thoughts—Thursday
April 2, 2020 through
Tuesday – May 26, 2020,
August 11, 2020
Jeanne Hicks-Barnett

The last two afternoons I have gone out to mom’s house and done some cleaning to get it ready for Marcus and I to move in—we want to try to move in July 1, but, with the amount to be done, I am trying to deal with it in stages.

There is still so much to be done out there . . . still so many of mom’s things, personal items which is what everything out there is . . . memory triggers. I keep expecting to see her walk in from her bedroom when I am cleaning in the kitchen . . . heartbreaking, precious memories of when I went out to help clean after she had gotten unable to do it but was not in the nursing home yet. October 2017 was when mom started having multiple TIAs and spent several times in Rehab and then the Rehab doctor said he would not release her to go to her house, but would only release her to a skilled care facility, so October 26, 2017, we checked into Oakdale Nursing home in Judsonia.

Grief threatens to overwhelm me as I wish I could ask her if that cup I am washing before deciding whether to keep it or not meant something special to her – was that little nicknack given to her by somebody special – and I looked at the cactus on the kitchen window ledge. They almost died before I was out there and noticed they should be watered. Somehow that brought more grief—letting them die when I know mom really enjoyed growing things and especially those cactus.

Memories from our last few weeks together flood into my heart and mind—I remember when she said to me “I want to go home” and I really think she meant her house; but I told her she couldn’t do that. I wish I had not told her “no.” I think that is a part of what robbed her of that last bit of hope to cling to for her will to live to hold her with us. I heard her say that she wanted to go home, but somehow I did not really get the importance of that statement. I heard the words, but I did not hear her heart and I am SO sorry for that.

She wanted to be back in her familiar place, her “nest” with her things, her tea pot that she used every morning to make green tea for her and dad with its own little cloth cover, to be in her room lying in her bed so everything around her would be familiar and not strange like it was at the nursing home as her dementia grew.

We tried, Dawnmarie and I, to make that room at the nursing home feel like her space. We took the pictures in big frames and hung them on the walls to try to make it look like her room at her house . . . but, it didn’t really look or feel like her space. Her space, cluttered with her stuff, her blankets, her stuffed animals (not the new ones I bought for her and dad, it wasn’t the same, they hadn’t been hugged enough).

Every day after she made green tea and she and dad had their breakfast, she would go to that front bedroom and lay on the bed, watch her TV or read one of her books and dad would come and lay down with her after lunch for a nap time together. She would get upset if he did not come take a nap with her and she listened for him in case he fell since he had fallen a number of times since 2015 when he broke his neck.

I know there is no way mom could have lived in her house after October 2017, but it breaks my heart that I didn’t take her on short trips out of that nursing home after dad died. She was always the one who wanted to “go”—she was the one who pushed dad to travel while he was more willing to just stay home and stay in bed a lot.

Even when they traveled, he just wanted to stay in the motorhome and she wanted to go see the sights; it was always something she complained about and sometimes dad gave in and they did some sightseeing some place and she loved it!

All the “things” still in that house that speak to me of mom . . . not just the clothes, but the cup she drank her tea out of, the special plates she treasured, her Tupperware left from decades ago when she was an extremely successful Regional Manager in Raleigh, North Carolina, and earned many things for her house and even earned a car!

I wish I had been more present in the moments we were together, but life just seemed to always be pushing us toward something else that needed to be done or some place else we needed to be.

Before moving to the nursing home, Mom’s dementia caused her to express feelings of loss and loneliness in some Facebook posts she made, usually around 3 in the morning and I wish I had really heard her heart then. I did encourage her to write about their travels thinking that might bring her some joy just remembering those travels, but her arthritis made writing impossible and she said it hurt to type and she would get confused as to how to spell some words as her dementia slowly imperceptively grew, so I really needed to let her tell me what to type and we talked about doing that . . . but somehow, we never did that, we talked about doing that, but we never did it and then it reached a point where she could not access those memories so we never captured those special moments and . . . now we can’t.

