“I am awake. I am…”

When I woke this morning, I was thinking about my last post and the Rabbit Hole that is Alzheimer’s. The weirdest thing was that I realized I am in the Rabbit Hole with my mom. Alzheimer’s drags everyone involved with their loved one on a regular/daily basis, down with them. You cannot help but go down the Hole, too.

And mom is just so lost. She says, “I am not confused. It is not that, really. I just feel lost.” And watching her, and trying to converse with her, I sometimes feel lost, too. And trying to balance the outside world and the life I was involved with, well, it sort of becomes too much. And I can see why caregivers become so isolated. The thought of trying to take this show on the road is almost just too overwhelming. In addition, the fallout the next day makes the effort not something we want to even attempt. Mom will complain that she is bored and life is so quiet. So I asked her what she would like to do, or where she would like to go. She said, “You know, I like it simple and quiet. I want to stay right here.” All within a minute, a complete turn around. And dealing with that unbalance and mental chaos all day every day, well, it takes its toll. Yesterday, I was so frazzled, I did not get dressed. I showered at 11:30pm, when the house was quiet, mom was confirmed asleep, and I could just let it out. I bawled in that shower. All alone, in the dark. And I mourned my mom. I mourned the life she once had. I mourned the happiness she once had. And then I mourned, selfishly, for me. For my life I did not realize I was giving up, to take this journey with my mom.

Today, as I put my feet on the floor, I was determined to be different. I was going to be the light and life in mom’s life. I was going to be her support, in a jolly, and joyous way. And as I sipped my coffee, I talked to myself. I encouraged myself. Then mom got up, wearing her thick sleeping socks with slip on sandals, her flannel pjs and robe, earrings and lipstick. And she was looking around, not knowing where she was. She greeted me very quietly today. She had her pills and coffee. Then she sprang from the couch (remarkable in itself) and pretty much dashed to the bathroom….where she started vomiting. Mom does not have stomach problems. Ever. Since living with us, this is the second time in the past year she has done this. I am thinking we need to take this show on the road today, and visit Urgent Care. It could be a UTI or who knows. At 88 and with late stage Alzheimer’s, this could be significant or not. It’s another one of those things that keeps us in this Rabbit Hole of disease. The moment-to-moment uncertainty. I cannot plan a thing in advance. Nothing is certain before 1-2pm every day – because that is when her daily fog starts to lift.

Each day the journey changes. Some days I cannot even find the top of the Rabbit Hole, to get myself out and to be looking down and helping from there. The concern for caregivers is that we become so enmeshed in caring for others, we forget ourselves. We forget our other family ties and those who depend on us. And sometimes we extend life lines, hoping someone will grab on and pull us out. For me, my husband is my lifeline. He is there for me to fall back on, because he is often in this with me and he gets it. Somewhat. We have been approved for a Personal Care Assistant and I am starting the interview process for that. We are waiting on our Respite Care approval, and that should come soon. Once we have someone in place, I will begin to pull away, to pull myself out of the Rabbit Hole, and be a helper and daughter, rather than her sole source of care. Today, I am waiting to find out if we take this act to the local Urgent Care, or if she will continue sleeping and being in her fog until 3pm. But I am aware of the tentativeness of all of it. Even my role. Alzheimer’s is the most horrid disease I can imagine. So to my fellow caregivers, hang on…it truly is a bumpy ride. And to those watching, toss a lifeline now and then!!

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“I’m late! I’m late! For a very important date!”

Well, today was a doozie. I think that I am becoming depressed as I watch my mother ‘s disintegration with Alzheimer’s. It is so hard to watch someone you love become a shadow of their former self. I am not of the school who says, “That’s not the person I once knew.” It is still my mom. Trust me, her sharp tongue is still with her and she often reminds me of the fact that she is the mother and I am the daughter. So I know she is still here. But her brain is just shooting marbles like some mad pinball master. And today, she was ringing bells all over the place.

Today mom was completely and totally absorbed in three, well four, things. She read, when she was awake, the Costco Catalog, a women’s magazine I got at the grocery store check out, and a memory book I gave to her several years ago. And it was over and over and over again. Each time, it was like she was seeing them for the first time. The fourth thing is time. She has no concept of time. Partially from Alzheimer’s and partially because she sleeps from her first cup of coffee around 7am until about 3pm, when the fog seems to lift. And then her day begins. The trouble is, the rest of us have been functioning this entire time and she is so lost. It is like she is scrambling to catch up. So she is constantly checking her watch. She spins the dial and does not push the stem all the way in, so the watch is invariably wrong. Sigh. I fixed it four times before 5 o’clock. Now mind you, she had either slept or been reading those three items since she got out of bed at 7am. This time thing started today at 3pm. So by five, I was ready to throw the watch out into the rain. So I did the next best thing. I set the right time and I super-glued the stem. Don’t judge.

