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Switch to Forum Live View The pitfalls of caregiving.......
6 years ago  ::  Jan 25, 2008 - 12:17AM #1
Nomi69
Posts: 6,731
As one who has done about 15 to 20 years of caregiving others...I can tell anyone, that too often, caregivers do not have enough support by others. If one has plenty of money..it may be different. BUT if you do not, it can become a neverending trial, on the body, mind, and spirit of a caregiver. Caregivers desperately need for others to give them respite. To help them with difficult decisions, and even to give them periods of time away completely, from the caregiving role. If they do not receive this attention...a caregiver under the load of neverending giving of one's self....can become extremely sick, depressed, and even worse. My younger sister and I were both caregiver's for our parents(for me, I had alread done caregiving for years)....of a father who had muiltiple, debilitating strokes. AND our mother who had many issues of all kinds. I tried, and my sister did, altho neither of us had good health ourselves, to see our parents thru as long as they could make it. Our father died of pneumonia in 2001.

I had just lost my husband of 13 years, whom I had taken care of(along with my parents, when my sister was not here), in 1999. I had already had to take care of two young grandchildren, for 2 1/2 years, while in my mid 50's. My sister is the only one who would alter her life, to come(she lived 3,000 miles away)and help me....because she knew when she was not here, that the care of our parents all fell on me. We were both completely mentally and physically exhausted time our father passed away. We had been doing this, for the better part of 6 years, for our parents. My sister was so worn out, that she wanted desperately to be free of the caregiving. I tried every way possible to find a way to help her. We were both begging for help that never came. She went into a hospital for a short time, for major depression. She was put on Paxil, an anti-depressant. When she started on this drug, I noticed awful changes in her. Some people have a gene, it has been found, that can cause them to be very inclined toward adverse reactions to it. I even reported it to the therapists she was seeing. It did no good.  My mother was on it too, but for OCD. She did not seem to have as much trouble with it as my sister did.

My sister wanted to go off of it, herself...but when she told the doctors, they told her not to. She and I were both ready to fall on our faces....we were so exhausted. I called every agency in my city to try and find help, spent hours on the phone, to no avail. I tried to get my mother into a nursing home, and she was turned down. I had it on appeal, when she died.  One night in the summer of 2002, something went horribly wrong. My mother, nor my sister had ever been known to be violent, to an animal, much less a person. For whatever reason, our mother slapped my sister(who does not know why). From there, these two, who usually got along very well, and had, had a good day.....went into a physical conflict.....at the end...our mother died. It has horribly impacted three lives....my mother who is gone, my sister, who is ill, and incarcerated, and my own.  All of it has totally worn me out, mentally and physically. Because of the drug, my sister has no memory of the horrible night. She only has a few, that do not help to explain anything.

The judge who convicted(and I must say, unfairly)asked the forensic psychiatrist, if she was likely to ever remember.....he told the judge it was highly unlikely. To this day, she does not. remember. It has all been like a terrible nightmare that has no end. I will never get over it, but neither will she. Neither of us ever wanted out parent to be hurt, in anyway. That is why, I feel compelled to let people know our sad story(without all the  sad details)so people out there, realize just what kind of tragedy can occurr, if caregiver's become overly stressed, bogged down with too much to do, and completely exhausted. I blame the tragic situation, on caregiver overload, and the drug,. involved.I am inclined to think that perhaps without the drug, it may have not turned out as it did...but with the added stressor of a drug that was wrong for her, and perhaps even our mother, everything that could go wrong, that night, did. And it has brought sadness that never ends. If our tragedy can do, one thing, for good, I hope that any of you who read it, take it to heart, how important the issue of helping the caregiver really is. The life you save, could be your own loved one.
"Do unto others as you would have them do unto you".
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6 years ago  ::  Jan 25, 2008 - 11:05PM #2
katy66
Posts: 216
I am so sorry to hear about your mother and sister. My prayers are with you and your sister.


My sisters and I have been caregivers for our mother for over 2 years now and it is really getting to be a burden. We have a professional caregiver for 7 hrs monday thru friday but the rest of the time it is up to us. Mom has had a stroke and is bed ridden. It is getting harder to lift her and keep her cleaned up and now she won't eat some of the time.

