Alzheimer’s, Vision Loss, and Caregiving
by Steph McCoy
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.
Re: Alzheimer’s, Vision Loss, and CaregivingPosted by Quietwater on 11/27/2016 at 4:50 PM
I was primary care giver for my husband's grandparents. His grandmother was doing odd things when we returned home from the Peace Corps with our infant daughter and adopted ten year old son. She would release the handle of the baby basket she was helping carry to open a door or put a package of meat in the cupboard and dishtowels in the refrigerator. When she became incontinent, we convinced grandfather to move her to a nursing home. By then he was in his eighties and couldn't cope. When it was his turn, he became paranoid, easily confused and argumentative. When his eradic behavior began to be a problem for our junior high aged daughters, we first moved him to a senior living location where he had a studio apartment. Eventually he had to be moved to a foster home for adults when his hostility to being thwarted required greater supervision. When he stopped talking or making any effort for self care, we moved him to a closed ward in a nursing home to be kept clean, but refused them permission to tube feed him. All of these steps were difficult to make but we tried to decide on the basis of safety and what we thought he would have wanted when he was capable of making decisions. It is a hard thing to watch someone slip away a little more each day.
Re: Alzheimer’s, Vision Loss, and CaregivingPosted by maryhiland on 11/27/2016 at 5:54 PM
Steph, I read your post with great interest, because I have written a book about the very things you talked about. My experience was different only in that I am totally blind and have no siblings to help me. I made many mistakes along the way, which I wrote about in my book. I had no idea how much stuff and how many things she had in her house, so in retrospect, I should have found a way to go there and clear out everything she would not need in assisted living. then after the move, I spent months trying to deal with that stuff. I also didn't realize that she had Alzheimer's, so we would get into arguments about the silliest things. I learned that you can't reason with a person who can't reason. She too was very independent, strong willed, and completely against the move. Then her vision declined rapidly, and so did her hearing, so it was difficult to find things to entertain her with, as she hated television, thought Bingo was boring, and couldn't grasp the idea of radio reading service. Most of our conversations dissolved into her complaints about everything from cold food to her aching back. It was the hardest 2 years of my life. Just know that I hear you, and if you ever want to talk, I'm sure we can arrange it.
Re: Alzheimer’s, Vision Loss, and CaregivingPosted by Stephanae on 11/28/2016 at 11:59 AM
Thank you for commenting Quietwater. My heart breaks everytime I hear of people who have Alzheimer's and the family members/caregivers. Even when I go to visit my mom at the nursing home and I see people in different stages of the disease it's difficult knowing that these were once thriving minds.
Re: Alzheimer’s, Vision Loss, and CaregivingPosted by Stephanae on 11/28/2016 at 12:08 PM
Hi Mary, thank you for posting a comment. What is the name of your book? Is it on Amazon by any chance? I'd love to read it. Prior to my mom's diagnosis I almost wished I were an only child because dealing with a sibling who was in denial was extremely difficult. But I learned from the Dept of Aging that this type of scenario happens frequently.
Alzheimer's is such a cruel disease and I feverently wish there were a cure. The way you describe your mom reminds me of mine. When I was talking with the doctor who diagnosed my mom and asked her would it have made a difference if she received diagnosed earlier and she told me it wouldn't have happened no matter how much I wanted her to be assessed. The doctor said she was just too strong willed and wouldn't have complied.
Re: Alzheimer’s, Vision Loss, and CaregivingPosted by Empish on 11/28/2016 at 12:27 PM
Steph, Thanks so much for being vulnerable and transparent in sharing such a personal story. I am not going through this with my mother but I have learned and understood more through what you are dealing with. My mother too is a strong and independent person and I have thought many times of what to do when it comes to that time in her life if she becomes ill or can’t care for herself. My brother, sister and I have had conversations about it but I know that we need to have more.
Re: Alzheimer’s, Vision Loss, and CaregivingPosted by maryhiland on 11/29/2016 at 8:49 AM
Hi Steph. It's eye-opening to see how much we all share in dealing with our aging parents. The name of my book is The Bumpy Road to Assisted Living, a Daughter's Memoir, but I'm still searching for an agent. I know a lot of people use self publishing, but I'm holding out for an agent and a publisher. We learn from our mistakes and the mistakes of others, so as I went through this time, I kept a journal, hoping to remember, so I don't put my own children through those struggles.
Re: Alzheimer’s, Vision Loss, and CaregivingPosted by Quietwater on 12/11/2016 at 4:40 PM
Steph, I recently read a book about early onset Alzheimer's from the point of view of the person going through it. The book is available from the National Library Service and is titled "Still Alice," the author's name is Lisa Genova and the number is DB 68429, I think it gave me a better idea of what it is like for the person experiencing the disease.
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