That watch is the exact watch my mom has. Well, you know, God loves to watch us (no pun intended) make fools of ourselves. I carefully super-glued the stem and cleaned off the extra glue, blowing on it the entire time. I started a pot of hot water for my pasta and surreptitiously slipped it into my pocket. I quietly walked to her bedroom, to place the watch on her dresser. Yeah. It would not come out. Glued to my pocket. See? God will get ya! LOL. (Either that or Loki was cracking up). Anyway, I then had to remove the pocket gunk from the watch, after I ripped it out of my pocket, using nail polish remover. All the super-glue came off. I gave up and left her watch in her room. She never saw any of it, totally absorbed with those magazines/books. I have to figure a way around this time thing, because it makes me absolutely crazy. The hard part is she never believes me when I tell her the time, and that her watch is new and works just fine. She is always spinning those hands and walking over to the nearest clock to check for herself.

People in recent eras have suggested that Lewis Carroll was high when he wrote the Alice stories. But when you read his autobiography, it says he had a form of epilepsy. He is known to have said when he had a seizure, that it would take a long time for him to feel like himself again. One of the things about the Alice is stories is that objects and their sizes are all skewed, which is typical of the symptomology of many forms of epilepsy. One of the themes in the Alice books are all about how skewed time was. Which is the reality in mom’s world right now. Time is completely skewed. In the artistic renderings which Lewis himself drew, and which illustrators also drew, are oddly sized time pieces, and a lot of them, in odd places. Well, as mom has sunk further into her rabbit hole, I just thought the images of these absurd time pieces was rather perfect. The White Rabbit gives us the quote we often use, “I’m late! I’m late! For a very important date!” And mom is constantly worried these days about being late for the particular “seating” for a meal. At her old retirement home, there were “seatings” you would sign up for. The different “seatings” were at different times, and also in one of their several dining venues. So she is always thinking she is late, and is walking around the house, checking the time and fussing about being late, and not “getting a good table.” “I’m late! I’m late! For a very important date!”

I don’t think Carroll used drugs. But I do think, through the Alice stories, he gives us insight into some mental illnesses. And it gives me pause when I watch my mom. Tonight she wanted to give me back my Costco Catalog and “the nice magazine you brought to me when you came to visit today” (Yes; she thinks I am visiting her at her apartment and we had been sitting in the public areas all day). But she was determined to take the memory book I made for her back to her apartment/bedroom. I had to explain to her that she lived with me, this was my living room couch, and her book was safe there and would be there when she woke up, and that her bedroom was just down the hallway. She said, “Well, I don’t want just anyone looking at this. It is my book and it is private.” I should have let it go, but I explained it was just the two of us and since I had made the book for her, I knew what was inside and would not look at it. I laid it carefully on top of the catalog and magazine, and patted it gently. She seemed mollified and trotted off to get ready for bed.

Mom was so off her schedule today, that I made us a pot of tea, using my Brown Betty tea pot. It is similar to the white tea pot at the Mad Hatter’s Tea Party above. I thought of this scene when giving mom her tea. All those clocks. Ha-Ha. She drank a sip and was once again diving into the Costco Catalog, tea forgotten. But I sat and watched. She was so enervated and alive, looking at their summer tables and vitamins. I am not sure what she sees, but evidently it is enough for her mind to grasp for that moment. Because she moved between those three things – the catalog, magazine, and memory book – the entire day. She did not even watch Steve Harvey today! That is huge! And I realized her world is contracting. So much.

We were invited to go to the State Fair tomorrow. The very thought of it gave me chills. I could not imagine my mom navigating the sights, sounds, people, and weather. It would be sensory overload and would be a short visit. (In addition, because it is Labor Day, all the schools are out tomorrow and kids get into the Fair for free. No thanks! Way too many people). So I did what every daughter in my position would do, I got the kids to go get us Cold Stone Ice Cream. And just put this day to bed. Sigh.

 

Downstairs, restaurants, and teriyaki turkey breast…

Things have been a little weird around here. My mom thinks she is living in San Diego (in her apartment) in the senior living center where she lived, prior to moving in with us. She moved in here last August; all the way to Alaska from Southern California. The other night, I prepared a lovely meal of teriyaki turkey breast, some scalloped potatoes, and steamed spinach. While I was cooking, mom toddled off somewhere to the back of the house. I stopped preparing dinner to find out where she had gotten off to, and what she was up to. (It truly is the same as having toddlers…if they are quiet and not in the same room, you need to run and find them!!) As I approached her in her room, she kept saying we had to get downstairs to the restaurant before all the tables were taken. She was carrying her wallet. I asked her what it was for. She informed me she was paying for our dinner downstairs. I asked her why we needed to go to a restaurant, and did she not like my cooking? Her response was that she supposed she could eat mine, but that we needed a restaurant downstairs. We had been making our way back out to the living room, but then she huffed off to her “apartment” with her wallet, and with two pairs of shoes in her hands, angry she was not going “downstairs to the restaurant” to have dinner.

