Facing Reality: Caregiving Has Changed Your Life

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One question that is often asked on the AgingCare.com forum is, "How do I deal with the reality of leaving behind the life I had in order to become the primary caregiver to my parents?" The words used vary by the questioner, but the question is essentially the same. How do we cope with this major change in our lives?

It may sound selfish to some, but to caregivers who dove into caregiving with full hearts and no planning, then ended up sustaining this life-altering mode for months and often years, it's a perfectly rational question. People put their lives, as they are living them, on hold in order to care for others. That's good. But when "hold" becomes the new norm, there's a mental adjustment to go through. And sometimes that includes dealing with resentment.

Adjusting to the new normal
Most caregivers go into caregiving mode with full hearts and wonderful intentions. They rarely stop to think, "Hmm, this could go on for years. I'd better plan it out. If I move to part-time at work, have more child care and spend mornings caring for my parents' needs, it will be difficult, but possible. If I continue to work full time, I'll have more for retirement, but I can't do it all. I have to plan this out."

No. We just jump in. Dad has a stroke, so of course we are there to help. He survives but needs a great deal of care. Mom can't handle the hard physical work of caring for Dad. And she's getting forgetful. So, it's up to us. We make sure our folks get in-home help and make adjustments in our own lives so we can give them maximum help. Sometimes, we quit jobs or go to part-time work in order to care for our parents.

No matter what our age when we begin caregiving, caregiving is likely going to change our life as we've planned it out. If we have kids at home, they will have to adjust to sharing their time with you – with getting less of you. If you are older when caregiving enters your life, it often affects your retirement plans.

 
Read more about: caregiving, family caregiving
 
 

Comments

 
  •  Comments 1 to 10 of 14 
 
 

musiclover1

Give a Hug

Jul 17, 2010

This website has been so helpful to me! Sometimes just knowing that you are not "alone" can mean the world. In my situation, yes, some days and nights get scary and I feel overwhelmed, but I try to count my blessings and the biggest blessing in my life is that I still have my mom. Yes, our lives have changed drastically since her elective heart surgery during May, 2009. She was told by two cardiologists that she had severe aortic stenosis but as an othewise healthy 83, she should consider having this surgery and not wait two years down the road for this to become an emergency. So, together my mom and I talked about this and though I told her this was "her decision", I wanted her to make an informed decision. I bought a book on aortic valve replacement and even sat next to her as we watched a video of this surgery. It took awhile but a year after receiving this diagnosis, my mom said she knows it is necessary so she decided to have the surgery. Our journey since then has been very difficult. She had this surgery in Pittsburgh and was shortly discharged to a transitional care unit at Montefiore which is a facility attached to the hospital where the surgery was performed. No one at the hospital gave me advice so I chose a skilled nursing versus an acute care faciltiy. The nightmare then began. She suffered all during June, 2009 from a buildup of Co2 yet the entire month no one diagnosed this and I was given false hope by the supposed "doctor" that my mom would be discharged on July 2nd, 2009. I knew in my heart something wasn't right and when she fell asleep and could not be awakened, the nurse thankfully called and had her taken back to the hospital where they determined this Co2 retention. She had a trache and had to be put on a ventilator. Now, some 14 months later, she has been moved from facility to facility trying to wean and has gotten C-Diff and bacteremia from being hospitalized which has only complicated her recovery. Last September I thankfully was able to have my mom relocated to Maryland close to my residence. Today, she continues to be confined at a wonderful chronic care facility in Baltimore where they are trying to get her as recovered as she will be. Through it all I have hoped that my mom would be another Barbara Bush or Barbara Walters and be able to return home and have the spring in her step. I nearly lost her on more than one occasion but today she is still fighting and till my dying day I will continue to be her advocate and fight for her. I miss my "mom" the way it used to be. She was an otherwise healthy 83 who lived by herself, still drove, paid her bills, took her medications faithfully and I so enjoyed our times together going grocery shopping, out to eat, shopping as I tried to visit her almost every weekend. I miss the little things like talking daily on the phone to her. Now, she can't hear probably as a result of all of the medications and we have to write to each other. Also, she can't talk with the trache and concerns that with a speaking valve it will affect her respiratory rate. However, my mom is 33 miles away from me at this facility and I can visit her on weekends and most days after work. (I have a very demanding career that I enjoy and am not ready to retire at age 59). When I walk into her room it hurts to see my new "mom" mostly helpless but she is still my mom and I love her with all of my heart. She has always been my "biggest fan" and has been my best friend throughout life. At age 19 when I was offered a career in the big city,she unselfishly encouraged me, her only daughter, to pursue my dreams. She stepped back and silently prayed for me and always had my back. So to those caregivers like myself who sometimes feel like running away, I encourage all of us to stay the course. I personally cry sometimes and feel beaten but I pull myself up by my bootstraps and keep moving forward. I would rather have my wonderful mom even now that things have changed than not. She has a great sound mind and so every second spent with her is precious. I am so proud of her for being the fighter that she is. I won't give up on her ever. Hang in there everyone. How can any of us walk away from our loved ones? Yes, it is the toughest jobs we have ever had. But I recall how tough it was for my mom when she raised her two children with an abusive alcoholic husband and she never walked away. She was a pretty lady who had choices but she stood there by her kids. I for one will not walk away either.

