work/life balance

Feeling Alone or Maybe Just Left Out

Depression is a common mood disorder in the elderly.

I always have guilt feelings when I write about any negative emotions I feel in being a caregiver but the fact is, I have them and I expect most other caregivers have them as well. It doesn’t mean we don’t love the person we care for but it means that providing care is not always a piece of cake. If you’re a parent, it’s similar to loving your kids but being angry at them for scratching the car and sometimes seriously thinking of selling them to the lowest bidder. You would NEVER actually do it and would miss them beyond words if they were not around but the fantasy…well, sometimes the fantasy helps to get past the moment.

Feeling lonely is like that. I’m actually rarely alone which is one of the reasons why I feel lonely. I am responsible for Lynn 24/7/365; just like a parent of a small child. Whereas children grow up and leave home, adults with disabilities do not unless they become too much for the caregiver to handle (and that’s not something any of us want to have happen). So, you would think to have Lynn with me all the time for companionship, I wouldn’t be lonely but I am at times.

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Confessions of a Stressed-Out Caregiver

Social Security provides income to qualified workers over the age of 65 and Medicare provides insurance to eligible elderly and disabled.

Often when I meet someone who has just become a caregiver, they ask me how I do it; “How do you handle the daily stress of working and caregiving full time while still managing a home?” I always reply, “I try to take it one day at a time and just deal with what’s happening that day.” Pearls of wisdom, right? Well, I’m here to confess, I apparently don’t deal with stress very well so I’m not sure that I should be giving anyone any advice on this subject. I’ve been caring for Lynn full time since 2009 and I can tell you, it’s starting to take its toll. Here’s my confession.

I do not take things one day at a time. I try to but I’m not very good at it.

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Can You Come Here a Minute?

“Can you come here a minute?” I hear that every 30-60 minutes all day long and you know what?  It’s never a minute. When I enter his room to find out what he needs, I’m typically gone for 15-30 minutes.
Being the chief cook, laundress, banker, shopper, mechanic, fixer-upper, and caregiver; as well as spouse, Mom, grandma, and employee, my days are filled to overflowing. The only time I sit down is to eat and when I do, I’m usually composing a shopping list, taking care of bills, or completing assignments for work OR I’m feeding Lynn as I take a few bites as well. Most of my days are 19 straight hours of go, go, go; so in order to manage my life I have to be relatively organized.
“Organized?” you say as you look around my house. Well, my world might not look organized to you but trust me, it is. I have a hybrid concept of “everything in its place.” Its “place” is somewhere in a particular room, not a specific drawer, (well, sometimes a specific drawer if I use it fairly often) and is usually found somewhere to the “left as you enter the room.” For example, all medical equipment is in the spare bedroom, as is, the urinary catheter supplies. The equipment is located wherever you can get it to fit. The monthly catheter supplies are all on a shelf in that room and the daily supplies are in a plastic shelving unit in the bedroom. One is out of the way and the other is within arm’s reach of where I need it most. Supplies are stored according to purpose, frequency of use and size. I have cheap plastic storage bins stacked around that can be moved to where I need them and which allow me to have “activities” grouped together. Care supplies are organized; nothing else in the room is.
Clothes, for example, are not a priority for me. I want them clean, comfortable, and durable. I usually wear scrubs and they usually look well worn. I throw them in the hamper or washing machine, wait till I’m pulling out Lynn’s last pair of shorts to wear, and then and only then, do I do laundry. When the clothes are clean and dry, I hang them in the utility room next to the dryer for convenience or dump them into a laundry basket where they will probably stay until I need to use them again. My style of being organized – frequently used clothing right where I can walk by and grab them as I need them.
I wish I could be as organized with my schedule….but I can’t.
The key to my survival is flexibility and the ability to break tasks into smaller components quickly so that I can multitask. I keep in mind what is coming up next at all times. If I need to go to the back room to assist Lynn in answering the call of nature, I grab supplies or clean laundry to take with me. I ask Lynn to always tell me everything he needs when I first enter a room so I can plan my “process” for that particular visit. For example, if he needs me to make tea, cath him, adjust his position, and give him nose spray, I would put the water on to heat, fix the tea while it’s cooking, cath him, then adjust him so the process of cathing him would not disrupt the positioning needed, finish the tea then give him nose spray after he drank some hot tea. In my mind, I figure out how long something will take, what can be done in the meantime and what will be the impact on any one request by the sum and influence of all other requests. Through that analysis, I come up with a “routine.” Once I repeat that routine a few hundred times, it’s an automatic response. My goal=save time and energy.
That process works UNTIL he changes his mind in the middle of a routine and messes up the entire schedule. How often does that happen? continue reading at:

