“..home is a reflecting surface…”

So this disease my mom has is invading her mind more and more. She swears she locked herself out of her place; she has to find her key; where have all the people gone; who is in her stuff; when am I taking her back to her place….up and down from the couch, looking for her key. Putting hairspray on right before bed, “Because I always spray my hair at night. I spray it off and on throughout the day to save my style.” (And she keeps forgetting her head grows hair in the back, too. Never combs the back, or sprays the back. Just the front).

“Do you like my little guy?” Mom created this out of her mashed potatoes and peas. I told her it was cute and then asked her to eat her food. “Oh no, I could not eat my little guy.” And I almost said, “We don’t play with our food!” like I would have to my kids. Only this is my 88-year-old mom. And she refused to eat it. So I gathered our plates and threw her little guy in the trash. She had wandered off to the bathroom for at least the 10th time since dinner was served, totally forgetting her “little guy.”

And I realized we are no longer communicating. She has this world in her head and it no longer even resembles reality. I asked her to please go to bed, since she was not watching (she was actually sleeping) the program I was watching (Josh Gates is my new favorite, in his/my dream job on Discovery’s “Expedition Unknown.” That is him above. Remind you of anyone? Yeah, he is a total nerd and admits it. Loves Indiana Jones!! LOL!) She said, “Oh, but I am listening and he is just so good,” as she looked up to see what it was I was watching. Ha-Ha. Even Josh’s visiting foreign ports and searching for extraterrestrials could not hold mom’s attention. So, I changed tact. I just started shutting down the house. And after I let the dog out to potty, I started turning lights out and told her we were all going to bed. And she complied, although she had to stop at the bathroom for, I swear, the dozenth time tonight. I tried to get her to put on new Depends, but she got so angry and told me she had already taken care of that and she just wanted to get into bed, because she had a long day and was so exhausted.

Josh Gates has been to, and seen, some of the coolest things, ever. Sometimes he actually finds what his show is about, but most often he just lights up the screen with his enthusiasm for what he is doing. He makes learning about history fun and very exciting. And being a history buff, I just love it!! One of my favorite episodes is when they stop filming because he gets a call from his wife, and she tells him they are expecting their first child. He wept. I wept. It was so beautiful to see a man so overjoyed about becoming a father. The whole circle of life thing. And it brings home to me how singular and isolating, and very self-centered this disease of Alzheimer’s is. My middle son is expecting a baby any minute. Mom has no clue. She has no clue how many kids I have anymore. The other night, as she was literally clawing the walls at 1:30am, trying to “get out of this place. I don’t belong here” my youngest son went in to comfort her. She had no idea who he was. None. Mom is losing the world around her and is focused solely on herself. Tonight when I first suggested going to bed, her response was, “I go to bed when I want to go to bed. I do what I want, when I want.” With a loud “harrumph” at the end. Sigh. Alzheimer’s.

I love this quote from Josh because as parents, our goal is to raise kids who want to conquer the world. Even if that world is around the corner, or across distant horizons. And we pray that home is their beacon, and that they always want to return there. That home is an anchor, and they do not become idle wanderers. For mom, sometimes I think she has forgotten “home.” I am constantly telling her she does not live in a “facility,” but in our “home.” She has her own room, in our “home,” and that we are all family, together, in our home. She nods her head, but I know she does not understand. And I realized tonight I believe it is because her home is calling her. New Zealand. Her parents. Familiar sights and sounds, smells and flavors, are calling her. And her home is not with me, in Alaska. And I think she is agitated because she cannot truly settle, because she can’t find home. And I was wondering if that is the final agitation and unrest inherent in all these people suffering from Alzheimer’s. As their brains atrophy, their childhood is what is familiar. Even if they live in the same home they were born in, it will not be home because it is not the same. Their parents, siblings, friends and relatives, are not there with them. They are lost children, adrift in the mystery of Alzheimer’s. And it makes me very, very sad.

