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I believe this. I have only been a caregiver for 4 months and I'm sure she will out live me. If stress and guilt don't kill me then the anger will.
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I believe stress causes us to become ill, I started taking care of my mom who moved next to me 3 years ago without help from three out of four siblings. One sibling visits once every two months out of guilt. Two years ago I was diagnosed with breast cancer and went through chemo and radiation still with no help. I now have to see a cardiologist fir heart palpitations. My 55 year old brother was just diagnosed with cirrhosis from alcohol abuse and is hinting about coming to live with my mom. I certainly can't take care of both of them, it would kill me!
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I take care of mom , my sister Gerilyn died August 10, 2013sudden cardiac death she was 49 . Geri and I were RNs at the same hospital , now it's just me . She and I split up mom and dads care we had it under control. Geri passed away and I am alone taking care of mom and dad . They are divorced so dad lives in his own house he has colon cancer and I take him to his appointments and mom has arthritis , CHF , fracture of her thoracic 12 fx from arthrits and bloodclots in her right leg she has a ivc filter placed , the kicker is she had mild to moderate dementia which she gets stubborn and won't walk ughhh.. I work 3 12hourshifts a week I am a rehab RN and I have caregivers come check on her with the vouchers I can get which dosent last long .i do full duty when I'm home and at work ..I have one brother in calif that will send me money once in awhile but I pay everything for mom. I have psoriatic arthrits and just deal with the pain ,I hate going to the dr I spend enough time taking mom to her appointments and then working with them . I take Tylenol and Motrin and deal with the pain. I don't sleep well and worry about mom .. I am 53 and I gave my 3cats to take care of mom and I have ,lived together for 20 years she retired as a RN at age 70. I. never married and no children. So you see it's just mom and I .i never buy anything for myself and always try to buy things to make mom more comfortable . I eat whatever and my main concern is mom .my grief over my sister's death is still raw and I cry myself to sleep I go to work and do what I need to do to keep a roof over the cats paws !
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This isn't a good way to live ohmeowzer. I think you already know that. It seems as if a grief counselor would be a good idea. Your sister's death was a horrible shock. Something like that is hard to get over. Many of us need help with our grief. Please try to improve your life by getting some help. You deserve that.
Carol
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Recently while roaming around the internet I found that 30% has now risen to 40%.... and if you are 70 years old or older and caring for you elderly parents, that figure becomes 70%. Oh my gosh, those odds are terrible :(

Now I understand why my parents [mid-90's] will probably outlive me.
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Thank you carol I know I needa grief counselor , I keep very busy because I start thinking of my sister I can't believe she died . When she died apart Of me died when we're very close and we could handle anything now I'm alone and miss her so much . I live off of my grief I don't drink or smoke I just Work and take care of mom and dad and care for my kitties . I buy all of dads groceries and use my money and the rest goes to bills and moms care . I take them both to Drs appointments and really I a, so sick of Drs the last thing I want to do is go to the dr ughhhhh . I will look for a grief counselor that's close to,the house .. I just never stop at work or home because then I think of my sister . Thank you for helping me
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I'm so glad that you are willing to do this, ohmeowzer. Freqflyer is right about the statistics. It has gone up to 40%. We don't want you to be one of them.
Please keep us updated on how you're doing.
Carol
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I will thank you carol ! Thank you for letting me vent I don't ever talk about what's going on . People ask me how are you doing ? I always say good , never the whole truth ... To much to explain
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ohmeow - grief groups can be incredibly helpful. You are carrying way too heavy a load. Busy-ness instead if grieving does not work well. he grief eats away at you anyway. Do your parents not have any income that you can use for their care? You need some "me" time to process your feelings and give your mind and body a break. Please do something good for you each day! (((((((hugs)))))

