About kaiserswest

A wife and mother to 3 amazing sons, and grandma to 5 (and counting) beautiful grandchildren. We currently have my mom living with us, as she completes her Alzheimer’s journey. 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!

“…temple of infinitely greater value.”

Those who know me well know we have moved – a lot. As a kid, I attended 3 elementary schools, a junior high and 1 high school – in different counties. Sigh. And that does not count the houses we moved around in, still staying in the same school district. From my birth until I moved out on my own after high school, we had lived in 7 homes. And since I moved out and went to college, going through roommates as they married, and then my husband and I moving around…I have lived in more than 40 places in my lifetime. Crazy as that sounds. My husband and I have been married 34 years and in that time we have lived in 10 homes. Can I say that I hate moving? I really hate it. And this house, when we were in the process of purchasing it, I nick-named it my “casket house” because I plan to move out of here in a box. A pine box. I cannot even fathom the idea of packing things up and going anywhere else. Truly.

This past Friday, we had a 7.2 earthquake here in Alaska. And five minutes later, 5 miles apart, a second one at 7.0 – so they say. All I can attest to is that it is, by far, the strongest earthquake I have experienced in my lifetime. And I grew up in Southern California. This was far worse than any I lived through there. The shaking and movement of the earth is so different. But this time, I did not even run around. I sat at my desk, as I was in the process of paying bills at the time it struck. I sat there, hanging on to my computer and a rather large statue of St. Rita I own. The artist who made it was a friend of ours and I have owned this statue for many years. This statue is about 3-feet tall and very heavy, made of plaster. Anyway, I clung to this statue and was praying out loud – “Lord, please stop this. Lord, please protect us. Lord, please stop the earth from shaking. Lord, forgive me my sins. St. Rita intercede for us!!!” On and on I lamented. It really seemed like an hour, but they say it was no longer than a minute or so. I could hear crashing sounds in the house as things fell and broke. As it slowed, and I was sure St. Rita was safe, I ran down the hallway to check on my slumbering son to be sure he and the dog were okay. The power flickered and went out. This was 8:30am. In Alaska, in November, it is pitch black at 8:30 in the morning. So I used my phone’s flashlight, as we made our way around the house, assessing damage.

The biggest loss was to a crystal bell collection I had. Over the years, I had quite a collection. But as we had kids, and their friends, we lost bell after bell to one accident or another. It was down to just a few. But one was my grandmother’s from New Zealand, one was my mom’s, and the smallest one was mine, received as a wedding gift. They fell. Hard. And shattered in our bathtub and all over my bathroom floor. I lost them all. And in the kitchen, my mom’s ginormous crystal vase fell off the top of the refrigerator. I thought it had shattered. I was so sad. It was older than me. And it was high quality crystal. But instead, the little pieces all over the floor were the crystal squares I used to stuff it to hold the lavender branches in place (decorative plastic, clear, tiny squares used in floral decoration). The other disaster was a bottle of walnut oil had tipped over and was slowly dripping between the stove and refrigerator. The dog was quick to help clean it up! LOL!

Oh, I found a 12-year-old bottle of Scotch had fallen, head first, into the trash can in the pantry but was safe; a few essential oil bottles toppled; some things in our linen closet fell to lower shelves; dishes in cupboards fallen over. But the biggest mess was sweeping up the glass and mopping up the oil. It was nothing. We were completely cleaned up in less than an hour. During that time we were in complete darkness. And the house started to get cold. Hot coffee had already been brewed, so we sat and drank hot coffee. It was unnerving to feel the many aftershocks. There have been, quite literally, over 1500 measurable aftershocks. Some have been in the 4s and 5s. It keeps you on edge. But all in all, we, personally, came through this event unscathed. But our state was not so lucky. Roads. bridges, stores, homes were left in heaps and piles of ruin and mess. The clean up will take months. Our new governor was sworn in today, but the biggest news is the highway was moving. We only have one main highway between Anchorage and the Palmer/Wasilla area and thousands upon thousands of people use it every day. And part of it was missing and some of the bridges and on/off ramps fell off. Seriously. They fell off. There are holes in roads that are wider than my house.

We felt so blessed, and so on Saturday, we met with some dear friends for coffee, catching up (including hugs and lamenting over the damages, and thanking the little restaurant we were in for being open!!), and then we chose to go home and decorate for Christmas. Our kids and grandkids had far more damage to their home, losing light fixtures and their refrigerator (luckily we do live in Alaska and food can just be put out in the snow) and lots of other things. More importantly, their nerves were frayed, and so they came over to decorate our tree and let the kids run around and have a giggling time at grandma and grandpa’s house. It was heaven. Everyone had a short escape into normalcy, ignoring the details of the disaster facing us all. Decisions to be made; actions to be taken; things to repair and clean up. But for a couple of hours, kids running around grandma and grandpa’s house, climbing step ladders and finding some Christmas Joy.

Do I care all the ornaments are in the range of where a 5- and 7-year-old can hang them? I could care less. Blank spots are actually a reminder of who helped decorate my tree and I have found myself just smiling at how some ornaments are bunched together, next to a hole where there are none. It brings me more joy and peace, at a time when we all need it. The fact that this year we had planned to use all our old ornaments was perfect because my grandchildren hung ornaments their dads had once helped me hang up. How cool is that? We laughed a lot. Their dad, our oldest son, played pranks on me, by helping his son hide matchbox cars in the branches. They thought they were so funny. LOL. And we let them play with our unbreakable Nativity sets. It was so fun. It is the sort of holiday afternoon my husband and I fantasized about when we moved up here, to be closer to our son and his family. My husband remarked that out of a disaster like this earthquake, came the blessing of grandchildren’s laughter, joy, and boundless energy. We are blessed.

