The Long Distance Caregiver

Far from your loved one who has dementia? Here are 11 ways you can be present without being there.

Author and her son zoom with author's mom who has dementia

My mom and sister were in New Jersey. I was in California.

It broke my heart to be so far from my mom. I still second guess myself so much that it's borderline regret. I wish I seized the moment when my mom asked me to take her to California and live near me. She was in rehab after a fall. We were walking outside, and in a moment of rare clarity, my mom turned to me and said, "Hey Jack, I want to live near you. I can move to California. I don't have to live with you; I just want to be near you." I wanted to scoop her up, pop her on a plane, and figure it out. But I paused and said, "OK, Mom, yeah, let's see what it would take to get you out there. I'd love to be near you too."

And that was the end of that conversation. Soon after, my mom fell at the rehab, returned to the hospital, and cognitively slipped away even more. I feared that if I drove her to California to be near me, I would pull her away from her community, and she would need familiar surroundings more than ever to recover. I wasn't wrong. But I also wasn't right. There wasn't really a correct answer. So she stayed in New Jersey. My sister was the frontlines daughter, checking on her often and being the first point of contact in emergencies and in-person advocate. I was the long-distance daughter taking care of the business side and raising hell from afar, flying back when possible or in emergencies, and trying to handle financial needs. It wasn't perfect, but my sister and I made it work.

You may not be there in person, but you can still show up for your loved one and family in many supportive ways.

Tip #1 - Be an Advocate

Yes, it is much easier to advocate when you are close by and can see everything and everyone with your eyes. However, you can still be a world away and be a voice for your loved one and your family members caring for your loved one.

My sister, Liz, was in New Jersey, about twenty minutes from my mom. I was in California, flying back whenever I could, but it got expensive and taxing on me physically after nine months of back and forth and sleepless nights while working a full-time job. My doctor told me I had to stop because my health was declining. So, I shifted gears.

Liz would see Mom a few times a week and often share with me if she thought things were fine or if there were issues. When my sister needed to get in and see Mom without having to talk to the higher-up staff, I would try to be the one who would make the complaints to the executive director. Liz could then focus on Mom, and focus on the admin side.

So, if you are further away, stay in touch with your family and caregivers as much as possible. Set a weekly reminder on your calendar if you have to. Even if it's just a text, email, or phone call to say, "Hi, checking in to see how this week is going. How is mom/dad/our sister/our brother/neighbor, and what help do you need going into next week? I'll help however I can."

Tip #2 - Use your FMLA (Family and Medical Leave Act)

If your place of employment provides FMLA, use it. Take time at the beginning of this journey to be with your loved one. Take the time to research in-home caregiving, assisted living, and memory care communities, and interview geriatric physicians and geriatric psychiatrists. Check out local hospitals where your loved one would go in an emergency. Find an elder care attorney. Meet with a financial planner. Use this time to get as much set up as you can. Be a part of your loved one's care right from the beginning because as soon as you start on this dementia journey, it will most likely be a rollercoaster of surprises. The more planning you can do now, the less scrambling you'll do when your LO falls and goes to the hospital, then you have three days to find a new rehab or forever home for them. There will still be curveballs thrown your way, no matter how muh planning you do, but you will save yourself some stress and heartache later if you do the make connections now.

Tip #3 - Hire an Elder Care Attorney

Proper legal documents are critical to ensuring you have access to your LOs' health records and, that you have direct access to their physicians, their financials, and that you can be their voice when they've lost theirs. While you can download many legal forms online, I encourage you to seek a reputable elder care attorney who is in the thick of this all the time and knows what you need. You won't be an expert in everything, and that is OK! We had a basic medical POA doc for our mom. It wasn't enough. The wording was insufficient to get us full access to her records and make the calls she needed. When we got an elder care attorney, those new documents were rock solid! Never again did a hospital or medical professional question our access and ability to speak for our mom. Also, if you want to move your LO into assisted living or memory care, you must sign a contract. Have the elder care attorney review and edit that contract, especially if your LO will need some form of Medicaid in the future. Don't do this part alone! Yes, it costs money and may save you money and your sanity down the line.

