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How did you get involved with the issue of promoting caregiving?
My involvement with baby boomers and caregiving definitely came about very organically. I got thrown into it like most Americans do. Most of us see the signs of our parents starting to not be able to take care of everything in their lives, but we turn a blind eye to it. I don't think we do it because we're irresponsible. We do it because it's kind of out of our own self-protection. We want to think of our parents as being the almighty strong ones that are always going to be there and the ones to go to for advice. It's a very awkward transition in a person's life. Every other transition is pretty comfortable. You move away from your house and go be a college student that feels comfortable. You kind of like that. You get married and learn to live with someone else. That seems natural but all of us that have gone through this transition know there's nothing natural about all of a suddenly having to become a parent for your parent.
Why is that important?
The more you can understand it and embrace it rather than kicking your head in the sand and fighting it, the better off you'll be. I'll be candid. I saw the signs. I saw them. I live on the East Coast and my mom and my brother who had a chronic illness, I had them living together on the West Coast. I would go in to visit and I saw the signs. My mom in her late 80s wasn't keeping her house the same and her clothes the same. I saw piles and piles and piles of signs, but you don't want to see that. Instead, you wait for that phone call.
What was that?
In my case, it was my brother passing away. You get on the plane and rush out there and find yourself mad at yourself because you say, why didn't I have a plan in place? I'm here to say don't let yourself get in that situation. You don't know what's coming tomorrow, but if you're in your 40s and you have parents in their 70s and you're not starting a conversation, you are behind the eight ball and you need to get with it.
What happened to your brother?
He died from the complications of Type-2 diabetes. He got it young in his late 20s and it ravages your blood vessels and he had difficulty walking, and he had a million operations on his hands and his feet. He was losing his sight. It was decline in his ability to medicate himself properly that probably took his life in the end. I was planning a funeral for my brother and all of a sudden I was in a position of planning a new life for my mom because she couldn't stay in that house alone.
Where were they?
I had lived on the East Coast for decades and my mom was living in California in Sacramento and loved it there. She had lots of friends still and had no desire to move east because she was a California sunshine girl. But she also didn't want to move out of the condo I had them in. Therein lies the next bump in this road. That is that it's very difficult to engage your parents in any kind of conversation that involves change -- that involves the possibility of them not staying in their own home.
We avoided it and put it off. We don't want to argue with them. And then we keep going back home and all of a sudden realize one day the food in the cabinet has expired and there is hardly any food in the refrigerator. They hardly have the will to get up and eat. They are either taking medications that might affect their taste, and they're not eating properly. They are not taking their medications when they should be taking them. They open the door to anybody.
What are the options?
If you have the finances to keep them in the home longer, God bless you. I tried that. You need to start having a conservation with them about not giving out their personal information on a phone call and not opening a door to a stranger. And frankly, it's best if you have siblings, it's best you go in during these holidays with an eye to assess. Don't go in turning a blind eye. If you can't do this, hire a visiting nurse to go in and make a senior assessment and determine whether your aging parent is taking their medication properly, can take care of their daily living chores.
What would you bring in someone?
It's hard to get siblings to agree, and it's a difficult road to navigate. Sometimes it's better to bring in an objective view to try to make that assessment. I work with A Place for Mom. I made all the mistakes. I put my mom in totally the wrong place the first time. It was gorgeous, but I didn't realize how much help she required on a daily basis because I wasn't living there. Quite frankly, I still thought of her as ten years younger. It only took a month or two to find out it was not working at all.
What did you do?
It was a senior facility, but it wasn't enough of a senior-assisted facility. I thought she could get herself up, get dressed and go down to lunch, play cards and chit chat with the girls and bring people up to her apartment. I was completely wrong. I think back about how did she take care of herself there in the condo? She went through such an emotional trauma with the death of my brother that a lot of times one parent will go through this terrible emotional trauma if the other parent dies. You have to be cognizant of how that impacts the other parent. It can sometimes send that dementia into overdrive. There's not a will to get up and make themselves dinner and live life.
When should children have that talk?
For a long time, there's been this 40-70 rule. If you're in your 40s and your parents are in their 70s, you better be on this. Frankly, people in their 30s, I highly recommend you get on this bandwagon because the earlier you start it, the more natural it will feel as life progresses. Waiting until a parent is so elderly, then they become defensive. Whereas if you speak to them about it when they're still engaged in life, it's all in the verbiage that you use. I think you say to your parents about what's on their bucket list and how do they see the coming chapters of their life. It's not the last chapter of your life or the end of your life. And how can I help you do that? Engage them in that conversation and it can be a natural conversation. You can ask them have you guys been putting away for this. I need to know because if I need to help you, I need to know too.
Why is this important?
The hard truth of this whole conversation is that if you don't engage your parents and your siblings in this conversation, it can take absolutely take you down financially and emotionally. We got a lot of Americans that are dipping into their own retirement savings today in order to pay for their parent's existence when in fact it will cost a lot more for these adult children to live their lives because they're going to be living longer. My mom never expected to live until 95 years so she didn't save for that. I remember one time I asked her if she had long-term health care and she said yes, yes, yes. She did for three years but that ran out years ago. Thank God I had the financial resources, but this is a huge issue for families across America. I personally think this is going to be the next major crisis in this country just because of the sheer volume of baby boomers. When you think by 2030, there will be more people over the age of 65 than there will be under 15. When you start getting a top-heavy population like that, are they going to remain working? Do people feel they can retire at 65 and feel they have saved enough to 95?
