Early on in Mom’s Alzheimers disease, she hated when I would leave. It caused her to be confused when a “piece” of the puzzle was removed. She would drill me with questions like Why? Where? How long? Can I come? Did I do something wrong? and so many more. It broke my heart to see her upset, mad, depressed and an array of other emotions.
Even though I was her primary caregiver, I still had my hands full with young children at home and I was a wife and mother to four. Just as I did with other learning curves Alzheimer’s threw in my path, such as how does one answer the same question over and over and OVER again, without going crazy. I found a solution that worked for me. I made a game out of it. I didn’t allow myself to respond to her with the same answer even though her question or comment was the same every time. I think that kept my sanity. Just as I came up with a coping skill for that situation, I came up with a plan for my exit strategy. I decided to begin to not tell her what I was really doing (picking up my kids at school, working, going on a trip, church work, etc.) because no matter what I would say, it evoked confusion and negative emotions. She wanted me with her 24/7.
If you find yourself in this situation, perhaps you could try a few of my routine answers. They seemed to satisfy Mom’s curiosity and she didn’t appear to become as emotional as she had previously.
I thought of things to say that I thought Mom would approve of, things that sounded like I was taking care of matters. Mom was a very disciplined, orderly person so I was trying to connect with that part of her and it seemed to work well. Some of my frequently used responses as to why I was leaving are below:
I’m going to get us some water.
I’m going to put the kids to bed.
I’m running to the car.
I’m going to run to the store and get you some snacks.
Would you like me to get you a cup of coffee?
I’ve got a doctor’s appointment and well, you see where I am going with this.
I know I shouldn’t lie, especially to my mother, but don’t judge until you’ve walked in my shoes or any caregivers shoes for that matter, and seen sadness and confusion overcome your loved one day in and day out. I would do anything to ease her burden and I did.
On New Year’s Eve, 2018, at 12:30 a.m., my daughter-in-law texted me letting me know my 34-year-old son had been admitted to the hospital due to shortness of breath and fever. He had been on medicine for almost four days but things had gone south.
She asked if I could come and help out and, of course, I said yes. After making sure I had sitters lined up for my Mom and my business was squared away, I went by the assisted living facility to tell my Mom goodbye before I headed West. I had spent Saturday and Sunday sitting with Mom, who has end-stage Alzheimers and I decided it was time to begin using oxygen to help with the wheezing. I stopped by Monday morning and did my usual morning routine with Mama.
Mom on oxygen.
I got very close to her, put the back of my hand on her cheek and said, “Good morning sweet Mama.” She typically would then lean into that hand and put her head on her shoulder embracing my tender, warm touch. That particular morning it took a few times to get her to respond, but I kept trying. I moved to her left side doing the same motion I do every morning and added, “I love you, sweet Mama.” She quietly responded, “Thank you. I love you too.” Those turned out to be her last words I’ll ever hear her speak. I stayed for thirty minutes, and after being reassured multiple times by the sitter that she would be okay, I gave Mama another kiss and suddenly burst into tears. Something in my spirit was just different than previous times when I had left her. My friend again reassured me and reminded me my son needed me.
I began my journey west to see about my son. He is young and very healthy. He exercises often and is active. He had been sick for six days at this point and this ole girl was very concerned. As I was driving the next five hours, I would call the sitter and check on Mom. It seems that 30-35 minutes after I kissed her goodbye, she started with the infamous “death rattle.” I called my sister in Alabama and told her I needed her to come home, NOW! I couldn’t bear the thought of Mama being without one of her six children. How could I possibly be two places at one time? In all the moments I had imagined Mom dying, this was not going as I had dreamed. I felt strongly one of us should be with her. She had been our only living parent for the past 40 years.
