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Switch to Forum Live View The pitfalls of caregiving.......
6 years ago  ::  Jul 19, 2008 - 2:50PM #21
Nomi69
Posts: 6,731
[QUOTE=justmetoday;622303]I have been reading a few post of other caregivers.. I have been taking care of my mentally challenged aunt for 2 and half years.. It is very hard to never get a break from her. She is very demanding and needy her former caregivers were not good at all. So she knows that i feel that she deserves much better care then before, I do love i always have, she will be 57 august 7 . I am now 50 , I have 7 year old twin grandkids and she is very jealous whenever they come to stay with me.. at first she thought if she was mean enough to them they wouldn't come back.. i showed her and have taught her that hitting is never ok.. I know that they're programs that can give me down time but, yet to have found any .. she is 24/7 on and on.. Wow has my life changed i "used to be very independant and just get in my car and go whereever whenever...now she decides when i can go or if i can ..
Many times we go somewhere and she just refuses to get out of the car.. Plus will throw a fit if you try to get her to do what you want.. my bf and i have broken up due to her. I always make her needs first..I guess after this much time i just really need a break..
please take care all,
praying for some down time here..[/QUOTE]

Yes, it is very hard doing caregiving. I spent about 15 years caregiving someone up until my mother died in 2002. At times I was caring for the needs of three people, altho not in great health myself. Most of us want the best for our loved ones. BUT it can really take a toll. I found there is virtually no help for caregivers, unless you have money. I know I tried and spent many hours on the phone, trying to get help. Some people think there are, but when you start looking for it, there is none there. I tried to get my mother into a nursing facility, but she was turned down. It is just so sad, when we get old, and must depend on others. It is also sad, for those who have to assume the overwhelming, and unending care. I've been there. it takes a kind heart, but it sure can wear out the mind and body of those doing the caring. Take care. I wish you well.
"Do unto others as you would have them do unto you".
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6 years ago  ::  Jul 19, 2008 - 7:20PM #22
MarleneEmmett5
Posts: 1,717
[QUOTE=justmetoday;622303]I have been reading a few post of other caregivers.. I have been taking care of my mentally challenged aunt for 2 and half years.. It is very hard to never get a break from her. She is very demanding and needy her former caregivers were not good at all. So she knows that i feel that she deserves much better care then before, I do love i always have, she will be 57 august 7 . I am now 50 , I have 7 year old twin grandkids and she is very jealous whenever they come to stay with me.. at first she thought if she was mean enough to them they wouldn't come back.. i showed her and have taught her that hitting is never ok.. I know that they're programs that can give me down time but, yet to have found any .. she is 24/7 on and on.. Wow has my life changed i "used to be very independant and just get in my car and go whereever whenever...now she decides when i can go or if i can ..
Many times we go somewhere and she just refuses to get out of the car.. Plus will throw a fit if you try to get her to do what you want.. my bf and i have broken up due to her. I always make her needs first..I guess after this much time i just really need a break..
please take care all,
praying for some down time here..[/QUOTE]
Just me today:
I had a uncle who had Alzheimer's and he was my late father's surviving brother.
His second wife cared for him in their home~ I used to call him let's say two - three times a week so I could
keep him "talking and occupied" so that his wife could do some stuff .
Another cousin and I were the only ones "who took any interest in him"~the others just forgot about him and
his troubles. Now when he passed three cousins & their mom didn't even come to the funeral.

I used to call and ask him all kind of questions about my dad and my aunt & uncles.Also about the war.
I miss him and the stories he'd used to tell me~He was my "last conneection with my dad,uncles & grandparents"
Try to be patient with you mom~you have to remember that "she can't help what's happening to her"
It's the disease~ not her. She needs you now just like "you needed her when you were a child"
She's dependant upon you~You're her whole world. She's looking up to you.

