Most Critical Mistakes I Made as a Caregiver

Caregiving is usually full of lessons to learn the hard way. Each and every caregiver I know can share their own stories of what they learned. I will share a few today from my own experience.

Communication is vital even when others do not understand or agree. I should have talked to my mom about her concerns and fears early on. My heart and emotions were reeling and I was afraid to. She had always been responsible and hid her own emotions well. This made it hard to know how she was processing information. Knowing how important it is to show empathy, I should have taken her hand and acknowleged that I was scared and sad too. Even if she did not vocalize her feelings, I could have let her know I was with her and understood.

I would have tried harder to help my dad understand how his own behavior would have to change. When you care for someone with Alzheimer’s disease what works one day may not work the next. We cannot argue and try to reason with them. Their reality and ours may be very different, but we have to move into theirs to be effective.

I would understand the behavior changes due to pain and fight placing her in a geri-psych unit without treating the pain first. We had a terrible experience when we placed mom in a memory care unit. They called about four days later and told me she was out of control and I had to take her to the hospital. She was angry anad aggressive which was totally not the person I knew.

It was late in the evening and the nurse was waiting on us. They took her straight into the emergency exam room. I called for someone to come and take dad home. When I came back into the room, they were testing for a uti infection. It was positive. The nurse lifted my mom’s top and saw red. I watched in horror as they removed her bra and she cried in pain. A nasty yeast infection was under her breast. The nurse saw my shock and asked where mom had been living. I told her and saw her spring into action to calm mom and immediately bring a physician in. I would not want to have been the person from the facility that answered the call when I heard his reprimanding.

I allowed mom to be admitted into the geri-psych unit because that is what they suggested. Today, I would have asked for a regular room for a couple of days to treat the uti and yeast infection. I would have stayed with her 24/7 and evaluated the anger and aggression. Then agreed to the other if behavior was still an issue. This was a hard lesson learned!

These units are necessary. The medications used do not always work. They try one and then another. This process sped the loss of skills and my mom never regained them. She had walked in and was talking well. We came out in a wheelchair and speaking fewer words. I knew she was overmedicated and began talking to her physician. He and I together decided to move mom to a skilled care facility where their medical director could ease her off of some of the meds.

These lessons are shared not to scare you, but to help you understand it is not easy to always know what to do. My mom would have lost those skills anyway as the disease progressed.

Caregiver stress is real. My dad was showing signs of poor judgment and decision making as mom’s disease progressed. I should have monitored finances earlier than I did. Someone not in the family had been talking dad out of quite a bit of money. He had always been a generous and kind man, so she took advantage of that. It was elder abuse. My brother and I confronted dad with the bank records and ended the situation thankfully.

We actually dealt with one parent with Alzheimer’s disease, one with mini strokes, one with cancer and another with what we thought was vascular dementia. When my mother-in-law was diagnosed with vascular dementia, I accepted that. As time passed it, I questioned the diagnosis and her physician had moved. Strange and stranger behaviors were happening. There were days that she came across as her normal self and others full of delusions and hallucinations. After her death, I found that one of the most unusual behaviors had a name, Capgas syndrone.

It is a rare psychological condition where an individual believes that a loved one has been replaced by an identical imposter. She would tell us her husband had been there. If someone reminded her that he was deceased, she would say “you know what I mean, it was the other him”. One day during a visit, she insisted that we were not the real us. We looked, sounded and acted like the real us but we were not the real us.

All the the above led me to believe that she actucally had Lewy Bodies which is often misdiagnosed. I would have tried harder to find her true diagnosis. It would not have changed how we cared for her, but it would have helped other family members understand what she was facing and helped them accept what we were dealing with.

My mistakes allowed me to learn to observe more, be patient, be diligent and remain humble. Trusting God to strength me and give me wisdom and grace got me through.

Word for Today

Philippians 2:14-16 (New International Version

Do everything without grumbling or arguing, so that you may become blameless and pure, “children of God without fault in a warped and crooked generation.” Then you will shine among them like stars in the sky as you hold firmly to the word of life. And then I will be able to boast on the day of Christ that I did not run or labor in vain.

