“It all makes sense, now.”

Me and Mom
2017 – Me and Mom

My mom passed away yesterday. She was 91 years old. She died peacefully in her sleep, which is what we all prayed for. Mom suffered for over 13 years with Alzheimer’s. It truly is the most horrible disease – “The Long Goodbye,” as it is known.. Not only do you lose your connection to those around you, but you lose little bits of yourself along the way. Mom had no memory of me, of being married, of having children. During our last visit, she told me she may be gone for awhile because she had made arrangements to go see her parents in New Zealand. And I think they are once again, all together as a family, with God singing Hallelujah! And that brings a smile to my face and forces some joy into my tears.

Mom and I in 2019

Mom and I were blessed to have spent some pretty wonderful moments together. I am not going to sugar-coat anything, because Alzheimer’s totally sucks and it makes life for everyone affected particularly difficult. But you know what? I’d rather remember the laughs and the giggles. The times where she was just so funny and light-hearted. Because mom could be that way. Once we got her off all her medications, this wonderful, kind, and fun old lady emerged and I enjoyed her immensly. During the last few months of her life, she was a happy woman. She loved where she lived, and everyone loved her. I know she could be a stubborn woman and refuse to say, use her walker (which is why she suffered with a broken nose and two broken hips within a year) nor would she stay in her wheelchair when she was asked to. But she could light up a room and make everyone in it glad she was there. Sometimes the comments she would make would cause us all to shake our heads in wonder and think, “Where the heck did that come from?” Near the end, when Alzheimer’s had pretty much won, conversation was virtually impossible. “Isn’t it a lovely day today, Mom? The sun is shining so brightly!” And her response? “You know, you have to weigh wether you want some thing in your life or not. So I put things up and stare at them, and then I decide.” Okie dokie! LOL!

Our face masks together!

One day we decided to have spa day. I did our faces with masks; we soaked our nails and did manicures; I did mom’s hair and my hair. We laughed at how we looked, but it was fun. And I am so glad I did that with her. It is one of my fondest memories of when she lived with us. And as I sat and went through the box of her things, I realized how weird it was that 91 years of life was in a box at my feet. Oh, I have other mementoes and photos, but these things were the things mom had around her these past few months. It was quite the collection: random envelopes with her name on them, but nothing inside. A Carhart clothing tag (Mom owns nothing Carhart). One of those plastic hook things that holds a sales tag onto clothing. 1 glove with no matching one. A broken watch. Some cards from friends. One of the most poignant for me was that she had two photos of my oldest son out from when he was a baby. One next to her bed and the other in the bathroom. He was there and I know it touched him deeply. An Alzheimer’s mind is so interesting!

Mom had an amazing life. Growing up in New Zealand and then coming to America by steamship in the 1950s with my dad and making a life here, away from all that was familiar. She and my dad are both only children, so there are no siblings, no extended family. Mom remained a New Zealand citizen her entire life (we used to call her our “resident alien”) and always felt close to her parents. She thought she would travel back “home” to see them again, and I never once reminded her they had been dead for decades. She never felt called to become an American, and it was one of the quirks I loved about her. That and her New Zealand accent that was coming back as she aged. She had it when I was a kid and I loved it. I’m glad it came back.

I was so blessed to have been introduced to Alzheimer’s Resource Alaska. I took every course they offered. I immersed myself in all things Alzheimer’s. With the consultation of two amazing Care Coordinators, I was advised to get all my mom’s affairs in order, while she was still her, still coherent, and could meaningfully engage in decision making. It was the best advice I could have gotten. Truly. Having that hard conversation about her end-of-life wishes was just that, hard. Asking someone how they want to die, and trying to get care details out of them is rough. But mom and I discussed as many scenarios as we could and each time it was, “I don’t want machines. I don’t want intervention. If it is my time to go, let me go.” The past six months, mom was on hospice care, and we had all the paperwork in place to just allow her body to stop living. At 5:30am yesterday morning, it peacefully did that. Mom chose her end and it happened just the way she wanted it. And we also made all the arrangements for her aftercare. Mom chose to be cremated and so we met with the Cremation Society of Alaska and they came to my home and we had another one of those hard conversations about what mom wanted. They are the kindest people. And it was such a blessing for right now, for today. Why? Because I literally have nothing to do. It is all done. Oh, there are little details, but nothing major, because we planned it all ahead.

