Noha is my friend Ian’s wife. She graciously took the time to write about her experience helping Ian and his family cope with his mother’s disease. Thank you so much Noha for your gracious time and touching words.
Please read this if you are supporting a caregiver or if you know someone who is, please share. Noha’s words are wise and invaluable.
I knew Ian’s mom, Karen for a few years before she started getting sick. She was an amazing woman and it’s been difficult for me to see her taken over by the disease. I miss her and I’m sad that she’s not here to take part in our lives, to give us advice, and to enjoy our son with us.
The hardest part of dealing with this disease is waiting. Watching the people you love — Ian, Karen, and the rest of the family — as they suffer, is truly painful. I want to help them, to be able to fix it, and yet, I can’t.
In the early part of the disease, when everyone is adjusting and new issues arise all the time, I focused on dealing with logistics (i.e. safety issues, caretaking, finances). As an outsider to the family, I was able to tackle some things more head on. Albeit, as is often the case in these situations, the solutions and decisions were often entangled in family politics and each person’s stage in coping. It was tough to try to help and not overstep my role.
As time wore on and Karen’s disease hit a plateau, there was less to do and still many unfixable emotions. In this phase, I have wanted to protect Ian from his exposure to the disease. I want us to remember Karen as she was. And I want us to move on. But I can’t really achieve any of those things.
I realized that it’s easy for Ian to bottle up his emotions and that he needed better outlets for them. I encouraged him to seek out counseling and a support group, both of which have been invaluable.
-Noha Waibsnaider, Ian’s wife….
I just came across your blog and I hope you don’t mind that I linked it to my blog…Lewy Body Dementia, Dad and me.
I have read back over some of your posts and your poor Mom is more advanced down the dementia spiral than my Dad. The spitting in church…oh dear and I was cheesed off when Dad spat in the kitchen sink.
It’s a hard road. I too feel anger and at times resentment that I can’t have MY life. And when he has woken me up throughout the night…well!! my teeth grind and I get a nervous twitch in one eye for a day or 2. I don’t know how elderly carers cope. Dad was such a respectful, gentle, jolly man and now he can say cruel, inappropiate things.
I send you and your family lots of best wishes amongst the mayhem.
Thank you, KAT