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This article brought tears to my eyes! I was caregiver for my wife for (only?) four and a half months from the time that she entered hospice until she passed away. I see all of these other stories of years of caregiving and I can't imagine how I would have held up that long. The hospice nurses and aides always said, "Do your best" and "You're doing a good job" but I never felt like I was doing enough. When I could look at the situation logically, I believe that I mostly was doing the best that I could, although not always. However, when I look at it emotionally I feel that I fell far, far short. I have to keep working on forgiving myself for those times when I fell short.
I hear you loud and clear, but my problem is my husband feels I overextend my caregiving duties and is not very supportive. He also feels we should be moving away /to spend more time with our grandchildren. All this brings discord to my marriage. My 90 year old Mom is healthy and independent but I feel needs my emotional support since my dad’s passing two years ago. I always feel I have to choose time and effort between the two. I do appreciate your article because it is a reminder that I realize my best is good enough and it brings peace of mind. Thank you.
Thank you for this post. I sure needed it. I know the phrase "just do your best" as I use it to care for my 4 young children, homeschooling with chronic head pain myself, and now caring for my father. It's a welcome reminder to care for ourselves.
The second most painful thing in the world is when your best is not good enough... when you think you've gone above and beyond, and someone can still find fault with it. But the most painful is when they take it a step farther and act as if you have not even tried or cared at all.
I may have learned to make peace with the times my best is not enough to accomplish what I most deeply wanted, but it is yet another big step on the journey of forgiveness to let go of the hurts from people who accused me of sloppiness or irreverence when I was really struggling and making every effort in the world to do as well as I did!
I had a mom who seemed to expect nothing less than perfect adherence to many, many rules and ways of doing anything, mostly unwritten and even unspoken rules...the assumption was always that a decent human being would just "know better." And for some strange reason I used to cry when I made a mistake in class or wherever...and THAT was itself an apparently unforgivable shameful crime as well!! So now...there are times when I know perfectly well that perfection is out of reach, at least on ordinary human terms, but other times....God help me if I fail in anything in any way. Well, for the big things, the things that really are my fault out of selfishness and what they call "tortured self-concern" - God does help, there is always the sacrament of Confession...hmmm, why do I have such a hard time going there, I wonder?
These are such heartfelt comments and I honor you for your dedication and care for your loved ones. Please let me know if I can ever support you. Blessings to all of you...Vic, Captain and AKingsKid. You all truly humble me with your outpouring of honest feelings.
I started not to post a comment even though as I read the article the tears were streaming down both cheeks. I'm a "Fix It" kind of person but I can't fix this and I have really really tried!!! This journey began in 2005 and it has been one hurdle after another. The last two years my husband has been on home dialysis for 12 hours nightly. Recently we had to add an additional mid-day treatment to the nightly routine. We don't have family near by and until January 2013 when Hospice came to help I was totally alone in my role. Also he does not want anyone but me to care for him. I have great neighbours who are truly a blessing from the Lord. Everyone tells me "Take care of yourself and just do your best". No one tells me "How" to do that or exactly what that means! Thank you for the practical view of doing that.
@ dan robbins, i followed your link and will never regret it. what a kickass writer !! i agree, caregiving changes you forever and the emotional swings arent over when the caring ends. i think americans will always be free thinkers and innovators and i think our society is quickly adapting to the realities of caring for the aged. i could also suggest that non caregivers be careful about standing back and passing judgement on caregiving siblings. its likely that until youve made such a sacrifice yourself, you havent a clue.. you have to enter a demented frame of mind in order to accomodate the end of life of a dementia patient. " really bad acid " how heartfelt !!
