Just Starting Out

LilMagill

Just Starting Out

LilMagill
(Editor's Note: We welcome LilMagill, who cares for her mom, to our blogging team. Feel free to connect with her on her profile page: @lilmagill.)

street-368719_640When I was four, my parents bought a new house in the suburbs with four bedrooms. My parents got one, I got one, and my grandmother (Dad's Mom) got two: a bed room and a sitting room. My mom didn't work outside the home, so her days were spent caring for her young child and elderly mother-in-law. My grandmother never had dementia, but she had several small strokes that left her pretty feeble. She walked with a walker and spent most of her time in her sitting room, watching her stories on TV or reading Harlequin romances. She still got together with her Sunday school group of many years for monthly lunches, and she sometimes attended a Happy Agers club. In one class, they learned how to paint a sunset over the sea with a sand dune and oat grass in the foreground. We put up the painting on the living room wall. She was a doting grandmother. Her only daughter (she had three sons) died at the age of two, and when I, her only female grandchild, was born, I was all that much more special to her for being a girl.

She lived with my family at least ten years before she went into a nursing home. She had begun falling a lot, especially on her nightly trips to the bathroom. She began to have trouble with incontinence. She became very anxious and wanted my mother in her sight all the time. If my mother left the room, my grandmother would begin shouting her name. It became hard for my mother to leave the house and for my family to take a vacation. Hired help refused to come back because my grandmother, who was so gentle-tempered with us, would treat them horribly. My father and his brothers had a meeting to talk about their mother's care, and they arrived at a decision: Mom could put her in a nursing home if she wanted to! I remember my mother crying in frustration and walking out of the house to get away from everything. I was a teenager by that time, completely self-centered and unaware of how difficult caregiving had become for her, and I was frightened by how upset she was.

I remember when my grandmother was informed. I think it was like this: we were going to take a vacation, the three of us, and Grandmom was going to stay in a nursing home just for a few weeks, to try it out. I remember her standing up, clutching her walker, saying, "I never thought the day would come that my own children would put me in a home." And she was yelling or crying or both, I only remember the level of emotion. We all cried, and we were sorry. But the move was made, and we all adjusted. My mom remained my grandmother's primary caregiver, visiting several times a week and conferring with the staff, advocating for my grandmother's needs. Once, near the end of my grandmother's life, my mom visited and found her chewing on something. Her mouth was so full she couldn't talk, but she couldn't spit it out. Lunch had ended long ago. My mother called in an aid and insisted that she get the food out of my grandmother's mouth before she choked. Mom has told me that story many times, how angry she had to get in order to make the aid help.

My grandmother died at age 96. I was in another state for graduate school, close to exams, and I couldn't make it home for the funeral.

When my father passed away in 1998, I urged my mother to move to Athens. A couple of years later, she did - she bought a small house in the neighborhood where my husband and I were living in our own small house. In 2003, I unexpectedly (but happily!) got pregnant. I remember running down the street early in the morning so I could tell my mom right away. I never gave her better news! She cried tears of joy. She helped me through every phase of pregnancy and was in the hospital with us when my son was born. She was his first and only babysitter, keeping him all day once I started back to work. They've been together almost every day of his life since. She has said many times that after losing my dad and all that grief, her grandson gave her life again.

In 2005, my husband and I wanted to move into a bigger house to accommodate the third person we added to our family. We talked with my mom and decided that she would also put her house on the market and we would go in on a house that we could live in together. We found our current place that has a finished basement with a patio entrance. She has two small bedrooms, a living room, and a kitchen/dining area. She and my son are so close--he spends as much time downstairs with her as upstairs.

In 2011, I started noticing that she wasn't remembering things very well--mainly things I would tell her in conversation. I started googling Alzheimer's and made myself crazy with fear. She does not yet have a diagnosis of dementia, but it's pretty clear to me that she has some cognitive impairment. I haven't noticed personality changes, and she hasn't gotten lost in Kroger, but it is getting harder and harder for her to keep track of the things that happen or the things we have planned. She's beginning to have trouble reading and having to re-read chapters whenever she picks up her book. I read about the Draw A Clock test online and asked her to do it. It wasn't a crazy clock with the numbers in a straight line or outside the circle, but the numbers didn't quite fit the quadrants, and the clock was very small and poorly shaped. I had told my son about the test (he is 10), so another day, after she said, "I don't know what's wrong with my brain sometimes!" he asked her to draw a clock. She began with the 12 at the top, but then wrote the numbers in the wrong direction. My heart sank. That expression is so descriptive of the feeling. I pointed out what she had done wrong, so she redid the clock correctly and drew the correct time, but my heart did not recover.

