The story with my mother-in-law, who I like to call “Mom,” started about eight years ago. Mom had always been a very loving and caring individual. She always smiled and wanted to keep her family together. She always had holiday parties at her home to bring the family together. Mom was just like a second mother to me and a second grandmother to my girls. She was very outgoing and loved to laugh. I loved going over and spending time with her. Our in-laws went on numerous vacations with my parents and my husband and myself. We all got along really well and had a great time. Over the years, it became more difficult for Mom to be able to travel or to be able to put together the holiday gatherings by herself. All the girls would work together to make the holiday dinners at Mom and Dad’s, without Mom having to worry about doing the cooking. This solved the problems and kept our holidays going. Eventually, Mom started having some anxiety about having the holiday get-togethers at her home, so we moved the holidays to another sibling’s house. This began to make things easier, however little did we know it was only the beginning for our family.
Mom started to constantly ask everyone to repeat things. We thought she was losing her hearing; however when we finally took her for a hearing test, we discovered she could hear just fine. My husband has a large family. There are six kids: five girls and one boy. Family gatherings were rather large and so when Mom would ask us to repeat things, we didn’t think much about it. As it turns out, things kept getting worse.
My father-in-law took Mom to a family doctor who suggested we take Mom for neurological testing. This testing began our journey and the family’s education of dementia and Alzheimer’s. I had my Master of Arts degree in Psychology and learned about dementia during my studies. This assisted me in helping prepare my husband with what to expect in the future.
My husband and I went with my in-laws for to go over subsequent neurological testing results from the neurologist. The results were heartbreaking. Mom was diagnosed with dementia of the Alzheimer’s type. I did learn that it effects patients differently. The doctor did a “smell test” on Mom. This told the neurologist which parts of the brain were immediately affected by the dementia. This also meant that Mom would not be able to cook and place leftovers in the refrigerator, because she would not be able to smell if the items were spoiled anymore. Mom would need to put labels on all the food she purchased or cooked to date them, so they would not consume spoiled food.
Things have progressively gotten worse over the years and the family has different ideas on how to handle Mom. My father-in-law refused to have any help at first then he allowed one daughter to assist with medication management. As time went on, it wasn’t safe for Mom to cook or be in the kitchen. Their meals needed to be brought in or prepared by someone else. This caused both of them to lose an extreme amount of weight, which I understand is normal in these situations.
Mom would forget things during conversations. She started forgetting people in her life. She started repeating questions over and over because she forgot the answer you just gave her. She was able to remember some select things, like if my husband was going to visit. She remembered that someone important to her was visiting, however she did not remember who was visiting.
Mom got to the point where she was unable to bathe herself or to wash her hair anymore. My father-in-law took over those duties and had mom’s hair cut short to help him out. Mom’s demeanor also changed. Instead of being happy all of the time, Mom would just sit in one place on the couch, without any expression on her face. It was very difficult to see her this way, as I knew she had such a loving heart.
Mom started getting lost in her own home, where she had lived for over 20 years. She was unable to locate the restroom, and had to be directed by her husband. She would walk by a mirror and start talking to herself in the mirror, because she thought it was her friend. She would carry on a conversation with herself at great lengths.
Sometimes Mom would get scared and hide in the closet and cry. She would get dressed every day and pack a suitcase, so she could be ready to “go home.” Mom could not tell you where “home” was located, however she knew “someone” was going to pick her up to take her home. She no longer recognized her own husband and thought he was just a nice old man who helped her. This was very difficult for my father-in-law, as the two of them have been married for over 62 years.
My father-in-law did not want to place Mom in a memory care facility or a board and care location. He wanted to care for Mom’s every need, however he finally realized he was unable to do everything for Mom and for the home. He was extremely exhausted. He finally decided to get a housekeeper and a caregiver for Mom. He started out slowly with the caregiver at 4 hours a day for 3 days a week, then went to 8 hours a day for 3 days a week, then went to 8 hours a day for 5 days a week. Mom did perk up a bit spending time with the caregiver, as she treated her much like a playmate. They would talk and laugh for hours. This seemed to make Mom happy during the time the caregiver was at the house with Mom, however when the caregiver left, Mom became solemn again. The doctor finally told them it was time to place Mom in a facility or board & care home.
My father-in-law had been reluctant, however he finally went to look at some different locations to place Mom. He liked a few but still felt uncomfortable placing her at that point. He was afraid of what it would be like to live at home without her.
Eight years later, my father-in-law is placing my Mom in a board & care facility so he can sleep at night and not be totally stressed about Mom no longer recognizing him and wanting to leave him. Now he will have to go to visit his wife who no longer remembers how he cared for her and wanted to keep her at home with him for the rest of his life.
This journey is to be continued. It’s a journey that our family hasn’t chosen, but it has chosen us. We will continue to be there for Mom as we all still love her so much, regardless of what the dementia has taken from her.
Thanks Julie B. for sharing your personal journey! Dementia is such a horrible disease that affects every family member, not just the person who has the disease. I’ve been honored to help your family during this journey.
Dementia is so very sad. Thank you for sharing your story.