As an Army brat, I learned to embrace change. While I hated leaving good friends, I could quickly jump in and find new friends in our new location. It has never really been a scary concept for me and when it doesn’t happen, I quickly find I grow restless. I love to learn new things and challenge myself, and change helps foster that environment for me. However, caregiving brings a host of change for everyone. Sadly, it’s now mostly un-positive changes.
For the first time I’m recognizing how much the changes are depressing and discouraging me. My mom is now in a wheelchair full-time and too weak and unsteady to ever get back on her feet. While she was in hospice and “graduated” out, it just seemed to bring on the need to change equipment, medications, doctors, and her schedule. While my mom is not rapidly declining, she is withdrawing and less-interested in doing the community activities as well as the little arts-and-craft activities we would do together.
She’s moving in and out of varied issues from temporary blindness to mid-dinner regurgitation. We never seem to find a root cause. When she woke up one morning with a very swollen and bruised hand, we just focused on treating for comfort since mom could never really report what occurred and it did not seem to be broken.
Change used to come with the potential for something better. Unfortunately, I recognize that almost ever change I’m facing comes with something less-better than it was before. I recognize what I can’t change, I’ve taken a huge leap with MemoryBanc to change the things I can and help other families on this journey, but I admit that some days, managing as a caregiver can be incredibly discouraging. Confessed.
This disease is horrid. I feel and share your pain. Am going thru the same thing with mom. I just cherish the little things, sometimes holding her until the anxiety abates. {{hugs}}
Thank you. I always try to find the little things. Today, I had to deal with another change and it just hollowed me out. I know I will wake tomorrow refreshed and ready to keep going forward.
When my husband’s mother went through this horrendous disease (at least her version) years ago her daughter did the lion’s share of everything to deal with the ravages from the condition. When his mother eventually died my husband told his sister that she was the faithful servant and how he was both grateful and sorry it was so much her responsibility. Unfortunately the burden falls on those in proximity and the faithful servants who can and will bear the burden. They are real heroes.
Thanks for the note!
I totally get it. Being on the caregiver roller coaster is exhausting, physically and emotionally. Tomorrow will be five months since my mother died and I’ve been thinking about all of the changes she went through with her battle with cancer, and how it changed our relationship, both good and bad. You can take solace in the fact that you are helping others and being a loving daughter.
Thank you.
Thanks for sharing your grief on the changes in your mum. I am never sure with Maureen if I am seeing change or she is responding to something. On occasions I am pretty sure she uses sleep to hide from her thoughts. What else can she do there is no other place to escape you have dementia?
It gets to us all from time to time. As you say the changes are all downhill and never positive. Dad used to have TIAs – mini strokes – and each time he recovered, but always a little bit further down the slope. Hang in there and keep sharing so you know you aren’t alone with this.