Until a month ago, Mom was living pretty independently, and she was picking up my son from school every day until summer vacation began. A month ago, she had a fall on pavement and hit her knee. Miraculously, nothing was broken or torn, but she had a massive bruise. For about two weeks, she needed intensive caregiving from me. I got some help from Home Instead on the two days I had to go to work, but otherwise, spent almost all my time attending to her needs--getting up in the morning, coffee and breakfast, medication, getting dressed--you all know what I mean.

At this point, she is still in pain but able to get around and do things for herself. The level of care I'm providing has subsided, but not to the level where we were before. Her cognitive function seemed to take a hit, and she's needing a lot more reminders about meds, meals, brushing her teeth, what's going to happen when. But we can still have conversations and she still remembers a great deal of her experiences. It's not all gone. Some friends came over for lunch the other day, and I asked how she seemed, cognitively, and they said, "Fine, normal - at least as much as we are!" (They're in their 60s.)

Regardless, I feel like we are at the beginning of a long and difficult road, and I am SO scared. These are my main fears:

  • Dementia will change my mother into another person, someone who will be hard to love or who will not love me.

  • I will make the wrong decisions about her care. One of the biggest decisions I'm facing is whether or not she should drive again - she hasn't since the accident.

  • I will lose my own happiness and resent the sacrifice too much.

  • I won't be able to be a good wife, a good mother, a good friend, a good teacher AND a good daughter/caregiver, and I don't want to give up any of those roles.


Well, writing that was somewhat therapeutic. Thank you to anyone who took the time to read all those words.

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Tracey Martin

I am just starting to navigate my way around other blogs. Thank you so much for writing this. I appreciate the honesty as you list your fears There is a shared experience in caregiving and learning from others. I look forward to reading your other posts.\r\n A few friends of mine have told me that my daughter is learning how to be a wonderful caregiver by watching me. She offers me wonderful support. Last week, she called and said she was stopping by because \"she\" needed a hug. I know she knows I needed it more than she did. \r\nIn the first week of blogging, I discovered that my original intention was to blow off steam related to siblings not sharing the work to care for Mom. However, my next posts were really more about the journey that Mom and I are on. You are a beautiful writer.\r\n.

Dawn

Lil:\r\n\r\nI can completely relate to your fears. My mom is still in rehab, waiting to come home, and I struggle with all of those every day. I just wanted you to know that you're not alone (and neither am I!). Thanks so much for sharing. \r\n\r\nDawn.

Denise

Hi LM--I just love this post. Thank you so much for sharing your story with us. I'm looking forward to reading more.\r\n\r\nI think the struggle when you face something that you know will change in your life is understanding how to plan for the future but live in the moment. Elizabeth Lombardo, author of \"A Happy You, Your Ultimate Prescription for Happiness\" used to join me one my podcast. She would regularly remind us:\r\n\r\n\"Don't put your winter coat on during the summer.\"\r\n\r\nAll your worries could happen. Or, not. Right now, though, they are not part of your reality. Focus on what's going on today. Plan the best you can for tomorrow--read about the disease process, learn which community resources can help, get a doctor for your mom that you both like, spend time every day on what activities and relationships that you love. \r\n\r\nSeveral years ago, I gave a presentation of The Caregiving Years, Six Stages to a Meaningful Journey to a small group over two Saturdays. One attendee--Clarence, a retired pastor--sat in the front row, a wonderful participant and listener. Whenever he shared about his caring for his wife, he always began with this sentence: \"We don't know that she has dementia and I don't know what good a diagnosis will do.\"\r\n\r\nFinally, on the second Saturday, I realized what Clarence worried about: Would the disease process change the love? So, I told him: You'll always love your wife. And, she'll always love you. Maybe she will express her love to you in a different way. The love never dies.\r\n\r\nI truly believe this. A diagnosis of dementia will change so much in your world. Perhaps the diagnosis will challenge your love on some days. But, it doesn't take it away. Love is such a natural. innate human condition. \r\n\r\nYou are doing so well. It's such a scary time and you are facing your fears with such courage. Difficult days may come. That's okay because you will be okay.

Donna Bates

Thank you for sharing. You have generations of excellent examples of caregiving. Simply show the love that was extended to you and the rest will fall into place, one day at a time.\nMy husband and his brother had an intervention 2 years ago with their mom to get her keys. She was mad. She didn't speak to them for 3 days but on the 4th seemed to be over it. They both breathed a sigh of relief until the neighbor called and said they saw her in town. Evidently, on that 4th day, she found her spare set. :) Dementia means some brain cells are misfiring but never forget, NOT all of them are. Find the humor where you can and thank you for loving your elders as they loved you.