Tag Archive | transitions

The Final Chapter (Part 2)

“I see my end in sight,” she said.

It was Friday morning, a little before 10:00. She had been sleeping when I arrived back at the care home an hour or so earlier, and the new hospice nurse on duty told me that Mom  had thrown up twice and so the nurse had given her something for the nausea along with Ativan to slow her respiration. Her breathing was visibly slower and easier, and she seemed to be resting comfortably. The nurse had just finished giving me her update, and I sat down and pulled out my colored pencils and the picture I was working on, when Mom woke herself up coughing and then started to mumble. I went to her side, brushed her hair from her forehead and leaned over to give her a kiss. I couldn’t understand most of what she said, but she looked right into my eyes for a moment and her voice was clear when she said “I see my end in sight.” I knew that was a moment of lucidity, and I knew the time was short.

Mom’s  sister, Alice, had wanted to call and talk to her before we left the SNF but Mom was too weak. I worried aloud that Alice wouldn’t get another chance to talk to her. The nurse, a gentle Pakistani woman with kind eyes and a lovely accent, told me that hearing is one of the last senses to go and we should keep talking to Mom even after she stops being able to respond because she WILL hear us and be comforted by our voices. I texted my aunt about this, suggesting that I could put the phone on speaker and set it on her pillow. When Alice’s familiar voice said “Hi Dot, it’s Alice,” Mom opened her eyes and looked around. I could tell she was listening to everything Alice said and when her sister said “I love you,” Mom replied just above a whisper, “I love you, too.” With her voice breaking only a little, Alice opened her Bible and began to read from Corinthians 13, the verses that end with “And the greatest of these is love.” Mom drifted back to sleep as she read. It was beautiful and heartbreaking.

The last words my dad ever said to me, in a  phone conversation two weeks before he died, were “I love you, too, sweetie.” It wasn’t something he said to me very often, and I have cherished that memory. I was  grateful that Alice got to hear those words one last time from her big sister.

A little later, when the nurse had stepped out of the room, I stood by Mom’s bed and told her that I know my dad is waiting for her in Heaven. “… and your brother Bill and your brother Tommy and your sister Shirley… and Fritz and Bob and Marilyn. They’re going to be so happy to see you again! I’ll bet they throw a big party to celebrate your arrival, with singing around the campfire.” She didn’t stir, but I trust she heard me.

I’d been feeling my dad and two of Mom’s brothers, Bill (the oldest) and Tom (the youngest), around her bed since she was at the SNF, even before we got the end stage diagnosis. Mom always said that Bill was “the best big brother in the world,” that he always looked after and protected his younger siblings, so of course he’d be looking after her now.  At random moments, while sitting beside her bed or making the arrangements for hospice, I’d see my Uncle Tom’s smiling face or just get the reassuring sense of his quiet strength. One night after I left the SNF in tears of anxiety, I got a clear mental picture of my dad dozing in a canvas camp chair beside her bed. The message was clear: Go home and get some rest. I’ll stay with her. I knew they would all stay with her through this transition and be waiting with open arms to welcome her into the next world.

That night I helped the hospice nurse give her a sponge bath and change her into a fresh diaper and a clean, soft t-shirt (cut down the back so we wouldn’t have to pull it over her head). The nurse was so careful and gentle, but Mom still kept murmuring “Ouch ouch ouch” whenever we moved her. At one point, when the nurse lifted her knees, Mom said loudly “Ouch! Stop it!” We smoothed lotion over her skin, and the nurse cleaned her mouth with a swab, and she was resting comfortably when I left to get a few hours of sleep.

(Later, I would realize that my mother’s last words were “Stop it!” and make half-hearted jokes to cover the hurt. I would remind myself that she didn’t need to tell me she loved me one last time because we had said that to each other many, many times during her last days and weeks. She knew that I knew. Later still, I would realize that she hadn’t even been aware of who was touching her when she reacted to it – she wasn’t telling ME to stop it. The last thing she said to me, to her daughter, was “You’re a good girl.” I can hold onto that.)

Saturday morning, she was visibly worse. Her breathing was once again labored, chest heaving with every breath, even though the oxygen had been turned up to 6 liters. She was non responsive, and the new nurse on duty told me that “she could go at any time now.” She asked if I wanted hospice to send a chaplain and I told her no, I’d ask for someone from her church to come. I emailed the pastor’s wife, who had come twice to visit Mom in the SNF, and she quickly responded: We’ll be there within the hour. I sat by Mom’s bed, praying that both my sister and the pastor would get here before it was too late, tears streaming silently down my cheeks.

They did arrive in time. My sister got there first, and I asked the nurse and the care home administrator (who had stopped in to check on things) to leave the room and give her some private time with Mom. Then the pastor arrived and prayed with her and read something from the Bible that talked about angels carrying us to Heaven on their wings. After the pastor and his wife left, my sister and I stayed by her bed for a long time, gently stroking her arms and talking to her about everyone who is waiting for her in Heaven.

