Wednesday, February 23, 2011

Dependence on Our Caregivers: How do you cope?

I cannot remember the last shower I took where George was not in the room to make sure I was safe. The severe vertigo episodes from the Meniere's has made it so I often lose my balance and I get drop attacks. So, having George nearby during a shower is a safety issue. When we remodeled our bathroom in 2008, we had a permanent classy handicap bar installed, though George miscalculated the height and it is several inches too low. So, we have placed removable grab bars that I can use to steady myself, but they would not hold my weight if I were to grab them while falling. Additionally, a couple years ago, while spending a couple of weeks caring for me, my in law's bought me a shower chair so that when I am weak I can sit. But, now I must have George present to help not only because of my extreme weakness but also because a few weeks ago, George came home from work to find me on the floor after I had tried to take a shower by myself and had fallen from a Meniere's attack.

George is in the midst of his busy season. He is only home awake two hours a day, six days a week.  When he gets home, he is mainly caring for me. I have a lot of guilt related to this because I know he would just like to plop down on the couch and relax but he loves me and wants to take care of me. I have had family, friends and my counselor all tell me to drop the guilt and I am attempting to, but if you would step into my shoes you find it is not so easy. I see George's care-worn face on a daily basis. So, because of my sadness and frustration at my limitations and necessary dependence on him, I often go without some basics. This is embarrassing, but true: I usually go four to five days or more between showers. I'm not really doing anything to get dirty, but still, we all feel better when we're clean.  

So, today I was stubborn. I honestly can't remember the last day I showered. I know the reason is a combination of the days blurring together and the fact that it has been a while . I did not have any vertigo, so I felt safe I would not fall from the Meniere's and midday decided to attempt taking a shower by myself. As I got out of bed and gathered my clothes I felt quite shaky and weak. I got through the shower okay, but as I was getting out, my legs were starting to give out from under me. I sat down, threw my clothes on, made it to the bed, turned on the television and immediately fell asleep. My body was so worn out that I slept for quite a long time. On days like today, taking a shower is a work-out.

I would love to hear your stories of how you have had to be dependent on others, how it has made you feel, and how you have coped emotionally. I know that I am not alone, but it would be a great comfort to hear others' stories.


  1. I know exactly how you feel. I am often consumed with guilt about how much Stuart has to care for me.
    We are lucky that he has a job where he works at home, but it is still demanding. However, he is here if there is an emergency.
    He tells me how grateful he is that he can be here for me, and how I just don't understand how much I mean to him. I don't see where I'm a very good wife as I am, but he argues. My therapist also tells me that I need to believe him, and let go of the guilt. But it is so hard.
    I also feel so selfish. I demand so much from him, not literally, but so much of his time. And he never does anything for fun away from me. I really feel that he needs to find an outlet where he can do something out of the house away from me even if it's just for a little while once a week. But it's so hard for him to leave me.
    Some days are better than others and I try to take advantage of those days. But I often have spells where I don't have a good day for a long time.
    I too often don't get a shower for days. Or get out of my sleep clothes. I have found that a shower will often trigger an attack for me, especially if I'm washing my hair. I need to make sure the water is a little on the cool side, if I get over heated in the shower I will start spinning. I can usually lower myself to the floor, our shower is so small, if I had a drop attack (unless I fell against the door) I think I would just lean up against the wall and slide down. : )
    But it is so much easier if Stuart is in the shower with me, he can use maneuver the shower head so I don't have to lean my head back to wash my hair....
    I do sometimes take baths, but only if he is there to help me get out of the tub. However, I can do most of it by myself, he just has to help me get out. (I have gotten better at that, I turn over on my hands and knees and then hold on to the tub and wall and get up that way.)

    I know this doesn't help. I'm just commiserating with you.
    The only thing I can say is that we need to stop being so hard on ourselves.
    Since your husband is in his busy season, do you think you could get someone to come over and help you do some of the basics once in a while, so when he gets home he could just veg, or do something to pamper him.
    When I do feel well enough I try to pamper Stuart a little bit. I will rub his back, or his feet. I always try to make dinner. Sometimes isn't possible. But I try. I've become a wonder with the crockpot. I usually feel a little better in the mornings, so I throw something in the slow cooker and it's done by dinner. This helps Stuart out a lot. And he hates to cook.