When I arrived at the hospital in Texas and entered my son’s room, I was horrified at what I saw. The man who I had seen only seven days before for an early Christmas gathering was now lying in a hospital bed with no color, droopy eyes, and not even able to put two words together and honestly, it was devastating. Oh God, please heal him! I am a crier but held it together for him, barely. I asked him if the pneumonia they had previously diagnosed him with was bacterial pneumonia, and he said, “yes,” and then he added, “and spesis and pleurisy!” My knees buckled and I felt like I was going to faint. Sepsis!!!! How in the world did this happen?
The next twenty-four hours were the absolute most gut-wrenching experience I have ever had. As I grew with concern over my son’s bizarre condition, I was getting word that my Mother was declining rapidly. How can I be two places at once? My precious child and my sweet Mama. I couldn’t choose. I love them both dearly and yet they were both fighting for their lives.
As soon as I saw my son and realized the seriousness of this situation, I called my husband and my younger son and told them to get here as soon as possible. My son, my firstborn, was in the fight of his life. The doctors were shocked and unable to understand how a patient so young and physically fit could be in such a horrific and unexplainable predicament. Before I left for his house that evening, he had begun to start feeling somewhat better due to antibiotics, etc, etc. The doctors had made a decision to try and remove some of the 1500cc’s of excess fluid in his lung the next day. I stayed the night with my two grandchildren at their home while my husband and son stayed at the hospital. My daughter-in-law was a trooper and had stayed by her husband’s side the six days prior to his hospitalization and needless to say, was exhausted.
All throughout that day, I kept my racing mind on two things: my mother and my son. The latest update on my mother was that she was refusing to drink anything, piercing her lips closed. My sister had not yet arrived but would be there in the morning. We discussed whether to start morphine with Mom but chose not to at that time.
On January 1, I spoke with my Mom’s sitter and she mentioned how bad Mom sounded, the rattle worsening overnight. I was told it sounded like she was drowning. She even recorded it for me so I could hear the “death rattle.” I wanted to clearly understand what was transpiring in the death process. I wanted to be there and couldn’t but that did not and would not keep me from staying in touch. Around lunch, it was determined we needed to begin morphine to keep Mom comfortable. Two of my sisters arrived shortly after from Alabama. The youngest sister confirmed how quickly Mom was progressing. I was informed my only living aunt and uncle went to see Mom to say their sweet, emotional goodbyes to their big sister.
Back at the hospital, they were not successful with draining the fluid from my son’s lung, and they did inform us that it was the consistency of slush. My concern grew. My son’s medical team was contemplating putting some drain tubes in to help him with his severe back pain and difficulty breathing and to have a better chance of getting that fluid off of his lung.
I do believe with the emotional see-saw I found myself on for well over 24 hours, I was a verifiable “basket case.” I couldn’t turn off the tears. I was drowning in uncontrollable waves. My heart was ripped in two. My husband and my sons saw my tormented state and were drawn into my downward spiral of anxiety and grief. It was a horrific, explosive combination. We all sat in the hospital room, my husband knew I needed to get back home and walk out the journey I had begun ten years ago. My sweet son, who could barely talk, looked at me with all sincerity and compassion and told me I needed to finish this chapter with Mom to have closure. This was the final chapter. Oh my gosh, how could I leave? How could I turn my back on my son?
I was incapable of making a decision of any kind with my state of mind, so my husband did. He called in work and told them he was taking a vacation, and my youngest son was going to drive five hours to get me home to walk out Mom’s final hours. As we began our journey home about 5:30 that afternoon, I gave my son a very emotional farewell, somewhat encouraged by his progress, but still extremely concerned about him, and all we could do at this point was rest in HIS arms while two people I love more than life itself were fighting, and fighting hard. God has carried me, healed me, protected me, and blessed me all throughout my life. I trust Him. Until that moment, I don’t think I fully knew what 100% trust looked like.
