Friday, April 19, 2013

TAKING CARE

I'm sure a few have wondered if I have disappeared off the face of the earth.  It sure feel like it.  I have been really busy, that's for sure. For the past two years I have been trying to restart my pattern business, and little by little I have created quilts, dolls, and children's clothing, just waiting for me to write patterns and get into PDF documents.  Yuk.  I hate that part.  Worse than writing a term paper. Several people have told me to "Just get going on it" and they are right.  I'm trying, really I am. I just have other things that are taking priority right now. The days and weeks are flying by, it's just crazy!
If you have been following my blog for any amount of time, you probably know that I am taking care of my mom.  My goal has been to keep her at home instead of the nursing home.  

Let me just say right now that we are very fortunate to have one of the nation's top rated nursing homes in my town, just 90 seconds away from my home by car, and it is wonderful. We have experienced other nursing homes over the past five years and this one is an absolute blessing.  

Anyhow . . .  please let me just tell you a little bit of what has been going on. They say it is good to vent, and here I go. I hope you will forgive my rambling, I think it is a very healing thing for me to share this with all of you. And PLEASE understand, this post isn't to whine and complain and tell you how hard I have worked, but to enlighten those of you who haven't yet experienced this situation, so you can appreciate those who are caring for others. I feel it has been a privilege to care for Mom.  She took wonderful care of me, and I am happy to do the same for her.

My mom has battled cancer, arthritis, and has survived losing both my dad and her mother within 3-1/2 days of each other. She also has severe osteoporsis, and has had four or five falls over the last few years resulting in bone fractures. She has spinal stenosis, which has also been progressing over the past four or five years.  

Being the only child in town, I have been pretty much managing her affairs and seeing to her needs during this last five years.  As time has progressed, so has my level of involvement. What started off as going shopping, seeing to her meals, doing laundry, and driving her to appointments has progressed to giving her showers, seeing to all her personal hygiene, taking over her financial affairs, writing bills, managing appointments, and all aspects of running her home. 


Busy, busy, busy!!! Even though I am a stay-at-home mom, running two households can get to be a little tricky! So when am I going to find time to work on the patterns?  Hmmmmm.

Now, sadly, we are at the point where she can no longer do anything for herself.  Thankfully, my sister quit her job and came to live with Mom to give me a break last year. Other than me filling in so she could get out of the house or go home for extended weekends, she took care of everything.  It was a much needed break, and I greatly appreciate her putting her life on hold for us. She ended up staying much longer than she planned, but finally a couple months ago she returned home. She was amazing, and my hat is off to her for being there  24/7.  It is a different situation when you are caring for a demanding toddler, because you are the mom and you can say now be nice, sit still, have patience, and tell them because I'm the mom, that's why! When you are dealing with a demanding elder it is a different story. You can't speak to an adult the way you would a child, and sometimes they don't realize how demanding or crabby they might be, and it is frustrating.  Mom has been in and out of the nursing home for rehab for strengthening after falls, and each trip home has been harder and harder. She still wants to be home, and after everything she has been through I am determined to keep her there until it is no longer possible. Of course I am crossing my fingers, praying, and wishing for renewed strength and a little more time at home. 
This post is my gift to all of you caretakers, mothers and fathers, husbands and wives, and those grandparents who are raising or helping raise grandchildren. Taking care of people is one of the noblest and most heartfelt things you can do.  I do believe there is a special place in Heaven for all of us. 

I thought it was difficult taking care of Mom over the last several years, but now I realize that was not nearly as difficult as it could be, and will be.  She could barely stand with help, and has been transported by wheelchair to bed, bathroom, and to her favorite blue chair.  I can't begin to tell you about the aches and pains and muscle strains trying to lift her, and let's not even get started about my poor knees, who are on the way out!! There is a LOT of bending involved in dressing someone, you just wouldn't believe it till you did it!   I would literally plop onto the couch with exhaustion when I got home at night. 

She cannot be left alone at all, and I am managing with the help of a wonderful daughter-in-law and family friend, and my son who lives with my mom.  My husband has even spent the night, and has gone to her home early mornings to fill in during the 1-1/2 hour time frame that my son has left for work and my morning helpers arrive.  I would get to Mom's early afternoon and stay till she is in bed, around nine or so, seven days a week.  Even when someone else is there taking care of her, she constantly calls me for various reasons.  I think it just reassures her to hear my voice. Oddly, every time she is in the hospital or nursing home she seems to get more frequent spells of confusion, resembling dementia.  Once she is home it goes away.  A little forgetfulness and confusion, but much less.