ff - thx for the updated information. I knew about the 40% but not the increase to 70% over 70. I am assuming that refers to hands on caregivers, but even as a distance caregiver I know there is a toll on my health and those figures make me even more resolute to look after myself. I do have a couple of non life threatening health conditions which affect my quality of life. These have been exacerbated, if not caused, by the stress of caregiving a mentally ill mother. All the more reason to look after one's self. You deserve a decent retirement. I know it takes work to keep distancing yourself against those who do not understand - in my case not only my parent but also the facility staff who are not very aware. But it is worth it to preserve your own life. (((((hugs))))) to you too. Are there any geriatric managers in your area who could be hired to help?
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I should add there are times when, for health reasons, I have just said, "No, I can't do that." An alternative has always been found.
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My brother is 90 and is caregiver for his wheelchair bound wife who is 91. He refuses any help or break from his "duties" and won't consider putting her in nursing care. We fear he will kill himself taking care of her. What can we children do to convince him to accept help? We are ready and willing to pay for care so cost is not the problem.
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Sadly, you likely can't do anything unless he has an old friend who can talk some sense into him.

It's wonderful that you can pay for his wife's care and he needs to know that, but many of his generation do feel that it is their duty to provided the care even if that care isn't as good as others could provide or if it kills the caregiver. Unless he has has severe cognitive impairment, he has a right to this decision.

I wish I could give you a different answer, and maybe someone else has one. I don't. I think if you force anything that could kill him, as well.

It's got to be terrible for you to watch this, so my heart goes out to you.
Carol
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Thanks for your reply. My brother is in good mental health except for this stubborn streak. I hope I am as hardy as he is when I'm his age. But I would accept help!
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Good for you! I wish he would.
Take care,
Carol
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I cared for my mother 10 years with the help of my Dad, but 2 years ago she turned violent. The trauma of watching my mother decline, and the process of institutionalizing her, led to my Dad being diagnosed with Alzheimer's. My dad turned violent too, often hallucinating. I went to the ER once a month with one of them, except for a 10 week period during which I went every week. I am single & have no siblings. My mother passed away in Feb of this year. My father continues to decline in the VA home. My health has declined, and I wonder how it is that still alive. I don't want to be. I can't take the physical demands anymore,but Dad is still here and no one visits him but me.
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You can continue to visit your dad when you can, but it seems to me that you've given all that you can and more. It may be a good idea to see a counselor so that you can regularly talk about all that you've been through as well as learn to understand in your core that you don't have to give your life to care for your dad, now.

Before your parents' declines, they would have been horrified at the thought that their care would have put you in this position. Try to remember who they were and that they'd want you to get healthy.

Put your health first. Yes, visit you dad, but don't consider that your main responsibility. Your main responsibility is to yourself now.

Please update us on how you are doing.
Carol
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Carol,
Thank you for bringing this alarming and frightening statistic to the forefront. More research needs to be done on helping caregivers through their long battle and journey, It seems that there is too little federal support for research on caregivers.
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Throughout the years I've seen improvement in awareness and even resources for caregivers but there's such a long way to go! I'm noticing that caregivers do get some attention when a loved one is in the hospital, but it's still lip service. Practical help just isn't there. More states need to get on board with PACE and other programs that can help with financial and medical support for our elders. Also, what is glibly called custodial support is basically unfunded and that is what takes so much time. The assumption seems to be that family members can quit their jobs and spend 24/7 as caregivers. They do - but to their own (and our economy's) detriment. I appreciate your input ADCaregivers.
Carol
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The availablity of resources for caregivers is improving. When I started caring for my Mom with AD four years ago, there were a few different sources for help. But, I remember someone suggested I call the Area Agency on Aging to find out about help for me. I was quite frustrated with that call, at that time the majority of resources for me were related to helping me find assistance for my Mom! And just about everything required that I have POA for my mom in order to tap into any of those services. So, help was non-existent as sib with POA was in complete denial over Mom's disease and Mom had resouces. There is so much that could be done to make things easier for caregivers.
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My husband isn't an elderly person, but he has been sick with severe necrotizing pancreatitis for the past 9 months now and I, as his wife, am the sole caregiver. I agree with the article above. I put off my own doctors appointments, even though I have a lot going on in my own body. I go to church to get a refill on strength and pray. However, sometimes that doesn't seem to be enough. Unfortunately, my main times of catching up on rest is when my husband is in the hospital for a week or two.
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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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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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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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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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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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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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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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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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Well, make that six years now. But who's counting? :)
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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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