Husband to Amy and Father to Megan and Justin. Primary caregiver for Amy.
Which of these best describes you?
I am a caregiver - Amy was diagnosed in March 2013 at the age of 43. We now know she was showing signs of the disease as early as 2 years prior but thought it was depression due to the loss of her mother. When we learned of the diagnosis she was already in the moderate stage of the disease. Our lives have changed but we are meeting the disease head-on and I am her husband and primary caregiver.
If your loved one was experiencing signs of dementia, would you keep it a secret?
Who are you here for?
Myself - Amy was a wonderful mother to our two children, Megan now 16 and Justin 13. She stayed home after Justin was born and embarked on a career as a stay-at-home mom. She enjoyed participating in their school activities and volunteering in their classrooms. Amy has always been quiet but enjoys spending time and laughing with her friends and family. She has always been independent and we have been blessed with 20+ years of marriage. She is a fantastic wife, mother, daughter, sister and friend and the changes in her personality and abilities has been hard to watch.
The thing I miss most is...
- Our relationship- our friendship and the fact we can no longer be partners in our decisions for our future. Also, seeing the loss of the emotional connection between my wife and our kids. Alzheimer's is know as being a disease that isolates the individual and family and I believe for me the isolation comes from a loss of my best friend, companion and comforter.
I first began to worry when...
- "Several years ago when Amy became withdrawn and less social with friends. She became less involved with the kids after school. She was forgetful and began putting things away in different places. Her personality changed and we both became frustrated because we did not know why. She had a few minor scrapes with the garage, which had never happened before and she was inattentive with the kids."
The hardest part of my today was...
- Some days are harder than others. Right now it seems hardest when I am tired or overwhelmed with the number of things I want or feel the need to get done. The day is hardest when I allow a lack of patience to get the best of me. I have realized I am not in control and must follow Amy's lead. Being willing to stop, wait and re-set the moment often enables us to accomplish a task but it cannot be on my timeline.
The best part of my day today was...
- Seeing Amy smile and laugh. We have experienced the effects of confusion and frustration- aggression and striking out at us. As the disease has progressed and Amy's self awareness has waned she is more content and relaxed. We are now able to get her to smile and laugh and we see parts of her old self.
I didn't consider myself a caregiver until I had to...
- Initially I did not consider myself a caregiver, instead I was a father and husband doing what was needed. But, as the disease has progressed and Amy has become less able, I see I am also a caregiver as we must provide assistance will all of Amy's activities of daily living.
I have found the most support from...
- Our families and others who are also walking through this disease as caregivers. Our local support group and the volunteer facilitators are wonderful. The Alzheimer's Association has been a blessing as has the memory care center with their social workers and doctors.
I have felt most abandoned by...
- I don't believe I feel abandoned but at times I wish we could go back to life before this illness, back to the old friends who we miss since our move.
The thing that would surprise most people about my day is...
- Perhaps the extent of what we actually have to do for Amy, from waking up in the morning to going to bed at night. Dressing, cleaning up, changing the bed, personal care and meals, it never stops and we must coordinate her needs with our daily routine of work, school, errands and activities. The key is one day at a time, and a detailed calendar.
The funniest thing that has happened was...
- We try to find something to laugh about each day, whether we purposely try to get Amy to laugh or laugh at something in the moment.
The gift of being a caregiver is...
- Hopefully, demonstrating to our kids that we can get through the tough times and can focus some of our energy on positive things such as advocacy. Also, that making a commitment to your spouse means sticking together through good and bad. Lastly, I am still able to share my love with Amy, even though she no longer realizes it.