“Let not your heart be troubled…”

The climate these days is so contentious. I am having a hard time finding balance. It is like everywhere you turn, someone is angry with someone else, or something else. And I am clinging to sanity as much as I can. I know others who are in my same situation. Others who have had it worse. A friend I met through a group I belong to, suddenly lost her husband last night to cancer. I mean, it was fast. And she is reeling. One of my dear friends has a mom who is the same age, or even older than my mom by a year or two, who fell yesterday. She is now fighting for her very life. And when I think of that, I don’t have it so bad. 

Today, as most of the world is doing, I am searching for peace. For calm. For quiet. For order. For faith and sanity, in amongst the chaos and anger. And I sat and watched mom totally snooze through the Senate hearings today. I was talking back to the screen. LOL. And then I realized, “How can I affect this?” I can’t. Not one bit. Oh I can tweet or post or what-have-you, but I cannot change what will happen in Washington, DC today. The only way I can affect the national government is to vote this November. It is the only way I can affect our state and local governments and assure things are run in a constitutional, legal, way. I can send letters to my legislators, and I can make my thoughts known. And I do all those things, and I plan to vote (EVERY VOTE IS IMPORTANT IN EVERY ELECTION. STOP BEING A COUCH POTATO!! Or assuming someone else will vote and/or take care of it. It is our responsibility to ensure our country, and our world, is a functional and safe place for our children and our grandchildren). But today, today I need to just step back and turn it off. So now, we are watching cooking! Ha-Ha! There is even controversy in what you choose to eat!!! How would I know it would all be about Gluten-free cooking???? And still, mom snoozes. And so I go to my fall-back (mom woke up) and turn on the Game Show Network! Wheel of Fortune! Yay! LOL!

I may even find an iPhone case like the one above, to remind myself to search continually in the world for this. And it is funny, because as I have gotten older, I have found quiet and solitude a pleasant way to live. I have friends I gab with, but I have no need to gab…until I do. LOL. And one of the most epic ways I have discovered to find peace and serenity, is to be quiet. When dealing with my mom, no response or a quiet one, work wonders. There was an article recently about Alzheimer’s and Dementia patients and how they are struggling for sense in their world, which has turned upside down. How they cannot make sense of using a toothbrush, let alone Senate Judicial Hearings. And if I refuse to follow pathways we somehow developed when I was a child, but insist on the pathway of peace and harmony, life seems better. I cannot teach my mom how to make her toothbrush work. Yesterday I walked into her bathroom and saw that she had put her body cleansing spray cap on her toothbrush head (it is an electric brush and sits on a charger) to “keep it clean,” she informed me. And that she had retrieved a second toothbrush from the cupboard below, encased in its travel case, and laid it amongst her make up. I asked her what that was for, and she said she likes keeping her toothbrush clean. Then she said, “Well, I guess I’m not going anywhere soon, so we can put it away.” Every day, it is something different and it is so interesting to see what her brain is telling her. Because each day, each moment, is a different journey. And confrontation and explanation is not working with her. Explaining that it is raining and chilly to someone who put on heeled sandals without socks, and capris PJs, with a heavy robe, is not worth the breath.

Soon we will be ensconced in snow. I know many people are afraid of winter weather. But I love winter. The peace and quiet of a snow-filled landscape just fills my heart with serenity and calm. The silence of falling snow is incredible. I was raised in Southern California and growing up sun-drenched and then discovering states with weather ignited a joy in me I find hard to describe. I used to tease my father-in-law, who was a life-long Coloradan, about the wonderful sound of scrunching snow as we walked on it. He had taken it for granted, hearing it his entire life. But after meeting me, and seeing my joy in it, he never forgot and would chuckle when he heard the sound thereafter. And I find myself longing for the peace and serenity in winter. And as we approach the weather inherent in winter, I also look at mom, slowly descending into her own winter. And I am working at being a better daughter and care giver…reaching out to hug more often, or to smile more often. It is becoming a quieter journey, and I think for two women, that is quite something!

 

 

“…promises of the heart…”

This week has been sad, stressful, and educational. LOL. My mom’s Alzheimer’s has greatly increased. On top of the mental issues, there are physical ones, as well. She is having difficulty swallowing. As I documented in a previous post, we had to contact 9-1-1 for her after a recent choking incident. I have been in contact with her doctor and she feels that mom is too far advanced for a “swallow study” because she does not have the comprehension to complete one. So, we are just treating her like a young toddler, in regards to foods we serve her. So much fun. It takes me back, because my baby is almost 20 years old. Trying to be creative with smushed food. Ha-Ha.