In the summer of 2014 and 2015, my brother Clint and I took mom and dad on a trip to the annual Bible Camp in Ohio and, in 2014, on to visit mom’s sister Betty and on to Michigan to visit her brother Jerry and dad’s sister Bernice and his brother Lowell. In 2015, Carey’s Run church of Christ put on a special 70th Wedding Anniversary for mom and dad. It was our last trip together and I convinced mom to give the gun they carried in the motorhome to Clint because I was concerned she might decide to use it. She had said on at least two occasions that she had considered shooting dad and then herself because they were getting unable to do what they had always done and the only reason she had not done that was because she was afraid of just wounding one or both of them and then they would linger on handicapped more.

Before October 26, 2017, mom had burned up several pans she forgot on the stove when she was cooking, so it was becoming more dangerous for them to be alone at their house. I signed them up for “meals on wheels” so they could just pop a meal in the microwave, but she was not comfortable doing that, so the meals accumulated in the freezer out in the backyard shed and it became not safe for her to make that trek out to the shed to get the meals and she would forget they were there, so, other than the few times I was out there and brought in some of the meals, they went past expiration date and we ended up throwing most of them in the garbage.

Family was so important to mom and my brothers were only able to see her occasionally, so those became special times for her and dad, but, unfortunately my brother’s lives kept them both so busy, their visits were rare until close to the end of dad’s life.

Another bad milestone was when dad’s hearing got so diminished he could not hear on the phone and mom’s dementia worsened and she could not remember how to use the cell phone. So I had to take mom’s cell phone because her phone was the main number people called and she could not take book orders or even consistently remember how to answer the phone. I eventually had to take dad’s cell phone in case any calls came in on that phone. Dad raised a BIG ruckus and demanded his phone back, but I ran a test and proved to him that he could not hear anything on the phone, but he hated not being in control of yet another area in his life and he loudly complained about not being able to contact me so it was a huge issue—unfortunately, it was unresolvable to his satisfaction. In April, I started communicating with dad by using computer-generated signs I printed before I went up each day and eventually got a dry erase board. Dad’s final appointment with a doctor was for his hearing. He was convinced that he just needed to have wax cleaned out of his ears as had been done in the past, so when Dr. Hatfield told him his hearing loss was permanent and not just a wax build up, dad gave up. You could see it on dad’s face, he was defeated. That appointment was May 20 and dad passed away around 12:30am June 3.

Mom was holding his hand, but I do not think she had any idea that he had passed. We did not figure mom would live long after dad’s passing and it was so hard having her ask when dad was coming back or crane her neck looking for him to come in when we sat at the dining room table or when a man with salt and pepper hair came in and she would call out “Olan” – and look crushed when it was not him.

Mom had her last meal in the nursing home dining room eating reluctantly on December 20 . . . after that, it was a challenge to get her to eat anything. I remember the very caring staff at Oakdale would be excited to tell me that she had eaten 50 percent of her meal and we were all sad when it reached the point of her eating no breakfast and only 25 percent of her lunch and then it reached the point where I only got her to eat something when I brought her some lime jello I had made (her favorite) and then . . . nothing and she passed mid-day on January 18, 2020, my brother Clint’s birthday.

In my review of both mom and dad’s passing, I can see some things I didn’t really register the significance of at the time:

• dad’s primary life force seemed to come from his being recognized as smart and able to “win”—his value was in his performance

• mom’s primary life force seemed to come from her value to others—her value was in her giving

• July 22, 2017—The motorhome sale was an extremely traumatic event for mom. She cried after it was done and she begged before it was done for dad not to sell the motorhome. She said, “I know we will never get to take a trip again if you sell it.” Of course, we tried to tell her we could take trips in the car and, of course, that did not happen because of dad’s instability, his falls increased from 2015 and Clint and I were afraid we could not keep him safe if we took them on a trip after 2015, so mom was right.

Realistically, the motorhome was in such bad shape with major cab deterioration that we probably could not have used it for a trip again anyway . . . but, it was a symbol to mom that her life was over, at least the life she knew and loved, what made her feel alive.

I think that was why her main push after dad passed was to get a van and travel around to visit friends and family—that was a life she thrived in and that thought kept her going until December 2019.