We hunted and we hunted for my international Santa collection. We wanted our grandkids to see them all. We tore apart boxes in our garage even today. We cannot find it anywhere. Thanks be to God I save all my Jim Shore Santas in their boxes. Because I have all but one of those. I am missing a Jim Shore collectible a friend gave me. Ironically, I have the box, but not the statue that should be in it. And that is where I come back around to moving. I have realized I am missing quite a few things that I have had over the past 34 years of marriage. And today we tore apart the garage, looking and looking, but not finding. And it made my heart contract just a little bit. My sons used to tease me about my Santa collection. But for me, it was a reaffirmation of the gift of Christ. His presence in our lives in the lives of His saints. Trust me; St. Nicolas has interceded for us more than once on this journey of parenthood!! And I lament that I cannot share them with my grandchildren. But that is me; not them.

It is one of the reasons I am done moving. Parts of my life are scattered across three states, in boxes lost along the way. And I am done with it. But on the other hand, I have learned to be less attached to my things. Am I sad about the last of my crystal bells? Yes, I am. Am I sad about my Santa collection? Very much so. But I have friends who lost far more in the mere minutes of the earth shaking this past Friday. Some friends are actually just throwing entire rooms full of broken things away. Several are planning to vacate the state, because this undid their nerves. So many are still sweeping, sorting, throwing broken parts of their lives away. And they are done. Still others are seeking emotional/psychological counseling, because they are having a hard time handling this. And I sit here, looking at my beautiful tree, and I count my blessings. I know the Lord has watched over every step we have taken in our lives, bringing us to live in this exact spot. And He watched over us on Friday, and He watches over us every moment. Maybe someone else needed my Santas in their life. Maybe I need to be detached from my things so I can help others with perspective and remain calm in the chaos. All I know is on Friday, while the earth shook quite hard, I felt peace; I felt safe; I felt loved; and I felt God in control – not me. And now we clean up the mess, and we move forward. Without some of our things, whether they are shattered on the floor or lost in a U-Haul truck somewhere across America.

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“People forget years and remember moments.”

The hubs and I decided to go meet our new granddaughter, on a whim. And so we flew out of state, in time to join the millions of other travelers over the Thanksgiving Holiday here in the USA, for 7 days and 6 nights with our son and his expanded family. My son’s in-laws graciously set up their camper/trailer in our son’s backyard for us to sleep in. It was perfect. We shared some amazing moments with our grandchildren. Our older grand daughters wanted to camp out with us. It was heaven. We got to kiss them goodnight and tuck them in bed each night. And then we had morning cuddles in bed with them, giggling and chatting. It was every grandparent’s dream come true.

We had some incredible conversations with friends we had not seen in ages. We ate some wonderful food. We cuddled granddaughters, sang songs, decorated Christmas cookies, and watched fun movies together. It was just what we needed.

I am not sure how to explain this, but being free to just be me, it was pretty amazing. I did not have to worry about mom, not one moment. I was sent some photos and texts while I was away. She fell, wearing a pair of heels I thought I had gotten rid of. But she fell, and laid on the floor laughing about her clumsiness. She was not hurt, so that was good. And another photo of her after a day of bathing and washing her hair, and getting her hair styled. She looked so happy. She is, apparently, the darling of the assisted living home. And she is happy. And she is safe. And clean. And fed. And warm. All the things I wanted for her, she has.

I got to spend time being a grandma. I was able to sit and talk to my granddaughters. I was able to hug on them, and laugh with them, and enjoy being with my son and daughter-in-law (whom we miss horribly) without worrying about my mom. I was able to mother my son and daughter-in-law, just a little, without also having to mother my own mom. While we were there, I was sharing events we had experienced while living in Alaska, with friends who have never been there. It startled me because I realized that I had, indeed, had a life in Alaska before my mom. Before I was confined by the horrible disease of Alzheimer’s. Trust me, when your parent is diagnosed, you are diagnosed. You just don’t know it, yet. It affects every person who is in contact with an Alzheimer’s patient. Every single person. And you lose the life you had, along with the person who is losing their life to this horrible disease.

While we were away, I waited. Every day we were gone, I waited for that burden of guilt to descend upon my shoulders and start crushing me. I waited for my stomach to roil and burn, and completely disable me. And guess what? It didn’t happen. I did not feel 3 inches shorter anymore, ladened down with the guilt of going on a vacation without my mom, or the burden of caring for her, or the fact that I placed her in an assisted living home. I am not guilty anymore. Why? Because I was able to breathe in and out, without worrying. I was able to have a life apart from my mom. I was able to be present, truly present, to who I was with. My moments were totally mine. Mom was safely cared for. It was not by me, but I trust who has her. I know she is better off than she was with me. One of the reasons I know that is because all the reports tell me she is the life of the party and so much fun. My mom has always been known to be fun to be around. When my parents divorced when I was in my early 20s, their friends all stayed friends with my mom. Even my dad’s relatives stayed in contact with my mom (my dad’s aunt and uncle used to vacation with my mom and her second husband!!!). But not in the last few years, and especially not when she lived with me. Friends had all fallen away. She was so lost and confused, and always angry. I think she is happier now, so she can have fun again. What a gift that is!!!

