“Just Make Time For Yourself!”

This poster showed up on my Twitter feed last week. As well-meaning as it is, it immediately got my hackles up.

nia_tips-for-caregivers_infographicDon’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.

IMG_0573
(Totally irrelevant photo of my sister’s dog, Oakley, because he is adorable and his adorableness just makes things better.)

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.

A letter to my Mom

 

MyIMG_2329 mother, Muriel, passed away a month ago. She was 92 years old, but her death still came as a shock. I thought she would be here forever; my family always said that she would outlive us all. The reality that she is no longer here hasn’t sunk in yet. I suppose it takes time for something like this to reach the deepest part of you. I wrote her this letter and had it read at her memorial service. Many thanks to Cathy Taylor for doing my dirty work for me–I was a mess that day.

Mom, how do I sum up a lifetime with you? My mind is a swirling, colorful kaleidoscope of memories that won’t gel into any specific point. My earliest memory is you holding me up to the mirror after I fell down the stairs, to see my two big, black panda bear eyes. You took a scary, painful situation and made it funny.

Every day when we came home from school, you were waiting for us, and would make Jimmy Snider and me a glass of chocolate milk and listen to us talk about our day. You did “surgery” on my favorite teddy bear whenever parts of her would fall off. You showed me how to stand up to bullies in a way that was far more effective than Dad’s boxing lessons. You let me skip one school day a year, which would be “our” day to do something special together. You made me endure endless hours in the fabric store as you pored over patterns, but then you made me the prettiest clothes. You encouraged Dad and me to have father/daughter date nights, because you were making sure I had the kind of relationship with my dad that you never had with yours. You encouraged me to travel because you knew how much it meant to me. I never would have seen Europe or the Holy Land without you running interference with my overprotective dad. You told me once, “I would have loved to backpack across Europe when I was your age, but unfortunately there was a bit of a war going on at the time.”

Swirling, colorful memories, some painful but mostly good. Then Dad got sick and life got IMG_2266hard. I didn’t realize for the longest time that you were having problems by then, too. As his Alzheimer’s got worse, he became more paranoid and delusional. My worst memory is him screaming at you, calling you a dirty witch and worse and to get out of his house. You stood there, helpless, sobbing, “but I’m your wife! I’m your wife.” You never understood what was happening with him, you just saw the only man you ever loved rejecting you.

Those memories and ten million more we shared, until the Dementia came for you, too. I could only watch as, one by one, they all disappeared. Now it’s just me holding onto the memories you and I shared, until the day may come when the Dementia steals them away from me, too.

But, I think about where you are right now. They let me spend a few minutes with you after you died, to say goodbye. As I saw your bodyIMG_1726 lying there, I knew that you were already gone. YOU weren’t in that room. What happened then? Did you open your eyes to the most beautiful Light you’ve ever seen? Did the loveliest voice in all the universe welcome you home? Did He wipe away your every tear? And then, in that moment, did you finally understand what a Father’s love really is? I hope so. I believe so.

I miss you, Mom, and look forward to the day I see you again. We will look back over our lives, even the hard times, and have a good laugh, just like we did over my panda bear eyes.

I love you.

IMG_2330

 

 

 

In praise of CNAs

In praise of CNAs

Yesterday I ran into a neighbor who is studying to be a Certified Nursing Assistant (CNA). I asked if she knew which area she would like to pursue specifically. She said she’s been considering doing in-home health and asked if I thought that was a good idea. I told her YES! In-home health helped me survive the last few years that my mom was home. After we parted I started thinking about all the CNAs I have worked with over the years, and what separates the good from the bad.

First off, it has to be one of the most thankless jobs on the entire planet. Their reward for long hours of heavy lifting, dirty diapers, oozing wounds, and irritable, uncooperative, and even violent patients is usually a pittance of a wage with few (if any) benefits. Why on earth do they do it? I had a hard enough of a time just caring for my own mother without completely losing my mind, and I love her. I don’t know if I would be able to do it day in and day out for anyone else.

The good ones do it because they have a genuine heart for people in need. They provide love and acceptance in situations most people walk away from. They wash, dress, feed, and nurse people who can’t take care of themselves while treating them with dignity and kindness. They don’t lose their temper. They don’t argue with the sick; they listen and then gently guide. In short, they MAKE PEOPLE’S LIVES BETTER.

While my mom was at home, the only respite I got was about four hours a week when a CNA would come into the house so I could leave. With the worst ones, I’d come home to a house dirtier than when I left, and an irritable Mom who obviously had had a bad time even though she couldn’t tell me why. My mom’s beautiful 25th-anniversary ring was stolen by a home health worker because it never occurred to me I would need to lock up our valuables.

BUT: With the best ones—and there were more good than bad–I’d come home to a sparkling house and a mother who was clean, well-fed, and happy from having one-on-one attention (from someone besides me) for awhile. Now at Mom’s assisted living, the good ones are the ones who have time to give their patients a hug, or do a little project with them, or make the effort to engage them in conversation, which is what all of the residents like best. No matter how far gone they are, they all love to have one-on-one interaction with someone. And, most importantly, they appreciate people who treat them like rational grownups even if they act like they’re lost in the Twilight Zone.

So here’s to you, Penny, Meagan, Cathy, Bridget, Stephanie, Audra, Kim, Jared, and all the others who have made life a little better for my mother and people like her. You should be earning what movie stars make, and I trust that God will one day richly reward you for the important work that you do. You truly are heroes to all of us who have been lucky enough to know you and benefit from your skill and generosity of spirit. Three Cheers for CNAs!!!

 

“Introduction” (How’s that for a snazzy title?)

Hi. For many years I was primary caregiver to my parents, who both had dementia. When he was 81, my dad caught pneumonia, which turned into septicemia, which cooked his brains. He went literally overnight from being normal to having mid- to advanced-level dementia. It progressed from there like Alzheimer’s until he succumbed three years later. My mother has vascular dementia, which is brain damage caused by stroke. The two types of dementia progress differently, although the end result is the same.

My dad died nine years ago. Mom stayed with me until about two years ago, when the risk of her taking a bad fall was too great to keep her at home any longer. So, I was a part- to full-time caregiver for over ten years. It wasn’t planned; I never announced “I am going to take care of my parents!” or anything. It just happened. I wasn’t very good at it, and have battled long and hard with feelings of anger, sadness, isolation, and grief from watching any idea of a “normal” life go down the drain.

I always thought that once I didn’t have to care for them anymore, then real life could begin again. As though being a caregiver was an interruption to my life. But now I realize it WAS my life. Being a caregiver made me who I am today. It made me grow up—or, at least, start that process. I’ve had to face a lot of demons that most people (myself included) happily run away from their whole lives. Like facing the fact that I am not really such a “nice” person as I like to think I am. If there is any good in me at all today, it is the Holy Spirit at work in my life. God has given me a little bit more empathy, a little bit more kindness, for people than I had before.

The dementia journey is unique to every person who goes through it. Likewise, the caregiver’s journey is unique to every caregiver. If anyone reads this who is struggling with caregiving, I hope I can at least give you some comfort that you’re not alone and that someone else on this planet understands what you’re going through. I will post something about once a week. If anyone has any comments or suggestions I’m open to hear them. I’m also having a hard time figuring out how this site works, so please bear with me as I work out the kinks! Thanks, and God bless;

Kathe