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.

Something’s Wrong

Have you ever had that sudden sinking feeling? You know, the feeling that you forgot something horribly important? The feeling that wakes you with a jolt in the middle of the night? It literally makes you sick because your body reacts to that sudden shock.

We have all experienced this. You are in a meeting when you realize it is your day to pick up the kids from school and you are late already. Or, you are pulling into the neighborhood when your phone reminds you it is your wife’s birthday. We have all had that sickening-all-is-not-right feeling.

Your adrenaline surges through your body which causes lightheadedness and nausea. Sometimes your skin burns while your extremities tingle. It is like riding a roller coaster for the first time – against your will and blindfolded.

I had that experience when I went out West to visit my son and his family. Spoiler alert: No one was harmed in the making of this story.

While visiting my son I ran an errand. I entered the store when I was overcome with that sickening I-forgot-something-important feeling. I panicked! What did I forget? Did I lock the car? Did I lock my keys IN the car? Did I forget my wallet?

I forgot my mask!!! My stomach rolled over.

When I looked up, no one was wearing a mask. No one! I was stunned and felt vulnerable. I actually was fearful that “something bad” would happen.

I wore my mask through the airport, on the entire flight and as I exited the airplane and made my way through another airport. I was so relieved when I was able to remove it. It has become part of our wardrobe and most of us feel naked without it.

How easy it is for us to get conditioned! Constantly being told something is truth or factual can cause us to believe a lie or half truth. We alter our lives by what we believe to be truth. How are we to know truth when we so often are told that lies are truths and truths are lies?

Who is correct in their approach to this virus? What actually is the truth about masks and the protection they offer? Is it a conspiracy or a true pandemic?

LESSON: Do not let others, no matter their position in society, convince you to stray from your convictions. Truth remains true.

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

I Am Shocked

It has been thirty-four years today since my YaYa Graduated to Glory. (Four days before my parent’s anniversary and less than two weeks from my Daddy’s birthday.)

It is hard to believe so much time has passed. She had a long, horrific and painful fight with cancer. My mother moved her from Florida to Michigan when doctors declared it would be a very short time left for her on earth. Mom flew with her and Grandpa drove so he would have his car when he arrived in Michigan. Mom had a hospital bed waiting for her mother set up in my old bedroom. She seldom left YaYa’s side. We all swooped in to visit with YaYa and then to say our goodbyes.

YaYa, due to pain medication at the end, revealed many secrets to my mother. Stories of family members, friends and my Grandfather. Some revelations answered questions mom had, some made her smile in memory and some devastated mom. My mother did not show any emotion when YaYa spoke. Mom could tell that she was unburdening herself of secrets kept. Mom passed on some of these revelations to us but, I am sure, not all.

When we are the caregiver, we must release some things and secure some things. We release to changes we cannot control and we secure things that, if revealed to another, would only bring discouragement or pain.

Mom, when in a talkative mood, has revealed things to me that have shocked me, others brought a smile and some have brought sadness – for me and for her. The one thing that never changes is how loved she felt due to my father.

Mom and Daddy were madly in love until his last breath. His love carried her through valleys and healed old wounds. She forgets more every day but not the love. When she sees a picture of my Daddy she always says, “There is my Sweetheart!” I have no doubt that when she takes her last breath she will utter “Hello Sweetheart” on her exhale to my father who, I have no doubt, will be reaching out to her.

Sweethearts forever

LESSON: Live your life so that your last breath still holds hope and love.

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.