Good article and good reminder ...time to stop and reassess...we have to take care of ourselves, let ourselves off the proverbial hook on occasion. If our spouse friend or someone comes to give us time...we must not hurry to get things done that have gone undone..we have to stop and fill our cups with the nourishment we need..not easy but invariably it gives us more energy and renews our spirit
Enjoyed the article, not only do you change during an extended period of time but so does the needs of the loved one. You are constantly readjusting what you do each day to fit the new needs of the loved one. Most long term caregiving sees the caregiver moving from making everything perfect to the acceptance that you can't win against old age. However, you can enjoy having the chance to care for the parent, you make more time to talk to them during the day. The schedule of things I had to do for my father became less important and we adjusted to a new reality. About midnight, I had things on my list I hadn't gotten to, they went on hold until 5:30 am the next morning--it was time to try to sleep. Good article. For those who have never been a primary caregiver, the role is life changing.
Dear Whitesage...Extend your hand to a trusted friend and speak your truth which is that you need help or you need to hang out with a friend. Figure out what you need. Get quiet and listen to your intuition and then ask. Be kind to you.
Wow, this article touched home. That's how I feel....it's day to day, and sometimes, hour by hour. I have been caring for my Mom with AD/dementia for the past few years and I am getting very burnt out. It has just been me alone.
Wow Dan...what an incredible story. I'm so sorry about the way you and your grandmother were treated. You have nothing to feel guilty about. You were a victim of a system that simply doesn't work. It's easy for me to write this and I understand that it's not easy to make the guilt and sadness go away. I'm truly sorry for the pain you are experiencing. Thanks for sharing the blog post from the NYT. I remember reading it and sharing it in my newsletter. Blessings to you.
That's pretty much how it happened here too. Through basically a 5 year downward spiral with my grandmother. I didn't accept (at first) that dementia was taking over. That took me through the hell of becoming her PoA (which was summarily revoked by probate court in CT - which was wrestled from me via the "caring" individuals at CT Protective Services - who turned it into an involuntary conservatorship at a missed hearing). That resulted in her eventually being moved out of her apartment into a home ("in her best interests") -- which, granted, was only a retirement community (from a senior community). That home (the Groton Regency) then moved her FOUR times in as many months. Can you imagine what that did to an Alzheimer's patient? She spiraled out of control and one day last fall I received a phone call from the Regency saying they "couldn't handle her any more" due to the progression of the Alzheimers and she was locked down in a dementia ward where she remains ... barely cognitive. I live in NYC and she is in eastern Connecticut ... roughly 200 miles. Between the travelling every other weekend and the court appearances and the fighting to keep her independent ... I finally did it ... I completely fried all my circuits. I retreated back to NYC feeling like I had lost a war and haven't even been back to visit her since October 2012. Now I'm wracked with the guilt of that on top of the exhaustion (those people that run that place should be arrested -- they call themselves professionals. Unbelievable).
So that's me ... dreading every phone call from that place ... praying it won't be the horrid inevitable news.
So yea, if you're reading this, don't burn out. It's ugly. Thanks for the story, btw! Maybe it will help whoever is going to be the lucky one who has to deal with me when I get to that stage. God help them!
By proceeding, I agree that I understand the following disclosures:
I. How We Work in Washington.
Based on your preferences, we provide you with information about one or more of our contracted senior living providers ("Participating Communities") and provide your Senior Living Care Information to Participating Communities. The Participating Communities may contact you directly regarding their services.
APFM does not endorse or recommend any provider. It is your sole responsibility to select the appropriate care for yourself or your loved one. We work with both you and the Participating Communities in your search. We do not permit our Advisors to have an ownership interest in Participating Communities.
II. How We Are Paid.
We do not charge you any fee – we are paid by the Participating Communities. Some Participating Communities pay us a percentage of the first month's standard rate for the rent and care services you select. We invoice these fees after the senior moves in.
III. When We Tour.
APFM tours certain Participating Communities in Washington (typically more in metropolitan areas than in rural areas.) During the 12 month period prior to December 31, 2017, we toured 86.2% of Participating Communities with capacity for 20 or more residents.
IV. No Obligation or Commitment.
You have no obligation to use or to continue to use our services. Because you pay no fee to us, you will never need to ask for a refund.
