What I’ve Noticed

I am not sure how all hospice protocols are, all I have to draw on is my own experience. Once mom came home I had hospital beds, oxygen and medications delivered to the home. There were instructions on how to combine medications to work on the symptoms she was showing. The oxygen is for when her breathing seemed “off” and I was shown how to operate the machine. There are mouth swabs that need to be moistened but not too wet. The bed has different positions and optimal ways to position the patient on the bed – with all the markings on the buttons wore off. I was given so much information all at once. It has been a couple of years since I went through this with my mother in-law and obviously I have not retained much of the particulars.

The reality is that I do not know what to do or when, how to decide which medication would work best at the time, if she is comfortable or just too exhausted to care. The nurse came back and walked me through it again, slower, so I could take notes. I feel more capable. However, what I have noticed is that mom’s restless legs normalize when I held her hand. The simple act of sitting next to her stabilized her breathing. Talking, reading scripture or singing to her brought a peaceful expression to her face.

Normally, sitting in a straight back chair for long periods of time would leave me stiff; however, while tired, I was able to be fully active and functional each day. I did have a stressful few moments when mom choked on phlegm that she was too weak to clear from her throat. In that instant my mind cleared and I remembered what the nurse said. I got mom turned on her side and she was able to breathe clear. Then I got her comfortable and put the pill for “secretions” under her tongue. She has been fine since.

Caring for someone you love is not a burden or an arduous task, it is an outward sign of the love you have for them. It is called “care giver” for a reason – the title is self explanatory. If the love and care is not present, can you really call yourself a “care” giver? Would it be called something else if you did not care for the patient?

LESSON: Do not let fear of the unknown, or of death itself, rob you of the blessing of walking a loved one Home. There is no greater honor and it eases them in a tangible way.

Helpless

There is no other time in my life that I felt as helpless as I do now. Sitting by the bed of a dying loved one is gut wrenching. I have no doubt that she is going to a better place. At this time, she is in no pain but the way she looks at me rips my heart out.

She can talk, occasionally, but not continually. Rarely now she will summon energy to reply when family calls, but responses are short and words are hard to find. I will ask if she is thirsty and she will nod or shake her head. Sometimes she will say she needs something but, due to Alzheimer’s, does not know how to ask or even what she wants. Usually it is toast, her normal go-to when ill, but she can only handle a bite or two now.

It is the pleading look in her eyes that breaks my heart and brings tears to my eyes. It is as if she is begging to go Home. God’s timing is perfect, I know that in my soul. She is ready in her soul to leave this world but her body seems to be holding on.

I keep looking towards heaven begging for Him to take her. She was so strong and self sufficient. Her desire was to go quickly and not be a burden to anyone, especially family. I do not consider caring for her any form of a burden. However, if I were in her place, I would be heart sick to just be hanging on.

As I was tending to her in the wee hours, I asked her “Is today the day you go to heaven to see your Sweetheart?” Today she said, “Could be.” But her breathing is strong so I am doubtful.

LESSON: Many people, because they care for you, will give advice on what to do or how to do it, ignore it. Follow the medical staff and your gut – especially if the patient is a loved one – you know the patient’s preferences best.

The Long Goodbye

This is the term given to Alzheimer’s Disease because you loose a bit of the patient every day. Each day you say goodbye to another part of them.

Mom was admitted to the hospital due to lethargy. When a UTI was ruled out for the cause, the barrage of tests began. No infection to be found. Then the rolling fevers began. Still no answers. One week, to the day, she was released to in-home hospice with no diagnosis. My sister flew in that night. She had already planned to come for Thanksgiving, the timing was perfect. I was able to lay in a bed and sleep, a task I had not done in a week, while my sister cared for mom.

There has been no major change in mom’s health. She sleeps over twenty-two hours a day. Today her speech is a bit slurred, when she is awake to talk. I am not sure if the slurred speech is due to fatigue or if she has had a TIA (“mini stroke”, which she has had in the past). I am learning that dying, just like Alzheimer’s, does not have a set pattern. There is no check list so that you can prepare for the next step in the process.

I keep reminding her that her children are all safe and will do well. That we will take care of the babies in the family and not ignore the “old folks”. I encourage her to go on to see her Sweetheart, my daddy. She smiles whenever I bring him up. It is NOT that I want her to die, it is because I love her. The ache in her heart since daddy died has increased over the years. Of late, he is all she thinks of or talks about. Everything reminds her of him. Because I love her, I wish her well and am doing what I can to help her say goodbye to “here” and hello to “forever” – no matter the pain it causes me.

LESSON: Not everything is about you, nor is it all about the patient in your care. Learn to recognize the moments that are and make them as full and meaningful as they can be.

The Dreaded Word

Hospice. One of the doctors actually used the word regarding mom. Part of me was steadying myself for that possibility; however, when the doctor actually said it, all the air left my lungs and tears filled my eyes. Has she really gone that far?

Mom has been with us for thirteen months. She left everything she knew including all her doctors. She had to leave the town she lived her entire life in and raised her children in. She left all the familiar places that held memories for her and the home that held so much love for over sixty years.

When mom moved in with us, we were in the middle of a whirlwind. Covid was full force. My oldest son had to “rethink” his wedding three times due to “protocols”. The wedding plans finally came to fruition the summer before. Our youngest son was married locally two months after she moved in, then Thanksgiving, then Christmas, then her birthday, then the visits with the grandchildren began. We stayed busy.

