The Family Caregiver Forum
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Welcome to the NFCA's Family Caregiver Forum - a place where all family caregivers can post questions, receive support and communicate with others.
motherskeeper
Posts: 121
Joined: Jul 2009
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Saturday July 31, 2010 1:26 PM
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I've been on this site for awhile. It helped me when I was in my deepest depression, when I could not even get out of bed. Things have improved, I still feel a little depression but not as deep, not as dark. Wow, I never, ever want to go there again. If you have ever been there, you know what I mean. Some people say they are depressed but there is a depression so ugly it stops you from functioning. THat's where I was. Thank God, I am coming back after 8 long months of that.
Anyway, thats not why I'm writing. I just wanted to give people an update. I am writing because I am absolutly besides myself with anger right now. Anger at my Mother. She was on her deathbed at one point. Who was there for her. Me.........I quit my job to take care of her, along with that my security, my insurance, my retirement, my future, my income. I also took a leave of absence when she was in the hospitol, lost about 8,000 in income to sit with her all day while she was on life support.
I have been in control of her money for awhile, paying bills etc. And yes, I have had to dip into it for some of my own needs. I rationalized that if she had to hire a caregiver it would cost her much more so it is ok to spend a little of her money.
Problem is, she never died which they told us she would. In fact, she is doine quite good and can get up and do things like laundry, cooking, cleaning and check the mail. Yes, she checked the mail and saw one of her bank statements. Now she wants to know where her money went and she saw that I used HER money to put gas in my car. I am beside myself and want to tell her all that I have lost, all the money I have lost to be there for her. My life, my job everything. And she wants to bitch over gas money.
Now I am telling myself what a worthless, thankless job this is. In the end, this is the appreciation I get. They wanted to stick her in a nursing home. Where would her money be then. I thought she was dying I had no choice but to use her money as my money from working was no longer there.
Anyway, I just have been crying and upset that how thankless this job is and in the end this is what I get. I just want to slap her and say you would probably be dead if it wasn't for me. Right now, i just despise her.
Thanks for letting me vent.
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Star1
Posts: 299
Joined: Sep 2008
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Saturday July 31, 2010 5:50 PM
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Vent away!! I sure know how you feel, I go through this same thing with David all the time. He WOULD be dead if it wasn't for me, I have proof of it. BUT, do you think he appreciates one second of the life I gave up for him?? I quit a high paying job, I brought him into my home, and I've taken care of him since day one, for the past 16 years. And I have heard over and over how I don't contribute anything to the household, it's all his money!
When he was on hospice care and they said he wouldn't live through the night I thought I was finally going to get my life back..........that was in 2001. I went into a depression after he didn't die because I was like "OMG, this will never end!"
Believe me, I understand your feelings. You have sacrificed for her and she doesn't even want you to put gas in your car?? What the heck?
I can tell you this, though, try to channel your anger and disappointment into something more constructive because it will tear you down. Don't let her do that to you. Pam.
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rzxq2y
Posts: 1603
Joined: Jun 2009
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Saturday July 31, 2010 10:25 PM
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Hi, Debbie,
You have iven up everything to take care of your mother, and you are not supposed to use her money to put gas in your car when you have no more money? Does she know what you have given up? I know that it is hard to do with your own mother, but I wish that you did tell her what you wanted to tell her, while the only other alternative is for you to start looking for a job and for her to start looking for a caregiver. Maybe it is time to sit down with her and have a serious talk, if you have not done so already.
On one hand, it is a good thing that she got better. From what you describe, she can do more things than my wife can. On the other hand, a short term situation for you may turn into a long term situation. Unless her money can support both of you for as long as you are taking care of her, it also becomes a non-sustainable situation. I wish that there is some way for your mother to understand that.
As Pam said, tryt not to let anger consume you. You can live through the deep depression, you can channel your anger to something constructive.
Best Regards,
Min-Shih
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raisingme
Posts: 16
Joined: Jul 2010
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Wednesday August 04, 2010 1:30 PM
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I totally understand what you are saying and how you are feeling and agree with the post that are advocating a little "tough love". I have had to do this and it was not easy for me as I am (er, maybe that is was) an easy going person HOWEVER, keeping in mind that we teach people how to treat us, able bodied or no, it only makes matters worse if we shut up and say nothing. By doing so we are giving our silent consent to behaviors that by any standards are NOT OKAY. I have had to lay it on the line several times for my husband and continue to do so as it is a difficult role, under appreciated and under valued that I (and you) have taken on. First I deal with my emotional charge that comes about as my reaction to a given situation (such as being taken totally for granted with a good helping of abuse piled on top). Next I sit down with my spouse, right across from him, say "Look at me" in a brook no nonsense tone and then I tell him the way it is. No holds barred, lay it on the line.
