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.

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