I’m My Mother’s Daughter - I’m My Mother’s Advocate

It’s a warm Sunday evening, and after dinner, I draw a warm bath. “I don’t want to take a bath,” she says emphatically. “I know how to do this myself! I don’t have to take a bath!” I quickly recall my toddler children, and how they expressed their newfound independence. Oh, how mad they were at me for selecting their clothes for day care or when it was nap time, and they wanted to play. After much coaxing and strategizing to make what appeared to be her decision, she carefully steps her foot into the tub and sits on the chair. I begin to bathe my 73-year-old mother with her help.

My mother has Alzheimer’s disease, and although the last few years have been difficult for her and for the family, this disease has also (at times) saddened, angered and strengthened me. My mother’s disease has taken what we knew as normal in our daily lives to a level of the unknown; similar to an out-of-control roller coaster ride with bouts of calmness, to suddenly a twist back into the vortex. My mother used to be such a strong independent person and is now only a shell of what she used to be. In spite of this terrible disease, Alzheimer’s has blessed my family and me in many ways.

I’ve learned strength and perseverance from my mother. Married almost 21 years to my father until he passed away from cancer, my mother took over the family business and she became both my mother and father. Our relationship hadn’t always been smooth (especially as a teenager). I know now that my mother raised me the best way she knew how; however, there were times when I felt I wouldn’t or couldn’t ever measure up to her standards. My maternal grandmother on the other hand loved me unconditionally and encouraged me with stories of endless possibilities. When she died, I felt lost. What was I going to do?

My husband, children and I moved to Minnesota where my husband was raised in 1995 and within 17 days, not only did I carry a full-time job, but I managed to have a garage sale, pack up and move! I grew up in a wonderful suburb of Los Angeles and now living in a town of 4,000 people, I experienced culture shock. On top of the culture shock, there was snow! However, I decided that in order for me to cope, I promised myself to keep an open mind and I began to see the beauty and great things that living in Minnesota had to offer. I eventually grew to love this rural town. It didn’t hurt that my husband’s family lived here and I had their support, too.

Raising children overall was rewarding; yet sprinkled with moments of really difficult times. I could have used my mom’s support over the years. I tried so hard to convince her to move here. “Never, never, never!” she’d say. At first, we would try to visit her every few years, but financially, it was easier for her to fly out and see us once or twice a year. We cherished those times when she arrived. We would play games, go shopping, visit various destinations; I truly realized that she was the missing piece of the puzzle in my family!

However, things started to change, and it wasn’t the weather. I didn’t suspect anything at first. The occasional, “Where did I put my glasses” or “You didn’t tell me that,” is something that happens to all of us at one time or another; especially during times of stress. On a visit to Minnesota in 2008, my mom fell into our flower bed while my son, Jeffrey scooped her up and wiped the dirt and mulch from her pants. It was probably one of the first times that I realized that my mother had aged since last year and it was heartbreaking to see my mom like this because she wasn’t as strong and independent as I used to think.

My mother also had some behavioral changes, along with the physical changes. She was a slow walker but this time she took little gaited baby steps. Alarmed, I began to ask the many questions that a concerned adult daughter would have for her parents and I received dirty looks mixed with a lot of resistance. “I am just fine. No, I don’t need to see a doctor. Yes, I am eating, and just leave me alone!”

She returned to California and my anxiety eased up a little bit (I’m sure hers did, too). I went from thinking she would be okay to something is wrong. My husband thought I was overly concerned for her health. I began to keep a journal and wrote a few notes to determine if there was a valid concern for my mother or if it was me. I contacted her best friend and my uncle who lived close by to see if they noticed any changes. I contacted her doctor at the time, explained my concerns and asked for the conversation to be confidential. They didn’t. I was in BIG trouble. Note to daughters: You are never too old to be reprimanded by your mother. Shortly thereafter, she chose another primary care physician who she really liked and he cared about her well-being.

Clue #1: Your intuition is correct. If you feel like your gut is telling you something, it probably is correct.