People have been texting and calling. Some stupid calls from agencies already wanting to collect the bed she used or the nightstand next to the bed. She’s only been gone 1 day! Ugh. One of my closest friends called and she was being all sweet and kind and I told her to stop being so nice, or I would start bawling all over again. So she says, “Your hair looks bad today.” I love that woman so much! It was exactly what I needed. LOL. A good laugh. And quite honestly I am doing okay, until something stupid happens and I just start crying. Like the cremation man (not sure how else to put that!) called and mentioned mom’s cremains would be ready by Wednesday and I just lost it. Poor guy. He was so kind and I am sure he deals with grief every day. You just don’t know what will trigger it.

Woodland Fern

I was given mom’s wedding ring as they were preparing to take her away. I placed it on my right hand and it fit just perfectly. I thought I would just continue to wear it. As the day progressed it got a little loose but no big deal. My husband and I did some retail therapy after leaving mom yesterday. I’ve been looking for ferns to grow in a shade garden we have and I wanted to stop by this nursery I really like. We stopped and walked around. It was good for me to be outside. We found several varieties of ferns. So today, feeling all mopey and by myself, I decided to plant my ferns. It was good for me. My dog sat next to me while I dug in the dirt. I had bought 6 ferns so I was digging 6 holes. I was down to two more when I realized mom’s ring was not on my finger. I feverishly dug through those newly planted ferns until I found it. I put it back on and just sat there and cried my eyes out. I hope my neighbors don’t think I lost my marbles!!

But one of the things that has stuck with me the most was one of the comments my son made to me, while we were sitting there waiting for them to come and get mom. I was gently stroking her hair (she had the most amazing, soft hair) and he said to me, “I’m feeling kind of happy for Grandma because it all makes sense now, for her. She’s not confused anymore.” And he is right. All this time, with all the things we were doing to help her and she bristled at it, well, now she knows we were helping her. When we visited and told her how much we loved her and we hugged hard (even going against regulations and actually touching her) she now knows why we clung to her so hard. We truly were loving her, but it didn’t make sense to her why these strangers were there, and why they were hugging her. I’d like to think on some level it made sense and she knew, instinctively, that we were family, but I know with certainty, it is all clear, now. She stands at the timeline with God and He is explaining it all to her. She is surrounded by the angels and the saints, and her parents, and she is glowing and happy and joyously worshipping God – for eternity. The Holy Spirit has completely filled her so she is perfect once again, and in no pain, and with clarity of thought denied to her all these years.

Not gonna lie, even though I knew this day was coming on swift wings, and I was prepared for it with all the details taken care of, it hurts. It really does. I am a strong person and although I have been known to weep at TV commercials, I am usually the one helping everyone else grieve. I am allowing myself some time to fall apart. I am allowing myself to grieve, whenever and however it comes at me. It will lessen in time, I know. But right now, it is sharp and my heart aches. And I miss my mom already, even though we’ve been practicing this goodbye for so many long years. The pain of loss is still real. The other part of the equation is I am also relieved. And please don’t take that wrong. Mom is clear now. She can walk and not need her walker or wheelchair. She isn’t lost anymore. She is finally with her parents in a heavenly version of New Zealand. She is making her way to eternal glory through the mercy of God and His omnipotent forgiveness. God is good, and He has mom, now. I can rest in that.

Mom – I love you

And here we are…

Me and Mom
Me and Mom 2016

That photo above was taken the day my mom moved in with us, moving her from California and a senior center, into our home in Alaska. It was momentous, to say the least. Her Alzheimer’s had progressed so much so, that she could not care for herself, nor live alone. And because the situation was what it was, she was brought to live with me. It was the first time we had been under the same roof in more than 40 years. It was a rough adjustment, to be sure. Mom was so confused that she was living in my home, and not that I was living with her, in her home. That I was the homemaker and not her. That the kitchen was my domain, not hers. That I cooked the meals and cleaned the house, and did the laundry. She declined fairly rapidly and now that I look back on it, I think it was because she was so confused. So out of her element. And the arrangement grated on her. So she sunk inside herself. We had days where I could not get her into clothes. Days when she would sleep almost the entire day, and then was able to sleep the entire night. I was getting concerned. She was very angry and the situation was becoming untenable.

One of the smartest things I did, at that time, was I admitted I needed help. I could not continue to have her live with me and someone needed to step in. Someone needed to give her the care she would not allow me to give to her. I needed a strong intermediary. And there are absolutely some amazing people out there who know exactly how to do what I needed. Through the Alzheimer’s Resource Center here in Alaska, I was able to get the education I needed to know how to deal with my mom, some wonderful resources to get mom into the community, and also a place where she could live. And so, with a heavy heart, we moved mom into an Assisted Living Home. I know, deep in my bones, that God guided me to where He wanted mom to be. She is happy, she is well cared-for, and I don’t worry about her. Not one sleepless night. The staff is kind, the home is clean and so very sunny, and the owner deeply cares about all her clients. It was truly a blessing.