For most caregivers of Alzheimer’s patients, one of the most difficult issues is toileting and cleanliness. And when those two things are not done appropriately, it literally seeps into everything else. Their health is greatly affected. Mom is on her 4th UTI in about 6 months. This one is particularly virulent and the ER doctor called us with a change in medication, after her culture had been grown for a few days. For unknown reasons, bathing is an issue with Alzheimer’s patients. There are as many theories about it as there are patients with the disease. And I think I have read them all, or at least people have told me their ideas about it, ad nauseum.

Mom’s UTI is affecting her emotions and her personality. And each time she gets another infection, it reacts quicker and deeper on her brain. I used to care for my grandmother. One time, my kids were playing soccer and I got an emergency call from the police and had to run over to her apartment. She claimed people had broken in and was so afraid they were still in there. So I rushed over there, and a police officer intercepted me before I could get to my grandma. He explained that there had been no break in. Grandma was fine. Nothing was broken or taken. But there was something wrong with her. She was refusing care and was extremely rude to the paramedics and police officers in attendance. They were asking for my intercession. It took me, quite literally, hours to convince her to go with me to the hospital. And once there, they admitted her overnight. And at times, had to restrain her. She had so many UTIs, she eventually died from one, while living with us. There was nothing they could do, because the infection went systemic. UTIs are nothing to joke about. And unfortunately, because of anatomy and a cruel twist of fate, women are far more susceptible. Add to that the propensity for Alzheimer’s patients to be more likely to get them because of their compromised immune systems, and we are slated for failure. Sigh.

It is now the end of September and Fall has arrived. Up here in Alaska, we have what is called, “Termination Dust.” This is what happens when we get a good rainstorm and it is cold enough for the first dusting of snow on the mountain peaks. Usually the dusting of snow stays put from here on out. We get those colder nights, cloudier days, and winter is on its way. The photo above is of Turnagain Arm, just south of Anchorage. All along the eastern side of the MatSu Valley, the local mountains have the Dust, too. It rained fairly well overnight on Friday, and into Saturday morning. And now that Mom’s Alzheimer’s is in full swing, delving even deeper into that rabbit hole, weather has a huge affect.

Mom has PAD, peripheral artery disease, as well as aortic stenosis. It is not good; not horrible, but not good. Her hands and feet are always so cold. Her sense of touch is pretty messed up. Now that days are getting darker and shorter, her mind sees this and stimulates her other senses. Even though we have an automatic heating system my husband has set, and we maintain an average of 70 degrees in the house all the time, mom thinks it’s freezing in the house. She has never wanted to take off her heated blanket, nor stopped wearing her flannel PJs with fuzzy socks to bed, over the summer. For her, it never really warmed up. And now the descent into winter. This is her second winter with us, but she has no recall of that. She sees sun and wants to wear peep-toed shoes with very thin polyester slacks. The other day she did that, even though it was 50-degrees and raining. And today she has added that her coffee cup is too cold to add more coffee, because her coffee would just get cold (not recalling she just drank a fresh, hot, cup of coffee). And each time she goes to get dressed, she is insisting that her clothes are damp. I went to her room, and all of her undershirts were hanging around the room. When I asked why, she told me they were all soaking wet and she did not understand why there were wet clothes in her dresser. Sigh.

And so Alzheimer’s keeps us on our toes. Every moment is different from the last. Mom still naps a lot. She is hard to converse with. We spend many hours in total silence. She says things she shouldn’t to people she shouldn’t. She saves her worst self for me. Someone told me it is because our roles have reversed. I am now the mom, and I am the only one who tells her, “no.” Whatever the cause, the consequences for me sort of stink. And there are days neither my husband nor myself want to be here. We are soul-searching and thinking about what is best for everyone.

Our care coordinator once said, “We all make promises of the heart. And we try to keep them. Sometimes we need to rethink those promises in light of our minds and reasonable thought. And sometimes we need to change those promises to new ones; ones that everyone can benefit from.” She is right, of course. And so, we are looking for other promises, other options, and ways of finding the best route for everyone. Who knows? It may be more of the same. But it may not be.

 

 

 

“…like raising a child – in reverse…”

Mom: “Do you know my grandson, Andrew? He was in the Civil Air Patrol, you know. Oh, and here is my Bryce and his lovely wife, Theresa. Do you know them, too?”

Mom was looking at a photo book of her life my daughter-in-law and I made through Walmart. It was, seriously, the best thing we have made for her. We made it about 4 years ago. And each time she opens it, it is like she is seeing it for the first time. The other night, as she asked me those questions, I just replied that I did, indeed, know her grandsons. Because her grandsons are my sons. So my next thought was, “Who does she think she is talking to?” and as I thought that, I had to walk out of the room. She was reading the book from back to front (she changes it up) and I knew what was on the next page and I just could not handle it.

