Caregivers

Grace uncommon, part 13

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It was the scariest night I spent at Aunt Grace’s.

Aunt Grace lived in the same big farmhouse her whole life. However, the family business replaced the farm that should have been next door. My great-grandparents built the house in the early 1900’s. At one time, the unincorporated town that she lived in was bustling and alive with businesses, families, and even a train that ran through the town.

The town grew old right around the time Aunt Grace did. A lot of the major businesses pulled out of town leaving behind vacant buildings. Big old houses, the old grocery store, the dance hall in the bar, and even the old bank that Grace worked at were turned into cheap apartments. Weeds grew along the creek that trickled through town instead of flowers and freshly mowed grass like before. The family business shut down and the windows were boarded.

Aunt Grace’s house was always cold and drafty in the winter. Her house was even cool in the summer. She didn’t have A/C. She didn’t really need it. I remember it being a hot summer night that eventful evening. We slept with all the windows open. The kids and I stayed with Grace during the week without Paul because he had to work the next day. Even though my dad didn’t seem to mind staying up all night with Grace during the week, he sometimes needed a break.

That night after I put the kids and Grace to bed, I settled myself in on the couch outside of Grace’s bedroom. I awoke to shouting in the middle of the night. I looked out the window to see four men violently fighting outside under the street light. Punches were thrown. Men were dancing around in a bloody ballet. Does someone have a knife? What am I going to do? Will I witness a murder tonight? I have to call the police. But how am I going to dial Grace’s old rotary phone in the dark?

I am very afraid. If they hurt each other, what could they do to us? What if Grace wakes up screaming like she usually does? What if the children wake up crying? I feel vulnerable. I can’t protect anyone. I can’t get to the phone. I’m afraid to draw attention to the house. Don’t turn on the lights. All the windows are open with only a screen keeping them out. I am afraid they will see me watching in horror. I am afraid they will hear my ragged breaths.

I watched for those minutes that seemed like hours. The men stagger away into the darkness no longer under the street light. Do they linger in the backyard? Do they mean any harm? The adrenaline pumps through my veins preventing sleep. I can’t believe what I just saw.

Aunt Grace slept most of the night.

Grace uncommon, part 12

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I remember it being a very difficult weekend. It probably would have been in the top ten worst weekends of my adult life. But who wants to keep track of such things.

I don’t think that I could adequately describe how it feels to take care of a loved one that is suffering and dying from dementia. It was different from being a caregiver for my autistic brother, Matt. Sure, they both had good days and bad days. With Grace it was a gradual decline. Most days I didn’t recognize her anymore than she recognized me. I grieved for her while she will still living because she was already gone.

I was exhausted to the point of where I thought I could no longer hold on to the loose strings of my sanity. I hadn’t slept. Dealing with sleep deprivation was never a strong suit of mine. My patience was running thin. I was worn down.

It was one of those weekends that Aunt Grace was up every hour during the night. I “slept” on the couch right outside of her bedroom. Just when I was almost back to sleep, she would be up again. The kids would be up in a few hours and I hadn’t slept yet. I was having a hard time.

As I was walking with Grace to the bathroom, she looked right at me and asked me my name. I replied, “My name is Alissa.” Aunt Grace looked at me and responded, “I once knew a girl by the name of Alissa. She was a very kind and caring girl. I think that if you met her, you would really like her.” She was talking about me without knowing who I was.

I think at that very moment, God was looking down upon me with mercy. He gave me a glimmer of light to help guide me down a dark road. It was such a meaningful blessing to me that it motivated me to finish the race strong. It was exactly what I needed to get through.

I will never forget that moment.

Grace uncommon, part 11

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And then one day it happened. Grace did what she always told us not to do.

Aunt Grace told everyone not to get old.

My parents took Grace to the doctor for a check up. She failed the dementia test. Soon after that, she was no longer able to take care of herself. My dad, despite all of his shortcomings as a father, was great with his elders. He became Grace’s primary caregiver. He stayed with Grace every night, except on weekends. My autistic brother Matt still lived at home and my mom worked full-time. At the time, I was staying home with my three kids that were between the ages of 4 and 9. I became the day time and weekend caregiver. One other caregiver worked day time hours and another did weekends. 

