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I would like insight from others who care for someone with lewy body
Caregivers: Dementia | Last Active: Jun 17, 2021 | Replies (21)Comment receiving replies
Thank you for the welcome! This is a new beginning for myself and my LO, major changes for both. My LO is a strong, independent person who has been on their own for many many years, sticks to themselves and doesn't have any hobbies that will transfer over to this new life's journey.
My LO has Lewy Body Dementia, however, I believe he has Dementia with Lewy Bodies as the dementia came first; they were also diagnosed with Mythesnia Gravis and Diabetes.
My greatest challenges will be to keep them active, interested in life, eating healthy (which once they becomes immobile, I can be assured they won't be eating candy!), trying to convince them to wear Depends and getting them to move downstairs so they won't fall down the stairs.
My LO lives in a small community, the next 'big' town, has the only neuro around. From Facebook, research and Google I have found some amazing groups for support, advice and medical information; I also found a Neurobehavior and Memory Clinic,.I believe 1 if 12 in the US, quite a ways from us. I was blessed with an appointment.in November or hopefully sooner on a cancelled appointment. The Neuro in the 'big' town close to us made my LO walk and asked them 3 questions and said, that's LBD; He's also who diagnosed LO with Mythesnia Gravis. I'm going to the experts now 🙂
My greatest opportunities will be the groups I'm in for support, comfort and advice, the medical advice and support I get from the Mayo Clinic and the LBDA local support group and their awesome meetings. Should we stay in this area, I have medical support here in the form of their NP and home health nurse.
Thank you again for your welcome. I'm grateful I found this site. I have already learned so much. ❤️
Edited to add: I welcome any and all advice, friendships, and all else who have been on this journey or just starting out, like me. I'll be an ear to listen, vent, bounce things off of....I think we can all be of comfort and support for each other
Replies to "Thank you for the welcome! This is a new beginning for myself and my LO, major..."
Hello @sturg9876 Nice to e-meet you here on Mayo Connect. I am Scott and I was one of the secondary caregivers for my MIL during her years with dementia. I also was my wife's primary caregiver during her 14+ year war with brain cancer, which produced many dementia-like symptoms for her.
One of the most valuable things my wife and I did immediately after her diagnosis was to complete all of her end-of-life planning. We did all the usual things, such as wills, estate planning, etc., plus she had several items she wanted to gift to others, which she did while alive. This brought not only her, but the recipients too, a great deal of happiness in tough times. We also did all advance directives, POA decisions, and HIPPA decisions. As odd as it may sound the HIPPA decisions helped a ton! We put our adult children on the form so the doctors could talk directly to them and vice versa, which was a terrific help to them and especially to me.
She also had very specific ideas about the Celebration of Life she wanted rather than a funeral so set those up as well. It was nice to know exactly what she wanted and not have to guess.
Her mother did not do these things and it made the time of her death far more difficult for her family. My sister, who passed from COVID also did not do any advance planning and it has become a mess for her daughter to have to sort through.
I also know in my wife case her mental condition/capacities, etc. changed with no notice and at very different times and what we could do one day we couldn't the very next. It did teach me that caregivers need to be ready to be flexible as the journey zigs, zags, and swerves unexpectedly.
Feel free to ask any questions -- I'm always happy to share what I learned.
Strength, courage, and peace
Connect
Hello @sturg9876, along with Amanda (@amandarjro), I would like to welcome you to Mayo Connect. You are asking great questions as you come alongside of someone with a recent diagnosis of LBD. I applaud you for your forward-thinking and planning.
I would like to introduce you to @kristin816. Kristin recently posted about the changes she helped to make for her parents after her dad's diagnosis of LBD. Here is the link to that discussion, https://connect.mayoclinic.org/comment/601239/.
As you read her post you will see how she began planning for their future before the need was apparent as she understood the stress of a move and the changes that would be needed. I encourage you to post to her. You can start the conversation with @kirstin816 and that way she will get a notification that you have posted.
Other than being closer to good medical help and needing to eliminate the stairs, what other changes do you see that your loved one (LO) will need in the future?