A CAREGIVER’S EPIPHANY
I became my mom’s caregiver when I realized my mother could no longer live on her own. She is almost 79 years old and suffers from Alzheimer’s disease. I have to admit that it was something that hadn’t often crossed my mind. I mean, I knew it would happen “SOMEDAY”, but “SOMEDAY” was a day that lurked way off in the distant future. It wasn’t until “SOMEDAY” snuck up and smacked me right across the face that I had to think and I had to do it really fast. So, I moved my mother in for better or for worse.
Like most, I made countless mistakes but I did manage to do a couple of things right. I’ve been her 24/7 caregiver for a year and a half now. The one thing I have learned is that I had been her caregiver for many years before that, I just didn’t realize it. Taking her to the grocery, filling out forms, taking care of her personal business right down to putting those home perms in her hair every 3 months. You see, I didn’t see that as caregiving. I saw it as love. My love for my mom and trying to make her life easier.
When I add those times up I realize that I have been caregiving for roughly 10 years. Taking care of all the little things to keep her from getting agitated. Like the time, she thought she had left her lightbulbs at Walmart only to find them in her freezer. Of course, I even took the blame for it saying that I must have been in a hurry.
You know, as I write this, it finally hits me that she is not only suffering from Alzheimer’s but from her own stereotypes and prejudices about Alzheimer’s. All because she has this problem where she looks at Alzheimer’s as though she is becoming old and dumb and this has been her problem all along. I see now why she tells me that Ronald Reagan had Alzheimer’s almost every single day. In her eyes, he was one of the smartest men she knew. I see why we never really talk about “it” because she gets so upset.
That’s what I love about writing. You can start off heading down a certain trail then all of a sudden a word or a phrase will jump out at you and you find yourself taking a whole other road instead!
Because of where and when she grew up she has always had a certain fear, I’ll use this word for lack of something better, of being seen as dumb or not well-educated. This has made her painfully shy and socially awkward her whole life. So imagine how that fear was amplified when she find out that she now has Alzheimer’s Disease. She certainly didn’t go to Yale or Harvard. She went to college for one year and they taught her about CPR and making curtains, that is the reality of education in most parts of Eastern Kentucky. Not once did I ever look at her as being dumb, but I guess this is what she sees when she looks in the mirror.
This epiphany breaks my heart. This is the woman who taught me to love words, books, and reading, above all else. She would sit with me for hours sounding out the words, teaching me to read before I ever went to school.
This is the same woman who went to school and argued with them that yes, I should be allowed to check books out of the library in the first grade when this was strictly prohibited. She pulled a book off the shelf and handed it to me in front of my teacher and the principal and said one word “READ”. So I read and before we left that day I had my own library pass and I was the only first grader in the whole school who could go to the library during recess and get books. She did this for me.
So my question is how do I convince her that Alzheimer’s Disease has nothing to do with getting old and dumb. That it is a disease, a thief, who sneaks in and robs you of every single thing that you hold near and dear. Who steals those words, books and reading that she so lovingly shared with me? How do I prevent myself from following in her footsteps when I recognize those same tendencies in myself. I guess we are more alike than I ever thought we were.
Appreciate the good, laugh at the crazy, and deal with the rest.
I love you momma!
This post was originally written in March of 2014. It has been revised for today’s post.
Caregiver’s Depression is a huge problem for some caregivers and I will admit that it affects me from time to time.
I read a piece called “Caregiver Depression: A Silent Health Crisis” on the Alzheimer’s Reading Room a while back. In the article it said a conservative estimate was 20% of caregivers suffer from depression, but that 60% show the clinical signs. It went to state that most caregivers never fully recover.
Often times caregivers ignore and sacrifice their own physical and emotional needs because they are trying their hardest to take the best possible care of the person whom they are caring for. The emotional and physical toll that caregiving takes can strain even the most capable person. The result is feelings of anger, anxiety, sadness, isolation and exhaustion and then the feeling of extreme guilt for having these normal feelings.
The follow symptoms are related to depression.
- A change in eating habits.
- A change in sleep patterns.
- Feeling tired all the time.
- A loss of interest in people and/or activities that once made you happy.
- Becoming easily agitated or angry.
- Feeling that nothing you do is good enough.
- Thoughts of suicide.
- Ongoing physical symptoms: headache, digestive disorders and chronic pain.
Respite care relief, positive feedback from others, self pep-talks, and recreational activities are ways to try to avoid depression. Only a doctor can diagnosis depression.