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How Others See Me

Whether it’s right or wrong, healthy or unhealthy, most of us tend to “take in” the view others have of us.  I think that’s especially true of caregivers.  Once you become a full-time, all consumed caregiver you tend to lose part of yourself through absorbing the emotions and needs of the person for whom you are caring.  I think in some ways that’s what also sets apart the “born” caregivers from those who just provide care. The healthy balance is in knowing how much to absorb so that you can instinctively know what the other person needs and being able to filter out the rest.

When you are very in-tune to the emotions of another, it’s very easy to take on those same emotions.  If that person is happy, you enjoy laughing along.  If they’re sad, you feel a gloom settle over you both while you try to find ways to cheer them up. When they’re angry, it feels like it’s directed at you, and in fact may be, but the underlying reason for the anger is often their disease process.  However, it’s very difficult not to “give as good as you get” when someone is spewing forth hateful or angry words at you. When those words are spoken, it’s difficult not to wonder if you’re to blame or are you doing a good enough job.  It’s also very difficult to come back and keep taking it.
I’m very fortunate that Lynn rarely directs anger at me.  He gets angry at his situation or the equipment he is using when it malfunctions but he’s very careful not to blame me. He’s very considerate of my emotional needs and very grateful for all that I do for him.  But he also has all his mental functions intact.  Not everyone who cares for someone with MS or other neurological conditions is that fortunate.  When MS dementia sets in, the person with MS might not have a clue as to who their caregiver is or why they have to do what is being demanded of them.  It’s heartbreaking to be in that situation when as a caregiver you are doing your best to keep them safe and healthy but they are fighting you each step of the way because they think you’re trying to harm them.  I can’t image anything much more frustrating.  In those situations you might begin to doubt your own sanity or if it’s the right time to say, “no you can’t have cake for breakfast,” or would it really be okay this time.
There are many challenges that come from being a caregiver that you deal with every day in the privacy of your own home. I know I often devise ways to handle a challenge that to others who might observe from the outside looking in might be seen as being weird or even unsafe but unless you walk in my shoes and have my exact same resources, skills, and time constraints; don’t judge what I do because at the time, I’m probably doing my very best.
It’s easy for people on the outside looking in to make judgments on what you should or should not do. They’ve read an article, heard a story, watched Dr. Phil, or taken a class and have become experts on what should or should not be done.  I know mothers are often criticized about how they handle a toddler who acts out in a store or disrupts a waiting room or whatever. They get “those stares” that cast judgment and they feel embarrassed and ashamed to be caught not being the perfect mother.  The same holds true with caregivers.  In public, Lynn does not want to be fed.  He prefers to try to feed himself so I always have available for him special utensils for that purpose and finger foods he can pick up and eat without too much difficulty.  However, it’s usually not the same food as everyone else and he usually makes a mess.  I can sometimes see the pity or embarrassment in the eyes of others which unfortunately makes us both want to avoid eating in public.
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The Best Laid Plans…Oh, Forget It