I began to notice signs of withdrawal from her friends. Over the next few years, there were a couple of phone calls from a few concerned friends. Naomi had known my mother forever. They were once very close, and they used to spend their weekends going to lunch, then to the nursery for gardening supplies, or shopping. However, mom was withdrawing herself from Naomi. Mom would get very upset over the littlest things. My mother sounded fine over the phone, but because I spoke to her daily, certain things didn’t seem to add up. My mother’s conversations with me were like nailing jell-o to a tree. When asked how her day was, she said she had a doctor’s appointment scheduled for the end of the week. When the end of the week came and I asked her about her appointment, she’d stall and then say it wasn’t for that day, it was for the following week, or she already had it two weeks before. Clue #2: Nailing jell-o to a tree and withdrawing from friends/family: My mother withdrew from people who might “catch on” to her illness. This was her protection mechanism.

Keep your eyes open for repetitive answers. When I asked her if she was eating, she’d instantly reply with the same response from the day before, “One piece of salmon, a baked potato and vegetable.” I look back and I realize that she said what I wanted to hear but she also said what she could remember. Sometimes she would get frustrated and abruptly hang up on me. My mother was still fiercely independent, and after several hospital stays a social worker suggested a home care nurse who could check in on her periodically. Mom agreed (this way she could leave the hospital) and the poor nurse was fired during her first visit. I was on the phone with my mother while she screamed at the nurse from the home care agency. Poor nurse. Clue #3: Are they repeating what they eat over and over again?

Look for signs that things are not the same anymore. Things took a turn for the worse in July 2012, and my mother became very ill and was hospitalized. Calling her several times a day, I pleaded with her to live in Minnesota. By writing in my journal, I found patterns of predictability and I could tell just by listening to her voice or the things she said (or didn’t say) that for certain would cause her to be hospitalized again. I contacted her neighbor several times who stopped by to check up on her, and they thought she was doing okay. I look back now and realize that she often hid her disease (which at this time was still undiagnosed) from many people. I contacted her doctor’s office who tried calling my mother to come to the office for blood work, but she never arrived. They couldn’t do more because I wasn’t on the release of information. Clue #4: No-shows for appointments. If she isn’t showing up for appointments, or answering her telephone, something may be wrong.

It is important to remember to enjoy the good things and the many funny moments even during the most stressful times. Mom was in the hospital for 3 or 4 days and upon discharge, she stayed in a rehab facility where she would be for three weeks. One day, I received a call from the rehab facility asking if I knew where my mother was (how could they lose her?). While on the phone with the rehab facility, mom called my cell phone to tell me that she was out to lunch with her friend! She didn’t remember that she needed to check out. But she could remember my phone number. Our brains are so mysterious. Clue #5: Remember the good times and funny moments. You will treasure them.

One evening in October 2012, Mom had another incident which nearly caused her to almost lose her life. A couple, who were walking their dog late at night, found her sitting on the sidewalk, in a delirious state of mind. Going door-to-door, they found my mother’s neighbor who drove mom to the hospital. My friend, Sandy picked me up at the airport in L.A. and drove me to the hospital. They gave mom IV fluids for dehydration, but somehow when they inserted an NG (nasogastric) tube, they perforated her stomach causing sepsis. They told me and my family that they didn’t think she would make it through the night. Many family members visited her and prayed for her recovery. She couldn’t talk she just lay in the bed. I spoke to her, kissed her forehead and asked if she heard me at all to let give me a sign, letting me know. Her index finger tapped me ever-so-lightly. She had emergency surgery where they repaired her stomach (that is a separate story in its own), and then she recuperated in intensive care for 3 weeks and eventually rehab for 3 ½ months. This was the final straw; mom could no longer live alone. Clue #6: Get a Power of Attorney before emergencies happen (if possible) – it is needed to help your loved one with making medical decisions when they are not always capable of making them on their own.

My friend dropped me off to my mother’s house where I began to look around. I found it to be a little messy with the bedroom having the biggest mess. She had failed to make it to the bathroom and the bed was soiled. She had dishes that needed to be washed and furniture that needed to be dusted. I cried. I knew that if my mother was in her right mind, she would have this place spotless. I learned all of my house-cleaning duties from my mother. I stripped the bed, cleaned the sheets and went to sleep. I prayed that if she makes it through the night I would take care of her, and I’ve kept my promise.