And now it is Christmastime. The time when we bake, decorate, and celebrate the Birth of Christ. When families gather together and share the love of the season. This year will be different, without mom living here. I am not sure what exactly we will do for Christmas Day, yet. But it will require driving. We won’t ever have her stay with us overnight, because that would so confuse her. We have not removed her for a visit, from the assisted living home, yet. We are letting her get herself established there. But already I am more excited about sharing the season. There are no nagging worries hanging over me. Little concerns here and there, but we will be less burdened this year. And if that sounds callous, I apologize. But I have learned some nuggets of wisdom along the way. Sometimes we just are not capable of things we thought we were. Sometimes doing it all ourselves is just not in our best interests. Sometimes the Lord allows us to flounder just a little bit, so we can gain some perspective.

And now we are back, our spirits refreshed, and with a new blanket of snow around us. We came to see that we belong in the great north. We love the seasons, we love the smaller population, and we love the pace of life. We missed our peace and our place. But we also discovered lifelong friends are a treasure and we love them even more, the older we get. And we love our family ties, as stretched as they may be across the miles. We felt so very blessed. And that perspective is a good thing.

“…I can’t remember whose it is anymore…”

I have been pondering this entire dementia thing. As far as the type of dementia in our family, we have been dealing with Alzheimer’s and mom is entering the final stages. It has been a long, long year and some months. And on other planes, it has been a whirlwind. We learned so much about so many things.

I may anger some of you when I talk about this, but there is an ugly side to this disease. The care givers are on the receiving end of so much pressure and grief. When you choose to become a parent, you have a child, whether naturally or perhaps adoption. However you do it, you become a parent. And there is so much responsibility that comes with it, but it sort of just becomes a natural thing to do. When you take on the responsibility of caring for a loved one with a dementing illness, it differs vastly from becoming a parent.

When you choose to care for your loved one, in your home (or theirs), you take on a myriad of responsibilities and have to make so many choices and decisions, it can become daunting. It can be overwhelming. And it can make you sick, doubt your sanity, and cause you to lose contact with friends and a life outside of caregiving.

They (the people who teach and try to prepare us for the act of caregiving) will use the term, “anchor.” You become the anchor in the world of the person with Alzheimer’s. Your days revolve around their needs. When you step away, their anchor is gone and it is difficult for others to care for them. When I would run to the grocery store without mom, I would return a mere hour later, and to her I had been gone the entire day, or even longer. When she was in a rage one day, she said to me, “What do you care? You are never here! You are gone all the time and I am alone all day long.” Her reality was so far removed from the truth, but I had no way to convince her otherwise. I had no way to share with her that she could not leave me alone to even go to the bathroom or to shower. That when I left the room for more than 10 minutes, she was up, calling my name, looking for me. Every day.

When I had some wonderfully lucid moments with my mom over a year ago, before Alzheimer’s completely took her over, we had deep and engaging conversations. Our conversations centered around what she wanted, and how she wanted, to spend the end of her life. We chose to have my husband and I jointly share the responsibilities of POA for both medical and financial decisions. And mom opted to have a DNR in place. She does not want her life prolonged, especially if she cannot be emotionally or psychologically present. Everything was notarized and copies were given to the local first responders, as well as local urgent care and emergency rooms. We all felt very comfortable with our decisions. And then, well, then Alzheimer’s started to take over.

Everyone will tell you all sorts of platitudes about how the person with Alzheimer’s is suffering, and if you think you (the caregiver) have it bad, they have it worse. That all of us caregivers need to remember how hard life is for them. That we need to subsume our lives to care for theirs. Well, here is where I will annoy some of my readers. I disagree with this attitude, with this way of dealing with our loved ones.

And I realized that my will, my pain, my life had been subsumed completely into my mom and Alzheimer’s. Her suffering was my suffering. Her pain, her discomfort, her desires, became mine. I believe that Alzheimer’s is one of the most self-centered diseases there is. It all revolves around them. There are moments, yes, when they are fearful and confused. But I believe these moments are only in the outer stages of this disease. By the time the caregiver is nearly bereft of their own life, being totally subsumed into their loved one’s life, the disease has progressed enough that it has become completely self-centered. The loved one only cares about what is happening in their mind, in their immediate world. And they have no knowledge or perception of the real world all around them. That is when caregiving can become a hazard to the caregiver – emotionally and physically.

According to statistics from the Alzheimer’s Association, over 2/3 of caregivers report substantial emotional, physical, and financial difficulties, versus those who care for loved ones with other illnesses. Nationwide, caregivers provide over 18.4 billion hours of caregiving per year, at a value of over $232 BILLION dollars, which is absorbed by the loved one’s families – for Alzheimer’s disease. It is projected that every 65.6 seconds, someone is diagnosed with Alzheimer’s, and that 1 in 3 seniors dies from complications due to Alzheimer’s disease. It is overwhelming our system of medical care, financial aid, and our caregiving families. It is an epidemic. Between 2000 and 2015, deaths from heart disease have decreased by 11%, while deaths from Alzheimer’s have increased 123%. Ponder that for a moment. Oh, and these figures are just for the United States. They do not reflect the numbers worldwide.

And so, as unpopular as this is to say, burnout is real. We caregivers get sick. Either emotionally or physically, and sometimes both. There are those who guilt trip those of us who just cannot continue down the caregiver path. They say it is cruel to place a confused loved one into a facility. However, I think it is cruel to be selfish, on the one hand, to think you are the only person who can care for a family member. Yes, there are horror stories of people in wheelchairs in hallways, drooling onto their shirts. People with bed sores because they are not cared for. There are those who die of starvation and other causes of neglect. There are horrific places we warehouse our senior population. I am not saying otherwise. But there are some amazing people who provide care, in some wonderful places, when we just cannot manage it another day. It takes perseverance and determination to find the right place for our loved ones. And we have to do this search while we are sick and tired ourselves. It is not an easy task.

