Is It Grief or Guilt or Both?

The Beginning of the End

2020 was one Hell of a year. It began with raging fires in Australia. By summer the world was on fire as the COVID-19 virus ravaged countries around the world. This disease and the sickness it caused along with hundreds of thousands who lost their lives seemed so far away from the insulated world where I lived. I was busy taking care of household responsibilities and caring for my Mom.

The majority of my time and energy was focused on my mother. Determined to stay COVID free, my family quarantined as did so many others. We did not need the complications and health concerns caused by COVID to come into our home. We had, in my mind, more devastating health issues with which to confront.

Delirium Makes an Apperance

Mom was hospitalized 3 times during 2020. Luckily, none of these visits were COVID related. However, COVID made these trips stressful for Mom as I was limited to the time that I could be with her. Each visit began with a UTI that she could not fight with a normal regimen of antibiotics.

For some elderly patients, a UTI is suspected due to the change it can cause in the persons mental status. Confusion and combativeness are typically the symptoms seen in these patients.

Mom’s UTI’s were often accompanied by dehydration which would in turn effect her potassium levels. Each diagnosis required hospitalization to combat the UTI and the related health issues. It was during Mom’s first week long hospital visit that I learned that some elderly patients experience delirium while hospitalized. The confusion she was experiencing with the UTI would wane through treatment but the delirium due to being hospitalized would take its place. There was a bit of relief in having an explanation for Mom’s erratic and confusing behavior but it was not enough to ease the anxiety and stress that we both experienced.

With each trip, the doctors were able to treat Mom’s UTI and to get her potassium levels back to their proper levels. But with each trip, I lost a little more of the Mom that I knew.

Mom had been showing little signs of dementia beginning late in 2019. She also suffered from double vision, positional vertigo, scoliosis, high blood pressure, stage 3 kidney disease, osteoarthritis, and a tumor on her pancreas. Managing her many medicines became an arduous task. As her mental decline worsened, caring for Mom became more and more difficult and required me to remain vigilant and on guard 24 hours a day.

My Mother’s Keeper

Becoming the caregiver for an aging parent is heartbreaking, confusing, scary, aggravating, emotional, stressful, exhausting and yet the most fulfilling (outside of motherhood) job ever. But it is a struggle as both the adult child and aging parent come to terms with the changes in their relationship.

As summer approached, Mom was spending the majority of time in bed, but she could still take care of her most basic needs. I was there mainly to make sure she ate, took her medicine and shuttled her to her many doctor appointments. I had already taken over paying her bills, buying her groceries and scheduling her appointments. She had lost the mental acuity to properly pay her bills….payments would be sent without checks, checks would not be recorded, double payments would be made, etc.

From time to time I would notice very odd behaviors from Mom. While asleep I would watch as she acted out her dreams. One night in particular, I could tell from Mom’s movements that she was dreaming about taking a shower. It was surreal. Other times, Mom would mention that she and her father were going to lunch on a particular day. Mom’s Dad passed away in 1974. She often times thought that we had guests in our house. She would be concerned as to whether or not I had fed them breakfast. In her mind, someone was always in her room visiting with her.

I installed a security camera in Mom’s room so that I could monitor her from anywhere in the house. I would watch in bewilderment as she would have a conversation with a friend who she believed was there with her. She became confused as to where we were living. She no longer recognized her own bedroom. From time to time, I would take her around the house in hopes of jogging her memory that this was the same house we had lived in for the past 13 years. After time, I realized that I would be unable to convince her of this.

