This week, we have a special guest. Enma Espinoza is not only a dedicated wife, community member and mother, but she is also a devoted caregiver to her husband, Frank, who has advanced stages of dementia.
Enma recently was awarded one of our Respite Care grants, in partnership with The Women’s Alzheimer’s Movement™ and Move for Minds, where she spent her time off taking the train along the Santa Barbara coast and exploring the beautiful beaches.
We sat down with Enma to discuss some of the highlights and challenges of her caregiving journey, how taking respite improved her emotional well-being, and how dementia transformed the love and devotion she feels for her husband. We hope you enjoy.
Q: To start off with, can you give us a little background on your caregiving situation and how long you have been providing care to your husband?
“My name is Enma and my story is about love, dignity, respect, integrity, support, and loyalty. I have been caring with love and devotion for my husband Frank, who is in the advanced stages of dementia for about eight years.
At 62 years of age, Frank was diagnosed with this terrifying and painful disease. Frank is the love of my life who has always given so much and has treated me and everyone around him with the utmost dignity and respect.”
Q: When did you first come to notice that he had dementia?
“Frank and I worked different shifts. I worked in the mornings and he worked in the evenings including weekends so it was hard for me to notice much until Frank’s barber called me and brought to my attention that on several occasions he had paid twice for the same haircut job. I also noticed that he began repeating himself.”
Q: What level of care did you provide? How has this changed over time?
“We have been very active by regularly going on walks, hiking, taking health, balance, nutrition, memory classes and joined several senior centers.
During the summer we have been going to concerts in the park, trips with the seniors, community events, musicals, movies, library, dancing cumbia, and salsa.
We also explored new places to visit and by staying socially active, meeting new friends, seeing new places and faces. We have been taking the bus/public transportation everywhere.
As his disease is advancing, it is getting harder; however I still take him on shorter walks. Trips get a bit more complicated as he sometimes struggles with getting in and out of the buses.
My main goal these days is keeping him, happy, calm and if possible stress free. I prepare healthy meals, order his medication, get it ready for the day and ensure he takes it.
I take him to the barber for grooming I also take care of his oral hygiene and make sure he is healthy, and I help him to bathe and dress as I do not want him to fall down. I keep him busy with meaningful activities that he seems to enjoy. I also manage the household duties and our finances.”
Q: What have been some of the highlights and challenges during your caregiver journey?
“Our love is stronger than ever. We fully enjoy every moment together as long as we possibly can. We have kept a positive attitude. We still dance, laugh and sing together. We live a different life than we had planned but we are still living a fulfilling life.
The challenge as this disease progresses is seeing your loved one’s inability to communicate fluently or be present at all times.
It’s hard to watch someone you love eat less, struggle, and unable to do things that were such a part of his daily life before.”
Q: How can one better prepare for the grief and emotional side-effects of witnessing the incremental loss of a loved one with dementia?
“It’s important to nurture your soul during difficult times. Rest is a must. Stay healthy. Celebrate and memorize your best days so you can better deal with your challenging ones. Know that we don’t have control over situations that were brought to us.
We can only have faith that the right solutions and wisdom will be presented to us. For me, education about this disease helps me to understand what it is like to walk in the shoes of a dementia patient.”
Q: Is there any advice or words of wisdom you can provide to those going through similar caregiving experiences?
“Be willing to ask for help. Schedule time off regularly to rest. Know that you are not alone. Embrace every moment. Laughing helps through this journey.
Surround yourselves with positive people. Take one day at the time. There are other people going through a similar journey that can be of great help and support.
My experience is that I met friends who are going through a tough journey, and still they have offer to take us to concerts in the park, grocery shopping, run errands, and offer advice and support. I also found out that living your life outside of the caregiver role helps you to be a more loving, patient and a healthy caregiver.”
Q: What advice would you give other family caregivers who may be experiencing burnout and fatigue?
“Find a way to take time off for yourself and strongly consider respite care to help you recharge. I know how hard it can be sometimes because I experienced it, but it is important to do it, to take that day off, to dance, play, sing, and laugh.
Do not be afraid to ask and accept help. We cannot do it alone. Schedule a day off to go on a trip, do something you don’t do every day outside of the caregiver role.
Be kind to yourself. Treat yourself with love and compassion and above all, be patient with yourself, and know you are doing the best you can.”
Enma is not alone in the love, devotion and challenges she experiences in dementia caregiving. Her story highlights the importance of hope, optimism and self-care.
If you or someone you know could use some time off from caregiving to recharge, reflect and rejuvenate, you can learn more and apply for one of our respite care grants here: http://homecareassistance.com/moveforminds.