One of the things I struggle with, still, is the guilt. Could I have not held out a little longer? Could I have not subsumed my life for awhile longer? Could I have not provided that warm, safe, loving, family home awhile longer for my mom? Well, personally, perhaps I could have. I will say this – the issues that cost me literally thousands of dollars to discover were all from stress, have pretty much resolved themselves. I have twinges and days, but for the most part, I am much better. I am finally getting a full night’s sleep. I am eating without being sick. I am not doubled over in pain. Nor am I hiding in my closet, where I could fall apart without an audience. And I actually went somewhere last night, to a group gathering I used to enjoy regularly. And it was so nice to not have to hurry home from worry over mom being out too late, or me not being home to put her to bed.

We had this wonderful tradition develop while she lived with us. Each night, I would lay out her pjs and fresh Depends. Then I would leave her to get dressed. Some nights were ugly because she did not want to change her Depends. She would even hide her clean Depends because changing them was beyond her. Other nights, she was compliant and dressed and got herself ready for bed. I would then help her into bed, making sure her electric blanket was plugged in and her bed was nice and toasty. She would climb into bed and hug my neck for all she was worth. She would tell me over and over how much she loved me and how thankful she was that she lived with me. She told me more than once that I was her best friend, and that I was, in fact, her whole life. In the 18 months she lived with us, we only missed one night of that routine. It was a night when she told me she hated living with me, she wanted to go home, and she wanted her things – her keys, her car, her furniture, her home – back again. And she wanted nothing to do with me. She was angry. Really, really angry. And I cried as I got into bed, realizing we could not continue like this. Because the bad moments were far out-numbering the good ones. My mom did not know where she was, what day it was, and often, even who I was. And so, after prayerful consideration, and full consultation with our entire family, we opted to place my mom in an Assisted Living facility.

I get daily texts from the Assisted Living home. Mom is adjusting and her days are happy. She bathed when asked. She is having 3 meals a day. She is chatting her days away with a couple of the other ladies who live there. She is finding joy in being on her own. And I am beginning to find me, again. I have no idea what I am supposed to be doing these days. I have lived caring for someone for the past 34 years. And now I have no one who needs me. Even though my mom does not live with me, there are still decisions I have to make. Things I have to put into place. Ways I am playing God with her life. And it weighs heavily. The day-to-day of it is gone. But the responsibility is still there. Not as heavy in some ways, but more profound in others. This caregiving role is so nuanced and profound. We struggle to do it to the best that is in us. It manifests itself in many different ways. Each family is unique, each interpersonal relationship is unique. This disease creates and destroys relationships, and the health of those with it, and who are involved with it. Sometimes all we can do in a day is just breathe…

 

 

“…she sewed them on!”

We chose to orient our lives around the care of my mom. Almost 2 years ago, we started to look for a house and prepare to become homeowners again, in order to accommodate my mom. The home we had been living in was pretty small. And so, with mom in mind, we began house hunting. It was stressful, but we really wanted mom to have a nice place to spend her final days. We made “promises of the heart” about how mom wanted to end her days. We found the house we live in now and everything seemed to fall into place. We moved in with relative ease (as far as paperwork goes – the moving day wore us all out!). We lived in the house for awhile and then I flew to CA to pick up my mom.

We packed mom up in about 8 suitcases. It was chaotic but kind of fun, too. Mom arrived in Alaska to winds and the start of autumn. She froze. And she was not happy about it. But we adjusted! A popular saying here is, “There is no bad weather, just bad equipment.” And we all had to adapt to my mom living here. Because no one is truly prepared to be a caregiver to a parent. I don’t care what you say, no one is ever, truly, prepared.

My daughter-in-law and I attended some courses about Alzheimer’s and dementia, and this thing called Medicaid Waiver. We attended the course months before mom arrived. And I thought I totally knew what I was doing. And then I took a couple of online courses right about the time mom moved in. One of them, The Savvy Caregiver, was so good. It gave me coping skills, and ideas about how to deal with many of the symptoms of Alzheimer’s. And I loved having other caregivers to talk with, and a hot line to call in on a weekly basis. But when I would hang up from our help line and walk back out into the living room, reality would slap me between the eyes. Ha-Ha-Ha.

It reminds me of taking driving lessons. In a classroom. And then, for the second part of the class, you have to get behind the wheel. And that is a completely different ballgame. Videos and guest speakers are one thing – an angry mom who cannot understand why she needs to shower, even if it has been more than a week and you have been tracing down this strange odor in the house; reality is a far different bedfellow. And we try; we adapt. We persevere. Until we just can’t do it anymore.

My mom and I had not lived under the same roof in over 34 years. So many people questioned me when I told them we were bringing my mom to live with us. They remembered, better than I did, the many ways in which my mom and I did not get along. But when I needed my mom the most, she was by my side. She comforted me when I had my heart broken as a teen. She supported me and accepted my husband with open arms when we decided to be married. She has always been behind my husband and I, even if she disagreed with us. But we have not been that sort of family where my kids long to hang out at grandma’s house, baking cookies. My mom was not that kind of mom, or grandmother.