V. Complaints.
Please contact our Family Feedback Line at (866) 584-7340 or ConsumerFeedback@aplaceformom.com to report any complaint. Consumers have many avenues to address a dispute with any referral service company, including the right to file a complaint with the Attorney General's office at: Consumer Protection Division, 800 5th Avenue, Ste. 2000, Seattle, 98104 or 800-551-4636.
VI. No Waiver of Your Rights.
APFM does not (and may not) require or even ask consumers seeking senior housing or care services in Washington State to sign waivers of liability for losses of personal property or injury or to sign waivers of any rights established under law.
I agree that:
A.
I authorize A Place For Mom ("APFM") to collect certain personal and contact detail information, as well as relevant health care information about me or from me about the senior family member or relative I am assisting ("Senior Living Care Information").
B.
APFM may provide information to me electronically. My electronic signature on agreements and documents has the same effect as if I signed them in ink.
C.
APFM may send all communications to me electronically via e-mail or by access to an APFM web site.
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If I want a paper copy, I can print a copy of the Disclosures or download the Disclosures for my records.
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This E-Sign Acknowledgement and Authorization applies to these Disclosures and all future Disclosures related to APFM's services, unless I revoke my authorization. You may revoke this authorization in writing at any time (except where we have already disclosed information before receiving your revocation.) This authorization will expire after one year.
F.
You consent to APFM's reaching out to you using a phone system than can auto-dial numbers (we miss rotary phones, too!), but this consent is not required to use our service.
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What it Really Means to 'Just Do Your Best'
I do appreciate your article because it is a reminder that I realize my best is good enough and it brings peace of mind. Thank you.
I may have learned to make peace with the times my best is not enough to accomplish what I most deeply wanted, but it is yet another big step on the journey of forgiveness to let go of the hurts from people who accused me of sloppiness or irreverence when I was really struggling and making every effort in the world to do as well as I did!
I had a mom who seemed to expect nothing less than perfect adherence to many, many rules and ways of doing anything, mostly unwritten and even unspoken rules...the assumption was always that a decent human being would just "know better." And for some strange reason I used to cry when I made a mistake in class or wherever...and THAT was itself an apparently unforgivable shameful crime as well!! So now...there are times when I know perfectly well that perfection is out of reach, at least on ordinary human terms, but other times....God help me if I fail in anything in any way. Well, for the big things, the things that really are my fault out of selfishness and what they call "tortured self-concern" - God does help, there is always the sacrament of Confession...hmmm, why do I have such a hard time going there, I wonder?
i followed your link and will never regret it. what a kickass writer !! i agree, caregiving changes you forever and the emotional swings arent over when the caring ends. i think americans will always be free thinkers and innovators and i think our society is quickly adapting to the realities of caring for the aged. i could also suggest that non caregivers be careful about standing back and passing judgement on caregiving siblings. its likely that until youve made such a sacrifice yourself, you havent a clue.. you have to enter a demented frame of mind in order to accomodate the end of life of a dementia patient. " really bad acid " how heartfelt !!
Most long term caregiving sees the caregiver moving from making everything perfect to the acceptance that you can't win against old age. However, you can enjoy having the chance to care for the parent, you make more time to talk to them during the day.
The schedule of things I had to do for my father became less important and we adjusted to a new reality. About midnight, I had things on my list I hadn't gotten to, they went on hold until 5:30 am the next morning--it was time to try to sleep.
Good article.
For those who have never been a primary caregiver, the role is life changing.
http://newoldage.blogs.nytimes.com/2013/03/22/suddenly-theyre-all-gone/?smid=pl-share
So that's me ... dreading every phone call from that place ... praying it won't be the horrid inevitable news.
So yea, if you're reading this, don't burn out. It's ugly. Thanks for the story, btw! Maybe it will help whoever is going to be the lucky one who has to deal with me when I get to that stage. God help them!