Mom is all smiles…

Mom found joy in being with people her own age. She attended the senior center programs. She painted. She laughed so much. And she made friends. It was so cute to see the two of these ladies above hold hands across their recliners as they watched TV together. It warmed my heart. And my mom is happy. I have only seen her frustrated and unhappy a couple of times these past few years. Overall, she is a happy person there. We visit every other week or so. At first, as she was declining more, it would make her sad to have us leave. The staff said she would talk about us, but when we visited, she sought a connection and did not seem to find it. She slowly wasn’t upset when we told her we had to leave. She was ready to get back to her day.

Mom has since fallen twice. Breaking a different hip each time. The first time, she came back and was so happy and easy to help recover. The second time, after the surgery, she languished for a couple of weeks in the hospital. She has never come back quite the same since. She has lost so much of herself. In her mind, she is not 91. Nowhere near. She told me the other day she has plans in place to re-visit her parents in New Zealand. She has no memory of ever being married, nor of having children. This last visit was hard for me. She used pronouns for me: she, her, that lady…not her daughter. She hasn’t known my name for awhile, although she would sometimes say it in passing, but not as it belonged to me. My visit this past week sort of undid me. And I chastised myself for my behavior. I kept talking about my dad, or her 2nd husband, Frank, or my brother. My children, my grandchildren. My home and my dog, who she just loves. None of it resonated with her. I showed her photos and she did not recognize herself in them. And I realized as I was driving down the highway, that it was a waste of time. She has lost those memories and I think I did it so she could feel a connection to me. Because even though I am almost 65, I still need my mom. In my head, sometimes I am still her little girl. Only now I can never be that for her. All I can be is a friendly stranger who comes by now and then. We can chat, but it has to be superficial. I cannot expect more out of her – it is not fair to her. Because when you try to make them remember, it only frustrates them, because their brain just isn’t connecting to memories. She forgot I had brought her some clothes and shoes, and that had only been minutes.

One of the best definitions I have seen that is perfect for Alzheimer’s

For my mom, this word describes her longing for New Zealand. She has lived in America far longer than she lived there, but the heart of her youth was spent among the green of New Zealand. It’s the place she felt the safest and most loved, and it was years before she was married to my dad; she was living at home, and living a pretty carefree, and very simple, life. She can no longer relate to her life now. She has no concept that she is 91 years old. Time holds nothing for her. I see it when she searches my face, and I know she is looking for something that will connect the two of us. She feels a kindred spirit with me, but has no idea why. And she just cannot make that connection. I saw it particularly this time, when her eyes changed and she stopped trying to figure me out. And I cried inside. Because I realized I would never have my mom back. Not ever.

1974

I shared this photo with mom. I had just graduated high school. Her comment was, “That’s a nice photo. Who are they?” And it made me sad because it was a pivotal moment in my life. I remember the day so clearly. And how we laughed and cried because I was growing up. LOL. I had plans to move out to attend college, and little did I know that I would never live under a united roof with my parents, again. I stayed with them when I was between roommates. I visited. But it was no longer my home.

New Year’s Day 2021

I have been blessed with the marriage of my dreams. Are we perfect? Heck no. Who is? But we are in love, even after 36 years together. My home is with my husband and wherever it is we live. And we have lived quite a few places! As I was growing into being a wife and mother, my mom and dad had divorced and both had remarried. Mom and Frank moved quite a lot and we did not see one another very often. Birthdays, holidays, events, and the occasional weekend together. We did not even talk that much. I would chat every few days with my stepdad and my mom would just yell “hi” in the background and tell him to keep talking to me. Ha-Ha. So not seeing my mom daily is not a new thing for me. I was busy raising and homeschooling our kids. We lived on farms and that was not exactly what my mom was used to, nor did she prefer it. They lived in senior, master-planned communities with golf courses. We lived in a lot of dirt. Ha-Ha. At first, I felt guilty when we moved her to the ALH because it’s about a half hour drive away. And in the beginning, every Sunday we saw her. But then “it” happened and the world shut down. Churches closed so we stopped driving into town to attend with our kids and grandkids. We live-streamed God. Whoever would have thought it???!!!