But things change when one of your family members becomes incapacitated. Your memory of your life as a child with that parent completely disappears. LOL. You have a clean slate, and you think there is nothing you would not do, to keep your parent safe, and healthy. But the issue with Alzheimer’s is that you truly cannot enter into their world. Because their world is all in their head. And I cannot join her there. I can attempt to agree, to side-step issues, to “go along to get along.” Because learning, correcting, adjusting just does not happen on their side. Because they are incapable. And silly me, I kept trying to drag mom back to reality. Mom does not live in reality – she lives in her disease. And there is the rub. We have two very different realities at play, in the same house, at the same time.

Some people who develop these dementing diseases become closed off, silent, and very malleable. There are others who become uninhibited, no social stops at all, and a verbal sort of diarrhea takes over. And with some we get to add in unreasonable anger and frustration. And we, the caregiver, are scrambling to try and enact all the platitudes we received from earnest people, trying to prepare us for this act of caregiving. And I fell extremely short.

When mom first arrived, her disease was moderate. It was more like she would forget if we had breakfast yet, or what time it was, or where we were headed off to. But she was not truly handicapped in the sense that she still bathed, put on her make up, wore cute outfits, and loved putting on matching jewelry. We could spend hours shopping for clothes and giggling. We went to lunch with friends. We attended events together. We laughed a lot, in between the hard moments. And there were many hard moments. But they faded in light of the generally happy days, We chose to pursue cancer treatments that perhaps we should not have, but at the time, we felt mom needed to be the healthiest she could be, physically, because we knew her mind was declining. Eventually, her mind deteriorated to the point that taking medications for Alzheimer’s seemed rather silly, a waste of money, and too much pressure on her body to process all the chemicals. The benefits were just not that apparent any longer. So, on the advice of her doctor, we stopped all medications except an anti-depressant and a daily vitamin. And that is when the disease really increased in severity and progression. And that is when things started to fall apart.

There were days when the process of putting on clothes was my major accomplishment for the entire day. The fact I could put together meals 3 times a day was heroic some days. My mom’s decline gained momentum and we all knew this ugly disease was winning. And the thing about diseases of the mind is that they affect every person around the one who is ill. It was like we all had Alzheimer’s and our family was branded. People approach you with concern, but are not sure how to offer help. They are not sure what is going on; they only know life is hard. My safe space became my closet. I would go into the closet and just weep. Mom could not find me there. She always forgot we had a bathroom and walk-in closet in our room and always thought the hall bathroom was the sole bathroom in the house. So I could hide in there. And I could fall apart in there, away from the moments of screaming and yelling and frustration. My mom knows every single button to push. And like I heard on “Last Man Standing” the other night, “Your mom pushes all your buttons because she is the one who sewed them on!” Boy, is that ever accurate. And my relationship with my mother was deteriorating rapidly.

There is something odd that is common among the patients of the various dementing illnesses and that centers around personal hygiene. They lose any sort of common sense when it comes to toileting. Mom’s doctor told me it was like potty training – in reverse. Well, I raised three kids, and I have 6 grandchildren. I have never, and I mean never, seen the spread of poo and germs and just flat-out refusal to get yourself clean, as I have with my mom and her descent into Alzheimer’s. The bathroom in the hallway became a place only she used. And trying to get her to use soap was the ultimate battle. Then bathing. Getting her into a shower was like the last battle of Armageddon. It was ugly, and messy, and the ultimate in stress. If I could convince her to shower, I came out of that bathroom as wet as she was – only fully dressed. And it would take more than an hour. And it only happened every few WEEKS. Why, you may ask, was it only every few weeks? Because it was that hard and that bad on all of us that it just was not worth the effort.

And so our days escalated to ones of extreme inability on my mom’s part to be present in the here and now. She was sleeping her days away. But if I left the room, she would follow me. It reminded me of the days when I would have little fingers and notes and toys shoved under the door of the bathroom, when my kids were little. It is one of the reasons my closet became my haven. And after talking to my Care Coordinator (I claim her as mine because she is an incredible woman, with so much sage advice to share. She kept me sane through all of this) I was encouraged to look at Assisted Living, as an alternative. And there is where I found relief. I had to face the fact that perhaps mom and I were not good for each other. Maybe being her caregiver was NOT what was in the best interests of either of us, nor of our family. I came to realize we all needed professional intervention.

And so, we found a place. And in a relatively short amount of time, we moved my mom out of the home we bought with her in mind, to a professionally run Assisted Living home. They keep me up to date with daily text messages. They are now trying to get her to bathe, and yesterday reported that she refused to shower. They are going to tackle it again today. I wished them luck! They are telling her they are acting on doctor’s orders. I applaud that, and I hope it works. I tried that tact and she did not care what the doctor ordered. I finally had to just tell her she smelled and was dirty. I hated doing it, but it struck a cord with her pride and is how I won that last battle. And trust me, the entire thing about cleanliness, toileting, and dressing, is the battle of Alzheimer’s. I have theories about that, but that is for another post!

And so we are preparing for the new reality. The house seems empty. And I realize how much I let slide, just taking care of mom. There are dust bunnies that almost deserve their own zip code. There are cupboards screaming to be organized that I only had the time to stuff things into. The hall bathroom needs a do-over. My carpets need to be cleaned (never clean them until after there is no one with Alzheimer’s living with you. Like how you wait for that puppy to be potty trained before you clean the carpets?? Yeah; that). I have things I want to bake and things I want to cook. Spending time with my husband. Because trust me, that man earned some major jewels for his heavenly crown, having his mother-in-law live with him! And most of all, I want the “me” back I had worked so hard to become, in spite of how I was raised and the experiences I had as a kid. I wanted the soft, loving, me back. I am looking forward to my Advent Psalter group, and journaling again. I already moved furniture around, making plans for where we put the Christmas tree. And this weekend, I may go visit my Mom, as a daughter. I look forward to just being her daughter, again.