I and my brother want to put her in a rest home but my sisters don't think that she would get adiquate care. I don't think she is getting adiquate care now. We are not nurses and we don't know what to do a lot of the time.

May God bless you and yours
Katy66
Blessings,  Katy66
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6 years ago  ::  Jan 26, 2008 - 6:52PM #3
Nomi69
Posts: 6,731
[QUOTE=katy66;241833]I am so sorry to hear about your mother and sister. My prayers are with you and your sister.


My sisters and I have been caregivers for our mother for over 2 years now and it is really getting to be a burden. We have a professional caregiver for 7 hrs monday thru friday but the rest of the time it is up to us. Mom has had a stroke and is bed ridden. It is getting harder to lift her and keep her cleaned up and now she won't eat some of the time.

I and my brother want to put her in a rest home but my sisters don't think that she would get adiquate care. I don't think she is getting adiquate care now. We are not nurses and we don't know what to do a lot of the time.

May God bless you and yours
Katy66[/QUOTE]

I feel for you. My sister and I did the very best we could. We did not want to put her in a nursing home...but I was trying, because I knew I had to do something. So many avenues I tried, just hit a deadend, or a snag.  We loved our mother, but she could be very difficult. Everything one would try with her, often proved to be a battle. She balked at the idea of "adult" daycare, and anyone else staying with her, or a nursing home. It was a nightmare, to say the least. Even when she was in hospitals, the nurses got fretted with her demands, and refusal to cooperate with them. The tragedy happened on a friday. I had arranged for a small amount(a few hours, hoping to add to the time, as money might allow)of help to begin on the following monday, to give my sister a few much needed breaks. Sadly this proved to be too little, to late. Unless people have done caregiving, they cannot imagine the pressure it puts on someone. We didn't have a life for ourselves....our lives were our parent"s. I would encourage you to consider a nursing home(my father was in one, until he died. He seemed to be treated very well. Because the pressure, only gets worse. Its incredibly sad, because most of us want what is best for our parents...but not many of us, are prepared for the high demands, and  the highly stressful costs, of longterm caregiving. I don't know if you have sattelite TV. BUT if you do, the Women's Entertainment Network, has a new program coming in March. The name of it is, "Women Behind Bars".  My sister's story will be profiled, on one of their shows. I don't have any exact dates. They have 11 women to profile...but ours should be easy to identify....I think it may be the only one that deals with caregiving.
"Do unto others as you would have them do unto you".
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6 years ago  ::  Jan 26, 2008 - 8:37PM #4
katy66
Posts: 216
Nomi69, Thanks for the info on TV program and thanks for the support. I spoke to my youngest sister and she definately doesnot want to put mom in nursing home. Said she would just quit work and take care of mom. She has a good job and I sure hate to see her give it up. I really don't think she will but we need to do something. I am 17 years older than her and 12 years older than my other sister and I am just all tired out.

God Bless you
Katy66
Blessings,  Katy66
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6 years ago  ::  Jan 27, 2008 - 12:19AM #5
Nomi69
Posts: 6,731
[QUOTE=katy66;243496]Nomi69, Thanks for the info on TV program and thanks for the support. I spoke to my youngest sister and she definately doesnot want to put mom in nursing home. Said she would just quit work and take care of mom. She has a good job and I sure hate to see her give it up. I really don't think she will but we need to do something. I am 17 years older than her and 12 years older than my other sister and I am just all tired out.