Aunt Grace needed 24 hour care. The evenings were especially grueling since Grace would wake up at the minimum of three times a night to go to the bathroom. Some nights she was up every hour all night. She would scream until someone came and got her up. Over time, we tried sleeping pills at night. She would still wake up agitated and try to get up but be very uncoordinated. Sleeping pills were not a good option. 

So the weekends I spent there, I was up all night with Grace getting at best a few hours of uninterrupted sleep. Then my kids would wake up early. I was so exhausted. I had to be within two rooms away from Grace at all times because she would try to get up from her bed or rocking chair by herself and fall without assistance.

It was difficult to do with the kids because although Aunt Grace could not see well she had great hearing. If the kids made any noise at all, she would call them over so that she could flail her arms at them. She would yell at them and try to hit them. I often told the kids to leave her alone and set up a play room for them at the opposite end of the house. I find it sad that they remember her as a crabby old lady, not knowing the wonderful person she was before the dementia took over her person.

We spent a lot of time together. While we sat with Grace I helped my oldest daughter with her multiplication facts. Aunt Grace was a math wiz. She always jumped in with the answers before Angel could. But she didn’t remember our names. She didn’t know who we were. I spent a lot of time scrapbooking nearby. It was a time in my life where I was forced to sit in silence and reflect a lot.

By the time I became Aunt Grace’s caregiver, I had a lot of experience. Not only did I have 3 kids of my own, I  provided care for my autistic brother. I worked my way through college as a caregiver for an older gentleman with paranoid schizophrenia and an elderly woman with dementia. So it really didn’t bother me that I also had to bathe Aunt Grace. After awhile when she could no longer stand in the shower, I helped give her sponge baths. She was pretty angry with me for bathing her since she was always cold. Even on the warmest summer days, she needed her electric blanket turned on high. 

Our goal was to keep her at home as long as we could. It wasn’t easy because she was no longer the Grace that we remembered. In retrospect, even though it seemed like a long time while we were going through it, it really didn’t last that long. Plus it felt good to know that we did everything that we could to be there for her in her darkest hours even if she might not have realized it. 

The travel diaries, Omaha

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The story of how we ended up in Omaha one year during Thanksgiving winds around a rocky path. Before Paul and I met, he was best friends with Dwayne. Dwayne was a man that looked like what you would picture Jesus to look like. He had rugged good looks with shoulder length brown hair that glowed a perfect shade of brownish red in the sun. He was a smart man who loved to discuss philosophy, theology, and psychology. He was fun loving, liked to joke and play cards. But Dwayne had one major personality flaw that inevitably led him down a path of destruction unaware. Dwayne would do anything for a dare.  One night while camping with friends someone dared him to dive off a dock near the campgrounds. Dwayne accepted the dare and dove into water that was only a couple of inches deep. Instead of costing him his life, it left him paralyzed from his neck down.

Before his accident, Dwayne had married his high school sweetheart too young. They had two children and divorced. When Dwayne had his accident, he was with Tammy. I met Dwayne a couple of years after the accident while he was with Tammy. Now Tammy was an evil person. But you know how it goes when your best friend dates someone you don’t like, you tolerate that person. Plus there was never a dull moment with Tammy around.

Tammy had some major character flaws herself. First, Tammy liked to steal things. Once when we went out to eat for Dwayne’s birthday, Tammy went around to every table and took the fake flower displays. She shoved a stack of fake roses into her purse. When it was time to leave, the manager told Tammy she needed to give the flowers back which caused her to make quite the scene. Nothing unusual for her. 

Second, Tammy liked to cheat. Tammy had two sons, one that she had with her ex husband and the other with Dwayne after the accident. Ok, there was absolutely no way that Dwayne could have fathered a child as a quadriplegic, but he was listed as the father on the birth certificate. One year at Christmas time the true story came out about her other son as well. Tammy and her ex were fighting on the phone while we were there. She told her ex that the boy that he thought was his for the past 10 years wasn’t his son, wished him a merry Christmas, and hung up on him. Tammy was just being Tammy. Tammy eventually got together with Dwayne’s caregiver and moved into the apartment next door. Her bedroom and Dwayne’s bedroom shared the same wall. He could hear them at night. Then she tried to keep his “son” from him. Tammy was not a nice person.  