Tip #4 - Hire a Geriatric Care Manager

Especially if you are flying solo on this journey, you will need an expert to support you. Again, this is a horrific disease where everyone learns something new every day with every different person. So...tap into that knowledge from people who can take some of the emotional toll off your plate. So...tap into that knowledge from people who can take some of the emotional toll off your plate. Learn more about what geriatric care managers do and how you can find one here at the Elder Care Locator site. Do they cost money? Yes. Are they worth it? Think of the cost of the flight, eating out food, the hotel, days off from work you'd use. Now compare that to the cost of a geriatric care manager. Can definitely be worth it.

Tip #5 - Zoom or Facetime

Hurray for technology! It's great to speak with a loved one on the phone; it's even better when we can see each other's faces. Find a nurse or CNA at your LO's facility, or the caregiver at your LO's home, who will faithfully stay in touch with you video chat with you. Even if your LO can no longer speak, you can. Showing your face is showing up. Letting them hear your tone and words of love and stories, keeps the person connected, out of isolation, and reminds them they are loved. So connect as often as you can. Even if it's five minutes, say hi and tell them they are loved.

Tip #6 - Support Financially

Dementia care is expensive. Whether home care or memory care, it will tap you financially, mentally, emotionally, and physically. If you live far away and can contribute ANYTHING to the care, please do. My sister and I both gave our time, love, and voices to our mom. My sister gave so much of her time to be there in person. I used my savings and took out a loan to pay for the care. Both my sister and I spent money we never planned on spending. Would I do it again? Probably. Am I still recovering financially? Yes, we both are. So, some thoughts...

• If you can help pay for caregiving, do it. Whatever you can.

• Don't have a lot of money but want to help? If your family cares for your LO, ask when you can send them meals. Gift cards for food or grocery delivery are excellent. Let them order what they need and take a burden off them so they don't have to cook for a night.

• Offer a stipend. If you cannot swing thousands of dollars a month for care, but maybe you can do a few hundred a month, make that arrangmeent with family. Again, elder care attorneys can be helpful in figuring out if that money should go to a specific bank account for your LO's care.

Tip #7 - Be a Researcher

Is the caregiver running into a challenge? Do they need help brainstorming how to get mom in the shower? Does dad need a new geriatric neurologist? Are there more dignified clothes and briefs they could be using? These are all things that you, as the long-distance caregiver, can research for the on-site caregiver. They may need more time to sit down, uninterrupted, to look at reviews or make calls to physicians. Help them out here by saying, "You focus on mom, I'll look into x,y,z, and I'll send you some recommendations tomorrow. Thanks for loving on mom."

Tip #8 - Provide Respite

If and when you can, proactively offer respite for the person physically caregiving for your LO. Especially if you have siblings or a parent caring for your LO, make a plan for them to go on vacation, and you fly out to care for your LO. Give the caregiver respite whether it's a three-day weekend or a two-week visit. It will also refresh your understanding of what it's like to provide in-person care and you'll see how their needs are changing. Understandably, if you are stationed abroad, are ill, or have other duties, it is more challenging to do that. But if you can give respite, you should. This is when you need to physically show up for the on-site caregiver.

Tip #9 - Enlist friends and neighbors

People want to help, they just need clear direction and tasks. Ask who can visit your LO weekly and monthly. Make a schedule and put it on people's calendars. Send people some digestible bullet points about what to expect, how to be there for your LO, and anything you want them to look for. (Color change in skin, is LO in dirty or clean clothes, change in behavior etc.) Ask them to rally by making birthday and holiday cards for your LO. Let your community be an extension of you!

Tip #10 - Say THANK YOU!

Even if your LO's caregiver is exhausted, angry, and takes it out on you - say, "Thank you." They need love too. Especially if it's family. Send them flowers, coffee or food gift cards, a spa day if there's respite coverage...ask them what they need. Make sure their efforts are acknowledged. This is sometimes soul-breaking work. Yes, we provide care out of love and obligation but it is also work that often goes unpaid. So say thank you, and I love you for loving on our person.

Tip #11 - Join a Support Group

Check out Alzheimer's Association Support groups. There may be a group near you, and they also have virtual groups. It's hard being away from our loved ones. It's natural to feel guilt when you can't be there in person. Listen to, learn from, and connect with other caregivers. It will bring you closer to the person you are physically far from.

Long-distance caregiving is hard. It's sad. It's exhausting when your LO's well-being is always on your mind, but you can't just drive over and pop in to say hi and check on them. Do the best you can, show up when you can however you can, and always say I love you to both your loved one with dementia and especially the in-person caregiver.