My mom passed away in 1974 due to a brain tumor/stroke~she was taken care of by my dad & myself in our
home~my dad refused to put her in a nursing home.
We did have "Visiting Nurse Service" during the day~but at night it was only US,all alone with her.
I was 18 when she had her stroke in January '74 ~and 19 when she passed away,in Sept, '74.
I helped my dad feed her,wash her,brush her hair. All the while also cleaning the house & cooking meals.
I grew up fast at the age of 19~but I was still a child who needed my mom.
I'm 54,she'll been gone 34 years as of September 29~ I miss her terribly.
Last June I heard her voice on a tape a cousin played for me~ it was when my dad's dad was ill back in 1972,
on the tape I heard the "voices" of my mom,dad,uncles,aunt~all of whom have passed!
can you imagine my reaction?? I'm still "shocked a year later"!

Treasure your mother's presence while she's still here on Earth!
Be strong for her, pray for her and love here till the end of her days!
That's the most important thing you can do for her!
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6 years ago  ::  Jul 19, 2008 - 11:06PM #23
justmetoday
Posts: 12
Dear Marlene,
My mother passed away one year to the date yesterday, she is my aunts sister that i care for.. I wish i could say that i cherished her, but many things of her choice could not let that be the way . but i did love her , just because she was my mother, although she never really took care of me.. i put myself and my sister in foster care when i was 13, she was given the chance at that time to choose us over her husband the child molester.. the judge declared her an unfit mother.. now after she has passed i find out that she told the family that we kids were the bad ones..oh well she passed on now and the molester is still there..
I wish i could say that it's all good but, it is not i was truley traumatized by my childhood.. still have nightmares this many  years later...
praying for some sanity in my life
peace to everyone,
justmetoday
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6 years ago  ::  Jul 21, 2008 - 1:11PM #24
taffy14
Posts: 16
[QUOTE=Nomi69;245730]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.[/QUOTE]

omg nomi69: i just got thru reading some of the stuff you wrote. omg!! your situation sounds almost like mine except my wonderful sister died (i'm crying) july 2 2002. that nearly tore me apart. then my dad stating getting sick 2 yrs later but continued to work. my brother is my only sibling and they put on medication and he changed drastically.he was put in jail , then a mental home 150 miles from home. i was the one that sent him packages, letters, money. my mom was in the first form of dementia and is (today) getting worse. my brother is really not better but better off. i am so sorry ! and the community would not help they promised this and that! never never showed!! CAREGIVING(sorry) is the hardest job in the world especially when you love your parents such as we do!! got to go!! take care !! taffy
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6 years ago  ::  Jul 21, 2008 - 5:12PM #25
MarleneEmmett5
Posts: 1,717
[QUOTE=justmetoday;636431]Dear Marlene,
My mother passed away one year to the date yesterday, she is my aunts sister that i care for.. I wish i could say that i cherished her, but many things of her choice could not let that be the way . but i did love her , just because she was my mother, although she never really took care of me.. i put myself and my sister in foster care when i was 13, she was given the chance at that time to choose us over her husband the child molester.. the judge declared her an unfit mother.. now after she has passed i find out that she told the family that we kids were the bad ones..oh well she passed on now and the molester is still there..
I wish i could say that it's all good but, it is not i was truley traumatized by my childhood.. still have nightmares this many  years later...
praying for some sanity in my life
peace to everyone,
justmetoday[/QUOTE]
Justmetoday:
I'm so for your mothers loss~ and I'm also so sorry that your aunt "betrayed you,instead of caring for you"!
I'll pray that you do get some peace and sanity in your life.
You are a survivor because of what you did for your sister and yourself when you were a child.
You took control of your lives and got out of a situation that was not good for you,and your sister.
In the Jewish religion a boy "becomes a MAN at the age of 13"~You became a MAN on that day by doing what'
you did to give your sister a better life"
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6 years ago  ::  Jul 22, 2008 - 11:46AM #26
mountainrrman
Posts: 6
There are a lot of people out there who would be willing to help.  They just do not know that the help is needed.  I was one of them.  A lady with cancer went to her pastor and asked for help.  Pastor approached me and asked if I would help the lady.  Thay was 8 years ago.  I have been helping cancer victims ever since.  The problem with most of us is that we do not know that we are needed until we are asked.  If you need help, approach your pastor.  If you do not have a pastor, seek one out.  They know where to find people like me.
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6 years ago  ::  Jul 25, 2008 - 8:47PM #27
itty
Posts: 2,949
[QUOTE=mountainrrman;641057]There are a lot of people out there who would be willing to help.  They just do not know that the help is needed.  I was one of them.  A lady with cancer went to her pastor and asked for help.  Pastor approached me and asked if I would help the lady.  Thay was 8 years ago.  I have been helping cancer victims ever since.  The problem with most of us is that we do not know that we are needed until we are asked.  If you need help, approach your pastor.  If you do not have a pastor, seek one out.  They know where to find people like me.[/QUOTE]