The thing about Alzheimer’s is that you just never know how those pistons are going to fire. It is the best analogy I have heard for the degenerate aspect of Alzheimer’s. It creeps along the nervous system, destroying as it goes. And if we think of our brains like engines, the parts that are destroyed are what keep the ending running – those pistons. Flames are struck and the piston is raised up, the engine is able to turn the driveshaft, and the vehicle moves down the road. (Public Service Reminder: this is from a woman who can barely find which side of the car the gas tank is on!). With Alzheimer’s those sparks are sometimes not strong, they are non-existent, or they are hit and miss. There is no normal pattern. The engine sputters, the car stalls, and if the corrosion continues, the car stops running. Our brains are like badly corroded engines…the muck and grime are stuck to our nerves and the signals cannot get through to the parts of the brain that help us function. Eventually signals stop coming through altogether, and our bodies can no longer function. And that is why a doctor can say someone dies from Alzheimer’s. Other dementing illnesses may not cause death, but they are disruptive, to be sure. A dementia patient may forget a word, or forget to be somewhere at a certain time. An Alzheimer’s patient can look at a fork and not know what it is, or look at a family member and not know them. Quite often they cannot describe what they are thinking and their processes become muddled. You may see the stereotypical representation of older people, sitting in their wheelchairs in a rest home hallway (aka – skilled nursing facility) drooling and muttering to themselves. More than likely, that is an Alzheimer’s patient. And as this hideous disease moves along the nervous system, life becomes complicated and will eventually end, when the disease has run its course.

Of all the dementing illnesses (and there are more than are shown above; these are the most common) Alzheimer’s is the most common. It is becoming an epidemic in our elderly. And we, as a culture, have got to start paying more attention. We have to find a cure.

Mom had an episode wherein she was completely separated from the reality around her. It was confusing her, because in her mind’s eye, she was in San Diego on the 3rd floor in her 5-story, very nice, retirement community. She could not see Alaska in all its beauty, as she looked out our window. She was seeing palm trees being swayed by ocean breezes and the lovely fountain in the roundabout entry of their parking lot, which she see from her living room. She kept trying to explain how we had to “go down for dinner.” I gently encouraged her to lay her things down on her bed and to come to dinner with me. She came out of her bedroom (thinking it was her apartment) grumbling about how we were not going to get a good table and wanting to pay for our dinner. I eased her into the couch and brought her the dinner I made for her. She ate and thanked me, saying it was tasty. She covered her plate to hide the fact that she had not eaten all of her food (and I give her smaller portions these days). She did not make sense, as she chatted to my husband and myself. She was very quiet most of the evening. It was a long, hard day.

A few days have passed. A weekend, in fact. My hubby had 4 days in a row at home, all day, puttering in our yard (okay, he worked hard) and a day golfing. Our son, who has been gone over the past month fighting fires in the “lower 48,” surprised us by coming home. And he promptly left again today for his normal fire house shift. Mom is so confused. A houseful, and now it is just the two of us. She had an appointment with the foot clinic today and we barely made it. (Another blog post for another time). So while we were out and about (so very rare for mom these days) I took her for a haircut. She is not happy but I am! Short is much easier for me to deal with because she rarely does her hair. She thinks she does, but she does not. And today, well, today we had double eyebrows on both eyes. She is just so confused. She has been walking around the house, looking for her apartment key. She has no idea how she will get into her apartment. I have explained, at least 3 times this afternoon, that she lives with me. During the most recent explanation she replied, “Well I might, but my apartment will be locked.” As she wandered the house, I made us grilled cheese sandwiches, which are her favorite. She came to the kitchen so lost; looking around. I explained I was making her favorite sandwich and she said, “Yes; I like toast. Some people don’t, but I always have liked toast.” I explained I was grilling her a cheese sandwich. She said she guessed she could have that. LOL. And then I dropped everything and walked up to her and just hugged her. I told her I knew she was confused and lost and I was trying to help. She admitted she did not know where she was or what she was doing here. I promised her I would be here to help her get through this and her reply was that it was the only thing she could count on – me. Sigh. No pressure. LOL.