 
 

Jodigirl1000

Give a Hug

Jul 22, 2010

Thank you for being your mom's advocate and a for sharing your story. You are an inspiration. Cherish every moment God gives you with her!

 
 

Jsomebody

Give a Hug

Jul 31, 2010

The article hit a lot of true marks for so many of us caring for elderly family members. Though I am a grandchild, full time unpaid carer and have no say in the situation I realize I must take some control for my own sanity!

 
 

dbmackey40

Give a Hug

Jul 31, 2010

I'm right there with you. I have days when I do fairly well, and others that I simply fall apart. I am exhausted and can't even seem to put a simple sentence together, at times. If I have learned one thing, it is to pray without ceasing. I pray for wisdom, guidance, patience, and rest. It helps to know there are others doing the same things you are every day. God Bless!

 
 

Ginny

Give a Hug

Aug 2, 2010

Thank you for sharing your love for your Mom. I, too, am extremely blessed with taking care of my Mom. She will be 95 in October, she has lived with me and my husband since 1995. At that time, 15 years ago, I also had my Dad living with us for two years until his Alzheimer's caused us to place him in a facility to better care for him. He lived 4 more years and the staff was so very good to my Dad. My Mom has Macular Degeneration so she is considered legally blind and she also has lost her hearing in one ear. She has had cancer twice (removed) in the last 15 years but she still is in very good health for her age. She can take care of herself and since she has been with us for so long we have just included her in our lives. I do work part time and my husband is semi retired working 3 days a week and he has been so very generous and compassionate to his "Mom" too. It has changed what "we thought" our life would be like and we sometimes wonder if we will have our own time and lives. We do believe God wants us to be there for her and this is what He has planned for our lives now. We find time to get away for a weekend or overnight sometimes and that has
been so very important. I take time to 'refuel' when I go to the
gym and swim 3 times a week. It also has been very good to
have time alone with God to share my weaknesses (resentment & jealousy) with Him and ask for His help to not let these feelings stay in my head and heart. I am the only one that suffers if I let them move in and take over. He knows all that each of us do for our parents and it pleases Him that we are so caring. I have a little saying that helps me, "Things turn out best for the people who make the best out of the way things turn out."

 
 

ohiohorselvr

Give a Hug

Apr 11, 2011

I gave up my farm plus 4 yrs of independence to move back to my hometown to care for my mom who has alzheimer's. I have alot of resentment, anger and grief. I love my mom and am an only child. I do have people that help out when I'm gone for the day or a weekend trip. But I really need to get past the resentment and anger of what this has done to me and my life.

 
 

ROXANNE

Give a Hug

Apr 11, 2011

My blood pressure went from 110/70 to 162/82......there, I am now officially ill from taking care of someone with dementia, and for a GREEDY SISTER who only cares about herself.

 
 

AnnieGirl

Give a Hug

Jun 19, 2011

My Mom was diagnosed with Dementia in 1998. At the time I had just moved back home from overseas because my Dad had asked me to, after he'd had a stroke. I was the youngest daughter, the only one unmarried and I adored my Dad and couldn't refuse his request. Mom's diagnosis happened 6 months after I moved home. I had a full-time job at the time and I took care of Dad until he passed away in 2001. I built my own home and Mom moved in with me in 2003. I changed jobs so that I could work part-time and continue to take care of Mom. Mom is now 91 and to be frank, I am very resentful that I'm still left taking care of her with practically no help from any of the rest of our large family. Most of my Brothers and Sisters live overseas but come to my home (they consider it the family home now because Mom lives here!) every year for their annual vacation and none of them lift a finger to help. Mom has to be washed, dressed, fed, moved with a hoist yet I could count on 1 hand the number of times any of them have fed her and none of them have ever done any of the other chores with her. Because 2 of my sisters donate US$200 per month to an account for me - an another Brother sends me a few hundred dollars once or twice a year, they consider they have done their duty. As for the rest of my siblings - a phonecall once every 2/3 months is the sum total of their interest. I am so depressed and so angry right now. I hope my Mom passes away within the next 12 months because I don't know how much longer I can do this. I've been a loving Daughter up to recently and I don't want it to end like this but I feel so isolated and alone. I'm crying even as I'm typing this. I get 2.5.hrs of home help, 5 days per week. I get respite care for 1 week about 3 times per year. It just seems to me that the rest of my siblings consider their lives more important than mine because I never married, don't have a partner and don't have children. They tell me about trips here and there, granduations, anniversary parties etc - they don't seem to get that I'm stuck here 24/7 taking care of OUR Mother. I wonder if I knew what was ahead of me, whether I would actually have answered yes to my Dad's request back in 1998.

 
 

Jsomebody

Give a Hug

Jun 19, 2011

I know exactly how you feel...I have second cousins have been to Disneyland four times since my grandfather has been here...

 
 

darrobertson

Give a Hug

Aug 14, 2011

I think it is wonderful you have such a great attitude in your care giving. You are to be admired. I try but often those bad feelings take over and I have a diffivult time moving on. I'm trying touse this site as an inspiration and also a place to vent. I feel great guilt as I too love my mother very very much. Carol

 
  •  Comments 1 to 10 of 14 

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