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How? What now?
Hope4us
Posted: Monday, February 6, 2012 1:25 PM

In a month life changed! A real diagnosis, symptoms that seem so prevalent now, words I don't understand and left questioning how did this happen and there is my mother early 50's sitting in the living room with me making a blanket diagnosed with frontotemporal lobe dementia.

Progression unknown. Treatment not available. Best option put safeguards in place, be supportive, find support, and hope for the best.

What do I do in this moment? I have found myself using the word can't a lot but growing up my mom always could and even though the person that could may fade in and out I don't want to lose sight of her. So to move forward in a way to comfort myself and foster a positive environment for my mom I will choose to look at things in the following light: there are things that she needs a lot of assistance for all the time now and then there are things that well maybe today just is not a good day for them but we will try again tomorrow.

I am realistic in understanding that my mom who was a whiz at finances just isn't anymore, and that she will now forever always need someone to go in the store with her as to be sure we don't get things that we don't need, there will be moments when I could use help with something and she may just walk away displaying what I call to be oblivious rudeness (being that my mom is not a rude person, but just seems oblivious to some common interactions), and as a family we will have to be her motivation when the recliner in so inviting.

So as i enter this new chapter in my life with a loving family to support my mom it is important to remember even though there are moments that she may seem in the distance, she is here, living well, cooking, wiping away here granddaughters tears and snuggling with her when she has fallen, bringing a smile to many faces, loving with all of her heart and even able to acknowledge here and there that people are helping her. If as her supports we are able to love her half as much as she loves us we will be doing pretty good. Love you mom


LeeH
Posted: Tuesday, February 7, 2012 9:57 PM
Joined: 2/6/2012
Posts: 48


Be greedy Hope4us, be very greedy and grab every moment you can with your Mom while she is still your Mom and not the disease. Don't let anything get between you and her and your family. Make sure they all know her, make movies of her so you can remember her voice, see her face, watch her smile and laugh. You will be so glad when that is gone and all that is left is a vacant, pleasant nod to you, the stranger she doesn't know anymore. Peace of heart to you, dear one.
Waiting for a cure
Posted: Wednesday, February 22, 2012 1:04 AM
Joined: 12/15/2011
Posts: 295


Yes, I agree.  Be greedy.  And take lots of photos and videos, of your mom alone, of your mom and you, the grandkids, etc.  I wish I'd taken more.  I missed opportunities.  I made excuses....it hurts too much, I don't want to record my mom like this....or  She'll feel uncomfortable being recorded just look at the expression on her face.....   Just do what you can to preserve good memories.  
Are there any unfulfilled wishes of hers that remain?  My mom wanted to go to Molokai, in Hawaii, to visit Fr. Damien's leper colony.  I tried to take her and wasn't able to for numerous reasons.  But I did help her enjoy other activities, many of them with her grandsons.  
I would recommend a book called "Creating Moments of Joy" which will remain relevant as time passes.  Also I hear that Understanding the Dementia Experience is good.  I found helpful, but painful, two books by Thomas DeBaggio, who had alzheimers and wrote poignantly. Although these books brought tears, they helped me understand why my mom did stuff I found so "not her."  But don't read any of these during times you could be spending with your mom.