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Alzheimer’s, Vision Loss, and Caregiving

The Long Road to Diagnosis

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.

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

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. Continue reading…

32 thoughts on “Alzheimer’s, Vision Loss, and Caregiving

  1. Thanks for sharing your story and information.. Best to you and your mom!

  2. 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

    1. Thank you for reading and commenting Lynne. 💖

  3. 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’m giving you a slight side eye. You gotta go Steph!

      2. 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. Lol okay as long as it’s on the list lol

      4. Yeah, unfortunately it’s one of those must-dos. I’ll keep you posted.

  4. 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

  5. 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!

    1. Thank you so much Camie! Your prayers are appreciated. 💖

  6. 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*

    1. Awe, thanks Khaya. 💖

  7. Well written and good informative article, dear Steph.
    XxX

    1. Thank you Patty. 💖

  8. 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.

  9. 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

    1. Thank you D. We all were very fortunate things turned out the way they did.

  10. Amazing and powerful article Steph. Alzheimers is a horrendous disease, and very tough on family and caregivers. Thanks for sharing it. You also are an incredible writer.

    1. Thank you for your kind words Carla. It means so much to me. 💖

  11. 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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