What makes you feel guilty?

I feel guilty whenever I lose my temper -- it's not that dad is hard to live with but he is slow and when I feel stress I get more cranky and sharp with him than I ought to hurryng him along. He can't help it! so I feel guilty for being shortempered. how can I stop it???

I feel guilty that I'm not doing the caregiving with a more loving heart. My mother has always been my best friend, but Alzheimer's has taken her away. My father died a little over a year ago after a yearlong illness. He had been caring for my mother until then and I feel guilty that I didn't know how hard it must have been for him. I feel guilty that I had to quit my job to care for my mother and I can no longer help support my family financially. I feel guilty because I'm afraid my marriage will suffer to the point of no repair. Although my husband is more than supportive, he is trying to work and care for his own 88-year-old mother while I spend most of my week a 45-minute drive away from our home in order to keep my mother in her home as long as possible. I feel guilty that I'm not taking care of myself like I should be, but my mother can't be left alone and I only have respite care for three hours a week, which I know is more than a lot of people get. You name it and I can feel guilty about it and I imagine that many caregivers are the same.

At times I feel guilty when I do not have enough patience with my Dad and he can not help the fact that he has slowed down and can't keep up. He tries so hard to be considerate of me at times and then there are times when it seems he forgets and I will be out away from him for awhile and the cell phone rings. He does not realize that he can not be left alone for any length of time so when I am out I hurry so I can get back to him. I try so hard to be a good caregiver and have done research and reading to try to do my best but I don't think I am alone. It seems the little things in life are what makes him happy and I have to remind myself of that. A few Bananas or a Frosty and his day is made. When you feel you can do no more just do a little thing and your day and Heart will be full. I do not know  how I will feel when the day comes when I no longer am a Caregiver.

Is this like a confessional or something? lol   I feel guilty when I'm short tempered with my husband, which is too often.  I'm mourning the man he used to be: the carpenter, the plumber, the jack of all trades (now I'm in that role of getting things done around the house).   I feel guilty when I wish this was over - I'm told that people with Parkinson's can live 15-20 years with the new meds.  I think I'll be dead before he is; I'm 52 and he is 67 - 20 years of this & I really will be worn out.  I believe he also has some dementia which makes it difficult to make decisions because on a "good" day he's questioning why I did some of the things I did.  We also adopted a granddaughter who is now 11 and has CP, seizure disorder and global delays.  They don't get along anymore and she doesn't understand why poppa doesn't play with her anymore.

I feel guilty when Mom says she is not happy in her assisted living place, or sighs and asks me, "Is this it?  Am I going to die here?  Can't I ever leave?"  Those are her lucid moments...at other times, she tells me about the "imaginary" people she keeps finding in her apartment, who she has to throw out (she's about 4/10", about 100#, and couldn't push a toddler around, much less the adults she keeps telling me are breaking into her place!)  I visit her usually 3 times a week, despite having 2 jobs, 4 kids, (2 in college), a husband, and a brother who only goes to see her if I let them add the cost of 2 dinners to her montly bill (for him and his girlfriend.

I moved both her and my Dad there, when he was dying and under hospice care, because it was very apparent that she was no longer able to care for herself...husband tells me if I hadn't moved her there, she'd probably be dead by now.  But I love her, and it pains me when she is not happy, and blames me for it!  I have POA, and pay all of her bills...I sold her house, and pray every day that her money will last as long as she does!  But the guilt weighs me down, and keeps me from enjoying being with her...I hope I'm doing right by her!

The wondering if you are doing the right thing is maybe one of the hardest parts of being a caregiver. I'm willing to listen to any advice, but ultimately you still have to make the decisions. It is never easy and you never really know if what you are doing is right or wrong.

Wendy, this is just to let you know that my Dad has Parkinsons and he was just diagnosed with a form called Lewy Body Dementia (this may help alot of you to look it up). He had been Dx with Alzhimers and all of the meds were making him crazy. The new Dr took him off all of the meds one by one nad now he is on two and he is back to his old self (Fiona look into this). I was so happy as my Dad was having full blown conversations with people that were not there and he was having vivid dreams at night that he said were real this is all part of the Lewy Body. It is a different form of Parkinsons and you will be amazed at what you learn from this website, www.lbda.org [lbda.org].  My Dad's Dr here is older and he was Chief of Neurology in a Hospital up North so I was glad to get him especially in a Nursing Home. I had Open heart surgery last year at 47yoa and 2 brothers that did nothing with my Dad so I know what you are going through. Please keep your chins up and have faith, I thought things would never get better and they did in about 3 weeks.

