our family. I’m so frightened.
Morning becomes elusive.
As is our giant fear whenever GM has a change to her routine, she completely disconnected from reality Saturday morning. By Friday afternoon the Mickey Mouse swelling had significantly gone down and her pain was easing up, but she wanted to sleep and we felt that sleep would be the best thing to allow her body to begin to heal.
Saturday morning I heard her stirring in her room and went to help her get up. We walked down the hall to the bathroom and I presented (as I do every morning) a small dish that contains her morning pills. A shiny oval pill was a new addition (antibiotics to take after surgery) and she selected that one first. But then the pill wouldn’t swallow. Swallowing is something that we are beginning to have a problem with. I usually have success by putting the pill on her tongue and getting her to use her index finger to push it back a bit, then I give her a big gulp of ensure and the swallowing of the liquid gets the pill down.
But this red pill was pretty much the devil.
It wouldn’t go down, or would go part way down and get stuck, or would get caught in some odd crevice of her teeth. The confusion and difficulty was so utterly disorienting for GM that she began forgetting how to open her mouth or move her hands. As I tried to place another morning pill on her tongue she pulled her tongue back or closed her teeth down on my finger. At first she was doing it out of confusion, then it seemed like a game for her and finally it was aggressive.
It took forever to get the rest of the pills in her, but I knew we had to- especially the anti-anxiety one, but by the time we were done GM was pretty much in another mental state. She had no idea who I was, where she was, why I was touching her…She pulled her hands away from me, slapped me, dug her feet into the floor and yelled. I called for Mother to help and she took over getting GM into her room and seated in her dressing chair.
Getting GM dressed was horrible. I could elaborate, but you know how remembering moments of life bring back all the awful emotions connected to it? I just don’t want to relive the feelings.
I will say that yesterday morning was a day when GM was totally gone and her disease was front and center. All of the worst parts of Alzheimer’s- the paranoia, the hostility, the aggression- had taken over my Grandmother and it was brutal.
There was a weird moment where she allowed Mother to walk her out to the den and GM did not want to sit on any of the chairs and then would ask us where she should sit. We would suggest one of the many options and she would snarl back that she wouldn’t dare sit anywhere where we wanted. Mother and I kept looking at each other using our eyes and eyebrows to code out messages like, “what the fuck do we DO??”
Finally she announced she was leaving and slowly shuffled back to her room where we heard her sit down in her dressing chair. A moment later we heard her flipping through her bedside Bible. Mother said we should just leave her alone, which was hard for me. I have a horrible need to try to connect with GM when she is disconnected. I will try to find some in- whether it is talking about a book or her parents, or football- anything to bring her back. But really I should just let her be more often.
Two hours later she shuffled to the door of her room and was barely able to stand. She called out that she needed to go to the bathroom and as Mother leapt up to help her she turned to me and mouthed, “she’s back”.
I think what gets me in times like these is that I imagine so many people think Alzheimer’s is like what the drug companies present to us in commercials that air during the nightly news. An adorable older man has a problem remembering his Granddaughter’s name. Darn that Alzheimer’s! But now he takes this pill and look! Now he can set the table or play checkers with his buddies!
Or maybe people think of Alzheimer’s as some vacant old lady drooling on herself abandoned in a corner of a nursing home.
I guess it can be those things, but it isn’t that way for me. Alzheimer’s is the horrible black cloud of forget that wraps itself around my Grandmother like a tight and constricting blanket. It covers her heart some days, or her mind or her eyes. It masks the real world and makes her paranoid or angry. It diminishes her senses and dulls her soul. And as much as I try to tug the blanket off of her I never will.
Flopsy goes the thursday
I’m having a hard time with GM today. It began early when she had some bathroom issues around 7:30am. Her bathroom issues (and forgive me if this is too graphic for some of you, but this is my life) are mostly a problem of lack of power or muscles to properly exit her number two waste. If I do not supervise every bathroom trip it can result in something of a nightmare of a mess- something that I will not elaborate on, but will say that what you are imagining is probably close. If I walk into the bathroom while the mess is happening or just after the mess GM feels caught and acts out in a disgusting rage. To prevent that I now must be super in tune to her getting up so that I can escort her. If I am with her we can work on her problems together. I have medical gloves and sterile wipes, but it is never easy or pleasant to be someones muscle in this way.
Usually I can get GM back to bed after a struggle in the bathroom. And usually she will rest or nap for another thirty minutes and effectively recharge her small body. But this morning she wanted to get up and get dressed but had almost no connectivity between her mind and her body. She was alert and almost communicative, but flopsy. In the past I would be able to really get in there and swiftly lift her and get her dressed, but now I am overly cautious, completely focused on not over exerting myself. Getting her dressed took forever. We had to use the wheelchair to move from her bedroom to the den. And even out in the den she couldn’t hold herself up properly.
