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February 17, 2020

Journey Through Dementia – Life With My Mom

31 Comments/ 3/ 1

Dementia is slowly claiming my mom. I have shared on my blog many times in the past couple of years the struggles that my mom has had as her dementia worsens. It helps me to write things out and to remember them this way and I think, judging from comments from others, it also has been helpful to some others who are on a similar journey with a loved one. I don’t write these posts to garner sympathy. Not one bit. There are so many other people who are going through so much more than we are going through as a family. I write because it helps me to process, to remember and to somehow come to terms with the changes in my mom.

I arrived after an interesting day of travel on Thursday to see my sweet mother in her Memory Lane room . When I got there there was another lady who was trying to sit down on her bed with her. I finally was able to convince “Margie” that I wanted to spend time with just my mom and I would come visit her later if she wanted. When you are in a unit like my mom is in there are a lot of folks that drift in and out of the rooms. They don’t always know where they are, they don’t always respond appropriately but you just have to go with it. I know it bothers my mom a lot at times – she likes her privacy and doesn’t always know how to deal with wanderers and the staff is usually able to keep folks where they are supposed to be but sometimes it happens.

My mom didn’t know me this visit. That is the case more and more. She said three times in the span of 10 minutes that she thought I must look like my mom. It made me giggle each time and I told her each time that I must look like her. She was just puzzled by that and asked me why. When I told her that SHE was my mother she was astonished. Maybe a little incredulous. She just could not understand that I was her daughter.

So what do you do when you visit someone with dementia? You focus on what you can talk about that will be uplifting. You redirect the conversation when she starts saying “I want to get out of here”. You look at cards that have been sent to her and talk about the people who have sent them. You look at the pretty pictures on the cards. You talk about your new kitten. Anything that is a distraction from her current situation is the right thing to talk about.

One of my favorite things to do with her is to look at photo albums. I have a couple that I have made for her that have family pictures with big labels with the names of the people in the pictures on them. That helps to remind her that there are a lot of people that care about her. Her current mantra is that her family never comes to see her. That is another typical thing for folks with dementia to believe. Even though it is not true it is her reality. Her days run together and she has no concept of time. She did not remember I was there the day before or even that morning. I have learned to not take that personally. It is just her memory is so bad that she does not remember. It does no good whatsoever to correct her so I just make vague comments and keep the conversation steered away from topics that make her sad.

Looking at pictures together helps to keep her aware of her family that loves her.

I know my mom never thought this would be her life. She is comfortable and well taken care of and relatively safe. She is very independent and tries to do things on her own when she probably shouldn’t. Falls are inevitable but she has not hurt herself so far so I am very grateful for that. I learn each time that I am with her something new or something is reinforced.

This visit I learned that no matter what obstacles that try to keep me from her it is well worth anything to be able to spend any amount of time with her. The trip was a fairly short one but it was precious and so worth the time, money and inconvenience on my part to see her. Totally worth it.

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31 Comments

Leave a comment
  1. Virginia
    February 17, 2020 at 06:20 am

    Yes, yes, yes. You are spot on. So hard. Not sharing for sympathy but for processing is what you are doing and. Red to do. Redirect. Never correct. Love. Hold hands. Keep your sense of humor. My mother was always shocked that I was her daughter. Walking with you In love and prayer. This is holy time. Our moms taught us well for such a time as this. I love you.

    Reply
    1. Beth Ann Chiles
      February 21, 2020 at 07:26 am

      Thanks, Virginia. You have been my biggest source of help during all this because I saw how gracefully you handled your own mama’s decline. It is the support of others who help us through times like this and I am so grateful for you.

      Reply
  2. Darlene
    February 17, 2020 at 07:07 am

    There is so much to learn about dementia and how to deal with our loved ones who suffer from it. Thanks for your posts because they are very helpful. I know at first I felt compelled to correct mom but now I know not to. Bless her and you. Sending hugs.