I once walked into her hospital room where she was staying after a fall. She was alone in her room, sitting in a wheelchair, chanting my phone number.  She was confused, but somehow must have felt that if she could reach me she would be safe.  It broke my heart, and actually brings me to tears just writing about it. My Aunt Diane, her sister, says I am her lifeline. 


It is  both physically and emotionally draining caring for people.  I have realized in my conversations with people that there are so many of you out there taking care of family members, or perhaps as a job. Trying to get her to stand up, coaxing her to try to take one step, taking ten minutes to get her situated in bed, just to have her inform you she needs to go to the bathroom again, is exhausting. Seeing the blank stare that is beginning to replace the sparkle in her  bright blue eyes is heart wrenching.  

Yesterday, I took her for her followup doctor's appointment. I told him of how she seems to be worsening. He did a few motor coordination and muscle tests, and asked more questions. He suspects Parkinsons disease. I am kicking myself thinking I should have noticed the symptoms and connected the dots.  You see, my husband also has Parkinsons.  He is still in the early stages, but there is some progression.  I am aware that the time will come when I will once again be a caretaker, but maybe this time for him. Then again, who knows what the future holds, maybe him for me. I do know that once Mom can no longer stand on her own I can no longer keep her home. It will be a sad day, but it is inevitable.  Until then, I guess my purpose in life is to care for others.  This really won't be hard.  I have always been a nurturing person.  First my four children, and the grandchildren, and now Mom. 

I still plan on launching my pattern business to supplement our income once my husband can no longer work. It is taking so much longer than I imagined, but I have to do what is the most important thing first, which is taking care of Mom.
  
Last week Rose, our family friend who is one of the two people helping me, called to tell me that Mom could not get up out of her chair and needed to go the bathroom. I ran over to her house, and once I was there I realized something was very wrong. She was weak and shaky and didn't look well at all.  We called for an ambulance to transport her to the ER.  They said all her levels were fine, but admitted her for observation. Her doctor recommended rehab, once again. So back to the nursing home we go. They are still using a lift instead of letting her try to stand on her own, she is just that weak.  If she gets strong enough, and I can get her in and out of her chair to take her to the bathroom and get her in bed I can take her home -  even if just for a little while.  I am praying she will improve, because I am just not ready to call it quits.  

I would like to thank each and every one of you caretakers out there. I know of several of you whom I have met through blogging. Please accept my sincere thanks and appreciation for all you do for those in need, on behalf of those who may not be able to express their gratitude.  


Whether caretaking is a job, or if you are helping a family member, friend, or handicapped child, I know that it is one of the hardest jobs there is.  I see so many of you around me now. I guess now my eyes are opened and I am noticing more. Everywhere I look I am seeing elderly people with caretakers. I am amazed at what great lengths you go to to care for others.  I appreciate your kind words, your warm encouraging smiles, your gentle touch, and your patience.  I see the appreciation upon the faces of those being cared for, and I am brought to tears nearly every day visiting in the nursing home and seeing all you angels on earth making a difference in someone's life.  

Sadly, my mom is starting to go in and out of dementia. She really does not seem to understand the great lengths people are going to in order to care for her.  

Sometimes I look into those blue eyes and I know that she might not realize how hard I have worked to care for her, but I hope she somehow feels deep down in her soul that someone loves her very much, and will be here for her, no matter what.    


27 comments:

  1. Wow. I'm exhausted just having read this. You deserve an award!
    I have RA, and have had each of my ankles operated on over the past two years. At 32 years old I had to move back in with my parents. My Mom has done so much for me, from serving me breakfast in bed to paying my bills.
    I'm beyond greatful, and I remind her that I'll be taking very good care of her someday.
    I hope I do as good of a job as you are doing with your Mom!
    Take Care of yourself too!
    Erica :)

    ReplyDelete
  2. Julie,
    This was so touching, I'm in a puddle of tears. Both of my parents developed dementia: Dad had Alzheimer's; Mom, vascular dementia. Dad was in assisted living the last two years of his life, as the Alzheimer's was quite advanced. They took wonderful loving care of him, and I will be forever grateful to the staff. Mom stayed at home until the end, which was ultimately a mistake, as she needed far more care than her children could give her. Four years after her death, I still feel tremendous guilt at the anger & frustration I felt with her in those last years. Although I don't miss the woman that she became with the dementia, I do miss the smart, funny woman that she was.
    I commend you and your sister for all the care you're giving to your mom. I know it is hard and I will keep you and your mother in my prayers.
    xx Julie

    ReplyDelete
  3. If I could hug you right now, I would, you're simply an amazing lady and I'm sure your mum knows how much you love and care for her.

