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Rough statistics show that 30% of caregivers die before those they are caring for. Some studies show deaths higher. Illness that doesn't lead to death is rampant, as well - depression and auto-immune diseases are high on the list. Caregivers often don't find time to go to their own doctor appointments. They put them off, because they are too busy, or are just plain sick of sitting in clinics with their loved ones. Then things like breast cancer, which could be caught at an early stage, aren't found until the illness is much worse or even life threatening.


Caregivers are as important as the people they care for. If they abuse their bodies, minds and spirits while caring for others, no one wins. Support for caregivers means we must tell our stories and know we are heard. I hope we'll hear many stories on this site.

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Barb, that is so sad when someone that young passes away. It will be interesting for you to see exactly what happens next in regard to their Mom. Too bad they didn't think about this a year ago :(

I am at that age where I read the obits in the newspaper, and I have seen too many times where a person in their 50's or 60's had passed, and the survivor includes an elderly parent who lives in the same city/town, and the siblings are elsewhere. Make me wonder if that grown child had been the caregiver.

I remember when my parents told me that I would be getting a nice inheritance. In turn I told them to use it for themselves as they would probably outlive me. They looked at me like my hair was on fire. They had zero clue about the stress I was under !!
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I went to a funeral today; a 49 year old man (who had some challenges with alcohol, etc.) who lived with him 90 y/o mom in her big suburban house. He worked part time as a plumber's helper.

His siblings constantly harped on the fact that he was "mooching off her".

He died of a heart attack last week. The other 5 siblings are now trying to figure out "what to do with mom".

I think they are going to find out in short order just how much money and grief their brother saved them.
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Oh freqflyer I am so worried that I will die before my 92 soon to be 93 year old Mother. Or die first because of esophagus cancer my husband has.
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Even though both of my parents had now passed, my Dad was almost a year ago, I find myself still ignoring my doctors appointments. Bad habit or I have gotten lazy. Maybe I just don't care anymore :P I am 70, and was caring for parents in their 90's who still lived in their house which had a lot of stairs, refused caregivers, and kept saying "we can manage"... until the phone rang at my house saying someone had once again fell. I was in panic mode each time that darn phone rang !!

While caring for my parents, not only did I ignore my own doctors/dentist, I also ignored that of my cats. They missed many a "senior wellness exam" because taking a cat into the vet takes nerves of steel, and my nerves had been unraveling over those 7 years of helping out my parents.

It is so hard to find ones "new normal" after being a caregiver. I don't know how people do it being hands-on living with a parent. I was totally exhausted being a logistical caregiver.

I also have seen articles saying the rate is now 40% for caregivers dying leaving behind the love one they were caring.
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I imagine that your friend sees the older couples so the statistics would definitely go through the roof. The overall rate seems to be close to 40% now but souces differ.
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I was informed by a friend who works with memory care patients at a nursing home that it is 73%
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Just an update from my March post. I have been through radiation treatments in March. I ha e now been tbrough 5 chemotherapy sessions, number 6 is next week. My CT scan 4 weeks ago show the tumor has shrunk almost 50% in thickness. Keeping my fingers crossed. I am still the only caregiver at home and now everyone thibks tbat all is fine as is because the tumor shrank. I have finally put my foot down and hopefully will have help soon. The province will pau for self managed care as long ad my spuse does not refuse. That is the battle. I am also still working full time. Wish me luck.
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I just had a friend die at 78 who had been caring for her husband for many years. The last thing I heard from her was "This is too much work for one person." Some times those of us who are care givers must set firm limits on what can do and be firm about the help we need from others. The family had plenty of money so could of afforded to pay for additional help. This was a premature death IMHO as woman was in apparent good health just overworked.
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I fully agree, I am a caregiver. I get up and go to a gym class Tues and Thurs early in the morning. It keeps me sane. Once a year I go with my granddaughters on a long weekend to a hotel in the mountains with a pool and hot tub. Next year I am going to Europe for a week. This man refuses to vacation with me over the years. Ill be dammed if I give up the rest of my life for a jerk who put everyone else before me.
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Prayers, Marialake. Please let us know if you have any success. We are on your side.
Carol
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I'm so sorry, CindyCBlair! Sadly, your story isn't as unique as some would believe. The body (and mind) can only take so much before breaking down in some way. Please keep us posted on how you are doing.
Carol
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Ive been taking care of my parents for 6 yrs,3 yrs in i was diagnosed with Leukemia ,my doctor said It was from stress.
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I sooo agree with JesseBelle about family help. Government respite should be the last line of help. If it wasn't there at all.............family would have to step up and it would do them all some good. We need to get tougher and tell family how to help rather than waiting for them to offer. If nothing else, it would be nice if they offered to pay for something. Since they don't offer, we need to let them know that expenses must be shared. Have I done any of this? No. Clearly, I am a wimp...............but about to exercise some muscle. Pray for me!! lol
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DMD; I'm so sorry!
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I agree, Captain. We all die. However, when we skip normal checkups that could keep us healthy for years to come because we are neglecting ourselves while we care for others we aren't doing anyone a favor. Common sense applies here as in most things. As a person who has no desire to live to some record setting age - I just want to age fairly well if possible - I use your line frequently in my writing. We all die. Fighting to keep a 90-year old who is miserable "alive" makes no sense to me. That being said, a 50-year-old with a fatal disease that could have been prevented earlier is deeply saddening.

