Because Florida is such an ideal place to retire, it’s not uncommon for many of our older community members to have adult children who live far away. As an avid Alzheimer’s Disease advocate, our Director of Client Services, Shayna, has met many others from all around the country. A few years ago, Shayna had the privilege of meeting Emilie Lee, the Creator of the YouTube Channel Talk to End Alz and California resident, at an Alzheimer’s Association Leadership Summit in New Orleans, Louisiana. Over the past few years Shayna has learned about Emilie’s challenges and triumphs as a Long-Distance Caregiver and asked if she’d be willing to share with others in the form of an interview in honor of National Family Caregivers (NFC) and Alzheimer’s Disease Awareness Month.
(Emilie:) My mother was diagnosed with early onset Alzheimer's back in 2012 at the age of 60. She and my father lived in Illinois, where I grew up, until 2017 when they moved to Florida full time to have quiet days and nights and more of a natural routine in a comfortable environment. When they moved, Dad also retired from farming (something farmers never do!) in order to be Mom's full time caregiver.
(Shayna) Can you please explain what your Long-Distance Caregiving Network looks like?
(Emilie) Currently our long-distance caregiving network consists of my dad; his friends where and when he may need help when they're out and about, and occasional visits from other family members and I.
(Shayna) How often do you visit?
(Emilie) About twice a year. If [my parents] didn't come here for the Walk [to End Alzheimer’s] every October, and if flying [to them] wasn’t so expensive we would go visit more often; and likely will have to, as Mom progresses.
(Shayna) Is there something specific that keeps you from visiting more often?
(Emilie) Financial Strain. * The Lees also have two young children; a 4 year old, and an 8 month old*
(Shayna) When you visit, who do you reassess the needs of first?
(Emilie) The Primary Caregiver. [Emilie’s dad]
(Shayna) How do you re-assess what the needs are?
(Emilie) My father is not one to outwardly express how he's feeling. Often my way of checking in on him is when he and I are alone. Typically, the state of their home and his patience level are good indicators of how he's doing.
(Shayna) Have you had a conversation with the primary caregiver regarding what will happen if they can no longer provide care?
(Emilie) Yes, [he] found it difficult.
(Shayna) What do you find to be the best method of communication for your family and why?
(Emilie) For my father, email or text seems to be best. Because Mom is essentially his shadow, he's unable to freely speak on the phone which leaves us with texts and email. I've thought many times about a quarterly family Google Hangout call where we can all see each other and catch up, with this [above] topic included in the discussion.
(Shayna) How do you cope when there is a scenario you feel you want to be closer, but are unable?
(Emilie) FaceTime. Thank goodness for FaceTime. (And looking at flight prices to see if we can swing it financially and/or day dreaming about seeing them both more often.)
(Shayna) Do you see a scenario where you would consider moving to be closer?
(Emilie) My husband and I have discussed this a few times, but it's difficult to up and move now that we have children. Also, the area that my parents live in is not very kid-friendly. As Mom progresses and as the kids get older, if I [can] continue to work remotely, I'll likely stay with my parents for longer periods and work from there.
(Shayna) Does the primary caregiver take advantage of any resources in their area?
(Emilie) Not yet, no.
(Shayna) Do you have any advice [for other caregivers]?
(Emilie) Be present. Enjoy the time that you have with your loved one with Alzheimer's. Try to have open communication within your family so they slowly come around to being more comfortable talking about the reality of the disease.
Though Emilie’s situation is unique to her family, many families encounter similar hurdles when it comes to the dynamics of family caregiving. In the greater Delray Beach, Boca Raton, and Boynton Beach area, we know that family caregiving is often an unpaid, and thanks-less job; not done out of obligation, but out of love! Emilie’s Dad is very fortunate that he has a strong support system close to him, and has not needed any additional resources yet, but that is not the reality for all primary caregivers. Whether you’re a caregiver who is going it alone, a caregiver who has asked for help, or a caregiver in the middle seeking resources like our free Home Care Planning Guide; know that you have options and resources to help you! The key to being the best caregiver you can be, is remembering to take care of your own health. Though it may seem like an unattainable and far-fetched goal, taking care of yourself is the only way to ensure that you’ll be around to continue taking care of your loved one!
BrightStar Care of Delray Beach® knows how overwhelming the responsibility of finding quality care can be; and we know that healthcare is never "one-size fits all." Each member of our team is committed to delivering A Higher Standard of Care for each and every family in our Community. We believe it is our mission to ensure you and your loved ones have all the tools and information you need to make the best decision for your family. If you are a family caregiver, know that it is okay to ask for help from an accredited Agency such as BrightStar Care of Delray Beach® if the physical demands become too much. If there’s anything you need at any point in time during your decision-making, please do not hesitate to contact our team; able to be reached 24/7 at 561.921.0550. We strive to be the reliable, dependable force you and your family count on when it comes to seeking a higher standard of homecare.
