This poster showed up on my Twitter feed last week. As well-meaning as it is, it immediately got my hackles up.
Don’t get me wrong; this is great advice from the National Institute on Aging. They are right that caregiving is so much easier to bear if you have help, spend time with friends, have a support group, and take time for yourself and your hobbies. The only thing they fail to mention is that, for many of us, none of those things are even an option.
To be a long-term caregiver is to be perpetually exhausted, both mentally and physically. For many people, such as myself, caregiving makes you basically a shut-in. You can’t get out. You get to the point where you can’t think straight, it is hard to make even small decisions, and you don’t have the energy to look for help when you need it the most. That’s when you see something like this poster and your eyes suddenly blaze red.
How exactly are you supposed to take care of yourself? Don’t they know how impossible it is to follow any of these tips when your hands are full 24 hours a day? In case you don’t know, this is a typical day in the life of a Dementia caregiver:
- Wake up at 6 AM, completely unrested because Mom was up five times during the night demanding to be taken home, or to the “other place,” or to the police station to turn herself in (this really happened).
- Mom decides she needs to put on three bras and you try to calmly get her to wear only one. After half an hour you give up and she wears three bras.
- Breakfast is fine, until she tries to feed it all to the animals.
- 10 minutes after breakfast is over she angrily demands to know where her breakfast is and do you want her to starve?
- You have another go-round for thirty minutes when she decides to brush her teeth with a tube of Neosporin. You realize just how strong people in their 80s can be as you try to wrestle the Neosporin out of her grip.
- She calms down for few minutes over a cup of tea, then messes herself and you have to strip her down, get her into the shower and put clean clothes on her. This takes about two hours.
- You have a couple hours of relative peace to try to clean the house and prep dinner, but then she goes all Mom on you and starts badgering you to “take it easy! I’ll do that!” which sounds nice but she doesn’t let up and your blood pressure escalates into the danger zone.
- At 3 PM the sundowner’s sets in and she starts her loop of the day. Could be anything; with my mom it was “Where is Jim? When is Jim coming home? Where is Jim? Is Jim home yet? I need to go find Jim. Where is Jim?” This goes on and on for hours, sometimes into the wee hours of the morning. It is as unendurable as Chinese water torture. Then, somehow, you might both bag a couple hours of sleep before she’s up again, demanding to be taken home.
This, and many, many other things besides, make up the average day in the life of an Alzheimer’s (or other dementia) caregiver. Sometimes they have a good day, but as the disease progresses the good days get fewer and further between, until what you call a “good” day is what you would have called a “bad” day a year ago. So again I ask, how do you take care of yourself?
In my experience, the longer time went on, the more isolated I felt. I was luckier than many people; I have family that spelled me off so I could take one vacation a year and have little breaks now and then. But they were busy with their own lives and they all live far away. That’s a big problem – even the most loving friends and family just can’t be there for you as often as you might want them to be. People have to earn a living and raise their own families and deal with their own problems, which are undoubtedly as insurmountable to them as yours are to you.
Getting out to a support group wasn’t feasible for me, so I spent a lot of time in online groups and forums. They do help a lot. You can vent to other people who know exactly what you’re going through, and hearing their stories makes you realize you’re really not alone. The problem with those, for me, was that so many other people were relentlessly negative. I understand they were as exhausted as me, but hearing people say over and over “I’m stuck here,” “I can’t get out,” “I hate my mom,” etc., didn’t make me feel better. If I read stuff like that on a bad day it could quickly set my mind on a dangerous downward trajectory.
What saved me was – as he always does – Jesus. OH NO SHE’S GETTING ALL RELIGIOUS, UGH! I understand if you feel that way, but no. I’m not “religious,” I am a Christian. Being a Christian is a relationship, not following some set of rules hoping to get some kind of result. “There is a friend who is closer than a brother” – Proverbs 18:24. Who else is there to turn to, in the end? Really, think about it. My friends and family could only tolerate hearing my Mom woes for so long. Getting to support groups wasn’t an option. But the Lord is with us, ALL THE TIME, even when we’re not aware of his presence. I knew that, and it is him I poured my heart out to. He never said, “you’ve already told me this a thousand times,” or tried to get rid of me with a useless platitude like “you need to take care of yourself.” He knew I couldn’t take care of myself, and so He took care of me. He listened all those nights I sobbed about how exhausted and lonely I was, about how Mom was driving me crazy and I couldn’t endure one more day. Looking back, I can see his love and compassion for me, how he gave me strength, how he gently chided me and turned my thoughts around when I got too far down the self-pity path, how I never really felt as isolated as so many people do. In his amazing way, he used family and other resources to provide the help that both Mom and I needed. “He restoreth my soul” – Psalm 23:3. By ourselves, none of us are big enough to tackle life’s toughest battles. But we have someone on our side who is big enough to fight those battles. And He does.
If you’re new on your caregiving journey, I would strongly advise you to put resources in place BEFORE you get to the really hard times. There are places to go where you can get respite help, sometimes even for free. I think most parts of the country have an Area Agency on Aging or similar service – you can find links to your area on the National Institute on Aging’s website: https://www.nia.nih.gov/health/alzheimers/caregiving. They also offer some good tips for caregivers which are perhaps best taken to heart BEFORE you reach burnout stage like I did. It may still not be as much of a break as you would like, but it can be enough to keep you going one more day. Most of all, pray. Get to know the Lord, discover what a relationship with Him is really all about. Give him every step of your caregiving journey and all of yourself, the good and the bad. Your life is already never going to be the same again, but He can make it not the same in a different and better way than you could possibly imagine.
From Psalm 28:
To you I call, O LORD my Rock; do not turn a deaf ear to me.
For if you remain silent, I will be like those who have gone down to the pit.
Hear my cry for mercy as I call to you for help,
As I lift up my hands toward your most Holy Place.
…Praise be to the LORD, for he has heard my cry for mercy.
The LORD is my strength and my shield;
My heart trusts in him, and I am helped.
My heart leaps for joy
And I will give thanks to him in song.