 

 

“…What is this place? A boarding house???…”

Well, we did it. We moved my mom into a memory care home, or an assisted living home. We planned it so well. Ha-Ha-Ha! The idea was to have mom hang out with our grandchildren, and let them wear her out for the day, while we packed her up and moved her stuff into the AL home. (AL = Assisted Living). Because of scheduling conflicts, my son could not pick her up until after 2pm. But it worked out for the best, because I got mom to bathe. It was hell on wheels because she did not want to use the new bench we got her for the shower. We argued and argued, but I finally told her the doctor wanted us to get it for her, and we were all worried she would fall. Once we got her in there, she did well and enjoyed being able to sit while we sponge bathed her. When she tried to stand, she could not get up and clung to the chair, telling me how much she loved having it there for the support. Alzheimer’s is weird. It is so interesting to see how the brain rationalizes the parts that are missing and don’t compute.

That is a photo of mom’s new room. It is gorgeous. So much light – windows are on two walls – and it is so bright and pretty. We hauled all of her clothing up to her room, and we put everything away in the closet and drawers. I brought her bedding and made up the bed with things that were familiar to her. We arranged all her photos. I placed all her things in the bathroom (she got the master suite with its own bathroom and walk-in-closet) and on the dresser, so she would see her things right away. We then went to meet mom and our son for dinner. The “best laid plans,” as the saying goes. Ha-Ha-Ha.

Mom can be quite fun – and nice – when she is in the mood. And I guess the grandkids wore her out. Our son said she had a great time and they all enjoyed her company. We met at one of our favorite restaurants – and it is Greek and Italian. Yum! We had grape leaves for an appetizer with tzatziki sauce for dipping. My eggplant parmesan was so good! Dinner was nice, and we had a chance to sit and chat. Mom had difficulty eating her pasta, but she was happy. And tired. She asked us if we were taking her home and we said we were. As we walked out, she looks at my husband and says, “I don’t have any of my things at your place, do I?” He assured her she did not, and we chuckled at the fact we had just moved all of her things out! LOL! And she had no idea.

We loaded Mom into the car, in freezing, snowy weather, and drove her to her new home. She walked in like she had been there before, lying her way through (she does that to cover for things she cannot remember) saying how nice it was to see the gal working that night, how she missed her, etc. Then she looked around and said, “Where am I?” We told her she was home. She insisted she had never been there before. I handed her a key on one of those stretchy plastic bracelets and said, “This is now your home.” She looked at me and asked, “What is this place? A boarding house?” And I explained it was an Assisted Living home and she yelled, “I don’t need one of those places!” And it started to ramp up in intensity from there. I suggested we go upstairs to see her room. She said, “No. I do not live here and I will not live here.” We finally convinced her to ride the chair lift to the 2nd floor and she did. We walked her into her room and she saw all her things and got really, really, pissed off. “How dare you! You are very presumptuous to make decisions about my life without consulting me. I WILL NOT STAY HERE. I WILL NOT!” And she looked at me, with so much anger. The owner called and said that it would be better if we just left. And it was the hardest thing I have ever done. Hubby hugged her and told her he loved her. She was as stiff as a board and did not hug him back. I placed my hands on her shoulders and said, “Mom; I love you. And I hope you can learn to love it here. I will see you soon.” And then walked out. As I was making my way down the stairs, she was yelling, “How can you do this to me? I WILL NOT STAY HERE. I WILL NOT!” And then she started bawling. I put on my snow boots and jacket and walked out to her crying. It almost killed me.

The owner started texting me as we were making our way home in the snowy night. She said that mom had calmed down after I left. She was saying how beautiful her room was. The aide helped her into her pjs and mom was telling her, “I like toast and fruit for breakfast; I am a very light eater.” And then she went to bed. The owner texted me yesterday and said mom was enjoying the home, saying repeatedly how beautiful her room was and how beautiful the home was. She sat with the aide and one of the other ladies all day. She then said mom was going up and down on the chair lift, looking at her things in her room, and was being funny and sweet to everyone. The owner asked her if she would like a nice chair in her room. Mom said that she would like that, and so the owner told her they would bring up a nice chair and little table for her, so she could sit in her room and enjoy the views. She said mom was fitting in just fine and to relax. She also assured me that we had nothing to worry about, and that she would stay in contact with me every day, until we were both content that mom was happily adjusting. It really is like sending a toddler off to school for the first time. I barely slept that first night.

And you know, it is so hard to think mom is not here. I keep expecting her to walk into the living room. Her pills and cups are not in the kitchen. The bathroom doesn’t have appliances in it anymore. It is so quiet. And it feels like one of my kids moved out. But I also realized the tension level in the house has greatly diminished. My husband and I went out yesterday (even though there were so many travel advisories because of bad weather) and attended a dog show and then went to brunch – just the two of us. It was lovely. Weird to be alone, but so nice, too. We have missed our couple time, a lot.

I am looking forward to spending time with my hubby….we miss that. It is amazing how isolating being a caregiver truly is. We have not had time to spend together, let alone with friends. As the disease progressed, it made it harder for us to socialize. Mom does not do well with a lot of stimulation – it really wears her out. So we became more and more isolated at home. When we did take her with us, she would talk to everyone and anyone. She is very social. But the next day would be rough – she would be cranky and very tired, napping her day away. And so we ventured out less and less.