God Bless you
Katy66[/QUOTE]

I am about 16-17 years older than my sister who helped me. I respect your sister's position. I understand where shes coming from. BUT I hope she realizes, all the difficuties that can come with such a responsibilty. I worked as a Nursing Assistant for about 31/2 years, in addition to caring for all the loved ones(6), I have helped. I stayed with elderly people, but none were ever as difficult as dealing with my dear mother. I always told people...she meant no harm to anyone, but unfortunately  it didn't always turn out that way. Even without meaning to she could wear people down, in a hurry. I couldn't stay with her long...my nerves are so bad, she would have me a basketcase, real fast. I don't know how my sister managed as long as she did. She was in fact threatening to leave...and much as I know she needed to, I had no idea what I would do with my mother. The ONLY reason my sister stayed long as she did, was because she knew my health is not good, and she knew it would fall on me. That's why I was trying to get her into a nursing facility. My sister and I wondered if they would keep her tho. She was too restless, demanding, and just very hard to care for. Some facilities, will refuse to keep someone hard to deal with. Our father wasn't so bad...he was easygoing, but she was worse than trying to deal with a child, in their terrible two's. Nevertheless, we wanted what was best for her. It just is so terrible how it ended up.  Something we would have never, ever, expected to happen, and certainly didn't want to happen. I just hope your family has a good support system. We didn't have, even tho it should have been obvious to many, we both were caving in. We were both so physically and mentally drained, we were just worn completely out. We did the very best we could, and that makes it even sadder, that it ended as it did. Pls stay in touch here, and let me know how you and sister are doing. My father had many strokes. They are so debilitating. I wish your mother well too.  Warm Regards to you and your sister.
"Do unto others as you would have them do unto you".
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6 years ago  ::  Jan 27, 2008 - 12:57AM #6
paulann2
Posts: 1
[QUOTE=Nomi69;243919]I am about 16-17 years older than my sister who helped me. I respect your sister's position. I understand where shes coming from. BUT I hope she realizes, all the difficuties that can come with such a responsibilty. I worked as a Nursing Assistant for about 31/2 years, in addition to caring for all the loved ones(6), I have helped. I stayed with elderly people, but none were ever as difficult as dealing with my dear mother. I always told people...she meant no harm to anyone, but unfortunately  it didn't always turn out that way. Even without meaning to she could wear people down, in a hurry. I couldn't stay with her long...my nerves are so bad, she would have me a basketcase, real fast. I don't know how my sister managed as long as she did. She was in fact threatening to leave...and much as I know she needed to, I had no idea what I would do with my mother. The ONLY reason my sister stayed long as she did, was because she knew my health is not good, and she knew it would fall on me. That's why I was trying to get her into a nursing facility. My sister and I wondered if they would keep her tho. She was too restless, demanding, and just very hard to care for. Some facilities, will refuse to keep someone hard to deal with. Our father wasn't so bad...he was easygoing, but she was worse than trying to deal with a child, in their terrible two's. Nevertheless, we wanted what was best for her. It just is so terrible how it ended up.  Something we would have never, ever, expected to happen, and certainly didn't want to happen. I just hope your family has a good support system. We didn't have, even tho it should have been obvious to many, we both were caving in. We were both so physically and mentally drained, we were just worn completely out. We did the very best we could, and that makes it even sadder, that it ended as it did. Pls stay in touch here, and let me know how you and sister are doing. My father had many strokes. They are so debilitating. I wish your mother well too.  Warm Regards to you and your sister.[/QUOTE]
My prayer's go out to you and your sister. I'm my mother's caregiver, of one year now. I was with her till my father passed away. I understand the pressure.
God bless you both.
paulann2
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6 years ago  ::  Jan 27, 2008 - 2:43PM #7
JenellY
Posts: 15
Such a sad situation, and I think it is important for all to remember that just as you and your sister did not know where the situation would lead, neither do any of us in those situations we may be in or ware of others in.  I, too, have been in the caregiver role several times, including my mother. She too had always been diffiult to get along with, and her mental deterioration with Altzeimers magnified that greatly. My father had already passed away before she needed care, and although I had 4 siblings, at least two of whom could very well have helped me care for her, none offerred, and I very nearly worked myself to the point of collapse before she passed away. But I must accept also that it was I that made that choice to do so, and I really could have chosen different options. My mother's situation would have made nursing home care possible, but I let myself be swayed by her determination to never have to go to 'one of those places' . I didn't see it at the time, but now, looking back, I can see how she used that to manipulate me and others. Of course no one wants to end up in a nursing home! but now as my own health begins to fail, I look at my own children and cannot think of trying to cooerce or force them into taking on the burden of my care when that times comes. That would be very selfish of me, as honestly it was for my mother to do as she did to me. Sometimes we do need to temper love and loyalty with reality. That said, my prayers are with those that choose this path.
