About kaiserswest

A homeschooling wife and mother, and grandma to 5 beautiful grandchildren. This is just a place where I can muse on things in my life and the world around me. I don't pretend to be a great writer or theologian, historian or blogger, but I'd love you to join me on this journey!

“The world revolves around them…”

I am probably not in a good place to be blogging, but I have to get this out. Whether anyone reads it or not, I need to express myself. It is cathartic. I need to purge these emotions, or I will explode.

Not to beat around the bush, but today I blocked my father’s phone number. It is harsh, yes. But this man is so toxic to my life, I did something I should have done years ago.

My relationship with my father has always been fraught with drama. As far back as I can remember, I put him on this pedestal, and I worshipped the man. He always told me to not be like my mother, and whenever I did anything remotely like my mom, he would chastise me. And I was made to be ashamed of that. Whenever my mom would yell at us, and usually slap us, she would then tell us we had to stay in our rooms until our father came home. And we would have to sit and be quiet. I mean no sounds, no playing, just sitting and waiting. Sometimes it seemed like forever, but my dad pretty much was home by dinner time every night. He will tell you he worked 80 or more hours a week, and went to school full time, so he was not home very often. But not to my mind. By at least 8 years of age, he was home every night. Of course I was a kid then! But we had three wardrobes: school, church, and play clothes. And they could not be worn for other things. Once designated school clothes, you could not play in them. So after school we put on play clothes and played until it was time to get ready for dinner. Then we would have to wash/shower and then we had to be quiet, neat, and clean for when dad did come home. Every night. So, when my father arrived home to discipline us, we were clean and changed, and my brother and I loved it. He never spanked us. I can recall once or twice in my entire life. Rather, he would just talk to us. On and on he would talk. We would go into a coma after about 10 minutes. He droned on and then it was over. We actually preferred being slapped across the face. It was horrible and demeaning, but then it was done and mom was okay, and it only took a couple of minutes. Dad would lecture and brood – he didn’t snap out of it like she did. His discipline was usually mean. He would find what you really loved and take it away. I have never forgotten it. I promised myself I would never do that to my children.

My father expected me to become a doctor. And I tried. But I did not have the killer instinct required in the 1970s to compete in medical school; especially as a woman. I loved history and science. So I majored in Forensic Anthropology/Physiology and minored in Biblical Archeology. He did not support that college major. My brother did not even finish junior college, choosing instead to work for my dad, which my dad supported and funded. And I was on my own. Paid my own rent. Worked to put myself through college. For 10 years, finally giving up because I just could no longer do both well. Even after all those years in school, he repeatedly told me that even with all the education I had gained, that I was wasting my life. Why? Because to his extreme irritation, I chose to spend my life as a wife and mother. He also told me that even though he thought I was intelligent, that if he did not agree with how I was raising my children, he would sue me for custody because “grandparents have rights, too, you know.” At the time, I announced to him we had chosen to homeschool our kids. He thought it was ridiculous and who did I think I was, educating my own children?! Years after they had all completed school and have wonderful, full lives, he conceded the we had done a good job raising our children. Gee. Thanks.

I have not seen my father in more than 15 years. He chose to move to the other side of the country, away from his entire family, and moved near a step-daughter. None of his grandchildren from the marriage he had with my mother know him. They could not pick him out of a crowd. They all know he is bald and has a beard. That is pretty much it. My youngest son is almost 20 years old and he has only seen my dad twice in his life and has no memory of him. The last time he laid eyes on my dad, he was 5 years old.

My step-sister (who he moved to be near) and I had an interesting conversation. Because I have had trouble with my dad, I have always tip-toed and been careful about revealing much, or letting my step-family get close to me. Well, we had a heart-to-heart not too long ago and she explained that she has realized that my dad is a narcissist. I really had to stop and think about it. And I realized, she nailed it perfectly.

nar·cis·sist
noun
  1. a person who has an excessive interest in or admiration of themselves.
    “narcissists who think the world revolves around them”

I have always known my dad was obsessed with what he did and who he associated with. He has always labeled people – he always defines their heritage or their skin color or nationality, and then their degree. Sort of like, “Dr. John Smith, he’s this black man I made friends with last week. He runs the entire neurology department at NYU.” Always has to associate things like that about everyone. Even if they are poor and uneducated, he will comment on that, as well. When he calls or we have a conversation, he starts by asking how the family is and how I am, and then he waits for a moment, patiently listening to my sparse details, and launches into the real reason he called – him. He doesn’t really care what I have to say. He never has.

I have given my father 61 years of chances. Sixty-one years to just be my dad. As I have tried to explain, kids do not care what you do for a living. They just want you to be their parent, hold their hand, and love them. Regardless of the choices adults make, kids just want a home and family, mom and dad, and safe space. My father cannot define himself without an hour-long explanation of his career highs and lows, accomplishments, and sacrifices he has made for the world. My father always wanted to change the world in some small way, and to receive the accolades for it. But he never really did. Oh, he was an engineer who worked on the space program and other flight projects in the 1960s. He left that, worked to become a doctor of medical engineering and then worked in healthcare. He did some amazing things with pressure sores and seating for the disabled. He made and lost a small fortune. He worked a lot of hours. We either had a comfortable living or were pretty broke. Life was up and down.

