The Zen of Caregiving

Moods of a Caregiver

I've noticed that the quality of my caregiving depends all too much on my own moods.  When I am feeling relaxed and OK with my world, I can be a patient, loving caregiver.  But when I am stressed or depressed, I tend to take it out on Adrian. 

The other night, just as I was trying to get to sleep, he complained about the bed (which is not even a year old):  "The mattress needs to be turned," he said.

"Not this kind of mattress.  But I rotate it every couple of weeks."

"I keep falling into an indentation in the middle of my side," he insisted.

Now, this wasn't the first time he had complained about the bed just as I was trying to fall asleep.  "Go sleep in the guest room then," I snapped.  "But don't talk to me about it now."

Timing is everything.  The next morning, I rotated the bed and washed the sheets.  I also showed him that this kind of mattress cannot be flipped over. 

Did we sleep any better the next night?  No, but at least he didn't complain about the bed.

Holidays and Caregiving

Sometimes the holidays make caregiving easier:  other relatives are around to help out; there is more activity going on to entertain the person you're caring for; and you take time out from work to relax.  I remember having family visit for my father's 94th birthday, and how much he enjoyed it. Normally he would only last a few hours, but he was alert all day, and especially enjoyed the poker game even though he lost. 

Other times, hosting at the holidays means more work, more stress, and less time and patience for the caregiver.  I'm afraid this year Adrian did not enjoy our Hanukkah celebration.  He hid out in his office much of the time, and was very quiet during the meal.  We had three children and seven adults, and continuous activity with Dance-Dance going on in the living room, ping-pong and darts in the basement, and food prep in the kitchen. 

When we have guests, I tend to focus on the guests, not on Adrian.  In fact, I often resent the fact that he is not helping me entertain.  And when my grandkids are here, I focus on them.  

My father always enjoyed having a lot of family around, playing cards and games.  We are a game-playing family.  But I'm afraid Adrian simply suffered the loss of my normal attention. When we finally went to bed last night, he said he was unhappy.  And I felt guilty.

My caregiving life gets busy again

Adrian came back from California late Wednesday night, and my caregiving life got busy again. 

I was glad to see him even though he kept me up late making a meal for him, and then not sleeping well (he was restless and on California time).  But last night he really gave me a scare.

We were watching a 30 Rock dvd when Adrian said, "I don't feel well."  I helped him stand up, and he gripped my arm to walk down the hall to the bedroom.

"I'm nauseous and seeing double," he said.  "Maybe I ate too much."

He had just eaten an apple after a big meal, but still, I worried that he might be having a stroke or the flu.  I got him settled into bed so he could rest, since that's what he wanted to do.

When I went back a half hour later, he said, "I see two of you, but that's nothing compared to the other things I'm seeing."

Now I was really worried, but I offered to make him some tea, and he managed to walk back to the kitchen.  It was then that I noticed a bottle of cough medicine Adrian had brought out earlier for me, since I still have my cough and cold.  I had declined taking any, but the bottle was still where he'd left it.

"Did you take any of this?" I asked.

"Yeah, I guess I did.  I'm not too clear right now."

I opened the bottle, which had been brand new, and saw that he had drunk almost the whole thing.

"That's why you sound and act stoned!" I said, throwing out the remainder of the syrup.

Later I gave him a lecture about taking as few medications as necessary, not drinking them down like soda.  His aging body had a very strong reaction to what was probably a mild over-the-counter cough syrup.  

"You don't have to lecture me," he said.  "I'm not that bad.  I was just nervous."

Well, that's reassuring!

Worry and anxiety take their toll on caregivers

Caregivers have enough to deal with without suffering from anxiety attacks, but we can't always prevent them. What I hate the most about anxiety is that it usually attacks in the middle of the night. I will find myself lying awake worrying about everything:

• I'm worried I have tuberculosis or pneumonia because I can't get rid of this cough.
• I'm worried about Adrian's trip to California.
• I'm worried that I have a horrible medical problem because of a mild pain in my side.
• I'm worried that I might not be getting all my email properly.
• I'm worried about things I can't even think of that might be wrong.