Parenting was very challenging for Dwayne as well due to his handicap. One time when he was still with Tammy, Dwayne and their baby accidently got locked in the van. It was twenty below outside and they were locked inside the van without heat. This happened over the weekend. Tammy was desperate to find someone to unlock the doors. Dwayne sat inside helplessly watching. It could have gotten dangerous really fast. Dwayne also had issues parenting his two older children. His little girl loved to sit on his lap but he could never hug her back. He couldn’t drive them anywhere or do anything. It was at this point that I saw Paul play the part of dad. He took Dwayne’s son Dan fishing, a hobby that he used to share with Dwayne before the accident. We took the kids to the zoo and had them stay with us sometimes. When I first started dating Paul, it was attractive to see him being a positive role model for the kids. He still was caring towards his best friend even after his friend made some terrible mistakes in life. He also had no problems treating his friend like a regular person, going out with him even if it meant emptying his bag or feeding him. He was not squeamish, nor did he complain. His compassion was touching.

Dwayne was the best man in our wedding. A couple years later, Paul was the best man in his wedding. His new wife had some major flaws, like having an absolute filthy house and allowing her children to run wild. But I have to give her credit for marrying a man that she would never have a physical relationship with and had to care for. Six weeks after he was married in his church, Dwayne was buried there. He had a heart attack and died in his 30’s. He will be gone for 15 years this year. What an avoidable tradegy that affected so many lives.

Fast forward time a bit more, Dan grew up and asked Paul to stand up in his wedding in Omaha. He wanted Paul to be there to represent his father. We flew into Omaha for the wedding over Thanksgiving. Dan’s in-laws welcomed us like we were family. We ate Thanksgiving meal there and played a lot of games. They seemed to have a very close knit family. His wife’s father was dealing with cancer. He showed us pictures of himself, a big guy at 300 lbs before cancer. He lost 200 lbs and was skin and bones. At this point, I want to tell you that everyone lived happily ever after. Unfortunately things didn’t go as planned. Dan and his wife moved across the country. He was in the military and was deployed overseas. During this time, Dan’s father-in-law passed away. Dan’s wife moved back home and the marriage fell apart almost a year later. But while we were in Omaha, everything was pleasant.

While we were in Omaha, we met up with one of my best friends from college. She took us to the Omaha zoo. It was hands down the best zoo that I have ever been to. It had an open concept. You didn’t get the impression that the animals were unhappy in their cages. The aquarium was my favorite display as it submerged the viewer in a tunnel surrounded above and at all sides with beautiful water creatures. Great job in your design Omaha zoo. I just wish the marriage turned out as well.

My soul is worn thin

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Do you ever have one of those days or long extended weekends where everything seems to go really wrong? Yeah, me too.

I tried to login to talk about this earlier, however my account seemed to be frozen. I imagined hackers who got into my account because I posted of my recent upgrade which means that I used a credit card. It really isn’t too far fetched because one of our credit cards did get hacked last week. I decided to really go nuts about security. However, what I didn’t know was that being secure would take so much time. I had to pick up my daughter from the bus drop off point. I imagined her sitting outside in the dark with wind chills below zero freezing because I needed to feel safe.

Oh it gets much worse. Friday night I came down with a cold. I’m sneezing with watery eyes and a runny nose. Saturday I heard that my neighbor and friend was very sick in the hospital with pneumonia. On Sunday she died. But she wasn’t the only one that died that day. Matt’s long term previous caregiver also passed away. I spent most of the day a crying miserable sneezing mess. Then I spent the evening at my son’s concert looking like I lost my best friend.

I was feeling very overwhelmed with my neighbor’s passing. She was a couple of years older than me and left behind two young children. It was unexpected. It was horrible. I am still in shock. We had made plans this week, now I am planning on going to her funeral. So I wrote a really touching tribute to her on facebook. This was problematic in and of itself. People don’t know me as a writer, this is still a secret life for me. I wrote it in such a way that people thought that she was like a best friend to me because it was so personal and touching. This made me feel very uncomfortable because I was not a best friend. It even prompted a message from an ex-boyfriend who said that he was available if I needed someone to vent to, someone who understands, someone who is ABSOLUTELY available. No, no, no, no,no!