I am prayerful she will get the care she needs (the home has round-the-clock aides) and find some peace. Her health is my concern and I think she will allow professionals to care for her without such a struggle and all the fighting, and I can return to being her daughter. I can visit her from time to time, maybe doing lunch and mom/daughter things. I miss being a daughter.

“…take it from my hands…”

So today I am in a thoughtful mood. There are some days where you have so much activity coming up, that you sort of just stand there. You cannot move. For me, November is going to be busy. And filled with decision-making. And I tend to hold all that foreboding in my stomach. Ha-Ha-Ha. Which is why I get to have a very thorough, head-to-toe procedure this month. Joy.

We have chosen to place mom in a memory home. I cannot even describe the stomach upset this causes me. I feel like I am playing God with her life. I know I am not, but it feels like it. Mom and I had a very serious discussion when she first came to live with me. She had far more lucid hours in her day, back then. We were able to talk about Alzheimer’s and what it does to someone. How she wanted to be treated. What she did and did not want at the end of her life. After that discussion, we made decisions regarding end-of-life, DNRs, POA, and Guardianship. We were able to set things up the way she would want, and everything was signed and notarized, and in place. And now we are deeper and deeper down that rabbit hole, it is making sharing her desires much easier. I was able to scan and send her emergency requests to all the agencies in our area, so no matter who receives the 9-1-1 call, they will have everything about her at their fingertips. It gives us great peace of mind.

We met the owner and provider of the Memory Care Home yesterday. We had a lovely visit. My husband, bless him, went with me. We did not bring mom. The view is incredible, in that you can see all the way to the water, and the lights at night are glorious. It was quiet, clean, and seemed like a lovely place. I stood in the driveway, talking to my husband, and something just clunked into place. I realized that ball of stress in my tummy relaxed. Ha-Ha-Ha.

The sunshine and the snow were glorious. We had a significant amount of snow fall in just 24 hours – over 15″ in some spots. At my house, we got about 11″ in a night. And since that storm, we have had nothing but blue skies and glorious sunshine. It is very cold – it was a serious -5 on my deck yesterday morning. And as I was driving home from the Memory Home, it was a roaring 19 degrees! But my sunglasses were firmly in place and I just counted myself as blessed, while I drove the white valley. So so pretty.

And the scenery continues to blow me away, even after living here awhile. I am constantly saying to myself, “Wow. I get to live here. I am so blessed.” And I have searched for my comfort zone my entire life. And when I moved here, I just sighed. I knew I was home. The vastness and the abundant wildlife just feed my spirit. I was born in Southern California. I grew up being able to go to the end of the block and walk on the beach. Our home was little, but we were close to the beach! LOL! And I continued growing up in SoCal, but I hated the heat, the smog, the crowds. Always a long line for everything. But here, in the last frontier, you can breathe freely. And I discovered I absolutely adore winter. Do I like being cold? Not particularly. But I dress for the cold and can deal with it. I discovered scarfs…total scarf convert here! I wear them almost daily! Love love love! My favorite infinity scarf was made by my Daughter-in-law, and it is scrumptiously colored like the Aurora Borealis. I wear it as often as I can! The colors are stunning. And it is soft and cuddly.

Later this month, I will be moving my mom. And it will break my heart, but I know in my brain, it is the right thing to do. And shortly thereafter, we are off to meet our newest granddaughter. We are both so excited. We cannot wait to play with her and her sisters, and sit and visit with our son and daughter-in-law. What I am dreading is the weather. I am praying for cold and wind and rain. But I am expecting heat. And preparing for heat. I will have to readjust from snow and cold and Thanksgiving in snow to winds and desert and Thanksgiving in flip-flops and capris. Ha-Ha-Ha!

And mom will be adjusting to life in a Memory Home. November is a month of a lot of activity and decisions to be made. Depending upon my test results, even more decisions. And I am nervous and excited at the same time. The Lord definitely is in charge, because I am letting go and asking Him to take November and lead us in the way in which He wants us to go.

“…the plank in your own eye…”

The lenses through which we view our world are different for every person. And sometimes, like our annual eye exam, our prescription changes. My youngest son had his eyes examined yesterday and his vision has greatly improved. We were all so happy for him. My eyesight seems to have settled down and evened out a little bit. Thank goodness, because without glasses, I am legally blind. LOL. I have always been made fun of for the thickness of my lenses. I was so happy when they made the new compact lenses. And it has been a scientific miracle that allows me to see, to enjoy this beautiful world, and to read books – my singular joy in life. I read every, single night. Praise God for my glasses!

As all of us view what is in front of us, we have a tendency to peek over the shoulders of the guy next to us, trying to see what they see. Sort of like looking at someone else’s test paper in school. And trust me, nothing good ever comes from thinking you can copy someone else! And so it is with choices and decisions people make. Sometimes, from where someone else is standing, they look at you and completely disagree with your choices in life. But you see (no pun intended) they are not looking and seeing, using your eyes. They are looking with their own eyes, using their prescription for life. And my life is nothing like yours. You did not have my parents, lived where I lived, had the life experiences I have had, nor have the same choices to make within the framework that is my life. You look over my shoulder, and the view is so very different from where I sit. And please know, it would be the same for me – if I chose to look over your shoulder, and look at your test paper.