Just a few hours prior, mom asked me if I knew what was on the menu for dinner. I replied that I had not checked. She said she was going to go down and check and would let me know. And I told her that was fine. The problem? There is no downstairs. We live in a ranch-style home, with 3 bedrooms and a great room. Not a large property. Mom put on fresh lipstick and grabbed her purse. And then, she proceeded to look for the elevator to go downstairs. It was not the front door, mud room, back door, or hallway. She looked around, so confused and lost, and said, “Hmmf” and sat down in her special spot on the couch. And she did not have a clue where downstairs went. She faced the maze of doors and could not find her way out. Her face blanched in confusion and she just kept swiveling her head around, looking for the way to the elevator.

About four months ago, we chose, on the suggestion of our doctor, to take mom off all her Alzheimer’s medications. We had them on hand, just in case we wanted to re-start them. When we began to remove the meds, one at a time over more than a month, we truly did not notice any difference. She was sleeping more than she had. But she was not as cranky or feisty. She was, however, more adamant about things like time. Or where she places her magazines at the end of the day. She is more concerned about where she sits, but she doesn’t bother with eyeliner and mascara. She rarely even gets dressed. But we noted that the medications had not made a huge difference in her life, and so we all agreed we would just keep her off them.

The doctor explained that at some point, medications cannot stop this disease and it wins. It always wins. And now that the medications are off the table, we have a new normal. Mom is losing so many memories, so quickly. She is so confused about everyday life. She still thinks she came from New Zealand straight to Alaska, skipping over 65 years. She rarely thinks about her marriage to my dad. She hardly remembers her husband, my stepdad, Frank. When my oldest son walks in the door, she barely reacts. When the grandkids walk in (let’s be honest, when they run in) she gets all excited. And when I start using names, it clues her in, and she plays along. The medications are no longer working, but Alzheimer’s sure is. It was inevitable that it would take over my mom. Slowly but surely, she is less and less present each day.

The other night, mom choked on a cheeseburger bite. This was the third instance of her choking. (Tonight was the fourth). We were at my oldest son’s house and it was a little crazy and chaotic. Kids, puppies, neighbors with their kids, movie on the TV….and mom eating while sitting on the couch. She choked so badly, she was purple and her eyes were so darkly reddened. So, we called 9-1-1. She was having a hard time breathing. She kept spitting and gasping. It was frightening. One of the things most people do not realize is that Alzheimer’s is a degenerative disease of the brain. What does the brain do? It runs our entire body. We have functions we do not have to think about – our autonomic functions – like breathing, and our heart beating, and blood pumping; the functions of our various organs. We don’t have to tell our heart to beat or our lungs to inhale and exhale. Many months ago, the doctor told me Alzheimer’s is like raising a child – in reverse. Some infants have a hard time suckling when they are born. We call in lactation consultants. We teach them how to swallow milk. We work slowly on increasing their suck response and their swallow. As they grow up we introduce soft foods until they have teeth, when we introduce foods requiring lots of chewing – and swallowing. As Alzheimer’s develops, the ability to swallow is impacted. It is like raising a child in reverse. Mom is in Depends 24/7 and we are now going to be introducing pureed food. It is not that she cannot appreciate the chewier foods, or that she cannot chew them, it is that her swallowing is getting all mixed up. Raising a child – in reverse.

Once we got her heart rate and blood pressure down, we went home. My husband is gone for the week and my youngest son is housesitting for two weeks, so it is just me and mom right now. The drive home was also not fun, “I am so sorry you have to drive home all alone in the dark after you take me home.” This disease is speeding up. Things would develop here and there. But now, there is something new daily – and they are not trivial, but profound. Mom sat and watched the dog chew a bone today. I had to explain to her at least 5 different times, in the space of about an hour, that the dog (Poca) was chewing a dog bone. She was not chewing the floor, or her leg (yes, she thought that one time) or gnawing at her dog bed. She was eating a dog bone. Mom just could not comprehend the fact and would keep looking intently at the dog’s behavior. That may not seem profound, but the fact that I was continually explaining was. Then there is the fact that she turned to me, looking for her key to her apartment. In a panic she lost it. Again. Or asking for her medications (she no longer takes any at night) 4 times after standing up to head off to get ready for bed. Around 5 o’clock this evening, she dressed to run to the pet food store and then we were going to pick up Chinese food for dinner. After I told her she would not be getting out of the car, she walks out in slacks and peep-toed sandals (bare footed in them), a sweater, and fresh lipstick. It is 50 degrees and raining. She keeps thinking she is in California. Which further confounds me, because when you ask her she thinks she came here from New Zealand. Sigh. Alzheimer’s is so weird. The brain is certainly an interesting organ!!