Change is inevitable and sometimes scary

Looking back, I realized that a simple decision that Mom made in April of 2020 would bring about later that year so much confusion for her. In April, we hired a contractor to repaint her room. Mom decided that she wanted the room painted the same color. At that same time, I convinced Mom to let me order her new bedroom furniture. The majority of the furniture in her room was close to 40 years old. Although her bed was fairly new, I knew she needed a different bed. Mom needed a bed that she could more easily get in and out of and one that I could install rails to keep her from falling out of bed as this was becoming a common occurrence. Once the walls were freshly painted and the new furniture was arranged, her room looked brighter and more up to date. The new furniture was placed in the same places as her old so the feel of the room was still the same. I did add a recliner in her room so she had a choice to watch TV either from her bed or the comfort of her chair. I now wish that I had not ordered the new furniture. I am certain that this minor change compounded Mom’s confusion. Change is not always good.

Just as suddenly the confusion and hallucinations surfaced, I would notice that on other days Mom seemed to be better. It was as if her dementia would come and go.

I addressed these concerns with her doctor. He gave her a “dementia” test. It consisted of a series of questions such as “who is the president, what is today’s date, draw a clock and show the time of 2:30”, etc. There were a total of 25 questions. Mom did quite well on the test. The doctor was not convinced that Mom had dementia. I was convinced that the doctor was wrong. I explained to him that Mom was intelligent and these questions were not a good assessment for her mental decline. I asked the doctor to look at Mom’s eyelashes and tell me what he noticed about them. He was a bit perplexed. I told him that Mom had put lipstick on her eyelashes instead of mascara. That, I told the doctor, is a red flag that she was suffering some level of dementia. That was a test she clearly failed.

I was with Mom everyday, and without a doubt she was suffering from dementia. In fact, she demonstrated many of the symptoms of Lewy Body Dementia.

Some of the signs of Lewy Body include:

1) visual hallucinations

2) Movement disorders (slowed movement, rigid muscles, tremors or a shuffling walk)

3) Poor regulation of body functions which can result in dizziness and falls

4) Cognitive Problems such as confusion, poor attention and memory loss

5) Sleep difficulties which results in REM sleep behavior disorder that can cause dreams to acted out physically

6) Fluctuating attention which includes episodes of drowsiness and long naps

7) Depression

8) Apathy

Source: mayoclinic.org

Not the Mom that I Remember

I scheduled an appointment with a neurologist in hopes of getting a confirmed diagnosis and more importantly some help or relief for Mom. Unfortunately, the earliest appointment I could get was 3 months away.

Until then I could only watch as the Mom that I had known for 57 years slowly slip away as her confusion and memory issues worsened. Google, WebMD, Alz.org, ClevelandClinic.org and other websites and forums came to be my only source for information. Thankfully, my wife, Aubrey, and my daughter, Lucy, provided the emotional support I needed and both assisted with caring for Mom where and when they could. Still, I was overwhelmed, scared, exhausted and teetering on becoming an emotional wreck.

I witnessed as Mom struggled to use her TV remote and her Iphone. She could no longer make a phone call without assistance. I would show her daily how to locate her contacts in her phone and how to ring them, and every day Mom would ask me to phone someone for her. I don’t think it was that Mom could not remember how to make a call as much as it was her brain slowly losing the ability to function properly. She could still send text messages, but those messages became more and more the muddled ramblings of someone who was clearly suffering from dementia.

“In Lewy Body Dementia abnormal deposits of a protein called alpha-synuclein form in the brain. These deposits, called Lewy bodies, affect chemicals in the brain whose changes, in turn, can lead to problems with thinking, movement, behavior, and mood.”

Source: nia.nih.gov

I Need Help

I wasn’t sure if I was doing enough. I was uncertain if I was providing adequate care for Mom. I didn’t feel that anybody outside of our home truly realized Mom’s condition. Was I crazy? Was Mom not as bad off as I thought?

I turned to family members who I knew had experienced similar situations with an immediate family member. I received loving support from some while others simply told me to search Google. I was not so much looking for scholarly or medical information from them. I was aching to know how they handled caring for their loved ones coupled with the physical and emotional exhaustion that accompanies caring for a dementia patient. I did not need Google. What I was asking for was sympathy and compassion. To that one family member, Google could not and did not help. Thanks.