The hospice nurse must have told the administrator that the time was close. The staff set up a bed for Mom’s roommate in the TV room, so that I could sleep on her bed and stay with my mom. My sister took a nap there, while I journaled and colored, and then we ordered some food delivered. I went home briefly to pack what I would need for overnight and feed my cats. Then I called an Uber to take my sister to her hotel, since she’d had a very long day on very little sleep.

I was sitting on the other bed, sipping some wine I’d brought in a Mason jar and contemplating whether I should try to get some sleep, when the nurse suddenly stood up and went to stand beside Mom. “It’s OK,” I  heard her say. “You can go.” I was instantly on alert, and I went to the other side of the bed and began gently stroking Mom’s arm and her forehead. “Your daughter is going to be fine,” the nurse continued. “Don’t you worry about her. There’s nothing you need to worry about now.” She nodded to me, and I started to talk.

I told her again about all the family who are waiting for her, about singing around the campfire again like they always loved to do… I reminded her what the pastor had said about angels carrying her on their wings to Heaven. “You’re not going to have to struggle or work to get there, Mom. They’re going to carry you on their wings. All you have to do is let them.” I told her that I love her so much and that I’m going to miss her, but I’m strong and I’m going to be fine — and I’m happy for her that she’ll be reunited with beloved family and won’t ever hurt again.

And while I was saying these things, she was breathing… and then, she wasn’t. It was so gentle and subtle, I might not even have noticed if the nurse hadn’t drawn my attention to it. I gave Mom one last kiss and told her to hug Dad for me when she sees him. At 11:46 p.m. on Saturday, September 22, her story came to an end.

 

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Learning to trust

All the astrologers who warned that the “eclipse season” this month was really going to shake things up were apparently not kidding around.  Just a couple days before the lunar eclipse on August 7, I learned that the position I’ve held with my company for almost 7 years is being eliminated and I’m getting laid off at the end of the month.  There’s a decent severance package, so I’m in the fortunate position of being able to take a little time to rework my resume and consider this unexpected change in career direction without needing to panic about how to pay rent… but I was still reeling a bit from the shock when…

Two days before the solar eclipse, I got a call from the owner of my mom’s care home. I was up in Portland visiting friends and we were in the car driving to meet some other friends for a fun event when my phone rang. When the owner of the board and care told me she had to call 911 for my mother, my stomach dropped to somewhere around my feet. I thought she was going to tell me my mom was dead or dying, I truly did. After learning that it wasn’t (necessarily) something immediately life threatening, I explained that I was out of town for a few days and asked her to call my niece. When my niece texted me that she was also out of town, I texted two other friends who have helped with Mom in the past. They were also out of town. As luck or fate would have it, ALL of my usual “go to” people were out of town that weekend;  even the pastor’s wife, the only  person from Mom’s church for whom I have contact info, is on sabbatical. That’s when I started melting down. Thankfully I was with two of my oldest and dearest friends, who let me have my freak-out and then calmly helped me start problem solving.

I take the responsibility I have for my mom’s care very seriously. I know she trusts me, that she now  looks to me for the kind of comfort and security she gave me when I was a child. It was absolutely unacceptable to me that she was alone in a hospital ER for hours, to say nothing of the fact that she wouldn’t be able to answer any of their questions about her medical history. But the hospital had been given my name as emergency contact and they reached out to me when they needed answers.  And at my friend’s suggestion, I reached out to the hospital chaplain, who kindly agreed to check on my mom in the ER and reported back to me that she was calm and lucid. The pastor’s wife forwarded my email to someone else from the church, who started a prayer chain and organized two volunteers to visit Mom at the hospital.  And none of it was ideal, but it was OK. Mom is OK, or she will be.

She was admitted to the hospital after nearly 7 hours in the ER, with a diagnosis of pneumonia and pulmonary edema. She had fluid in both lungs and was having difficulty breathing, but quickly started improving once they started her on oxygen and antibiotics and increased her Lasix dose. I spent a lot of my time in Oregon on the phone, managing her care as best I could long distance and keeping the family updated.

After three nights in the hospital, they were ready to discharge her to skilled nursing rehab. I was supposed to be home in time to manage that in person, to get her discharge instructions and be with her for the transition, but my flight was three hours late and the hospital had already made the transfer arrangement. I was pretty unhappy about that, and am still pretty pissed off that they let a dementia patient sign off on her discharge instructions and didn’t go over any of it with me via phone, but… again… while it wasn’t ideal, it was OK. She survived. I survived. We’re both feeling a whole lot better today.

