“…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…

 

 

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“…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.

“..home is a reflecting surface…”

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

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

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

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

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

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

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

I think I can sleep now. Blessings.

 

Narrow the mission field….

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

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

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

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

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

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

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

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

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

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