By far, one of the greatest frustrations I have as a caregiver is that I have no control over what I want to do and when I want to do it. I am sitting here so frustrated at this moment that I can hardly think straight.
Today is July 4, my day off.  However, I actually planned to work today to catch up on some projects at work that I REALLY need to do.  I had my plans all straight but here it is 4 pm and I have not done anything I planned to do.  I could cry.
I took some “me” time last night from midnight to 2 a.m. to watch a movie I rented from Blockbluster (been trying for a week to even be able to put it in the DVD player).  BIG MISTAKE.  It never pays to take “me” time.  I always regret it later.  So anyway, I took the time to watch a movie; afterwards waking Lynn for his dinner (yeah, I know we have weird schedules), feeding him, doing his night routine and then mine, so I got to bed at 3:30 a.m.  Up again at 5, 7, and 9 (Lynn thinking it was 10.  He seems to think he’s my personal alarm clock and heaven forbid I just be allowed to sleep till I wake up on a day off!) to cath him. I go back to bed to sleep till 10 so I get 5 3/4 hours of sleep (15 min per cath event).  Getting up at 10, of course, makes me  late getting started but I figure, we have nothing special we have to do today, I’ll easily get started by 1 with what I need to do.
Then the day precedes to be shot to h___.  I do the morning prep work while he does his vocal exercises.  I take him to the bathroom and it doesn’t go as expected.  He has to use suppositories due to limited muscle strength and it didn’t “come back” like it should.  That means disaster.  Now we’re waiting in the bathroom and he decides he needs to pee (why couldn’t he have gone before we go the bathroom–yeah that doesn’t make sense to you unless you know that the cath supplies are in the bedroom not the bathroom). I finish that, get him cleaned up and then he announces he wants to sit in his manual wheelchair (he’s trying to toughen up his butt in hopes he can tolerate the cushion in that chair and maybe go to church again one day).  That means rearranging various pieces of equipment to get the manual chair out of of that room and putting him on it instead of the power chair.  That done, we go to the kitchen for his morning pills.
In the kitchen he takes his meds and decides he wants me to put weights on his wrist to work his arms.  That done, I turn to begin preparing my meal….no wait…. he needs me to help him with his arm exercises.  I do that, then take off the weights, and begin to get ready to take him back to his room. No wait….”I want to do pull downs in the weight room,” he announces.
I again go to the weight room (which I had just rearranged to get the manual wheelchair out), rearrange it again to get it ready for him and back I go to the kitchen to get him.  I roll him to the weight room and help him do the pull-down work out and then take him to the bedroom to set up the massager for his feet. I then go to start my breakfast (two hours after I get up) and eat.  While eating I prepare mushrooms for roasting, and cook spinach for his diet; also make his soup for lunch.  As I finish, I hear, “Sweetie, come back. I need to go to the bathroom again.”  Large GROAN.
With sagging heart, I go and take him back to the bathroom (remember, I only do manual lifts so I’m physically lifting him in and out of these wheelchairs and onto the toilet).  He “goes” and then says he might as well lie down awhile so I roll him to his bed.  “Oh, yeah, I want to do  push-ups.” Seriously???
I get out the PVC work-out pipes that I insert under his mattress (out of the weight room, of course) and help him do push-ups.  Then I settle him down for a nap (put his pants on him again, cath him, put his boots on him so his feet don’t cramp, get the TV set for viewing, wash his face, and straighten up the room.)
While he’s down for a nap, I just finish cooking what I put on while eating, washing the dishes and doing a load of laundry when I hear, “I’m ready to get up.”  I get him re-dressed, hook him up to his peddlar,  hear “I’m hungry,” so I feed him breakfast and as I finish feeding him, hear, “I need to go back to the bathroom again.” Major sigh…..
Back to the bathroom, back to bed, redress, get him back up, reconnect him to his peddlar, make him tea, cath again, and do a few adjustments, and now it’s 4 pm.  Six hours after I get up, I’m finally finished with his morning activities and I’m ready to “start” my day.
I give up! I think I’ll just take the take “off.”  After all, it will be time to cath him again in thirty minutes (true enough, he called to be cathed again at precisely 4:36) and he’ll want a snack 30 minutes after than, and then more tea, followed by another cath…..
So much for my plans.
I know none of the above was unnecessary for his comfort and well-being.  I know that he hates the fact that he had to disrupt my day so much (and I’m sure he hated hearing my complaining about it even more).  But that doesn’t change the fact that it’s depressing to have so little control over my plans. I’m tired of being unable to plan anything and I’m tired of disappointments but most of all I’m tired of the fact that I haven’t found a way to not let it get to me.
I really wish it didn’t. I wish I could laugh it off and just roll with the punches but that “funny bone” just ain’t working right now.  Could be lack of sleep; could be the fact my arthritis is really bugging me; or it could be….I’m just feeling sorry for myself and making it all about me.  It’s not all about me and it’s not all about him.  It’s all about us.  We’re in this together and I need to keep my perspective on it.  In the scheme of my life right now, not being able to work on writing policies for my job is not a big deal. Being able to make him comfortable and take care of his needs IS a big deal. I just have to refocus and get my perspectives right.
Hmmmm….I think I might just have the thing to do that…I think I’ll go make a slushy out of watermelon….yeah, that will make it all better.
Happy 4th of July.

