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Forgotten Caregivers
MJEdwards
Posted: Sunday, April 23, 2017 9:18 AM
Joined: 4/20/2017
Posts: 1


Is there anyone who cares about us?  I am not looking for sympathy.  I need understanding, but haven't been able to find it or get anyone's attention.  I've heard it talked about saying things like "how horrible, what a shame, heartbreaking, some people have lost everything taking care of their loved ones, finances are gone, depression, aging..can't find work, isolated from family and friends..they don't want to get involved...".  But I see it is not taken seriously, what is being done for those of us that have experienced it all and still living a nightmare?  What about those who will be experiencing this in the future, and there will be many more.  There is no cure, there is no medication and it is getting worse every day.  The Government isn't talking about it, most networks, big organizations, BILLIONAIRES, philanthropists, don't want to talk about it, it's a taboo subject.  Right now because my Mom's Alzheimer's disease went on for years, I am almost done trying to get some kind of life together.  I am homeless, have an auto immune disease and was hospitalized.  My disease needs to be monitored and requires medication for the rest of my life.  My retirement and savings, everything is gone.  I have no options left.  I am an Alzheimer's Advocate.  My goal in life after my Mom passed away was to try to change all of this backward way of thinking, to pass on things that I learned from  being a Caregiver for over 12+ years.  I was a successful entrepreneur, a strong business woman active trying to do good, to make a difference, I loved my family, I loved my Dog.  I feel like nothing now.  I'm not valued.  I'm not needed.  I'm totally alone.  No one is listening to me.  The World needs to, has to, change.  Being materialistic, instead of caring about the fate of the wellbeing of your family, your neighbors, your fellow citizens is taking us into a downward spiral.  I know how hard it is to sacrifice, and so many others know, it is very, very hard, but you can do it, even if you are alone. Sacrifice is the highest form of love.  I'm with all of you that have chosen to open up your heart to be a Caregiver.  Keep trying to tell your story anywhere and everywhere you can.

 


bela
Posted: Sunday, April 23, 2017 10:28 PM
Joined: 12/15/2011
Posts: 3953


I hear you loud and clear.  To exhausted at the moment to elaborate.  I woule like to continue the dialogue...the topic, the issues....I'm listening.  When talking to a group of legal advocates and mentioning the same issueyou have mentioned they sadly had to respond whith what seems to be the truth..our society doesn't care much about the elderly or their issues which is why the topic of AD isn't discussed...policies are not addressing the problem or worse.  And yes, at least for the most part, it appears that the elderly are most often the victims of this disease.  Think about it, few policies in our elections address elder issues...

No more words for now...the topic leaves me exasperated and feeling defeated....

How can we help you now ????

Bela


Tay46
Posted: Wednesday, April 26, 2017 5:04 PM
Joined: 9/18/2013
Posts: 224


I soooo feel your pain. People keep telling me it's going to get better. I'll be glad when that day comes.
dayn2nite2
Posted: Wednesday, May 10, 2017 12:14 AM
Joined: 6/20/2016
Posts: 1054


I also used my retirement savings to keep my mother at home with me and went through a bankruptcy after that.  She's been dead 5 years and I find I still am having trouble making ends meet (and I have 1 full time and 1 part time job), and that's partly due to the change in the working world and partly because I used all my income and savings to provide for my mom's care and even after the NH I was the only person out of the 3 children who provided clothing and personal items for her, which was a considerable amount of money.

I've resigned myself to the fact that my retirement will be bleak and if I'm honest I'll just say that hopefully I won't live a long life.  The thought of living into my 80s like this is unbearable to me.
bela
Posted: Tuesday, May 16, 2017 7:55 PM
Joined: 12/15/2011
Posts: 3953


I'm still here with my listening ears ....thinking of you

 

<3
His Daughter
Posted: Thursday, July 6, 2017 11:19 AM
Joined: 6/25/2014
Posts: 1710


MJ, there are plenty of us who understand all too well exactly what you are describing.  It's almost a PTSD reaction.  Part of the problem, IMHO, is that for the most part, the general public doesn't really have enough understanding of this disease process.  There would certainly be more empathy for the caregiver if they did.

Dayn2nite, I wanted to second JoC's thought.  While we haven't always agreed on every issue, I'm so sorry to hear about your battle and what it did to your life.  Thank you for sharing your story.  While you know that I sold my business to take care of my Dad, I don't come close, in any respect, to your financial loss.  I'm sorry this happened to you.  I wish you well going forward, because you really deserve it.     


KML
Posted: Thursday, July 6, 2017 4:41 PM
Joined: 11/30/2011
Posts: 2067


My sibling told me in November that I was unsupportive during the sale of my parents' home.  This felt like a stab in the heart.  Sibling told me she does not want to have any contact with me.

I took care of my father for 12 years.  I cleaned his home, cooked for him, took him to doctor appointments, kept him socialized, visited him, shopped for him, picked up prescriptions, did his laundry, made sure he had clean clothes, and all supplies he needed, I kept his hygiene up.

Because I wasn't jumping up and down gleeful and happy when the house was sold, I was unsupportive.  Sibling was executor, I did everything that was asked of me.  Seeing the house sold was sad, it was hard, but I did what I was asked to do, I cleaned, packed things up, gave things away, arranged for furniture pickup. 