Then I heard from a relative today that a cousin of mine was going to leave her long time husband and three little kids for another man. Sure, why not?? Is it to late to start the year over?

“Acting” my age

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When will I be too old to wear a bikini? Will it be next summer? About a year ago, I gave up wearing liquid foundation. I didn’t like the way it caked in the lines of my face. One good thing about getting older is that I really don’t need it anymore. My complexion is flawless now. Although I never had issues with acne, I did have rosacea. I used medicated cream to tame the redness. I even bought a green base coat to put under my liquid foundation to tame it down. If I didn’t wear foundation, people asked if I got a nasty sunburn on my face. My face isn’t ruddy rudolf reindeer red anymore. 

When will I act my age? Is age only just a number? Are you only as old as you feel? When will I no longer do all of the things that I didn’t get to do when I was young? It seems like my friends don’t go out as often anymore. When they do, they don’t stay out as late. They don’t dance to every song anymore. They look old. Do I look old? Do I look ridiculous pretending to still be young?

I feel like I was never able to be young, to make mistakes. Probably because I never was. I worked hard to earn the love I got. Love was not unconditional. It was earned by being perfect. I didn’t make mistakes because I never lived. I was encouraged not to try something new so I wouldn’t mess up. I had to be perfect or I wasn’t lovable. I had to care for my disabled brother without complaint because I was perfect. I was expected to have perfect grades, but couldn’t live up to it. The women in my family were perfect. My mom was perfect, she was a saint. Aunt Grace was always right, even if she was…gasp…wrong. Grandma was perfect, I could not find one single fault in her. Her love was unconditional. My first born is a perfectionist. She is so easy to love. Love shouldn’t have to be earned, my younger two children remind me of that. They are not always as easy to love. 

I never got to be a child. I was too mature, too shy, too serious, and way too perfect. Is it too late for me to be imperfect? I’m sure it is not. I do have one thing to say. I have absolutely no regrets. None. I just want to grab on to as much youth as I can, experience everything I can before it is too late. Before I have to start “acting” my age. Maybe the desires of youth will eventually fade. Until then, I am not ready to give up the fight. 

Gramps, his later years

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My grandpa’s life interwove with mine for a total of 26 years. I wish I could weave a story that makes the last half as magical as the first half, but I can’t. Right at the midpoint, the summer of my 13th year, my grandpa developed a rare form of polio. One morning while trying to get out of bed, my grandpa fell to the floor. My dad and great uncle tried to lift him without success. An ambulance came to the house and took him to the hospital where he spent the next couple of months learning how to move again. It was a scary place to go as a child. I saw many people struggling to make simple body movements. The scariest was a teen boy who became paralyzed after a deer went through the windshield of his car. 

After a couple of months, my grandpa came home in a wheelchair. He no longer drove. He didn’t walk and he didn’t leave the house. He spent the early years making Christmas ornaments and clocks.  He also carved fish and ducks. His carvings were so life like that people mistook them for a taxidermists work. Then one day, my grandpa became so frustrated that he told my grandma to put all of his carvings in a box and burn them. She didn’t. I think at this time his arthritis was making it painful for him to continue. It bothered him to not be able to do anything anymore. He would sit in his wheelchair and instruct others how to do their work properly. 

To make matters worse, he needed surgery for prostate cancer, lost his vision due to cataracts, and developed diabetes. My grandma never once complained about being his caregiver. He was very demanding. At times, I would sit with him so grandma could get a ride to the grocery store. He was very panicky if she was not back right away. He wanted me to call the police to see if something happened to her. 

After time, most of my grandpa’s friends and family passed away. The only visitors he got were the Jehovah witnesses. They were kind to him and shared fishing stories. I visited at least once a week. Many times I would sit with my grandpa in silence. After I had kids, he loved to visit with them. He would smile, hold their little hands, and cry. He loved visits with my dog too. 

