Terry from Maryland
Maggie was my mom. She suffered with non-Alzheimer dementia for 5 years before she passed. I am one of her seven daughters. We also have a brother who lives in a different state. In the beginning, when my mother could still do things for herself, all seven daughters pitched in to give her the care she needed. However, as she digressed, caregiving dropped off to just 3 sisters and a niece we paid to watch her while we worked. We signed Mom up for all programs available in Maryland to get caregiver help. We only received offers for a few supplies. My mom was placed on a waiting list for all other services until she died, 3 years after being placed on the waiting lists. However, her last 2 years of life, she was in an excellent hospice program run by Heartland Hospice. A nurse came to see her once a week, and a health aide came twice a week to help with cleaning mom and changing her bedding. Mom lived with one sister who took care of her at night while my niece slept. The other sister and I took alternating weekends to give my niece and the other sister a 2 day break. During the weekends, we'd come over at 7:00am on Saturday and leave at 7:00 am on Monday. We provided 24 hour care during those weekends. We did these things for mom at least daily and more, but the 2 days of help were appreciated. During her last year of life, she was too weak so her daily care consisted of watching her at all times when she was awake (which was most of the time). Sometimes, she would try to get out of bed and could have hurt herself as she was very unstable on her feet. We needed caregiving help to give us a rest at night, because, mom rarely slept through the night until about her last 6 months of life. Help with bathing her was also needed, as it was a difficult task to perform alone as she could not help at all. Also, having a caregiver just come in and give us a few days to ourselves would have been nice as we were consumed with the care of our mom and other things in our lives suffered. Although I took every other weekend, on the weekend I had off, I had to take care of my own housework so I didn't get much time to myself. It was even worse for the sister who had her every night of the workweek. The best part of this experience was being able to take care of one of the best mothers ever. It was a privilege to take care of someone who spent her life caring for others. She knew she was loved and would thank us when she was calm. The most challenging part was having to watch this intelligent, vital woman (she was a professional caregiver up to age 72 and a minister) deteriorate before our eyes. Finally, the challenge of finances. We never received any help from the state run programs, so all we had was my mom's Social Security check and small savings. During her last year of life, the savings was gone, and the SS check didn't go far enough to pay my niece for caregiving, buy food, and supplies and pay for additional caregiving help when we needed it (weddings, vacations, funerals, etc). One of the sisters who didn't supply physical care, sacrificed greatly and made up the difference we needed. Without her help I don't know how we would have made it. I would give the following advice to other caregivers. 1. Keep your loved one with you if possible. 2. Don't think you're not strong enough to give the care needed. Those of us who cared for her until her death, never envisioned that we were strong enough, but God gave us the strength needed for the tasks. 3. Sign up for all programs as soon as the sickness starts, even if you don't need the help yet. Average time on a waiting list in Maryland was 2 years when we signed mom up in and that may have changed for the worse since my Mom's death. 4. Don't waste energy getting mad at the patient. They don't know what they are doing--it is the illness. I spent wasted time arguing back and forth with mom, just further agitating her until I learned my lesson. After that, I always talked soothingly and sweetly to her, no matter what and she would eventually respond to it.