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Switch to Forum Live View The pitfalls of caregiving.......
6 years ago  ::  Feb 26, 2008 - 6:21PM #11
Nomi69
Posts: 6,731
For any who want to know more about our family tragedy...The program "Women Behind Bars"....segment about her, is slated(at this time)to air, on the 18nth of March. It will be on the Women's Entertainment Network Channel.  I think the time is sometime between 5 and 8 PM. You might check your viewing guide to make sure, about the time There is supposed to be a caregiver expert to speak in the show.
"Do unto others as you would have them do unto you".
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6 years ago  ::  Feb 26, 2008 - 10:30PM #12
Peaches805
Posts: 6
I am so sorry to hear about the tragedy of your mother and sister. I know it had to be hard to really lose both of them together like that. I am glad that you have done this post because there are so many adult caregivers, as well as those who care for disabled children, that need to see and read about this. It is sad that in the richest country in the world that we the American citizens work our fingers to the bone and pay taxes in to take care of us when we become disabled and unable to care for ourselves there is no help to be found finacially to care for loved one at home. And even skilled nursing care of a nursing home cost an arm and leg and you literally have to give up everything to your name to pay for it through medicaid. For those who may not know medicare only pays 20 100% covered days and 80 80% covered days if you meet "skilled criteria" after a stay in the hospital to be in a nursing home or nursing rehab facility. After that it pays nothing toward skilled nursing care and just room and board alone can range from $90-200 per day for a semiprivate room. Families do not want to give up in some cases homes that have been in there family for years - the house there parents have built together, they grew up in and so forth. Many can not bear the thought of placing their loved one in a nursing home. Unfortunately there are more caregiver illness and deaths in this country simply from pure mental, physical, and finacial exhaustion. Abuse rates are enormous because after you reach a breaking point with no break you may scream and yell or actually physically abuse or even cause the death of the person you love. In some cases caregivers even commit suicide so that they do not have to be under the stress any longer and they won't have to make the decision to place their loved one in some one elses care. Elder abuse is among one of the highest rates of crime in the nation and not all of it is in your nursing homes. There is a book called "The 36 Hour Day" that is about caregivers trying to care for their loved ones at home and how to recognize the signs that it may be time to say "I can't do this on my own". These are the hardest words to say with someone you love. One of the hardest decisions I made was to place my grandmother in the nursing home - and I work in a nursing home. Not because I was so much concerned that she would not receive good care but because this is a woman who helped care for me as a child changed my diapers helped raise me and make me who I am today and I was going to have to let some one else help care for her. But all in all it was the best decision for her, myself and my family. If you are in doubt of the quality of care they may give at your local nursing home there annual state surveys are available online through your state Dept of Human Resources website. Call and inquire - see if the staff seems concerned in caring for your loved one. Take a tour - and don't just take it on a weekday during regular buisness hours - ask for an evening or weekend tour. A facility willing to tour your during this time is more likely not to have anything to hide in their quality of care. At my facility we are open to admission 24 hours a day 7 days a week. I have been known to help tour families as late as 8:30 pm at our facility on a Friday night. If you have a large enough support system or as she said earlier enough money to hire help having your loved one at home and caring for them is a great option. But for those like myself and many others it is not. Sometimes we just have to consider what is truly best for the one we love no matter how much it hurts to face that we can not do it alone. Nomi69 my prayers are with you and your family with this tragedy and you have done a phenomenal work by getting this out and making people aware of what had happened. Even in such tragedy God has used you and your family to help someone else who is going through the same thing or about to experience the same thing - you have saved lives. May God bless you and keep you and my prayers are with you. To Katy66 and anyone else who maybe reading this and thinks that nursings homes are a place of death neglect and abuse or having trouble with the thought of placing their loved one in a nursing home please read my post  "The Strength of his Love" also on this caregiving forum - I hope it will show that there are many in the nursing homes that are there for more than a paycheck and how much life and love is there.
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6 years ago  ::  Apr 03, 2008 - 1:49PM #13
osweetleaf
Posts: 1