I always wanted my dad to be proud of me. He has, on occasion, told me he is proud of things I have done here and there. But I was always made to feel I was not quite good enough. Never quite measuring up. And certainly not as good as my male counterparts in this world. Because, I have realized, since talking with my poor stepsister (she gets to take care of my dad and her mom, both of whom had forms of dementia) that not only is my dad a controlling narcissist, but he is also a misogynist. It took me over 60 years to get it. He loves women, a lot, but as women. Not in careers. Not as equals. And most of the women he dealt with in business soon grew tired of his treatment and ceased a relationship with him. He would see them as sex objects, but not as equals, and certainly never as superior. And in all his grief about not having a relationship with my sons, he has never expressed the grief towards my nieces, my daughters-in-law, nor my granddaughters. Nope. Only my sons, my brother, my husband. The men in the family. One of my sons said to me that he realized his grandfather was only finally interested in him because he had a degree and would finally be interesting enough to talk to. I cannot even property express how sad that made me…and how true it seems.

The crux of our most recent conversations was that my dad is right, I am wrong, I am a horrible person and each time he hung up on me today, his last comment to me was, “I will see you in hell.” Yeah. From my dad. (After than second one, I blocked his number). He has never accepted the fact that he is not “the most honest person you will ever meet” because my dad has cheated in business, he has cheated in life, and he has cheated me out of a relationship with him. He had an affair on my mother with his secretary, who is his wife. He has loads of regrets; yes. He has said more than once that he has made lots of mistakes and leaving my mom was one of them. But he always comes back to the same saying, “I know I am right. And I am right until you prove me wrong.” About everything. Well, telling him I know he had an affair, and that my mom shared his goodbye letter with me wherein he told her he was tired of us “leeches” in his life, and that he no longer wanted any part of it, did not fit his narrative. LOL.

So what can I garner from this? What is my take-away? Well, number 1 is that I never wanted the same toxic relationship my parents had with one another. My mom is also a misogynist. Weirdly enough. She treats me far differently than the men in our family. Far differently even than my husband and son who live in the same house. And she is too old to be taught anything differently, especially since she has late-stage Alzheimer’s. (I think that is something that came out of the 1950s expectations of marriage). So I married a man who adored his mom and his sister and was standing shoulder to shoulder with his sister, not relegating her to the back row. He respects me and has my back, 24/7. And secondly, I was not going to allow this sort of horrific attitude to influence the way I raised my own sons. I would not raise them to be like my father, nor his attitude towards women. And I have tried to make sure that my sons know they are loved and adored, that I could care less what careers they have, so long as they love God and the lives they are making for themselves. And that my boys would love getting up every day, making their way through this world as caring and competent male citizens. This is a world full of ugliness, but also of love. And I want my kids and grandkids to know love, above all. And then acceptance – full and complete, no strings and no qualifiers. I will not allow my father and his mental illness affect any more family members. I have now opted for no contact. Ever. The End. I will forevermore stop expecting Lucy to allow Charlie Brown to kick that football, because she never will.

 

 

Advertisements

“…a time to plant…”

We spent time this weekend in our yard. Hubby was rototilling in the back and I was planting baskets and pots in the front. It was a glorious weekend. We had all the doors and windows open and I was able to wash the front down, even the windows. The birds were tweeting. The clouds rolling through on a gentle breeze. It was such a gorgeous day. When you live in a snow state, you love spring and summer. It’s the time of year when you put your screens back on your windows, so you can open them wide, letting in fresh air. It is hard to explain to people who live in moderate climates, how precious days like these are to us.

Spring and summer are an important part of life. They are times of growth and birth, learning and developing. We are outdoors more, and we are exploring our world. We take advantage of camping and fishing, hunting and long drives in the sunshine, windows down! We are planting seeds in hopes of a plentiful harvest. We are churning up the dirt and exposing old roots, taking them out and smoothing the soil, praying for growth. We water, fertilize, and enjoy watching and tending to our sprouting, young plants. You can feel the life just humming through the landscape.

It is also the time of year up here when we are gearing up for political primaries. There are lots of community events to attend. We’re having almost weekly parades, bar-b-ques, and fund raisers. There are lots and lots of outdoor markets and places to go where you can meander through booths, while listening to local bands, and munching on local delicacies. You can actually meet and speak to your state and local representatives, mayors, and occasionally, governors and senators. And candidates who want to replace them. It is so fun to get out and see neighbors and friends from other towns descend on an event and just have a good time. I love living where people appreciate the clean air, the beautiful green countryside, and enjoy the camaraderie of living in small towns. Kids were running all around this past Friday at the local “Friday Fling,” playing along old railroad tracks, singing songs, and eating locally fried corn dogs and pork rinds.