I enjoy your comments!
Carol
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100% of caregivers die eventually . i knew one who was killed by a coked out rhino with a machine gun taped to his horns . rhino lives matter . he couldnt breeve . pants up , dont loot , and so on .
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DMDIDs, I am so sorry to read this. We caregivers never realize the importance of caring for ourselves because we are so wrapped up in caring for others. Usually when we read others stories it is not like yours. Thank you for telling us your story, maybe it will help some to understand why it is so important to care for ourselve and if we have health issues we need to pay attention. In fact, I can think of a few posters here that your story will help, if they would listen.
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DMDIDS1, I am so very sorry. Fifty-one! It's hard to comprehend. Your story should be on a poster for caregivers.

Tragically, your diagnosis is more dramatic than most, but skipping our own appointments is high on the list of things caregivers do that we shouldn't do. I did a lot of that and I still tend to put my own appointments last on the list. I must mend my ways. You are helping many people by going public with this.

Your point about the fact that finally everyone is worried about you - the caregiver - is well taken. Somehow, we are just considered the strong ones who can never go down. Well, we can. And that leaves everyone else without our help.

Please check in from time to time when you feel up to it, my friend. You have our heartfelt prayers.
Carol
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I forgot to mention, I am only 51 years old. This really sucks.
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Well Carol. I have been taking care of my spouse who has MS. He has not been able to even stand on his own for just over 2 years so the amount of care has increased. Of course, nobody but myself notices this as it was a gradual change. I ignored what I though were minor health issues as I didn't have the time or make the time to go to a doctor. I had problems swallowing food which started early December 2015. I finally went to the doctor. I just found out last week that I have stage 4 adenocarcinoma of the esophagus and have been told I may only live 9 to 11 months if I am lucky. Now finally everyone is worried about me. I still have to work full time and I start radiation therapy this week. I do not have enough life insurance to take care of my spouse when I am gone and now all I can worry about is them having to be put in a home and have strangers take care of them.
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JesseBelle, you are correct that this is the truth for far too many families. One person takes on the care, so the siblings feel that everything is just fine. Or even worse, they criticize but don't help.

I agree that this is a huge problem. However, many people don't have families who could help or anyone else to turn to. Or even if families do help, they all have jobs, they are all trying to get along. Help is limited.

We desperately need, at the very least, some way for reliable respite care. Some communities have block nurse programs and other programs that are marvelous, but many have no options. Few have enough.

I don't know the answers but it seems to be a world-wide problem so no health system or social system has this worked out at this point. We can all hope for better.
Take care, JesseBelle. You are such a valuable resource for us.
Carol
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Well, make that six years now. But who's counting? :)
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Carol, what bothers me more than lack of government support is the lack of family support. I've been with my parents five years now and no one has ever asked if I was okay or if I needed any help. From what I read here, that is very common. It is almost like the non-caregiving world is very grateful for us because it means they don't have to be involved. To ask us if we're okay would risk that they would need to get involved, so they don't. We really can't blame the government for not providing more help to the caregiver when the families don't even do it.
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Wherever we live it seems that caregivers fall below too many other concerns. I will say that through the decades that I've been involved in caregiving, visibility has shot way up. When I first sought to have my book published I was told by one agent that she loved the book but "no one was interested in this topic."