(Emilie:) My mother was diagnosed with early onset Alzheimer's back in 2012 at the age of 60. She and my father lived in Illinois, where I grew up, until 2017 when they moved to Florida full time to have quiet days and nights and more of a natural routine in a comfortable environment. When they moved, Dad also retired from farming (something farmers never do!) in order to be Mom's full time caregiver.
(Shayna) Can you please explain what your Long-Distance Caregiving Network looks like?
(Emilie) Currently our long-distance caregiving network consists of my dad; his friends where and when he may need help when they're out and about, and occasional visits from other family members and I.
(Shayna) How often do you visit?
(Emilie) About twice a year. If [my parents] didn't come here for the Walk [to End Alzheimer’s] every October, and if flying [to them] wasn’t so expensive we would go visit more often; and likely will have to, as Mom progresses.
(Shayna) Is there something specific that keeps you from visiting more often?
(Emilie) Financial Strain. * The Lees also have two young children; a 4 year old, and an 8 month old*
(Shayna) When you visit, who do you reassess the needs of first?
(Emilie) The Primary Caregiver. [Emilie’s dad]
(Shayna) How do you re-assess what the needs are?
(Emilie) My father is not one to outwardly express how he's feeling. Often my way of checking in on him is when he and I are alone. Typically, the state of their home and his patience level are good indicators of how he's doing.
(Shayna) Have you had a conversation with the primary caregiver regarding what will happen if they can no longer provide care?
(Emilie) Yes, [he] found it difficult.
(Shayna) What do you find to be the best method of communication for your family and why?
(Emilie) For my father, email or text seems to be best. Because Mom is essentially his shadow, he's unable to freely speak on the phone which leaves us with texts and email. I've thought many times about a quarterly family Google Hangout call where we can all see each other and catch up, with this [above] topic included in the discussion.
(Shayna) How do you cope when there is a scenario you feel you want to be closer, but are unable?
(Emilie) FaceTime. Thank goodness for FaceTime. (And looking at flight prices to see if we can swing it financially and/or day dreaming about seeing them both more often.)
(Shayna) Do you see a scenario where you would consider moving to be closer?
(Emilie) My husband and I have discussed this a few times, but it's difficult to up and move now that we have children. Also, the area that my parents live in is not very kid-friendly. As Mom progresses and as the kids get older, if I [can] continue to work remotely, I'll likely stay with my parents for longer periods and work from there.
(Shayna) Does the primary caregiver take advantage of any resources in their area?
(Emilie) Not yet, no.
(Shayna) Do you have any advice [for other caregivers]?
(Emilie) Be present. Enjoy the time that you have with your loved one with Alzheimer's. Try to have open communication within your family so they slowly come around to being more comfortable talking about the reality of the disease.
Though Emilie’s situation is unique to her family, many families encounter similar hurdles when it comes to the dynamics of family caregiving. In the greater Delray Beach, Boca Raton, and Boynton Beach area, we know that family caregiving is often an unpaid, and thanks-less job; not done out of obligation, but out of love! Emilie’s Dad is very fortunate that he has a strong support system close to him, and has not needed any additional resources yet, but that is not the reality for all primary caregivers. Whether you’re a caregiver who is going it alone, a caregiver who has asked for help, or a caregiver in the middle seeking resources like our free Home Care Planning Guide; know that you have options and resources to help you! The key to being the best caregiver you can be, is remembering to take care of your own health. Though it may seem like an unattainable and far-fetched goal, taking care of yourself is the only way to ensure that you’ll be around to continue taking care of your loved one!
BrightStar Care of Delray Beach® knows how overwhelming the responsibility of finding quality care can be; and we know that healthcare is never "one-size fits all." Each member of our team is committed to delivering A Higher Standard of Care for each and every family in our Community. We believe it is our mission to ensure you and your loved ones have all the tools and information you need to make the best decision for your family. If you are a family caregiver, know that it is okay to ask for help from an accredited Agency such as BrightStar Care of Delray Beach® if the physical demands become too much. If there’s anything you need at any point in time during your decision-making, please do not hesitate to contact our team; able to be reached 24/7 at 561.921.0550. We strive to be the reliable, dependable force you and your family count on when it comes to seeking a higher standard of homecare.