As we peer down into the rabbit hole known as Alzheimer’s, I take deep breaths. I try and center myself. Mom sees her doctor next week and she has changed so much. She has been going down, deeper and deeper into Alzheimer’s and it is not slowing down. If anything, it is picking up the pace. All I can share is that each moment is so very different. All these precious moments require us to be fully in that moment, because each one is so vastly different from the last one. Those pistons change their firing pattern every single second of every day. My mom is so fragile and vulnerable. She makes me madder than any other person on earth, because she knows my soft spots and my weaknesses. She knows which buttons to push without even thinking about it. And me, I tend to dive back into our old patterns. But now that she is tanking so quickly, she is softening. She is scared. And she is fragile. And that is where I come in. I am here to hold her as she falls further down that rabbit hole. Yeah; it is scary.

 

Hügelkultur and Fireweed, baby scents and puppy breath…

 

The seasons are changing. And as much as we argue about what the portends are and what they are saying, there is a feeling in the air that summer is pretty much over. Today was the first day of school for most of the state (some districts actually started last week). We have had overnight lows in the low 50s. The photo above is of the “Fireweed” plant, native to Alaska. The Native-oral-tradition about it is that once the blooms reach the top, summer is over and the first snow is less than 6 weeks away. Well, that fireweed is in my yard. (I love learning all these wonderful native traditions!! Brings out the Anthropologist in me!!). And our birch trees have leaves that are turning yellow. The hanging baskets are all dead or dying. The potted flowers are sagging. Well, except for my Dahlias, which still have unopened blossoms!! There is a thick fog on the ground and a steady drizzle. Temps are in the mid-50s with heavier rain on the way. Sun? Distant memory.

My newest Dahlia to open is the one above. The purple is stunning in person. And against the dark of the asphalt driveway and green of the grass makes it even more stunning. But it is fleeting. There are no more plants or flowers at the big box stores. Snow blowers are on sale. Boots and gloves back out at the retail shops. Back to school everything is everywhere! And for some reason I feel like I missed it. You know, the bar-b-ques, trips to the lake, or fishing. We never went fishing once. Poor hubby. We have had my mom to care for and our free time has been greatly reduced. And, our backyard took precedence over everything else….thanks to our huge sinkhole! LOL!

The outlined area (using already felled trees) is the border of the sinkhole. Massive. We are trying this method called “Hügelkultur” which is a method where you use decaying wood and leaves, your grass cuttings, and other decomposing plant matter to build raised mounds or beds. We are going to fill this huge area with our downed trees and will mound it, and plant it with native trees and bushes, and lots and lots of flowers. It is a method to re-use what you have, and to enrich the soil and help efficiently use your water resources. We have lots of trees and brush to fill it with, and it will eventually stop sinking! LOL! It’s a great idea and we are enthusiastically embracing it. It does, however, involve dead and decaying things. Just like the end of summer.

The world works in seasons. Everything has its time in the sun, and when its time is done, it fades away. Life fades away. And I feel like I am surrounded by the dying. Watching mom and our 12-year-old dog snore the morning away…watching the rain fall and the leaves actually fall on the ground, makes me sad.

I belong to lots of web sites and pages on Facebook. Every once in awhile, I purge them. I went through my Kindle this weekend and I actually deleted more than 400 books. I mean, who in their right minds needs more than 600 books on their Kindle? I am a voracious reader, and I only deleted the books I have read. Because with so many to go through, it was hard to tell which ones were read and which ones were just downloaded, waiting to be read. But I also deleted some in genres I know are not ones I need to fill my brain with. I mean, I do believe you are what you read. You know? So fill the noggin with good stuff, and good stuff is what you think about. I love this book entitled, “Our Thoughts Determine Our Lives” and it really does speak to me that way. (Written by Elder Thaddeus). Because what we have around us influences everything about us. Where we go, who we hang out with, what fills our days and nights….we become the world we allow around us. Right now, the world is easing into sleep. The long night of winter. The snow will blanket even the ugliest trash heap with pure white. It makes things seem okay, as we wait for the first sprouts of spring. And the cycle starts all over again.

And living in a northern climate where the seasons are so separate and distinct, the passage of time becomes so very real. The days don’t run together so much because one day we are in flip-flops and glorious sunshine, and the next we are turning on our heaters and watching a storm barrel its way through. It really makes you stop in your tracks and re-evaluate. And I need to inject life in our home. We need joy and excitement and an excitement for what is to come. And some of the pages I belong to on Facebook are English Springer Spaniel pages. We have had Springers for more than 20 years now. We love the breed. I took one of those dog tests on Facebook and it says my dog should be a Great Dane. LOL. We had Danes growing up; been there and done that. A long time ago, I took a quiz adopted by the AKC to determine your best breed, and it was a Springer. So I am sticking to that. In addition, we have a wonderful Springer named Poca. She was a rescue through ESRA (English Springer Rescue America) when she was 5 and she is now 12. We love her to bits! We are members of ESRA, and are the AK Reps for them, as well as a sanctioned foster home for Springers. Like I said, love the breed.

