Interview: Jennifer’s Journey of Caregiving for her Mother

In Rochester, New York, Jennifer navigates the complex and emotional journey of caregiving. At 52, she has dedicated the last 17 years of her life to caring for her mother, a once vibrant nurse now grappling with dementia. Her story is one of unwavering love, the gradual shift of family dynamics, and the stark realities of caregiving. Jennifer shares her insights, from the benefits of Trualta’s resources to the complexities of the medical industry. Her experience offers a candid look into the life of a caregiver who has mourned the loss of her mother long before saying goodbye.

Tell us about yourself

I am 52 and I’ve been taking care of my mother solidly for the last 17 years. I used to work full-time, but I am currently disabled myself and so is my husband.  I have a loud small dog and do a lot of crafting to keep my sanity.

What is your family dynamic?

Mom and I have always lived together. It kind of gradually switched from us taking care of each other, to me taking on more of her responsibilities. We were always super close. 

What led up to your caregiving?

When I moved in with my husband, he had a double house and we realized it was easier for my mom to move into the apartment upstairs. She had mild cognitive impairment when she moved upstairs around 2003. She was still working as a nurse. Now she’s living downstairs in one of my converted craft rooms. The stairs got too hard.

Tell us about your caregiving experience.

In 2006 my mom was deemed disabled because of dementia. She was 62 and had been talking about retiring from her job as a nurse.

She turned herself in for medical errors. They started shadowing her. They noticed more and more things that she would do. They said, “enough is enough. It’s not good for you or our patients.” She thought everyone was out to get her. She would say, “I didn’t do anything wrong. I am a good nurse.” I had to tell her, “Yes, that’s why you turned yourself in.”

She experienced depression and kept to herself. She stopped going out with friends and she had been a social butterfly before. We used to go shopping and go to lunch. We used to be inseparable. We had marathon shopping days even if we didn’t buy anything. Slowly she didn’t want to do that anymore. She was tired all the time. 

Our relationship didn’t change that much until the dementia kicked in harder.

Slowly we took away her ability to drive. She had been driving to houses we hadn’t lived in in 10-20 years. She couldn’t find her way home. Those were the super scary days when she was out and mobile.

So I drove her to appointments and to the store. She was never left alone because she lived upstairs. At first I’d take her to the grocery with me. It was fine and great for a long time, but we had to dial back how much she went out.

Since 2023 she’s  been bedbound. She can’t walk or stand. She’s been hospitalized many times in the past few years. She falls. Once I tried to take a vacation in 2014. It was the last time we went anywhere. That was for a long weekend. She fell at 3 a.m. and couldn’t get up. It was a few hours before I could get there. It was killing me. I have not taken a vacation since then. 

I do everything for her. I brush her teeth, wipe her butt, take care of her bed sores, empty her pee pan, shop, cook, and clean. Seeing as she is here and on the same floor, it’s like taking care of a child. It’s just something you do. I’ve done it for so long. 

It’s going to feel so weird when I don’t have to do it anymore. I mourned the loss of my mother many years ago. I had a full out emotional breakdown. Around the time of that last vacation. She wasn’t there anymore. It’s not the same mom. Not the one I would go shopping with. She was my best friend.

How has Trualta helped?

I found Trualta through Lifespan and they set me up with all kinds of stuff. The last six months have been so hard. I went through all the lessons. I try to review them when I have time. 

What was the biggest surprise to you as a caregiver?

The biggest surprise is how frustrating the medical industry has become. It’s unbelievable to me…making sure she has the right care plan to cover what she needs.

What advice would you give others?

  • Caregivers need to take time for themselves once in a while.
  • Get a durable power of attorney as soon as you can.
  • It’s important to only have one primary caregiver. It could get complicated with siblings. 

Best tips?

  • Get a power of attorney/health proxy.
  • Get a medical alert. I like this one because there is not a subscription.
  • I use a nanny cam to make sure she is okay.
  • Contact your local Area Agency on Aging. ElderSource and Lifespan did a lot for me. They’ve come in and have done health assessments. 
  • Never get rid of medical devices. You may need them in future.
  • Safety-proof the house. Get grab bars. 
  • Everyone needs a good advisor for Medicare-based programs. I’m going to change my mom over to one that has rides included so she will get 12 rides a year.

Do you consider yourself a caregiver?

I’m definitely a caregiver.

What has been helping you?

Crafting….when I can find time to do it.

What do you miss?

My mom.

An Opportunity to Help

Caregivers like Jennifer embody selflessness and resilience, yet they face immense physical, emotional, and financial challenges. Jennifer’s journey of caregiving  the critical need to focus on and support caregivers, a group often overlooked despite their invaluable role in our society. Initiatives such as Trualta offer vital support, but there is a broader call for action. Communities, healthcare systems, and policy makers must recognize and address the unique needs of caregivers. This includes ensuring access to medical and legal advice, offering mental health support, and fostering a network of understanding and assistance. By prioritizing caregiver support, we not only aid those who give so much of themselves but also enhance the quality of care for those they lovingly serve. Jennifer’s experience is a poignant reminder that in caring for caregivers, we uplift the entire fabric of caregiving and community well-being.

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