Thank You for your honesty, it must be a hard tale to tell, I too am a caregiver (I think) and I think the flood gates are about to open. I am 45 years old and a recovering alcoholic, sober 5 years in june, after 4 treatments and hitting rock bottom suicide attempt, custody of my 2 boys given to X-mother in law, I received my "divine intervention" not being a spiritual person I would laugh & scoff when people would tell me thier tales, but one day, in treatment I Knew my battle had been lifted from me ,heck if I knew how or why But I had learned to start beliving in every thing happens for a reason. I had no place to go .my elderly parents 78 both gave me another chance.My father was my mom caretaker she was wheel chair bound the last 3 years but my father did almost everything he could or knew how to, I help if I had to , but only if asked,as mom lost her will to live she started to have diarrhea every day  but never in the b-room and always in the middle of the night,(OH by the way I was a nursing assistant in NH for 10 years and a LPN for 12) my father tried but was not good at helping mom with dignity and not very gentle in moving her little 90 pound arthritic body so I took over "Poopy pants" duty,I am 5 of 6 kids and mom was never real nice about letting me know I "was such a disappointment" My older siblings distanced themselves, the eldest died, 1 in california my sister 4 years older just turned into a basket case and would cry (She was NA too for 13 years) my little brother stated my father was to controlling and distanced himself with a financial fight.But as I was learning every thing for a reason,my mother and I had a relationship for 2 years that was wonderfull, we would laugh when we had our nightly bed baths and one night she looked up at me and stated Whod of figured it would be you to care for me,and laughed as I told my dad to leave us so I could bathe her, She finally saw past my alcoholism, bad decions and I think knew I was doing this out of love for her.She died 3 years ago at home in her bed no nursing home. 8 months later my 48 year old sister died sudden death, just died on me, my best and only friend other  than mom. Now my healthy dad went into a tailspin,diabetic  but healthy he sufford a stroke and MI on the table having a lower by pass, next he lost a toe on his right foot, another stroke and gangrene othe foot lost 3 toes, her is where I get messed up, he has always helped me out of my problems financially and has a way of holding it over me, I am to a point still 12, I have not worked  for 4 years in exchange for doing the yard work, some shopping house cleaning but he still is able to drive, loves to bake,and does some shopping(OH he is on dialysis 3 times a week) but he doesnt think Ido anything I get money just for essentials, and my boys are here every other weekend and he is wonderfull to them,but I get so angry he denies that I helped at all with mom, I will get the house when he dies but he makes comments like "Your fleecing me" and why Would I give you my money now youll get it when I dead. I dont have to stay but I love him and dont want to see him in a home. But he has made me so angry that I have seen spots infront of my eyes, I love my yard and garden I am not allways mad and we mostly get along. One day I was so frustrated by his refusal to admit that I do make it possible for him to stay in his home without hiring out every thing yrd work, shoveling(MN winters) and its not all about money that I cost him for room and board, I struck out and knocked over his table by the couch, scarred the heck out of us both, I was never out of control before and I walked away wondering who was that that did that??How ungratefull could I be? But know when we argue he flinches as if I am going to strike him, I feel so terrible, but wonder if it another control thing. So I understand the pitfalls but am confused am I a caregiver or just a loaf of an mooching 45 year old 12 year old?Sorry dont know where this came from I guess seeing the anger issues, I am sorry for the destruction of your family and will think of your sister often and i hope she is ok with herself. PS havent seen my 2 brothers since sisters funeral 2 years ago, and my sister in Calif. was mad we had to cancel a flight to see her cause dad had flu and she thought she lost the plane fare!(she is a millionare and lives  in NewPort beach!!!) Some peoples kids!!! thanks I feel 100 pounds lighter! love and respect to all Chris
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6 years ago  ::  Apr 08, 2008 - 8:37PM #14
Nomi69
Posts: 6,731
You sound like a very caring person. It sounds like you have had more than your share of problems too. Most of us love our family, and want to treat them right. BUT no matter what we are just humans, and humans can breakdown and falter. Sadly, there is always only one or a few in a family  who will alter their life to help other chronically ill family members. It is hard enough if you are well, but if you are sick yourself, it is nothing short of catastrophic. My sister and I were both ill ourselves. We were the sick trying to help the sick. It has taken a huge toll on my sister, who has lost everything but her life...and has taken a large toll on me as well. Unfortunately,  family caregivers are not always appreciated. There were people who could see my sister and I breaking down, but would not offer a hand. The two males in the family, only wanted what our parents owned. Tried to lie and say they helped our parents, but it was a big fat lie. I had done caring for my parents and my chronically ill husband, until he died in 1999, from COPD. At times I had all three alone to do for. SO I understand exactly what you are saying.