This is Poca. She is really Andrew’s dog. Even has a spot on his bed! She is the heart of our home. And I have realized that with both Poca and my mom aging (not to mention me and my husband) I think we need a Springer puppy in our lives. Of course, my husband is being really, really reluctant to embrace the idea of a busy little puppy in the house, but I think I am wearing him down (hint-hint, since I know he reads this to humor me) and he is starting to warm to the idea. So I am perusing breeders in CA to visit when we are down there later this fall for the birth of our granddaughter, Iris Sophia. I know holding a baby and smelling all those baby smells and hearing all those baby sounds will boost my spirit. In addition to that, we will be playing with our other 3 granddaughters, and they will lighten our spirits, too. I am so looking forward to my grandma time. And I think that returning to Alaska, carrying a little puppy, would be the best thing. What do you think??? I am going to post photos of various puppies, because it makes me happy.

Now who could deny opening your home to one of these adorable puppies??? Injecting new life into our home???? I am thinking, “YES”!!!! Ha-Ha-Ha!! The smell of puppy breath, their joy at discovering life, the fun and laughter associated with new puppies and new homes. Their cute little whimpers and how they trip over their own feet! I love it all. (Okay; potty training not so much – I am realistic). I think it is like injecting life into decaying things, like the Hügelkultur method of using the decay around you to grow new life. Yep; I have puppy fever and I won’t lie. I think it is a real thing!

 

 

Christmas in August

When my mom arrived in Alaska last September, she came with just a little money, her suitcases (there were 9 of them!!) and her smile. But she had no assets. Which means she qualifies for assistance. She is a Medicare/Medicaid recipient. There are so many people out there calling for a reduction in the money spent by these programs, because there has been so much fraud, waste, and abuse. I totally get that, I really do. I worked in a welfare office and I understand how government payments work, how benefits are assessed, and how the application process works. I understand how cumbersome and ungainly governmental application processes can meander on, seemingly for months – I managed them through our clerical workers, having the approval/denial stamp in my hand. I saw so much abuse, uncovered countless cases of welfare fraud, and was so frustrated by the entire system, that I eventually quit working for the welfare department. So I came to the application process with our local Medicare/Medicaid offices, and the amazing advocates who work for our seniors and disabled citizens, with eyes wide open.

My mom is sinking ever more quickly into her rabbit hole of Alzheimer’s. She believes she is still the quick-thinking, very competent woman she has always been. But there is very little mom can actually do for herself. She can dress, but it is a long, long process. She can no longer discern color very well, and so choosing matching clothing is arduous for her. It exhausts her, so she prefers to just stay in her pjs all day. Mom is also not as steady on her feet, and seems to tip over easily, making dressing difficult. She has also started to shuffle her feet when she walks, and shoes are such an issue for us. (Thankfully I got rid of her heels and peep toes months ago). Mom no longer remembers to use soap or shampoo or toothpaste. She thinks getting wet means clean. She can remember her eyebrows! Which tickles me to no end. (Yesterday she had two on her right eyebrow! When she was trying to be serious, it was difficult not to giggle). She cannot cook. I asked her last night what dressing she wanted on the salads I had made for the two of us. She had no idea what the words meant, looking at me very confusedly, saying, “Just put one of them on there. I don’t care. I’ve been eating salads since long before you were born.” Not sure what that last statement had to do with anything, but I am learning it means she is lashing out because she is confused, it angers her, and she cannot verbalize it. Like I said, Alzheimer’s is a rabbit hole.

Part of the process of caregiving is, quite honestly, finding some help. Caring for an elderly family member with any of the dementing illnesses is probably the most stressful thing you will ever do. There is so much more going on than just caregiving. You enter this disease with your loved one; it is like you are both diagnosed. In my case, this is my mom. She and I hadn’t lived together since I was 21. And that, my friends, is 40 years (okay, a little more this year! LOL!). A lot of water under the bridge. So not only is learning to live with my mom again rough, I also have family members adapting in the same house, too. And to top it off, mom has end-stage Alzheimer’s – that in and of itself is difficult. Now add the family dynamics at play. And some days, if I get dressed and everyone is fed, we have had a good day. Some days, meals are on the fly and I am still in my jammies, having followed the journey of my mom all day long. There are days when, if she cannot see me every minute, she goes into full panic mode. Last night, as I was helping her dress for bed, she commented about wanting to go to the beach or some place she was familiar with from years ago. (During the afternoon, she spoke about me going with her to her cousin’s farm in New Zealand. I have never been to NZ). And when I told her she lived in Alaska, she asked me where that was. I cringed inside, and told her it was a place where she could wear flannel pjs all year round, and still have her electric blanket set as high as it can go, in August. And as I turned out her light and shut the door, I barely made it to my own bed, completely exhausted. Mom had been so cranky all afternoon, treating me pretty poorly. But I knew it was fall out from our afternoon meeting, where we were putting together a “plan of care” for her. And she was not happy about it.

