Editor’s note: November is National Alzheimer’s Disease Awareness Month. Stephanie McCoy, VisionAware Peer Advisor, relates her family’s battle with the disease and her journey in becoming a caregiver as a person who is visually impaired.
The Long Road to Diagnosis
Twenty years ago Alzheimer’s took my grandmother. And now my mother has been diagnosed with it. Though the contrast of 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 and ironically enough these factors allowed her to live independently up until three months ago.
Sure, there were plenty of moments when we could not convince her people weren’t using a remote control to operate her refrigerator, heat, or air conditioning. Calling 911 because of imaginary gas leaks or an oven that got too hot became the norm. Then there were the phones. She kept buying new phones because something was "wrong" with them. Or people using her credit card to order food from her apartment.
Sundowners, an ailment that causes symptoms of confusion after "sundown," was a term I had 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 towards evening.
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 appalling state.
Mom fell, was unable to get up, and as a result remained there until she was found a day and half later. The ride to the emergency room was agonizing. Even though we had a historically contentious relationship, whenever mom needed me I was always there. Yet now because my life drastically changed I felt totally helpless.
A few years ago I lost my vision due to macular hole and was simultaneously diagnosed with primary open angle glaucoma. Though I have adjusted to my legal blindness over the past few years, 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 most disturbing part of the ER visit was when we went back to see her. Even with my limited vision I was shocked at the frail shell of the woman who was my mom. She could barely speak, was very confused, and 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 did live, and after a week’s hospitalization, our mother was later released to a skilled nursing facility for rehabilitation. It was during the rehabilitative process where it was determined she had Alzheimer’s.
Children Become the Parent’s Caregiver
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.
It was apparent from many pieces of documentation she 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 to 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 everyday, attending therapy sessions, 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 was aware of 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 were eventually on a first name basis. The only kink was my initial discomfort each time I approached the nurses 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 I 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.
Be aware that even though the 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 meal times, therapy sessions, bedtimes, activities.
Ask about 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. Typically a doctor or a nurse practitioner needs to sign-off when a loved one leaves the facility for a visit with family.