We had such a joyous time, and the views did not disappoint. And it filled my heart with joy, watching my grandchildren running on those tracks with other kids, making up games and songs, while smiling the whole time. The sun came and went, and then decided to stay, warming us all. It filled me with warmth and happiness, to just be out and about.

My mom seemed to enjoy herself, too. She interacted with complete strangers, and I am sure none of them even realized she has Alzheimer’s. She can fool the best. But those of us who know her, we understand it is all show. Mom had no memory of the band playing or the wonderful gourmet grilled cheese sandwiches we enjoyed. She had no memory of the grandchildren being there, or playing with their new puppy, or laughing with my daughter-in-law’s mother, even as we walked to our car. She had no specific memory of the day at all, or even the past 10 minutes. But she was happy. She was tired. She had been fed in many ways by that excursion. It was good for her soul, even though she had no memory of it in her mind.

Mom may not have many summers left. We all have our days numbered. We all have fewer days left than we think we do. A dear friend of mine just did not wake up the other day. No warning of illness. Nothing. She just did not wake up. I was gobsmacked. I was stunned. I was crushed. I cried for hours after learning she had died. She was a gentle, loving woman who adored her family, her faith, and her new life in retirement. Her family has been left devastated. Everyone who knew her is feeling this loss. It has been horrible. And the day we went to his lovely Friday Fling, my friend had not woken up. I was determined to be out. To enjoy life. To love my family. To savor these moments. My friend had just moved to a new state and had experienced her first snowy winter and was in awe and in love with her new life. I am so glad she got to experience that satisfaction. It was good for her to know she had chosen the right path for her and her husband. It was such a blessing, even if her death was sudden and tragic for those of us who loved her well.

Alzheimer’s disease is often called “the long goodbye” and it is an appropriate moniker. Taking care of my mom is teaching me so much. Being right is not important, if a kindly and loving silence is better. Doing things in the right way, right order, or preferred method, not important. Wearing winter clothes in summer? Go for it. Orange eyebrows? Well, those I did fix. Ha-Ha-Ha. But I am realizing that in the day to day, moment to moment world of Alzheimer’s, there are very few spring and summer days, and lots of winter. Lots and lots of winter. So for me, her primary caregiver, I need to help bring more summer and sunshine into an ending full of winter. Mom doesn’t share the joy of plants or growing things, but she will enjoy the sun on her face, while I garden. So it’s a win-win for us both. Each of them, my mom and my girlfriend, had their spring and summers. They reveled in them when they could. One fell into her winter in one night, to her eternal rest (and may her memory be eternal). My mom is slowly falling into her winter. I could use all sorts of analogies about open windows and closed windows, spring cleaning, and living in dark environments like we do in snow states, for sometimes months on end. But I think you can see where I am headed. It’s just that when I see the sun and feel the life all around me, the stark contrast with my mom’s sinking into Alzheimer’s is more and more obvious. And my learning curve has been steep, at times, with managing this disease. My most recent and steep lesson as been in letting go and just living the joy of each, short moment. And I am grabbing those fleeting moments and trying to bring summer sunshine to her.

To every thing there is a season, and a time to every purpose under the heaven: A time to be born, and a time to die; a time to plant, and a time to pluck up that which is planted; A time to kill, and a time to heal; a time to break down, and a time to build up;  A time to weep, and a time to laugh; a time to mourn, and a time to dance; A time to cast away stones, and a time to gather stones together; a time to embrace, and a time to refrain from embracing; A time to get, and a time to lose; a time to keep, and a time to cast away; A time to rend, and a time to sew; a time to keep silence, and a time to speak; A time to love, and a time to hate; a time of war, and a time of peace.” Ecclesiastes 3: 1-8

“…the grass of the field…”

Ever feel like you are pounding your head against the same wall? LOL. Or that whatever efforts you are putting in are futile, at best? Oh boy. Yes!!!

My husband mowed our grass for the first time after the winter. He used a mulching blade, so it would break up the grass. And he also cut it more than once, getting it to a nice length. And when he was done, it looked amazing. I used a week wacker for the first time. I had fun, going around the edges of the house. I had never tried to use it before, because it intimidated me. But I enjoyed it. I think it will be my new toy in the yard. And then Monday rolled around and the grass looked awful. It was all yellow and dried out!

So, being the good wife that I am (lol…that’s for you, sweetie) I got out the hose and set about watering the entire lawn. It takes more than a day, because we have a tiny sprinkler head, attached to our hose. We don’t have sprinklers up here, because they would freeze over winter. Anyway, I started about 9:00am, setting a timer for every 20 minutes. And I had managed to get almost 3/4 of the lawn watered. And then, as I was folding laundry, I realized I needed to turn a light on. Why? Because the sky was totally black and it looked like the sky was going to open up and the rain was going to fall. I ran outside and pulled up the hose, just as the first drops began. And guess what? It rained off and on all night, and is still drizzling today. And the lights are still on, because it is rainy. And I watered my lawn. Yeah; futile effort.

