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No Encouragement
Still Waters
Posted: Thursday, December 22, 2016 9:01 AM
Joined: 2/6/2012
Posts: 1092

I was never encouraged to care for my mother. People would discourage me and tell me to get a life, spend time with family and friends, take a night off.

Now that she is gone, I am trying to figure out why people said that to me. All this time people made me feel bad for no reason. I was not missing anything. It was the most important thing anyone can do for someone.

I should have been encouraged. What do you think their motivation was? I am feeling very resentful over this and wondering if others had the same experience.

Posted: Thursday, December 22, 2016 9:32 AM
Joined: 12/4/2011
Posts: 19631

I would have encouraged you to have some balance also. This would not have been meant to discourage you from caring for your mother. 

Do others care if our loved ones are cared for at home or elsewhere? I don't think so. One does not get a gold star from others for giving up our lives...we give so much by our own choice. What someone else thinks is not important....we do not need encouragement.

I would look kindly on the people that did show concern for your well being...since you had other care for your mother surely it was not unreasonable that they would suggest some "me" time.

Still Waters
Posted: Thursday, December 22, 2016 9:55 AM
Joined: 2/6/2012
Posts: 1092

Thank you jfkoc. I needed encouragement, it was a hard job both emotionally and physically. All I got was resistance from family and friends. I think it was because my mother was considered a non-person in the eyes of others when she got Alzheimer's. Based on my experience you can't have balance and be successful at caring for someone who needs total care. The question I asked had nothing to do with caring for someone at home or not. But since this seems to be an issue for you, for the record it was MUCH more work caring for her at home vs. the nursing home. But worth it. I had more "me" time when she was in the nursing home. I was and continue to work full time. If I was retired like you were and I had aids at home at the same time, it would have been a piece of cake.

Posted: Thursday, December 22, 2016 10:43 AM
Joined: 12/4/2011
Posts: 19631

For the record I was not retired and until the last few months had little help and no, I do not have any issue with where care takes place. My husband was at home but I would have made another choice if it were in my husband's best interest.

By balance I mean that some time for oneself is a positive. It made me a better caregiver I think. I made it a point to keep in touch with my friends and family. Sometimes going for coffee, emails or a phone call to catch up on what they were doing. I made another point of not talking about how life was here. I lived worked. 


Still Waters
Posted: Thursday, December 22, 2016 10:58 AM
Joined: 2/6/2012
Posts: 1092

Jfkoc, if you were working then who cared for your husband?

If someone would have said "spend as much time as you can with her, I understand if you don't want to come over for Christmas" that would have gone a long way with me. Instead friends and family would feel sorry for me if I spent Christmas at the nursing home or at home with my mom or could not understand why I would not try harder to stop by. I did not understand it then and I still don't.

Posted: Thursday, December 22, 2016 5:23 PM
Joined: 5/21/2016
Posts: 2007

I have received more encouragement from people I don't know personally but online from different forums, than I ever received from my blood relatives or even close friends I know in person. Perhaps there are so few of us.
Posted: Thursday, December 22, 2016 6:27 PM
Joined: 12/4/2011
Posts: 19631

fortunately my work could almost exclusively be done from our home
Posted: Thursday, December 22, 2016 9:14 PM
Joined: 1/27/2014
Posts: 242

I think the lack of encouragement sometimes comes from people's own guilt. And sometimes people who haven't walked this road just can't understand. I once confided in a friend that I was so emotionally and physically exhausted, going out with friends was not possible for me. Her response was well wouldn't you rather be exhausted from doing something enjoyable with friends? Hell yes, but that was not my life at the time.
Veterans kid
Posted: Thursday, December 22, 2016 10:10 PM
Joined: 10/17/2014
Posts: 1239


True THAT!  



His Daughter
Posted: Friday, December 23, 2016 3:20 AM
Joined: 6/25/2014
Posts: 2270

I'll chime in here that I think what Still Waters was lacking,  is that she received little if any validation for what she was doing with and for her mom.  This is a very lonely road we travel.  And it might just be nice if our friends and family even tried to acknowledge that our role is valuable.  In some ways, this is similar to how "stay-at-home" mom's feel.  Just because they don't earn a paycheck, it doesn't mean they are doing anything.    

We all know that we need some "me" time.  Sometimes, that's just being at work during the day, and away from this disease for awhile.  But it sure would be nice if one of our friends or family would acknowledge the vital role we play.  A "kudos" every now and again sure would help.  

As far as motive, Still Water, I agree with Bonus on this one.  I think it often comes from personal guilt.  