An example came up only two days ago. He had been totally bedridden for three days in unmanageable pain, could barely make to the bathroom and was using a urinal beside the bed. Day four and he is feeling better and as he was occupied at his computer checking his email I thought to take advantage of it to catch up on my lost sleep. I told him I was going to lay down for an hour and off I went, confident that he was up to managing without me for that time. Manage he did, he went out into our garage (while I was sleeping) pulled down the ladder that allows access to the attic and up he went. And back down he came with the box he was looking for. He is extremely compromised on his left side due to a stroke and to top that off he had hip replacement surgery last summer plus he has a plate and several pins in one ankle leaving him with limited flexibility in that ankle.
When I got up from my nap and noticed the box down from the attic storage I asked him a question I already knew the answer to. He told me that it was okay because he had his cell phone up there with him in case anything happened. (And this makes it ok???) I was livid. I told him not to say another word and I went outside to "get some space". Only when I had calmed down and assessed the situation did I approach him. Again, I sat down across from him, told him to look at me and spelled it out for him.
When our "charges" act in a irresponsible manner or get into the blame game, or get abusive with those who "care for" them it is up to us to set them straight. I told my husband that what he did was an extremely selfish act considering that whatever happens to him happens to me to and that what he did showed not only a complete lack of regard for his own safety it was also a total lack of regard for my well-being.
At first I put up with his treatment of me giving allowances for the illness, the pain, the meds etc. But then I realized I was enabling him to treat me badly. I do not do that anymore. It is difficult enough to take on the role of caregiver without going victim to the role on top of it.
It can be like dealing with a stubborn, selfish, difficult child and just as you would in dealing with a child, you have to spell out for your 'charge' the consequences of their continued behavior. And you have to be prepared to hold a position regarding those consequences. In this last case I was willing to go to our doctor and inform him that my husband's ability to act rationally and appropriately was endangering not only my husband but myself as well and that I could no longer take responsibility for keeping him safe. Considering I tore the rotor cup in my shoulder last year preventing my husband from falling two days before he did do something stupid and break his hip I have no doubts I will be heard should I chose to exercise that option. (One of my commandments has become, I shalt not be held hostage in this role). There are options even though they might not suit your charge from the viewpoint of what they want, the options will fit what they need. Needs come before wants - they always have. You need to have the money to feed and clothe yourself before you spend money on "I want to go to the movies". Needs are always senior to wants.
Also, when you allow your "charge" to abuse you then you are allowing them to be out exchange with you and the more out exchange they feel the more abusive they will become. Criminals take and give nothing in return and I will not allow my husband to become or to act in a criminal manner - for his sake as well as my own.
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motherskeeper
Posts: 121
Joined: Jul 2009
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Sunday August 08, 2010 5:27 PM
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I haven't been on since I let off all my steam last week. I fell back into a mild depression. Ended up leaving that night, not telling my mother where I was going. I let her fend for herself for a few days. She showed a renewed since of concerned after that. My family is not confrontational, we might jab each other here and there but things are never really resolved, just swept under the rug and then back to normal. I find myself, when given the chance to speak out on just what I have done for her out LOUD so her memory might somehow but jumped started into what I sacraficed for her. Like the nurse was out the other day, she told my mother she is a miracle patient. After everything she went through and ended up getting off life support, the nurse told her she has a lot of admiration for her. I spoke up and said, well, you know, I took off work for 8 weeks to go to the hospital and sit with her all day coaching her. (when you get weaned of life support, it is very difficult and I coached her everyday, when she was losing hope etc) Anyhow, I put it out there and my mother looked at me in a knowing way. I know my methods are not direct but I know how my family works, everything just goes on like normal. So, if she ever mentions it again. I WILL at the moment say to her what needs to be said. For now, things are just back to the same as usual. Sure my feelings were hurt but I think my leaving her alone for a few days caught her attention. THanks to all of you with all your support. Seems like everyone here has had similiar experiences. So I guess, as part of my learning curve, I now know this is just another normal thing. My first lesson I remember what my heartache over my sister jumping ship when I needed help. I remember coming on here and finding out that is a common thing for siblings to let one person to all the work. So again, I have come a long way from where I was on learning all of these things. Thanks to all of you warm people on here and the support and understanding which has helped me beyound words. So, for now that is where things are.
