My husband reminded me the other day that he wouldn’t necessarily consider himself a caregiver if  (or when) I were become ill. “I love you. I’d do what you need me to do.” That’s sweet, but I think of all the spouses out there who go the distance–and more–for their spouse. We will sacrifice, do without, and even go to the point to where we put our own health in jeopardy for our spouses.

According to the National Alliance for Caregiving, 52 million Americans are providing care for loved ones, and almost 22% of all caregivers who are age 65+ are caring for a spouse. About 62% of all primary caregivers are caring for a spouse.  

And if those spouses are like my husband and not really identifying themselves as a caregiver, that means they’re not reaching out, attending caregiver support groups, reading material, going online and educating themselves about the disease, or about the impact of caregiving on their lives, their relationships, and on their health.

It’s not that spousal caregivers aren’t amazing. They are, especially our guys. I speak to hundreds of caregivers a month and I find that our husbands and sons are thoughtful, considerate, and trying very hard to meet the needs of those they love. But I also find that like any caregiver they grapple with loneliness, isolation, exhaustion…and are plagued with worry and guilt that if something happens to them, they don’t know what will happen to their wives.

Alzheimer’s expounds the dilemma. We don’t want our children, our neighbors, our friends and business associates to “see” what’s happened to our mates. We want to keep their dignity in tact. We don’t want anyone to feel sorry for the strong, intelligent, capable person we know and love. So we hide. We make excuses. We avoid lunches and reunions. We suffer in silence.

As a society, we have to take away the stigma of caregiving and of Alzheimer’s. We, this first geneartion to be hit with these staggering numbers have to be williung to step up and speak out. We have to view it as a disease, that’s all. We can still celebrate the soul and spirit of loved ones. We can laugh with them, laugh at life and all it throws at us, and laugh about the disease–to take away the sting.

We must defy the urge to cower, or to go it alone. As humbling and vulnerable as Alzheimer’s can make us feel–as spouses or as persons with the disease–it also reminds us how very much we need our communities, our faith, our families, and our friends.

We’ve all heard the news stories–an elder man drives into a crowded restaurant, an elder woman hits a pedestrian. It’s scary to even think about. That’s why we caregivers and family members put it off. We know our elders will be defensive. We know they’ll say they’ve been driving for 50 years–that you’re just trying to shove them into an “old folk’s home.” So before you talk to your elder parent about driving, do your homework, and help to make this monumental life change as easy as possible.

3 Tips to Consider Before You Talk to Your Elder About Driving:

• Check into your parent’s state driving laws. Check their license to see when it expires. Many elders forget or avoid renewing their license. et them drive while you’re visitng. Be aware of their vision, reflexes, and memory issues. Go with them to renew their license. Let “the state” be the bad guy. If their eyesight is failing, they won’t qualify. Many states have elders perform a driving test, so check to see what the requirements are in your area. If they fail the test, remind them they can get an ID. It makes them feel official and is issued there, at the driver’s bureau.
• Talk with their doctors about your concerns. For example, my mother had Parkinson’s and I knew that she couldn’t turn the wheel quickly or slam on the brakes in the event of an emergency. I called and spoke to her neurologist before I took her to an appointment for her check-up. He broke the news to her–that based on his assessment, it was time to give up driving. He told her to blame it on the disease, get mad at the disease–not me, her daughter, and not herself for “failing,” or not him–for delivering the less than pleasant news. Because I was there, she couldn’t fib to me or forget to tell me. It opened the door for a heart to heart talk.
• Research driving alternatives before you have “the talk.” Taxis, senior vans, neighbors, church members, and other family members can all pitch in–so have the “team” in place. Be prepared for the myriad of emotions you–and your elder will feel. It felt like I was taking my mother’s license from her. I didn’t need to feel that way, her condition was, but I did feel that it was my responsibility to explore her options and arrange for alternative transportation. I called her church and arranged drivers for the activities she wanted to attend. They were glad to help out. I took on the weekly errands and doctor visits. I asked her close friends to be sure to invite her to lunch and other fun events often–and to be willing to pick her up. I checked with local resources for van transportation, but my mother refused to “get on the bus.” I wish I had insisted. The freedom she had, the less she would resent her situation.

You might have to be the bad guy in all this. If your elder gets mad at you–sees you as the reason they can’t drive–let them. I used to tell my teens that it was okay to blame their mean/strict mom for their curfew, or to get them out of a bad situation.

If your parent is really stubborn and will drive without a license and you feel that they’re a danger to themselves and others, then take the car. I know that sounds strong, but I know elders who call mechanics, get keys made and stubbornly drive when they’re clearly unable to manage–and their lives and the lives are others are in peril.

The driving talk is the first of many elder transitions. it can be stressful on everyone. Prepare for this big talk. Stay calm. Stick to what you know is right–safety first. Know up front that you’ll have to step up, find solutions, and that they probably won’t like it. Just keep reminding yourself that you’re doing this because you love them–because you care.