We have chosen to move my mom to a memory care facility. And somehow I think that she will be more settled there, because there will be fewer reminders of who she is not, and where she is not. I will visit as her daughter, in the right order of living, and not as her caregiver, cook, laundress, bather, toileting helper – as her daughter. And I somehow think that will provide her with more of an anchor than she has living under the same roof with me. Because I believe that every day, she realizes she cannot do what she thinks she should be doing. I am doing all the things she thinks she should be doing. On some level, she knows that. And I think it adds to her agitation.

Tonight I have come to the conclusion that not all of us can care for loved ones in our homes until their final breath. That we make these “promises of the heart, ” as my care coordinator calls them. And oftentimes the most loving thing we can do, is to change those promises, so all of us can be there, in the best possible way, for the ones we love.

I think I can sleep now. Blessings.

 

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Narrow the mission field….

Some experiences are surreal. Last Wednesday I walked into the Urgent Care here in town. People were smiling at me. They were saying “hi” as I walked by. Why, you may ask? Well, my mom is a regular at Urgent Care. Because of her Alzheimer’s, she has pretty regular UTIs. So we go and have her tested at Urgent Care, because it is faster than trying to get an appointment with the doctor. The doctor even suggests we go there. And since I have no regular doctor, I thought of them first when I was feeling quite ill. They were all flabbergasted the appointment was for me, and they kept looking for mom. Ha-Ha-Ha.

But, no, this was for me. Yeah. I posted earlier about stress and Prilosec! Well, the doctor encouraged me to finish the Prilosec, because it seems to be easing my symptoms. My blood tests came back stellar. The doctor told me he was actually shocked at how good my numbers, across the board, looked. He told me, according to my blood work, I am very healthy. Yay! I am overweight, so most doctors assume I have diabetes. I don’t. Sugar was great; cholesterol was great…on and on…it all looked good. Even all the pancreatic enzymes (which is always a concern) looked so good. But I have so much abdominal pain and other icky issues. So, he referred me to a gastro guy for a lovely colonoscopy.

I figured the referral would take forever. Nope. They called and scheduled it the next morning. Wednesday I have my initial appointment. And who knows? Maybe he won’t want to do one. (Praying).

For me, the important thing about this experience is the way in which the ER doctor spoke to me. The entire visit changed when we just chatted, after he had palpitated my abdomen and the entire gastric area hurt. He was chatting so I would relax, and breathe through the pain. I told him I was so late in the day (almost 2pm) because I had to ensure I had someone to stay with my mom. He looked at me quizzically and I explained that I am the sole caregiver for my mom, with late stage Alzheimer’s; that she lives with us and I could not bring her with me for this. (He has never been one of the Urgent Care doctors to treat my mom! Which was unique!) He then walked over to me and gave me a hug. I had never met this doctor before! He then explained that he thinks the bulk of my problems are probably stress-related. He thinks I definitely have something wrong with my intestines, somewhere along the way, but he thinks the stress is making everything worse. He also told me that I needed to care for myself before I could expect to care for others. He also said I need time for me. And that no one should go as long as I have without medical attention (it’s been at least 10 years since I have been to a doctor for general medical care) to assess what my general health really is. He has a point. I tend to be sort of a hippie-styled, prefer my essential oils, and use herbs (not that herb) when I cook and when I choose to treat ailments that come my way, sort of person. I have not been ill enough in my life over the past 10 years, to seek medical attention. I always look at it as the last resort, not the first thing I do. I know people who run to Urgent Care for the sniffles. Nope. Colds go away. If something is broken or I feel like I am dying, I go seek medical help.

So how do we caregivers get a handle on this thing? This daily, 24/7 stress? I worry about everything. Is mom eating right? Will she clean herself up today? Will she make a mess? Will she sleep tonight? Will she wear clothes? Will she argue and be a total Alzheimer’s patient today? Or will we have peace? Have all her bills been paid? Is her account okay? Where did I put that DNR? Where is the POA paperwork? Will mom fall today? What do I need to throw into the washing machine? On and on and on…and that is just the tip of the thoughts I go through…and this is just about my mom. How do I control this????