Junior Iditarod 2021

We got busy. And so the time in-between visits lengthened. And computers and media, FaceTime, all that just passed mom by. It confuses her to see you on a phone. Once or twice we tried with one of the worker’s iPads. She just did not connect. Because of restrictions inhumanely placed on senior centers, I can not enter the facility. I can stand, fully masked, in the storm door entry, with mom in a wheelchair, in the house. And that is how we communicate. She does not understand the face diaper thing, nor why we cannot enter and have a “proper conversation.” This last visit, she grew uncomfortable at the cold coming in (I totally agreed! It was all of 14 degrees outside, even if the sun was blazing away. I was cold, too) and so she did not want to talk long. I realized that my visits don’t affect her too much. I explained to the owner of the home that mom and I have not been particularly close and we did not see one another a lot prior to her Alzheimer’s, so not seeing her often probably works for us both.

When all is said and done, I miss my mom. I ache and there is not a thing anyone can do about it. But I cannot allow it to cloud either of our lives. She is happy. Her attitude is good. She is not in pain. And she enjoys her days. I cannot ask for more for my mom. I can’t take this disease away. There is no cure. And I have chosen to not think about it. Perhaps tomorrow I may delve into all of this miasma that is Alzheimer’s disease and how devastating the affect is on everyone around the person who has it. Today? Well, today I am trying a new barley beef soup recipe, and I have some garlic bread to have with it, because my husband has been gone for a week and it’s cold and I wanted to warm him up a little bit, and to welcome him home. Mom? I’ll check on her and perhaps visit her weekly, but I am not going to worry. It adds nothing to my day and it does not change a thing. I love the woman who was my mom and I miss her. That is never changing.

April 7, 2021

I love you, mom. I am sad. I am mad. But I am always your loving daughter. Always.

Hospice. Stunned. Expected.

This is my mom as a little girl in New Zealand. Next month, she will be 91 years old. I am praying she makes it to her birthday. I have shared with you all about our journey with mom and her Alzheimer’s disease. It really is the long goodbye, and there are some awful moments. But there is joy along the way as well. We have spent some horribly tearful moments with mom, but we have also had ooodles of laughter. She is beloved by all that come in contact with her. Below is mom with my younger brother. They laughed and laughed.

Mom loves her kids and grandkids, and the great-grandkids. She had a way of making you feel like the most important person in the room. And to her, at that moment, you were. When she visited for the first time in Alaska, our oldest son’s children were little. Like 3 and 1, I think. She would get down on the floor and play cars or whatever it was they were doing. I loved watching her do that. And the kids were loving it, too. She always is smiling and never wants to be a bother to anyone. And since I am her only daughter, she loved to help me in the kitchen. (Which I found funny, because I was not allowed in hers!) We spent many happy hours washing dishes and gabbing. It took me back to when I was a child and we would clean up after family meals at my grandma’s house, and all the female family members pitched in and washed and dried all the dishes – those were the days before dishwashers – and I loved seeing all the towels hanging around the kitchen, draped over the oven, counters, sink. It warms my heart. And mom and I re-created some of that with just the two of us. I smile when I think of it.

Mom’s friend, Jeannie, sent me this photo above and I just love it. It is of mom and her husband, Frank. It is the last time the four of them were together. And they look so good. I miss Frank a lot. He was such a joy in our lives, and mom misses him every day. In the hospital, she kept thinking the people walking into her room were Frank and she would say, “Frank, darling, is that you?” Breaks my heart!!

Back in June, mom fell and broke her hip. She had surgery and recovered so fast, we hardly knew it had even happened (we know she did not know it happened!! ). She had been doing so well, we had to place alarms by her bed and chair. She refused to stay down for more than 15 minutes day and night. It was disconcerting. She thought she was about 40, in her mind, and 40-year-old’s do not use walkers! And so, like we were afraid of, mom fell again and this time broke her opposite hip. She underwent surgery for the second time in 4 months. She now has, what the doctors called, “a matched set.” She has no idea she broke anything, just like the last time. Only this time, she is not progressing. And so today, we moved her back to her assisted living home, under the care of a hospice team. It is devastating, but I expected it long before this. Please keep her in your thoughts and prayers.

Hospice in the age of Covid and governmental oversight is a new and tricky endeavor. Each state, each city, has precepts in place, as well as CDC guidelines. (To be clear – there are no LAWS. Just governances and statutes, precepts and guidelines. But no LAWS). To say it nicely, the elderly under hospice often die alone, with no one from their family allowed to be present. Some states are allowing, under a case-by-case basis, family members to come in. It is usually only 1 person, and it is the same person each time. It is cruel. And I officially hate this entire journey with this ugly virus around. Alzheimer’s is bad enough, let alone adding Covid to the mix. To my way of thinking, I can’t make mom any worse than she already is, considering she is on hospice care. And no one can be in an assisted living home unless they test negative for Covid, or are screened. (Perhaps NY is an exception??). For me, I believe I am healthy enough to be with my mom, and she is certainly no danger to me. So I am very frustrated. To say the least.

