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Unread 05-31-2012, 06:31 AM
 
953 posts, read 761,004 times
Reputation: 1357
Default How do you deal with it.... when no one understands?

Caregiving has come to me at a younger age then most. My parents were still healthy and working when catastrophic injuries/illness suddenly hit in their 60's. My life has been on hold ever since, taking care of them.

My father suffered horrific injuries after being hit by a taxi. Within a few years, his issues began to stabilize with severe disability, and then my mother suddenly was struck with widely spread cancer. Another horrific year+ of fighting/chemo/illness before she passed away. My father declined more in this setting.

None of my friends have lost a parent. None of my friends have a disabled parent. None of my friends are caregivers for a parent.

How is this possible? How can I be the only one?

It is very isolating. Nevermind the fact that my life centers around my father's appointments and care, that I have moved to my parents' community away from my own ..... But I have also become a freak outsider in my circle of friends.

No one understands. In fact, I sense that people run from me in fear, as the tragedies in my family remind people that no one is safe, and everything can change in an instant.

It is quite cruel. To lose your family, and then lose your friends in this way.

I have started to have a hard time relating to people... ."normal" people.... people who are still ignorant about what the future may hold for most of us. Their concerns/worries seem so insignificant.

At times I know what they are thinking.... "Can't you just put them in a home? What are you doing?!?!" ... Some will say it out loud, others will hint it. People can be a little cold and "objective" when they aren't talking about their own family.

But this just shows their own ignorance.... of what they would want for their own parents.... of affordable options... of how poor care is EVEN if you can afford to pay for it.

So I have stopped talking to them. They don't want to hear about it, so if they ask... everything is "fine". But they really don't call anymore anyway.
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Unread 05-31-2012, 09:28 AM
 
Location: The Great State of Arkansas
5,858 posts, read 9,862,006 times
Reputation: 6904
They don't call because they don't know what to say. And they choose to remain ignorant in the misguided hope that it will never happen to them or their loved ones. It is so much easier to say what should be done until you're the one in the barrel.

Although it is easy to be upset, people really can't identify with something they haven't experienced for themselves, close up and personal. Like trying to explain love or a near-death experience. No way you can get it until you've been there.

Someone has to be the first in a clique to go through something - the others will follow - you may unwittingly be the benefactor of all knowledge shortly, as we in this position seem to get to learn things we never had any desire to know.

Please know you are among friends here...many are going through the same situations, trials, and triumphs. And many of us - most of us - know what "on hold" means, no matter what age we are.

Prayers to you as you find your way in unfamiliar territory. It is a daunting task.
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Unread 05-31-2012, 10:50 AM
 
3,578 posts, read 2,687,802 times
Reputation: 4646
Have you considered joining a group of "caregivers"? I know they have one here which the hospital sponsors where people get together with others who understand. I agree with the above post in that people don't know what to say. I knew someone whose very young wife was diagnosed with MS and one day we asked how she was doing and our boss asked "I hope you don't mind us asking?" He said "I appreciate that you ask as none of our friends do and they don't come around anymore. It makes me feel better to be able to talk about it." I care for our adult son with Down syndrome and it is very hard and no one understands. Most people just think I should put him in a program and live my life but easier said than done. He was in a program that turned out to be a nightmare and I am searching for a good program but it will still require my constant intervention to make sure his needs are met. Some days I would like to just walk away but that is not an option but for other people, it works! I have a conscious, darn it! I would encourage you to look for outside help though and make sure you take care of yourself. You should have some kind of backup plan in your mind should you need it. We can do so much as we all have limits.
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Unread 05-31-2012, 10:52 AM
 
4,922 posts, read 5,021,289 times
Reputation: 5516
Your situation is a difficult one. I applaud you for caring for your parents Yes, we all know, care in institutional settings is poor to dismal. How old are you, if we may ask?YOu have to consider yourself as well.

I've known many who have successfully juggled parents and their own life, but its not easy. Perhaps you have "scared off" your current circle of friends because your situation threatens them, or perhaps it makes them feel guilty, all the times they've turned their backs on someone in need.