Star, I feel for you, I know you know how I feel. And I know exactly how you feel. You gave up a high paying job for what? your will be in my thoughts for you have probably the longest experience on this board for being a caregiver.
Min-shin, you have always been right there with your words of wisdom. Always remembering everyone's situations even when they haven't written in awhile. Thanks for your support.
Collete, thanks for the pat on the back, you are definitly the cheer leader on this board.
TiredDave, you said it all, PEOPLE FREAK out over MONEy.
Thank you all for your stories, they really helped me a whole lot. We are all in this togeather. United by our cause. Nobody could ever understand without walking in our shoes. It is the toughest job we will ever undertake. I hope I can get through it all in one piece and come out on the otherside intact one day. Does anyone else feel like they are aging quicker then they should? I look at the dark circles under my eyes and scare myself sometimes. Look like a darn racoon. oh well, everyone have a good day, minute, second however y ou have to get through it.
Debbie
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motherskeeper
Posts: 121
Joined: Jul 2009
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Sunday August 08, 2010 5:27 PM
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I haven't been on since I let off all my steam last week. I fell back into a mild depression. Ended up leaving that night, not telling my mother where I was going. I let her fend for herself for a few days. She showed a renewed since of concerned after that. My family is not confrontational, we might jab each other here and there but things are never really resolved, just swept under the rug and then back to normal.
Although, I do find myself, when given the chance to speak up on just what I have done for her hoping I might jumped start her memory. For instance, the nurse was out the other day, she told my mother she is a miracle patient. After everything she went through and she ended up getting off life support, the nurse told her she has a lot of admiration for her. I spoke up and said, well, you know, I took off work for 8 weeks to go to the hospital and sit with her all day coaching her. (when you get weaned of life support, it is very difficult and I coached her everyday, when she was losing hope etc)
I know my methods are not direct but I know how my family works,. Things are said but not direct talk then everything just goes on like normal. However, if she ever mentions it again. I WILL at the moment say to her what needs to be said. For now, things are just back to the same as usual. Sure my feelings were hurt but I think my leaving her alone for a few days caught her attention.
THanks to all of you with all your support. Seems like everyone here has had similiar experiences. So I guess, as part of my learning curve, I now know this is just another normal thing. My first lesson I remember what my heartache over my sister jumping ship when I needed help. I remember coming on here and finding out that is a common thing for siblings to let one person to all the work. So again, I have come a long way from where I was on learning all of these things. Thanks to all of you warm people on here and the support and understanding which has helped me beyound words.
Star, I feel for you, I know you know how I feel. And I know exactly how you feel. You gave up a high paying job for what? your will be in my thoughts for you have probably the longest experience on this board for being a caregiver.
Min-shin, you have always been right there with your words of wisdom. Always remembering everyone's situations even when they haven't written in awhile. Thanks for your support.
Collete, thanks for the pat on the back, you are definitly the cheer leader on this board.
TiredDave, you said it all, PEOPLE FREAK out over MONEy.
Thank you all for your stories, they really helped me a whole lot. We are all in this togeather. United by our situations. Nobody could ever understand without walking in our shoes. It is the toughest job we will ever undertake. I hope I can get through it all in one piece and come out on the otherside in one piece. Sometimes I wonder, espcecially when I look in the mirror and see how much faster I am aging. Before I use to be calm, happy, joyful. Does anyone else feel like they are aging quicker then they should? I look at the dark circles under my eyes and scare myself sometimes. Look like a darn racoon. oh well, everyone have a good day, minute, second however y ou have to get through it.
Debbie
Edited: Sunday August 08, 2010 at 5:38 PM by motherskeeper
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Star1
Posts: 299
Joined: Sep 2008
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Monday August 09, 2010 9:36 AM
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Sometimes I feel as though I am aging, but, on the other hand, I am..........I will be 58 in a week or so. I think the hardest thing for me is just the feeling that the best years of my life are passing me by and I will never get them back again. If he were to die today I will be a 58 year old woman with no income and who has been out of the work force for 16 years! That's not a very pleasant thing to look at.