You just went on my list of heros mountainrrman. Right up there at the top with my mother and her sisters. Right now I am stable and don't need much in the way of assistance. That won't last forever. When I do reach the point of real need I will be looking for those people like you.  I know my family will care for me. I also know that the burden can be crushing and I won't put it all on them. Bless you, Sir!

I have been on both ends of this spectrum. I cared for my mother during the last year of her life. She had lung cancer. I was young, only thirty-four. She suffered so. It made her irritable. She couldn't help it and I knew that. I only knew I couldn't fix her pain, I could only try to relieve as much of it as I could. I did that with baths, massages and in as many ways as I could think of. I help her as she cried. I fed her, cleaned her up. It was a nightmare for both of us. She begged me to help her find a way out of the pain and I couldn't. When she passed I was burdened by grief. I grieved losing her I was grief stricken that I felt relieved I didn't have to do the care any longer. A double-edged sword to be sure.

Now, I have glioblastoma multiforme. It is a stage four brain cancer. My treatment is pallitive only. There is no cure. As I said I am stable and in little need of assistance. I dread the days when I do.

Looking at this from both sides I see things a bit differently. I know, now, that a care giver MUST have time for themselves.  It's a MUST. somehow, find a way for some time away. If money is an issue look to your pastor or another organization to get that relief.

Find an outlet, like this one. Find a support group like this one. If your loved one has cancer see the American Cancer Society. They have programs in place for care givers. Pray, meditate or do both. Look to your circle of friends and family to at least relieve you from some of the mental, emotional stress and anguish. Cry. It won't make the situation go away but it can be a relief of emotional overload.

For someone like me who hasn't got dementia try talking to me. Tell me what you need to help me. Tell me what I can do to help me help you. Be up front. I will appreciate and respect that. I know not all people who are in need of care can do these things with you. If the person you are caring for can it may make a world of difference for you. It will make a difference for the person you are caring for. 

I don't know if any of this makes sense. I hope so. I mean no offense. I have great respect and yes, love for those of you who give so much to people like me.

Thank you,

Jo
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6 years ago  ::  Jul 25, 2008 - 8:47PM #28
itty
Posts: 2,949
[QUOTE=mountainrrman;641057]There are a lot of people out there who would be willing to help.  They just do not know that the help is needed.  I was one of them.  A lady with cancer went to her pastor and asked for help.  Pastor approached me and asked if I would help the lady.  Thay was 8 years ago.  I have been helping cancer victims ever since.  The problem with most of us is that we do not know that we are needed until we are asked.  If you need help, approach your pastor.  If you do not have a pastor, seek one out.  They know where to find people like me.[/QUOTE]

You just went on my list of heros mountainrrman. Right up there at the top with my mother and her sisters. Right now I am stable and don't need much in the way of assistance. That won't last forever. When I do reach the point of real need I will be looking for those people like you.  I know my family will care for me. I also know that the burden can be crushing and I won't put it all on them. Bless you, Sir!