I didn’t realize it at the time, but with all the emotions and responsibilities I had taking care of Mom, I was also grieving the loss of my Mom. She was still here with me, but the Mom I had known all my life was gone. Every once in a while Mom would have moments of lucidity. She would be back almost to her old self and then just as quickly would be gone again. It gave me hope and also the opportunity to make sure that I told Mom how much I loved her knowing she would understand me. She too could express her feelings and emotions. Those moments became fewer and fewer and while I am thankful for them, the yo-yo effect they had was devastating. It was a painful reminder of just how much of Mom had and continued to suffer.

As Thanksgiving approached, I was determined to make this holiday as pleasant as possible. It would be a challenge since we were still quarantined so no friends or family would be joining us. Also, I had no way of predicting Mom’s behavior during the holidays. I hoped for the best.

I hate to cook. In fact, I really would not miss it if I woke up one morning and noticed that our stove and oven had been taken. Cooking is overrated. Cooking creates a huge mess. I hate messes. Cooking takes up a lot of time…deciding on what to cook, going to the grocery store and buying the food, bringing the food back, preparing the food, cooking the food and cleaning up afterwards all for a meal that lasts no more than 30 minutes tops! It just seems like a waste of very valuable time, time that could be spent doing more important things. But Mom wanted a homemade Thanksgiving dinner. Throughout my adult life, I have never cooked a Thanksgiving dinner. I have either enjoyed my grandmother’s dinners, my Mom’s cooking or my bonus Mom’s meals. But, here we are in the middle of a pandemic and the responsibility of cooking this Thanksgiving meal that Mom has requested falls on me. Ugh! My “things to do list” was full. My OCD keeps me very busy, Mom keeps me very busy. Yet, I begin planning the meal. Acquiescing to Mom’s request for this special meal turned out to be a true blessing for me. Mom was in rare form for Thanksgiving. She was out of bed more than usual. She insisted on helping me to cook. I gave her easy tasks that she could complete while sitting at our kitchen bar. Mom was engaged, talking, laughing and enjoying being with us. Typically, Mom stayed in her room no matter how much we would ask and plead with her to join us. This was a habit she had formed many years ago. She seemed to enjoy the solitude of her room. Aubrey, Lucy, Mom and I all sat together and ate our Thanksgiving feast. It was the first meal we had eaten together in quite while. Not to brag, but it was mediocre.

Thanksgiving seemed to be a huge success! I was elated. The meal I had prepared was not half bad. I was able to keep the mess from cooking to a minimal, my family said that they enjoyed the meal (I think they were being kind in saying that), but most importantly, it felt as though Mom was back with us. I still had to assist her with getting dressed and taking her medicine and would not let her walk without being within easy reach of me as she was so easy to fall, but mentally, she seemed to be in good shape. She was talking and it was clear that she was in our world and not one of the makings of her hallucinations. I knew that this sudden improvement would be short lived, but I was determined to enjoy as much of it as possible.

I Want to go Home

We had been discussing for the past month of selling our house and downsizing. Mom was very much on board with this idea. I had discussed it with Mom each day that her mental awareness was back to a mostly normal state. We discussed the finances of buying a new house. We discussed what we would price we would list our current house, and we began searching on line for a house that would meet our needs. With Mom being in such good sprits and demonstrating a heightened since of mental acuity we spent the latter part of Thanksgiving Day searching Zillow.com for a house. Mom found one on that she really liked. We called our real estate agent to schedule an appointment for us to look at it. On Friday, our agent called back to inform us that the house already had a contract on it. The real estate market was just entering the crazy phase brought on by the pandemic. We realized that if we found another house we liked that we would have to move fast. Mom actually joined Aubrey and I as we went to look at three houses. Mom was leaving the decision to us as to which house we chose, but she still added her input. We found our dream home and with Mom’s blessing we put a contract on it. We accepted an offer on our current home 2 days after listing it for sale. My cousin, who is Mom’s personal attorney, came over to review and approve of the two contracts. Everything seemed to be moving forward and within 6 weeks we would be moving into our new home.