One of the best things I did for myself and my mom, to prepare for her living with us, was to take advantage of the resources I had. And one of the best, hands down, is Alzheimer’s Resource of Alaska. Honestly, they are the nicest group of people who go out of their way to assist you in any way they can. You are able to walk into their offices, plop down into a chair, and bawl your eyes out if you need to. They even provide tissues and a hot cup of coffee, along with an experienced shoulder to cry on. (I also did that when I was tackling Medicare “everything” for my mom – only this time I went to Links of Alaska. I also got coffee and tissue! They helped me get through stupid amounts of paperwork, and they also made sure mom got all the assistance she was entitled to. They are amazing, and coordinating benefits is what they do best!!) At ARA, I took their in-person courses as well as their online offerings. And truly, I would not be able to handle everything I have in front of me, nor the journey thus far, without their input and instructions. I read what they suggested I read. I devoured everything I could about Alzheimer’s because I was about to become my mom’s caregiver, her voice, her protection, and her resource for everything. And trust me, it is nothing like becoming a foster parent or adopting a baby, because I have done both of those things, too. The staff gives you their personal cell numbers. They expect and encourage you to call anytime with questions or problems you need help getting through. They also provide a Care Coordinator, who works with the state and the federal governments, assisting families to ensure their loved one receives all the benefits and care they are entitled to. A wonderful, comforting group of people.

When you take on someone who has lived on their own for decades, and you try and assist them, it can be rough. In addition, when it is caught early, they understand their diagnosis. Mom knew what she had and told me she hated it. She has no clue now, but that has taken 10 years. It has been the past three years that she has been my sole concern. It is not easy. Not everyone can do it. I lasted almost two years before we placed her in an assisted living home. I tried but we did not work well as mother-daughter when it was all turned around. I think deep down she expected that she would care for me, and in her home, not the complete opposite. But now I am at arms-length because of Covid. And that hurts, it really does. The one thing I can be, and enjoy fully, is her daughter. Thankfully, through everything I learned through ARA, I was ready for today. I understood what mom wanted and how she wanted her last days to go. And I am keeping that promise to her. We had a day of lucidity several years ago and I am so grateful I had the courage to ask the tough questions. Because I was encouraged by ARA to ask the hard questions and to delineate all my mom’s wants, desires, and needs. We processed all the needed paperwork early and every “i” is dotted and every “t” is crossed and it’s notarized to boot!

I hate that this is the most recent photo of me and mom – masks! Ugh! Anyway, she fell just two days later. So you never know when you will need all the things that you need, until you need them. I made copies upon copies of every piece of paper we signed. I have file folders and clipped ID cards. I have files for Power of Attorney, and for medical information, for her burial/cremation, for her DNR/Comfort Care. There are copies for every bill we paid and every doctor we visited. I have copies of her information on file with all the EMTs and ER Hospitals in the area. It makes handling an emergency with a loved one so simple. All the local hospitals have all her records. They share back and forth and so it makes medical history so easy. All her medications are listed in one place (well, she only takes one medication and vitamins, so it is pretty easy!) for easy reference. You especially want that in case giving your loved one medication in the ambulance or ER may interact unfavorably with a prescription. And I have all the local pharmacies we can use, familiar with her information, as well. And I learned all this preparedness through studying and taking courses with Alzheimer’s Resource Alaska. I am sure there are agencies like it where you live. I also used LINKS Resource Center here in AK, as well. They both excel at what they do!!

My advice? Be prepared. Be over-prepared. Because when an emergency strikes, it conjures up all these emotions and we often do not think clearly. I was so grateful I just had to reach for a piece of paper in a familiar file folder – neatly labeled where I could easily see it. And with all mom’s information already on file, treating her in a timely matter was easy. And the hospital staff appreciated having her medical history at their fingertips. In addition I was sure all the agencies had my information readily available with current phone numbers, email address, and my POA paperwork on hand.

Mom is entering something new. She will be cared for, I am certain of that. She will be pain-free, I am also certain of that. And she will be lovingly walked through this next phase of life. And I am free to be her daughter, just the way it is supposed be. Please keep us in prayer!

Prayer for the Terminally Ill

Lord, Jesus Christ, Who suffered and died for our sins that we may live, if during our time we have sinned in word, deed, or thought, forgive us in Your goodness and love. All our hope we put in You: protect your servant, Maureen, from all evil. We submit to Your will and into Your hands we commend our souls and bodies. For a Christian end to our lives, peaceful, without shame and suffering, and for a good account before the awesome judgement seat of Christ, we pray to You, O Lord. Bless us, be merciful to us and grant us life eternal. Amen.