Well, I had an “ah-ha” moment with all this caregiving stuff. My mom and I had a particularly nasty encounter. Some days are joyful. I have tender memories of our times together, just loving each other. But as this disease has progressed, those moments are fewer and fewer. Instead, she has become so very difficult. She truly has no concept of where she is. She asked me just yesterday, “Where did I come from? Where are my clothes? Why I am here, in my pajamas? Where are all my things? I think I locked myself out of my place. Did you know it is 5 o’clock? Where is my purse? Thank you for having me as a guest at your place. I come from New Zealand.” Her thoughts are disjointed. She does not comprehend much. We used to only watch Steve Harvey on one of his many programs on the TV, because she just would light up when he was on. She now sleeps through even Steve Harvey. She does not watch things like “The Voice” or “So You Think You Can Dance” and other active programs. Her beloved Family Feud has become noise in the background. She will watch the wind blow. She will watch the sun on the plants in the yard, or the clouds skitter across the sky. She watches our dog with such intensity. It is hard, because she does not understand when Poca chews her bones…Mom thinks the dog is chewing on her own leg and gets so worried. And she reports the movement of the dog every few moments. She will not concede that she can hardly see, so we are having to constantly explain what she is seeing. Yesterday, the hubby was working in the yard and she was saying things like, “There is a white car in the backyard (it’s an F-150 Truck) and a man is in it. And…”There is a man working in the yard.” Then my husband walks in the house, asking for some water and she says, “Would you like a tour of our home? It is lovely.” She had no idea it was my husband, her son-in-law.

Our moment came when mom strode with purpose into her room. She was already angry about something. I followed her in and asked her what I could do to help her. She said, “Oh God, I hate this place. I hate this room. It is so damn hot in here, it is like a sweatbox! I work all day long and have been so busy and it is just too damn hot in here. I hate living here. I hate this place.” Well, I probably could have responded better. Ha-Ha. You see, mom has been cold since she arrived in Alaska. She was given an electric blanket for Christmas and has it on full blast at night, wearing flannel pjs and socks, along with 2 blankets, flannel sheets, and a comforter, in August. Sigh. So, we bought her a room heater. We had it on low, and automatic. So when we entered her room, the heater had just shut itself off. So, I gathered her laundry and the space heater, and left the room. She said some pretty hurtful things that I won’t share here; suffice it to say, my heart broke in two. As I hurried from the room, my stomach broke out in the hottest, searing pain, causing me to double over. I went into my closet, bent over in pain, and just wept.

And yes, it was an ugly cry – the ones with snot and sobbing and red, swollen eyes. And as I wept, I said to myself, “I am done. I cannot do this anymore. I am sick. My mom is slowly killing me.” It is time to move my mom into a memory care facility. And I contacted my care coordinator right then. She has been trying to gently nudge me into this mindset for months now. She has been with my mom and has seen her treatment of me, up close and personal. She believes, that with our family dynamic, placing mom in a memory facility would be the best option for both of us. And after talking with my family, they are all, across the board, 100% in support of the move. Most of them expressed shock that I lasted as long as I have. And even though mom has no idea of where she is, moving her is going to be fraught with drama. Because we are all around her, all the time. I am her anchor. When I am not around, she is constantly looking for me. And she is unsettled when I am absent. If I go to the store and am gone for 1-2 hours, she greets me like I have been gone for days. And she relaxes when I get home. So moving her away from me, in amongst strangers, will be hard for me, and for her.

Many caregivers are blessed with being able to keep their loved ones at home with them, until they literally pass away from complications caused by Alzheimer’s. And many never bring their loved ones home with them. Ever. They only, and solely, deal with memory care facilities. There is no rule of thumb. There is no perfect way to do this. Each person experiences Alzheimer’s in their own way. And each family is completely unique. So, for others, placing their loved one in a facility is out of the question. And for yet others, having their loved one at home is beyond their imagination or capabilities. We have tried it with mom living with us. And it is killing me, slowly. For our family, the trick now is to find the perfect fit for mom – one we are all comfortable with her living in. I am calling places; places she will be comfortable in; a place where I will be able to return to being her daughter, and not her caregiver.