As the Christmas holiday approached, I was stretched beyond my limits. Not only did I have my day to day responsibilities to keep me busy, I had to focus on packing and organizing for our move. I checked on Mom constantly. She was falling much more frequently as she would forget to use her walker anytime she got up to walk. From time to time, I would hear Mom on her phone at night telling her friends about the house. She seemed as excited as we were.

The bedrooms in the new house are all upstairs so I called about having a stair lift installed for Mom. I made an appointment for the day of closing for the company to come over to approve the estimate and to begin installation. Everything was falling into place. My schedule was very hectic and my anxiety was through the roof, but I was excited for this next chapter in our lives.

Two days before the closing on the sale of our existing home and the purchase of our new home Mom’s condition took a drastic and frightening turn for the worse. Her hallucinations were happening very frequently and were very frightening. Mom would see birds flying throughout the house. At times she would see bugs crawling on the walls. She was adamant about seeing a man walking around in our backyard. I was absolutely terrified. I was uncertain as to what I should do. I would calmly talk to Mom about her hallucinations but my efforts in calming her were futile. Mom kept telling me that she wanted to go home. I tried convincing her that she was at home, but she refused to believe me. I wheeled her around the house hoping that the familiarity that she should have after living in the house for 13+ years would bring her back enough to recognize that she was at home. Sadly, it did not. The only sense of peace that she got that night was falling asleep from sheer exhaustion. I stayed with Mom that night and again witnessed her acting out her dreams. She was playing bridge (one of her favorite past times). I got little to no sleep and worried terribly as to what the coming days would bring. I also worried about how we would be able to physically moved with Mom being in the condition that she was in. I just prayed that when the day came, I would figure out something. As for now, the move, which was still 4 days away, was the least of my problems. And those problems would only worsen by the following day.

The next day Mom’s hallucinations were the worst She had ever experienced. She continued seeing birds flying throughout the house and bugs crawling on the walls. I would continue to try to reassure her that neither birds nor bugs were in our house. I told her that I believed that she saw everything that she was describing. I validated what she saw as being real to her, but I tried explaining that it was something in her brain that was making her see these things. Early in the evening she received a phone call from a friend. At first, the conversation started out fairly innocuously. Within moments, I heard her telling her friend that I had tried tying her up and that I wanted to kill her. I remember feeling incredibly sick to my stomach upon hearing her say that. I knew that Mom was hallucinating but for Mom it was real. I could only imagine how scared she must have felt. She was crying and begging her friend to drive down to be with her. I had spent well over a year caring for Mom and now she felt physically threatened by me. I called my Dad and my brother. I was terrified. Mom was terrified. I wanted Mom to be reassured by someone she felt she could trust that I would do nothing to hurt her. Both my Dad and brother managed to calm her. She was able to tell me later that evening that she knew I would never hurt her, but that when she was thinking that I would, she felt it to be true. I told Mom that I understood, but it still hurt. Within minutes, she was wanting to call the police as she believed, once again, that I was going to tie her up and kill her. Again after receiving assurances from her friend, my Dad and my brother, Mom drifted off to a restless sleep.

Time to seek Professional Help

That evening I realized that I needed help. I had always vowed that I would take care of Mom for as long as needed. I felt as though I had failed her. After talking again with my Dad and brother, we all agreed that Mom needed to be in assisted living. She needed to be in a facility where trained professionals could help her. Google could no longer help me help Mom. I had reached the end of my being Mom’s primary caregiver.

I continued to struggle throughout the evening of the thought of placing Mom in assisted living. I knew it was the right decision but that did nothing to relieve the guilt I was feeling. When Mom woke up the next morning and asked what I had told the police the night before, I knew the time had come.