Song for Today

Prayer for Today

Dear Heavenly Father,

Thank you for your amazing love and grace. You are where I run when I feel regret over my mistakes. You hold me in your arms and comfort me when I walk in pain. You pick me up and steady me to keep going.

Amen

It has been 10 years

Today I dedicate this post to my beautiful mom.

Dear Momma,

If you could see my heart, you would see little stitches sewn by God as he heals the gaping hole you left when you passed ten years ago. Every ounce of me wanted to take the horrible disease called Alzheimer’s from you. I coudn’t, so I decided to learn everything I could about how to help you and make you feel loved and cared for.

Little things remind me of you all the time. When I received red roses for my anniversary this month, I remembered how much you enjoyed them when Dad bought them for you. When I savor grapes, I remember how much you loved them. Wearing pieces of your jewelry makes me feel joy. An unfinished jigsaw puzzle sits on my dining room table. Actually, it is your dining room table we used to sit at together.

Don’t feel bad about me taking care of you. Those years are treasures for me. I saw little glimpses of all that you are. The inhibitions disappeared and I saw a fun woman giggling and humming. It was a side of you that you had hidden away to be a responsible and mature adult.

I watched a woman who was secretly called the sugar police by her sisters devour cookies, ice cream and desserts. It felt freeing to see you were more normal than we had thought.

I learned to love my family deeply from you. I learned to make sacrifices for others from you. I learned to clean from you, but it didn’t make me a total neat freak like you were.

You took phone calls at home from confused older customers at the bank. You gave children a ride to church. You rocked babies in the church nursery. You shared food from your garden. You would go to the nursing home to feed my grandfather when he wouldn’t eat for anyone else. You drove through the night to be there for my toddler while I was in the hospital with her baby brother. You even picked cotton by hand to buy fabric for my new clothes when I started to school. The wonderful memories of you are flooding over me now.

Your family has grown a bit since you were here. With my brother having six children, we have had a few weddings and a few more babies. Liz wore your ring at her wedding. She asked for a photo of you and dad to display. I chose a photo without noticing that you had that very ring on. We both teared up when we realized it. You have two amazing great-grandsons now. What a reunion we will have one day!

It was an incredible honor to walk on one side and have dad on the other as we walked you toward your final home. You and dad made me a better person. I love you so deeply and am looking forward to joining you in heaven when my life here is over. Give dad a hug and ask him to give you one for me.

Love,

Your daughter

My letter was how I chose to journal today. Journaling is one of the many ways I learned to cope. Realizing that being in the moment with my mom where she was in her mind at the time made taking care of her much easier. The years spent taking care of her long distance and in her home were difficult. Many lessons were learned about God’s incredible grace and strength. Moving mom to skilled care was heartwrenching, but dad visited daily and I did once she moved closer to me during her final days.

I cannot count the tears that rolling down my cheeks as a caregiver. I shed tears writing this post. Comfort was always found in knowing that God saw those tears. When Jesus came to his friend Lazarus’s tomb, he wept. If Jesus wept, then it is perfectly fine for us to weep as well.

You will find your own ways to cope. You will grow and stretch. In the end, you will be stronger than you ever thought possible. Keep giving it your best my friends!

Word for Today

honor your father and mother, and love your neighbor as yourself.

Matthew 19:19

Song for Today

Prayer for Today

Dear God,

I praise you for the time I had on earth with my wonderful mom. Thank you for walking with me each step of the way. You held me when I was broken. You comforted me when I was scared. You gave me strength to do things I never knew I was capable of doing.

I ask today that you do the same for anyone reading this. Pour unexpected blessings into their life. Send friends to share the load they carry. Give them peace at night to rest.

Amen

Humorous Moments Lighten the Load

Sometimes stress can get really heavy when you are a caregiver!

We can learn to see the humor in things. You never laugh at a person. You laugh with them or at a later time with friends or family who understand the difficulties you face.