• May 20, 2019—dad was forced to face his physical deterioration with his permanent hearing loss (some months earlier, he could not hold his guitar and play it with a group that came to the nursing home weekly and he refused to go down to the entertainment after his guitar slipped out of his hands) and, therefore, he would not be able to “perform” in any way, so he gave up, lost the will to live

• June 2, 2019—my brothers and I sat in their darkened room, room 404 at the nursing home that had been their home since October 26, 2017—we knew dad’s time was short. We sang hymns and songs that we knew mom and dad liked. Although dad had been almost totally unable to speak due to his trouble breathing,­ his dry throat, and his obvious lack of strength, he actually said “amen” after one of the songs—it was said very low, but it meant he had heard the songs and liked them. We thought it would be a couple of days before dad passed, so we left around 10pm to get some rest for the coming days . . . BUT, the call awakened me just after midnight June 3, 2019, from the nursing home that dad had passed and they had contacted hospice and the funeral home would be coming to transfer dad to their facility. I called my brother Clint and his wife who were staying at an RV park close to the nursing home so they were with mom when I arrived. I called my brother Chuck, but his phone was turned off so I was not able to let him know until later in the day.

• December 20, 2019—when mom accepted that she was never going to get a van and that she was never going to get to go to her home and, therefore, she would not be able to “give” to others, she gave up, lost the will to live

Mom’s way of “energizing” has always been going, being around others, she was a social butterfly and dad seemed to realize that and sometimes would get her out of being down by planning a trip for them when she pushed him about it. Dad really was a spark plug for mom, especially in their later years so dad’s absence was a major factor in mom’s life, a co-dependent relationship of ups and downs and of love/hate for 74 years left nothing in its place, a gigantic hole in every aspect of mom’s existence and she could not find any way to adjust to that emptiness.

• January 14, 2020—Mom was extremely nauseated and it seemed obvious that she would not last long. My brothers and I had spent some time with her at the beginning of January and met to discuss how we needed to proceed, but we were hoping for a few months to be with her before she passed . . . that was not to be.

My niece Aimee, a hospice nurse in Kentucky, made an emergency trip out to see her grandma (she was one of mom’s favorites from the beginning, so her presence gave mom comfort even in mom’s obvious gray dementia world). My niece confirmed that the end was near as our hospice worker had also indicated. While no one, of course, could say exactly how long it would be before mom passed, here again, we thought we had a week or so and, again, we were wrong.

On the evening of January 17, I decided to spend the night in mom’s room in case she needed anything (Janice left around 2am, I think) and the nursing home had moved mom’s “roommate” to another room and moved in a bed for me to rest on when I could. That night will forever be in my mind’s eye and my heart . . . there was nothing I could do. I just kept crying and praying but somehow holding to that totally ridiculous inner thought somewhere deep inside me that mom would somehow get through this and recover even though I knew that was not going to happen. In the wee hours as I sat there, the “death rattle” began and I called a nurse to get her opinion on what was going on and if anything could be done to help mom, to ease any discomfort she might be having. The nurse said there was a way to help mom, so she went to contact hospice for permission/instruction to give her a medication, some moisture but not anything that would cause her to choke, etc.

The nurse was very caring and came to check on us periodically. As morning came January 18, 2020, it did not seem to me that the night was gone as a darkness overwhelmed me, no conscious thought, just a heart surrounded by a dark numbness. A couple of the nursing home staff who had been involved in mom and dad’s care came by to comfort me and I collapsed several times into uncontrollable tears and groans. I wanted to release mom to be out of her discomfort but I did not want to let her go! There is NO deeper agony that I have ever experienced.

My brother Clint and his wife came and brought some Chick-fil-A breakfast and mid-morning it was decided that I needed to go home to take my medications and get a shower. My husband came and got me and we got some lunch before returning to the nursing home around 2:15pm. I think mom passed about 2:20pm just after Chuck left the room but it was about 2:25pm when Janice, my sister-in-law, said “I think she is gone.” I called Chuck to come back and put in a call to Hospice.