One of the males works for UPS, making big bucks, would brag about how much he made. Rarely spent anything on our parents. BUT guess who ended up "stealing" everything they owned? You might know, he did. It almost bankrupted me, trying to fight him, in court, when I was the one who had their Will. BUT to make a long story short...he stole what they had legally. He lived within 100 feet of the house our parents lived in, and rarely ever seen them, unless he wanted something. Rarely went to see our father, in the nursing home, and would not look at him in his coffin. After our father died, never checked to see how our mother was, altho he lived almost on top of her, on land our father gave him, free and clear. BUT you know, down deep, your  father knows just like this "brother" knows who did what. Its just a shame sometimes the way things work out. AND our sister, in prison? They never call, or anything to see if she is still alive. She is very sick. I honestly don't know how she is even still alive, all she has been thru. BUT the way I look at it...their day will come, when they have to face the truth. No doubt your father will have to as well. So don't let it get the best of you.

The one thing you will have, is something money can't buy. A good conscience, knowing you did all you could to help your parents, in their time of need, in their twilight years. I don't know if you father is terminally ill, or not...but if he is.....Hospice will help some. But as I say, I know just how hard caregiving is, and I admire that you are willing to hang in there. So don't accept anyone making you feel are not doing your best....because that is all any of us can do. Take care of yourself, and I wish you the best life can give you......Nomi

If you will, I would be very grateful if you would sign the Petition for my sister...Again thanks.

http://www.petitiononline.com/qd8d1919/petition.html

.
"Do unto others as you would have them do unto you".
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6 years ago  ::  Apr 09, 2008 - 11:16AM #15
ark3066
Posts: 3
Hello to all of you.
My heart goes out to each and everyone of you.  I am the caregiver of my mother right now and it is so difficult.  My mother can still do a few things for herself but is hard to deal with.  She has COPD, some dementia, and Parkinson like symptoms.  She only weighs about 85 lbs.  My younger sister moved her in to her home 3 years ago and had coverted an attached garage into an apartment for my mother.  After 3 years my sister could not deal with it anymore and just dropped my mom off at my home with an hour's notice.  I have a very tiny home not quite 500 sq.ft. and we are basically living on top of each other.  I've looked into nursing homes, assisted living etc...but it is all too expensive.  My mother has a little less than 10,000 dollars in her accounts and the state wants her to liquidate most of her assets before she can get any type of help.  My mother is her own power of attorney and refuses to cash in what she has.  I have 3 sisters yet they won't even call.  I know their guilt is eating them up so they feel if they don't call or come over, they don't have to face the guilt.  All I have asked of them is to get together so we can discuss the situtation.  They won't return calls.  I have been able to get VNA assistance for the last month but they feel there is nothing left for them to do.  I'm 52, I take care of my granddaughter 3 days a week and my youngest son who still lives at home, uses my car every day to go to work.  I feel trapped!!!!!!  When I go to watch my granddaughter most times I take my mother with me.  She cannot take a shower by herself, but she can dress herself and make her own food as long as it is not cooking on the stove.  But she forgets or decides shes not hungry so I have to force her to eat.  The OT was helping her with bath/showers until last Friday when she discharged my mother.  Yet she told her she cannot take a bath/shower by herself.  I cannot give my mom a bath.  It's that simple.  I had not been sick in over 2 years yet after a month of my mother staying with me, I had a horrible sinus infection, which also went into my gums.  My doc couldn't believe how fast I have gone down hill.  Then the antibotics he gave me launched a full scale allergic reaction which ended me up in the ER.  Now that I am through that, the original infection is starting up again.  I know it is caused by low energy.  I also know there is a reason for this to be happening at this time in my life.  I've always had compassion for others but not for myself and I believe this is part of what I am to learn.  I love my mother but we have never gotten along very well and this may also be why this is happening.   Anyway, I guess I just needed to get this out as I don't really have an outlet anywhere else.