When you are awakened in the middle of the night and asked “What are you doing?”. It doesn’t seem funny. Your fuzziness clears as your dad wants to know if you had decided to take a nap too. He is very cheerful and explains that he took a nap, showered and was headed to the dining room for dinner. I told him to go open his blinds and look outside. He replied,”oh my it is so dark”. I then told him his clock might say 3:30, but it is actually in the morning, not the afternoon. I then told him to go back to sleep for a bit. He informed me that he was wide awake.

I hung up the phone and called the nurse station at his assisted living facility and requested sometime pay dad a visit and encourage him to try to go back to sleep. I then complained to my husband and tried to go back to sleep myself. After a few more hours of sleep I could smile about the whole thing.

My dad had become urniary incontinent. He had always been a sharp dresser and cared about how he looked. I struggled with how to handle this situation while allowing him to keep his dignity. One Sunday he went to the bathroom and returned to the service. He was wet and he smelled. I tried my best to get him to the car, but dad was very talkative and an extreme people person. I know that smelled him.

My husband asked to handle the situation. He took my dad aside and commented that dad had always looked nice. He mentioned that perhaps dad didn’t make it to the restroom fast enough sometimes. He suggested that if dad would wear depends he might be able to hide this from everyone. People would not know and dad might not smell of urine. Dad agreed. They bought depends.

The next week I got a call that surprised me. All of my apprehesion about talking to dad was for naught. Dad had walked into my aunt’s home and proudly announced that he was wearing depends and they were wonderful. A sigh of relief crossed my face. After hanging up the phone I had a good laugh.

The next story actually involves a phone call. I got a call. The id let me know it was from my dad’s phone. He immediately let me know that his phone was not working. I asked him whose phone he called me from. He told me it was his phone. I asked what the problem was only to be told “I told you my phone is not working”. I realized this conversation reminded me of the following:

Costello: What’s the guy’s name on first base?
Abbott: No. What is on second.
Costello: I’m not asking you who’s on second.
Abbott: Who’s on first.
Costello: I don’t know.
Abbott: He’s on third, we’re not talking about him.

I laughed to myself and assured dad that I would come over right after lunch to check his phone. He was happy and so was I.

How do you not act surprised when a woman would get mad at her husband and throw a glasse of water at him? A friend discovered her dad had used her yeti cup to relieve himself while waiting for her in the car. What do you do when you find your clothes folded and placed in the kitchen pantry? You laugh or you cry. Choosing laughter is better.

Sometimes you cause others to laugh as they watch you deal with behaviors. Sometimes you laugh watching them deal with behaviors. I remember sitting in a hospital room with someone who ate an entire bowl of chocolate ice cream with the nurse handing them pills to swallow between bites. Satisfied that the medication was administered, the nurse turned her back. I watched as the woman promptly spit all six tablets out. After realizing she had mastered the art of cheeking pills, I then wondered how many times she had done this. My humorous thoughts about her talent dissapated as the horror of how much missing her medications had excellerated her behavior problems, falls and mental decline.

Remember it is okay to laugh as long as the person you are caring for is laughing with you. When my no nonsense mom peeked until the table giggling and waving at me I had to laugh. Her frostie had been dropped and I had climbed under the table in front of everyone to recover it. Just as I started to climb out quietly, she began to act like one of my young grandchildren. So much for sneaking out quietly and hoping no one had seen me. Hopefully, some one dealing with a parent with dementia learned humor is a great coping skill that day.

When you are out in public and your parent’s pants fall to their ankles, simply smile and pull them up. When someone with dementia reachs over and takes your ice cream, let them have it. Laugh at the calories you just skipped.

Humor is in fact a tremendously helpful coping skill. If you find something funny, don’t feel guilty.

I mean no offense to anyone but maybe God laughed as he created a platypus, an ostrich or a giraffe. As our creator, he has given us creativity. Use it to make life easier when you can.

Word for Today

Proverbs 17:22

A cheerful heart is good medicine, but a crushed spirit dries up the bones.