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Adjusting to Disappointment

I had a serious disappointment tonight when I got home from work. Not about Lynn but something work related.
Once a week I go to the job site where I touch base with my staff and take care of a few meetings that I feel need to be done with “face time” rather than over the phone.  On those days when I get home, I catch up with emails that I can’t really address while on site. As I was reading my emails tonight, I got a denial on a request I had made.  It was something that I had expected to get an affirmative response on and the denial came as a shock.  Obviously I can’t go into what this was about because it’s confidential but what I want to share is how it brought up all the fears again that what I’m doing–being both a full-time caregiver and a full-time employee–is negatively perceived by others.
The reality is that the rejection I received was not directly about me but it was something that impacts me indirectly–a lot.  I can tell myself intellectually that this “no” was not about the value others place on what I do.  But emotionally, what I hear myself saying is that what I do is not as important to my organization as I thought it was…and that’s hard to accept. I work SOOOOO hard to do a good job.  Thinking that those efforts are not appreciated hurts me to my core.
What has this got to do with caregiving you say?  Here’s how I link it in my mind.
…I think that I’m very good at what I do.  I believe that my staff and I actually save the company a lot of unwanted pain and suffering through the interventions we do. However, what we do is intangible. We don’t bring in any income.  We do “prevention” work so there is no tangible return-on-investment.  We “know” that if we did not step in to resolve many of the issues we get involved in that it would likely impact staff turnover and possibly there might be more complaints that have to be addressed both from internal and external sources.  However, you can’t prove the cost savings with prevention. So, many people feel what we do is an “extra” and therefore, non-essential.
That’s where my fear comes in.  What if the message I’m receiving by this rejection is actually that we are not needed?  What if this is the first step to them saying that others could do what we do in time so we are not needed?  That thought is too terrifying, so I’m not going there right now.
On the flip side…
My first response when I got the rejection was anger followed by depression and tears.  I was really hurt. It also made me feel unappreciated and undervalued.  Maybe I’m too sensitive which could certainly be true being that I only slept 5 1/2 hours last night.
Then I start thinking that if that is how they feel about what we do, maybe I should go somewhere else where I might be appreciated.  That’s where the brick wall comes in.  The reality is that I can’t go anywhere else no matter whether I’m appreciated or not.  I’ve worked here over twenty years.  I’ve worked my way up in the organization.  If I went somewhere else, I would be starting over.  I only have a bachelor’s degree. To make what I make now somewhere else, I really would need a master’s degree for my application to even be considered (their loss if they didn’t consider it though).  There is absolutely no way I could work on getting my masters degree.  I can’t commit the time or the money toward that pursuit.  So I’m stuck.
If I was not a caregiver, I would go back to school in a heart beat.  I love to learn and though it would be a challenge at my age, I’m sure I would enjoy the experience. But I already fit in 30 hours into a 24 hour day.  I can’t get to the store that is five minutes away to buy groceries without major planning and rushing through to get back. How could I sit through a three-hour class, even on-line, and be able to get anything out of it?  I couldn’t.  I had thought about getting my certification by doing self-study.  Then the day after I decided to do that, I had one of those thirty hour days where every twenty minutes I was called to do 15 minutes of caregiving and gave up THAT idea.
My reality is…I’m a caregiver first.  Then I’m an employee.  I need this job to be able to give us a place to live, insurance to pay the medical bills, and access to all the other things I need in life.  I can’t “give” to my job like I once did.  Where before I was exceptional and I amazed people at how much I could get done; now I do a good job, even a great job at times, but I can’t do an amazing job any more.  I just don’t have that option.  Now, I do the very best I can with everything I do and often don’t feel like I do anything well enough.  Some days that’s true; everything suffers.  Other days, I shine.  I just have to accept that I can’t be all things at all times and I’ve lost some of my perceived value by those with whom I work.
That perception by others that I don’t have the value I once did, hurts but not everyone feels that way, thank goodness.  Tonight I got a lovely email from someone I work with on occasion.  She was thanking me for sharing in my blog because she is just starting down this caregiver journey.  That really made me feel good.
So, I’m disappointed tonight…heartbroken for the person who will be affected by the denial even more than me, but trying to face my reality.  My priorities in life have changed.  This blog is now one of those priorities; its how I try to help others in some small way. I have to believe that maybe what I share helps others so maybe some of the trials have a greater purpose as well.  I hope so.
In the meantime, I take life one minute at a time. Have a good cry over the disappointments and move on…It’s just a job now…I have other things much more important to do.

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