150,000-199,999 SparkPoints 188,169

A caregiver says, "In a perfect world..."

Monday, May 13, 2013

My life looks over a cliff....
It almost crashes daily, but not quite.

Debris is all around me; floor needs sweeping to get the chunks gone.
His laundry is done daily by the aide but hers gets done when it gets done.
Dishes are usually clean in the dish washer but the kitchen looks a mess.
Enough food for meals is there, you just have to hunt a bit.

People are clean and only one bed gets made.
The cat is fat and furry and cute but he always wants more food and scratches the furniture and me.
Sunshine streams in the windows and skylight but the shades are mostly askew needing fixing.
Two computers hum with fun and information on desks full of undone business and cups and glasses.

Health aides arrive not knowing what needs doing and everything needs doing.
Jokes and puns and dumb songs fill the air even if daily hygiene needs help badly.
A delicate balance is maintained with spring plants coming up near the sleeping guy in the wheelchair.
Teeth and skin and meds are tended by experts though hair and beard grow out of control.

He looks more like a scruffy Santa Claus than a trim suited businessman.
She is calm and actually happy even if looking over the cliff.

Share This Post With Others
Member Comments About This Blog Post
  • LINDAF49
    Well and creatively written... Chris, you are so precious in your life as caring caregiver... I grow in spirit and understanding in so many of your posts. Gentle hugs for your day and take one bit of clutter away so three more may replace it is my constant struggle...you are not alone, and very much loved.
    1829 days ago
    I cared for my mother as long as I could. She has Alzheimer's, and sadly when I had to put her in a home, she did not realize I was no longer there. She only misses her horse and dog. We do what we can. emoticon
    1833 days ago
    The task of a caregiver is humongous with little seeable rewards. And the house gets awful because all your time and energy is focussed on caring for him. As one being on the recieving end of a lot of caregiving for a long time I can tell you it hurt me so to see what my DH was going thru, and it shamed me that I had to have help with everyday things like dressing washing and going to the toilet, or commode in my case. It made me sad angry and depressed and I groused and was not a good patient. But I knew I could not live without him, trapped in some god awful nursing home with uncaring attendants. No the house wasn't a showpiece, but he did what he could. And because of that I stayed alive to the point where I got out of the wheel chair and got moving and today I can take myself to the doctor's appointments and do all the normal things myself, with only and occasional hand if I need it. I am emoticon that you will soon find housekeeping aide to help you fix up the house. They surely should be able to shave him and trim his hair. They do in most nursing homes and in private care. You would think the agency would have it as part of their duties. If not maybe its time to talk to a supervisor and see what can be done. It a long seemingly endless uphill battle with so much you have to push for to get the help you need! I thank God that you are the selfless strong courageous lady God knew you to be when he put you and your DH together. Why? Because He knew all along that you could handle the job the best for this man you love. Lean on Him and know He will take care of you! emoticon
    IKacey co-leader of the Chair Exercise Team

    1834 days ago
    Chris - my heart goes out to you - caregiving is a never-ending task and the rewards don't always FEEL as wonderful as they REALLY are. (HUGS) you are a great inspiration for me.
    1834 days ago
    Do you know about Caring Bridge? You can blog on there and ask all your caregivers to subscribe, so they can all be on the same page. A couple of my student's parents did that so they would not have to repeat everything to all the different support people. I loved your contrast and comparisons. You have found the love. I hope this is a little easier since you retired, though probably more emotionally heart breaking.
    1834 days ago
    As hard as this is, it is even harder after they are gone. So sorry you don't have more help!
    1834 days ago
  • FROSTY99
    One day at a time, Sweet Jesus, just get me thru this, one day at a time!
    1834 days ago
    emoticon emoticon emoticon
    Sad to say, but I am a caregiver only to myself, without the he.... the rest could have been me as the her/she.... Today I have made myself a promise... My #1 goal is to "De-Clutter" my world. Bit by bit, nook by cranny, and all flat horizontal surfaces will not be cluttered. They may have dust or dirt, smudges or crumbs or rings... but stuff will have a home...either in my home or someone else's home (via a thrift store) or the town morgue (the dump). I will get organized and stay organized (all stuff will have its assigned location). I know that the rest of my world will follow suit (be de-cluttered as well) and I will become the best person I have ever aspired to be.
    My grand-mom used to say, " A home should be dirty enough to be happy, and clean enough to be healthy." So, it (my home) really is clean enough or would be if I could get to the nooks 'n crannies... it is the clutter that is UN-healthy for mind and body. Please help keep me going on my de-clutter quest. IT IS a major WAR !!!
    1834 days ago