October was daddy’s birthday and their anniversary. I think her trip down Memory Lane began then. A friend from my childhood stopped to visit on her way through town about a week ago. We all relived memories from our youth, many included daddy. Mom showed off her apartment which included pictures of daddy. In hindsight, I realize that this is when her lethargy began in earnest. Mom had been talking about daddy a lot more the previous week, the pictures of daddy intensified her talking about him. If she saw someone on television they reminded her of her sweetheart “only not as cute”. One day I went into her bedroom and she had his framed photo in bed with her. She was missing him more and more.

Mom has been asleep for most of her hospitalization. I have stayed with her 24/7 with the exception of when I went home to shower and my husband stayed. Mom did stay awake a few times long enough to talk on the phone.

Today, however, with mom asleep in her hospital bed, I was talking quietly on the phone. We had the television on the Hallmark channel for background noise (mom’s favorite channel because everything has a happy ending but mainly because the sound level stays consistent between programming and commercials). Out of nowhere mom laughed loud and full. It startled me and I turned quickly. Her eyes were wide open, a rare sight, and they held a distinct sparkle. She was looking up – not straight up and not at the television. Only a moment later she was sound asleep and breathing deeply. What made her laugh? What was she looking at that brought that sparkle?

I firmly believe that as we draw closer to Home our loved ones that have gone on before gather round to urge us forward. I have been with family, and others, that talk to a deceased parent, spouse or other loved ones that have died. My husband’s Aunt, while nearing the end of her life, asked me if I could see “it”. I inquired what “it” was. “The Feast, it is beautiful!” I told her to save me a seat, we left and she was in Glory the next day. I believe mom saw daddy that night and he made her laugh like he always did here on earth.

I am sitting next to mom’s hospital bed as she breathes soft and steady. I am waiting for the hospice coordinator to come talk specifics with me. I still hold out hope that once home she will rebound, even if the doctors do not hold to that hope. All I know is that her life is in God’s hands and His timing is perfect. If it is her time to enter Glory, her Savior and sweetheart will be there to greet her. I will miss her whenever she goes but I will not begrudge her reuniting with the one that formed her heart and the one that won her heart so many years ago.

LESSON: Love hard and love till the end. If there is no pain in loss there was no heart-investment prior to.

First of Many?

My first hospitalization as mom’s caregiver. She has been lethargic, a major sign of a urinary tract infection (UTI). I took her to the doctor and, after tests, there was no sign of any kind of infection. They were stumped. On to the emergency room and we waited to be admitted (over seven hours of waiting before we were in our hospital room).

Mom has always been a fighter; however, in the last few days I see no spark. She is very docile and, in all honesty, a bit of a “wet noodle”. That, above anything the doctor tells me, has me worried. She has been so focused on daddy lately, constantly talking about him. On her “good mind days”, she constantly apologizes saying she never wanted to be a burden. I assure her that she has never been, in any way, a burden to her children. All that has me concerned that she is just giving up. Lord, please give me strength.

I walked this road not too long ago with my mother in-law. I have no doubt more ER and hospital visits are in our future. My one prayer is that mom has little pain and discomfort going forward. I can only do so much for her. She has health issues that will, most certainly, grow worse over time. My heart aches for her for the next steps of her journey. My hope and prayer is that daddy’s face stays before her to give her strength and courage. As her daughter, I pray her pain is limited or non existent.

Whether she is in hospital for a long stay or short stay, or if God calls her Home in the near future, I will be by her side and strive to be a light in her day. I will be wishing with every breath that I can remove any burden she has and maybe get a giggle or two along the way.

LESSON: Stay positive, do not borrow tomorrow’s trouble. Being a caregiver has enough “bad days” so increase the good and happy moments as much as it is in your control to do so.

How It Feels

Being a caregiver has a full range of emotions that go along with the job. The emotions are more intense when you are caregiver to your mother. No matter how much you love your parent, there is a bit of baggage that comes along, sometimes by surprise.

I always felt my mom was hard on me growing up. I sometimes felt that she was pushing me to be something or someone I was not. Most of my friends feel the same about one or both of their parents. Mom was also good at “pushing my buttons” and I never learned how to protect those “buttons” so I would not react. Dementia has softened her some but she can still get a rise out of me – sometimes intentionally.

The feeling of being cut off seems to be common with other caregivers and it is intensified during a pandemic. When you add emotional baggage and upcoming holidays to that, sometimes the loneliness can be debilitating. But, because you have duties, you push through and do what needs to be done. Chin up, shoulders back and go. Being busy can be so helpful and a great distraction.

People that have never been a 24/7 caregiver have no concept of what it is truly about. However, since everyone’s journey is different, another 24/7 caregiver’s journey will be different. Therefore, to have no one that truly, completely understands your journey only magnifies the feelings of isolation and loneliness.

To add to the emotional baggage, a friend came to visit. Due to circumstances, she arrived later than I hoped and left earlier than I wanted. I didn’t realize how much I was longing for that slice of the “normal past”. The abbreviated visit left me deflated. On top of that, mom’s health took a turn today and I went down the rabbit hole a bit further.

I keep telling myself that this is temporary and mom will be gone one day. I will try to focus on the happy times and enjoy the memories her dimming memory latches onto. She often talks about daddy like they just met. He was her joy and North Star and basking in that love brings me joy, peace and comfort.

How would I describe being a caregiver? Each caregiver will have their own definition but I have no doubt that the entire emotional spectrum will factor into their response. Your journey will be based on your past, present and future expectations; however, attitude will be your largest factor.

LESSON: Stop living in the textbook definition of caregiving and dementia (or how it was with a previous patient) and simply love. Love rights wrongs, soothes all that is broken and heals old wounds. Just love.