Anxiety in the middle of the night doesn't pay any attention to rationality.  It just keeps you awake.  For caregivers, not getting a good night's sleep adds even more stress to an already stressful role.  That's why, when I have a difficult day ahead and know I might be anxious, I take a mild sleeping pill.  A pill is not something I want to rely on every night, but used occasionally, it provides a sweet relief.

When the caregiver gets sick

As caregivers, we are not supposed to get sick, yet we do.  On Friday morning I woke to a foot of snow and went out after breakfast to shovel our walkway.  After that, I ran to the supermarket, and while standing in line passively waiting while the checker tried to swipe an item five times, then unsuccessfully attempted to enter the item manually, then left to pick up another package she figured would scan properly, and then having no success with that, I suddenly realized I was acting like a zombie because I was sick.

I had to cancel a cross-country ski date and dinner with my sister Laura, a Saturday outing with my daughter Blixy and grandkids, and call the doc for some antibiotics.  Adrian is visiting his son in California this week--giving me a week without any caregiving duties. What a waste to spend it in bed!

On the other hand, at least I can spend it resting and sleeping without anyone needing anything from me.  When I talked to Adrian on the phone yesterday, he said, "Get better by the time I get home so you can cater to me."

We both laughed and then he said, "Why are you laughing?"

How much help is too much help?

As caregivers, we want to be as helpful as possible, but it's important to help only when it is really needed. Otherwise our charges may become overly dependent on us, and lose the ability to do things they really could do for themselves.

My husband, Adrian, has complained at times about me grabbing things out of his hands because I didn't have the patience to watch him struggle with a task.  Whether he's opening a jar or trying to zip up his jacket, I always have the urge to grab and complete the job myself. 

I've been trying to train myself to patiently say, "Would you like me to help you with that?" rather than grabbing, but it isn't easy! 

Adrian called me last night from California, where he's visiting a son.  He said he wanted help making a call to his friend there in order to arrange a meeting, but that his son wouldn't make the phone call.  His son was trying to help him maintain his independence by encouraging Adrian to call his friend himself. 

But this was a case when it was more important to be helpful than to encourage independence.  Adrian often panics when he has to use the phone because he is afraid he won't be able to remember what he was going to say. 

It's not easy figuring out when to help and when not to. Often it's best to take a cue from the person we're caring for. 

Taking care of yourself when taking care of others

When you're a caregiver, you need to take care of yourself, too.  Here is a posting on the topic by Kelly Kilpatrick:

Taking Care of Yourself When Taking Care of Others

Being a primary caregiver can be a daunting task indeed.  From keeping track of medications, to the day-to-day cleaning, cooking, and tending to personal needs, things can begin to weigh on a person.  Though what you are doing is the right thing to do, sometimes you must take a bit of time to take care of yourself as well.  What follows is a brief list of some things you can do to make sure you are taken care of as well.

Stay Positive

This isn’t always as easy as it sounds, but know that you are doing a good thing and that this is the right thing for you to be doing.  Try to find the positive in everything you do, from preparing meals, to daily cleaning.  A good, positive attitude will go a long way in making sure that you don’t let things get you down.

Call for Backup

From time to time, it’s necessary to call for assistance when you are the primary caregiver.  This backup can be another member of your family or a nurse from a home health agency.  You can’t always do everything, so don’t try.  Make sure that you have someone that can come and take over for you for a bit so that you can get some time away and tend to other aspects of your life as well.

Take Time for Yourself

Steal away some time for yourself as often as you can.  During this time, pursue a hobby or get out and do something fun.  Even reading a book or getting online to entertain yourself is something that you can do to decompress.  Art, music, and writing are other great ways for you to spend some “you time.”  Get together with friends or family and have a night out – or a night in to converse and enjoy each other’s company.

Find a Support Group

Getting together with others who are in the same situation is a great way to work through any mixed feeling you may have.  Social support groups offer an environment for you and others to discuss and learn from one another.  If there isn’t one in your area, try forming one.  You’ll be surprised at how many people share your feelings.  Support can also come from good friends and family who know what you’re dealing with.