In my mind’s eye, I see an amazing garden, with the majestic mountains in the background. And I hope to work towards that. But the reality is dry grass. Ha-Ha. Oh, and a sink hole where my garden is going to be. And I do not want to beat my head against the wall, or pursue something with even more futile efforts. You know?

A voice says, “Call out.” Then he answered, “What shall I call out?” All flesh is grass, and all its loveliness is like the flower of the field. The grass withers, the flower fades, When the breath of the LORD blows upon it; Surely the people are grass. Isaiah 40:6-7

 “Consider how the wild flowers grow. They do not labor or spin. Yet I tell you, 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, how much more will he clothe you—you of little faith!  And do not set your heart on what you will eat or drink; do not worry about it. For the pagan world runs after all such things, and your Father knows that you need them. But seek his kingdom, and these things will be given to you as well. Luke 12: 27-31

So am I watering in vane, because God takes care of it anyway? No. Because God tells me He will clothe me; He will take care of things. He also tells me “do not worry about it.” And so, I will keep on watering my field, seeking His Kingdom. I will keep on caring for these fragile things in my life. Is it just my garden still unplanted, or my grass brown and withered? Of course not. It is all of those I am charged with caring for – my spouse, children, extended family members, friends, community. They all get a little brown. They all have trouble poking through the soil that is life. But the Lord sends the rain. Sometimes the rain is at my hand, as I am charged with caring (watering) and my efforts add to those blessings of God. He certainly does not want us languishing on couches or indoors all day and night. He wants us out and about in this world. He wants us to care for all living things. And He will bless our efforts. Nothing is ever futile. The walls we bang our heads against will yield fruit, if we just stop to listen to the Whisper of God in our efforts. And our efforts extend out into our communities, one person at a time.

Take a deep breath, step to the left, and carry on. It is a new day. It is cloudy today, but today things were a bit easier, even without the sunshine. The Lord never gives us more than we can handle, futile feelings and all. The wall I bang my head against? That is from God, too. And I am working on changing my outlook, to accept it as His plan for my soul, and to be ever thankful.

Today is the first day of the Farmers’ Market this year, in our little town! It is cloudy and drizzling, but we are still going out and about. We can walk among neighbors, exchange pleasantries, and find joy in the bounty!!! After all, the farmers tilled the earth and watered the soil, too, rain or shine….

“I thank God in all remembrance of you…”

 

Some days I just flat out fail. Miserably and epically. Some days I get very little accomplished. Some days are epic in their enjoyment and successes. There don’t seem to be any of the other days where we are all smiles and we coast through until dinner time, and then bed. And it is exhausting. My head feels like it is on a swivel, because I am changing gears so quickly. And so often.

I look towards my kitchen, see my accents of purple, and I smile. I have adopted the color purple in my life pretty heavily. It sort of all came together when my mom was first diagnosed with Alzheimer’s and I realized it was the color of the movement. Then I saw an article about the Red Hat ladies, who wear purple clothing with red hats. I loved their attitude. Not the red hat part, but their attitude and the purple color. I saw some flowers I fell in love with that were purple, and so in our yard, we have all green trees and plants, with purple flowers. An entire flowerbed with nothing but purple iris. It looks amazing in bloom.

I wear a lot of purple. I have a purple key chain I had made at a craft fair, and I carry a purple purse, hand-knit. (It is so cool). My flip flops, bathrobe, and nightgown are purple. My husband is awesome because he does not complain. Ha-Ha. My first tattoo is all purple ink, and is a Jerusalem Cross. My second tattoo is the Alaskan Forget-Me-Not flower and 4 hearts among some wandering vines. All but the petals of the flower are purple with the flower petals a light blue. The hearts are for my two parents, my brother, and me. All in purple!

So what does this have to do with good days and bad days? I am working through it, but it made me think about focal points. And what we focus on, and what we have to let go. When I was preparing for my first son to be born, a lamaze class instructor told us to find something we could bring for labor and delivery to focus on. I could not find a thing I wanted to stare at. (It ended up I never got to use it, anyway…another story). And one of the things they talked about in the labor class is that focusing on something outside of where we are and what we are doing allows us to maintain our calm. With dealing as a caretaker for my mom, I have been searching for something like this. I have post it notes on my mirrors. They have pithy sayings on them relating to Alzheimer’s. But they don’t do me much good when I am not in the bathroom. LOL. So I came up with a plan. I have little purple things all over my house. And when I alight my gaze on them, it reminds me to take a deep breath, this is only a moment, and to move on. I plant my house plants in purple pots. I have little a little purple bowl next to where I sit in the living room. My phone has a purple case on it, as does my laptop. I usually have a purple piece of clothing on. I place purple wherever I can, for me.