Karen, thanks for the encouragement.  I've heard the words Lewy Body but never looked into it.  I'm gonna check out the website right now.  Chins.  haha  How did you know I had more than one?  lol

Hey Wendy,

Chins came out by mistake and was for everyone but I know the feeling. I have gained so much weight with being a caregiver due to the stress and emotion. I hope you find that website helpful as I ran upon it just looking. It is a wonderful place to get info. My biggest thing with my Dad was the day I walked into the Nursing Homee and he did not know me. I came home and cried for hours. This is when I changed Dr's and it has been a marvelous thing to have done. I hope this helps. If you need to vent you can email me at ktr1@tds.net and I will help anyway I can as we are too young to be going through this. I praise you for raising a child and having the strength to stay by your hubby's side. You are a Guardian Angel, email me sometime.

I get a big stab of guilt when I back off.  I have a cushy situation compared to many.  Mom can afford help, and several CGs really are better than me and love to work for her because she is a sweety.   When one calls and says they could take my shift if I liked, I now say yes.  I can justify it a million ways.    I used to pull my shifts over 60 hours/week at her house(you can sleep when she sleeps, eat when she eats, not hard, but as Mom gets even older and has more things go wrong, the facts are that these experienced people are better than me with the actual body care.   I do all the transport, shopping, bill paying, plant care, maintenence planning , visit almost every day, and payrole, but these other ladies are better than me at taking care of her.  

I do my best for her, but I am not always the best for her and I feel like I am letting her down.

Hey Ann, your circumstances do sound lucky, but I understand how you feel about letting your mother down. You're right, often there are other people much better than ourselves that can give our parents care. Don't beat yourself up about relying on those people. Currently, I'm in a situation in which we are getting some temporary in home health care. All of these providers give me instructions on what to do and basically just say "You can do it." I'm not so sure I can. So if you have others to help, don't feel bad. You will be able to have more quality time with your mother instead of all the drudge work. For me, the letting my mother down guilt comes from feeling that I'm not doing a good job AND not doing it as willingly and lovingly as I feel I should. Shouldn't I be happy to care for my mother? After all, she sacrificed for me, shouldn't I sacrifice for her? Lately all I can think about is how long is this going to last? Then once that thought pops into my head ... well, talk about guilt. That makes me feel like I'm wishing her dead. I have to rely on my faith and remind myself often that God will not give me more than I can bear.

jw812, thank you for the positive words.  Mom is 94 now, severe(really severe) arthritis, hearing loss, macular degeneration, past TIAs and syncope, otherwise her heart is good, lungs, kidneys, AOK.   She amazes me that it is possible to keep her in good humor.  Everyone now on staff 'plays' with her.   Finding people and keeping them all on the same page is overwhelmingly odd.  I am just an ol hippy, I gave up my garden for this, yes, I look at the weeds and resent it.   I am not by nature a 'manager' of any sort, I don't want to be, and I have to be.

Sweetheart, I have been at this elder care stuff for 9 years now to some level, starting with when Dad was diagnosed with a non hodgkins lymphoma on his spine in 2000 at the age of 86.  Every new issue and I am back to clueless,  pressure sores, med reactions, rashes, diets, incontinence, they lost the TV remote,  a new hire needs advice and calls at 4 AM,   finding a new doc when one is clearly not right ,  telling her a sister, brother, dear friend,,, passed away (and the time I had to tell her her first born child died, so afraid for her reaction I couldn't mourn for my older bro). 

  And yes I do think I have it easy.    I can't imagine how I would put one foot in front of the other without Daddy's financial planning that has allowed her to have paid CGs. AND that she seems to be almost magically blessed to have the CGs she does.  There are a few I wasn't happy with or that weren't happy with her, but the core group is amazing and I bend over backwards to make sure that they continue to be there for her.  Lots of perks.   

Still I wonder, when...., when I will not be on call 24/7,, when I will be able to leave town and stay gone for more than a day,, when I won't have to be frantic about the best way to avoid -treat urine scald, ,   AND hoping that I never have to use this particular education again.   All my life, I was excited to learn new things and how I would use my skills.   Not this time.   Useful, yes, but not of my choosing.   AND I have no children, no one to do this for me, so if I can't, when I can't, do for myself,  what then.   

jw812,  believe me, the question of how long, when, has to come up in any rational mind.    It is not the same as wishing she was dead.   You will know the difference, if it happens, and it is forgivable .  As humans, we want to plan, and eldercare leaves us in limbo and there is a lot of stress in that.     I want to make a plan to go somewhere in June, but I know I am likely to get waylaid, and Hub is a bit resentful, so I am, too.  Resent=guilt +depression+sleep disorder++++.

This is a good thread, all of you hang in there.   I don't think anyone is here to find excuses, but ways to survive.   Most of us get hijacked into a weird and uncomfortable situation, and think we 'should'  be glad for the chance and feel like damaged goods when the JOY doesn't see us through.