We applied for all the programs we could get. Some we did not get. Some we did. Some ran out before we could fully use them. But one thing I became aware of, is that our government has a lot available for our seniors and our disabled. We just need to plug into it. I completely and fiercely believe that those who are entitled to assistance should not be denied the assistance. Mom has paid into the system for the past 65 years. And I think she is entitled to the help, now that she really needs it. I also just as fiercely believe those who abuse the system should be punished, leaving more for those who qualify and need it. I am not justifying, just explaining. Mom qualifies for assistance in the home and I am beyond thrilled. I feel blessed. I am exhausted. Mentally, emotionally, and physically. I am finally getting some help. Family helps, don’t get me wrong, but even when they help, no one is getting a break. Mom does not remember we had breakfast today. She does not know where she is, what day it is, or what she is looking at. I put on programs thinking she will like them, and she promptly falls asleep. She does not respond to me when we are trying to accomplish daily tasks, and will put on her mom hat when I am trying to cajole her into bathing or dressing or toileting. But she shows off for strangers. She proved that the day we had her State assessment. She literally jumped onto her bed and posed in a very provocative way, to prove she was able. Most nights she requires my assistance to get herself into bed. Ha-Ha. She is quite the social person! Her physicality is strong, but she is very low functioning, cognitively. (She pretty much failed the cognitive portion of her State assessment). And so we planned for her care yesterday. And she fought us. She does not want a stranger around her. She was pissed off the entire day. But, we all need the assistance. I need the assistance. My family needs a break; my family needs me! My friends miss me. I miss me. And I think this will help energize mom in ways she does not realize she needs. One of the things we are scheduling is the “Memory Cafe.” It is a place she can go where she can hear music she knows, and talk to people her age. She previously said she doesn’t want to be with old people, but lately she has said our life is so quiet at home and that she would like to get out more and talk to people her age. We are hopeful the Memory Cafe will help. She will be able to have her caregiver (which will no longer be me) take her for mani/pedis or haircuts; out to lunch and shopping; to senior center programs and other activities she may desire to be a part of.

This journey is fraught with tension and fear, and daily doses of frustration. And now, with this much needed assistance coming our way, some of that frustration will ease off for me. There will always be fear. Mom had a rough day yesterday and she was exhausted. The fear of change is hovering over her and I think she knows change is coming, and so she is tense and rather testy. And underneath all her gruffness, of which I am fully aware, is an old woman afraid of things she does not understand. She could not follow our conversation at the table during our Plan of Care meeting, and even though the wonderful advocates who fight hard for mom tried to include her, she sort of dug in her heels and said she didn’t want it. Thank goodness I was counseled to put things in place earlier, so the final decision for her care is mine. But I really believe this is for her best. And I know it is for my best. And I am praying she will adapt and be happy. She will get someone dedicated to her care alone. And she will get out into the community. And we will enhance her assistance as she falls deeper into this ugly, ugly disease. Having this plan in place allows for a further dive into Alzheimer’s. The program is encompassing and very full. There has been thought put into caring for our disabled and elderly.  And I am ready for mom’s life to be made better through the assistance she will receive. We all feel surprised and excited at how truly full this program is, and blessed mom was approved. So, for me and the family, it truly is like Christmas in August!! Maybe I will make cookies….

 

“My bearings are rusted.”

Oh mom. With a full heart, I sit here and watch you as you sleep. You seem to sleep most of the day away. And you will awaken, and get your bearings. You always check your watch. You don’t think it is working properly because the day sneaks away, as you sleep. Most of your waking hours, you seem so lost. You have spent so much time being angry, and lashing out. Maybe it is because you knew this was coming. That you would enter this stage of a disease that steals you from me, one heartbeat at a time.

I realized our days of shopping, getting coffee and a snack, laughing and being grown women together are over. I wasn’t quite ready. I thought there was a lot more time. I don’t mind caring for you. It is my way of thanking you for the years you cared for me. All the times I was throwing up and you would stroke my forehead, speaking nonsensical mom-isms to me, giving me comfort. The many nights you spent caring for me over fevers and infections – there were so many years dealing with all my sinus issues until we finally, surgically, dealt with them. So many hospital stays and worries over surgeries. You never left my side. You were a difficult mom to grow up with, because you never really were the cuddly, climb-on-your-lap, type of mom. You were not really domestically inclined. But you loved your kids with all you were.

This past weekend, you were only awake for a little more than 4 hours in a day. And you are so confused. You keep thinking when you wake up that it is morning. You sigh a lot. Your shoulders hurt. The Icy Hot is right next to you, but you just cannot see it for some reason. And as you look at me, you smile. And it warms my heart. And it just kills me, too. Because some of the times you do look at me, you don’t see me. I’m not sure who you think you are looking at, but I know in my heart it is not me.