    I guess I'm trying to say that I try to celebrate my caregiver as often as I can, and make things easier for him when I can. Sometimes, I have to draw completely on his energy, he's wonderful about it. I just wish I could do more for him. But I think little things help.

    Oh, I also have a walker, and it has helped a lot. If I'm using it and start having vertigo it will hold me up so I won't fall. It has helped me to be much more independent, especially on bad days when I used to have to have Stuart just to go to the bathroom. (sometimes I still do, but the walker has helped.)

    good luck!
    I'm glad I found you.

  2. I too know you feel. Because of my Hemiplegic Migraines (HM) and Prinzmetal Angina, I require 24/7 monitoring and then care when an attack occurs. To go from being independent woman to dependent is extremely difficult. At first I felt so trapped and angry. Then I moved to grief and overwhelming sense of worry and guilt. I'm not only dependent upon Julie my caregiver but also my father, the state, and family who support us financially.

    How do I cope now? Those around me have had to tell me over and over that it's Ok and "it's not my fault." But when an attack strikes and ruins an event, how can you not feel awful and guilty? How can you not feel like a burden when you're draining your father's investments month after month waiting on the government to decide your SSD case? How about last Christmas when my 3 year old niece flashed her new toy camera in my face and caused an attack, ruining Christmas that day?

    I cope best with God. I lean on Him. I have a worry box in my office with various scriptures on it. Each time I have a worry or feel guilty, I write it down on a piece of paper, put it in the box, and release to Him.

    As for my family, I just try to let them know how much I love and appreciate them. I wish I could do more to ease their burden. But I do what I know how, which is to release it to God.

    Great topic, Kelly! Big Hugs, Tonya

  3. Wendy, Thank you so much for sharing. I appreciate all comments...the longer the better! Thank you for being so open and vulnerable. I love what you said about celebrating our caregivers. I have found that saying thank you to George for the little things he does really means so much to him. And like you said on better days, I try to pamper him with good meals. :) He eats canned souped usually! I'm glad that we've connected. Kelly

  4. Tonya,

    I really identify with what you said about going from an independent woman to a dependent woman and how incredibly difficult that is. And my heart goes out to you in needing 24 hour supervision.
    Oh and what you said about others saying "its not your fault"...we must have the same tape playing. It is *so* hard to extract our illness from us. In some ways it *is* us so it feels like it is our fault, but really it is not us, it is the chronic illness. But, if we didn't have it, there wouldn't be the issues. I go round and round with that sometimes.
    I love your worry box idea! Ironically I have the same type of thing. When I have a burden, I write it down, put it in there and away on a shelf inside my closet. I feel like I'm symbolically handing it over to God. He tells us to come to Him with them, but I often forget to really actually do it!
    Thank you so much for sharing and being so honest. It is so good to hear from others that it is hard for you to shake the guilt too.

  5. I have a worry box, too. But, mine says "SFJTD" - Something for Jesus to do.

    My husband, unfortunately, is unemployed. It's stressful from a financial point, but it's a blessing from a caregiving standpoint.

    I try to help around the apartment in whatever ways I can. Kelly, you mentioned laundry. I have trouble with this, too. He typically does the laundry, but I help him fold it because I can sit on the bed and fold with him.

    We enjoy cooking together, but it takes so much out of me. As I've started to improve a little (with my neurostimulator), I've been able to do a little more, but we still try not to overdo it. We try to cook a meal together every day or every other day (sometimes less often, depending on how I feel). Nothing super fancy. Sometimes I have to sit down and rest, while we're preparing or cooking; and sometimes I have to stop and he has to finish cooking. But, it's something we enjoy doing together.

    I don't shower all that often either. It just seems like a waste of energy - it's not like I leave the apartment very often, and I'm normally in my pajamas or around the apartment clothes. My main problem is the heat making me feel faint/dizzy. I need the hot water for my back and neck pain, and the steam sometimes temporarily helps my sinuses and headache. But, it makes me feel like I'm going to pass out, which I'm somewhat prone to; and it's exhausting/wears me out. My husband is always in the next room and check on me to make sure I'm alright.

    I constantly thank my husband and tell him how much I love and appreciate him and everything he does for me. He looks confused at the gratitude because he feels that he's not doing anything spectacular, just what a husband should be doing for his wife. I still tell him, though. :-)

    This is a great topic. Blessings.