Joan is one of the 24 million Americans representing the Sandwich Generation – those caregivers sandwiched between caring for two generations: children and older parents. While Joan resides with her family on the East Coast – a brood that includes her three older daughters and her four younger children (two sets of twins) – she also cares long-distance for her 94-year-old mother, Gladyce, who lives in California. Joan talks about bridging the distance in caregiving, having the family conversation and learning to let go of the guilt of not being there every day.

Mediaplanet: Caregivers often face a range of emotional challenges including stress, depression, guilt and burn-out.  Did you feel any of these emotions and how did you cope?

Joan Lunden:  I never realized until I wrote the introduction for "Chicken Soup for the Soul – Family Caregivers" that I had been a caregiver for 30 years. I had been caring for my brother, who suffered from type 2 diabetes most of his adult life and I cared for my mom who had suffered a series of mini strokes and was starting to show signs of dementia. I helped both of them financially by purchasing a condo they could both live in and getting them in-home care and visiting frequently to check-in with them.

It was only after my brother passed away a few years ago, that I realized my mother’s dementia was worse than I knew. So often, long-distance caregivers don’t see the daily signs and everyone puts on a happy face when you get together. But the signs of my mother’s increasing cognitive issues were there and I now believe I was just in denial – which is a common theme for caregivers. We want our parents to be all right so we ignore the little signs that maybe they are not all right.

"It’s not what you want but what your parent wants and what is best for them.  What is best for my mom is to be where she is today. That is what gets me past the guilt – my mom is really happy in her new home."

I did and still do deal with guilt. I always believed the best caregivers were those daughters and sons who had their parent come live with them or at least near them. I learned a big lesson through the years and found that my mom had always lived in California, she loved the sunshine and she still had a group of friends from over 50 years there to visit her. If I moved my mom to the East Coast, she would lose all that. In addition, my business has me traveling a lot so I still would not be there for her every day. It was the administrator at the residential dementia care home where my mom now lives who helped me to see my mom is much happier in her current home and her dementia may mean she does not realize the timelapse between my visits. I actually do visit her quite often and probably see her almost as much as if I were living across town instead of across the country. I see on these visits my mom is happy and doing well and those are the two questions every caregiver should ask themselves – it’s not what you want but what your parent wants and what is best for them.  What is best for my mom is to be where she is today. That is what gets me past the guilt – my mom is really happy in her new home.

MP: Caregiving can create a lot of fear – fear of the unknown, fear of loss, etc.  What fears did you have while caring for your loved one?

JL: Fear is common with caregivers. You are fearful of having that tough conversation with your parent and the rest of the family, you are fearful of making bad choices for your parent if you have to and you are fearful of this unknown world of elder care that you are entering. The best advice I have for other caregivers is have the family conversation – don’t avoid it because it’s uncomfortable. It is so much better to get everything out in the open now when everyone can discuss it than to wait until there is a crisis. I found that I knew my mom had long-term-care insurance so I thought she was covered for life. I never looked at the policy or asked any questions. What I found is that her policy only covered up to three years of her care – I have been her caregiver for 10 years. The financial burden has fallen on me the last seven years and I am lucky enough to be able to support her but many families find these financial surprises in caring for an older parent a huge challenge and a real risk to their financial future.

I also was in fear, or maybe denial, that it would ever get to a point where I would need to step in to take charge for my mom. She had always been so capable and independent but dementia robs you of who you really are. When I needed to help with her bank account and other financial matters I could not find any paperwork – not her driver’s license, not her passport or Social Security card, I could not even find her Medicare card for her prescriptions. I asked the in-home care worker, “How are you able to get her prescription at the pharmacy without her Medicare card?” And she told me my credit card was on file at the pharmacy and they just refilled her medications automatically with a doctor’s prescription. I literally had to become a detective to put my mom’s identity back together and get the documentation so I could help her. I advise caregivers to learn from my story that you need to know where all the important documents are and what they are: does your parent have a living will or estate plan? A health care directive? A DNR if that is her wish? What does her insurance cover and more importantly, not cover? These are the questions and conversations that need to happen to avoid the crisis later on when everyone is in a panic.

MP: What resource(s) helped you the most during your caregiving journey?

JL: The two best resources I found were an elder law attorney and a senior home care advisor.  It was the elder law attorney that guided me on the documents I would need to help my mom and how to get those if I could not find them (which I could not – I touched 20,000 pieces of paper in her condo but never found the important documents I needed).  The senior home care advisor I found through A Place for Mom. The social worker at the hospital where my mom was treated recommended them and they were so helpful to me in understanding the type of place where my mom would receive the best care. I tried everything before I contacted them – keeping mom at home in her condo with in-home care, moving her to a beautiful, fancy assisted living facility which she did not like, and finally letting the senior home care advisor guides us to a residential care home where they specialize in dementia and my mom has found her happiness. I was worried about their ability to care for my mom properly in this “home” but in actuality, she received more personalized attention, she loves the other residents and she feels she is in her “home” instead of a larger facility which made her paranoid and afraid – common symptoms of her dementia. (Joan became a spokesperson for A Place for Mom after her positive experience working with them).

MP: What do you wish you had known that blindsided your or caused you frustration, etc. while caring for your loved one?

JL: I think one of the biggest mistakes many caregivers make is wanting their parent to be like they always were – vital, healthy, independent – and your parent wants that too. Nobody wants to admit that age has to alter how you do some things. The problem is that as our parents age they need more help and that makes our parent feel vulnerable.  They can become feisty and resistant to help because they feel weak. For adult children, they can become angry, impatient and stressed – we just want to solve the problem and we may not be listening or paying attention to our parent and their new needs. We have to recognize things change and we all have to work together to adapt to the change.

The other problem I see for caregivers is they may find a wonderful facility or retirement home for their parent but once they drop them off, they drop out of the picture. Just because your mom may have health care professionals watching over her does not mean you are no longer her advocate. She still needs you to check in on her and visit. I have stayed very connected to the administrators and care professionals who watch over my mom. I remind them of special things my mom likes or special occasions for her, I ask A LOT of questions of the staff every time I visit. And, I visit as frequently as I can so that my mom has a sense of normalcy – to her it is like it has always been my whole adult life where we enjoy seeing each other every few weeks.

MP: If there is one piece of advice you would pass along to future caregivers what would it be?

JL: The best advice I have is to start the family conversation about caregiving early.  Use a video camera to ask your parents about their childhood – document their history – this is a tremendous gift for them and you. Ask them about family health history, ask them where and when they were married, what their parents’ names and birthplaces were. Ask them what they want the rest of their life to be like. This becomes a family bonding time to not only learn more about your parents which is important to them but also it can become a way to learn more about the important things you will need to know later on to be the best caregiver you can be.