My mom, as those of you who have read my posts before, has late stage Alzheimer’s. She will be 89 next month. I took her to the monthly foot clinic at the doctor’s the other day. Getting back out onto the highway was quite something. There is always a stream of cars, and no one wants to let you merge. Well, my-late-stage-Alzheimer’s-mom proceeded to give me driving lessons. Ha-Ha. I reminded her that I got my driver’s license in 1973 and have been a successful driver for 45 years. Her reply? “That doesn’t make you an expert!” She barely took a breath as she explained how to successfully merge with traffic. My point is that from mom’s point of view, she knew better than I did how to drive and merge with traffic. She was seeing me drive, using her eyes, not mine. Side seat driver! Ha-Ha!

We all think we know best. Look at all the chaos in the world. We have taken our “selves” to such a level, we cannot see any other thing or way, but our way, our view. People are comfortable when we all stay in our prescribed lanes; on the tracks and in the direction expected of us. And when we veer off the tracks and head in a different direction, it can freak people out. They are out of their comfort zone now, because they cannot easily see over my shoulder; my test paper is blurred.

I recently chose to place my mom into a memory care facility. It is seriously the most difficult thing I have ever chosen to do. I veered off the track of the plan mom and I had made for her “end-of-life” experience. I have changed the end of her life. And it weighs on my heart. And so many people have opinions about it. To be honest, no one knows what dealing with a loved one with Alzheimer’s is really like if they do not live with you 24/7. Visiting a memory home is so stressful; yes, it is. But dealing with that person from the moment they wake until you tuck them safely into bed each night is a completely different ballgame, my friends. It truly is. Every need they have, you have to provide. One of the most horrible things someone can say to me is, “Oh, I know exactly what you mean. I saw that once.” Sigh. No clue. Or people who claim to be experts because they perhaps drove people to doctor’s appointments or did their laundry. And if you visit your loved one at a memory facility, that is a snippet of their day. A snippet. Not the day. And people seem to think telling me where I am making a mistake is okay, even though they do not wear my prescription, nor do they walk in my shoes. They are peeking over my shoulder, cheating their way to an opinion. And I am physically and emotionally reaching the end of my proverbial rope here.

Luke 6: 27-49

“But to you who are listening I say: Love your enemies, do good to those who hate you, bless those who curse you, pray for those who mistreat you. If someone slaps you on one cheek, turn to them the other also. If someone takes your coat, do not withhold your shirt from them. Give to everyone who asks you, and if anyone takes what belongs to you, do not demand it back. Do to others as you would have them do to you. “If you love those who love you, what credit is that to you? Even sinners love those who love them. And if you do good to those who are good to you, what credit is that to you? Even sinners do that. And if you lend to those from whom you expect repayment, what credit is that to you? Even sinners lend to sinners, expecting to be repaid in full. But love your enemies, do good to them, and lend to them without expecting to get anything back. Then your reward will be great, and you will be children of the Most High, because he is kind to the ungrateful and wicked. Be merciful, just as your Father is merciful. “Do not judge, and you will not be judged. Do not condemn, and you will not be condemned. Forgive, and you will be forgiven. Give, and it will be given to you. A good measure, pressed down, shaken together and running over, will be poured into your lap. For with the measure you use, it will be measured to you.” He also told them this parable: “Can the blind lead the blind? Will they not both fall into a pit? The student is not above the teacher, but everyone who is fully trained will be like their teacher. “Why do you look at the speck of sawdust in your brother’s eye and pay no attention to the plank in your own eye? How can you say to your brother, ‘Brother, let me take the speck out of your eye,’ when you yourself fail to see the plank in your own eye? You hypocrite, first take the plank out of your eye, and then you will see clearly to remove the speck from your brother’s eye. “No good tree bears bad fruit, nor does a bad tree bear good fruit. Each tree is recognized by its own fruit. People do not pick figs from thornbushes, or grapes from briers. A good man brings good things out of the good stored up in his heart, and an evil man brings evil things out of the evil stored up in his heart. For the mouth speaks what the heart is full of. “Why do you call me, ‘Lord, Lord,’ and do not do what I say? As for everyone who comes to me and hears my words and puts them into practice, I will show you what they are like. They are like a man building a house, who dug down deep and laid the foundation on rock. When a flood came, the torrent struck that house but could not shake it, because it was well built. But the one who hears my words and does not put them into practice is like a man who built a house on the ground without a foundation. The moment the torrent struck that house, it collapsed and its destruction was complete.”

And so I re-evaluated my choices, using a lens the Lord provided to me – that of a loving child to a mother lost in the chaos of Alzheimer’s disease. Each day, it steals more of her from me, from our family. Each day, she is present less and less. The world confounds her. She knows, on some level, she has no control. Today, she asked me where the man was who was just here. Both my husband and son had recently left (son to the Fire House; hubby to shooting range) and so I was not sure who she meant. Then she said, “Well, I suppose it is not time for the others to be here. People come and go all day long at this place.” And I realized she had no idea where she was, again. And then I noticed she was tying and untying, and re-tying her robe. I asked her if she needed help. She responded with, “I’m not an idiot. I have been doing this all my life. My lipstick is in my pocket. Oh, was that a knock on the door? Did you know it is almost 6 o’clock?” Wow.

And even though others may think I am making a poor decision, with my tri-focals firmly in place, and the road meandering ahead, I still choose to move mom into a Memory Care Facility. It may be 5 minutes away from our home, or it could be 45 minutes away, but when mom lives there full time, we will all be happier. She will find peace, because she is not at peace here, in my home. Once she is settled in, I can return to the visiting daughter, enjoying the snippets of our time together. And moving forward, I see clearly that this is the path we are meant to travel down. And I am using my own eyes, and not peeking over anyone’s shoulder.