I had a friend caution me not to let Alice grab my leg from down the rabbit hole. Sometimes I think Alice has me by at least the calf!!

“I’m like far, like real far away…”

Today is an interesting day, so far. I tried to explain to mom that we are expecting someone to interview for a caregiver. She got so angry. She does not want any part of that. She said, “I would rather climb into a pine box in the back yard.” Then I explained she is being cremated, per her request, and her ashes put with her former husband, who died about 5 years ago. She then said, “Well, he died, you know.” Yeah mom, I know. She wanted to shower last night, but then said she was too tired and “I can’t be bothered.” So I asked her if she would like to shower now. She said said, “I can’t be bothered.” I explained that someone was coming over and she could stay here in her PJs on the couch, or she could shower and get dressed. She ignored me. She then says, “I don’t need anyone here.” I explained I could not leave her alone, and that she was not safe alone. She gave me the eyeballs she saved for when I was in trouble as a kid. So, I handed her my phone and told her to call 9-1-1. Pretend I am injured, or she is injured, and needed help. She said she could if she had to, but didn’t need to, so she was not going to do it. I asked her to call anyone she wanted to talk to. She held the phone and said, “With all these numbers and letters, no one could use this! And what a cute little girl.” I told her who it was (it is a photo of my granddaughter, her great-granddaughter), and she said that with all those numbers and letters, how would I know who it was!?!? First off, I abhor a messy screen.

 

So that is my actual phone. And my adorable granddaughter. LOL. But mom could not figure out how to “press home to open.” And then she told me I was “free to go do what you needed to do” and I had to explain that she can’t be left alone. She huffed and decided not to talk to me. She was over there, on the couch, just fuming. Her cheeks were red, she was so angry. Secondly, I told her she needed help to do some things she always used to do. “Like what?” “Well, can you make yourself lunch?” She just looked at the kitchen, shrugged her shoulders, and sighed. I left the room.

So in my frustration, I contacted our Care Coordinator. (And to Liz: I cannot in any way, fully express to you what an important part of my life you are. You help far more than you will ever realize and I am so very thankful for your patience and help. You are incredible at what you do. We are blessed beyond belief). She basically instructed me to let it go; to ignore my mom. As she explained to me, my mom is past the time where I can have constructive conversations with her. She cannot make sense of this world anymore. She cannot reason. She is basically three years old…about the age of my granddaughter above. (She is only 2, but close enough). And that I need to ignore her. If she will not cooperate and get bathed and dress, so be it. Treat the interview as coffee with a friend. Don’t talk business around mom. Just let it be light and entertaining. Leave her out of the conversation. Sigh.

And so this new normal – it is not my problem – it is Alzheimer’s. And it is not going back to whatever it was before this moment. I cannot expect my mom, or the conversations we once had, to continue. This moment is all we have, and we cannot compare it to any other moments we may have had. Right now, mom has no clue someone is coming over in less than an hour and that it will impact our lives from here on out. This person we are interviewing as a caregiver, she has the potential to become a part of our family. She has the potential to be the main person in my mom’s life, her caregiver, and I can return to being just her daughter.

Today, when I asked her the last time she showered or put on clean depends was, she got so angry and said, “You know, you get awfully personal sometimes.” I had to explain that caregiving is personal. It is taking care of all the needs of a person. All their needs. Bathing, toileting, laundry, feeding, cleaning their personal space. Those are all very personal tasks. And that is why we interview caregivers. We don’t blindly hire just anyone to come into our home.

So, as we continue this journey, we start making changes. I need the help. I need to get away from my mom for at least part of the day. And at my age, I also need to care for me. She is beyond the point of understanding that, and I have to move forward for the both of us. So today, I am ignoring her and moving forward. I am making decisions and choices for both of us. And as I have moved forward, mom is snoozing on the couch, in her PJs. Her clothes are laid out for her; her toothpaste is waiting on her. And she is sleeping. Our new normal at 12:15 in the afternoon. Sigh.

God is not through with me, yet. Because the phone rang. The gal I am interviewing as a caregiver, well, she called. “I totally forgot our interview today. And I am, like, real far, like real far away. Can we do this tomorrow?” My first inclination after the day I have had so far is, “Not only no, but hell no.” All I did was say, “If and when you come to care for my mom, I certainly hope I can rely on you.” Her reply was, “Well, after our ‘meet and greet’ I will always be there.” I am so unimpressed. Good Lord, Alzheimer’s is hard! And mom is still asleep. I am done today. LOL. Think I will call the agency, again. I am having ANOTHER bad day. LOL. They are strung together like cute lights…

“…and straighten my crown…”

Chaos reigns supreme. It is Monday! A true Monday. Mom is lost…so lost. This weekend was full of a new thing – hallucinations. And they were doozies! And they are continuing on into today….