Thankfully Mother was still home and I was able to get her to lift GM up and back into a better position in her recliner. The rest of the day was just sort of off. GM seemed like a rag doll and wasn’t able to talk much anymore. After a lunch of mashed potatoes that I needed to feed her (something that I have been doing for months now) she just sort of glazed over and drooled. Literally drooled.
I felt/feel helpless on these days. I yearn for a more powerful connection but her internal switchboard is not engaged at all. These are the days when she accepts me as help but is not aware of our familiar relationship. These are the days when she points to a photo of my Grandfather and tells me that it is her Daddy.
I am trying to be thankful for something. I am thankful that she is not in pain, that she is not upset or agitated. I am thankful that she allows me to help her, clean her, feed her. I am thankful to have this most special relationship with my Grandmother even if she does not know that is who she is today.
After lunch she had another brief nap and now I have her tucked back in to her recliner watching a wonderful show I recorded on PBS. Right now Pavarotti is singing and it is making me weep. So many memories of my youth are connected to listening to Opera with my Grandfather. If no one else was home we would turn it up to 11 and swell with each emotional aria. I can still hear my Grandfather exclaiming during each chorus, “Now everyone sing!”
And I feel a bit selfish for putting this show on. I am hoping that if it is stirring this reaction within my own heart and soul that maybe something will shift within GM. I miss her today.
My first Bridges Post is up!
I am so excited that my first post at Bridges is today. I selected this post because it shows the harsh realities of living with someone with Alzheimer’s. It can be brutal. Please take a moment to visit Bridges and if you have a first hand connection to Alzheimer’s I would love to hear it.
I am now actively hoping that GM has a good and calm and lucid day as she will be with me for the scan later this morning.
Bridge over troubled water…
Every time I see something about the awesome new site, Bridges, that song begins to play in my head. Bridges is a new Mel inspired site that is really taking off and I am thrilled to be a part of it as a contributing editor helping people understand what it is like to care for someone with Alzheimer’s. So much of our blogrolls focus on one or two things: infertility, parenting, and in some cases who is doing the parenting (one woman, two women, etc)
But trying to get knocked up, stay knocked up, raise a family, and all the variations in between (which includes the harsh reality of not getting knocked up, not staying knocked up and not knowing what it is like to raise a family) isn’t the total sum of our being. It certainly feels like it when that is what we are focusing on. But chances are if you were to run into your favorite middle school teacher today your opening sentence would not be about your cervical mucus. No. It would be about that great trip you took in the late 90’s, or that horrible accident that happened to someone you cared about, or that life changing illness that happened…
Bridges is a site that allows those of us that usually write about one or two things to show you what else is going on in our world. There are posts about mental illness, addiction, autism, body image, postpartum depression, adoption, cancer…The topics that we as a community are dealing with are vast and overwhelming. We are not just vaginas- we are whole women with whole lives and giant life hurdles.
Being able to contribute posts about Alzheimer’s Disease is very important to me. Before I began to be Grandmother’s care-giver I had a totally abstract view about what the disease was about. I honestly thought that it would be just a quieting of the mind and then the memories would be gone. What I didn’t realize is that it is a totally violent disease that is not quiet and certainly not subtle. It is literally a horrible thief that robs and pillages and steals and leaves painful messes.
I want to share as much as I can with you about my experiences with Alzheimer’s because the number of people that are diagnosed with this disease is rising and chances are someone in your family could succumb to it. Someone that right now can tell the most fantastic and wonderful stories will one day look at you with vacant and sad eyes and not be able to tell you what their most basic need is.
I have a post coming up in a few weeks on Bridges and in November I will be doing a lot of blogging about Alzheimer’s as it will be Alzheimer Disease Awareness Month. I would also like to hear from you guys about any experiences you have had with the disease. I want to be real and open about it. This is not the quaint shuffling Grandparent that is featured on the drug commercials where Grandpa forgets how to set the table, it is a horrific disruptor of families where Grandpa can’t even feed himself. The more we can help each other through the better. I know first hand, through all the love and support that I get from you guys, how amazing our community can be.
Please go expand your view of your blogroll and visit Bridges. Click around. Look at the contributing editors and see what they will be talking about. If there is a topic that you feel you can speak on let us know. We are building bridges from site to site and soon we will all be connected.
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Your Bridges assignment: 100 Words Project
Please write 100 words about September 11th. It can be from an older, previously published post, it can be something new, it can simply be a photograph. Submit your 100 words to Mel by August 31st. On September 11th we will be publishing your words on the Bridges site. It will be a sort of memory wall for our community. Read more details and how to submit here.
The Sound of Silence.
It has been an extremely long and hard week. I am pretty beat down and exhausted so I doubt this will be one of those pretty and eloquent posts.
