Alzheimer’s, Vision Loss, and Caregiving

Editor’s Note:

I wrote the following article on Alzheimer’s for VisionAWARE. November is National Awareness Month for Alzheimer’s and Caregiver appreciation month. ~Stephanae

The Long Road to Diagnosis

Alzheimer’s, Vision Loss, and Caregiving picture of my mom at the nursing home sitting in her wheelchair. She's posing with her sunglasses and a colorful scarf tied around her neck.
My mom in her room at the nursing home.

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.

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 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 holes 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.

Helpful Suggestions

  1. 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.
  2. Be proactive – ensure POAs (power of attorneys) both medical and financial are signed, witnessed, or notarized, and kept in a safe place.
  3. 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.
  4. 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.
  5. 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
  6. Find out the layout of the facility to become familiar with it.
  7. Decide on a point person and an alternate for the facility to contact with questions or anything concerning your loved one’s care.
  8. Build a rapport with nursing facility staff including nurses, aides, doctors, social workers, and supervisors.
  9. 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.
  10. Ask questions, for example, medication times, what medicines are given, what is the schedule of mealtimes, therapy sessions, bedtimes, activities.
  11. 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.
  12. 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.

32 Comments

  1. Steph, you know my heart goes out to you. This is a very difficult time for you, and I know it cannot be easy. Thank you for this amazing powerful post, and touching on areas one may not think of in difficult times. Hugs <3

  2. I’m sure you’ve heard it a million times now, but you and your mom look like twins. I have two questions: 1) are you afraid that you’ll one day acquire Alzheimer’s? 2) What’s your self-care regimen? Forgive me if these are too personal and I’ll totally understand if you decline.

    1. Thank you Kathy. I’m glad you asked because I am fearful of acquiring Alzheimers. The brain fog I’ve had over the past couple years is bothersome. I got a referral to a neurologist but still haven’t made the appt. yet. It feels like there is something going on but it could be anxiety. I was doing very well after giving up sweets for two months then last week I had a setback but I’ll keep trying to make better food choices along with exercise and even brain games.

      1. I know but I don’t wanna😫. Yup I’m whining. I still have till the end of December to get it done and it is high on my to do list.

  3. Thank you, Steph, for sharing your story. I like the 12 suggestions you listed for taking care an Alzheimer patient while in the nursing home.
    Smiles,

    Sherri

  4. Steph, you are an angel to your mother. May you feel God’s love for you as you care for her. This was a beautiful article and the advice immensely helpful. I will keep you and your mother in my prayers. HUGS!

  5. Powerful and moving, Steph! Thank you for sharing. Oh, btw you do look like your mom, and now we know where you got your graceful sense of style…*hugs*

  6. Steph, this is a terrific article that comes with really good advice. As you may know, I’m going through the Alzheimer’s journey with my mom too. It’s a sad, crazy roller coaster, but I’m slowly getting better at dealing with it (I may feel differently depending on what happens tomorrow, the next day…) Thanks for sharing this.

    1. Yes, I remember you telling me about your mom. If you don’t mind my asking, have you connected with any support groups? The reason I ask I was given a few really helpful resources that I’d like to share with you.

      1. I have connected with the local chapter of the Alzheimer’s Society who run workshops, support groups and provide other resources for care givers. Some of this has worked for me, especially during a particularly bad time two years ago when I had to uproot my mom and move her across the country to live closer to me. Lately I’ve been muddling through with help from family and friends who I’m very grateful for. I am always open to other resources and welcome anything you can share.

      2. Hi Caroline, please forgive me for getting back to you 2 days later. You may already have these resources but I wanted to share just in case you haven’t. The first one is https://www.caring.com/alzheimers and I believe the second one was found through a link on the caring.com (neurotrack.com) Then the third I registered with is AlzU.org and was able to take advange of their tools to test my memory.

  7. Such a difficult situation, Steph. Terrible, a day-and-a-half. Thank God she has you and her son. It is always important to build rapport with any staff you deal with. We have to stay proactive, keep ourselves and our loved one on their radar. I hope you guys find your way.

    Love,
    Me

  8. This was a very powerful post, Steph. I see that you got your looks and style from your Mom. You gave really excellent advice – it is very difficult for carers to comprehend that the change in personality is physiological (deterioration of brain) and not take it personally.

    1. Oh my goodness yes. I struggle with this every time I talk with my mother. She can seem so clear and then right in the middle of a conversation say something so off the wall I have to check myself. Then hard as I try not to argue with her I end up doing just that. I feel like I’m losing my mind Kerry.

      1. You are only human, Steph. My mum in law drove me crazy until she lost the power of speech. One of my friends said that the lucidity mixed with nonsense makes her mother make very hurtful comments (that are not truly intentional).

      2. Yeah, my aunt said that it was a mixed blessing when my grandma lost the ability to speak. Because she had become so agitated and her behavior was unrecognizable. With my mother having issues with me from the time I was born I just don’t know what to expect but man this is rough. I’ve been toying with the idea of her coming to stay with me but I don’t know if this is the right answer either. I’m so unsure of everything right now and don’t trust my judgement. Hate to sound so negative but I’m scared to death.

      3. Personally, I would not have been able to look after my mum or mum in law at home. Like you, I have a disability that would make it too hard on all of us. Additionally, what happens when they need to have diapers changed or hoists for baths? No-one should ever feel guilty for not taking an Alzheimer’s patient into their home. We noticed that mum in law was immediately happier (after moving into the home) because the staff in the care home were trained to deal with mood swings, feisty behavior and lifting. Would you be able to lift your mom? If you haven’t already, I would reach out to an Alzheimer’s support group and a social worker who specializes in geriatrics. Good luck and please reach out for support. My father in law was so insistent that he care for his wife that he ended up almost hating her – couldn’t bear to be in her presence. So sad.

      4. And for all the reasons you outline above I keep going back and forth. I’ve been in contact with the department of aging and while I have yet to go to an Alzheimer’s support group I have joined several mailing lists. One of the reasons I thought I’d like to try it now is because she does have clarity. But there are the physical limitations and the mental/emotional stress. I am going to talk with someone because if guilt is the motivating factor I know that will definitely be for the wrong reason.

      5. That is a great idea, Steph, because an objective counselor can help you decide if it is guilt or a practical, pragmatic decision.

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