About a year later, the whole topic of caregiving exploded. Still, it's been an uphill battle and will be for a long time. There is nowhere near enough support. Caregivers need choices. They need respite. They save whatever government they are under billions of dollars each year. Yet squeezing some services out of the tax payers seems like - if I may use the old adage - getting blood out of a turnip.

We need to be grateful for some changes but there is so far to go that for many any help will come too late. Many of us have been financially devastated as well as physically affected by years of caregiving with no assistance. We need each other desperately for many reasons but support may be the greatest.
Carol
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We have that too in the UK. While taxation raises the eyebrows of so very many - the only way to support the caregiver is to either offer respite or something financial where they can access their own support and that costs. Two things are certain in life: death and taxes. So please don't let your brain think oh no not higher taxation think YES at last they recognise we need their help.

Oh wait I am living in cloud cuckoo land they would want to to give the money overseas? Well that would be about right!

I have always said (and I did used to work honest I did) that I would rather pay a few £s more tax and have a police service and a health service that was effective than I would have more money in my pocket and no money for my health or safety later in my life when I will depend on these services.

The NHS in the UK was sold to many by using the term caring from cradle to grave to keep you above the national minimal standard. I get 96.00 a week BELOW that.... you go figure how much a caregiver is worth to the state...... may be it is billions but they don't give a damn as long as we do it .....and if we die earlier?Well thats good too because thats one less to worry about. It does annoy me that I am considered utterly worthless by our country - I just wonder how they would cope if we all notified the social services we were not going to do any care on Monday!
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Ann, I totally agree. And I truly believe that those who are caregivers, paid or not, have to have something very special within them to do it at all... as an unpaid caregiver for my Mama..a lot of my extended family have the perception that I am here...simply because I don't want to work !!!!!!!!! OMG...go figure that one out...
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Forgive me if you think I am preaching to choir.
Caregivers don't get enough respect from society in general and often not enough from those around. The amount of unpaid labor that men and mostly women could to the economy is about 50% of Walmart's annual revenue-billions and billions.
Medicare would be bankrupt today or much sooner if it has to pay for all that unpaid labor.
The problem is that our nation perceives caregiving as an occupation that one does when lacking the skills to do other work. You have to become a CNA, LPN, etc. to be deemed qualified to be a caregiver. Given my experience with very low-paid caregivers is that they don't fit into many homes; a cultural mismatch. Yet that is the first question many prospective clients ask when they contact me about my services. Many unpaid caregivers do a far superior job of caring for their loved ones than the commonly available caregivers found in so many areas. Of course, there are exceptions to every rule. But not as many as one might hope for.
Best wishes for the holiday season. Ann
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Oh I know I know, the only time I had a rest was when both my parents were in the hospital & that was the summer of 2013. My husband and I went to see fireworks that summer after visiting hours were over. Still think of that day. Sad!! but true.
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jkboatner54, please keep in touch with us. What you are going through is terribly hard and we understand your feelings about your only times of rest. Really - we do hear you! This can be so hard. I'm so glad that you have your church. If you are close to your pastor or priest, you may want to schedule some time to talk. Whatever you do, don't feel guilty. You are in my prayers.

Carol
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Even now with my Mom safely tucked in at a nursing home, and my Dad having Caregivers, I still am stalling at seeing my own doctors. Oh my gosh for some of them it will be almost two years. I know my Oncologist will give me a good lecture that I need to see her more often. In a couple of weeks I can't use the excuse that I will wait until after the holidays. Oh wait, what if it snows :P

But any time I did schedule my own appointments I usually had to cancel them because Mom or Dad had a medical emergency, so I got gun shy about re-scheduling.

And there is the time when one is dealing with two parents and their many doctor appointments that you feel like you will scream if you see yet another waiting room !!
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