I don't know what your insurance/financial situation is, but you might look into outside caregivers, especially for doctor appts, etc. I KNOW how that can be. About 2 years ago, I fell and broke my spine, and was unable to drive for more than a year. Someone had to get me to doctors, etc, usually dh. I know that put a strain on him and his job.

Check into companies that provide caregivers. Perhaps you can find someone who can drive them to appts, etc, for a fee, of course, but its better than putting your own job in danger.

Your parents aren't getting any younger, neither are you. Start now to look into residential care options. It takes time to get in, even into the "bad" ones. You don't want to be like many who are suddenly faced with an elderly relative who must be placed in a home in 48 hours


For yourself, well, I imagine your current circle of friends have been your support and listening ear while you were going through your parents problems. We all need to talk, vent, etc, but perhaps you have just worn them out. Maybe take up a new hobby that involves new people. You will have the new hobby as "glue" to hold your friendships together. Perhaps, genealogy, golf, cards...........well, you get the idea.

Also, bear in mind, many older, disabled people reach a point where they prefer to be in an institutional setting, if its a good one.

I realize my suggestions might not help, depending on your situation, but be aware many are in your shoes, bless you for taking care of your parents
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Unread 05-31-2012, 12:47 PM
 
Location: 500 miles from home
8,847 posts, read 3,495,419 times
Reputation: 7355
Quote:
Originally Posted by sfcambridge View Post
Caregiving has come to me at a younger age then most. My parents were still healthy and working when catastrophic injuries/illness suddenly hit in their 60's. My life has been on hold ever since, taking care of them.

My father suffered horrific injuries after being hit by a taxi. Within a few years, his issues began to stabilize with severe disability, and then my mother suddenly was struck with widely spread cancer. Another horrific year+ of fighting/chemo/illness before she passed away. My father declined more in this setting.

None of my friends have lost a parent. None of my friends have a disabled parent. None of my friends are caregivers for a parent.

How is this possible? How can I be the only one?

It is very isolating. Nevermind the fact that my life centers around my father's appointments and care, that I have moved to my parents' community away from my own ..... But I have also become a freak outsider in my circle of friends.

No one understands. In fact, I sense that people run from me in fear, as the tragedies in my family remind people that no one is safe, and everything can change in an instant.

It is quite cruel. To lose your family, and then lose your friends in this way.

I have started to have a hard time relating to people... ."normal" people.... people who are still ignorant about what the future may hold for most of us. Their concerns/worries seem so insignificant.

At times I know what they are thinking.... "Can't you just put them in a home? What are you doing?!?!" ... Some will say it out loud, others will hint it. People can be a little cold and "objective" when they aren't talking about their own family.

But this just shows their own ignorance.... of what they would want for their own parents.... of affordable options... of how poor care is EVEN if you can afford to pay for it.

So I have stopped talking to them. They don't want to hear about it, so if they ask... everything is "fine". But they really don't call anymore anyway.
Soon enough ~ they will understand. Right now - they don't have a clue. They aren't weighed down with the responsibility of caring for an aging,ill parent.

I would suggest keeping my group of friends for some light-hearted fun. FORCE yourself to keep in touch or get with them once a month, etc. This can be a zone where you totally put aside your issues with your Mom for a little while. You need that too.

Then find an online forum (there are many of us) OR a local group of caretakers in your area and use THEM to vent, cry, shout, whatever.
Luckily, I have at least two friends (though neither of them live w/their parent) who are going through the same thing.
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Unread 06-02-2012, 10:27 PM
 
12 posts, read 8,617 times
Reputation: 31
Default caring for elders

Those were not friends to begin with. You sound like you are maybe in your 30's. It is a hard row to hoe when you are that young. Just remember, your parents were there for you thru thick and thin, sickness and in health. You will always be able to look back and know that you did everything humanly possible to care for them.
As far as the so called friends, write them off they are not friends. If they were they could or would offer to help, like driving to a dr. or sitting with a parent while you went somewhere.
Those type of people are a dime a dozen and you could pick up on any street corner.
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Unread 06-02-2012, 11:26 PM
 