Debbie, I always go through the same thing with people telling David what a miracle he is. I know if he had been left in a nursing home all these years he would be dead! The nurse that was here the other day mentioned how young he looks for 65. He commented to her that I say it's because he has no stress, and he told her he refuses to let life stress him out. What a joke!! I said to her 'yes, it's easy to have no stress when you have NO responsibilities!!' Of course he has no stress, everybody does everything for him. He doesn't have to pay the bills, mow the lawn, raise the kid, clean the house, cook, do laundry, make sure the medicine is refilled, make the appointments, get the car inspected, carry in firewood, plow the driveway, shovel his ramp, put hay in the barn [for his horse], clear the fields, split firewood, run him and Danny everywhere, YOU GET THE PICTURE, he has no responsibilities. Oh, yeah and did I mention that while I am taking care of all the above things, I have to dress him, bath him, give him food, put him in bed, and jump when he wants something? Believe me if it wasn't for our home health aids I would have died from sheer exhaustion by now.
I wish I could escape for a while! Pam.
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rzxq2y
Posts: 1603
Joined: Jun 2009
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Monday August 09, 2010 10:52 PM
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Hi, Debbie, Good for you to try some tough love. Also whether direct or not, what it matters is whether it works or not. Each family has a different way to deal with communication, and I assume that none are perfect.
Hi, Jenafor (Raisingme), I am somewhat confused. Your profiles indicated you are from the province of British Columbia. But you listed the country as United States. My guess is that you are from Canada.
Hi, all, the Canadian system is quite different from what is in U.S. Here is U.S., we do not get respite, unless you have a lot of money. Some nursing homes and assisted living facilities to provide respite services, but it is very expensive and very little vacancy.
Best Regards,
Min-Shih
Edited: Monday August 09, 2010 at 11:05 PM by rzxq2y
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raisingme
Posts: 16
Joined: Jul 2010
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Wednesday August 11, 2010 8:43 PM
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Yes, I am from Canada and after reading through these stories I am feeling very blessed to be here. We pay for respite here to but it is subsidized, it is based on ability to pay and there is a limit on how much the client can be charged, with the government picking up the slack. So if it was for instance $2000.00 for two weeks just to use an example and the maximum allowable charge is $1500.00 if your income was in the top bracket you would pay $1500 and the government would pay $500.00. If a person was in a lower income bracket they might pay $800 and the government would pay $1200.00. The same is true for respite and care aids that come to your home. We pay 'x' amount of dollars per visit based on income and the government picks up the rest. Also, there is a maximum that can be charged per month. There are limits placed on how often a caregiver gets respite - right now it is 4 hours once a week. Anything over that and you are dealing with private providers at a much higher, non subsidized rate.
Considering the millions upon millions of dollars US caregivers are saving insurance companies, the governments and society in general the sane thing to do would support them in such a way that they can continue to care for their 'charges' rather than using them to the bone.
The thing with caregiving is that it is carried out in such isolation that organizing as a group to lobby for an improvement in the state of affairs is a monumental task that would have to be undertaken by those already buried with monumental tasks. Being a caregiver is like going into a state of non-existence.
That being said, the demographics in North America alone show that more and more family members will be needing care than at any other time in history. It is to the point that the majority of the population is going to be either in care or caregiving. And that populace needs a voice. On both sides of the border. Even though things are better in Canada from the point of view of getting some support, it is still far from optimum. In two countries that few themselves as been 'advanced', neither are very 'with it' when it comes to dealing with the facts and the realities faced by hundreds of thousands of their citizens.
When I read the stories on here I would like to bundle them all up and stick them down on some high mucky, mucks desk. Trouble is they would probably feel totally overwhelmed by it all. And I would say to them, 'welcome to the club!"
It took me 5 years to wade through the system to get help here. Your wheels have to fall right off your bus before anyone listens. Until I started doing a little research I had no idea there were so many of us.
And I am getting a little frosted to see that there are people who are collecting data from forums such as this for no other reason than to make a living going around giving workshops to 'inspire' caregivers rather than devoting any energy to getting them any real aid. It is a pretty sad thing when the only hope for respite for a caregiver is to have their charge readmitted to hospital as the situation degenerates. The only way that I finally got help was the last time my husband was admitted to hospital I absolutely refused to take him home until I got some help. And I am fortunate that I live here so that I was able to take and hold that position! I have no idea what would happen should one of my American counterparts try to pull that one.
I have nothing but the utmost respect and admiration for you all!
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