I worked in many other firms prior to launching my business and one of the nuggets I learned during my development was that change is a process. We need time to adapt to the changes happening around us and we need to give ourselves the space to practice, practice, practice.
I’ve been collecting my past blogs in a book format and as I go back and re-read some of my blogs, realize that many lessons I learn take time to stick.
Some of the key themes I struggle with the most seem to be:
- My parents don’t remember the changes they seem to accept (We are ready to move to the retirement community)
- For my parents, independence trumps safety, logic and trust (Accepting the “new truth” from those with dementia)
- My parents are unable to accept or understand, or both, that there is something wrong (How many times can you hear you have dementia?)
I’m not perfect, but I will continue to try to my best to help them, even when they don’t seem to want to help themselves. I understand that they may not know what is wrong or where to start. Accepted.
What are some of the things you struggle to adapt to in helping your loved ones?
5 thoughts on “Adapting to dementia in a loved one … it’s a process”
The confabulations. The denial my mom has, the denial much of the rest of the family has.
Everyone’s situations (and relationships) are different, and it sounds like your friend Kate Swaffer knows what will work for *her*, in her situation. Accepting “new truths” won’t work in mine. Maybe in time, when all of the family realizes how sick and confused my mom it, that mode with be best….but as we are in “transition”, no.
The lies that come from my mom’s mouth are mean and hurtful (this is nothing new, she’s been like this all my life, it’s just more so now), and I don’t want my grandchildren hurt by her words. Heck, *I* don’t want to be hurt by her words! At the same time, I realize that 90% of the time, it does no good to argue with her. But to allow her to spewing vitriol towards small children? Sorry…I can’t just stand by and smile at her, either. Some times the only reasonable way to handle it is to limit exposure.
I think back to your post where your parents’ neighbors helped them break into their cars, because the neighbors for whatever reason believed that you kids had hidden the car from them (shame on you kids! lol), and you suggested that if people ever thought that, they should contact the proper authorities, rather than “helping” directly…and that maybe there was more to the story than they were being told.
That’s where my family is at right now, except that not all family members are on the same page. My moms’ confabulations can be very convincing, and she pits us against each other over slights that only happened in her mind. Some family members still trust her to drive children here and there…
I know you value Kates’ advice, and for many people it might work. I read the “6 most important things” to a person with dementia that she wrote, and I can’t say I disagree with them or would have any different priorities should *I* ever develop dementia. But with every choice and action, comes consequences. Some times people with dementia are so horrible to those around them, there is no other alternative than to distance yourself from them, in order to save yourself. As you’ve said, they have a right to live the way they want to. But we have rights, too.
I know my relationship with my mother is nothing like yours with your parents, and I’m happy for you! It does help me though, to see how even though it’s clear you dearly love your folks, that dealing with them is a challenge. It puts what I’m going through into a better perspective.
As always, thank you for your blog and your words!
You are welcome. I think we have more in common that you know. I remind myself when I meet others what I once was told “When you met one person with dementia, you have met one person with dementia.” How we perceive their changes, how they manage through and the new behavoirs that emerge are so variable … and can vary within a span of a few minutes.
My siblings and I have our disagreements. I knew how much my parents were changing and no one else recognized it at first. I am local and after they each have come in and spent time with them, they now recognize how different the two before them have become.
Just yesterday I sat next to my mom as she said the most horrible things. My brain spun as I tried to use some of the tools recommended to really reset the moment. There are quite a few blog posts that I just have not had the courage to post.
I figure I ended up with two parents with dementia for a reason. I will only survive if I can make some lemonade and hopefully help a few others on this same awful journey.
Thanks for you note. Kay
Thank you so much for your reply…sorry it took me so long to get back here (I usually read my RSS feeds from my phone at night before I go to sleep, not the best time or medium for commenting), You might be pleased to know that I’ve tried several of the “techniques” you post about (either that have worked for you, or worked for others), and have had some successes in dealing with my mom. Some is better than nothing. 🙂
At the same time, I would love to read the posts you say you haven’t had the courage to post. This may very well be just me, but if I read is the rosy side of dealing with a loved one with dementia…I start to doubt my own sanity/worth/abilities.
The friends who have been down this road before me have helped the most when they say “Sometimes…it’s just horrible, and there’s nothing you can do.” Just hearing that puts a more realistic perspective on my situation.
And I’m not sure what this will mean to you, coming from a total stranger, but as I read your blog, I can’t help but think “What a wonderful, kind, loving daughter she is.” Not saying that just to blow smoke…it’s true. 🙂
Hi! Thanks for the note. Some things in the moment are too hard or embarrassing to share, but I know will eventually come to light!
I completely understand (why do you think I either sign with my initials and/or not my full name? lol). I just found out this week my mom hasn’t paid the HOA dues on her condo since May…. And yet it’s that limbo/transition phase, where she insists she doesn’t need help.
Hang in there, and I will do the same.