So for those who struggle with this caregiving task we have taken on, I have a suggestion. Find something that helps you find your peace, your core, your center. And cling to it. Put little focal points around you that help you to cling to that core of peace in amongst the chaos that is Alzheimer’s disease. It is like entering that swirling vortex every, single day. We choose to help our loved ones as they journey in an ever-increasingly confusing landscape. They are lost. Sometimes they look around and have no one or nothing that is familiar. My mom was laying sideways on the couch, snoring. Then she started talking in her sleep. Laughing. Smiling. Talking. All while asleep. She woke up, looked at me, and went back to sleep. She was looking for her anchor in this world. And that is me. I am her something purple in this insanity of Alzheimer’s. And when she absolutely drives me crazy and I walk out, slamming doors as I go, I try to remind myself she is clinging hard to a past because she has no idea what today is all about. And I am the single thing in her life that keeps her grounded. And that is why I am who she lashes out at – I am the only person she really knows anymore. Her Care Coordinator reminded me, gently, that mom is pretty much residing in a world from more than 60 years ago. Today is something she has to get through, but she lives in the 1940s. She has no recollection of life before this house in Alaska in 2018, unless we go back to before 1953 and when she moved to the USA. When her Care Coordinator asked her where she moved from, she said she was living in New Zealand and I invited her to come here, so she did. Oh, mom. She made up a story that fit with the way her mind was working at that particular moment. She forgot she has lived in the USA all these years (almost 65 years). She forgot my entire childhood. But she knew she was connected to me. I was her purple, her anchor, in that moment. God bless her. This journey is so hard. She hurts me almost daily. She is nasty almost daily. She is stubborn every day. She will only do what she chooses to do, every day. And she usually wakes up with, “Damn. I woke up again.” Because mom is done. She does not like her life. She wants to be with Frank, my stepdad who passed away more than 6 years ago.

So for me, I cling to my little spots of purple in my world. It helps me find my peace when it can be shattered, almost by the hour. It reminds me I am living in service to another. It reminds me that my world is really part of an inherently intimate world within my mom’s Alzheimer’s – her disease runs our days. So some days fly by with delight and joy, and others are weighed down by one disastrous moment after another. But the days pass. And soon purple will be the color of remembrance of these days.

“I thank my God in all my remembrance of you…” Philippians 1:3

 

 

 

“Do not be like them…”

It is so hard to try and break the chains that have bound us in this life. We have chains that stretch back through generations. We inherit tendencies from our ancestors. The world impacts us. And sometimes it can help us break away from these ugly traits, habits, and tendencies. And sometimes it can enhance the ugly, or at least, reflect back what we are putting out there. And sometimes we can glaringly see these chains for what they are. It is then that we have to choose. Do we keep hanging on to them, or do we break them?

When you are a caregiver, or if you have chronically ill family members, you can see these chains in action. You see deep interactions between family members. Every day is a life-or-death day, due to these illnesses. So these expressions of family ties are heightened. You get things flung in your face on a regular basis. Your childhood comes leaping to the forefront. All my life I have been told, “Just don’t be like your mother.” I mean, my entire life. And now my mom lives with me. (Oh, the irony on so many levels!!!) But the interesting thing is that, for the most part, I enjoy my mom’s company. She is very, very difficult, and when she has one of her “forgetting” days, life is a challenge. I have learned to “step to the left” or to remind myself that “it is just a moment.” (I actually have post-it-notes that say that on my bathroom mirror). And today, well, today was not about mom, but it made me reflect on the urgings thrust upon me to not be like her, when the reality was more of “be like me” from my father. And he thinks he is pretty much perfect, always right, and that we all should learn from his example. And that has been for my whole life, too. Sigh. And somehow, even as a child, I tried to tap-dance somewhere in the middle of the both of them. Ha-Ha-Ha. One of my sons pointed out that my father is alone, and a lonely old man, who will probably die a lonely old man. It mades me sad. I think that my father believes it is okay to lash out and blame everyone for his state in life, because he is so lonely. However, he has never taken responsibility for life being what it is for him. He has never faced up to his own choices and the repercussions for those choices. And it makes me sad. I have tried, consistently, to forgive over time, (“Seventy times seven times” Matthew 18:22) hoping for a different outcome. Today’s phone call was much of the same. Silly me.

And sometimes, your genealogy, your ancestral inheritance, slaps you in the face. I had that today. And I hung up on it. Ha-Ha-Ha. You see, I allowed the God Box in the God Closet (see previous posts) that are reserved for this tumultuous relationship I have with me father, to be opened. Again. Sigh. And today my proverbial last nerve snapped. And so I hung up, mid rant. That was hard, because time for our relationship is running out. And that could very well be our final conversation. But I said what I wanted to say, and I chose to break those chains and not repeat all of that crap with my own family, my own children and grandchildren. The revelation for me was that today I was just finally done with it. I was completely overloaded. I just could not find room for more. Part of it is, I am sure, caretaker burn out. But most of it is so much of the same for more than 60 years, that it finally took its tole on my psyche, and my heart and soul.