    Reply
    1. Beth Ann Chiles
      February 21, 2020 at 07:25 am

      Thanks, Darlene. It is all a process, isn’t it? We learn as we go along and figure it out. Thanks for the virtual hugs. They help a lot!

      Reply
  3. PK
    February 17, 2020 at 07:32 am

    ❤️

    Reply
    1. Beth Ann Chiles
      February 21, 2020 at 07:24 am

      Thanks, Paula.

      Reply
  4. jena c. henry
    February 17, 2020 at 07:43 am

    Thanks for the updates about your dear Mom. With my new podcast, I’ve been on social media more, especially sites about baby boomers and there are so many blogs about dementia, some written by caregivers and some by the person with dementia. I pray we find a cure. Thinking of you.

    Reply
    1. Beth Ann Chiles
      February 21, 2020 at 07:24 am

      Thanks, Jena. Yes–there are so many that are sharing their journeys as caregivers and as those suffering with the disease and it is so helpful to be able to know that there are others who are out there going through similar things. I pray we find a cure as well. It is a horrible disease.

      Reply
  5. Jill Jeffrey
    February 17, 2020 at 09:15 am

    I think you should put this into book form. It would not only show how to deal with situations with love and kindness but remind people that they are not alone in their struggles.

    Reply
    1. Beth Ann Chiles
      February 21, 2020 at 07:22 am

      Thanks, Jill. I have thought about it but haven’t done anything to really make it happen. Someday…

      Reply
  6. DiAnne Ebejer
    February 17, 2020 at 09:35 am

    My heart goes out to you having to go through this. It took nine years for Alzheimer’s to take my Dad until he passed at 76. He had early onset Alzheimer’s. I’ll be praying for you and your Mom.

    Reply
    1. Beth Ann Chiles
      February 21, 2020 at 07:21 am

      Thanks so much, DiAnne. 9 years is such a long time and having had a brother in law with early onset Alzheimer’s as well I understand what a horrible and slow process that must have been for your family. It is such a horrible disease and I am sure you had a lot of challenges that you faced as a family. Thanks for stopping by and sharing and offering your support!

      Reply
      1. DiAnne Ebejer
        March 01, 2020 at 08:43 am

        Thank you Beth

        Reply
  7. Shirley Matthews Dunn
    February 17, 2020 at 11:30 am

    I so understand you writing this journey down. Writing memories down and helping you cope with the moment. The pictures of her are so pretty. You would never know she is not her self. Beth Ann, I know this is so hard but remember she is still here and you and your family are blessed to still have this precious soul. I lost my Mama at 39 in 1972 and I so wish that I could have spend more time with her. God bless you all.

    Reply
    1. Beth Ann Chiles
      February 21, 2020 at 07:17 am

      Thanks for your support, Shirley. I can not begin to imagine how difficult it was to lose your mom at such a young age. That must have been so difficult and I am sure you miss her every day still. Our mamas are very precious.

      Reply
  8. susi_snaps
    February 17, 2020 at 12:40 pm

    Every moment you spend with her is precious even if she doesn’t realize it. It’s so so hard and for me that was the worst – not knowing what to say and what to talk about with grandma. I’m so glad we had the kids and could regale her with all their accomplishments.
    Sending hugs!

    Reply
    1. Beth Ann Chiles
      February 21, 2020 at 07:14 am

      You are so correct that each moment with my mom is so precious. And yes–having kids to talk about is a wonderful diversion. I always do the run down of the family and then move on to cat pictures. 🙂

      Reply
  9. Carolyn Powell
    February 17, 2020 at 04:04 pm

    Having a parent with dementia is like losing them over and over again.

    Reply
    1. Beth Ann Chiles
      February 21, 2020 at 07:13 am

      It is, Carolyn. But I am so grateful to have her with us still to physically hug. Thanks for stopping by.