So often you mention your grandparents. You spend most of your days as a little girl, I think. We were watching this movie and you turned to me and said, “When I was a kid, we had a motorcycle.” There were no motorcycles in the movie. There was nothing remotely connected to motorcycles, but it was important for you to share. On another occasion, you were laughing during a particularly gruesome part in a Bourne movie. And I know it was just because you had woken and were still getting your bearings. I even mentioned it to you, as you tried to stand and were all wobbly. You said, “I think my bearings are rusted.” Yeah; rusted. Unfortunately, the rusting is taking place in your brain and I really hurt inside that I cannot help you. I can assist you, but I cannot make this better or make it go away.

Each time we venture into public, I watch you struggle. Today as we walked the Target aisles, you were walking sort of sideways. You were having a hard time maneuvering through the aisles and there was just too much to take in. Too much visual, emotional, and auditory stimulation. We came home and you have had a hard time staying awake. It is like our world is contracting as this disease takes more and more of you away from me. And I can’t stop it.

Alzheimer’s steals those we love from us, one brain cell at a time. It is relentless and non-discriminatory – it chooses whomever it wants. There are all sorts of theories about prevention, but there is no cure. No cure in time for my mom. Hopefully, by the time my kids are elders, there will be no Alzheimer’s. Because I do not want to fade away in front of my children the way my mom is fading in front of me. I understand now, why so many people say, “I can’t be around her (him) because I want to remember them the way they were.” And one of the saddest parts about that statement, is because you stay away, you are no longer in their minds or memories. And it is lose-lose, all the way around.

Tonight my mom told me again that I am her best friend. She hugged my neck. When she was forgetful about what we were discussing, I told her it was okay and that she did not need to fake a memory she did not have. I told her that is what she has me for. Her reply? “Oh my darling daughter, I need you for far more than memories. You are my love and I am so blessed you are my daughter. I love you.” And that makes every ugly moment worth it.

 

August 2017

 

 

“Here I am, Lord. Is it I Lord ?”

Alzheimer’s is such a weird journey. It is so convoluted and each person’s experience is so very different. I am involved with several groups and I see photos and read comments from family members who care for their loved ones. Some have them in special facilities, others have them at home with them, and still others are trying to help from afar. In any of these scenarios, the experience is pretty much a unique one. But the thread of Alzheimer’s runs through them all. I keep looking for markers and “points of no return” with mom. And when I see them, I inwardly cringe and outwardly square my shoulders and jump back into the ring to continue to fight this Alzheimer’s thing.

I like growing flowers. I am learning so much about which ones grow in our northern climate, and which ones over-winter well. And then there are those that the box-stores sell that most of us who are gardening laugh at, because they will not last up here. Spring and summers are capricious. Some days are hot and some days the winds howl and the rains pour down. Most box store plants don’t make it. The ones I have planted bring me such peace. The colors are vibrant and the plants are hearty. And I usually just sigh and smile when a new flower opens. It is pretty addicting. And it is pretty much the opposite of watching a loved one lose their battle with Alzheimer’s.

This past month we have seen incredible changes in my mom. My mom is no longer on any of her previous medications, other than her anti-depressant. She gets Tylenol several times throughout the day, to help with her arthritis pain (along with liberal use of Icy Hot on specific joints), and a daily multi-vitamin. That is it. No long list of medications. Her doctor feels that exposing her body and internal organs to the chemicals in her medications was not worth any of their benefits, and that they were not doing much to increase her longevity or quality of life.

This past week, mom was evaluated for her Medicaid Waiver. I was so stressed for her, that I spent the day prior doing power cleaning. The house was spotless. LOL. And I informed mom the night before that this team was coming, and it just pissed her off no end. She did not understand that getting the Waiver is a good thing…for all of us. The next morning, the morning of the interview, mom could care less. It was hard to get her moving and she was being so nasty to me. Then the team starts arriving and mom comes out all smiling and hugging and “It’s so good to see you again. I have missed you” to people she has never met before, trying to fake her way through things. LOL. She really put on a show. Being all independent and capable. I was so worried she was fooling them. And I was quietly praying the entire 2 hours they were here. Afterwards, the people who are part of our support team went outside and chatted with the assessor and then came back inside. (Mom was watching TV, oblivious to the entire process by this point). They told me that the assessor saw through mom’s posing and pretense, and that we should be getting all the assistance she is needing. I just stood there and cried. Okay, I held it together pretty well, although I did get a supportive hug from one of our team, but I fell apart after everyone had left (I went into my closet, sadly, to hide from mom and be able to cry and have her not hear me). I am strong on the outside and everyone tells me what a great job I am doing, but on the inside I am crumbling. My mom is dying. In front of me. And she is not going quietly or simply. She is fighting for every moment. And I am so very tired. Emotionally tired, and some days, physically beat up from all she puts me through on a daily basis. Sigh.

