Calgarian Samantha Palmer-Forrest shares some of the experiences she’s had while caring for her mother and offers insight into the challenges of being a care partner
I have been familiar with Alzheimer’s disease my entire life, but for the past three years, it has become a part of my daily routine. My mom, Shawn, was diagnosed with early onset Alzheimer’s in 2016 at the age of 56. I became her full-time caregiver at the age of 27.
My mother was the mom that all my friends wanted to have. The one you could talk to about anything. She raised my brother and me as a single parent and was always there for us when we needed her. My mom was kind, affectionate, social, bubbly and funny. I could always depend on her.
My mom started showing symptoms of dementia in the summer of 2015, when she was 55 years old. It began with increased forgetfulness and memory troubles. When she got lost driving to her family doctor’s office, I knew something was wrong, and that this was not a normal part of aging.
My maternal grandmother passed away in March 2014 from complications related to Alzheimer’s, and her mother, my great-grandmother, passed away in March 2003 from Alzheimer’s. My mom was showing symptoms that were very similar, and I knew in my gut that she had Alzheimer’s, too.
My mom insisted that nothing was wrong with her. I made an appointment with her family doctor and she was referred to a cognitive clinic. My mom underwent a variety of tests and on April 1, 2016, she was officially diagnosed with Alzheimer’s. I had already accepted that she was ill, but now it had become real and our lives would never be the same.
At the time my mom was diagnosed, I was a full-time online student living at home and I became her primary caregiver. Being her caregiver never felt like a choice, it was something I had to do to thank her for being a great mother and for always being there for me.
Following her diagnosis, my brother and I tried to do whatever we could for my mom, including trying to access all the resources we possibly could. This proved to be very challenging.
My mom receives Assured Income for the Severely Handicapped benefits (AISH) through the government. The program was hard to deal with from the very beginning. My mom’s assigned caseworker changed regularly, they were hard to contact, lost paperwork more than once, were slow to process it, and staff weren’t always knowledgeable. It got so bad that my brother and I had to get a social worker to help us.
My mom also had a Dementia Care Team caseworker who worked for Alberta Health Services (AHS). She came to our house and did an assessment but there was little follow-up. Since she was part of AHS Home Care, my mom’s caseworker did not continue with us when my mom was eventually placed in a facility. I think it would be more efficient and helpful if dementia support caseworkers were with the family from the diagnosis on, including through home care and during placement. Dementia support requires special training and knowledge that not everybody has.
We tried home care, but my mom absolutely refused to accept it. A different person came each time and mom was very concerned about strangers in her house. She’d cry and get angry and would sometimes lock herself in her bedroom. She wasn’t able to get to know them or build a relationship. It should be the same person at the same time every week.
Health care aides weren’t allowed to drive my mom anywhere. It would have been incredibly helpful if someone could have taken my mom out for recreation and socialization activities.
As my mom declined, I became her almost constant companion and could not leave her alone for more than two hours. Being my mom’s caregiver was a full-time job without pay and it affected my personal life greatly. Most people in their twenties are starting their own lives and families, but I was trying to take care of a parent, finish school, find a new career. I graduated from university in April 2018, but being my mom’s caregiver dramatically reduced my job options.
Dating is complicated. I get asked whether or not I will get the same disease as my mother. It can be hard to explain to others exactly what it is, and how it impacts daily life. It is often too much to comprehend and they don’t want to get involved in my life of caregiving.
Self-managed home care was an option, but one we couldn’t use, as family members, friends and informal caregivers are not allowed to be hired as paid care providers. This is very difficult since family members are so often the ones supplying daily care. I had to get support from Alberta Works to find health insurance and funds for myself.
My mom was placed on the waiting list for assisted living in November 2017. In August 2018, we got a call that a room was available in a care home. But unfortunately, we had to decline due to a lack of finances. We didn’t know that we had to pay for my mom’s room. We thought it was covered. More paperwork and assessments had to be done to be eligible to receive long-term care funding. Even then, the care home needed a certain amount of money up front. We thought we could get money from the bank for the interim but were denied. There was a reverse mortgage on my mom’s house that we thought we could get more money from but discovered we were at the max limit. The terms of the reverse mortgage are that the full amount must be repaid in 180 days of my mom being moved to a facility. We would have to get the house ready to sell and make sure it sold in less than six months or we would lose more than $200,000.
We met with my mom’s doctor at the Cognitive Clinic in September. We explained our situation, problems and concerns. He agreed that placement was the best option for my mom and that her quick decline would mean that long-term care was an option now instead of assisted living. He contacted our Dementia Care Team caseworker to advocate for my mom. Thanks to our doctor, my mom was placed into long-term care in November 2018.
Alzheimer’s is seen as a disease that affects only the old, but that is not true. If a parent doesn’t have a spouse, then it is up to the children to take care of them. I see others my age buying houses, getting married and having children but I have had to put my energy and focus on making sure that my mom is taken care of. Young caregivers are putting their lives on pause and putting their parent’s needs ahead of their own. They need support to get through caregiving, which is a full-time job.
Caregiving is often a thankless job. Being the one closest to my mom, I was often her punching bag. She would take out her frustrations and anger on me and could be verbally abusive. I know it’s the disease and I tried not to take anything she said personally.
Caregivers need as much support as people living with Alzheimer’s, which isn’t always understood. Support is key. I wouldn’t be able to make it through without my family and friends. They reassure me and help me at my lowest points. I have to be aware of my own mental health, and when I feel like I am struggling, I have accessed my own community resources and mental health clinic to help me.
My mom is still physically here, but she is not the same person due to changes in personality, mood and behaviour. She is no longer my support system and I cannot confide in her. It is a strange feeling to miss and grieve for someone who I can still sit next to. When I visit her, she recognizes me and starts to cry. My greatest fear is for her to not recognize me and know that I am her daughter. It is hard for me to think about what the future holds. The loss of my mom and the loss of who she is as a person has been devastating. [ ]