      Reply
  10. Mama's Empty Nest
    February 17, 2020 at 06:29 pm

    You give us a realistic and true insight into the world of dementia. I thank you for giving us that awareness and good information on dealing with the process of it all. I can only imagine how difficult it is, but please know that I am positive you are helping others who also are going through the same thing with every one of your posts about your dear mom. Be blessed, my friend, and know we care.

    Reply
    1. Beth Ann Chiles
      February 21, 2020 at 07:12 am

      Thank you so much. That means so much to me. I know it helps me to share it and from the response of some folks I do think it is helping others who have similar situations. You often learn the most from others who support you during a time like this and I am happy to have had several who have walked this journey before me that have been very supportive. It is not a road anyone wants to go down but talking about it helps.

      Reply
  11. Jeni
    February 17, 2020 at 07:16 pm

    I love the book that you made her. Such a great way to remember loved ones. Your love for her is so clear.

    Reply
    1. Beth Ann Chiles
      February 21, 2020 at 07:10 am

      We love the way the book allows us to show her who everyone is. She recognizes some faces but usually has difficulty with the names. I don’t know if she looks at it anymore when there is not someone there with her – she used to. But anything that helps connect her to people that love her is a good thing so it is worth every minute of looking through those pages.

      Reply
  12. reneewilliams7
    February 17, 2020 at 07:43 pm

    Wow…I feel for you. But she looks good. And I am so thankful that you are sharing this journey and sharing these tips. I haven’t had a lot of experience with dementia, thankfully. Most of what I’ve experienced in a similar vein comes with having to tell my poor uncle (again and again) that he’d had a stroke. It was awful. Each time was so devastating for him, and I had to break it to him as gently as I could each time…but it did get frustrating after the fifth time in the span of an hour or so. I’m not proud of that. But I tried to handle it as best I could. I appreciate your candor here. I hope that I never have to lean on your for guidance, but I’m grateful that you’re here and that you share your journey. Your mother does look happy in the pics. Hold on to those smiles. Big love to you!

    Reply
    1. Beth Ann Chiles
      February 21, 2020 at 07:07 am

      She does look good, doesn’t she? She is almost always pretty happy when I visit even if she “wants to get out of there” . I can usually redirect the conversation and we can have something else to focus on. It is a hard disease and so many people have to muddle their way through trying to figure out how to deal with the different stages. We are blessed that she is someplace where they take such great care of her and where we feel that they truly care for her.

      Reply
  13. Andrea Eisen
    February 18, 2020 at 08:10 am

    So very beautiful. Thank you for sharing these special moments with Mom with us.

    Reply
    1. Beth Ann Chiles
      February 21, 2020 at 06:59 am

      Thank you Andrea. I always wonder when I write these posts if they are ones that will help someone someday and even if they aren’t it helps me to write it down. Thanks for stopping by.

      Reply
  14. Minnesota Prairie Roots
    February 18, 2020 at 09:38 am

    Oh, Beth Ann, tears fall as I read your heartfelt words. It’s tough, so tough. But you are handling this loss (because it is a loss) in such a positive way and all of your advice is spot on. Many hugs, dear friend. I’m glad you got to see your mama again.

    Reply
    1. Beth Ann Chiles
      February 21, 2020 at 06:59 am

      You understand so completely this journey. It is such a difficult thing to be separated by distance and not be a part of her day to day life but I have to have faith that those who are her caretakers are doing what needs to be done. We have good communication with them and that helps to ease the anxiety on my part.

      Reply
  15. Katybeth
    February 18, 2020 at 02:00 pm

    This is so heartfelt. How wonderful to be able to soak up so much time and love with your Mom–no matter how it looks. Hard too. It’s not a Hallmark card. It’s Life. <3

    Reply
    1. Beth Ann Chiles
      February 21, 2020 at 06:56 am

      THanks, Katybeth. It is definitely not a Hallmark card but it is such a blessing to still have her with us and to be able to physically see her and be with her. And she always hugs me, says she loves me and laughs at my silliness. That is what I will remember.

      Reply

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