You know, it is healthy to know and realize when something has beaten you, and you need to re-group, and change directions. It is humbling, because I feel like a failure in many ways. But I also realize I have a Mission Field. It is my faith. It is my husband. It is my family. And it is the myriad of friends I have gathered around me. I now realize that I have become so isolated from them. And I am so not done living, yet. As I type this, my daughter-in-law is in labor with their 4th daughter. And I love her so much already, but I NEED to hold her and tell her I love her. I need her to know her grandma. I am not done, yet. (An homage to my husband). And so, we are redirecting this Alzheimer’s train. Deep breaths. I can do this, too. God has got my back; I know it. Praise be to God in all things.

 

“…simple…a check.”

I admit it. I have it bad. I mean really bad. I cruise all the pages, every day. I talk back and forth with others. We share the same fever. And I fantasize. One guy today told me the cure to my fever was simple – a check. LOL. Isn’t a check the cure for many things???

Yep. Puppy fever. Bad. I wrote a blog post about it earlier this year. My patient hubby thinks it will go away. But it has not. Today, another breeder announced a new littler, ready in time for Christmas. Sigh. Music to my ears.

Everyone has a sort of pet they envision; one that fits their personality. Some people have reptiles, others have birds, or cats, gerbils and chinchillas, mice and rats, gold fish or elaborate aquariums, horses and sheep. And then there are dog people. LOL. My kids are in camps. My one son has almost all the animals listed above, minus cats and the larger outdoor animals. My other son has a cat. We have had pretty much all of them, minus a horse. Our boys were 4-H kids. So we had quite the array. And we lived on a dairy farm for most of their youth, so the variety of farm animals was all around us. A cousin came to live with us once and brought her pet rabbit. That was an adventure. Regardless of what type of animal you prefer, they seem to lighten up our lives. At least for those of us who have pets. Some people just prefer plastic plants and stuffed animals. I like the real thing. LOL. Okay, I do admit I have a pretend cactus on my windowsill in my kitchen. Hey, we live in Alaska! It is hard to grow cactus here.

The hard part about loving a living thing is that they eventually die. There are breeds of animals that are very long lived. We had a neighbor who had a tortoise that was literally hundreds of years old. And there are those breeds that are very short lived. Goldfish you win at the school fair usually do not last too long. LOL. Then there is my son’s school fair goldfish. I think he is like 5 or 6 years old!! An exception to every rule. Ha-Ha-Ha. And they just bought him a larger tank! He loves it.

My favorite breed of dog, in case you cannot place it, are English Springer Spaniels. We were introduced to the breed when our boys were small, through bird hunting in California. They are excellent flushing dogs. We used to hunt quail, which requires flushing to find. We were given dogs from hunters we knew who had a lot of Springers and wanted us to enhance our hunting experience. And we realized that this was the breed that perfectly fit the personality and tone of life in our family. They are called velcro dogs. They love their humans! They are boisterous and busy little dogs. They can weigh from the 30-pound range up to 60-pounds. European bred Springers tend to be heartier and beefier than many of the Springers bred in the USA. Me, I am a sucker for those eyes. Those faces are just too cute. They shed. Oh my word, do they shed. But they have the most amazing personalities. I just love them. We have a Springer. Her name is Pocahontas (Poca for short) and she is a rescue Springer. She came to us at 5 years old and she was perfect. She and our youngest son, to use a dog-term, are a bonded pair. She has a pillow on his bed. They are too cute together. Now that she is 13 and he is almost 20, she tends to cling to me or my husband a little more, because her favorite human is gone a lot. She is a bundle of hugs, cuddles, and love. But she is 13. She aches. She sleeps with my mom almost all day on the couch. And we all know her days are very, very numbered.