I was very fortunate that I knew where to place Mom as we had to move my bonus Dad into assisted living just 4 years earlier. However, with the pandemic still raging, moving her in was a very different experience than we had before. Mom had to have a COVID test. I knew that there was no way she had contracted COVID. The test only served to meet the requirements of the assisted living facility. My mind was racing, my heart was breaking and I was faced with volumes of paperwork to complete. All of this coincided with the closings for the sell and purchase of our houses. I was teetering on the edge of sanity. The moving company would be at our house in 2 days. There was still so much to do in preparation of our move. I had to rethink how to pack Mom’s belongings. And then I had to figure out what to tell Mom. I contemplated telling her that she would be staying at the facility until we could get things settled into our new home. It made sense to me, and I thought it would to Mom as well. I chickened out on logic and decided to tell Mom that I was taking her somewhere to play cards for the day. We drove up to the building. I was nervous as to how Mom would react. I was certain she would recognize the place since we visited there multiple times a week for the 9 months my bonus Dad was there. I was happy and also saddened when I realized she had no idea where she was. I held my composure and told her goodbye and that I would see her soon. I was not allowed to go into the building because of their COVID restrictions. I left and cried all the way home. I tried to convince myself that I was doing what was in Mom’s best interest, but I could not shed the thought that I had just abandoned my mother.

The next day was moving day. I called to check on Mom several times that day. I did not talk with Mom as it was recommended that it would be better for Mom and help her adjust. With each phone call, I was assured that Mom was fine.

We were finally in our new home. I was elated to have the move behind us despite the enormous task of unpacking that still faced us. I loved our new house. I loved the location. I hated the path taken to get here. I truly felt as though I had sacrificed Mom to reach this goal.

Was it Abandonment?

Two days after our move and not having spoken to Mom since placing her in assisted living, I nervously went to visit. I rang the bell at the front. The Community Relations Director came to the door and asked if I could wait a full week before visiting Mom. She assured me that Mom was doing quite well and was even participating in group activities. She felt that by waiting, Mom’s adjustment would be complete. I left upset that I had not been able to see Mom. I was upset for several reasons. Firstly, I had steeled myself to face Mom not knowing what to expect. Secondly, I was not accustomed to being told when I could or could not see Mom. She had been dependent on me. I was one who had, for over a year, determined what was in Mom’s best interest. Thirdly, being told she is doing fine is very different from seeing it for myself. I left and cried all the way home.

Once home and after regaining my composure I called the facility to find out when would be the first time I could schedule a visit. I wanted to be put on the calendar as soon as possible. A week after Mom was admitted I drove over for our scheduled meeting. I was excited, nervous and scared but wanted desperately to see Mom. It had been years since I had gone this long without even talking to her. I arrived a few minutes before my appointment. I rang the bell and was met by the head of maintenance. He told me that all visits had been suspended and that they were on lock down because several of the employees had tested positive for COVID. Lockdown meant no visitors but more concerning was that lockdown meant that the residence had to remain in their rooms. Mom was all alone. She had what I am certain she thought was a stranger checking on her from time to time. I was consumed with such horrible thoughts as to how this was effecting Mom. I left and cried all the way home.

I tried calling Mom knowing that a phone call was the only way I could visit with her. There was no answer. I imagined she was out with the other residents enjoying an activity. I called several times throughout the day. None of my calls were answered. I was convinced that Mom was furious at me and ignoring my calls. The following day, I tried calling again. This time my calls went straight to voicemail. Mom’s phone was dead. I knew that she would not know this was an issue and would not attempt to charge her phone. I drove back to the facility bringing a charger in the event Mom’s had been misplaced and asked if they would please help her get her phone charged. Still my calls went unanswered.

I called again the following day and explained how I was unable to reach Mom on her cell phone. I was told that I could call the facility after 6pm and that a staff member could get Mom to the phone. I called that night. The employee asked if I could call back later as there was no one at the moment that could facilitate our phone call. I was beginning to panic. I was being told that Mom was doing well yet over a week had passed, and I had not spoken to Mom. I felt certain that Mom was convinced that I had discarded her.

