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.

Exhausted

For a week I was the sole caregiver for two three year olds, one nine month old and one dementia patient all at the same time. While the kids kept me on my toes all night between bottles and potty trips, my days were all about the challenges of the dementia patient.

Many good memories were made for the kids but I am unsure what, if anything, mom will remember. We had outside toys IN the house due to bad weather. The kids tried new foods. They had special privileges that they do not usually have, like watching a movie on my phone in bed. They seemed to enjoy their visit. Mom stayed exhausted. She had no naps and constant stimulation. She did go to bed at seven each night, when we went upstairs for bath and bed.

Shortly after their mom and dad left with the kids, my mom went to bed and slept until supper. I did a light supper for her in bed and she went right back to sleep. We both stayed in pajamas and napped for the next two days. I am not sure you can ever “catch up” on lost sleep. We remain exhausted.

It is hard to stop being a mom. I find I am now mom to my mom. She usually is good natured about it but there are times she rises up and digs in. Our biggest “battle” is over water. She claims she drinks too much but her nephrologist says she doesn’t drink enough. The battle wages on and a truce will only be called when we are with the grandbabies again.

LESSON: Do not let challenges of being a caregiver keep you from loved ones and having fun. A few minutes of distraction will do your soul good.

A Day in the Life

Mom got egg yolk on her footstool, I am not sure how. She asked where the “cleaning stuff” was. I directed her to look under her kitchen sink for a can with a brush on the end of it. She came out with a spoon and was scraping the fabric on the footstool.

So many questions. First, was there a spoon under the kitchen sink? Second, did she think she could scrape off a stain with a spoon? Third, how could she miss the can under the sink with so few items there? Was she even able to locate the kitchen sink?

Mom has issues recognizing items, shapes and colors. This is something I did not have to deal with when caring for my mother inlaw. She forgot names and had trouble remembering what happened the day before. My mom has issues navigating through a simple day at home. She goes to the kitchen only to discover there is no toilet in that room and then back tracks to find the bathroom. She takes dirty clothes from her hamper and hangs them up. She fries eggs and then puts them in the refrigerator “for later”.

A day with mom is an adventure and every day is different. I hit the floor every morning with a bit of trepidation and a lot of love. When my father was in his last days I made him a promise: We will all be sure to take care of mom in a manner that will honor and please you. My goal each day is to honor that promise.

LESSON: Do not let expectations of others, even the professionals, direct your steps. Some days it is far more important to just sit and be with your patient. Release the guilt others place on you.

The Hazard

Being a caregiver has its rewards but it also has its hazards. The largest hazard is to the marriage of the caregiver.

My husband had to sacrifice time with me when I was caring for his mother. In my opinion, it was not a huge sacrifice because it was for his mom and he shouldered some of the “duties”. Now, however, it is my mom claiming time and energy.

His mom enjoyed watching football, so he would go into her apartment and watch with her. That was time I could spend resting, going out with friends or doing chores. My mom thinks watching sports, of any kind, is “just a lot of noise”. Therefore, I am in mom’s apartment watching television with her while my husband watches his programs alone.

Every place we go, mom is with us. We do not do “date night” any more because we are not comfortable leaving mom alone especially at night due to Sun Downers. (*)

His mom was in her apartment for years before she was engulfed by Alzheimer’s. Before the doctor said not to leave her alone, his mom stayed by herself for short periods. I could make a sandwich for her, leave it in the frig, call her to remind her to eat and she was safe and happy.

My mom has only lived with us one year and she still gets confused on where the kitchen is. She does not recognize items most days, so trying to get her to find the refrigerator can be impossible not to mention a sandwich inside of it. The largest issue is the television remote. She will accidentally turn off the television and cannot figure out how to turn it back on. If mom is home, her television is on. When company comes over she will mute the television but seldom can she be persuaded to turn it off.

I am still trying to work out a schedule and structure but with none of mom’s family around and my kids leading very busy lives of their own, I feel a bit isolated. There are professionals that can be hired to sit with her but I know that would not be comfortable for mom.

I feel left with no real options for mom. I am her only caregiver and see no alternative that would honor her going forward. This will steal time away from my husband and alter or remove time spent with my children. I do feel that mom would make the sacrifice for me and I feel bound to honor my promise to my father, to care for mom. The question remains: What will be the cost?

LESSON: Learn the preferences of the one you are caring for, it makes for a clearer path for you and a happier patient. The preferences of the caregiver may need to be put on hold, for a season.

(*) Sundowners

Changeable – Routine

Oxymoron: A figure of speech in which apparently contradictory terms appear in conjunction (example: pretty ugly)

This term, oxymoron, perfectly describes the lifestyle of a caregiver for a memory patient.

• We have a routine; however,
• The routine is routinely changed.

I keep medications on a strict schedule and stay as close as possible to a firm schedule on meals. However, mom’s state of mind alters our plans. Mom’s state of mind depends largely on how tired she is.

Today she would only agree to eating toast for breakfast and is sleeping through lunch. I will wake her soon and try to tempt her with hot food. Her energy level, predictably, increases on a full stomach. However, I doubt her energy will increase enough for her to agree to her shower which was planned for today.

Yesterday we were with three of the grandkids for just a few hours. Babysitting on the heels of recent travel has drained mom of her reserve energy. I had plans for tonight and may need to change them. Also, supper will need to be altered. Her stomach is more delicate when she is tired.

It seems like little changes but when you are constantly making “little changes” your world seems to stay off its axis. For a person who schedules her life, it is my largest concession to being a caregiver to a memory patient. Not one single day has gone to schedule. But the goal remains constant: keep her safe and let her know she is loved.

LESSON: Planning is a good place to start but plan for change. Stay fluid and remember the goal.