Being a primary caregiver is a big responsibility.  However, you must also take good care of yourself to be able to give the best care possible.  Make time for yourself, affirm what you are doing, and get the support that you need if necessary as you help others.  You will feel better about what you are doing and be able to move forward with a different outlook as a result.

By-line:
This post was contributed by Kelly Kilpatrick, who writes on the subject of how to become a nursing assistant.  She invites your feedback at kellykilpatrick24@gmail.com.

Helping the aged travel

My husband, Adrian, doesn't like to think of himself as aged even though he's 83 years old, but he was sure nervous this morning before his flight to California.  As his caregiver, I thought I would go crazy, too.  We had hours to get ready, but he kept fussing with his backpack, trying to decide into which pocket each thing should go: meds, reading glasses, cell phone, hearing aid supplies, books to read. 

"There's not that much to pack," I said.  "And you'll have plenty of time on the plane to sort through it and find everything." 

"I hate that," he said.  "I want to have a piece of paper that tells me where everything is."

"OK," I said.  "Let's make one."

Of course, there's a good chance he'll never find this piece of paper when he needs it, or even remember that he has it.  But the process calmed him down at least.

He had already spent two days choosing which clothes and shoes to bring, and I'd packed them, so once we got the backpack finished, he was actually ready to go.

Unfortunately, his first flight was delayed, but they told him to go through security anyway, and I left for home.  As I watched the computer monitor in my studio, I saw that his first flight did indeed finally take off, but his second flight left early.  That meant there was no way he'd made the connection.

Will he be able to find help at the airport to find another flight? I thought.  Will he remember how to use the cell-phone and call his son to tell him about the change?

Just as I was looking up relatives in Philadelphia in case Adrian had to spend the night there, his son called to tell me his father had indeed been put on another flight. It will make a stop in Las Vegas before flying to San Francisco, and won't get in until midnight, but at least he won't have to spend the night at the Philadelphia airport.

"No need to call me when he gets in," I told his son.  "That will be 3 a.m. my time."

"I'll send you an email then," he said.

"That will be great."

Finding ways to manage meds.

Long before any of us get Alzheimers or other forms of dementia, our memories begin to slip.  Forgetting a name of someone we've met before, or the title of a movie, may be frustrating, but it is not harmful.  Forgetting to take our meds, however, can be.

The first step in managing drug dosages is to pick up a plastic pill container at the drugstore.  You can get a simple one which contains a slot for each day of the week, one with evening and morning slots, or even more elaborate options.  I got one for my husband, Adrian, and I fill it for him at the beginning of each week.

The pill box works great when Adrian knows what day of the week it is.  On Sunday, for example, If he sees pills in the Sunday morning slot, he knows he should take them.  If it's empty, he knows he already took them.

But lately he's been forgetting what day it is occasionally.  That led him to take his Monday pills twice one day.  On another day, he didn't take any at all. 

I can understand how it's possible to forget one's pills.  I use a pillbox for mine, and I occasionally forget also.  But not because I didn't know what day it is. Not yet, anyway!

So I am trying to check Adrian's pillbox each day as well as mine, to make sure he takes what he is supposed to take when he is supposed to take it.

Caregiver again?

After spending several years being the primary caregiver for my father and ex-mother-in-law, I am now finding myself in a similar position with my husband, who is 83 years old.  Certainly we have always taken care of each other in many ways, but as life gets more and more difficult for Adrian, I am called upon to do more and more.

It's been a long time since I've posted here, but I intend to write regularly, and invite readers to join the conversation with their comments.  All of us who are caregivers need all the help and support we can get.

I've been very fortunate that my sister Laura moved to my town recently, as she was always willing to listen to my problems.  Now I can vent to her as we hike in the woods, rather than simply speaking with her over the phone.  It's important to find an outlet for our frustrations as caregivers, whether it is speaking to a trusted friend or writing in our blogs.