On Saturday, Mom asked me where her husband, Frank had gone. I explained that he had passed away more than 5 years ago, and that she had only been home with me. Her reply was, “Well if he wasn’t here, then I have had the most real, awake, dream of my life. So if it was not Frank, who has been with me all day?” Yeah; again, just me. She even went on to see people at tables or chairs in our back yard. She saw animals running across our yard. She wondered what was on the menu at the restaurant downstairs and told me I could call down to the desk and they would tell me. (She lives with us, in our one-story home). She told me I could grab a chair from the public room to bring into her apartment while she did her housework (again, she has a bedroom in our home). She was, again, looking for her apartment door key. And rifling through her clothes drawers, insisting things were missing from when she had moved into this apartment years ago. She did not want to leave her magazines out by the couch, because the others would take them. On and on and on I could go, giving examples of the progression of this horrible disease.

“Let all bitterness and wrath and anger and clamor and slander be put away from you, along with all malice. Be kind to one another, tenderhearted, forgiving one another, as God in Christ forgave you.” (Ephesians 4: 31-32)

Some days this forgiveness thing is as easy as breathing. Some days, old habits are revisited and my heart is aching from the pain of it. My husband spoke so gently to me yesterday. I was so fraught with despair and sadness at the progression we are seeing, so rapidly, in my mom’s brain and body. I went to him as he was mowing the yard (we have an acre of mostly grass, so it takes a long time) and he gladly stopped to talk to me. I ended up leaning against his chest and he held me while I cried. And he said something that resonated with me. For him, when mom is acting all weird or in her own reality more and more, he just shrugs his shoulders and thinks, “Oh well. What are you going to do? She thinks it, so it is it for her. Let it go.” And I so need to do that. I need to just forgive her sharp tongue and mean comments, and let it go. I need to work on letting the crap, the dross, the extra all go. I need to focus on being more tenderhearted. Sigh. So hard some days.

“Therefore I tell you, do not be anxious about your life, what you will eat or what you will drink, nor about your body, what you will put on. Is not life more than food, and the body more than clothing? Look at the birds of the air: they neither sow nor reap nor gather into barns, and yet your heavenly Father feeds them. Are you not of more value than they? And which of you by being anxious can add a single hour to his span of life? And why are you anxious about clothing? Consider the lilies of the field, how they grow: they neither toil nor spin, yet I tell you, even Solomon in all his glory was not arrayed like one of these. …” (Matthew 6: 25-34)

One of the hardest things with being a sole caregiver to a loved one with Alzheimer’s, is to not worry. I worry all day long. Concerned she is safe, happy, fed, dry and clean, amused or occupied. The list is endless. And I never had this concern just parenting my children. This is a completely different ball game. I never worried overmuch about daily challenges in raising kids. You just did what needed to be done, guiding them as you went. Each day was different, but certainly not a life or death experience. With mom losing so much every day, I worry this could be her last day. Will it have been a pleasurable day? Will she have known she was loved? Or was I angry and frustrated? Was mom flustered because my attitude created tensions? Was I making her last day a good day? Every day. Every day.

“Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything.” (James 1: 2-4)

I know that God is so not done with me, yet. I know each day is an opportunity to grow in my faith, lived out in caring for my mom. Each day the Lord gives me the crown again, allowing me to revel in being the daughter of the King of Heaven and Earth. And I forget I am not really the “sole caregiver” of my mom. I have my husband and children supporting me. I have an amazing team around me in the Alzheimer’s community. My mom’s doctor is so incredible. And we will all walk with her, as this disease continues to darken her shine, and damper her light. God is with me, with her, with us. And it is a sort of pridefulness to think I could do this all alone. This week I am interviewing a woman to come in and be the “personal care assistant” for mom. And I will have another person on this caregiving team. And I need to pull myself out of this depressed funk, wading in all the dark of this disease. So I press forward and hold mom’s hand as we walk this Alzheimer’s disease to its inevitable conclusion. And “on the darkest days, when I feel inadequate, unloved and unworthy, I remember whose daughter I am, and I straighten my crown.” Amen.

 

“Breathe in, breathe out…”

Some days there is just no way around things. Some days there is very little good, competent conversation. I am trying so hard to let go of all expectations. Some days I can do that. Some days it is next to impossible. Today was one of those next-to-impossible days. My mom has always had a sharp tongue. She has always been rather bitter and quite often, very cruel in her comments. When I told friends I have had for many years that my mom would be coming to live with us, they were in shock. Several questioned why I would do that, because my mom and I do not have a peaceful history. During HS and college, it was pretty bad. I moved out the minute I turned 18. Ha-Ha. But I knew this was something I should do, because, regardless of how poorly we get along or communicate, she is my mom.

