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I would like to hear people share their ideas and experiences related to this question so that we all might benefit from the discussion.

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You'll find many articles on this subject here on agingcare, most of which have some past discussion. What you describe is very difficult and you've come to the right place for support. Here are a few articles, with discussions, to get you started:
https://www.agingcare.com/articles/caregiving-guilt-stop-feeling-guilty-126209.htm
https://www.agingcare.com/articles/Living-with-Elderly-Parents-Do-You-Regret-the-Decision-133798.htm
https://www.agingcare.com/articles/cope-with-caregiver-burnout-140161.htm
Keep reading and keep coming back. I'm sure you'll get some comments from forum members today.
Take care,
Carol
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I think the main problem, for most caregivers our age, is the lack of awareness going into this role. I was a complete Bambi when I stepped up to help Mom. Completely naive, I thought I could do everything she needed, plus work full time, plus keep up on all my friendships and relationships. Four years later, I feel like I have graduated with a degree of some sort.
Thank God for this site. What would I have done without it? - so many nice people taking out time from their crazy-busy days to help one another! I am sometimes in awe of our member's generosity.
But this should not be a "learn-by-doing" experience. I am thinking that, since we are living longer lives, that caregiving should be part of the high school health curriculum. No one should be surprised at how much work, anguish, and stress caregiving causes. Not to mention the wear and tear on relationships.
To answer crowe's question: I have taken care of myself by figuring out that it takes a "village" to care for a senior. I put my marriage first. I cherish the few friends who did not bolt when I took on this role. I found the best care for my Mom that is respectful of her needs and ours. And I come here often for the support of our forum members and experts because, unless you have walked in caregiver's shoes, you cannot begin to understand this journey.
And that is how I get through my days....
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Lilliput, you've earned a doctorate in boundaries related to caregiving, and other areas of life. I like the idea of educating people in high school about caregiving.
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cmagnum: I couldn't agree with you more about education. Our times are changing and I am really seeing that in all kinds of things now. I am a senior and in a different generation. Some things I am comfortable with and others are hard for me to like or accept. But, that is the way of the world so what can I say.
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Lilliput~ you are right on. The thing I never thought about was seeing the friendships go by the wayside because you are stuck at home. I do have some very dear friends that have been by me though this journey on the phone and in person when we can. But others are just like..well they can't go, they have to take care of her mom" so they just quit asking....or maybe I don't have anything to talk about anymore except my "mom". I used to be the life of the party....now I grew up way beyond my years. But I would not change a thing. Even tho I have to vent sometimes. And YES this site keeps you sane. Even if you just read of other trials and know you aren't alone.
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Hi,
This is a great question. I took on the main caregiver role of caring for my granny while working full time and taking care of my family. It was a difficult task. However, praying and believing GOD does not give me too much to handle help me tremendously. I prayed, cried, and even vented to help me. Dealing with a sick senior loved one it difficult, but at the end of the day, you are helping your senior loved on live life to the fullest. Having a support system in place is needed. If you don’t have family or friends that you can talk to then join, a group as already suggested. In addition, educate yourself about your senior loved one health condition. The more you know about your senior loved one’s condition, the better equip you will be to provide care. Many Blessings and Care from me to you.
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I am a 45 yr oldonly child female. My 84 yr old mother just had a massive stroke. She has survived but is now severely disabled both physically & mentally. She cannot communicate but does understand most things. Before the stroke mom lived with me & my family. I am married with 2 children ages 10 & 13. My mom now lives in the home she lived independently in before she moved in w ith me. It's a one floor condo which is better for her condition since stair are too hard for her.she lives with a companion who is with her 24/7. My issue is that every time I go visit ( which is often cause she's only 20 min away) she makes me feel guilty by crying screaming etc. I know I am doing the best for her. It's just hard because I have to take the brunt of everything. Thanx for listening.
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I have a cousin that had a stroke and he cried a lot...maybe it it just the stroke results. Please don't let the guilt get to you.. Easier said than done. You are doing all you can in an unfortunate situation. Hugs!
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Crowe - one thing I've thought about is how "new" the experience of having parents move to IL, AL, NH is for most people. There is a huge emotional learning curve as most of us have nothing to compare it with. When things are new there often is alot of fear and worry and guilt. Ours is the first generation to really have to deal with this.

When my mom was growing up the only place people got "sent away to" was if they had TB or were insane. Now TB is no scary news and most of the psych. hospitals seem to be drug related rather than old school schizophernia. When my DH was in high school, girls who got preggers got "sent away" (the Edna Gladney home!); when I was in HS, they got sent to the P-school (which had a day care).
Now teen pregnancy is almost routine and no one gets sent away. My point is that over time and with experience our expectations change. For our kids watching & listening to what we go thru dealing with our elderly and the medical & financial maze, will make it easier for them to deal with us and we will be hopefully more realistic in what & how we prepare for living to our 80's & 90's.

For me, the biggest issue in the future is the cost of medical care. We can control our housing cost, travel, personal stuff but we have no control when we need to get something done medically. 1 serious or not-so-serious illness can wreck
your savings. As we well have learned in dealing with our parents we cannot live on social security alone!
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Most of us in the current generation of caregivers walked into this job with little understanding of what we would have to do. Over the years I have learned a lot.
I don't think my circumstances will get any better, but I'd like to remember what I have had to deal with if and when I become demented and disabled. I hope that I can have compassion and understanding for my caregivers.

I don't know if that is possible. Do people who become sick and disabled lose the ability to experience compassion and thus make themselves the only person in the relationship. I have heard that dementia sufferers lose insight early on? I think that means they lose the ability to see themselves objectively. Does it mean that they lose their ability to be compassionate and grateful to others?
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maggiesue: I think that when people are nearing the end of their lives, panic sets in. They have lost mobility, independence, their cognitive abilities, and have multiple health issues. So their world becomes smaller to the point where they are the only ones living in it. My Mom's ability to empathize is nearly extinct. And that causes a lot of stress for me because I am constantly putting out fires. Her sense of proportion is also skewed. The smallest change or difficulty will send her into a crying jag and then communication stops and there is no way to "fix" it.

One thing that would really help caregivers is if each state would have one "clearinghouse" for information and programs AND the necessary forms, etc. When Mom first arrived to live near us, I made so many phone calls. Whenever I called a program, they would just load me up with more telephone numbers. No one could ever tell me how my Mom would qualify and who actually provided the services. Everyone loves to "volunteer" for these programs, because it looks good on their resumes, but very few people want to do the hands on work. All the good suggestions and information I have received have been from the members on this site. Doesn't it seem reasonable that states and the federal government could do the same? A good chunk of my caregiving hours have been spent tracking down services, scheduling and managing staff, and following up to make sure Mom receives the services she is entitled to. For example, why can't the VA A&A application be streamlined? And why does it take months to a year to hear back? I am sure many people pass before they receive the benefit.
That is why I am so leary to suggest to an new caregiver that they call their office on aging. When I first moved here I called ours and got this surly woman who acted as if I were wasting her time. She basically told me that Mom would not qualify for anything....to which I replied, "then why is your organization still being funded?" Then I called the senior center director who had no answers but wanted me to "call back if I found out anything." Then I tried to find visting physicians who made house calls to shut ins....hah, that was fun!
So here we are, relying on one another (thank God) but it should not be this way. Our government depends on that one (and I mean ONE) family member who will step up and take on this responsibility - many times without support or compensation.
And that, my friends, is my rant for the day..... Take care of yourselves.
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