One of the things that a team member told me was that Alzheimer’s is a degenerative disease (which we all realize and know). However, what we see, and experience, with our loved one is just a part of the effects this disease has on people. If we see a sharp decline in their cognitive functions, we need to realize their bodies are declining on the inside, as well. The decline is in common functions like breathing, as well as walking and talking, abilities to eat and, to even swallow. Alzheimer’s disease is a degenerative brain disease, killing brain cells as it progresses. And you do not recover from it. Once dead, brain cells do not regenerate. Ever. Eventually the cells that control the heart, the lungs, and the organs, also fail. And now that her cognitive decline is speeding up, other things are starting to fail – her strength is poor, and her sense of balance is off. She actually fell onto the lap of my son’s girlfriend the other night, while trying to stand up from the couch. Some days she walks into walls, missing the corners of the hallway. She gets lost going to the bathroom, walking into the mud room or laundry room, mistaking it for the bathroom. Some meals I serve, she just cannot eat and will hide it from me, saying it was so tasty. She doesn’t realize that I wash all the dishes and I see what she covers up. LOL. She is preferring things like milkshakes over most other foods. So we are changing meal plans to accommodate her decreasing ability to consume foods.

On the other side of this, I think I don’t have it that bad. LOL. Strangely enough. I see articles and photos of people struggling with Alzheimer’s who cannot walk on their own, breathe without oxygen, or who cannot get out of bed. Mom still puts on her earrings and her White Shoulders perfume, along with lipstick, before she says good morning to us. She can barely see her watch and is constantly thinking it is wrong, because she sleeps for hours and hours during the day and has no idea where the day has gone. I have to scrub the bathroom more than once daily (my hands are baby soft from all the scrubbing) because she has no concept of the mess she is making, but it is still not as bad as some have it. Mom looks good; she is always concerned with what she wears and works so hard to match colors she can no longer recognize. She worries about looking good over almost everything else. And to the point that she spends hours upon hours (I am not exaggerating) putting on her make up, especially those dang eyebrows (which she now draws on her forehead, thinking since her eyebrows are white and sparse, she can put them where she thinks they should go. I am not making this up. She told me this herself!!). She is present and trying. The sad part is that she has no idea how she is presenting herself, and I know if she did not have this disease, she would be mortified.

And now we are preparing for her inevitable end. And I keep thinking, “It’s not that bad. She is still walking around, talking, eating. Really? Are they sure?” And then I really look and the decline is so viewable. She is not making sense of things. She is disjointed and her conversations nonsensical. She is comfortable sleeping in her jammies all day on the couch. She has no urges to get off that couch, or out of her particular space on it! I cracked up, when she decided to get dressed for dinner the other day, as I was plating the food and setting it down. I had to go find her and tell her dinner was ready. She was so upset she was still in PJs but then when I told her it was just the three of us (my hubby, mom, and me) she relaxed with, “Well, so long as no one is dropping by.” It was after 6pm. LOL.

And as she bangs into the wall, or wears more of her food than she eats, or laughs at horrible photos of earthquakes in Indonesia, I realize that I am here. My home has become a nursing home and mission field, all combined into caring for my mom. I am here for her, helping her through these last stages. I am blessed to have my mom trust me to be there for her. She still hugs my neck at night and tells me she could not do this without me, and then says, “God bless you.” And most nights, it makes me smile, and occasionally brings me to tears. Because one night very soon, it will be the last time she ever does that.

 

Here I am Lord by Dan Schutte

I, the Lord of sea and sky,
I have heard My people cry.
All who dwell in dark and sin,
My hand will save.
I who made the stars of night,
I will make their darkness bright.
Who will bear My light to them?
Whom shall I send?

Here I am Lord,
Is it I Lord?
I have heard You calling in the night.
I will go Lord, if You lead me.
I will hold Your people in my heart.

I, the Lord of snow and rain,
I have born my peoples pain.
I have wept for love of them,
They turn away.
I will break their hearts of stone,
Give them hearts for love alone.
I will speak My word to them,
Whom shall I send?

Here I am Lord, Is it I Lord?
I have heard You calling in the night.
I will go Lord, if You lead me.
I will hold Your people in my heart.

I, the Lord of wind and flame,
I will tend the poor and lame.
I will set a feast for them,
My hand will save.
Finest bread I will provide,
Till their hearts be satisfied.
I will give My life to them,
Whom shall I send?

Here I am Lord, Is it I Lord?
I have heard You calling in the night.
I will go Lord, if You lead me.
I will hold Your people in my heart.