I instantly recall how I had written in my journal about how mom would more likely end up in the hospital again. Looking back, I believe my mother and I were both in denial of her illness to some extent. Friends and family didn’t see her often and she was able to show them one side of her. Toward the last 6 months, I ordered groceries online for delivery. I contacted her pharmacy to prepay and deliver her medication refills. My days, nights and weekends were consumed with thoughts of my mother. I really wanted to believe her when she said she was fine and doing well on her own. Especially when people saw her the night before and then reported back to me, that she was okay.

She has lived with us for almost 3 years (there were a few times she lived on her own for a few months at a time but it didn’t work out). Knowing she is here with me has helped put my mind at ease. I help her with her bathing, and with other personal cares. My husband, and daughter are very supportive with my mom living with us, and they help out as much as they can. I work full time and I couldn’t do this myself. It hasn’t been easy, her mind thinks she can do things and although her short-term memory is limited, she still has her long-term memory. She is like a teenager and toddler rolled up in one. “Yuck, I don’t like that” as she looks at what I’ve made for her to eat. “Can’t we go to McDonald’s? Clue #7: Select your battles. You will not win.

At times, I still cannot wrap my mind around the fact that my mother is unable to remember things. How she can easily forget what she ate 10 minutes earlier, or how confused she gets with movies or when people talk, how she needs assistance with bathing, but wants to buy an SUV to drive her great grandchildren around. Clue #8: Be creative with your answers. No, she will not be getting a car, but we might go look for one in a few weeks. ☺ I find new ways of speaking to her so that she doesn’t become defensive or mean. She tells me she hates me, and I kiss her on the forehead and she smiles. I find things that make her happy. “Will you bring me a surprise?” she asks me when I go to the store. Clue #9: Do things that make her happy and they will make you happy. Live in their world and you and your mom will be so much happier. There is no point to convince them of things. They are unable to understand. Their neurotransmitters and plaques and tangles are preventing her from understanding.

You see, I don’t have my original mom, but I have this person who gave me life, and she needs me; even if she thinks she doesn’t. I don’t know what the next year, or 6 months or tomorrow will bring. She will eventually need 24/7 care that I won’t be able to give her. There are resources to help you; there are websites with invaluable information, out there (contact your local Human Services Department). I work with nurses and a wonderful doctor in home care and hospice who have been very supportive with my many questions. I attend support groups (when I can remember…). However, for this next journey in her life, and mine, we’ve managed to come up with a new normal. Yes, I mourn for what used to be, I feel angry but actually mostly sad inside at this awful disease, but I feel blessed because we’ve bonded in a way and we are closer than ever before. Clue #10: Try to do things to help yourself, the caregiver. Take care of yourself and do things that make you happy. I attend an Alzheimer’s Support group and I enjoy it. I am with others who share similar experiences and tools to help get through the day.

2016: It’s been a year since I last wrote this and my mother still lives with me. She is 74 years old and now still feisty, but some of this has diminished and replaced with more fear and anxiety.

She desperately wants her independence on one hand, but doesn’t attempt to gain it back. This disease is baffling to me.

Instead, she watches her favorite programs on T.V. with Curious George now being one of them. She makes excuses for the T.V. remote as she fumbles at changing the channels. She reminds me to feed our pet, but is unable to tell me that she has to go to the bathroom.

2017: Since this was written, she is now at a wonderful Care Center, and doing well. But there was an adjustment period. She is just as feisty there as she was at home with me. So far, in the two months she has been there, she has managed to lose two roommates, and she is sassy with staff. She wasn’t walking anymore and she was incontinent. She needed a Hoyer lift. Clue #11: If your parent goes to the care center, there may be an adjustment period as they are confused and losing their independence. It might appear that they don’t like you. Remember, it’s the situation, not you. This isn’t always an easy transition.

I love our daily visits and polishing her finger and toenails. She looks around and asks where she is and I say she is in her apartment. She asks where the kitchen is located. I say that it’s not attached to her “apartment” because she doesn’t have to do dishes anymore and she accepts this answer 😊

2018: My mother has been losing weight and she thought she could walk. She tried getting out of bed and walk without remembering that she doesn’t know how to anymore. She fractured her hip in two areas. She eventually passed away of aspiration pneumonia on December 4, 2018. She meant everything to me, and it was reflected in her Celebration of Life. She was like sweet and sour chicken. Or as one staff member says, “she was like a Sour Patch Kid; sweet and sour, but loveable.” Yes, this is my mom, is to a tee and I loved her so much.