When Things Get Tough

Do you ever have times when it all goes wrong? We recently experienced that. We are in our motorhome for the summer. I often do my best writing right after I get up, sitting there in my office space before it must become our dinette for breakfast.

One morning, I needed to do some internet research, but my browser wouldn’t open. I tried a different browser. It wouldn’t work either. Jim and I have always considered ourselves pretty computer-savvy, but nothing either of us could do made a difference. (It was a virus—several actually, we found out later.)

Oh, well, it was time to eat anyway. Maybe some time away would make a difference. (The difference is usually in my ability to think through a solution, not in the problem itself.) I set my computer aside and turned my workplace into a dinette by setting the table. It was Jim's day to make omelets and so I looked forward to a delicious breakfast. But when he turned on the gas burner, it wouldn't light—we’d neglected to fill the propane tank during our last move and now it was empty.

Well, that wasn’t all bad—we had an excuse to go out for breakfast. Then, when time away didn't improve our ability to fix my computer, we finally admitted we needed help and took my balky computer in for repairs. That wasn’t all bad either. I ended up getting a whole year of service for the cost of that one visit. Now I will be able to use their superior knowledge to keep my computer in much better shape with occasional preventive visits.

Caregiving can sometimes be like that. Sometimes, you can use a negative to gain a break, or a treat as we did. Sometimes, when you finally go for help, you find there’s more there for you than you thought. Of course, our problems are mild compared to many caregiver dilemmas. How do you find a positive in cleaning up one more mess or one more wet or worse bed, lifting a heavy, unable to help body when your muscles already scream or explaining for enth time why your loved one must, or can’t, do something?

A lot of it has to do with one’s frame of mind:

Live one day at a time. Do what you have to today and keep in the back of your mind that tomorrow’s bound to be better, with the load lighter and the day a little brighter.

Appreciate feeling needed. Giving has a way of giving back. Without you, your loved one’s life would not be nearly as good. Savor that knowledge that what you are doing is useful and helpful. You are making a difference.

Avoid being perfect. Divide your work into the “must do’s and the “should do’s.” Let the “should do’s” go until you feel better able to cope. The world won’t stop if you leave the dishes undone.

But there are also some small things you can do:

Take some deep breaths. Deep breathing does two things: it gives us a little time away from our problems and b) it adds oxygen, which helps rebuild stress-depleted resources. You will think more clearly and feel better able to deal with the situation after only a few breaths. However, be careful not to hyperventilate—breath out as much as you breath in.

Go on a mini-vacation--give yourself a change to regroup. I went out for breakfast. You may not be able to do that, but you can take a  five minute break. Go into the bathroom and lock the door if you have to. While you practice some deep breathing, close your eyes and imagine yourself someplace pleasant, a warm beach perhaps, or maybe just resting under a tree. You really will feel more positive and more able to face your world when you return from your virtual vacation.

Laugh--see the silly side of life. When nothing else works, laugh. It is amazing how just laughing at a serious problem makes it seem less burdensome.

And finally, the big one: Ask for help. You really don’t have to do this all alone! Like us with my computer, many caregivers feel they should be able to do it all without help, especially unscheduled help. But, the worst that can happen when you ask is that the person will tell you “no.” See previous blogs or read our books for ideas about when, who and where to ask for help.

The bonus is that as I did, you may find that when you ask for help, the help keeps on coming in some form. Perhaps your helper will volunteer to come over one day a week. Perhaps, you finally gave in and took your loved one to the doctor for a bothersome but not, you thought, urgent issue and a change of medication also helped with something else.

This isn’t about long term problems—just those days, or even several days at a time, when everything seems to tank. When the challenges last day after day, and you seldom get a chance to come up for air, the suggestions here are only stop-gaps. If that’s what is happening, caregiving has stopped being a one-person job and you really need more help on a regular basis. That may be someone to come in several times a week or it may be moving your loved one into a residential facility—or somewhere in between. See previous blogs and our books about this too.

Learn more about asking for help from
A Caregiver's Guide to Lewy Body Dementia
Managing the Cognitive Issues in Parkinson's and Other Lewy Body Disorders
LBDtools.com

Asking for Help

This last week, we’ve been stressed. My exchange student “granddaughter” gave birth to a beautiful baby boy. It wasn’t easy---50+ hours of labor at home, and 10 more in the hospital finally followed by a C-section. As we struggled through all of the twists and turns thrown at us by this delivery, I thought of the many caregivers out there struggling with Lewy which continually throws you twists and turns, gives you trials you are sure you can't handle—but you do. But eventually, it may come to the place where you need to ask for help.

Ursula so wanted to have a home delivery. She prepared for it for months. But eventually, she had to stop and accept more help. She had to go to the hospital and finally, after a spinal block, she relaxed and went to sleep. “I should have come here sooner, but I felt so guilty—like I was failing.” she said. Later, when they brought the baby to her, even though, she’d gone though surgery, she was rested. She could focus on this new being. She could BE THERE for her little son.

How many caregivers have said “I should  have done this sooner” after they finally put their loved one in residential care?” One caregiver told me, “If I’d only known how much I needed help, or what a better caregiver I’d be when I could be rested and able to really be there for my loved one, I wouldn’t have waited so long.” But, like Ursula, she felt she was failing to even consider it.  Of course, once she’d made the move, she found she was still her loved one’s caregiver. They’d simply moved to a different venue. Now, with someone else responsible for all the physical care, she had the energy to pay more attention to her loved one’s emotional needs. “Of course, he’d rather be home," she said. "But he’s really doing better here and a lot of it is because I’m not so worn out.”

We all want to be the best mom, wife, daughter, husband, caregiver, etc. that we can be. And sometimes,  like Ursula, we don’t realize that we need to ask for more help until we are well past when we really needed to do so. We don’t realize how tired, cranky, frustrated, and even scared we are, until we finally do ask for help. Then we look back with 20/20 hindsight and say, “I should have done that sooner.” There’s no sense feeling bad about that either. Just share your insight with someone else and hope they can use your experience.