Location: West Michigan
7,048 posts, read 2,550,301 times
Reputation: 3380
Quote:
Originally Posted by Barrarmi View Post
Those were not friends to begin with. You sound like you are maybe in your 30's. It is a hard row to hoe when you are that young. Just remember, your parents were there for you thru thick and thin, sickness and in health. You will always be able to look back and know that you did everything humanly possible to care for them.
As far as the so called friends, write them off they are not friends. If they were they could or would offer to help, like driving to a dr. or sitting with a parent while you went somewhere.
Those type of people are a dime a dozen and you could pick up on any street corner.
In the 12 years I was a caregiver to my husband only once did a friend offer to spend time with him to give me a break. I honestly don't think that means our friends aren't really friends and I don't think any less of them for them not offering to help me out. I think people are scared off by the very real possibility that to sit with a disabled person, or take them on an outing, they might have to get involved in a bathroom issue. My husband, for example, was wheelchair bound, and needed assistance in this area. As caregivers we learn how to deal with issues like that because we have no choice but to expect a friend to step in and do it is unrealistic. Better to hire a home health aid when you need a break. They are trained for whatever comes up.
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Unread 06-03-2012, 08:57 AM
 
6,842 posts, read 14,741,543 times
Reputation: 6097
Rough isn't it!!!!

We tend to overlook one thing......that's it's a probability that we knew someone in the same situation and we didn't understand their problems either. And now, we are in the same boat. The average person simply has no idea about what you are going through.
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Unread 06-03-2012, 01:55 PM
HDL
Status: "2 Cor 5:20 Praise B2 God" (set 29 days ago)
 
Location: Seek Jesus while He can still be found!
2,472 posts, read 3,414,055 times
Reputation: 6569
Red face This is so true unfortunately

+5 rep points

I didn't have a clue before, but I'm starting to .

Quote:
Originally Posted by Padgett2 View Post
Rough isn't it!!!!

We tend to overlook one thing......that's it's a probability that we knew someone in the same situation and we didn't understand their problems either. And now, we are in the same boat. The average person simply has no idea about what you are going through.
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Unread 06-03-2012, 05:24 PM
 
1,214 posts, read 984,955 times
Reputation: 867
Default Get some older friends

Someone guessed that you may be in your 30s..Whatever your age is, start making friends in the neighborhood and in work with some older people.

They are more mature, more understanding, and have had some experiences in their own lives.

I've been caring for someone for well over 5 years now...Yes, it takes every minute that I have.

But speaking of my situation to neighbors and co-workers - I find the older ones to be more actively "friends indeed, when friends are in need"

They contribute whatever time and energies they can spare...sending meals over, visiting, even lending a hand in emergencies.

See about what home care you are entitled to. And keep in mind that these people mostly only earn minimum wage - so they may be working 2 jobs, and perhaps even going to school part time. They are not lazy...they are exhausted.

If you can get an older person (ask around to everyone) then work out a deal with them. You can get them hired by the agency, but between you and them, you may be able to legally give them a a tax free gift of some type.

It may not be much, but this will help them, and they will return the gesture by working harder. Just make sure it is legal.

That is between you and them..just make sure that it is not going against the rules. And that is something that you can work out with them.

For instance, what are the local rules about baby-sitting?

Also, if you cannot do that, there are other things that you can do to make their life easier...Such as letting them bringing their children by the house after school (which the person I care for loves, as the kids are familiar with their parent's work with sick people, and are often great company for the elderly and disabled, who are thrilled to have young people around for a little while, a few days per week. And if it's an infant, their smile and joy are great medicine).

Also, I believe in many states you can directly hire the aides, and there are agencies that specialize in this - They help you with the tax filings, salary payments, etc...And it saves the taxpayers much money. My aide costs the government agency 1/3 of what a regular agency would charge. It is my contribution to be a good citizen, by saving the taxpayers 2/3 of the normal costs - even though the disabled person that I care for worked and paid their taxes for nearly 40 years.

It's a bit of work at the beginning, but your state's department of aging and disabled can guide you.
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