    Sending you virtual hugs, Estelle xx

    ReplyDelete
  4. Oh Julie.....

    My friend Meri is in the same boat....you really should contact her, you two could talk....Having had both of my folks died when I was in my 20's was horrific, but having them become the children and me the adult would be so terribly sad, day in and day out.....I have nothing but respect and compassion for you and your family!!!! Big Hug, Sandy

    ReplyDelete
  5. Oh Julie, she knows.....she knows in her heart and you know that I know what I'm talkin' about! Please check your email, I have a question for you dearest.

    Love ya'
    Meri

    ReplyDelete
  6. It is a very difficult and sometimes thankless job. I've been there and I know how hard you are working and what a vigilance task it is. At least you can hold your head up high and know that you are doing everything you possibly can to keep your mom as happy and comfortable as possible. ((HUGS))

    ReplyDelete
  7. What a heart wrenching post - one that brought back many memories for me. When my mother was diagnosed with a glioblastoma brain tumor I quit my job and moved 400 miles away to care for her and for my dad who had severe heart problems and diabetes. After just a very few months my sister did the same thing...it took two of us to do all that needed to be done. We spent one year doing that and while it was a huge blessing it could have been mentally debilitating if I had been alone. My father died 4 months before mother and as hard as it was we would have done anything we could to have kept them just one more day...and one more day...and one more day. My heart hurts for you but it also rejoices for the memories you will have. blessings, marlene

    ReplyDelete
  8. julie, Your mom is soooo very lucky to have children and family members who care for her so well. I admire what youre doing. My mom took care of her mom along with her sisters and brothers for a couple years, as a result were able to keep her home and out of a nursing home. I know that was a blessing. I think about my own parents whom I am a little estranged from and it worries me. they are getting older.
    in anycase.. you are angel and in the end, you will know that you did everything you could to make sure your mom was well cared for. big hugs to you! you have a lot to deal with.
    xoxoxo
    vivian

    ReplyDelete
  9. You are an inspiration! What a blessing you are to your mother. What a beautiful way to honor and love your mom. I admire you greatly. I pray that you have continued strength and much affirmation around you. I have always said I would never have my mother in a nursing home. I hope that day will never come. I will always be inspired by your story.

    ReplyDelete
  10. Be kind to yourself. God knows your struggle and watches over you an your mom.

    ReplyDelete
  11. Julie I have wondered where you had been and now I know.
    You have been very busy indeed. You must know in your heart that your sweet, kind heart is keeping your Mum's spirit alive.
    Don't forget to care for the carer though, your own heart and soul needs to be nurtured too. Be kind to yourself and allow your own dreams to shine. Your family are so very fortunate to have you in their lives.
    blessings and hugs to you
    Melanie

    ReplyDelete
  12. Angels of the Lord, bless your mother. Angels of your mother, bless the Lord. May you all find peace.

    ReplyDelete
  13. It just broke my heart to read your post, and memories flooded back to when my sister and I were caring for my parents. They too were quite ill but unwilling to go to a nursing home. It was so difficult, and when we finally had to make the move to a nursing home it was based totally on the fact that we could not meet their medical needs anymore. They went to Heaven shortly after, exactly 8 weeks apart, and I still miss them with all my heart. You are in such a difficult situation, caring for everyone and also trying to care for yourself. I will keep you in my prayers, and I have the utmost respect for your love and integrity. God bless you, sweetie.