I have been on both ends of this spectrum. I cared for my mother during the last year of her life. She had lung cancer. I was young, only thirty-four. She suffered so. It made her irritable. She couldn't help it and I knew that. I only knew I couldn't fix her pain, I could only try to relieve as much of it as I could. I did that with baths, massages and in as many ways as I could think of. I help her as she cried. I fed her, cleaned her up. It was a nightmare for both of us. She begged me to help her find a way out of the pain and I couldn't. When she passed I was burdened by grief. I grieved losing her I was grief stricken that I felt relieved I didn't have to do the care any longer. A double-edged sword to be sure.

Now, I have glioblastoma multiforme. It is a stage four brain cancer. My treatment is pallitive only. There is no cure. As I said I am stable and in little need of assistance. I dread the days when I do.

Looking at this from both sides I see things a bit differently. I know, now, that a care giver MUST have time for themselves.  It's a MUST. somehow, find a way for some time away. If money is an issue look to your pastor or another organization to get that relief.

Find an outlet, like this one. Find a support group like this one. If your loved one has cancer see the American Cancer Society. They have programs in place for care givers. Pray, meditate or do both. Look to your circle of friends and family to at least relieve you from some of the mental, emotional stress and anguish. Cry. It won't make the situation go away but it can be a relief of emotional overload.

For someone like me who hasn't got dementia try talking to me. Tell me what you need to help me. Tell me what I can do to help me help you. Be up front. I will appreciate and respect that. I know not all people who are in need of care can do these things with you. If the person you are caring for can it may make a world of difference for you. It will make a difference for the person you are caring for. 

I don't know if any of this makes sense. I hope so. I mean no offense. I have great respect and yes, love for those of you who give so much to people like me.

Thank you,

Jo
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6 years ago  ::  Jul 26, 2008 - 9:10PM #29
Nomi69
Posts: 6,731
[QUOTE=taffy14;639029]omg nomi69: i just got thru reading some of the stuff you wrote. omg!! your situation sounds almost like mine except my wonderful sister died (i'm crying) july 2 2002. that nearly tore me apart. then my dad stating getting sick 2 yrs later but continued to work. my brother is my only sibling and they put on medication and he changed drastically.he was put in jail , then a mental home 150 miles from home. i was the one that sent him packages, letters, money. my mom was in the first form of dementia and is (today) getting worse. my brother is really not better but better off. i am so sorry ! and the community would not help they promised this and that! never never showed!! CAREGIVING(sorry) is the hardest job in the world especially when you love your parents such as we do!! got to go!! take care !! taffy[/QUOTE]

Caregiving is an honorable work to do...but it is a most difficult task. It is hard enough if you are a well person in good health. If you are not, even worse. It has taken such a toll on my sister and I...we are both in decining health even more. Overwhelming and neverending difficult caregiving can not only harm the caregiver's health, but has been proven to shorten one's life. I believe it. My sister who is incarcerated I, have to help care for now, best I can...send money I can't afford, and see that she is getting at least a bit of decent treatment, however hard that is. There is noone else to do it. It has played such havoc with my life, that I have little desire, or interest in anything. I am now more of a recluse, don't feel like dealing with people any more than I must. GOD only knows what will be the outcome for my sister or me. All I can do is hope and pray for his help to survive every day I wake up to. I wish I could give you some hope...but sadly, it is hard to find..when it comes to caring for someone. If you have the WE Network channel, on July 30th, they are supposed to show the story of our case, at 8 or 9 PM. You can learn a bit more of our tragedy. Take care.
"Do unto others as you would have them do unto you".
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6 years ago  ::  Aug 02, 2008 - 6:15AM #30
Moon-Raven61
Posts: 20
You & your sister are in my thoughts & prayers. You must be a very strong person indeed.
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