I have a friend on Facebook who cares for her mom in her home, too. Her mom has frontal temporal dementia, and it affects her a little differently. She regularly posts videos of her mom and they just melt my heart. Her mom is so gentle and sweet, but you cannot understand a thing she says. She is constantly talking, but it is all gibberish. Every once in awhile, you can distinctly hear, “I love you,” and each time she says it, she kisses her and it just melts my heart. The kisses can be on her shoulder, or she will grab her hand, or just lean into her. My friend and her mom have worked out a way to communicate. Most of the time it is a guessing game, but they are making it work. Those of us who are privy to these videos have been blessed by the moments we have seen.

When I was younger, math was my obstacle to having a sensical, successful, life. I am not a math person. I love science. I really do not like math. Numbers are fun. The whole thing with “9s” is kind of cool. But when you add in unknowns to an equation and slap in the alphabet, you lose me. My dad, an engineer (not only am I the daughter of an engineer, I am also married to one) could not understand, why I could not understand, Algebra. I recall my first parent-teacher conference when he and my Algebra I teacher, Mr. Houser, got along like two old friends. Both of them chatting away and simultaneously looking at me, and both saying, “It’s right in front of her; I don’t know why she doesn’t understand this…” Ugh. And to this day, I can handle hand-written spreadsheets, and I can even function fairly well using things like “Numbers” on my Mac or even an Excel sheet on a PC. But my forte is on the other end of the spectrum…words. Love to read. Love history. Love discussion. Love learning new things about other places, people, and things. I am common-sense oriented.

Mom and I have always been like oil and water – we don’t mix well. She is so quick and sharp in her speech and her judgement, I was often left reeling, wondering what just happened. It is like living with a tsunami or volcano – you just never know when or how you will be overrun. And I have tried to not be like that. I have worked hard at being kind. I have worked hard to be more silent, and less judgmental. My eldest son taught me a huge lesson about that, which I have never forgotten. (I blogged about that in an earlier post, referencing tattoos and outward appearances). My mom, at one point, had mellowed. But we all realized after my stepdad passed away, that he was great at managing her, and she accepted it. And this was also before her Alzheimer’s kicked in. Now, there are no social constraints on mom. She says what she is thinking, when she is thinking it. And she is so confused. She believes she is making sense. She thinks she knows what is going on, and that she is making sense. She just, this minute, asked me, “Where did Frank go?” I had to tell her he had died 5 years ago. Then she asked me where her apartment key was. I explained that she lived in my house, with me. Sigh. Earlier today she yelled at me and when I asked her what she meant, she informed me that “anyone else in this world would have understood that.” Yeah. I had said, “Pardon me, mom, I don’t understand what you mean.” Because you cannot say, “Excuse me” or she will move out of your way. Ha-Ha. The joys of being raised by a Brit.

Every once in awhile, you get to that breaking, snapping point. The expression, “My give-a-damn is busted” seems appropriate today. And so, I left my mom in her “apartment,” fuming because I refused to engage her anymore. When I walk away, it makes her even madder, because by walking away, I am not giving fuel to her tsunami or volcano…I am throwing a bucket of cold water on it. I am moving “above the fray.” And I practice my deep breathing. I center myself. I pray. And I took a shower, all by myself, without her coming in, because I locked my door. Above the fray…lol. Whatever it takes to keep the peace. Breathe in, breathe out….

UPDATE: Of course, God always, always has lessons for us. As I struggled with mom up until I was helping her into bed, she grabs me around the neck and says, “Jan (she used my name – huge!) I love you so much. I could not get through my days without you. I am so proud of you. You are a wonderful woman. I love you.” Again, this is why I love my mom. When she is in full mom-mode, there is no one like her. Sigh.

“…walking each other home.”

Some days are great. Some days are not so great. Some days are rather dark. Today was a dark day. We had my mom’s doctor’s appointment today. First of all, we had to deal with showering. Mom gets so confused about shampoo and soap, which direction the hand-held hose should go (I am eternally soaked!!) or if she needs to use the washcloth full of soap on her head. That is such a long process, and it is draining for us both. I had laid out her clothes and when I went to check, she had changed tops and it did not match. I know now she definitely cannot tell the difference between navy blue and black.