“Do not be like them, for your Father knows what you need before you ask him.” Matthew 6:8

There are lots of Scriptures I could have quoted about love and forgiveness. But even Christ was angry (money changers in the temple comes to mind) and frustrated. I can only lay out mercy and forgiveness. So if the one I forgive or have mercy towards tramples that, and accuses me of not being forgiving, I can only lay it out there for them. It is their choice to accept it. The person seeking forgiveness, and the person giving forgiveness, can both become better for the experience. Can or may are the key words in all of this. It is still a choice. It is the expression of free will. Today I chose to “not be like them.” I chose to walk away, because “your Father knows what you need before you ask Him.” He knows what this situation needs. I leave it fully in His hands. Fully. Because I cannot do this, any longer, or again.

Today, I am turning these chains, this history, this inheritance, this genetic thing, all of it, back over to God. And I am, once again, getting out of the way. The Lord will sort it out. I have faith! I hate that I keep allowing this to happen to me. And I am so thankful my Lord and God is so patient with me. The proverbial God Box was shut, and the same God Closet was closed. Again. I am still learning! Ha-Ha-Ha!

“…and a quieting of my anxieties…”

Ah, “dementialand.” Truly a place you do NOT want to visit if you can avoid it. But we have it living in our house. Don’t be jealous…

I don’t think anyone can be prepared for the absolute drain of caring for someone with Dementia…and there are so many types of dementia.

Dementia: “a chronic or persistent disorder of the mental processes caused by brain disease or injury and marked by memory disorders, personality changes, and impaired reasoning.”

What no one tells you, is that each dementing illness has its own set of symptoms and those symptoms also vary from person to person, family to family, moment to moment. There is nothing static about dementing illnesses. There is just disease progression; no disease regression, or cure.

I am blessed with both parents having a form of dementia. My parents divorced more than 40 years ago, and I find it ironic that they are both now suffering from dementing illnesses, even though they are 1000s of miles apart. Each often asks about the other one, which is also very ironic. (Family history is for another time). My dad is exhibiting symptoms slightly different from my mom. His dementia is sometimes based in a Parkinson’s origin, but his new doctor is disputing that. So his official diagnosis is now up in the air. (Another irony is his wife also has dementia. God has me totally cracking up with that ironic situation). My mom was diagnosed almost 10 years ago with Alzheimer’s, a particularly heinous form of dementia. There are studies emerging almost daily online which promise a cure or abatement of some sort. Once you dip your toe into the water of dementing illnesses, you learn far more than you ever thought there was to know, about neurological diseases, and you find yourself on all these web sites, being referred by other caregivers, touting new discoveries. I think some days it is just a form of hope, written down for others to see. Little strings of hope dangling from this miasma of neurological diseases. But then your loved one does something particularly annoying, or particularly difficult to deal with, or even funny, and those strings of hope are severed yet again.

I used to collect clocks and watches. My great-grandmother had this wonderful mantle clock and I was lucky enough to inherit it from her. I also inherited my grandmother’s mantle clock. And I have inherited watches, too. My husband can tell you that pocket watches do not go through the washer very well! All these clocks had a wonderful sound all their own. Their ticking and tocking through the day brought me such comfort. I am such a huge fan of the “Winchester” chimes. But now, I really hate clocks and watches, and paying attention to time passing. Why? Because my mom is obsessed. She looks at her watch all the time. She can barely see the watch, even though we bought her a new one for Christmas with a lit and enlarged face, so she can see it easier. She looks at clocks. We have, in our great room, a total of 5 clocks, and she wears her watch. Sigh. She is constantly commenting on time: “What time do you have? I don’t think my watch is working” or “Oh my word, it is 4:15! Can you believe it?” and “Oh my goodness, it is 4:30. Where does the time fly?” And then, “Oh, it is 4:45! It sure doesn’t seem like it.” Followed by, “Can you believe it is 5:00 already?” Yes. All day long. About every 15 minutes. On the drive home from my son’s house on Saturday, a drive that takes about 25 minutes, she remarked on the time every 5 or so minutes. And I am NOT exaggerating. At all. It is just one of the many oddities Alzheimer’s has brought to the forefront for my mom.