Posted: Friday, December 23, 2016 5:04 AM
Joined: 12/15/2011
Posts: 4120

My view is.....I think outsiders believe we need balance in life.  Under normal circumstances I would agree.  When a loved one is ill the suggestion makes little sense to me.  

No one encouraged me either and had they done so I would have ignored them.  I felt no guilt or apprehension about what I had chosen to do.

Posted: Friday, December 23, 2016 6:48 PM
Joined: 1/23/2012
Posts: 781

To all of you,
I am a normal healthy woman, my husband  passed from end stage ALZ, the 4th of July 2015, he always said our 10 acre property was his '' kingdom",kept him home and care for him till the end. ( I totally understand not everyone can do that). He also was a Muslim I am not ,  but we gave him a total  muslim burial, in FL's only natural Semitary.I did everything I could and do not feel guilty about anything , and am moving on with my life. That is what he would want for me.It is the healthy thing to do. I am not on any drugs, not on therapy, want my life back after 13 years of care giving, and there is nothing at all wrong with that.

To all of you that feel guilt, great pressure or what ever, my empathy, love and hugs go out to you,and may you find peace at some point in your lives.

The best happiest and healthiest Christmas and New- Year that you can have
Love Surfergirl

Posted: Wednesday, December 28, 2016 1:27 AM
Joined: 11/16/2015
Posts: 22

Still Waters, sometimes people say things trying to mean well. In my case, my family encouraged me to place my sweet husband in a MC facility.  I had suffered two acute bronchitis and pneumonia in less than two years so, consequently, they were very concerned over my own health.

 Friends and acquaintances would tell me over and over "take care of yourself" "who is going to take care of him if you die first?", "how long do you think you can go on like this?", "place him in a nursing home where he will be well-taken care of by professional people".  They all meant well  thinking my DH would be better off in MC and I would get much needed rest.    Little did they know that after 7 weeks my husband had been starved, dehydrated, and constipated by that MC facility to such extent that his system was shutting down by the time I brought him home. Little did they know that my DH was so emaciated he looked like a prisoner from a WWII concentration camp.  I'm sure had they known all these things, my family, friends, and acquaintances would not have encouraged me to place my husband in MC.

After I brought my DH home then I was"encouraged" by the social worker to place him in "comfort care" AKA "palliative care, hospice care".  Little did I now that this unethical group from "comfort care"  would put the final nail on my sweet husband's coffin by keeping him drugged without food and water for days and days until I put a stop to it.  That is another story and someday soon I will post my story so caregivers can be aware of how things can go so wrong. 

I am still grieving and miss my DH very much and I ask for  his forgiveness everyday.  I cannot blame people for encouraging me not to take care of my husband anymore.  They meant well but people really don't know what you're going through (as a caregiver) unless they walk in your shoes. It's easy to say "place him/her in nursing home" but there's a lot more here involved such as: emotions, feelings, and guilt.  Did people know my heart would break every day I left him there at the MC facility?  It's not easy.

Still Waters
Posted: Wednesday, December 28, 2016 11:57 AM
Joined: 2/6/2012
Posts: 1092

I ask for forgiveness every day too Nadine.

Posted: Thursday, January 5, 2017 1:35 PM
Joined: 11/30/2011
Posts: 2105

I think our loved ones, would just simply say to us, "thank you for loving me so much and caring for me so much".  Forgiveness doesn't and shouldn't enter the picture.  What would there be to forgive?  Loving and caring and doing the absolute best and humanly possible for another person?  No, they would say, thank you so much for what you did for me.

Forget what other people say, it doesn't matter, what matters is what comes from your heart, what you know you need to do to live with yourself and what you can humanly do..  Self-encouragement is what matters.  Most people don't know what it's like until they themselves go through something like this.  So just assume, they are well-meaning or simply clueless and do what you feel you have to do.  Self-encouragement is about the only thing you can depend on and doing what you feel you can live with and look yourself in the mirror every day of your life, keeping in mind what your limitations and situation are.  Limitations are not weaknesses, they are reality.  People should never compare themselves to another person, it just never equates.  Everyone's circumstance is unique to them. 

Posted: Saturday, January 14, 2017 1:49 PM
Joined: 6/12/2016
Posts: 1512

Dear Stillwaters,

I'm sorry you didn't get the encouragement you needed about caring for your Mom. I think you deserved encouragement. I think we all do. As human beings we should always encourage others, no matter what the situation is.

I guess your friends and family just "didn't get it". I know most of mine didn't and still don't.