Than you so much for listening and making a place where we can come to tell our stories.
May love and light be with all of you.
Ann
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6 years ago  ::  Apr 09, 2008 - 6:38PM #16
Nomi69
Posts: 6,731
[QUOTE=ark3066;420008]Hello to all of you.
My heart goes out to each and everyone of you.  I am the caregiver of my mother right now and it is so difficult.  My mother can still do a few things for herself but is hard to deal with.  She has COPD, some dementia, and Parkinson like symptoms.  She only weighs about 85 lbs.  My younger sister moved her in to her home 3 years ago and had coverted an attached garage into an apartment for my mother.  After 3 years my sister could not deal with it anymore and just dropped my mom off at my home with an hour's notice.  I have a very tiny home not quite 500 sq.ft. and we are basically living on top of each other.  I've looked into nursing homes, assisted living etc...but it is all too expensive.  My mother has a little less than 10,000 dollars in her accounts and the state wants her to liquidate most of her assets before she can get any type of help.  My mother is her own power of attorney and refuses to cash in what she has.  I have 3 sisters yet they won't even call.  I know their guilt is eating them up so they feel if they don't call or come over, they don't have to face the guilt.  All I have asked of them is to get together so we can discuss the situtation.  They won't return calls.  I have been able to get VNA assistance for the last month but they feel there is nothing left for them to do.  I'm 52, I take care of my granddaughter 3 days a week and my youngest son who still lives at home, uses my car every day to go to work.  I feel trapped!!!!!!  When I go to watch my granddaughter most times I take my mother with me.  She cannot take a shower by herself, but she can dress herself and make her own food as long as it is not cooking on the stove.  But she forgets or decides shes not hungry so I have to force her to eat.  The OT was helping her with bath/showers until last Friday when she discharged my mother.  Yet she told her she cannot take a bath/shower by herself.  I cannot give my mom a bath.  It's that simple.  I had not been sick in over 2 years yet after a month of my mother staying with me, I had a horrible sinus infection, which also went into my gums.  My doc couldn't believe how fast I have gone down hill.  Then the antibotics he gave me launched a full scale allergic reaction which ended me up in the ER.  Now that I am through that, the original infection is starting up again.  I know it is caused by low energy.  I also know there is a reason for this to be happening at this time in my life.  I've always had compassion for others but not for myself and I believe this is part of what I am to learn.  I love my mother but we have never gotten along very well and this may also be why this is happening.   Anyway, I guess I just needed to get this out as I don't really have an outlet anywhere else.

Than you so much for listening and making a place where we can come to tell our stories.
May love and light be with all of you.
Ann[/QUOTE]

There are so many stories like this. AND so sad. It is a shame, that those who are most compassionate, are usually the ones who end up with family caregiving. I can understand how easy it is to feel you are being taken advantage of. There are so few options to lend a hand, as far as agencies. I know, I contacted them all. About the only thing available, was Adult Daycare(which our mother refused), or hand over everything you own to put them in a nursing home.  That wasn't required with our father, since our mother still lived there. Unless you are pretty much a total pauper...there is virtually no help. Hospice is covered by Medicare, and will help someone terminally ill some. Just before our mother died, I had arranged for a small agency named "Home Instead", to come help with out mother one day a week. The prices were reasonable, and I was going to add more time, as money might afford. Our mother died on a friday night...they were to come on the following monday. Sadly, it was too little, too late. As you have found, caregiver stress can make a healthy person sick, so you can imagine if you are already sick. In fact, I have read, it can shorten the caregiver's life.  Frankly, I believe it. I don't know how old your mother is, but you might see an attorney, about having her declared legally incompetent, so you can make the decisions. I had power of attorney for my mother, until she died. She was not agreeable to anything, nursing  home, or anything else.  I wish I could give you some more options to check on, but they just don't exist. And what few there are, aren't always acceptable to the one being cared for, which makes it even worse. I would suggest, you lay it on the line to your siblings tho. They need to either stand behind your decisions regarding your mother's care, or lend a helping hand. I would suggest doing it soon too...because it does not get easier, but harder. Take care, Ann....I wish you well. In my opinion, many of you here, are among the rare few...who are willing to put others before themselves.  While that may be noble, it doesn't make it easy........Nomi
"Do unto others as you would have them do unto you".
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6 years ago  ::  Jul 03, 2008 - 10:51PM #17
VINCENTCARES
Posts: 3
There is hope in The Lord. He came to heal the broken-hearted, and to set the captives free.
Vincent
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6 years ago  ::  Jul 06, 2008 - 3:24AM #18
Nomi69
Posts: 6,731
[QUOTE=VINCENTCARES;603773]There is hope in The Lord. He came to heal the broken-hearted, and to set the captives free.
Vincent[/QUOTE]

So very true.
"Do unto others as you would have them do unto you".
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6 years ago  ::  Jul 13, 2008 - 3:28PM #19
justmetoday
Posts: 12
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..
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6 years ago  ::  Jul 19, 2008 - 2:48PM #20
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.
"Do unto others as you would have them do unto you".
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