I called while we were driving to get an update and was told my Mom’s breathing was much worse and they were going to increase the morphine to make her as comfortable as possible. I arrived shortly after 10 p.m. and raced in to find Mama lying in her bed. I did what I had done thousands of times before, I got on my knees by her bed to get close to her and whisper to her and the floodgates opened. My sisters came to my side to comfort me. I took in every sound, every breath, and every little movement. The end was indeed near and I was so relieved my husband willingly took my place so I could finish my journey with Mom. I stayed up all night with Mom and my sisters took turns watching with me. At one point, things started changing with Mom. Dying is a process and just like no birth is identical to another one, the same is true for death. Mom was going to to leave this world and enter into the next in her own unique way. I’ve said this countless times, but it merits saying it again, Mom taught me SO much about so many facets of life and now she was doing it again, except this time it was lessons in death.
January 2 rolled around and the sun peeked out behind the clouds. Our beloved sitter came in about 6:30 that morning and as she always did, began her meticulous care of Mom. That day was filled with workers, sitters, friends and family stopping by to pay their respects. Oh, the lives that mother of mine had touched. We had several people who wanted to pray for Mom, so each time we stood around her bed, held hands and prayed. It was a beautiful day filled with love, hugs, and wonderful memories shared. In the midst of that day, I had also gotten word that my son had gone into surgery to have drains placed in his left lung. Every single person who asked how about Mom immediately followed it by “I’m praying for your son.” So many prayers were being said.
That afternoon, Mom gave us quite a scare and we (my sisters and I) gathered around her bed and started singing songs. We sang for over an hour and she completely calmed down and was resting. It was an anointed time. It was calming for all of us. I could feel the angels hovering above us. I knew the time was drawing near. About 9 p.m. I could no longer function having been up for almost three days, and I decided to drive 10 minutes to my house to rest. My sister called shortly after 10 and woke me from a deep sleep and told me “it” was happening. I quickly ran through the house, woke my girls up and we headed back to Mom’s.
We arrived to people standing in the hall, and once inside her room, I saw Mom was lying in her bed, at peace. I no longer heard the “rattle.” My weeping sisters rushed to my side. Please don’t think what I’m fixing to say is mean, I say it because I had played out this scenario in my mind thousands of times the past 10 years when Mom’s situation was grave and every single time, Mom would rebound. I just simply looked at Mom and asked, “Is she REALLY dead?” Then the reality hit me. It hit me HARD. I remembering weeping and saying, “My life just changed dramatically!” The reality that God heard my prayers. The reality that she didn’t suffer long. The reality that her battle with Alzheimer’s was finally over. The reality that she was not even there but already in heaven, healed and whole. The reality my sweet Mama was gone.
At that moment, I knew coming back was the right thing to do. It was the absolute HARDEST thing to do, but it was right. I am so thankful for my husband who stood in the gap for me and for my son understanding and encouraging me to come back.
The next morning my son had begun to make progress and had one chest tube taken out. Everyone was happy with how things were heading in the right direction. He remained in the hospital for another week with his Dad by his side and unfortunately, but understandably, had to miss his Mamaw’s funeral.
One scenario that had never entered my mind in all these years, was the one where my husband, my best friend, my strongman, would not be there with me when Mom passed. I depend on him so much. He had stepped in so many times and cared for Mom. He was amazing with her. He was a son to her. She absolutely lit up around him and would do anything he asked her to do. The workers were always so happy when my husband would sit with Mom. It made their day easier. I found myself going one, two, three, four, then five days without him while the family gathered and we prepared for the funeral. I was so relieved when he arrived for the visitation the night before Mom’s funeral. Again, in his absence, God was holding me up, literally.
Me and my five siblings at Mom’s funeral.
I am happy to report my son has made a 75%-80% recovery and we are so thankful for all the prayers. I am convinced on January 2, God could have taken either one of my loves or both for that matter, but I am eternally grateful He chose Mom. She lived a beautiful, fulfilled ninety-one years. I know her first order of business when she reached those pearly gates was to tell God to heal her grandson. And HE did.
My son leaving with a new lease on life.