Alzheimer’s is fucking hard. Even on a good day it is hard. On a bad day it is soul-sucking.
GM had a relatively “normal” Tuesday. She had no memory of spending all of Monday in the hospital, no memory of the things that brought us there, and no realization that she needed to take it easy. But I was actually happy that she was doing so well. I mean who wants to remember hours and hours and hours of hospital hell? So Tuesday was calm, maybe even mellow.
Wednesday things started to shift.
By Thursday it was bad.
And this is the stuff that is hard for me to write about. I mean who wants to document and put up for the world to see horrible things that their Grandmother did or said? Who wants to relive it as she struggles to find the right word that would convey just how awful and mean and tense things were. Not me. I just can’t.
Yesterday was just shit.
And I know that her violent mood shift was totally connected to the chaos that was her Monday. I know that when she acts this way that it is not personal (even when that is how it manifests).I know that it is just her mind trying to claim some sort of control over a body that is no longer always connected to the mind. I know that when things are at their worst she is absolutely not culpable. And I grapple with all of this as I try to not cry or retreat or talk back. I try to go emotionally limp and push the Granddaughter part of me away and just focus on being a good caregiver. But I kind of suck at that. I always cry.
I think it is especially hard for me right now because I am just one big blob of emotions. I fucking cry at everything. Even the idea of sad things makes me cry. So being in a situation that is actually 100% authentic, real-life sad just about destroys my foothold on sanity.
On top of care-taking during a rough week I also have that looming fear that will always, always, always follow around an infertile. Always. It is the fear that the really horrible stuff is right around the corner. I fear that the Snork was just some mind trick, that it is a twisted and belated April Fool’s. When I find myself doing things like dealing with my insurance (which is a very large post that may or may not be written for public consumption) or scheduling an appointment for for an OB I feel like someone will stand up and call me a liar. The fact that I have an OB appointment next Wednesday just blows my fucking mind.
When does the bliss come in? I think I am just still in shock about it all…
And as I deal with all of these conflicting emotions- the stuff from GM- the feeling like a fraud- the nonstop weeping and peeing- I find that I retreat. I tuck away and hide myself with like this blanket of shame. Even sharing all of this now makes me feel a bit raw and uncomfortable. Like I should just buck up and deal. But dealing, as I am finding out, is hard.
Difficult Days
Something that I haven’t been blogging about in depth is some of the difficult stuff GM has been going through lately. I won’t go into detail here, but her issue resulted in my rushing her to the hospital yesterday. Thankfully there is virtually a brand new Mayo Clinic Emergency Facility two blocks away and she was seen immediately.
GM becomes completely disoriented in a hospital. She is at times adorable and witty and then instantly screaming and confused. Mother and I were able to be with her for every exam and procedure and that was very helpful in keeping her calm.
Watching someone you love suffer with pain is one of the worst things ever. But when that someone has a memory disease it just seems cruel and so very unjust. Every 2 minutes she would repeat the awareness of hurting. It just makes me so incredibly upset to think about that right now.
We were able to get a diagnosis for two things that we can begin to treat at home. And thankfully we were discharged late last evening.
Every time GM has to go to the hospital we loose more of her. Sometimes she will sort of bounce back in a week or so, but usually the disorientation sets her back permanently. I am truly worried about who she will be when she wakes up this morning. I worry about how altered she will be, and how long she will stay that way.
I will be taking a small internet break for a few days so that I can focus on her 100%. Your thoughts and prayers are appreciated and desired.
Movie Day and then some
Yesterday was an interesting day with GM. She started the day not really knowing who I was. I came in to help her get dressed and she sent me away because her “lady” was going to help her. Um. Nice to be thought of as her lady, but it was weird to be asked to leave. I waited less than a minute and walked back in and she was happy to see me. Short term memory: sometimes she is your friend & sometimes not so much.
I got her dressed and out into her chair in the den and told her that I had a couple of movies for us to watch. She was SO excited. I poured her a nice sized bowl of chocolate lucky charms (her treat if it seems like her mobility is working well) and began the first movie of our double feature:Charlotte’s Web.
Now here is a little tidbit about moi. One of those gems that I really should save until that “6 crazy random things about you” meme floats back around again. I will pretty much watch any movie, but there are two things that skeeve me out. 1) long scenes in cars (this goes for tv shows as well. I am TERRIFIED of seeing a surprise car crash scene. I literally have to cover my eyes if people are in a car- even if it is a sitcom. You just never know when something bad might happen and I don’t like surprises.) And 2) Things that don’t talk in real life talking. This obviously does not mean muppets, puppets or cartoons. But some claymation has freaked me out and ALL animals, babies, or inanimate objects. There is a local commercial that is running now that features a red kia with a super-imposed human mouth on the bumper and I have to leave the room if I see it. It makes me ill.