We got to the doctor’s appointment on time. Which was miraculous. We are having another gorgeous Alaska day, full of sun and a slight breeze. So the mood was bright. Mom was on her game. She had put make up on, even blush, and her eyebrows were decent, too. LOL. We had a little wait, but with this doctor, I don’t care. Because she is the sort of physician that will sit with you and chat with you until she feels she is done. That can be 20 minutes, an hour, and even once, it was 3 hours. She is an incredible gerontologist who takes her role seriously. Today we chatted and she assured me that when she accepted my mom as her patient, she also accepted me. We were at this point in our conversation that I was concerned she could not always be mom’s doctor. And I actually started crying. She assured me that she knew she was my anchor and she would remain my anchor, to the end. And she sat there, hugging me and reassuring me as I cried. Because some days, crying is all we can do.

You see, today we had that hard conversation about the end. I had so many questions about who I call if this happens, or who I call if that happens. What do I do if I wake up tomorrow and she is dead in her bed? What do I do if she is having a heart attack but has a DNR in place? What do we do when we think we need HOSPICE? Who makes the determination, and who do I call? What happens when mom dies? Do I call you (the doctor) and are you willing to sign her death certificate? Do I have to call the paramedics? Coroner? Mortuary? What paperwork do I need to have out and readily available? What if paramedics want to do more than mom wants? We have nutrition and hydration selected for her; is that a good thing or bad thing and why? So many questions I have had. Because I can see the end of the road. Mom has declined so much over the past month. She has lost so many abilities in such a short time. I know there is not a lot of time left. And I keep having nightmares with all sorts of different endings. So I needed today’s chat. But it was a heavy conversation. And so we made hospice plans. My God. I did not think I would be doing this so quickly. She is not ON hospice, but it is all ready to go. Because it is coming.

One of the things I have learned so far in this journey with mom is that we cannot do this alone. We are blessed beyond belief with our gerontologist. I did not realize what a difference using a gerontologist would make. And she has made an incredible difference, because she understands how the bodies and minds of the elderly function. She understands diseases of the elderly, and how medication affects them differently. And she does NOT overmedicate. Which I love. In addition to that, we are blessed with a support team around us. A care coordinator and a care provider who work together to ensure mom has all she needs. They work with her doctor, the state, and all the various and myriad agencies and their endless forms, helping us navigate our way through. And we are working our way through it.

Doc told me today that mom’s highway no longer has lines, or edges, or anything. That I need to expect nothing. Her car is traveling down the road, ignoring signs, no lines, no shoulders, no stop signs or signals. And she is progressing to the end, in her own way. The only thing we can plan on is that there is an end and we have a game plan in place for that. It reminds me of those emergency exits for trucks who have lost their brakes, that are on the side of the road. That is basically hospice. We will catch you when you run off the road, and we will be there for you. Your safe place to land. Sigh. Heavy day today.

“Buster the Springer, and my wet capris…”

Today, as I ran some errands, I decided to take a moment and drop by the lake near our home. In a state with over a million lakes (and I am not kidding) it is pretty easy to find a local lake. Today, I stopped at Wasilla Lake. It was so pretty. It was 68 degrees and the sun was blazing. I made a new friend! A Springer named Buster and his owner, CJ. She was there with her baby son in a front carrier, her Alaskan Malamute, and Buster. They were having a great time, chasing a ball into the water and back out again. Unfortunately, I did not realize how friendly Buster would be. He came up to me, wanting hugs and cuddles, with his wiggly butt, all full of water. He shook out his coat all over me. And then begged me to throw the ball. So I did. What a wonderful break.

Up here in Alaska, when the sun is blazing and the temps are pleasant, everyone is outside. Surprisingly enough, the park was pretty empty. There were no jet skiers, either. It was just this young mom and her dogs. And it was the perfect interlude to a stressful time in my life. My mom seems to absorb all my energy. If I am not doing something for her, I am doing something with her. Even if I am just keeping an eye on a sleeping old lady. LOL. We got her a tray for the couch where she can eat her meals on. It has legs that go under the couch. She took to it right away. In fact, she had her coffee this morning and promptly fell asleep, her head drooped down over her magazine, laying on the tray. Not much keeps her awake. And she is getting particular about what she eats, and how much she eats. I think she is having a hard time seeing her food, getting it onto her fork/spoon, and then getting into her mouth. Most clothes are stained. The other day, she had a very bad choking incident, and we were so worried. She recovered and finished her meal. But it was hard to watch.

Today, I had to run to the vet to pick up a prescription for our Springer, Poca. She is 13 and a wonderful dog. She has been battling a skin infection on her back since late June. We finally had a firm diagnosis of what bug we are fighting, and I had to go pick up her prescription. As I made my way home, I just wanted to stop for a minute, catch my breath, and get some photos of where I live. And as luck would have it, I meet a fellow Springer owner. We laughed. We tossed the ball to the dogs. I got to play grandma to her little baby (talking baby talk is one of my secret skill sets) and I was taking time for me. It was only 10 minutes. But wow. I came home refreshed and was able to give Poca her new meds, and laugh at my soaking wet capris and flip-flops. I think this is a lesson. As caretakers, we need to take these moments away. To look at the sky, enjoy the view before us, and thank God for the many blessings in our lives. And then we can come back and dive back in this Alzheimer’s thing we do. God is good, my friends. He is there. All we have to do is look.