    ReplyDelete
  14. Hello lovely Julie...I read your post this morning and thought that I would come back when I have a some quiet time to leave my comment. I have to say that your mum is so lucky to have you....you are such a special lady! I can imagine how difficult it is for you but one day I'm sure you will be rewarded ten fold for giving so much as you so deserve.
    Thank you for your comments about my crochet today too! I'm having great fun and learning each day..It's a great way to spend just a little time in the evenings when you have a quiet moment...
    Hope you have a good new week,
    Take care,
    Susan x

    ReplyDelete
  15. Sending good thoughts your way and lots of prayers! I am an only child and was lucky to have the help of my husband ad daughters to help me take care of my mom and dad.... We tried having my dad live with us... We lastest two weeks. We just couldn't manage his level of care. My mom lived with us for two years....we had hospice help the last two months... The hardest work I've ever done but I wouldn't trade it for the world. She was so happy with us and we learned so much from her!! You and your family are doing an amazing job! I'm sure your mom knows! Elder folks often are confused when not in their usual environment...it's called Sundowners Syndrome. Hugs Chris

    ReplyDelete
  16. This is a beautiful post. It has touched me deeply. Thank you for sharing it. God bless you all.

    ReplyDelete
  17. you are in my prayers, as well as your mother. My dad died last November after several years of declining health, and I am still constantly grateful for the wonderful staff at his veterans home. they were so special in their care for him. they cried right along with me and I knew they really cared. it makes such a difference. my mother too is on a slippery slope of decline there and knowing how she is cared for makes all the difference.

    ReplyDelete
  18. Julie,
    Thank you for this heartfelt post. Sometimes, the rest of us take for granted those of you who are caregivers to our elderly parents.
    Linda

    ReplyDelete
  19. Julie- You are amazing! Care-taking can be so very hard. My grandma took care of her own mother until her mother's death, and then she succumbed to Alzheimer's. It was a sad and difficult time for all of us. I have Parkinson's also, and worry about the time when I will need help and care. When that time comes, I hope I am as fortunate and blessed as your mother seems to be! Keep going and vent anytime!! It helps get the icky feelings out so you can move forward!!
    ~xoxo, CoriLynn

    ReplyDelete
  20. Well missy, you got your hands completely full...My heart goes out to you. I completely understand cause I take care of Mom these days as well..and before I read this earlier I was looking at the pile of dishes here at Mom's house thinking I don't want to do this anymore. Cause even when she was okay I been cleaning her house since I was 12..Took care of my alcoholic Dad who later became sick with everything under the sun.. and now Mom has heart disease and a plumonary lung disease because of Dad's smoking along with diabeties high blood pressure etc...Her knees are nearly gone with to much pain and Arthritis she can barely get up or down and she can't hear good and I think is also losing her thoughts and memories...Girlfriend your not alone in this.. I'm broken with all my aches and pains in my hands with carpol tunnel and Arthritis and I think my knees are going to...But the Good book says to honor our mothers and fathers ... and I also think one day will be there and will want the same..My Mom too has done tons for me..sometimes she drives my looney but I love her just the same...Hang in there sweetness..Your a great gal...with love Janice

    ReplyDelete
  21. You are giving your all! You must accept help when you can! My sister is going thru this with her husband, it's a long lonely life! God Bless You!

    ReplyDelete
  22. Anyone who cares for a loved one needs to be commended. It's a hard hard job. I'm in tears as I read this because I fear for my mom's health. She's had 2 major events that have affected her and even she knows sometimes her dots don't match up. She had a massive heart attack and was out for 48 hours but came back to us then just a few years ago she had a Great Dane come across their fence and attacked her. He just missed her juglar and almost crushed her tracia(spelling). The attack landed her in Ben Taub with a major surgery and infection then while recovering she ended up in the Pysc ward. By the grace of God she went home and she was my momma again. It scares me even now when I think about it so while I may not know exactly how you feel I can feel you heart ache. They're our momma's. Hugs and prayers

    ReplyDelete
  23. Thinking of you...I went through this with my grandmother. She lived with us when I was in highschool :) I loved her dearly.....and it hurt when she didn't remember my name but I know in her heart she must have had a piece of me with her because she would smile when she seen me. God Bless you. We are now going through a simular situation with my mother in law :'(

    ReplyDelete
  24. Lucy,
    Love you!
    Always here for you!
    Love,
    Ethel

    ReplyDelete
  25. Just thinking of you today, Julie.

    Love,
    ~Sheri at Red Rose Alley

    ReplyDelete
  26. Hello dear! I've missed you and just wanted to come by and say hello. I now see that I didn't comment on your last post. I don't know how that happened. I think sometimes I must read and THINK I commented but I don't. Anyway, I'm so sorry for these trying times you're in. God's strength and peace to you. ♥

    ReplyDelete
  27. God's blessings of strength and joy to you dear Julie! ♥

    ReplyDelete