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https://www.thewritersporch.com/wp-content/uploads/2022/07/cropped-WritersPorchLogo.png00Ellen Stephenshttps://www.thewritersporch.com/wp-content/uploads/2022/07/cropped-WritersPorchLogo.pngEllen Stephens2019-02-09 20:41:202022-07-02 00:01:41MY HEART RIPPED IN TWO
Today marks the one-month anniversary of my Mother’s home going. This month has been incredible. I have been loved on, cradled, hugged, prayed for and encouraged, even by people I didn’t know. God sends people into your life when you need it most. When the nights are darkest and the sunrise will not come soon enough, God sends angels to minister to us. I feel as though I’ve had an extra dose of “angelosity” this month and I am ever so grateful for it.
Immediately after Mama passed away, I was very emotional and that was to be expected. But 24 hours later, I was in my bedroom and had a sinking feeling in my chest come over me. I just had to flee. I needed to get to her assisted living home as soon as I could. I was literally running out of the door, bawling, when my sisters asked what was wrong and where was I going. I told them where and my answer as to why was I returning to Stonebridge because for over a year I had been there every day to check on Mama, every morning between 6:45 and 7:00 I would arrive and every evening between 6:45 and 7:00 I would return. As I got in the car, I looked at the digital clock on the dashboard and it was 7:00 p.m. My chest was hurting and I could hardly breathe. I could not get there quickly enough. It was where I was supposed to be.
Countless walks down the halls, hand in hand.
We arrived and three of my favorite people who work there were at the nurse’s station. We hugged and cried and as we began sharing stories of Mama, the tears turned into laughter and that continued for over an hour. It was just what I needed. My sisters and I walked down the hall to her room and as we strolled quietly, I glanced to and fro and recalled with precision, every single place, every chair, every hallway, everywhere that I had been with Mama. We came to her room and it was completely void of furniture except for the lift chair. My sisters commented “She’s not here anymore,” to which I replied, “Oh but she is! Her presence is everywhere I look in the room.” The place where her couch was and we would sit and call my siblings on their birthdays so they could hear Mama once again belt out “Happy Birthday” to them. We would sing, and sing, and sing some more. It was the impromptu student’s desk for Mama where I continually tested her memory unbeknownst to her.
Mom’s beloved couch where so many special memories were made.
I hope that I will always see a part of you inside of me.
My eyes caught the dim light coming from the bathroom. The bathroom is where we spent countless hours and honestly, I learned more lessons in that tiny square footage than anywhere else. Hard lessons, practical lessons, lessons in grace, sweet lessons in forgiveness and gratitude. I know it sounds odd, but anyone who had been in that room with my mother, knows what I am speaking of. That bathroom was literally my classroom.
I next turned to look at the place where her beautiful off-white bed was and remembered how she fought us so hard to lie down in her bed. She was much more content just sleeping on the couch. It was a reminder to me how content she was with a simple life. If I did get her to sleep in her bed, she wanted me to lie down next to her and we would engage in sweet, memorable pillow talk all the while teaching me, encouraging me, stretching me.
I looked tothe space where her hospice bed had been placed. Oh my goodness. The pain I felt as I looked at the piece of equipment was immense. I think one of the longest struggles in Mama’s life was in or near that bed. She passed away in that bed. But over the past six or seven months prior to her death, as she slept she had multiple encounters, we believe, with family members who had already passed or perhaps with angels. During the night shift, she would often raise her hands in a slow, graceful movement to the ceiling as if reaching for a hand or praising the Lord. Other times, she would just clap softly. What a sight to behold. Every time this occurred, a hush would come over the room to see if Mama would utter anything that might give us a clue as to who she was interacting with. To our delight, the person she spoke of the most was her Mama. Oh, those were special moments.