I know that there’s a lesson in the confluence of these two events, losing my job and my mom having a medical emergency when I was out of pocket. I wish I could sum up that lesson neatly in a sentence or two, but right now all I know is that it’s about letting go of control and learning to trust.

Graduation

I was feeling selfish and a little guilty about making this trip to Colorado for my niece’s graduation without Mom. But over and over in the past three days I’ve found myself feeling so grateful that I listened to the people who told me the trip would be too much for her and didn’t try to bring her along.

First there was the flight, which was three hours late due to severe weather that forced an unscheduled landing in Colorado Springs. We didn’t land until 8:00 p.m. and didn’t get dinner until after 9:00. (To say nothing of the hassle of getting on a crowded train to the Baggage Claim building with an elderly traveler in a wheelchair.) My nephew’s flight, scheduled to arrive in Denver at 7:00 p.m., was also late. We didn’t get back to my sister’s house until 11:00 p.m. It was exhausting for me, and it would have been WAY too much for Mom.

The very next day was graduation day. The ceremony started at 7:00 pm, but we wanted to get good seats so we left at 5:30 to arrive at the auditorium at 6:15. Sarah, my niece, was the fourth or fifth person across the stage to receive her diploma – out of a graduating class of 110. The ceremony lasted two hours, then there was a reception with photo opportunities, and then we FINALLY went to dinner at 10:00 p.m. I was delighted to be there and share in my niece’s excitement on her big day. But Mom would never have made it through all of that. She has the attention span of a toddler these days and would have been restless and bored through most of the ceremony. By 9:00 she’s usually getting ready for bed, so I would have needed to take her back to the house and would have missed all the post-ceremony celebrations.

And if we’d stuck with the original plan, we would have been on a plane first thing this morning to travel to Ohio for the annual Memorial Day family picnic, which is tomorrow. I was so tired today that I slept until noon. I was deeply thankful NOT to have to get up and get to the airport. Mom would have been so exhausted from all this hectic activity, I doubt she would have had the energy to enjoy the family reunion even if we’d made it there.

No, it was definitely for the best that Mom stayed home – with her new friends at the board and care and her comfortable routine. I’m not feeling guilty anymore. And I no longer feel selfish because I’ve been able to help my sister in myriad small ways while I’ve been here, which I would not have been able to do if my focus had to be on taking care of Mom. My sister and I had a deep heart-to-heart talk today that I think did both of us a world of good. All of this made possible by me making the “selfish” choice to take this trip alone. I’m so glad I did.

Relief

Yesterday was my first day back at work after moving my mom. I called her in the afternoon to see how she was doing. I asked if she was having a good day. “Oh yes!” she replied. “I mean, we’re just sitting around watching TV, but it’s with a group of friends.”

I stopped by after dinner to visit. She was watching TV with the group and showed me that she had received a card from a friend and a letter from her cousin in Michigan. I told her that I was having her newspapers forwarded, so she should have some new papers to read soon too.

“I’m going to be here for a while, aren’t I?” she asked.

“Yes,” I said. “But you like it here, right?”

“Yes, I do.” After a thoughtful pause, she added, “It’s better than living alone, actually.”

This is exactly what I’d hoped for, that she would prefer the company of a group home to being alone in her room all day. Before I left, we talked a little more about the nice home she lives in now. “What makes this place special,” she said, “is their attitude. It’s a very caring place.” I couldn’t agree more.

I feel such a profound sense of relief, knowing that she is not only safe but also happy in her new home. The weight of worry that has been grinding me down for months has been lifted, and I feel so lighthearted I could almost fly.

Transitioning

Mom has been in her new home for five days now. She didn’t understand at first that this is where she is living now, but seemed to be under the impression that she was staying in someone’s home until her new place was ready. The first night, when Bro and I were getting ready to say goodnight, she asked “Am I sleeping here tonight?” When I said yes, she made a face at me and said “You don’t tell me these things.” I told her that we did talk about it but she probably doesn’t remember and that’s OK. For the next couple of days, whenever someone would ask how she liked her new place, she would reply with something like “I don’t know. I haven’t even seen it yet.”

On the other hand, when asked if she likes where she is staying now, she always says yes. She talks about how kind and caring the staff are, she’s getting her appetite back, and she has already made a new friend. Following the advice I received on the dementia caregivers forum, I don’t try to explain that she lives there now. I just tell her that she will be staying there “for a while” and then talk about some of the good things, like how bright and cheerful her room is or the beautiful garden just outside her window.

Her new friend is nearly 96 years old and was very active and independent until the last few months of her life. Her physical health and strength has declined rapidly but she’s still sharp as a tack. She keeps an eye on the other residents, who are all more cognitively impaired than she, and immediately adopted my mom as her new best buddy. I am thankful for this lady, who I’ll call Georgia, because she’s the only one of the residents really capable of engaging in any meaningful conversation. The caregivers tell me that Mom spends a lot of time talking with Georgia. They sit next to each other at the dinner table and in the TV room. I am also thankful that Georgia is NOT Mom’s roommate because, man, does this lady like to talk! Mom’s roommate is very quiet and seldom in the bedroom except to sleep at night, so if Mom wants peace and quiet she can retreat to her room.

