The following essay is an excerpt from the book “My Two Elaines: Learning, Coping and Surviving as an Alzheimer’s Caregiver” written by former Wisconsin Gov. Martin J. Schreiber.
BY MARTIN J. SCHREIBER
With Alzheimer’s caregiving, there’s no point in bucking and jumping whenever you find yourself in a difficult situation. That only creates more havoc. You need to be smart. How did I get into this predicament and how am I going to untangle myself safely? The answer is it didn’t happen overnight, and you’re going to need a lot of help.
What follows applies also to wives taking care of their husbands, but the shift in roles is often more challenging for men who become caregivers. This is because men have to learn so many new skills and travel through unfamiliar territory as they climb the Alzheimer’s mountain. So I will speak very bluntly to you husbands. You and your wife have always been a team, building each other’s careers and sharing in the work of raising a family. Now, the balance will shift little by little until you’ll be taking care of her a lot more than she takes care of you. You’ll do all the driving. You’ll go to all her doctors’ appointments and manage her medications. You’ll take over the housework, shopping, and cooking. You’ll choose her clothing and help her get dressed. You’ll help her safely take a shower and, eventually, even help her use the toilet.
You’ll do all that – and much more – with a broken heart. I know that your natural instinct is to try carrying this weight alone. Being a real man means being brave, suffering in silence, and standing on your own two feet. Right? You’re not supposed to depend on others, are you? There’s a lot of truth in the old stereotype that male drivers don’t like to stop and ask for directions. But to be a good caregiver, asking for help is exactly what you have to do. That’s how you show how strong you are.
Before Alzheimer’s, I’d spent a lifetime in politics and business delegating responsibility to my staff and employees. Somehow, dealing with this disease was different. For many months, I wasn’t very public about Elaine’s diagnosis and how I was impacted. I guess I didn’t want to unload on people beyond the circle of our closest friends. Stubborn, stupid Marty!
There’s no shame in your spouse having Alzheimer’s, and there’s no shame in your asking for help. The sooner I had spent time in a support group, the sooner I’d have known that. When I finally did reach out to the Alzheimer’s Association, about four years into my climb up the caregiving mountain, I began meeting with a counselor at my local chapter’s office. She put me in contact with others caregivers who I found easy to talk to one on one. Collectively, they helped me understand that you can’t go it alone.
Did you catch that? It took me FOUR YEARS to begin working with the Alzheimer’s Association to get the help I needed. During those four years, I had health problems that possibly could have been avoided. I don’t want you to wait anywhere near that long to take advantage of the association’s support.
I know I am repeating myself, but I feel I have to do that because my message is so important: get help. Take out your phone right now, and put the Alzheimer’s Association Helpline number (1-800-272-3900) into your contacts list. Remember: it’s a free 24/7 resource that offers information about the disease, treatment options, caregiver skills, and much more.
What I wish I’d known: Asking others to help does not mean you’re not strong enough or not trying hard enough.
When it comes to having someone to turn to, let’s face it, most men don’t have as many close friends as women do. But whether man or woman, if you are the primary caregiver, take a minute right now, and name three people outside your family whom you confide in. This isn’t like Facebook where you might have hundreds of “friends.” I’m talking about the true-blue friends who will listen long enough to know what it’s really like to be married to someone who has Alzheimer’s. Even if your list is three people – or especially if you can’t come up with that many – you need to reach out to the Alzheimer’s Association. They’ll help you.
One thing that makes it hard to ask friends for help is that Alzheimer’s makes most people uncomfortable. Few people understand what it’s about, other than to know it’s not good. In fairness to my friends, they, too, are grieving the loss of the First Elaine. For the longest time I was satisfied just to have a friend ask, “What can I do?” The offer itself was comforting. You might even say it’s like having a million dollars in the bank. But that million-dollar account doesn’t mean anything if you don’t spend fifty bucks now and then.
It seems obvious, but every hour not spent on errands or chores is time you have for other things – whether it’s something your wife needs or taking better care of yourself. What’s on your to-do list? Could someone else buy a few groceries this week? Drop off dry-cleaning? Return library books? Walk the dog? Run your car through the car wash? Or bring you a tuna casserole?