Everything I did was forgotten in that one sentence.  The waiting in the ER late into the night, waiting for hospital admits, leaving the hospital at 4am, going home to get ready to leave for work in another two hours, visiting with him, cooking for him, cleaning for him, all of that apparently meant nothing to sibling.  It certainly alleviated a lot of effort off of her non-willing participating shoulders.  I am now forgotten and treated like I no longer exist and labeled as unsupportive.  She has spun her own reality and has disowned me. 

I didn't speak and talk about what I had done for my father to other relatives, kept it to myself and did what had to be done, so they don't know.  Sibling has a way of shining, coming in at the last minute to soak up glory.  I don't understand a person like this.  Sibling talked about inheritance while my father was alive and what she would spend it on.  Made me sick hearing that.

 

Day:  I'm very sorry for your struggles.  You deserve better.  You can hold up your head high, it's not easy doing the right thing.  I just wish that the good people can catch a break and that the universe would make things easier on those so deserving.  I'll keep you in my thoughts and prayers.

 


MPSunshine
Posted: Thursday, July 6, 2017 5:06 PM
Joined: 5/21/2016
Posts: 1582


Oh, KML, but now I know. My heart flies out to you because instead of boasting or over-blowing what you did, you simply did it. 

Dear Heart. How I wish the world worked that those who cared the most got the most.

Instead those who boast the most get the most and that just plain sucks.

Take care, because I know. And all the others here reading and those who have cared, we know. I do not forget. Your dad did not forget.

dayn2nite2, so sorry that this is the way it is for you.

MJ, yup, there are folks who know it.

bela, good that you posted.

Tay46, has it gotten any better for you?

JoC., His Daughter, I wish things could be different, better.


His Daughter
Posted: Saturday, July 8, 2017 8:59 AM
Joined: 6/25/2014
Posts: 1710


KML,  I am humbled by your 12 years of care.  Mine was only 3 1/2 full time, and I had help.  But I certainly understand your feelings.  I also had horrid siblings, filled with a strong sense of entitlement, yet not an ounce of compassion or gratitude.  Unfortunately, this senerio happens more often than people want to believe.  

And this is exactly why, I encourage everyone to be very careful when writing our own wills.  While it has often been the common thing to write share-and-share-alike documents, that leaves little thought to the caregivers sacrifice.  I'm really sorry your siblings were so cruel and self centered.  But your parents made it easy to ignore all you did. I truly believe that for caregivers who understand this experience, we should be providing something extra in our wills for that person who stood up and protected us.  This might have been a reminder to your siblings, that your spirit and help was very much appreciated.  If not by them, that it certainly was by your father.    


kellly
Posted: Thursday, October 5, 2017 10:49 AM
Joined: 6/12/2015
Posts: 50


KML, I read your heartbreaking post about how you have been cast aside for not being an emotional caregiver to your needy sibling, too. All I could think of while reading was that you might consider sending your sibling a letter outlining all you did do, just like you told us here. Don't expect it to have a healing effect on the sibling, because it probably won't, but sometimes we need to do something that helps US instead of someone else. Getting it out there, telling your sibling what you DID do with no hope for thanks and then how hurtful it was getting pounced on for not stepping up the way the sibling expected you to do might be therapeutic for YOU. I guess if you don't want to offend the sibling, you could always write it and then just rip it up.

Just a thought.


KML
Posted: Thursday, October 5, 2017 11:35 AM
Joined: 11/30/2011
Posts: 2067


Kelly:

Thank you.  My sibling knows what I did for my parents.  I don't understand why this is happening, and I probably never will understand the reasons.  In spite of how I've been treated, I still wanted to preserve some kind of relationship with my only sibling.  Things became stressed and strained during the times of taking care of our parents, most especially my father.  I thought it was that, but after his death, the cloud of  her distancing from me got heavier.  I have written a letter to my sibling telling her I love her always and I remember the kindnesses we did share over the years.  That letter was sent back to me "return to sender" in her handwriting.  My letter was preceded by hers, telling me she wanted no contact with me whatsoever in very detailed examples.  I worked up the courage to send my letter, only to have it returned.  I've had to see a therapist regarding all of this to have someone to talk to, it's on my mind all of the time and is tormenting.  Talking to the therapist has helped, but I realize that this will always be with me.  I've been reading about sibling relationships alot, too.  Family history has a lot to do with it, birth order and all of that stuff.  Just trying to figure things out and how to go from here.   It's like a death, except the person is still alive.  How strange it is to see her driving down the street, and not being able to blow the horn and wave "hi".  Holidays coming up, just stirs up all of the losses I feel.  It's just sad.


kellly
Posted: Wednesday, October 11, 2017 3:52 PM
Joined: 6/12/2015
Posts: 50


Wow, I have no words. "Return to sender" is just cruel. I hope you manage to weather the holidays in a way that is meaningful to you and not continue to be hurt by her rejection. I can't understand what would make someone be so heartless and lacking in compassion. I hope you can continue with your therapist and get helpful support to come through this without feeling like it had to be something you've done that caused it. It might not even have much to do with you at all. Hang in there. With time even the hardest things recede from view somewhat as more current issues take up more attention. You have friends here and people who care.
KML
Posted: Friday, October 13, 2017 4:06 PM
Joined: 11/30/2011
Posts: 2067


Thank you, Kellly, you're very kind.  Best to you, as well.
 
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