She smiles at me and my heart cringes a little bit. Because I see our aging mirrored in my dog. She now has gray eyebrows. They crack me up. She is smiling in the photo above, and I mean that dog can smile. Springers are known to smile and tease and talk to you. And I think one of the things that has me craving a puppy is because I don’t want this joy with this incredible dog to end. I know a puppy will not be Poca. I know a puppy will not replace Poca. I saw a meme today that said, “A puppy will not replace the dog you lose; it will make your heart expand with more love.”

My mom was a little girl in the photo above. And I can see my grandchildren in her face. My kids don’t see it, yet, but someday I think they will appreciate the likenesses that happen along family trees. Genetics are just so fun. My middle son and his wife are expecting daughter #4 any day now, and he and I were recently discussing how she may look. Their three daughters all look so different – Red head, brunette, and blondie. And they are such individuals! They look sort of like the UN. It is beautiful. And we pondered the millions of genetic pairings our newest granddaughter may have. We will soon know how the genetic dice were tossed by the end of the month. As for Springers, there are very few genetic deviations. They all pretty much look the same, except for their colorations. They come in liver & white, black & white, tri-color, and roan. My husband says only the liver and whites are real Springers. He is so funny. I don’t much care. I am loving the variety, just like with all our grandkids. Genes are fun. But they are all my grandchildren, and all Springers are English Springers (as long as that is what it is you want – because there are Irish and Welsh Springers, too). So color is not a deal-breaker for me. It’s more of just a puppy thing. (Love you, babe!!)

And I know my yearning for a puppy is a yearning for life, for joy, for something to get this old home excited. Mom sleeps most of the day with the dog, like I said. The hubby is working his tail off every day. The youngest son (almost 20) is working as a volunteer fire fighter, and training in a second career, dating his girlfriend, and pretty much gone all the time. And then there is me. I watch the aging. I watch the slow decline of my mom. Today she woke up and asked me, “Where is Frank? Did he go for a walk? Oh, look, it’s almost 1 o’clock!” and promptly fell back asleep. Frank, my stepdad has been gone for over five years. Mom is so lost. This morning she thanked me for inviting her over. She lives here. Last night she asked me why I was leaving the country…I have no idea where that came from; it was a new one. But I am surrounded with dying. I am dying. We are all dying. And I would love a little puppy to cuddle and giggle with. A dog to keep me company, as I journey down that last road home. I don’t think that is a bad thing. The hubby and I are looking forward to an empty nest and some quality camping/fishing. We long to own a tow behind camper. I picture us having a couple of Springers jump from the truck and rush into the lake as we set up our campsite. Sort of a matched set to keep us company. He is not quite there, yet. He is thinking empty-empty nest. Ha-Ha-Ha. I am not sure I want a puppy now, but I do want one. Maybe holding my new granddaughter later this year will fill me with so much joy, I won’t need a puppy. Instead of a puppy pile, it can be a grandchild pile! My 4-year-old granddaughter, who lives nearby, is the best hugger in the world. She can vanquish my despondency with just one of her super-hugs. I have love all around me. I am so blessed. But, dang it, I want a puppy. LOL. That little buddy to hang out with me and follow me all over the place. Puppy fever is alive and well…now back to peruse all those Springer pages…I mean, how cute are their faces????

On a end note here: Mom has late stage Alzheimer’s. Some days she does not know where she is, when she got here, if she has grandchildren, even who I am. But through all her fogginess of Alzheimer’s, she always knows the name of our dog, Poca. Always. That tells me something – about humanity and about dogs. And how deeply connected we are.

 

 

 

“God is already there…”

We are not guaranteed our next breath. Our next breath. A friend of mine, who is an amazing priest, used to remind us of this all the time. There are people coming forward on our Dementia site, telling us their loved ones have passed away. A friend lost her husband. Another friend had a very surprising heart attack. A local search and rescue effort is continuing for several people from our community, and prayers are in endless shouts to heaven for their well-being. And there has been weekly drama with my mom and with our family. It weighs heavily on my heart. And because it is on my heart, my stomach is listening full time and letting me know. Ugh.

