We all know there’s no cure for dementia and that it only gets worse with time. That knowledge can make it very easy for us to succumb to feelings of helplessness, hopelessness and despair. I’m interested in learning what resources (internal or otherwise) other caretakers are using to resist getting trapped in those emotions. Thank You
Andy, my answer is not directly responsive to your question, but here goes. When I was drafted into the US Army in the 1960s, I was a recent college graduate anxious to start a new life working for a major company. But the Army excels at teaching discipline. I learned to get up every day and go to my assigned post and do the best I could.
Being a caregiver reminds me of the Army - I don’t want the job, but I have no choice. So, I do all the chores that a caregiver must do in recognition of my resposibilities and without joy. The discipline that I learned in the Army makes it possible to continue each day.
Hi Andy, Believe it or not, I had a dream about your question last night. Ever since my Mom got quiet and stopped being able to communicate as well, I’ve been having dreams about her and conversations with her in my sleep. I know it is just my brain’s way of filling in the silence, but I have found that those “conversations” to be a remarkable way to sort through questions I have. Your question stuck with me!
I truly do not feel helpless, hopeless or despair. In the 8 years I’ve been taking care of my Mom, I’ve had moments of frustration, sadness, anger, annoyance, fear, worry and every other negative emotion this journey brings out. But there is also joy, gratitude, silliness, excitement, happiness and fun! For me, the key to all of this is acceptance and like @A myALZteam Member said, gratitude. I can’t change the fact that this horrid disease is part of our lives, or that it is taking my beautiful mother from me. But my Mom was always one for finding the joy and beauty in every situation, so I work every day to do the same for her.
As for taking care of myself, I have a great therapist that I talk to on videochat every week, I check in with supportive family and friends regularly (and they check in with me), and I prioritize having something for myself every day. I run a small home bakery, mostly cakes and breads, that lets me do something fun. I get a little bit of exercise every day and I remind myself to be kind to myself. I have learned so much from being a caregiver, life lessons that I never would have learned any other way. And ultimately, I work to take care of my Mom and myself so that when this journey is over, I will have no regrets. ❤️
For me what works, is gratitude. It may sound cliche, but I feel that I have been blessed starting with a second chance at life with a transplant with a kidney donated by my daughter. After that I was able to find more joy in simple things- sitting on the dock at the lake, listening to loons, having a cuppa on the deck with Ken, seeing family, music, etc. Ken has had mixed dementia for 9 years and I’m grateful that he’s been with us this long and still able to express his love for me. Yes, he has difficult days with his temper out of control, especially about driving and I get angry. I can see that he’s lost quite a bit this past year. Both of his parents had it. I have SAD (seasonal affective disorder) so winters are definitely harder. But for today, we are ok. ❤️
@A myALZteam Member
Andy, there is an end to caregiving, but the end is worse than the journey and no one knows how long the journey will be. All I can offer for consolation for the difficult task of caregiving is to be proud of all you have done. No one could have done better.
Lots of good advice there, Rebekah; thanks for taking the time to reply. Once I was skiiing and was riding the chair lift up the mountain. When I got near the top, I saw this guy (whose mobility I guessed was otherwise impaired) in what looked like a shiny, black kayak with small pontoons going about 60 mph downhill. My chair lift companion nudged me and said, "Further evidence that it's mostly about ATTITUDE." Thanks and Sweet Dreams