Absent, AWOL and At A Loss

I’ve been absent lately, I know. The past six months or so have been some of the most difficult in my life. So many times I’ve wanted to blog, but whenever I would sit down in front of the keyboard, the words would just not come. There’s so much to say, so many emotions, so many worries, so many questions. But they’re stuck in me like cement. When I tried to construct a thought, let alone a sentence, I just couldn’t. And honestly, I really don’t know what I want to say today, other than the words: “I’m still here.” And for me, that seems like a major accomplishment right now.

My mother’s condition has deteriorated. In addition to the Parkinson’s and dementia, she has received two new diagnoses: severe COPD and hypothyroidism. Her daily intake of medications has multiplied, both in number and in complexity. Her dosage scheduling is like a one of those frustrating puzzle games where you have to constantly move the pieces around until you hit on the solution. One pill has to be taken first thing in the morning one hour before she eats anything or takes any other medications, and four hours before she can take any vitamins or supplements (and she takes a lot, so those now have to be redistributed throughout the day). Her next round of medicine includes her Parkinson’s med, which apparently can’t be taken in close proximity to her consumption of protein. But she takes that four times a day now… so the trick is figuring out when she can have a meal.

OLYMPUS DIGITAL CAMERAMeals are a challenge anyway… she doesn’t want to eat. And she doesn’t want to drink fluids. And she doesn’t want to exercise, or even move. She spends all day lying down in her recliner, sleeping, except for a when she goes into her bedroom to take a nap. She doesn’t want to leave the house (except for doctor appointments) and she hardly talks to me at all. She resents me enormously, and constantly refuses my help. She hates it when I try to encourage her get up and take a walk, read something, or at least turn on the TV so that her brain will have something (anything) to latch onto. I am not her favorite person. She is not a happy woman. She is narcissistic and passive aggressive, and everything is my fault.

The daily struggle (please eat, please drink, please move, please engage, please acknowledge when I speak to you so I at least know you have heard me ) has worn me down. Every day looks the same. I’m tired, but I have to keep going. I’m frustrated, but I have to hold my temper. I’m grieving, but I don’t know what to do with that. I’m overwhelmed with the enormity and scope of what’s happening. Even as I write this, there are so many underlying events and untold stories that make up the current situation. Just thinking of them all wears me out. Writing them down seems almost futile…. pointless. It is what it is.

I had been working full time (from home) while taking care of my mother, but the job stress and the caregiving stress were a lethal combination. I’m unemployed now. And I’ve gone through what little savings I had left. The loss of income has added another dimension to my dilemma. Now, I’m not just tired, I’m trapped.

A week and a half ago, during one of our petty daily scenarios, I reached the proverbial tipping point. I had had all I could take. I left the room, threw a few things into a tote bag. I got into my car and as I was pulling out of the driveway, I called my brother and told him he needed to come and take care of my mother. I went AWOL.

I drove and cried, drove and cried, for hours. I didn’t know where I was going. I didn’t care. I just drove. My brain was foggy. My heart was aching. All I wanted to do was find a shady spot where I could pull over and just rest.

I had enough money in my wallet for half a tank of gas and a cheap motel room for the night. It was a filthy place, but it was quiet. I didn’t want to talk to anyone. All I wanted to do was rest. And the last thing I wanted to do was go back. In fact, I had convinced myself that I wouldn’t go back. They would just have to figure something out. The next day, I got back in my car and headed south again… just driving. Numb. Determined. Aimless.

By this time I had checked in with a friend, and I went to talk with her. Then I hit the road again, this time heading west. Just driving and thinking. My half tank of gas didn’t last too long. Finally that night, long after my mother’s bedtime, I reluctantly returned to her house. My brother was still there, and we talked for a little while. Then I went to bed.

The next morning I got up, and when I went to give my mother her first morning medication, she didn’t say a word about my absence, or ask how I was. Just another day. And then another, and then a week, and here I am now.

I’m at a loss. A loss for words. A loss for ideas. A loss of independence. And a loss of  identity, too, I sometimes think.

But as I said at the beginning of this saga, I’m still here.

12 thoughts on “Absent, AWOL and At A Loss

  1. Avatar of TrishTrish

    Jan, I’m very happy you let us know you are still here. You may not believe this but I often wonder how you’re doing. I had always envied how you were able to work from home and be a full-time caregiver. It’s fascinating how caregiving can change what we want or need. I crave routine right now because things are so chaotic but can see how it would become drudgery day after day.

    It sounds like you did what you needed to do and gave yourself a rest. Is there a long term solution you and your brother can discuss? It seems like you have so much on your plate and have lost so much. Managing it by yourself seems impossible for anyone given the deterioration of your mom.

    Have you been able to see a doctor for you? It’s okay – no, it’s critical – you take care of yourself. Depression may be keeping you in its grasp but a doctor may be able to help with that.

