Despite the challenges you may encounter, remember, these moments will not last forever. Thinking back to sitting on a green leather couch between Mom and Dad, each of them holding one of my hands, has become a most treasured memory.
Vicki Tapia is on the management team of AlzAuthors.com, a blog that represents over 140 authors who have written about dementia. Her book, Somebody Stole My Iron: A Family Memoir of Dementia, shares her caregiving journey with her parents.
In 2004, within a few months of each other, my father, Herb, age 91, received a diagnosis of Parkinson’s-related dementia and my mother, Betty, age 86, was diagnosed with moderate Alzheimer’s disease. Shortly after, they relocated to the city where I reside. Confined to a wheelchair, Dad needed skilled nursing care, so he moved into the memory care cottage, while Mom moved into her own apartment in another wing of the same assisted living facility. It didn’t take long for me to realize that my preconceptions of spending more quality time together proved to be much different than the actual reality. Mom and I didn’t end up in the kitchen baking chocolate chip cookies together. Usually within minutes of bringing them to my home for a visit, they began to ask to go “back home.” They called my house “too drafty.”
Although I had read whatever I could find about dementia, most of it was written from a clinical perspective. I searched high and low for practical advice from actual family caregivers and found little written information. For me, it became on-the-job training, or perhaps I should say, stumbling, as I settled into the role of a caregiver. There were times it took me a while to discover the right approach. Dad had a laid-back nature and never reacted to my missteps. My feisty Mom, on the other hand, was more volatile. Her negative reaction to something she perceived that I said or did was instantaneous and distressing to us both, so I did my best to avoid these blow-ups.
Looking back, I view myself as a graduate of the “dementia caregiver school of hard knocks.” To help you avoid some of my blunders, I’d like to share a few tips.
If possible, avoid reminding your loved ones they’re losing their memory. I learned this the hard way. It only took once. On Thursdays, I morphed into Mom’s amateur beautician. The phone call usually came in the early afternoon: “Vicki, I’m ready.” This meant she planned to wash her hair as I drove over to the assisted living facility. My job was to roll her wet hair onto curlers, dry it with a hand-held hair dryer and then “style” it. One day, when I walked into her apartment, I found her standing at the kitchen sink, where she had finished washing her hair. Water dripping onto her blouse, she kept repeating, “I can’t find my glasses.” I then proceeded to use a poor choice of words. I am not proud of this decision. “Oh Mom, don’t worry, it’s the disease that’s making you forget,” I said. My tongue often got ahead of my brain and stress caused odd things to pop out of my mouth. She looked at me with fire in her eyes and said, “Don’t you ever say that to me again.” And, I never did.
When I put myself in my Mom’s shoes, I realized that if I had dementia, I wouldn’t want to be reminded of it either. In the early 2000s, the stigma of dementia was even worse than it is now. Understand why your loved ones may react this way and only mention their condition if they specifically ask about it.
Sometimes, it’s less stressful for everyone to go along with the fantasies dementia patients may create. Mom often admonished me, “You’re fired” and accused me of stealing her money “to travel.” Empathize with feelings rather than focusing on angry or accusatory words. I found that arguing with Mom or defending myself only made her angry or devastated her. Eventually, I learned that redirecting the conversation or just listening until she wound down and changing the subject was more productive. I can only imagine how frightening life must be for someone affected by dementia.
Caregivers may wish to evaluate what items in their parents’ home have sentimental value and take steps to protect these items. Be aware that people with memory loss may “accidentally” throw or give away important papers and belongings. A history book about our family that I had compiled and which included interviews with my parents, family stories and genealogical charts went missing from my parents’ home. Thankfully, I had also printed additional copies for other family members. I suspect Mom threw this family history away during one of her “cleaning” moods. It didn’t occur to me to remove the book until it was too late.
Consider placing items with monetary value in a safe place as well. Before my parents moved into assisted living, all Mom’s valuable jewelry disappeared. Did she give it away? Did she “clean out” her jewelry box and throw it away? This discovery caught me off guard. I have no idea what happened, but it left me wishing I had quietly put her fine jewelry somewhere safe and replaced it with costume jewelry.
One day when I went to visit at the assisted living facility, Mom greeted me at the door, proudly announcing she had “cleaned out” her wallet, except for $15. She told me she “threw” everything else away. “Everything else” included her Medicare, insurance and I.D. cards. It’s far easier to remove important papers and identification cards than to replace them. Months later, I found all of the cards buried under clothing on the floor in the back corner of her closet. I didn’t know whether to laugh or cry. She hadn’t thrown the I.D. cards away; she had buried them!
Every week or so, Mom asked me for some spending money, so I would give her a few dollars. I knew she liked to ride the facility bus to the Dollar Store and figured that might be where she spent her money. Guess what else I later discovered on the floor in a corner of her closet? A pill bottle where she had carefully collected and rolled up $140. Since dementia patients may hoard items, consider searching in the far corners of your loved ones’ home if something goes missing, before assuming the items are gone for good. You never know what you might find!
Living in a memory care unit sometimes means that everyone shares everything. The white dress shirt Mom had designated for Dad to wear at his funeral vanished, as well as his socks. His bed sheets disappeared and Mom noticed. Visibly upset, she returned to her apartment and brought Dad her own sheets, which also vanished on the next wash day. Dad never made a fuss when his belongings disappeared and once in awhile, unpredictably reappeared. Although I know it’s important to bring items that make loved ones feel comfortable in a memory care home, I would not recommend leaving anything with sentimental value, because that may be the last you ever see of it.
Dad has been gone nine years now and Mom, ten. Time has softened the stress, but the memories remain vivid. Despite the challenges you may encounter, remember, these moments will not last forever. Thinking back to sitting on a green leather couch between Mom and Dad, each of them holding one of my hands, has become a most treasured memory.
Read more stories like Vicki’s here.