By now, my emotions were completely raw. I felt so defeated. Friends and family were calling asking about Mom. I could only tell them what I was being told. Was it true? I had no way of knowing. After all that Mom had done for me during my life, I had forsaken Mom. I was consumed with guilt, and I was angry…very angry.

Late that afternoon, I called and talked to the Community Relations Director. I relayed how more than two weeks had passed since I had seen or spoken to my Mom. She said that the lockdown would continue for at least another week, but that they could set up a FaceTime call with Mom. They would send someone to Mom’s room to help her with the call.

The evening of the call arrived. I was excited to talk to Mom but probably more scared than I had ever been in my life. Did Mom know where she was? Did she know why she was there? Was she angry with me for putting her there? I found out the answer to those questions within the first minute of the conversation. For a few moments I was reliving my childhood as Mom admonished me for moving her to this facility without discussing it with her first. I felt chided and momentarily lost my strength and will to try to explain things to Mom. Mom was angry. She insisted that I come to pick her up immediately. She told me that they were only allowed water once a day. She said that one of the employees had to go out and extract the water from a well. She said that someone at the facility was mistreating the puppies and leaving them out in the cold. Mom was terrified that they would die. She said that she was going to disown me but for me to please bring her home. At the end of the conversation I told Mom, “I love you.” She in turn told me that same. Was it just an automatic response? Did she still mean it? Had she already forgotten about how angry she was with me? Not having day to day contact with Mom, I had no way of knowing her true mental state. The phone call left me bewildered. I only knew that Mom was alive.

I called Mom again a few days later. I could hear a lot of commotion coming from her room. She told me that she was fine but that she had fallen. The paramedics had just arrived in her room. I talked briefly with the paramedics, and it was determined that Mom did not need to be taken to the hospital. Again, another call that left me with more questions than answers.

The lockdown was lifted! I was able to schedule an actual visit with Mom. Unfortunately it was a window visit which meant I would sit outside and Mom would be brought to a raised window where we could talk. It was a chilly 45 degrees that day. Mom was seated at the window when I arrived wrapped in a multitude of blankets. I could just barely see her head and nothing else. She looked so small, frail and weak. I started talking to her but got little response. I asked Mom if she knew who I was. Her answer was, “they didn’t tell me.” I was devastated. My own Mother had no idea who I was. I tried telling her over and over again that it was me, Paula. She finally responded, “I’m cold.” The visit was brief as I realized that Mom was very uncomfortable due to the cool weather. I left and cried all the way home.

I had lost Mom yet again.

Two days later, I brought my daughter, Lucy, with me to visit Mom. I was certain that Mom would recognize her favorite (and only) granddaughter. She had been with Lucy since the day she was born. There was not even a glimmer of recognition. We left, and I cried all the way home.

Hospice Care

I called the Community Relations Director and told her that I thought it was time for Mom to be placed on hospice. Having hospice would provide another set of eyes and ears on how Mom was doing. The hospice nurses could actually visit with Mom where I could not. I was given the name of a couple of different hospice facilities, decided on one and made the call. That very afternoon a representative came to our house to complete the paperwork. Once again, it seemed as though volumes of paperwork had to be completed. I also needed to call Mom’s doctor as he too would have paperwork to complete on Mom’s behalf. I had to make arrangements for the change in the filling of her prescriptions. I had to relay all of Mom’s medical history to this stranger who sat across from me at my kitchen table. I was having to make end of life decisions for my Mother. I did have Mom’s medical directive, and Power of Attorney over all her affairs, but I never imagined being in a position where I would be using this responsibility for such decisions. It all seemed so clinical and at the same time so final,but again I knew it was what was best for Mom.

Later that same afternoon I received a phone call from the hospice nurse. She was in Mom’s room checking her vitals and talking with her. The nurse told me that her blood pressure, oxygen levels and breathing all were good. She said that they were having a nice conversation. The nurse relayed to Mom that she was talking to me. With guidance from the nurse, I could hear Mom in the background saying, “hey Paula.” We talked for a few more minutes. I told Mom that I loved her. She said, “I love you too.” That would be the last time Mom would ever speak to me again.