    Like I said, it is wonderful you checked in and told us you are still here. Please keep us updated and keep checking in. Please take care.

  2. Cathy

    I am glad that you wrote; although I am relatively new to caregiving.com, I certainly feel for you. I think it is especially hard with dementia because they don’t remember what you are doing….what you have done. And there is not gratitude. It sounds like there is other issues with your mother, but even if she wasn’t self-centered…dementia makes one like that, I think. Or at least appear to be. I agree with Trish. So important to take care of yourself. Hard to do, I know. But so important.
    ~Cathy

    Reply
  3. Avatar of DeniseDenise

    Hi Jan–I’m so glad to hear from you!

    It’s awful when it’s so hard you can’t even find the words to describe it. Any time you want to simply write “I’m still here” we’ll know what you mean and we’ll find the words.

    It’s awful to feel trapped, to feel like your life isn’t yours and to feel powerless.

    What can we do that would help you? How can we help bring some control for you?

    Reply
  4. Avatar of EllysGdaughterEllysGdaughter

    Jan, so glad you did drive away instead of doing something you should regret! I understand the behavior of your mom to be so incredibly frustrating. Hopefully you are feeling a little relief, getting this out. I am glad you are “still here” and checking in. My grandma takes thyroid med and if you can switch to her taking it at nite before bed it could be easier than dodging all the other meds and food! Prayers on the way for you!

  5. Avatar of PegiPegi

    So glad to “see” you again. Good for you for going AWOL and taking a little time for yourself; just sorry it wasn’t enough. It’s so hard, and it is just that, hard. Hopefully just getting some outlet here helped. When you get to the point you feel everything is out of control, it’s hard to pull in the reigns. I wish I had that magic wand; but in lieu of that I hope you can find some peace. And some comfort in knowing you are not alone; we’re all with you in spirit.

  6. Avatar of Jan

    Hi Jan. I’m new on here, and it’s amazing how your story resonates. My mom is very similar, but does not sit still. She is mostly on the war path! When you said there are other stories to tell, but it’s useless….I get it. The stories are not significant because mom isn’t ….mom. None of what happened yesterday matters either, just today. I hope you know your story really helped me. Thank you for putting it in writing.
    Self preservation? It’s a good thing!

    Reply
  7. Avatar of BobinMOBobinMO

    Your succinct and refreshingly honest letter about your life is sure to cut close to the bone for a lot of readers here on Caregiving.com.. You just proved once again that brevity can often say more. Now if only there’s wasn’t so much to say.

    You’re one of the many who do EVERYTHING within your power to do the right thing yet you can’t help but feel like nothing ever turns out quite right. Please don’t feel that way. Instead just accept the sad fact life runs its course and we’re just along for the ride – and usually the tank’s half full.

    What makes me the most sad is your care yesterday and today has got even higher costs tomorrow be it employment, relationships or even the terrifying state of the checkbook. The price for loving doesn’t come cheap yet you’ve sure made this reader find you worth your weight in gold.

    Reply
  8. Avatar of BobBob

    Jan: Thank you so much for your gift of what you are truly experiencing. It helped me not feel alone, as I am going through some very exceedingly difficult times again. The good news is that I will be speaking to a professional who specializes in all aspects of eldercare; etc. to help me with the concerns I am having. I’ve been MIA for a while myself. I’m still here also. Best, Jan

  9. Avatar of MissAngieMissAngie

    Jan,

    Thank You for sharing your feelings. Caring for my mom with dementia
    gets overwhelming at times. I can really relate to everything that you shared. I usually drive to the foot hills behind my house over looking the valley and just enjoy the view and try to quiet my mind.
    It’s not much but it gives me a temporary mental break from repetitive questions and wanting to pull my hair out.

    Your story gave me some comfort knowing that there really is someone else who is experiencing the same frustrations and trapped feelings.

  10. Avatar of ejourneysejourneys

    Jan, I am so glad you were able to get away for some respite, though like Pegi I wish it could have lasted longer. Thank you for being still here and for writing through and about such struggle.

    I hope there is a way to ease the grip of so much.

  11. Donna Quinn

    Hi Jan,
    I am new to caregiving.com. I just wanted to say thank you for sharing your heart, sharing the truth in your heart. I think “I’m still here” sums it up. Sometimes that’s all we can be is just here. I am new to caregiving. I’ve been doing it a little over a year now and already I feel lonely and that there is no one to turn to except God. But sometimes I just need God to put someone here on earth that can relate to these feelings that come from caregiving. I think He just did. Last night while sitting with someone I was crying out to Him for help, for strength and I found myself searching for support groups online and found this website.
    God help us all.
    Donna

    Reply
    • Avatar of JanJan Post author

      Donna, you’re never alone. I tried finding you in the member list to send you a friend request, but couldn’t locate you. Send me one, if you can, and we can share our stories.

      Blessings to you.

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