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6 years ago  ::  Jan 27, 2008 - 10:14PM #8
Nomi69
Posts: 6,731
[QUOTE=paulann2;243967]My prayer's go out to you and your sister. I'm my mother's caregiver, of one year now. I was with her till my father passed away. I understand the pressure.
God bless you both.
paulann2[/QUOTE]
Thank you for your condolences. In my opinion, caregiving is one of the hardest jobs there is. In fact, there is a lot of burnout in the nursing profession, for that reason. A friend of mine, who also did nursing with elderly people, told me one time, after she had stopped. She said "I had to get away from these old people, they were killing me". Its sad, but altho it is a job that must be done...it isn't easy, by any means.
"Do unto others as you would have them do unto you".
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6 years ago  ::  Jan 27, 2008 - 10:28PM #9
Nomi69
Posts: 6,731
[QUOTE=JenellY;244755]Such a sad situation, and I think it is important for all to remember that just as you and your sister did not know where the situation would lead, neither do any of us in those situations we may be in or ware of others in.  I, too, have been in the caregiver role several times, including my mother. She too had always been diffiult to get along with, and her mental deterioration with Altzeimers magnified that greatly. My father had already passed away before she needed care, and although I had 4 siblings, at least two of whom could very well have helped me care for her, none offerred, and I very nearly worked myself to the point of collapse before she passed away. But I must accept also that it was I that made that choice to do so, and I really could have chosen different options. My mother's situation would have made nursing home care possible, but I let myself be swayed by her determination to never have to go to 'one of those places' . I didn't see it at the time, but now, looking back, I can see how she used that to manipulate me and others. Of course no one wants to end up in a nursing home! but now as my own health begins to fail, I look at my own children and cannot think of trying to cooerce or force them into taking on the burden of my care when that times comes. That would be very selfish of me, as honestly it was for my mother to do as she did to me. Sometimes we do need to temper love and loyalty with reality. That said, my prayers are with those that choose this path.[/QUOTE]
One of the sad things about caregiving(especially family)so often, it falls on one, or two, and may be, just because they are the willing ones...like in our case. I agree with you. I have an only child, a son. I have no desire to be a burden on anyone. If/when it comes to that, I will go to a nursing home, or something. I just will do whatever I can, to avoid being a problem for someone else.  Our mother, was manipulative too. Our father used to get very angry with her at times because of it. She would put guilt trips on him, and her children. My sister, and I were the only ones who would put up with it. AND nurses at some facilities she had been in, and knew who she was...pretty much hated to see her coming. 

When she wanted something, she wanted it right now. In fact, one particular time. I went to see her, and she told me the nurse was being  mean to her. I said something to the nurse, and she said, noone's being mean to her. BUT she constantly wants something, and wants it right now, and we can't get our job done. She doesn't like to wait, for us to do things, we are trying to get done. I felt like a two-cent piece. They had a wheelchair in her room, and it happened our father was there at the same time(this happened more than one time, both being in at the same time).....and one of the nurses removed it. She said evereytime they turned around, she was wanting someone to take her to see our father. We loved her, but she was really a big handful, to care for. The day she got out..honestly I could tell the nurses were happy to see her leave.  Some elderly people are easy to look after, sadly, she wasn't one of them.
"Do unto others as you would have them do unto you".
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6 years ago  ::  Jan 28, 2008 - 9:24AM #10
Maple
Posts: 1
[QUOTE=paulann2;243967]My prayer's go out to you and your sister. I'm my mother's caregiver, of one year now. I was with her till my father passed away. I understand the pressure.
God bless you both.
paulann2[/QUOTE]

I sympathize with your position; I am new here, & dont even know how to post yet - but your description of duty is much like mine: exhausted and mentally drained. I hope you are feeling more rested now & better prepared for this uphill challenge.
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