The caregivers are all Filipino ladies, gentle and patient. The one in charge, Maria, is particularly good – warm and caring and on top of everything that goes on in the house. When the physical therapist came to work with Mom yesterday, she watched everything that he did and said she would start doing some of those exercises with Mom in between his visits. If something comes up that needs doing (like reminding Mom to remove her dentures and soak them overnight), Maria only needs to be told once. She also monitors Mom’s oxygen levels throughout the day, and I’m happy to say that Mom is now able to be without the oxygen machine most of the day.

I know it’s an adjustment for Mom, living in a house with five other ladies all together and sharing even her bedroom, but I am confident it will be good for her. It’s only been five days, and I’m already seeing a change for the better. Mom is spending less time in bed, more time interacting with other people. She’s got a healthy appetite again. She even joined the rest of the ladies in exercising on her first day there. As we stood outside the house on my brother’s last night in LA, Bro put his arm around my shoulders and said “Sister, you did good.”

… and here’s the catch.

So, apparently there was some miscommunication with the owner of the new board and care about the cost. The amount that I thought was the inclusive rate did not include all of the care my mom needs. We spoke today and negotiated a rate that is manageable, just barely. Every cent that she gets from social security and the VA pension each month will go to the board and care. The board and care does not pay for incontinence products, so I will have to pay for those – along with her medication costs (about $150/mo.) and her hair appointments (another $100/mo.) and any other incidentals like Ensure shakes or going out for a meal. Thank goodness cable is included and I’d already decided not to transfer her phone service (there is a “house phone” that residents can use), because we couldn’t afford it anyway.

I’m trying not to let this rattle me. I know that the much more personal, attentive care she will get there will be well worth the cost. I just hate being so close to the edge, financially. I live pretty much paycheck to paycheck myself, so it’s not like I’ve got an extra $250+ per month lying around. I’ve got enough in savings to cover her for a while, but I’ll have to dip into that for her moving costs and our family vacation in May… and I was really hoping to be able to move into a handicapped-accessible apartment building by this Fall, so that Mom can spend holidays with me instead of me having to join her at the board and care home.

Thank God I’ve still got credit.

Thirty Days

Yesterday I gave our 30-day notice at Mom’s retirement community. I’m relieved to have found a much better place for her – a small board and care home with only six residents, where she will get the kind of attentive care she needs and deserves. She will have to share a room, but it’s the largest and best situated room in the house, with a private bath and a sliding glass door opening onto the beautiful fenced backyard. The owner of the home has been in this business for twenty years and she impressed me with her compassion and commitment to this work.

When I took Mom to see it, she said the home was beautiful and absolutely loved the yard and garden – but she said she didn’t want to move again. Understandable, since she’s already moved twice in the past 15 months. I gave her a few days, then broached the subject again, and I didn’t even get through half of my carefully prepared arguments before she agreed that the care home sounds like a good move. “This place is nice,” she said, “but it doesn’t feel like home.” I asked her if she wanted to take some time to think and pray about the decision before I gave her notice, but she said no – “this feels right.”

I’m so happy she’s on board, though I was prepared to take the decision out of her hands if I had to. The woefully inadequate care at her current facility was underscored by what happened Thursday night and Friday of this week. I called her on Thursday night around 9:00 p.m. She was really out of it when she answered the phone, not making a lot of sense. She told me that “they” (staff) had taken her someplace and just brought her back and got her ready for bed. When we hung up, I called the front desk and was told that staff had found her sleeping on one of the couches in the public areas and brought her back to her room. Considering that she almost never leaves her room after dinner, I can only assume that she stopped to rest on her way back from dinner (around 6:00 p.m.), fell asleep and was still there nearly three hours later. It is inexcusable to me that they could just leave her lying there all evening. There are cameras throughout the facility, so someone must have seen her. Concerned, I stopped by on Friday morning before work. I found her bedroom window wide open, the room very cold, and Mom huddled under every blanket she has, phone still in her hand from our call the night before. She was drenched in sweat and had soiled herself. Her medical alert call button was lying on the dresser, the button part having come loose from the necklace.

Let me count the ways this was unacceptable. All of them will make it into the complaint I file with the state licensing board the day after she moves out. I wish we didn’t have to wait 30 days. I wish I could move her tomorrow. But we can’t afford to pay for two rooms at once. So I’m just going to check on her daily, if possible, and be a thorn in everyone’s side to get her the care she needs. It will be an enormous relief to move her into a home where someone will actually CARE.