Another one that has provided hours of conversation, giggles, tears, and slamming doors, is make-up. Most specifically, eyebrows. Oh my word. I recall more than ten years ago, speaking with my stepdad on the phone and he all-of-a-sudden he yells, “Oh damn. I hate those eyebrows! She is throwing her eyebrow pencil at the mirror and starting over. She has already been in there an hour!!” That was over ten years ago. Eyebrows have always been an issue for mom. She used shave off all but a little puff of hair near the center and pencil in the rest. She now has random white hairs on her eyebrow area, but you cannot even see them. She also wears glasses, so they hide most of her eyebrows, as well. And that gives her free reign to put them wherever she feels they need to be, in that moment. Usually, they are large, dark, vibrant, and on her forehead. The darkness or severity also changes with the color. She bought a color of pencil that I told her was too dark, but she insisted, telling me, “I have always worn this color. It matches my hair.” The next day, her brows became these large, vibrant orange slashes on the forehead of a woman with predominantly white hair. Our family chuckled enough times over the next few days, until I could not take it any longer, and bought her the right color. Well, I bought blonde, but I wish they had a gray eyebrow pencil. Ha-Ha-Ha. A mistake I made was I also bought her some new eyeliner. Huge boo-boo. The next morning, she emerged with eyebrows using eyeliner, and they were a masterpiece. Ha-Ha-Ha. She still does not understand the two pencils are for different purposes (and the eyeliner is dark brown. Yeah). Every morning, mom walks around the corner into the “great room” to say, “Good morning, my children!” in her cheery, annoying morning voice, and already her earrings and watch are on, lipstick applied, and EYEBROWS! Me? I am barely awake, chugging coffee. This morning I woke at 5:00 am because the state bird of Alaska is back – the dreaded mosquito in its various forms. One or two found me this weekend and I was itching like mad. I finally got out of bed around 5:30 from the endless itching and quietly walked to the pantry and applied my Purification Essential Oil to the bites (totally removes the itching) and then I started the coffee. I sat down to check Twitter and Facebook, and out walks mom. Sigh. “Good morning, my children!” Fully prepared for her day in her pjs, robe, socks, eyebrows, lipstick, watch, and earrings. And it was barely 6:10 am.

There are so many aspects to this disease that bring moments of utter clarity and joy. We have times where we are just laughing. And sometimes it is over innocuous things like a certain brand of Depends! We can laugh about our wrinkles and the desire for a milkshake in a random moment. We laugh at the dog’s antics. We joke about her not hearing things. We tease her about “climbing the mountain” and getting into bed each night. Her amazing hugs and, “Goodnight sweetheart.” And we relish those moments. This weekend was filled with all those other moments. And mom’s clarity of thought is becoming more and more diminished. In the dementia community, we realize these phases are sort of milestones or plateaus. Only they are not upward plateaus, but downward spirals that end at a certain point, until the next phase begins. And I believe these plateaus are points our loved ones reach, in a sort of negative way, and they never go back up a step. Never. We may have lucid moments, but we have to lessen our expectations, as they sink further into their own minds. This weekend was a space of two days in which Mom fell deeper and deeper into Alzheimer’s. Her world is becoming simpler and closer to home. She is singular in thought and on Saturday, she took 2 1/2 hours to get dressed. She changed her clothes twice. Her eyebrows, eyeliner, blush, lipstick was applied. She was dressed inappropriately for the weather, but was determined to wear what she wanted. We attended an open house for an amazing agency that has helped us so much, and she hated it. She wanted to leave. She was rude and pushy and did not want to be there. We left, after less than a an half hour (after taking so long to get dressed) and she was happier in the car, getting a cup of English Toffee coffee, and driving to my son’s house. It was so stressful. And after we had dinner, she was looking for her purse and she wanted to go home. Sigh. And then checking the time issue I mentioned above. Every. Five. Minutes. Sigh. (I sigh these days, a lot).

Mom is confused easily. And one of the interesting things is what amuses her. You can give her the simplest objects and they can keep her busy for hours. We are transitioning to these med packs, exactly as the ones above. It is truly going to change our lives. We were given a sample to bring home, filled with M&M candies. Mom literally ready every box. She turned it over and over. It kept her occupied for more than 45 minutes. And when I went to pick it up, she asked me why I was taking it from her. I told her it was a sample to show how her new medications would come. She did not seem to care for that, she wanted the M&Ms inside! Ha-Ha-Ha. I told her it was a sample and I had no idea how old the candy was. She was so disappointed. She then proceeded to fold and flatten the pharmacy bag it came in; refold it; flatten it; and then opened it and started over again. For over 1/2 an hour. I was told about a woman whose father-in-law who lived in a  memory home. They used to ask him to help fold wash cloths in a large basket. He would fold them all and stack them up. They would take them from him, thanking him for his help, and about 30 minutes later, bring him back the same basket with all the wash cloths in disarray, to fold them all over again. He had no idea the basket was given to person after person, all day long. And it gave me an idea. I will bring out that sample packet again later today. We will see if it does the same thing.

I am having a hard time adjusting to this newest phase. My oldest son surprised me with a visit this morning. Mom did not even acknowledge his presence, neither did she even look at us. She snored so loud we both quickly looked over at her, but it did not even phase her. She was still asleep. And she didn’t notice when he left, and doesn’t recall he was ever here. She is still on the couch in her pjs, watching Steve Harvey do his thing. I’m doing laundry and blogging. She never notices when I come and go, nor what I am doing. She is awake – asleep – awake. Not motivated to do much of anything. And this is the backside of taking a step onto that lower plateau. It exhausts her, adapting to her new reality. Her world contracted again. And I am sad. Very sad. I can do nothing. And sadly enough, I enjoy these moments of her just snoozing, waking, and snoozing. She is much happier and not snapping my head off or asking the time. Ha-Ha-Ha. We sit here in companionship, adjusting to this new, lower plateau.