The following afternoon I received a call from one of the hospice nurses. She was concerned about Mom but held off on giving any grim news until she could talk to the director for the facility. As this was her fist time seeing Mom she was not certain if what she was assessing was a new state for Mom or if this was Mom’s “normal.” Within a few minutes, the nurse called back and broke the news that Mom was “transitioning.” According to the director, Mom was markedly different than she had been the previous day.

Transitioning is a term used to indicate that a patient is approaching death within a few days. Typically a patient will exhibit signs that death is nearing. These signs are listed below.

1) As a person approaches death, they become less active. This means their body needs less energy than it did. They stop eating or drinking as much, as their appetite gradually reduces.

2) The patient spends more time sleeping. This lack of wakefulness is because their body’s metabolism is becoming weaker. Without metabolic energy, a person will sleep a lot more.

3) As a dying person’s energy levels are reduced, they may not want to spend as much time with other people as they once did. If a dying person is becoming less social, their loved ones should try not to be offended. It is not unusual for a person to feel uncomfortable letting others see them losing their strength. If this is the case, it is advisable to arrange visits when the person dying is up to seeing someone.

4) Changing vital signs..As a person approaches death, their vital signs may change in the following ways:

blood pressure drops

breathing changes

heartbeat becomes irregular

heartbeat may be hard to detect

urine may be brown, tan, or rust-colored

A person’s urine color changes because their kidneys are shutting down. Seeing this and the other changes in a loved one may be distressing. But these changes are not painful, so it may help to try not to focus overly on them.

5) In the days before a person dies, their circulation reduces so that blood is focused on their internal organs. This means very little blood is still flowing to their hands, feet, or legs. Reduced circulation means a dying person’s skin will be cold to the touch. Their skin may also look pale or mottled with blue and purple patches.

Source: What are the signs that someone is close to death? MedicalNewsToday.com

Death and Dying

Mom was exhibiting signs described in stage 5 of the dying process. The tips of her fingers had turned a light purplish color due to the slowing down of her circulation system.

I called my brother and my Dad immediately to share the news with them. My brother lives in SW Florida, and I suggested that he plan to come back to Georgia ASAP. My brother contacted his son and both made arrangements to fly in the next day.

Due to Mom’s condition, I was allowed to be with her in her room. I stayed with Mom most of that evening. She was incoherent but mumbled from time to time. I was not certain what she was saying. I’ve always heard that a person’s sense of hearing is the last to go. So, I made sure to tell Mom how much I loved her. I thanked her for my wonderful childhood and for being such a magnificent mother, grandmother, wife, daughter, sister, aunt, cousin and friend. I made certain to tell Mom that Andy, my brother, and I would be ok. I wanted Mom to know that loosing her will hurt but that if she was ready to let go to do so. I talked of memories from years gone by. I talked about my other brother, Tommy, who had passed away in 1995. I assured Mom that she would have so many people who loved her waiting for her on the other side. I told her to let go of her pain and be free.

My brother, nephew and Dad met at my house Saturday morning, February 7th. Along with my daughter, Lucy, and I, we left for our visit with Mom. We were given the instructions for our visitation. We could go in 2 at a time. We could stay as long as we wanted. We had to wear surgical gowns, gloves, masks and a head covering. Andy and his son, Michael, went in first. Andy said that Mom moved her eyes when he was in her room. He felt certain that she knew he was there. My Dad sat and held my Mom’s hand and talked to her. They have been divorced for 30 years but still loved one another. Both had remarried and blessed our family with the best bonus Mom and Dad. Seeing my Mom and Dad together during this intimate moment was a testament that true love never dies it simply goes through a transition.