    Comment edited on: 5/13/2013 3:16:09 PM
    1834 days ago
    emoticon emoticon
    1834 days ago
    Wow what a powerful blog. You express the beauty and the pain so eloquently -- you are the voice for so many other caregivers. emoticon
    1834 days ago
    That is so beautiful! I did a lot of caregiving of my mother when she was alive and I know so well the work, stress, heartache of watching a loved one going through whatever they are going through, the good times, the rough times, the times with no sleep, the times of feeling overwhelmed by it all. I also work as a service coordinator in my job with elderly and disabled and regularly go into home where a paid caregiver is in at least a few hours a day to help and know the wonderful gift they can be even if they can't be there all the time. Such a beautiful tribute. Both family member caregivers and paid caregivers are so very special. It takes a special person to work as a caregiver.
    1834 days ago
  • MISSG180
    Seeing the beauty in the midst of the crisis is a real gift. I admire your perseverance.
    1834 days ago
    1834 days ago
    emoticon emoticon
    1834 days ago
    Put yourself into other peoples shoes .look around and see what needs done . do they have to ask ? are you able to help when you see what needs done . be caring and loving to all . even those who do the work need help sometimes . they are human also . I would not cut another hair anyone .
    1834 days ago
    It sounds like you are finding that inner peace at least for the most part. Do you make a list for the Home Health Aids on what you want done? They should be able to shave your husband and also trim his hair. It would probably make him feel better too. If they do not want to do it call the agency and ask what exactly is in their job description. Ask the agency about getting his hair trimmed if they cannot. Take it a day at a time, a step at a time. Ask God to give you the strength to get through it all. Praying for you and sending hugs. Pat
    1834 days ago
    That's a pretty good summary of how it feels.
    1834 days ago
    I care for someone who has end stage liver disease. He's someone I love with my whole heart. Some days are really hard. I'm on another website that is kind of an online support group for people suffering from or caring for those with this illness. Not long ago, a kind woman who suffered from cirrhosis posted the following, and I wanted to share it with you today. At the time I printed it and I try to read it regularly. It reminds my why I do what I'm doing, and helps me continue on, even on the most difficult of days. =)

    This is what she posted:

    To our caregivers:
    Your work is often a thankless task. You are surrounded by misery, pain, confusion, anger and weakness every day. The daily challenges are great. "Your life" has been put on hold to care for someone with cirrhosis.
    Please never forget the importance of this task that you have taken on. The person that you are caring for is helpless, confused, weak and at times angry and impatient. They are suffering the agonies of a horrible disease; they are feeling their life slip away. They are not capable of making rational decisions, they cannot prepare meals, they cannot take their medication correctly without help and they cannot take themselves to their doctors’ appointments or for procedures. In their lucid moments they see their bodies wasting away before their eyes, they can no longer enjoy a nice meal, they cannot enjoy a carefree day in the sun with a breeze blowing through their hair, they are ashamed that someone has to clean them up, they are ashamed that they are dependent on someone else to survive. Yet, they endure all of these things, painful tests, procedures, and one doctor’s appointment after another, for what? They want so much to live and be well and happy again. Your caring efforts are their only hope.
    Whether you know it or not, they find comfort in your presence, your smell, your voice, your soothing voice, your warm gentle touch. You are their only comfort.
    So, please just know how much you are appreciated and that they are thankful for your being there for them, without you there would be no hope.
    Caregivers, please take care of yourselves, you are so needed and appreciated!!!!!
    BR>I hope this encourages you today, as it does me on an ongoing basis. =) (((hugs)))
    1834 days ago
    You are so brave and loving and dong such a haard job. emoticon and emoticon
    1834 days ago
    I like this blog. I like how you see the reality, and yet do not miss such things as the sunshine streaming through the windows and plants coming up through the ground. Your last sentence is beautiful - and I'm glad that you're happy, even while being 'snowed-in' with things to be done.

    I hope you will soon be able to get the kind of help you need; that you won't be constantly having to train new aides.
    1834 days ago
    One step at a time. emoticon
    1835 days ago
  • Add Your Comment to the Blog Post

    Log in to post a comment

    Disclaimer: Weight loss results will vary from person to person. No individual result should be seen as a typical result of following the SparkPeople program.