After 13 years of sickness and struggle, my grandpa went to his final home. He was ready. A few years after that, I was waiting to sing my first solo in church. I saw a man who looked exactly like my grandpa sitting in the back. For a few minutes, I imagined that he was still alive right there with me. I miss our time together. 

Scabies and other things that bug me

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My autistic brother Matt has been in a group home for about 5 years now. Begrudgingly, my mother decided that it was better for her to choose a home of her liking versus having us do it after she is gone. It was something that my parents put off doing until Matt was in his mid 30’s and they were their 60’s. It wasn’t an easy adjustment, but it was mainly good. Well, except for the scabies. That’s right, one of the care providers brought scabies to the house. This ended up resulting in my brother getting scabies which he needed 3 pesticide treatments for. He had a major allergic reaction to the treatments which caused his hands to blister, peel, bleed, ooze in a red angry rash. My brother went around looking like he had a flesh eating virus for the past 6 months. The care provider refused to seek treatment and kept spreading it to this group of people again and again until they were forced to let her go. My brother is starting to finally get better. It was something so disgustingly horrible that I find hard to describe without pictures. You wouldn’t want to see them anyway. 

In response to all of this, my mother did some extreme allergy testing. This resulted in some extreme responses while we were up north this last weekend. First of all, the sun revolves around Matt. Remember me saying that last time up north when it was very hot Matt was angry because he couldn’t sleep? He wanted all of the fans off so my mom turned them off. So what? Who cares if he is angry? What, is he going to hurt our children like he hurt us? About the diet, my mom was going to wash off the grill after we made hamburgers just in case there was something in the seasoning that Matt was allergic too. That is too extreme. When he comes to my house he brings his own hand towel because he may be allergic to my detergent. That is too extreme. He also brings his own soap. That is too extreme. Matt is allergic to one kind of sugar and not another, but the canned food label only says sugar. Perhaps we should call the company and ask what kind of sugar they use. That is too extreme. He can no longer have baked beans because he is allergic to the pork now. 

Mark and Carla decided to have a pig roast for their wedding in 2 weeks. Matt now can’t eat what they are serving. My parents asked if they could stay at  Carla’s house for the wedding because of the special diet and linens that needed to be used for Matt.  Carla said that she didn’t have anywhere else to get ready, to put on her dress. Emily passed on a word of advice to Carla that apparently I gave her, to set boundaries. Emily said that my mom asked her to ask what kind of butter was in the mashed potatoes on her wedding day. Emily is right, the bride has too many other things she has to worry about. Mom asked Mark if Matt would be the best man at the wedding. Mark just said that in passing a couple weeks ago because he hates being the center of attention. Tensions are high, no one is ready. 

Recently, my brother Luke and I have been discussing taking our families on vacation this winter. I told Luke that mom might want to bring Matt along. He said absolutely not. I agree. I’m sorry, I can’t live like this anymore. If we decide this week to fly down to Florida, either my brother or I will have to be the bad guy. We love our mother and Matt, but this extreme favoritism just brings resentment from the rest of us. We have our own problems with our own kids. I don’t think that scrubbing down the grill is going to make a difference. I know mom needs to feel like she has some control. 

I am sorry, I feel very angry today. I realize that parenting a forever child is difficult for the parents, but guess what? It is hard for the siblings as well. We spent our whole lives dealing with all of this crap. Just because you are martyrs doesn’t mean that we don’t struggle. I’m sorry to be so edgy, some bad things happened today that I can’t talk about now. I will probably be able to talk more about it tomorrow. 

Modesty, or lack thereof

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Have you ever seen a 350 lb man mowing the lawn in a Speedo? That would be my dad. He was never much for clothes. I suppose we were lucky that he tromped around the house in underwear versus nothing at all. He is the eccentric man who goes out to eat in pajama bottoms. If you come over unannounced, he would answer the door in his underwear. He didn’t care if people were over. Mom had to remind him to close the door when using the bathroom. Nudity really wasn’t a big deal, it was natural. Almost normal growing up. If you could call how I grew up normal in any way. 

My mom was more modest. She had really bad varicose veins and still does after surgery. She said that 30 hours of back labor would do that to you.  I guess I am lucky to have had 3 c-sections. After 30 hours of labor, my brother Matt entered the world with a broken clavicle bone. Talk about intense labor. My mom would always wear pants in summer. If she wore shorts, she would wear nylons under them so no one could see her “ugly” veins. 