So. That brings us to Charlotte’s Web. An entire movie with fucking talking animals. I loved, loved, loved the book and cartoon, but this version made me squeamish. & Charlotte was scary. Too scary. Shiver. GM loved it so I pretended it was an audio tape and read a magazine never daring to look up in fear that I would see a pig’s lips move in a way that it shouldn’t.
For lunch I began the 2nd movie, the movie that I was actually really excited to see- Monster’s Inc. Oh man did we love that movie. Charlie the dog jumped up in GM’s lap for a nap, but even he got into the action. GM loved any and every scene with the little girl, Boo. Every time Boo said kitty GM also said kitty. She loved the dramatic scene with the doors flying around on the tracks. It was just totally captivating for her in every way that I had hoped.
But here is the crazy part- aside from maybe a ten minute doze in the chair situation- GM didn’t nap all day yesterday. Not once. Her mind was open and active and she wanted to be engaged. When the movie was over and I clicked the tv from video to cable it happened to be on TLC. And guess who got totally sucked in to women in labor tv?
This happened a few years ago when GM was much more independent. She would watch shows in her room and they were so not the shows that I imagined she would like. Sometimes I would walk in and it was an Mtv show, other days it would be that show with the playboy girls, and then she discovered women in labor and totally became fascinated by it.
And so there we were yesterday watching back to back births and then that show about the first 72 hours or so of having a newborn home. GM just becomes so invested with anything that has a baby in it. It is something that I find equally sweet and sad.
And did I mention that she didn’t nap at all yesterday? I hope you know that if I sound complainy I am not complaining that GM was alert and lucid. I am just having a bit of a whine over how exhausting it was to keep up. I am lucky that I should have that to whine about.
The hardest part is that I always know that she is going to crash at the very end of the day. It will happen suddenly and there is usually no warning. But she will go from having a clearish conversation with you about ducks and then she will start slurring her words. And then the words won’t be there at all. And then she will look at you like you are the actual thief of her words. And then she will know, on some level, that she is not making any sense. It is then a race to get her pottied and undressed before her limbs become as floppy as her mind has.
You know just writing that I had this image that GM operates as her own puppeteer now. When she is feeling well she is able to make her body do and say fantastic things, and when she is not lucid she has to allow others to move for her. I just can’t imagine how horrible those days are for her.
Instead I am going to focus on how lovely a date she was for our movies yesterday.
And sometimes we cry
Oh GM & I can have some good days when there is a good day to be had. We seize the moments, we hold each other tight, and we swoon with mutual affection. Oh the good days are oh wonderful, oh so good. Lots of singing, lots of laughing, lots of silliness.
And sometimes we cry.
Sometimes we just don’t know who GM is and neither does she. These are the hardest moments, and I have written about them before.
Imagine having to convince someone that they are who they are. Daily. Imagine having to tell someone that they once had a husband, children, grandchildren. Imagine having to sum up parts of a person’s whole life swiftly before they crumble into a dark pool of emptiness.
GM is in a pattern of having wonderful mornings and nightmare afternoons. Usually the flip of the switch happens after a nap. It can be a short nap or a long nap, but naps are the enemies. But naps are also a necessity. And they will happen whether I want them to or not. Some days I do all that I can, go into overdrive on personality and charm, and try to keep her alert and awake just so that I can selfishly have the sweet woman that I have begun to love with me. Even then she will eventually fade into a nap.
The post nap GM is like the inside of an Easter bunny. She is just a shell. Empty and cold. I try to fill her up with memories that I think she will like. I tell her about her cousin or her Father and some days she is so eager to know. And sometimes we cry.
The way that my GM cries would break your heart. She caves into herself and puts her head into her small hands. Her delicate shoulders start to shake up and down and then the keening sounds being. The long vowel sounds. Sometimes she screams as she cries. She doesn’t understand what is happening. Why it is happening. Who she is. Who I am. Where she is. Her mind is like an empty dining room table in an unfamiliar house.
Years and years ago I remember watching the movie The Notebook. At the time of that first viewing there wasn’t much that resonated with me. In fact I actually remember thinking that it was one of the most overly sentimental movies I had ever seen. GM had not yet been diagnosed and my life was not the way it is now. But some afternoons, as we wade through sadness and emptiness, my mind thinks about the scenes of that movie where James Garner reads to Gena Rowlands the story of her life. It makes me wonder who would write my story and read it to me.
Right now Mother is tucking Grandmother into bed. Over the monitor I can hear GM crying in her room and apologizing for not knowing things. I can hear Mother tell GM the story of a particular summer in GM’s childhood as if it is a regular bedtime story. GM is quiet now, listening and interested in the adventures of little M. And sometimes she will chime in as if it is her version of Goodnight Moon. And sometimes she will cry.
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