Mornings with Mama
The last item I recalled as a fixture in her room that she inhabited was the wheelchair. Up until February of 2017, Mom, who was 90 years old at the time, required no assistance with walking. However, she had a series of falls and the worst one required us to put her in a wheelchair. My legs were the storytellers regarding my constant battle with that wheelchair as I transferred Mama from the recliner to the wheelchair multiple times a day with a helper. My claim to fame will never be a graceful caregiver. Bruises, all colors, shapes, and sizes, were a constant sight on my lower extremities. There are good memories, as good as some can be, of that wheelchair, too. One of Mom’s favorites pastimes in the wheelchair was to pedal her feet as quickly as she could as we pushed her down the hallways. Sometimes she was on auto-pilot and she was thrilled with her adventure. Other times while she was in her room, we turned the music up a little louder and she maneuvered that chair all over that room, all the while getting in some great rhythmic shoulder action to the beat of the music.
As we left Mama’s room that night, her presence was so strong to me. As I walked down the hallways, looked into the dimly lit dining hall to the table and chair she sat at every meal, I touched the couches and chairs she had sat in outside the dining hall, and peering into the TV room…she was there. I felt her presence around every corner and practically every chair in that TV room. I had spent hours there, days even.
I am quite shocked yet delighted to share with you how well I find myself adjusting to such a drastic change in my life not only losing my sweet Mama, but having so much free time every single day, particularly during important family times such as breakfast or early morning before my girls leave for school and in the evening in the middle of supper. My family is really enjoying me being home again. I remember seconds after Mama took her last breathe, I said outloud, “My life just changed dramatically!” My sister later told my two daughters in the hallway that they had just gotten their Mama back. Truer words have never been spoken.
I’ve had a few really hard cries, the ugly cries, especially the second night she was gone and much to my surprise, it was at 7 p.m. yet again. What occurred that night is another story unto itself.
I attribute my peaceful transition to God’s strong arms carrying me and the people, so many people, who had loved on me and encouraged me. That is living water to my soul. It is also because Mom lived a beautiful, very fulfilling life for 91 years. She told me 20 years ago she was ready to go so I have an unspeakable peace where that is concerned.
Lastly, I believe one of the reasons I am not an emotional wreck, which would be my usual M.O., is because during the past decade, I gave Mom my time and attention and tried to the best of my ability to meet her ever-changing needs. I prayed God would never make me put her in a nursing home. He didn’t. I prayed He would not let her suffer, and He didn’t. I prayed most of the children and grandchildren would be able to come and all but one came and he was in the hospital himself. He literally had a doctor’s excuse.
At the end of my first month without my sweet Mama, I head to bed content and peaceful and knowing with full resolute that what I did for Mama, be it right, wrong, or indifferent, well, it was enough. It was enough. I have zero regrets. I attempted to do everything to the best of my ability, although the learning curve was extremely high, and love Mama unconditionally and treat her the way I would want to be treated. That was my daily goal. Was it easy? Oh my goodness, no, not at all. Would I do it again? I received so many countless blessings and memories and lessons and was able to live out what God’s Word tells us to do in front of my children and grandchildren, I would have to say a resounding, “YES.”
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Talk about a cliffhanger!!!! Since Mom is turning 91 in a couple of weeks, I asked her if she was getting ready to go to heaven. Her response….wait for it….. it’s a cliffhanger friend…..
She responds with, “No,” to which I retorted, “Why?” She said she was and I quote, “Waiting…..” My mouth flew open, and I scooted to the edge of my seat, and I asked her for what or who? Nothing, nothing at all. She was finished talking. It was climatic and a cliffhanger all in one fell swoop. I may never know.
Don’t worry. I’m trusting in God’s perfect timing, but I do get rather curious now and then. Today was just one of those days. I just had to ask. I think her answer can be comprehended as “No, not today.” I do know when God calls her home she is ready. She has been more than ready for 20 years. I look back over the past twenty years though and look at the lives she has touched. It never stops. People have written and called me all through the years, in fact, just yesterday and today about how a story or a photo touched them. Mom loves people, and she is so loved by so many, even strangers.
Every time I see her say or do just the perfect thing at the perfect time and I see how it affects a person (myself included) its a reminder to me that God’s not finished with her here on this earth yet.