With a better comprehension of how Alzheimer’s was affecting Elaine, I would have had to know what kind of help to ask for. For example, when Elaine was in the early stages of the disease, I could have requested that a friend take her for a walk or out for coffee. She usually did better in one-on-one situations where little was expected of her. I enjoyed those times, and bet her friends would have, too.
What I wish I’d done: I should have enlisted a couple of friends to be my team captains who could do the asking and scheduling for me.
And, I could have had some respite time when our children visited from out of town. They certainly were willing to help. But I still considered their visits to be occasions to entertain them and take care of them as Elaine and I had done for the previous twenty years. What I really needed, however, was to rest. It wasn’t until I was so physically worn out that I finally allowed myself the luxury to sleep in or grab a nap while they were here to help Elaine. I shouldn’t have pretended for so long that I was doing fine.
There are lots of ways to recruit and organize your helpers. You can set up a personalized schedule online, using the Care Team Calendar on the Alzheimer’s Association website (find it on the Caregiving Center page). On the calendar, you list what kind of help you need and when, and friends can sign up to volunteer. You can find websites with similar tools on the Internet including Lotsa Helping Hands, CareCalendar and CaringBridge.
Be sure you have current email addresses and phone numbers for people who might be able to help. Sent out a group message (“Dear friends, please excuse my manners in not asking you face to face, but I am having a difficult time managing all the things I need to do …”). If technology isn’t your thing, see if a friend will organize a phone tree or mail out a letter to some of your friends. As the word gets around, I know you will get offers of help.
For the first four years – four long years – as I hiked the Alzheimer’s trail, I stuck to my crazy notion that I didn’t need anyone’s map or suggestions. I believed that as long as I loved Elaine (and I’d had a half-century of practice at that already), I could handle the rest. Thank heaven I finally realized how wrong I had been. Look at what my attitude cost me – aggravation, good health, lost moments of joy with Elaine, and a friend or two along the way. Caregiver burnout and loneliness feed on each other. Admit you need help. Then get it.
“Everyone but [Marty] tells me how well I’m doing and [I] always hear I should continue doing everything I have been – as most of my friends tell me I am doing well and if they didn’t know I had Alzheimer’s they wouldn’t know. I too feel that I am as normal as most people in their seventies.”
— Elaine’s notes during a visit to Door County, Wisconsin, dated July 3, 2012
Copyright 2018 Martin J. Schreiber, My Two Elaines.
ABOUT THE AUTHOR:
Former Wisconsin Gov. Martin J. Schreiber is an award-winning crusader for Alzheimer’s caregivers and persons with dementia. Reaching audiences nationwide at live events and through various forms of media, Schreiber incorporates humor and compassion as he shares lessons from his decade-plus journey as a caregiver.
Net proceeds from his acclaimed book, My Two Elaines: Learning, Coping, and Surviving as an Alzheimer’s Caregiver, are used to promote Alzheimer’s caregiver support.
Prior to writing My Two Elaines – and while still caring for his wife at home – Schreiber collaborated with Wisconsin state government and various business groups to help create the online Dementia-Friendly Employers Toolkit. Since its launch in 2015, the toolkit has become an important resource for human resources and employee assistance programs.
Schreiber further committed significant resources, both financial and personal, to help the Alzheimer’s Association launch Operation: Stronger Together in 2015. This awareness program has helped the Southeastern Wisconsin Chapter connect record numbers of families to education and resources that are vital to successful caregiving. This and other initiatives have led to Schreiber being recognized with awards from the Alzheimer’s Association and other organizations.
Schreiber’s work on behalf of seniors goes back decades to his 16 years in public service as a state senator, lieutenant governor and governor when he focused on elder concerns, nursing home care, and development of the in-home Community Care Organization. Moving into the private sector, Schreiber became a successful insurance executive and publisher before starting his own government relations firm, Martin Schreiber & Associates Inc., (now Schreiber Government Relations Group) in 1988.
Schreiber attended Valparaiso University and the University of Wisconsin – Milwaukee and earned a doctorate of law from Marquette University. He and his wife Elaine are the parents of four children, Kathryn Lyon, Martin Schreiber, Kristine Haas and Matt Schreiber. They have thirteen grandchildren and five great-grandchildren. This is the first book by Schreiber, who lives in Milwaukee.