What about if you have them in your home?
What happens when you have them in your home, this usually falls on the shoulder of women. The average caregiver in America is a 49-year-old woman who still trying to raise her own kids and trying to get them through college. They are still working and now they are taking care of an aging parent. What happens is that it usually takes the women out of the workplace. It ends her ability to have a pension or retirement fund, and we have a lot of women ending up destitute in this country because it takes them down financially. It's for your parent's good, but I will be very candid, it's for your own good. You just have to find ways to engage them and it's not always easy to engage your parents, and it's not always easy to engage a sibling who would rather stick their head in the sand and not face reality.
What have you learned?
I talk to a lot of caregivers because I worked on a book called "Chicken Soup for the Soul: Family Caregivers." The ones that I found who were successful were the siblings that had remained in conversation themselves and had somewhat healthy relationships with the aged parents. I highly recommend you have this meeting with your siblings and do not have it with your parents. Nobody will be honest and talk freely and honestly.
What else should they do?
Have a realistic plan in place. Do we know where mom and dad's bank is? Do we know if they have a safety deposit box? Do we know who their insurance broker is? Do we know if they have an investment broker? Where the heck is the title to the car? These are the things I looked for when my brother passed away, and I had to touch every piece of paper in my mom's condo. She had mail she hadn't opened for a few years. I was looking everywhere for her wallet because there was no wallet in her purse. At one point I said to my mom, where is your driver's license? She says, honey, I don't drive anymore. OK. Then where is your Social Security card and where is your passport? She said honey you know I'm not taking trips anymore. Where is your Social Security card? She said I don't know. I turned to this woman I had coming in three to four times a week to take her to her doctor's appointment and buy medications and groceries and clean up. I turned around and asked her about picking up the medications all the time, what do you use when you go to the pharmacy? She looked at me and said your credit card. I learned the hard way. She was paying the full amount. My mom did not have a supplemental pharmaceutical plan. I look back on it, and how could I have not asked or known.
What did you do then?
I had to be like a private detective and started to talk to my mom and look at old pictures because my mom was in such a state of trauma because my brother had died. I went through pictures and found out the date of their marriage and I contacted Las Vegas where they got married and got a marriage certificate. I knew where she had been born and got a birth certificate. I had to have both to go to Social Security to get a card which I needed to go to Medicare to get a Medicare card. I literally was like a private detective trying to put back together her identity. As I made my way through this, at one point I just said it should not be this hard and it doesn't have to be this hard for people. I know I can have a platform to get the word out. I have to make sure I get this word out that you need to do all this when things are still stable and when you can ask questions and actually get an answer. Other people shouldn't have to go down this road I have gone down.
How has it gone since you lost your mom?
I gave a eulogy of my mom at her funeral that was a happy eulogy. Everyone called her Happy because she was a glass half-full person. She was my personal guru of positive thinking, and she was so appreciative and grateful of having lived this incredibly long life - way longer than she had planned on. She had a great marriage and kids to proud of. She chose to forget all of the bad times and be appreciative of the good times. While she had a lot of dementia going on, she was pretty healthy and did well up until the final few weeks where she had a stroke and came home with her heart working at 30 percent capacity. We knew to bring in hospice, and she was gone in two weeks.
Why was it like that for you?
It was something I couldn't be profoundly sad about because to me I knew she had lived a great life and was happy about the life she lived and she would not have wanted to have come home and survived that and live at a greatly diminished capacity. I still have questions now and then and think my God, my mom and my brother are both gone and I lost my father, a cancer surgeon when I was very young. He was in a plane crash. That was my family. I don't have any other siblings. My grandparents are gone. Any aunts or uncles aren't alive. You get that sense why didn't I ask that question.
What should people ask?
My advice to everyone as we approach the holiday season if you really want to get it right, get out your video camera and take it with you and engage your parents. You can start with your grandparents. Get into a conversation with your parents about their life as a child and what life was like. You will be blown away by what you hear. This will be the most valuable possession that you will own. Ask them what life was like when they met each other. Ask them what life was like when you were born. Ask them what you were like as a kid. It's kind of a natural progression to get them to the point of asking them if they thought this would be what they're life would be like today? And what is the next logical step? What do you want tomorrow to be like? Life is pretty different these days from the old days and what do you want the next chapters of your life to be and engage them in that conversation.
A lot of people regret not doing that?
I am here to say it out loud. Don't be one of the 'if only.' Engage them in conversation and get the pictures together. If you have an aging parent, make sure that you understand if they kind of lose grasp of the world today. They remember everything from 40 years ago, but they can't remember if they had lunch. Don't try to make them live in today. They don't have the ability to live in your life today. Talk to them about life 20, 30 and 40 years ago and then you will sit there and have a wonderful conversation and learn about them. The people taking care of them will learn more about your parent and they will be more engaged with that parent and have more of an idea how to engage them and what makes them happy and what they're background was like. That's the best thing you can do. And that lets them understand that you really love them and you really care how they feel every day. The more that you can infuse that into whatever the living situation is, the better the aged parent will be taken care of.
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