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What do you fear most when it comes to Alzheimer's disease?

An Alzheimer's diagnosis can be overwhelming - not only for the person but for family and friends.

Our community shared their insight on what they worry about the most when it comes to Alzheimer's disease; how do you relate? What preoccupies your mind when you think about Alzheimer's disease?

  1. Hi, my mother started showing signs of alzheimers late 2019 but we were all unaware of it until she started accusing her sister of things that didn't exist. It went on to her not properly dressing herself , like wearing one sock . We were all unaware of this situation because she was living alone but sometimes her younger sister would check up on her , I had to go to university and my sister was working far from home so she decided to live closer to work... therefore my mother was left all alone. Since I was born she was a quiet person, never really had much to say around people. She was more open to me than anyone else because when I was in high school , we lived together. Mid 2020 her older sister decided to live with her in her own home but she only got worse. Most of the time I didn't know what was happening because my sister kept things away from me and when I found out from other people , she would tell me that she didn't want to stress me since I have to focus on school. Corona came and I had to go home, my mother was brought home and I had to take care of her . That was the beginning of a very painful and confusing journey for me. I didn't know where to even start bathing my mother. I was over 18 but didn't imagine in my early 20's I'd be taking care of my mother. I learnt how to help her because at that time we didn't know what was going on and as grown ups are they believed it was witchcraft because we had no knowledge about alzheimer. There were pills given to her which seemed to be making things worse and It broke my heart seeing that she was on medication but nothing changed. It got worse everyday . Until this year where her sister felt that she was tired as she's also old. So no one could take care of my mom .. there was no other choice but to take her to some sort of a nursery home. It was hard for me yet no one ever really talks to me about it , asks me if I'm coping or something. I fear ending up in her situation because of the depression I have. I basically live in fear of losing her and myself. I pray everyday but no answers. I have accepted though it was had , during holidays she was fetched from the home and brought home to us. I had fun being with her. She likes music, dancing and cuddling every morning cuz I sleep with her . She's my whole world, yes it's hard not being able to communicate with her everyday like we used to but I promised myself to make every moment count.

    1. Thank you so much for your vulnerability and for sharing your story with us. This is so much for anyone to deal with, but I know that it can feel particularly overwhelming when you are young and feeling so alone. Although a difficult decision, it sounds like moving your mom into a facility was the right decision for you. It is important that both you and your mom receive the care and attention that you need. Our community is here to support you, whether that be to answer questions that you might have to just to lend an ear or a virtual hug. Warmly, Patty (Team Member)

    2. I'm so sorry that you're going through all of this without any support. Have you that about counseling? It is helping me alot. I use the online services because I'm with my mom. You are in my thoughts.

  2. I worry about getting it myself. Kathy M team member.

    1. Thank you for sharing your thoughts and feelings with us. I am Kathy's husband and just read your post. Kathy and I co-caregive for her mom. I feel for anyone who is a caregiver and also has concerns about having this disease themselves. I try to support Kathy and want her to know that I will be there for her no matter what. Do you have others that support you emotionally? Scott Team Member

    2. Thanks Scott, my wife does support support me emotionally - and we both are scared to be honest, if I or even her should get this disease. I'm obviously more 'at risk' potentially because of genetics. Through this process we have learned an incredible amount about the disease (and the 'system', meaning the healthcare system in the US). I never realized until it was right in front of me how much I didn't know. We know we will both care for the other if it should happen to one of us - but it is still terrifying, though there is only so much you can do (stay healthy is #1) to try and prevent it as much as possible.
      That is so great that you both are able to care for your mom; I wish we could have done that for my dad but because of our jobs it just wasn't possible given the amount of care he needs.

      Thank you again for reaching out - all the best, John

  3. Caring for the person with Alzheimer's is such a time and effort consuming task. I know my wife was at the end of her ability to look after me. I offer one advice - start researching diet and how it plays a major role in Alzheimer's disease. Most people don't know how the body fuels itself - one of only 2 ways Carbohydras or Ketones (forget about looking at the ketogenic diet as a wight loss diet) Step one - start counting how many carbohydrate the person is consuming every day.

    1. Hi , diet is such an important factor in our health, and there is really no good information or education on nutrition. And trying to find a reliable source can be tricky. I hope you share more of what you have learned and experienced. = Warm regards, Donna (team member)

    2. Thank you for sharing these very important thoughts about diet. What is the purpose of counting carbohydrates as it relates to Alzheimer's Disease in your estimation? Scott Team Member

  4. I have Alzheimer’s disease. What I fear most is not recognizing my loved ones. Also being being too much of a load on my husband and not being able to help him with any daily tasks.

    1. Thank you for sharing your thoughts. Do you have friends and family to speak with about your concerns? If you haven't already, what plans can you begin to implement to help you and your husband with daily and future tasks? The editorial team has an article about living with Alzheimer's. I'm sending along a hug. Nancy Team Member

    2. Thank you for sharing with our community. Please keep us updated on how things are going for you. We support you and your family. Scott Team Member

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