Author Jan Larsen-Fendt, RN, BSN, writes what life is like inside Alzheimer’s disease, to help other caregivers through the highs and lows of caring for a loved one with dementia.
Learn more from the writing that she has shared with Alzheimers.net.
Life Inside Alzheimer’s
“Mrs. Johnson, you’re going to be a mother!”
Oh, the joy those words can bring to a family. Thanks to modern science, women can often find out just days after conception that they are pregnant. Then the months of preparations begins; notifying friends and family, attending baby showers, turning the former “office” into a nursery, attending birthing classes and reading all of the books that have been written about pregnancy and childbirth. Then again, there is no hurry; there are nine months to accomplish these tasks. In addition, let us not forget the well-meaning friends who offer advice and stories of their own pregnancies and birthing events.
Then, the baby is born. What a joyous occasion! 10 fingers, 10 toes, the baby is perfect. Friends and family visit, usually with some sort of meal that can be re-heated. There are also, of course, gifts. Many, many gifts, as well as numerous offers of help.
Eventually, life settles into a new sense of normalcy. The new family realizes that their life has changed. They can no longer just leave the house at the drop of a hat; cupboards must be rearranged so that the child cannot reach anything dangerous and their sleep is interrupted as they listen for any sound that is out of the ordinary. There are appointments with the doctor; there are times of uncertainty with every new behavior the child displays. In time, the family learns how to take care of this new little person, even though the baby cannot yet communicate its needs with words. As the baby grows, it learns new words. Next, the child begins to attempt sentences. They may not always make sense, but gradually the family learns what the child is trying to communicate. So, life continues in this new family.
“Mrs. Johnson, your mother has Alzheimer’s.”
These are the words that no family wants to hear. There is no joy in these words. While family members may have had an inkling that something was different about mom, many people will ignore the signs and symptoms, in order to avoid hearing those words. There is often no warning for family members if they do not have frequent contact with their loved one. These words can put a family into a tailspin.
In many cases, there is no time to prepare for this. Most of us do not prepare for a family member receiving a diagnosis of dementia by reading books prior to the diagnosis. Although such classes may exist somewhere, I have never heard of a class geared toward families of loved ones who might develop dementia.
Consequently, the daughter begins a new chapter of her life. Unfortunately, this time there are no parties, showers, gifts, or time to prepare. Instead of friends dropping by, as they commonly do when there is a new baby, they sometimes begin to pull away. They often do not know what to say. They may be uncomfortable around the new behaviors exhibited by the loved one and may not know how to relate to a person with dementia.
Once again, the daughter finds herself preparing for what is to come. However, this time she does not have a timeline of nine months. A diagnosis of dementia is usually a journey of the unknown. Just as every day can be different with a baby, every day can be different with a person with dementia. This is not to say that people with dementia are babies, but if you have known a person with dementia, you know that eventually the behaviors and needs become similar to that of an infant.
Eventually, life settles into a new sense of normalcy. The loved one may have to move in with her children. The home may have to be rearranged for the safety of the loved one. The family begins to feel isolated. Sleep is interrupted, listening for unusual sounds. They can no longer leave the house without arranging for care. Often the primary caregiver begins to concentrate less on their own health and more on the health of their loved one. There are doctors to be visited, lists of medications to become familiar with, and decisions to be made. Hopefully, the caregiver will seek out support groups and organizations to help her through what lies ahead. And so, life continues in this new family.
There are often statements made that caring for a person with dementia is akin to caring for a child. Although that phrase can be disturbing, I do understand the feelings behind it. Through no fault of their own, the person with dementia begins to revert to a time earlier in their life. They begin to “un-learn” things that they have known how to do their entire lives. Perhaps it is the ability to put food on a fork and put the fork in their mouth, or putting their underwear on before they put their pants on, or even how to sign their name. If you are not familiar with the realities of dementia, these events can be frustrating.
Unsurprisingly, there is also the memory loss. Short-term memory is usually affected first. Forgetting discussions held just five minutes earlier, forgetting the names of familiar objects, and, sadly, no longer remembering the names of family members.
Just as caring for a child can be a responsibility that lasts years, so can caring for a person with dementia. I would not have traded either experience.
Do you have experiences with life inside Alzheimer’s that you want to share with other caregivers? We would like to hear them. Share them with us in the comments below.
About the Author
Jan is a nurse who spent her 20-year nursing career caring for the elderly in such settings as long-term care, rehabilitation and hospice. She became certified as a Long Term Care Ombudsman for the State of New York, as well as a Certified Eden Alternative Trainer. Jan has also volunteered with her local Alzheimer’s Association. During her nursing career, Jan also wrote and performed stand-up comedy, and positively believes that humor can be advantageous in connecting with people, even in times of adversity.
When Jan’s mother was diagnosed with dementia, Jan became a co-caregiver for her mother. Her father took on the role of primary caregiver and was able to carry out his promise to Jan’s mother to care for her in their home. Jan is interested in helping others through the highs and lows of caring for a loved one with dementia.
She now enjoys writing about topics close to her heart: aging, dementia, caregiving and Death with Dignity, based on her own personal and professional experiences. Jan’s other passion is nature photography.