Around 2:55pm, the hospice nurse confirmed that mom had passed and the process began . . . the same one we had gone through seven months earlier with dad’s passing, but somehow this one was different . . . it was MOM and none of us were able to “deal” with it! Oh, we tried talking about things that needed doing and that kept us from crashing into that dark depth of grief that threatened to consume each of us BUT we each knew that just under the surface of our “calm” was an undertow of remarkable power . . . MOM was gone – the stabilizer through all of life’s traumas and storms, through challenges each of us had faced that she had brought us through, through life’s confrontations when she had been the supporting beam . . . MOM, somehow we never thought we would lose you ever, you wouldn’t leave us, we just knew somehow you would never leave us!!

Where do you throw the rope
• when the anchor it was secured to has been taken away . . .
• when those dependable repetitive words and actions that held the world together are silenced . . .
• when the base for family traditions are gone . . .
• when darkness fills the space where a light was always left on and the light switch operator has disappeared . . .
• when hope in the midst of the most traumatic scenes was infused by just hearing a voice . . .
Where do you throw the rope when the anchor it was secured to has been taken away?

And so . . . I am left with an “I WISH . . .” list
• of words I did not speak,
• of actions I did not take,
• of questions I did not ask,
• of times I did not fully live in the moment so I missed much of what was there,
• of hearing words but not hearing the heart of the one speaking,
• of missing the very opportunities I prayed for but was too busy to see were there to be taken,
• of ignoring signs that spoke of deeper needs in a loved one,
• of just giving simple loving support throughout all of life without analyzing the worth or value or whose agenda it was on . . .

and much more is on the “I wish list” and that is what makes the grief process so hard to get through since nothing can be done to impact what has passed and the loss is not measureable nor recoverable except as lessons for how to live the days ahead and how to apply the lessons to those tiny increments we measure as moments and those relationships we must consciously choose to treasure

the loss . . . not really able to put it into words — all the years of a “super inner” strength mom used to support us as children and young adults when we were only thinking of ourselves, all the years of surviving traumas most people do not have to live through but mom did and always with her focus on protecting us and others, all the years of her life that she willingly gave to others from sitting with a friend dying of cancer to months spent caring for her mother as she passed, all the years of giving love to her family, serving and supporting each family member and friend, all the years of reaching out to comfort anyone she thought was hurting with her words, her songs, her yodeling . . . the loss is undeniable . . . the loss is beyond words . . . the loss is beyond thoughts—it is pain wrapped in heart agony from a double-edged sword plunged into the depths beyond knowing, beyond feeling, beyond . . . just beyond . . .

Their funeral services were different – you could feel a difference if you were paying attention. It seemed easier to commerate dad’s passing and, I think, each of us felt the loss of dad but not in the same way we felt the loss of mom. Each of us struggled noticeably with speaking at mom’s service and only with GREAT difficulty were we able to get through the service for mom without a total meltdown.  It seemed like mom’s service was not a source of comfort nor did it bring a sense of closure for me. In fact, I think it delayed the process of confronting that grief for me because it was a public service and my grief was too private to express there, to allow that overwhelming flood of the realization of loss to begin might have been something impossible to stop . . . and I knew mom was not there to hug me and tell me it would be all right and there was no one else who could do that, who could feel my heart as it was breaking into a million pieces . . . I could not bear it . . . without MOM!

So – the “grief process” is different for each of us and
no one can say how long it takes to get to the point where the pain is bearable and the memories bring in comfort and joy for the time shared with the loved one . . .
no one can say how long it takes to get beyond the aches in the heart from the “I wish” list that overwhelm so completely . . .
no one can say how long it takes to reach the point where a “trigger of tears” becomes a “trigger of treasured times” . . .
no one can say how long it takes to move from grief of loss to loss of pain for my loved one . . .

the curtain has come down on the final act for my loved one and a new stage is being revealed slowly for me with space for the old and the new props, with scripts that review times past and doors to new times, and it seems I must choose where to place each piece to honor my loved one through the scenes yet to be and to show myself that the life of my loved one is going on in me . . . moment by moment as dark clouds shrink and sunshine grows to lighten my heart ever so slowly . . . healing will come as my love for mom will never die and, therefore, she will never be gone from me and the beauty of her memory will bring the healing to my broken heart . . .