Yeah. That. LOL. And so I am working on how I can separate my emotions from my gut. How I can stop worrying about things I cannot change, nor have an affect on. When you raise your kids, you plant seeds, you give them life lessons. And then somewhere around 15 years old or so, they start to have their own strong opinions. They start making memories outside of you. Sometimes I prefer being “fat, dumb, and happy.” But my grown children somehow love telling me stories about things in their youth I did not know of, and to be honest, some of them are fun, but most belong to them…meaning I really don’t want to know. And the kids somehow become adults, even without us. They have their own beliefs and ways of life. It is theirs, no longer mine. Sigh.

Somewhere along the way, I grew up and away from my parents. For me, I was having some fun arguments with my grandfather at 15 years old or so. We discussed politics and unions and voting and the general malaise of the 60s. My parents and grandparents are immigrants. They worked hard to have what they had; to give my brother and myself a good start in life. But I was not raised in a British country; I was raised in the USA. So our arguments were often centuries old. Like the Revolutionary War era revisited in the 60s and 70s. Ha-Ha. They quite often did not understand my thoughts or what that “stuff was they are teaching in the schools these days.” And I laugh because the circle has come around and now I wonder at some of the things my grandchildren will be exposed to. And I worry for our country and our culture. But that is a broad stroke sort of worry. What keeps me up at night occurs much closer to home.

My stress comes from so many avenues. I worry about bills, about money, about retirement, about health and happiness, about my mom, my mother-in-law, my kids, my grandkids, my DIL who is pregnant, if we are ready for winter, what is for dinner, have I done the laundry, got to get to that bathroom floor, trash goes out today, today we have local elections, my dog is limping, mom is so confused, and I hurt. My gut hurts. My back hurts. My muscles ache. And it is daily. Some days, I hurt too much to get much done. Other than feed my mom and worry more. LOL

Through it all, the Lord is calling me. He knows I am in pain. He knows what I need. And it is that ever elusive state of peace and contentment. Am I a happy person? Generally speaking I am. Am I a secure person? Actually, considering the list above, I am pretty secure. Today rain is threatening. Mom and the dog are both snoring. The trash is out and the leaky kitchen trash can is in the laundry room, soaking. I have calls I need to make and things I need to get done. But, here I sit. Writing. Typing and musing and working things out in my head. I use this blog to work out my own issues. Like a diary sitting on a desk, it is open and I welcome your reading of it. Why would I expose myself like this? Because we all have these issues. We may differentiate here and there, but we all have issues. And maybe sharing them gives me insight in the form of likes or comments and replies. And maybe it just enlightens others, and they learn they are not alone. Because I KNOW I am not alone. Which makes it all, somehow, very bearable.

“Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes? Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? Can any one of you by worrying add a single hour to your life?

“And why do you worry about clothes? See how the flowers of the field grow. They do not labor or spin.Yet I tell you that not even Solomon in all his splendor was dressed like one of these. If that is how God clothes the grass of the field, which is here today and tomorrow is thrown into the fire, will he not much more clothe you—you of little faith? So do not worry, saying, ‘What shall we eat?’ or ‘What shall we drink?’ or ‘What shall we wear?’ For the pagans run after all these things, and your heavenly Father knows that you need them. But seek first his kingdom and his righteousness, and all these things will be given to you as well. Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.” (Matthew 6: 25-34)

So here I am again, clinging to the promises of Christ. To His concern for little, old me. For HIs guardianship of my life, which I freely gave to Him. It feels sometimes like hanging on the edge of a cliff, or precipice. Somedays it feels like there will not be a morning, but God always gives us amazing sunrises. And so, my friends, through my stress, my aches and pains, my concerns, God is steadfast. And through prayer, He holds me up. Thanks be to God for His mercy. And thank you for your continued support and prayers! No prayer is ever wasted and I thank you.

 

 

 

“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!!