Back to Real Life

“How do you do it?” A frequently asked question when people learn that I am a caregiver to a memory patient. This is the second time for me on this road, which tends to bring more amazement.

I did not choose this road or lifestyle, either time. If I were to choose a career path for myself, this would not be it. Yet, here I am..again. The only one that “saw it coming” was God. He knew where I would be, knew the course my life would take and prepared me for it. That does not, however, make it any easier to live my life.

Most people do not choose to be a caregiver, the lifestyle is thrust on them because the need arises in the life of someone they love. Due to the unforeseen nature of the lifestyle, in most cases, there is little preparation prior to the duties beginning. It is, basically, on-the-job-training.

It is good to release control of the memory patient on occasion and just be “me”. To get up when I’ve slept enough. To eat when I am hungry. To be able to sit and enjoy the company of another human that doesn’t “need” you for anything. Those brief moments when someone else is in charge and you can exhale are cherished moments.

For a few days I was just me. My husband and I were with our eldest and his family. We were loved, appreciated, pampered and free from obligations or demands on our time. My only duty was to decide what to wear each day.

I knew mom was safe and being cared for. However, I found myself wondering if she was comfortable and happy in my absence or afraid or even confused.

There is no “winning” in caring for a memory patient. However, knowing they happy in that moment is a great accomplishment and I will take it as a win.

LESSON: Adjust goals to be more realistic. A sigh of contentment can be greater than progress.

My New Mantra

Why am I feeling guilty?

I am sitting in the airport waiting on a flight to go see our youngest grandchild. Mom will be spending time with my sister and brother for a few days. I flew with mom to the airport near my sister. I walked mom out to my sister’s car then trekked back into the airport to catch this flight. I did the responsible thing. Mom needs to spend time with her other two children. She will be safe, happy and comfortable. However, I still feel guilty. I feel like I am letting mom down.

Mom needs a break from me. I need a break from mom and the ridged routine we have – a ridged routine was highly suggested by two of her physicians. It is healthy. That is what all the books and blogs say – a schedule gives the memory patient consistency and comfort. Doctors and books also say to the caregiver “get away and restore your spirit” – “you cannot pour from an empty cup” – so many platitudes. In my head I know it is healthy and yet I still have a knot in the pit of my stomach.

I have been texting friends who have walked a similar path and each of them has different advice – most of it conflicting. Basically, each of them had their own unique experience in being a caregiver. Only one had a twinge of guilt when leaving their parent with someone else, even a sibling.

You must get away occasionally. You will be better for it and your charge will reap the benefits. I keep saying this over and over to myself.

However, the knot is still there. Perhaps the giggles of my grandbaby will help.

LESSON: Invite God into your caregiver relationship. He is a great listener and will lead and uplift you. You are not super human, lean on Him.

And Then It Was Quiet

We had a busy and eventful two weeks. My aunt flew into town. She spent some time with us then we all loaded up in our vehicle and left for an out-of-state wedding. The drive took longer than the map app predicted – traffic, weather and old kidneys were the factors.

When we hit town, we picked up my sister from the airport and she joined our merry group. On the day of the wedding, our youngest and his wife were added to the condo we rented. It was a fun time of visiting and sharing the wedding events of my brother’s youngest. We were going non-stop the entire time and created so many memories over the three days. The sad thing is that mom may not be able to retain those memories.

The wedding was beautiful and the bride looked like the cover model for Bride Magazine. The groom was GQ worthy. The wedding events went without a hitch. It rained, but only while we were inside eating supper after the rehearsal. Both families blended seamlessly and there was a wonderful fellowship among us. Even mom felt it and commented on it. She loved seeing my brother’s three girls. It had been many months, and years for some, since she was able to hug them. It was good for her soul.

Two days after the wedding we were blessed to have my brother, sister in-law, their middle child with her husband and three children join us at our home. They stayed for just under a week. We had the best time. It was a time to decompress and relax. My daughter came with her three children to visit one day. Mom loved holding the babies and seeing the older children. She has greatly missed my niece’s children since they moved cross country. We were able to celebrate my sister in-law’s birthday together and share many meals together. Mom had trouble with names but she covered well.

My brother caused the most confusion for mom. He was her brother, her husband and her son depending on how tired she was at the time. The children’s names eluded her but I am sure they did not notice. She continually referred to the baby boy as “she”. Overall, it was a wonderful visit for mom and she interacted with everyone. She was happy and loved having the hustle and bustle of so many in the house. Each night she would smile and say, “Wasn’t this as good day?”

Then they left and the house was quiet.

Not napping for two weeks, not having a regular schedule during that time or even putting her feet up daily, took a toll on mom, as did the sadness that comes with an empty house. Her feet were swelled and she was exhausted. She had no concentration and kept asking when was she going home. She finally went to bed, after much coaxing by me. She had lunch and supper in bed and slept between each meal. When she was awake she was sure it was the next day proving she slept hard till woken. I am sure she will need a few days of down time but then she will be up and running again. She pushes through when we have company or go places; however, once it gets quiet, she falls apart. It can take days before she is fully recuperated. After going non-stop for two weeks she may need the same amount of time to recover but we do not have that luxury. Another trip is already planned.

Mom may not be able to retain much of the last two weeks but she was happy through it all. We took loads of pictures to remind her of the events and people that she shared that time with. We will have memories of mom with her grandchildren, her great grandchildren and the beautiful wedding ceremony. We will remember mom’s funny off-the-cuff comments and the time we spent with her – even if she may not remember. It was a perfect two weeks with family and we pray we can do it again soon.

LESSON: Do not try to make the moment perfect, beauty is often found in imperfection. Grasp the moment and love out loud because too soon it will be quiet and the regret of not sharing love will fill the quiet.