Alzheimer’s, Sight Loss, & Caregiving
I wrote the following updated article on Alzheimer’s for VisionAWARE. November is National Awareness Month for Alzheimer’s and Caregiving appreciation month. ~Stephanae
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The Long Road to Alzheimer’s Diagnosis
Twenty years ago Alzheimer’s took my grandmother and now my mother has been diagnosed with it. Though the contrast in how the disease manifested itself between my grandmother and mother was significant, after consulting with my mother’s physicians, it seems that 13 years ago, the clock began ticking for my mother.
While my grandmother lived with the most severe symptoms of Alzheimer’s for roughly five years prior to her death, the disease progressed slowly in my mother. Fear, denial, and disability, contributed to mom’s stubborn refusal to be assessed for any symptom of Alzheimer’s. Ironically enough these factors allowed her to live independently up until three months ago.
Dystonia & Alzheimer’s
In the ’90s my mother received another diagnosis that could have contributed to the situation she is in today. Dystonia, a movement disorder, caused extreme pain and contorted her body until it pulled to the left. To her credit, she refused to use a wheelchair and instead relied on a walker to remain mobile.
When I consulted with her primary care physician about some of her odd behaviors he suggested that a medicine change might help. This news was dampened by my mother’s resistance to letting me talk with her neurologist. So the delusions continued.
There were plenty of moments when our family could not convince her people weren’t using a remote control to operate her refrigerator, heat, or air conditioning. She constantly called 911 for imaginary gas leaks or an oven that got too hot. Then there were the phones. She kept buying new landline phones because something was “wrong” with them. Or people using her credit card to order food from her apartment.
Sundowning, an ailment that causes symptoms of confusion after “sundown,” was a term I never heard of until Mom’s landlord called to tell me of his concerns because she was calling him late at night for the oddest reasons. He said his mom had Alzheimer’s and felt my mom was experiencing this phenomenon as most of her episodes occurred toward evening.
The Call No One Is Prepared For
Then I got a call from my brother. It was surreal. The last time anyone heard from our mother was on a voicemail two days prior and now he said he found her on the floor in an awful state.
Mom fell, was unable to get up, and as a result, remained there until she was found a day and a half later. The ride with my son to the emergency room was agonizing. Even though my mother and I had a historically contentious relationship, whenever she needed me I was always there. Yet now because my life drastically changed I felt so helpless.
A few years ago I lost my vision due to macular holes and was simultaneously diagnosed with primary open-angle glaucoma. Though I have adjusted to my legal blindness, finding my way through the long hospital corridors would have been daunting without my son who led the way. On entering the emergency room (ER) I heard but couldn’t tell from which direction my brother was calling out to me.
The Emergency Room
The most disturbing part of the ER visit was when we went back to see our mother. Even with my limited sight, I was shocked and afraid at how frail she appeared. She could barely speak, was very confused, and was in a great deal of pain. If I didn’t understand the gravity of the situation, I was quickly brought up to speed when her doctor said—because of her age (78) and condition—she may not survive.
Yet, in spite of her extreme dehydration, lethargy, and delusional condition, she lived, and after a week’s hospitalization, our mother was released to a skilled nursing facility for rehabilitation. It was during the rehabilitative process that it was determined she had Alzheimer’s.
Children Become the Parent’s Caregivers
With our mother secured in the nursing home, my brother and I could clear out her apartment, get her affairs in order, and work with the social workers and staff to develop a long-term plan for her continued care. Because I had a great deal of experience in administration, research, and advocacy, tasks requiring phone calls, organizing paperwork, and handling legal issues were relatively easy but time-consuming with my limited sight.
Prior to Mom’s admittance, my brother and I were unaware of how bad things were at her apartment until we had free reign to clear it out to be rented. It took a couple of weeks to toss and/or donate massive amounts of stuff. In retrospect, what was interesting was that except for the bizarre and paranoia-laden phone conversations, she was very careful about exposing some of her deficiencies. As a controlling person, she had set up “systems” to keep track of information.
