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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. I am so sorry to hear about your mother's passing. I am glad to hear you are taking time to care for yourself, that is so important. Sending hugs to you. Jill (Team Member)

    2. , I'm s sorry for your loss, I'm sending love and light <3 Oh my goodness,

      It does get better with time, and the memories get sweeter than sad. I'm glad she is at peace, and I hope you are too. I'm glad that you are taking care of yourself. It's so important. You are needed in the world. - Warm (((hugs))), Donna (Team Member)

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

    1. Thank you so much! That was really thoughtful of you -
      We are doing well - I go see my dad every week if I can, I just saw him this weekend actually. It is tough to watch him 'fade' but while he doesn't know who I literally am, he 'knows me', if that makes sense.
      The conversations don't exist and that is really the toughest part; i.e. I can't tell him about my life or really anything, I just let him talk and listen. But it's ok.
      I still of course fear for myself, but again, staying healthy physically and mentally is the most I can do.
      Thank you again for reaching out Donna.
      John

    2. , (((hugs))),, John. I'm so glad that you're able to see your dad.

      Yes, it makes complete sense. They may not be able to "place" you, because you may exist outside of the time he is existing in (if that makes sense, lol), so you look different. But you "feel" like home, you feel safe and comfortable. And that's a blessing. He may not be able to interact with you, but if you tell him about your life, he'll hear you.

      There are tests to see if you are genetically at risk. You're doing a great job if you're watching your health, activity and keeping mentally and physically active. Stay in touch and let us know how you are doing time and again. - Warmly, Donna (Team Member)

  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 AlzheimersDisease.net 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. https://alzheimersdisease.net/living-coping 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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