After being there for several hours, we decided to let Mom rest. We drove away with heavy hearts and tears in our eyes. The next morning my brother, nephew, daughter and I went back to visit Mom. Although we knew that Mom was dying, there was no way of knowing how long the process would take. Our only concern was for it to be painless and peaceful. Late that afternoon, my brother and nephew had to return home. Even in death, life goes on.

Early in the evening my phone rang. I was not expecting good news. It was the hospice nurse. She advised that if I wanted to see Mom again that I should plan on visiting very early in the morning. She did not think that Mom would live much longer. I left immediately to be by Mom’s side. I talked to her throughout the night. I was growing very sleepy and climbed into bed with Mom. I dozed off for no more than 5 minutes. I awoke suddenly and turned to see if I could hear Mom’s shallow, slow breathing. I could not. When I drifted off to sleep so did Mom for the last time.

I peeked out of Mom’s room to inform the staff that Mom had passed away. They called hospice as their nurse would have to be the one to officially declare Mom dead. I sat with Mom for 30 minutes waiting on the nurse. After she left, I waited another 45 minutes for the attendant from the funeral home to arrive to pick up Mom’s body. I sat there crying, bawling, wailing and gently talking to Mom. I stayed with Mom until her body was loaded into the hearse. I left the assisted living facility for the final time, and cried all the way home.

The Business End of Death

Mom did not want a funeral service. She simply wanted to be cremated. I opted not to even run an obituary in the local papers. My brother, Andy, and I would tell those we felt closest to as well as Mom’s friends about her passing. That was it. Mom was gone.

It has been hard obtaining closure on Mom’s death. No family gathered, only a couple of friends stopped by to pay their respects. Someone sent flowers. In normal times, it would have seemed strange not having a service, but with the pandemic still ruling our lives it had become the norm.

I quickly discovered that I would have to put my grief on hold as I attended to the many tasks that have to be completed upon a person’s death.

I met with the funeral home director less than 24 hours after Mom had drawn her last breath. Again, forms had to be completed and urns had to be selected.

I had to settle matters with the assisted living facility and pick up Mom’s belongings. I donated everything with the exception of just a few items that very same day.

Then it was a matter of meeting with the attorney to settle Mom’s estate. Again, more paperwork. This process took over a month. While waiting for the will to be probated I had to pay the last of any of Mom’s remaining bills that I could pay, I had to contact the bank and credit card companies to advise them of Mom’s death. I had to cancel any pending doctor’s appointments. Grief was given a back seat while these matters were settled.

It took approximately 3 months to get Mom’s estate settled. Her estate was not even complicated. In fact, it had been laid out in a very orderly fashion. It just took time to run the prescribed course.

I know keep Mom’s ashes in an urn in our den situated on a shelf very close to my claimed section of the sofa.

Life without Mom

I think of Mom every single day. I still grieve. I still have overwhelming feelings of guilt. It is difficult going on not knowing and never knowing if Mom was satisfied with the care I provided and the decisions I had to make on her behalf. That I will live with for the rest of my life.

I am still trying to find joy in our “dream” home. I am still trying to convince myself that I did not take a dark road to get here. Hopefully one day, I will feel that this is my forever home and one that I truly deserve as new memories are made by me, Lucy and Aubrey.

As for the grief that I had to shutter while taking care of the business end of Mom’s death, it still comes and goes. On Twitter @LaurenHerschel gave a perfect analogy of grief. She said that grief is like a big ball in a box with a pain button inside the box. At the beginning the ball bounces within the box and frequently strikes the pain button. As time passes, the ball becomes smaller yet the pain button still remains the same size. The ball continues bouncing but due to its smaller size hits that pain button less and less frequently. Using this analogy it is easy to understand how perhaps years after someone has died you see something that reminds you of them and your grief surfaces to the top. It is at this moment, that the smaller ball within the box has pushed the pain button.

The ball inside of my box of grief has gotten a bit smaller and in time will continue to shrink. I know that there is always the possibility of the ball hitting the pain button. When that does happen, I will embrace my grief and think of the many happy memories I have spent with my Mom.