When my autistic brother Matt hit puberty, he had some modesty issues as well. He would often stand at the end of the driveway and expose himself to whoever went by. My grandma had 2 little girls that lived next door. Any time they were around he would drop his pants and wiggle his penis at them which elicited lots of giggles. You probably now understand why I do not embarrass easy or why I never had a lot of friends over growing up. Yes, my brother exposed himself to a couple of friends while my dad waltzed around in his underwear. To make matters worse, Matt would traipse around the house in an old bridemaid’s dress of my mothers. After complaining to my mom about this, she said who is he hurting and just let him. 

On the flip side, no one cared what I left the house wearing. Short mini skirt, no problem. Sometimes I have to ask my husband. Is this too short? Is this too low cut? 

Since I also helped with Matt’s care, part of that included showering him. While other college kids were out partying on a Saturday night, I was showering my brother. Did I mention that he refused to wipe himself? He has tactile sensitivity to toilet paper and napkins. He also will not aim himself while peeing, which created a messy bathroom. Mom always told visitors that the condensation from the toilet was causing the leakage. It was a good possibility that if you got up in the middle of the night to use the bathroom that you would step in pee. And that is why I could care less if my husband puts the toilet seat down. That is probably also why when Aunt Grace needed showering and diaper changes when she got old that I showed no hesitation either. What is normal? I am still trying to figure that one out. 

What happened after….

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Almost two years after the birth of Angelique, I had another baby. A little boy that I will call Alex. Alex was an easy baby. He was always content, rarely cried, and followed a very consistent feeding and sleeping schedule. Both babies slept through the night at around 2 months even though I nursed them. I figured I had this parenting thing down pat. Life was going fairly smoothly for awhile. After those first couple of years of peace, life got a little dicey. 

After Matt attacked Angelique on her 4th birthday, life got a little crazy. My mom couldn’t accept that I needed a break from my violent autistic brother for awhile. She pleaded, pressured, and begged to have Matt in our life again. She would drive over a couple of times a month just to have Matt wave at my kids through the car window. She would help out if Matt was included. I couldn’t risk my 2 and 4 year old being hurt by a grown man. I couldn’t. Matt almost exclusively attacked little girls. It wasn’t long after this that I found out I was pregnant and having a baby girl. I didn’t want to tell anyone the sex of the baby, so my mom figured out it was a girl or I would have said something. 

Right around this time, I started babysitting for the neighbor girl about 50 hours a week. She started calling me mom and hanging out with us when I wasn’t babysitting. Every weekend she would stay at her grandma’s while her parents partied. I secretly resented them for having a break. I can’t say that I didn’t feel relief after they eventually divorced and moved away. Also, during this time my husband had started a business on the side. He was working for another company and went down to part-time so he could do this. He eventually used up all of his vacation days and they gave him an ultimatum. Either come back full-time or leave. He left. The stress started piling on again. 

When it came time to schedule my final c-section I opted to do it on a Friday. I had images of watching my other 2 kids while I was in the hospital if it was on a Monday like they suggested. My mom came early Friday morning to watch the kids, thankfully Matt did not get up that early. Arabella was born. Paul went to work. He was a one man show and we had bills to pay. Mom dropped the kids off mid morning as Matt had a dentist appointment. Paul had the kids with him off and on at the hospital all weekend. He had someone from church watch the kids Monday morning to pick us up from the hospital. Then my mother-in-law helped Monday and Tuesday. After that I was on my own, less than a week after major surgery with a 4 year old, 2 year old, and a newborn. A newborn that cried incessantly. That didn’t sleep through the night for a year. 

I felt hurt and angry at my mom for leaving me alone when I needed her the most. Matt always came first. I gave up my childhood for this? In my mom’s defense, she was working full-time and it was her busy time at work. Matt still lived at home and she no longer had my help. Six weeks after Arabella was born, my grandma had open heart surgery and for some reason I was handed the baton of throwing all of the holiday parties. I ended up getting mastitis twice and blamed myself for having a difficult baby because I was very stressed.