Appreciate the good, laugh at the crazy and deal with the rest.
I love you momma!
Most caregiver’s do not become caregivers on purpose. They only become caregivers after some often traumatic or dangerous situation has occurred with their parents or loved one. With my mother, it was a comment made by her neighbor that first got me thinking about Alzheimer’s Disease. I knew my mom was forgetting things, she had been for several years. I knew that when we moved her from Kentucky to South Carolina her memory had gotten even worse.
My usual day would consist of talking to my mother three different times in a single day. She would call me first thing in the morning and see how my day was going. Then usually around lunch she would think of something else that she needed to tell me. Then about 5pm every night, she would call and repeat the whole conversation word for word. I use to think it was cute, it used to aggravate me to no end. I had no clue what Alzheimer’s really was. I thought that it wasn’t just being forgetful. That’s the easy part.
After her neighbor made the comment that she thought my mother had Alzheimer’s Disease, I began to worry. I knew all my life that when mom got older that I would be the one taking care of her. If I were being honest with myself I had been taking care of her since the day my father died in 1985. Whether it was a form to be filled out or having the skin cancer removed from her arm. It’s always been me.
I always knew that I would have to bring her home with me. My husband and I had talked about this years ago. I would never let her go into a nursing home because honestly I believe that it would kill her. I had this figured out, I knew what I would do. I would move her in with us someday in the future where she would sit around and quilt and play with future great grandchildren with a great big smile on her face. It wasn’t until “someday” snuck up and smacked me across the face that I realized I didn’t have a clue what I was doing.
I made SO many mistakes. Do I regret moving her from her home in KY and bringing her here so far away from the home she had ever known? No, that couldn’t be helped. I knew she wouldn’t be able to survive back in KY without help from me. We found her a beautiful apartment and she lived there for two years. I decided to make a surprise visit. What I found was my mother dirty, unkempt and with little piles of pills laying throughout her apartment where she had set them down and simply forgotten to take them.
I talked it over with my husband, her lease was up and it seemed like the perfect time. We moved her into our small 2 bedroom home, put all of her belongings in storage until we could figure out what to do with all of it. I put her bedroom suite in her room so she would at least that, a little bit of familiarity. Within 2 days we were all miserable. Mom was mean and hateful and would disagree over everything then forget what she was even arguing about. She plummeted quickly. So what did I do, I moved her again. This time I moved all of us. I found a house that was big enough for her stuff and ours and luckily it all came together rather quickly. If you are keeping track that is three moves in two years.
I spent my days saying mom you can’t do that, mom you just did that, no mom. We were still miserable. It all came to a head on January 10th 2014. I had gotten very sick and lost my voice and spent several days in the hospital. It would be months before I would be able to speak again. I was already diagnosed with an autoimmune disease and the added stress was just making everything worse. WhIle I was in the hospital my husband was running back and forth taking care of both of us. At the exact time we were visited by the Polar Vortex and our pipes froze, mom got confused and locked all of our house keys in the safe. It was a nightmare. It ended with a meltdown. This small woman who has never smoked a cigarette, never tasted a beer, never said a cuss word in her life looked at me and said “I hate your house, I don’t want to be here and I’m going home GDit”.
I lost it! I had done all these things bent over backward to make her happy and this was the thanks I got. I looked at her and screamed, “You can’t go home, you can’t take care of yourself you forget everything.” My mother ran from the room crying, I sat at the table crying and my husband quietly slipped out the back door with tears running down his face” What had I done? What kind of monster was I? A little while later my mother walked back in the kitchen. Eyes red and swollen, in the smallest voice I have ever heard said “I’m so scared”. I looked at her and said “Momma, I’m scared too, but we are going to have to do this together”. I decided then and there to find out everything I could about Alzheimer’s and to make her life as happy and safe as I possibly could. This is where I found out that I had done every single thing wrong. This was my 44th birthday.
No, caregivers don’t become caregivers the way you would any other career. They become caregivers because they have to. They become caregivers because they wouldn’t have it any other way.
November is national caregiver month. If you know someone who is a caregiver give them a call, take them lunch or maybe even take over for a couple of hours to give them a break if you’re able. Caregiver’s don’t get enough support. It is stressful, depressing and isolating and the whole reason I began writing, as an outlet for all of these feelings.
Appreciate the good, laugh at crazy, and deal with the rest.
I love you momma!