“Blessed, thankful, grateful…”

On and on I could go…I could talk endlessly about Alzheimer’s and what it is, what it is not, and the affect it has on people. But dang, I feel like it is ALL I talk about, all the time. And I realized it is because there is little else. LOL. Soooo….

It is now September. To welcome Autumn/Fall or ignore it? So many memes to choose from! LOL! My son’s girlfriend was mortified when she walked in and there was a turkey on the windowsill, Trick or Treat clings on the window, an adorable ghost by the TV, and random, fake pumpkins here and there. To be fair, it was the last week of August. But, when you live with Alzheimer’s, you just have to do it when there is a moment of downtime for decorating. Like I told her, I finally got to my filing pile on my desk, and at the bottom were my July 4th window clings to put in the holiday decor box under my bed. When I got it out, I opened it, and there were all the seasons, just begging to come out. I love autumn; I do think it is my favorite time of the year. So I grabbed decor and I am on it.

For me, fall is all about gathering, the harvest, pumpkins and gourds, and the awesome colors. I think living in the Pacific Northwest was the most incredible experience. The colors in WA state in the Fall will just knock your socks off. I finally understood the seasons, living where there actually are seasons! LOL! Here in Alaska, Fall is pretty short. All of a sudden, leaves are blowing off the trees while flowers are still trying to bloom. This morning it was 30 degrees. Yeah. The heater is blasting away. We have mostly Birch and Aspen trees, with some evergreens thrown in for good measure. For some reason, when we moved to Alaska, I thought I would be surrounded by Christmas trees and the smell of an evergreen forest. Nope. LOL. We even have a lot of ferns that grow wild here. I never would have thought of ferns in Alaska. And I cling to Fall because very soon, we will be snowbound. There is already what is called, “Termination Dust” on the local mountains. That is the first bit of snow that sticks, terminating summer. It happens every year, around the State Fair time of year, in September. And it is gorgeous.

These portends of impending winter are all around us. The air is crisp; the sun sharper. We have an early morning darkness creeping back in, and the sunset is actually early enough that we see it! LOL! Time is moving, slowing, and the world will soon be quieter, enveloped in the snow and darkness that is winter. I ADORE winter. People from the southern climates are somehow afraid of it. I was intimidated by it, but not fearful. And I discovered an entire new world, couched in snow.

One of my friends saw a post on FB and shared with me. It is keeping your Christmas tree up all year, decorating it for the seasons. I am so conflicted on this, because to me, Christmas trees are for Christmas. I have to fight my husband to put ours up Thanksgiving weekend. He thinks it is too soon, because we keep ours up util the Epiphany or Baptism of the Lord, in early January. But I have been tossing the idea around.

This is an Autumn Tree. I thought it was so pretty. I found so many photos of year-round trees. One was for Mother’s Day and it was all in purples. LOVE IT! The one for Valentine’s Day incorporates hearts and bows; St. Patrick’s Day had green clovers and hats and glitter; the one for Easter was so pretty, too, with lavenders and soft greens, along with eggs and flowers; the 4th of July was full of red, whites and blues, stars and stripes. So may wonderful ideas. And it marks the passage of time, to note the holidays as they pass. I have a long, sweater box under my bed, full of my seasonal decor like window clings, placemats, and other things. The chunky stuff is in a cupboard above my dryer. I love hauling it out and adding to the year. And I am thinking it might help my mom. Because today, she is lost in the National Geographic magazines I found (at 10 for $1). She occasionally will check her watch and comment on the day, as it passes. But she is still in PJs at 3:15pm, having slept through golf and baseball (okay, I may have joined her in the nap department for a bit) and looking around, lost. All she sees are her magazines, and from time to time, she will talk to the dog or make a random comment. Sigh.

With Alzheimer’s, their world contracts to the room they are in, the things in their immediate presence (she does not even notice the front door or the back door. Just what is directly in her line of sight) and time is something very elusive when you spend the larger portion of the day asleep. I am thinking I need to step up my holiday decorating, to enhance her daily life. To give her some stimulation so she knows what the seasons are, where we are in the year, and to give her some joy at looking around her. The good news? A Michael’s store is opening on the 6th and my son’s girlfriend was hired there. And she gave me DISCOUNT coupons for their opening night! This could be fun!!! Now, do you think I can convince the hubby? We will see…