Staying in touch with Mom and Dad has never been easier. Long distance caregiving certainly has its worries and frustrations–but that gap can be bridged with technology. Cell phones, web cams, online searches for resources, home monitoring systems, online care management, and coordinating community resources can buy your parents years of aging in place and enjoying the comforts of their own home.

Five Technologies that Bridge the Long Distance Caregiving Gap:

• Easy to use cell phones: Check out Jitterbug, Clarity Life…many cell phone companies offer less complicated phones with big buttons and easy-to-see screens. There are quite a few personal alert systems for seniors, but remember that many illnesses can impair a person’s ability to remember to press the call button–a spike in blood sugars, stroke, or dementia/Alzheimer’s can impede your loved one’s ability to reach out for help. Some services also call your family members once or twice a day to assess how they’re doing.
• Web cams: There’s nothing like seeing that your parents are doing well. This may be more suited for seniors more than elders who are not computer proficient. You need a computer for this–and it may rely on your loved one’s ability to operate a computer, but you can set it up when you’re in town. Consider using Skype. It’s quite easy and it case save you a bundle on long-distance. Warning: the picture isn’t always clear and there’s some lag time, but it really does make you feel closer to see your loved one and talk to them at the same time.  There’s even a Center for Aging Service Technologies that keep abreast of how we can best care for our elders.
• Monistor care online: Geriatric care management companies can actually save you money! I know of too many families hopping planes at the last-minute and getting to their parents to find that it’s not an emergency. A geriatric care manager does just that–manages the situation for you. They can coördinate care, monitor the situation, and give you peace of mind. And…what’s great is that there are now online versions such as Carerunner.com where you and your siblings can log in and help manage your parent’s care with their team of professionals.  
• Home upgrades for aging safety: It might not be technology per se, but making sure your parent’s home is easy and safe to live in.  It’ll give you the peace of mind that they’re not going to fall down the stairs, or slip in the tub.
• Get yourself online caregiving education: This time the technology is for you! Caregiver resources, information, and support is as easy as a Google search. Visit Aging in Place for more ideas about how to help your parents continue to live at home, or go to the Alzheimer’s Association forum boards for emotional support and caregiver questions, or AARP’s extensive website for great aging info. The more you educate yourself, the easier caregiving gets.

One of the best things my mother ever did was to insist that I call her every day–and visit her once a week. The were ”the rules.” Now, I look back and realize that they were good rules. They kept us close, they kept my mother’s care consistent–and in time–she needed much more than a phone call. Caregiving usually builds–but that time your parent gets to live at home for just a little bit longer, is worth the effort.

When our children are born, we give them godparents–someone who will watch out for them if something (god forbid) happens to us. We plan ahead. We think about who is the best person or couple for this role. Who will be good to our children? Who will keep our spirits alive? Who will give them the very best care? We even  invite them to family events and to ceremonies where we honor their role. Too bad we don’t do that for our elder-parents. If something happens to you, who’s got your back? Caregivers forget this very important detail.

And yet most caregivers I know fear that if something would happen to them, who would care for those they love? They let this fear paralyze them. It seems like such a big, seemingly difficult problem to solve that we avoid it, put it off, and never mention it to a soul. But the fact is, when you are caring for someone who needs you and relies on you, part of your job is to make sure they’re cared for–whether you can be there–or not.

Many caregivers have their own health issues. They delay going to their doctors, forget to fill their meds, they eat to comfort themselves (oftentimes with the wrong foods) and experience dangerous levels of stress and sleep deprivation. So not only do we not have a backup plan, we play Russian roulette with our own lives.

I put myself in this category. I’m not sure I had a valid backup plan when I was caring for my mom who had Parkinson’s and Alzheimer’s. I was an only child. I had no siblings to step in the gap. If I were to die in a car crash, my mother’s care would most likely fall on my husband’s shoulders–along with raising our three kids. Not very nice of me, really, to not have a plan in place.

What plan? You ask. Who would willingly step into my shoes?

Good question. Perhaps it’s not as much a person to step in and be “you,” as much as it is a person who could make decisions–and find a place and the proper care your loved one needs. So instead of looking for a “mini-me,” look around in your life for someone wise and fair, a good planner, an organizer, a person who doesn’t get snagged by emotions or conflict.

You may turn to the professionals–a geriatric care manager or elder-law attorney. You may turn to a family member or clergy Write down–worst case scenario–who or what care facility would be the best fit. Is there a small care home nearby? It might not be exactly what you’d dream of, but I don’t think kicking the bucket is what you dreamed of either.

Take a look at your loved one’s insurance policies. Can you get supplemental care? Do you know how Medicare works? If not, attend a caregiving conference in your area and ask for help. Go online to Medicare.gov and get familiar with their offerings. It’s not as complicated as you might think. Ask a friend or family member who has already been down this road for some advice or assistance.

Yes, it’s scary, but not having a backup plan is even scarier. Take a deep breath and begin to form a simple plan. It doesn’t have to be elaborate or planned to the nth degree. Ask for help. It feels so good to know that someone’s got your back.