Song for Today

Prayer for Today

Dear God,

Thank you for giving me creative ideas as I navigate caregiving. Help me to choose to laugh and enjoy life when I can. Guide me as to when laughter is appropriate and when I need to be sensitive.

Amen

When the Dam Breaks

Today you will learn a bit more about me and my caregiving journey. The photo above is of a dam near my home. There is a history about it that I am sharing to help you better understand my own story.

According to my research over 50 men died during the construction of the dam. A local business has photos taken during the construction and stories I heard from family were that a few of the men fell and were buried in concrete.

The Wilson Dam was constructed in between 1918 and 1924. The shoals on the Tennessee river were difficult to navigate; hence,the dam was an attempt to tame the river. Today it produces power for the Tennessee valley. Families travel over the dam, power their homes and enjoy water activites without knowing the price some men paid.

I realized one day that I too had built a dam to try to control the turbulent emotions that being a caregiver had produced in me. To be strong, I buried pain and grief so that I could be an effective and loving caregiver. My mom had Alzheimer’s. It hurt me to the core watching her fade away. I was hurting so badly that I didn’t even realize that my dad was losing some cognitive ground as well. There was not enough time to process the changes. I shoved the fear, anxiety and heartache aside on the days that I didn’t take time to lay it at God’s feet.

When my mom died, I was not overcome with debilating grief. Dad needed me and I thought that the gradual grief that occurred as I lost bits and pieces of my mom must have left few tears to shed. Then my dad passed and I felt grief, but it still seemed like a wave of extreme grief would hit but it didn’t immediately.

Time passed and tsunami waves did begin to wash over me. Life isn’t always easy, so I shook the water off until other situations in life rattled me. I thought I was doing better and that I had given things to God.

One day out of the blue, a trigger hit. The patches I had applied to the dam could only last so long. When the dam broke, I broke. All of the stuffed emotions rolled over me. As I gasped for air, God used my husband to hold me and just let me cry.

Have any of you been building a dam to hold back your river of emotions? Many of you are dealing with unforgiveness over things in your past. Some of you have regrets that you didn’t choose to lay some things aside and make visiting your loved one a priority. Perhaps you live in fear of getting a terminal illness yourself. Do words run through your head that you wished you had said?

If your loved one is still alive, go and take care of things hidden in your dam. If you feel the stress and see fractures in your dam, find a place to hide and let emotions go. God is a great listener. A friend of mine felt like a pressure cooker and felt she had no place to let off stem. She visited the ocean and slipped out for an early morning walk on the beach. With no one in sight, she faced the ocean and yelled. The ocean sounds covered her voice, but she walked in peace.

Burying your emotions is only a very temporary solution. I understand that you have to be strong until a crisis is over. I encourage you to monitor your emotions. You will reach a point of needing to let steam off. Find a friend you trust and talk it out. Do not be guilty of allowing your spiritual, physical and mental health to suffer. I ignored a health issue for way too long, almost too long. Unusual circumstances happened in the year that my mom passed away. I had to slow down long enough to address a health issue. A surgery and biopsy revealed cancer cells that were caught just in time.

Grief can ease as we replace it with thankfulness for having a person in our lives that we were so blessed to have known. God has healed my heart in a way that no person could. I still miss my parents intensely.

Word for Today

The Lord thy God in the midst of thee is mighty; he will save, he will rejoice over thee with joy; he will rest in his love, he will joy over thee with singing. Zephaniah 17:3

Song for Today

Prayer for Today

Dear Heavenly Father,

I praise you that you are a refuge I can run to when I feel the weight of the world on my shoulders. You are faithful to bear the load I carry. There are days when I understand the outpouring of psalms that David wrote. They are often extreme words of thanksgiving or sobs of a broken heart. You hear my words that flow from me.

Heal and restore me so that I can continue on. Touch my tired body. Renew my confused mind. Give me hope as I face trials. When I am guilty of hiding my emotions, you are searching my heart and waiting for me to simply pour it out to you.

Thank you for loving me.

Amen