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Caregivers Who Have Lost Someone
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.
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 ????
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.
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.
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.
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.
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.
Thank you for your kindness and generosity of thinking of someone you don't even know. I know what you say is true. It does take me awhile to accept certain things and this is something I can't find an answer to and accepting it has been a long time coming, I am beginning to accept it as it is. I do pray for my sister, I do continue to love her, but I am learning to accept that her feelings towards me are not the same or what I would like them to be.
It does feel like a death. I have survived my mother's and my father's deaths and I will survive this, too. It's a painful process, but I can't allow myself to dwell on the loss, and let everything that is good pass me by.
Thank you, again, for your encouragement and thoughts. Blessings and peace, to you, as well.
I think there are many of us with similar thoughts. If I live long enough, I will almost certainly get Alzheimer’s. So many people in my family having died with the disease. I plan to get a DNR bracelet. My father’s family had lung issues. If I don’t treat those lung issues, watch my pennies, substitute teach, and sell some things on EBay, I might be OK, financially.
I might avoid Alzheimer’s myself. If not, I will have to make a difficult choice, as I doubt that there will be any Medicaid left by that time.
I was always busy bicycling and hiking before I cared for my parents. When you’re active enough, you have a certain number of accidents. With any luck, I’ll go out of this world, enjoying something I love.
Every year, Alzheimer’s disease costs our nation
an estimated $259 billion, according to the Alzheimer's Association. At this
hopeful moment, when there is more momentum than ever towards finding a cure
and treatments, let’s also remember the desperate need of caregivers.
is a strange, sad irony that so often, in the territory of a disease that robs
an individual of memory, caregivers are often the forgotten. Without them,
those with Alzheimer’s could not get through the day, or die -- as my husband
did -- with dignity, surrounded by love.
~Karen Wilder~ Wife of late actor Gene Wilder
I haven't posted in this section before, my LO died in July. What draws me here today is the rawness of the issues spoken about. I have thought about writing an article with no idea what to do with it.
I consider myself an upbeat, cup full type. Secure in my life, marriage job etc. I have many acquaintances and friends mostly through family here in town and church.
But... from the time my husband was diagnosed till he went to Glory, only 5 years, I saw maybe 3 people a month in my home. It was the loneliest time of my life. (I did do a bible study at my home the last year, so I would not be resentful) 8 ladies came every other week, for me they were lifesavers.
If I went out, it was a quick run, no time for visiting. What was amazing was I told others how hard it was, especially after he stopped talking, but I still was alone!
I have made it my business now to visit the shut ins, I guess I need to do what I wished others had. My neighbor, who knew, but never visited said to me " Oh, I was so sorry when I heard, I should have visited" I looked at her and said "Yes, you should have."
I am so thankful that we were younger than most, early 60's. I cannot imagine what I would have felt like if I needed to go through this in another 15 years.
So, you are not alone in your grief, nor are you alone in what feels like betrayal of family and friends. These are things I am sharing whenever possible. I do not want bitterness in any part of my soul.( Holding everything tightly will open the door to that.) Blessings and much understanding, sharon
My love and prayers to all of you. I lost my dad Christmas Eve 2017. After 3 weeks fighting pneumonia, he went back to the VA home. We had a nice 3 hour visit with his little dog and he passed away the next morning with possible heart failure. He has irregular heartbeat all his life.
I haven’t had time to grieve him, really. His Va account has to go through probate and just determining that required several phone calls and two weeks. Every bureaucrat at the VA, my bank, and the law firm had a different instruction or demand.
Now the VA is also demanding a final accounting report to be completed 5 days before I received their letter. They close at 4:00 pm and I can’t reach them during the day when I’m substitute teaching. I’m on hold too long.
I’ve had constant migraines, 15-25 a month, since my parents became violent, 5 years ago. Like many other teachers and subs, I’ve had the flu. I get called at 5:30 am to substitute, teach until 3:30, go home and work on VA or probate requirements, or pay bills, look for a full time job until midnight. Take migraine medicine and start over the next day.
I know I probably sound whiny, but my parents were sick 12 years. We’ve all commented about the disease. I understand that. What hurts me is he bureaucracy. Why can’t these angencies give me a chance to grieve and regain my health? Well I know why. They all want their money and to justify their jobs.
This tortuous disease will never let go of me until I die. These bureaucrats won’t either. Sometimes I don’t think it matters at all what I do now. The outcome for me will still be horrible, and now I don’t even have either parent that I can hug. They were sick, but I could at least see them, hug them and see their smile. I could brush their hair and watch them play with the dog. Now I have nothing except these horrible bureaucrats.
I’m so scared now. I expect disasters now. Before this, I wasn’t afraid of life, but now, I’m afraid, every time the weather turns bad. I expect the worse, because for 12 years, every situation has ended with the worst results. I’m becoming somewhat agoraphobic. I hate to go out anymore.
I don’t know whether to trust my perceptions or not. I don’t get enough sleep, and I’m having more and more difficulty functioning. Have any of you felt like this about your responsibilities? I would go see my doctor, but I already have more than I can do.