Insight From The Breadcrumb Trail
It was apparent from many pieces of documentation mom experienced problems remembering personal details like her name, birth date, and social security number. So she collected thousands of address labels and assorted stickers, many of which were stuck on walls, furniture, books, etc.
By sorting through substantial paperwork I was able to piece together a troubled pattern related to her finances. Things like constant banking and debit card errors where she blamed the bank or retailers for the mistakes to excessive mail orders and subscriptions. But to her credit, since she kept a detailed log of medications, phone calls, and to-do lists, I really think this helped to anchor her to reality.
If there was any doubt about the Alzheimer’s diagnosis it was confirmed in her erratic behaviors and sometimes unreasonable demands at the nursing home. Because my brother’s job requires him to travel extensively, I am responsible for keeping the peace. In the beginning, this meant having to rely on daily paratransit service as a means of transportation to and from the facility.
For the first few weeks, I would spend a large quantity of time with my Mom at the skilled nursing/longterm facility. Every day, attending therapy sessions, and meals, becoming familiar with the daily routine, taking her to other areas of the facility for a change in scenery, and picking up and dropping off her laundry.
Because I knew how difficult she could be, I felt it would be a huge benefit to get to know the nurses, doctors, therapists, and aides. As a result, we got to the point where we awere eventually on a first-name basis. The only kink was my initial discomfort each time I approached the nurse’s station because I was unable to see who was manning the desk.
As my mother settled into life as a long-term care resident, we were able to get her moved into a private room. The move made life a little easier for my brother and me because we were now able to scale back and alternate our visits.
My brother and I do not know what the future holds in how long-term living in a nursing home will affect our mother but for now, we know she is receiving the care she needs. All we know for sure is we will continue to advocate on her behalf as she advances through the stages of this awful disease.
- Learn as much as you can about Alzheimer’s. The Alzheimer’s Association at www.alz.org is a wonderful resource full of helpful information.
- Be aware that even though your loved one may have strange behaviors, unless they are a danger to themselves or others, little can be done without their consent.
- Be proactive – ensure POAs (power of attorneys) both medical and financial are signed, witnessed, or notarized, and kept in a safe place.
- Make decisions in advance on DNR (do not resuscitate) – For example, until it was explained to me, I didn’t know that resuscitation can be quite painful for older people. Often ribs can be broken requiring a hospital stay. Also, this typically means the individual will need to be placed on a respirator.
- Keep a journal with dates and what occurred with the loved one. This will come in handy when talking with medical professionals. I am glad that I kept an ongoing record to refer to.
- When your loved one is admitted to a facility, request a copy of your loved one’s medical records, and ensure they are correct. Any misdiagnoses need to be corrected for appropriate healthcare
- Find out the layout of the facility to become familiar with it.
- Decide on a point person and an alternate for the facility to contact with questions or anything concerning your loved one’s care.
- Build a rapport with nursing facility staff including nurses, aides, doctors, social workers, and supervisors.
- If you feel comfortable doing so, be upfront with your vision issues to help them understand any difficulties you may run into like requesting directions to the restroom, etc.
- Ask questions, for example, medication times, what medicines are given, what is the schedule of mealtimes, therapy sessions, bedtimes, and activities.
- Ask about the cost of care and how it will be managed in a facility versus alternative solutions like in-home care or other senior programs.
- Ask about short-term leaves for the nursing home residents. Typically a doctor or a nurse practitioner needs to sign off when a loved one leaves the facility for a visit with family.
- The header is a human head with brain erased by Alzheimer’s Disease
- My mom diagnosed with Alzheimer’s is at the nursing home sitting in her wheelchair. She’s posing with her sunglasses and a colorful scarf tied around her neck.
- Upset woman on the phone receiving bad news.
- A loving mid-adult African American woman embraces her elderly mom who is in a nursing home.
- Bed at a nursing home with a nurse and wheelchair in the background.