Just be prepared, when you enter this thing called Dementia. It is a journey. It is not an event. It changes literally everything about your life, as a caregiver. It changes the world of the person suffering from it. And you become more than you were before you took this on, and you become much less, at the same time. You learned to “step to the left” and not let all the moments that are horrid undo you. You also learn to take lots of deep breaths and just move on. You get some wonderful hugs and laughs and giggles. But you also get the time with your loved one, helping them transition to that last stage, where they say goodbye for the last time. And that, my friend, is a blessing.

A Caregiver’s Prayer

Dear Lord, help me better understand
and believe I can do what you ask me to do.

Forgive me for the times, even now,
when I question your judgment.

As I go about the many daily tasks of caregiving, give me energy.

As I watch my mom oh-so-slowly walk
across the room, give me strength.

As I answer her repeated question
just one more time, give me patience.

As I look for solutions to whatever
is the most recent concern, give me wisdom.

As I reminisce with her about the
“good old days,” give me a moment of laughter.

As I get to know my loved one in a new way,
seeing both her strength and frailty, give me joy.

As I sit beside my loved mom’s bed waiting
for her pain medication to take effect,
give me comfort.

Lighten my burden, answer my prayer,
and give me the strength to do what
so often seems impossible.

Give me a quiet place to rest when I need it
and a quieting of my anxieties when I’m there.

Change my attitude from a tired,
frustrated, and angry caregiver
to the loving and compassionate
one I want to be.

Remain my constant companion as I face
the challenges of caregiving
and when my job is through
and it’s time for me to let go,
help me remember she is leaving my loving arms to enter your eternal embrace.

Amen.

 

 

 

“No more monkeys….”

I had a rough, rough night last night. My youngest son was rushed to the ER on order of his Chief (he is a fire fighter) and I rushed out to meet them there. He couldn’t breathe. It scared me. We were there for about 4 hours. We learned so much. And he was given breathing treatments, medication, and x-rays. It was a severe asthma attack. We were prepared for bronchitis (because both my mom and I have had it recently) and even pneumonia, but not asthma! We were told that you never outgrow asthma. If you have had it as a child, you will always have it. Once you have had an asthmatic episode, you will always have sensitive airways. I had no idea. (He had asthma as a child, but has had no episodes in more than 10 years. Our previous pediatrician told us he had outgrown it). The staff were shocked he did not have an inhaler at home for emergencies! We never knew we needed one. The respiratory therapist was amazing. The staff was so kind. If we had not been there under those circumstances, I would have enjoyed it! Ha-Ha-Ha.

This was the first time I experienced being a parent in this situation, and yet, I was just an observer. My son is legally an adult, even though he still lives at home. And for the first time in his life, and in my life as his mom all these years, no one spoke directly to me. I was on the sidelines. And it was the weirdest feeling in the world. And this is my last child. I was proud of how he conducted himself, and how he was able to negotiate his healthcare on his own. But it was hard, not to jump in and take over. Due to HIPAA laws and the fact that he is over 18, they technically could not directly address me. And that was weird, too. His fellow fire fighter was able to provide more information for the triage nurse than I was. And that was so weird, too. I came to realize he has a life outside of me and our small family. I saw my son as a man last night. Proud and devastated at the same time.

And I realized, with overwhelming clarity, that raising my last child was over. He can still learn along the way. He can still grow up to be a wonderful young man. He can still be taught life skills. But my job of helping to develop him as a person, well, is pretty much done. He is who he is. He was even approved for his own health insurance last night. They did not even ask me a single question. They only spoke to him. He was the only person to sign anything. While we drove to get his prescription, we discussed the fact that he now was truly his own person, with his own insurance, separate from his dad and me. When we got there, the pharmacist only spoke to my son, not to me. He set up his own account, with his own phone number, and his sole reference to his parents? His address. I was profoundly moved. I mean, you have these little people around you for so long. And some days, as a mom to young kids, the only time I had privacy was when I was going to the bathroom. (Even then, I was given notes slid under the door. I think they knew I was hiding. Ha-Ha-Ha). And you think you have so many years stretching ahead of you. You think it is endless, amidst the piles of laundry and runny noses. And last night, I realized that journey with our youngest child, was over. It was a pivotal moment for me.

And so we move on to the next phase, I guess. All adults. No shenanigans going on with toys and noise and dirt and chaos. We are a household of adults. Such a weird thing to wrap your head around. I mean, you wake up each day and deal with each day as it comes. And this morning, I realized everything had changed. My last baby is a grown up. Wow.