Ann you are so right. I have not been away for more than a day in a long time and it was due to my in laws passing away and my Dad made me feel so guilty for leaving. When I had my first Heart attack in June 2008 his concern was his laundry, who was going to do it, not that he did not have plenty to wear and then in August 2008 when I had open Heart Surgery his concern was his Meds as I kept them in weekly 7 day pill packs. My husband was so mad he could have killed him. He never came to see me at the hospital or called me, only when I came home. Let me tell you all do not feel guilty for anything you do for yourself as we do not know what each day holds. I have learned that we can only do the very best we can and no more God will only give us as much as we can handle and the rest we have to learn to walk away from. There were times when I was recovering that I wished God had taken me just so I could get some rest then I realized there was noone to take care of my Dad. We have no time to breathe much less anything else so lets all just keep going and remember one day we will be rewarded for what we have done and the good will come back to us.Take care of yourselves and each other is my motto and remember we are not promised tomarrow only today. NO GUILT ONLY PLEASURE as it will be gone soon and then we will miss it. Good Night all.

I always felt guilty especially as the years went on.  I had always worked in nursing homes and seeing the way some of the residents were treated was horrible.  I turned a nurse in before and also called state on her,  well needless to say she did lose her job as well as her license.  I could not stand co-workers tell someone that they would be right back and would never go back or someone would say they had to go to the bathroom and they would just ignore them.  My biggest pet peeve is when the nurses themselves would say we never told them something.  I finally after 17 years walked out of a N.H. and to this day  will probably never go back to one.  I am not doing home care which is alot better because it is one-on-one care and you are not being rushed around or thrown around like a sack or potatoes so to speak.  Much more relaxing.

Mesa8baby, Are you a caregiver for a parent or did you just work in Nursing Homes??? The caregiving you are doing now is that for outside family members or a parent?? I think you will find if you are a primary caregiver to a parent which is what we have all been talking about that it is much different than caregiving in a one on one basis. When you are a primary caregiver there is NO relaxing so I do not think you get the jest of the question. Please read all of the responses and you will see what I mean. There are some N.H. out there that do have bad care and that is why you have to do your homework. My sister in law has worked in one in upstate NY for over 20 years and she would not leave for any amount of money as she has been offered better jobs elsewhere. You will understand more when you  become a primary caregiver for a parent.

No Karen,  I do understand  the jest of it all. When yoiu do N.H. like I have and some of the residents do not have any family or family members just come and drop them off and don't come back it is a very upsetting thing.  I just got done taking care of a person who was 66 years old, last year he was a picture of health, and when i saw him there was nothing to him.  His family was so devistated and were so exhausted.  Yes,  I DO TOTALLY UNDERSTAND WHAT IT IS LIKE.  I cared for those residents like they were my family.  I cried with them, held their hands as they slipped away, did post mortum care need I go on......believe me i'm sure not in this for the money because if I was I would be rich by now.

Let's recap here.  

Anon feels guilty for being impatient to the point of losing her temper with her very slow Dad when she knows he can't help it.   But every day only has so many hours, and there is so much to do.  Dad being so slow eats up her chances to do anything for her self.

Wendy, bless your heart.  There are extra burdens and emotions that are carried by a spousal caregiver even when the spouse is a good bit older.  You watch your dreams for your later silver years going down the tubes as well as frantically trying to learn how to cope with a disease you had only heard of on the news, and trying to keep some things normal for that child.  You are probably exhausted and scared. 

Fionna is guilty because her Mom is safe and cared for but isn't happy.  She resents her brother because she basically has to pay him to visit their mother while she does the work to see that Mom is safe and in a good place.  And Mom wants to be someplace else.   Honey, you can't make another person be happy.  You can't make her young again, or give her back her husband.

 jw is guilty of not having a functioning crystal ball knowing full well if she chooses the wrong hand it is her loved one that pays the price.    But here is the real insult in this. . . You will never know what disaster may have resulted in choosing the other hand sweetheart. . . In any other shell game in the world you would be a phenomenon to have  found the pea that often.   

mesa, I am not quite sure you said why you feel guilty.   Is it because some of the residents of the NH had  no other advocate and you left them for private duty?   That is sort of what I thought you were trying to say.   If so, please there is only so much of any of us to go around.   How many times can you beat your head on the brick wall and not be in a daze. 

and Karen,  whoa, baby, you actually felt guilty for not being there when you had a heart attack and surgery!!  You feel guilty for wanting to rest and take care of yourself so that you don't leave your loving husband to be a widower!  You feel guilty for resenting sacrificing your health and maybe your life for a man who can no longer recognize it and is happier with a Frosty  than with the fact that you made it through surgery!  Honey, you are amazing.

OK, maybe I read too much between the lines here but  to sum it up,,,caregivers are guilty of being tired and losing patience, sacrificing to the point of losing their own health,  resenting the loss of a chance at their dreams, not being able to see the future, not being able to restore the health and minds of a loved one even when aging and the diseases defy researchers, doctors, and pharmacuetical companies.

 We are guilty of being human, helpless, angry and in pain, and being 'not' God.   Gotcha.   Me, too.  Sorry guilty as charged.   You are all heros, and I will tell you that if no one else will.   Inspite of it all, you do this job until you break.   In spite of fear, exhaustion, and lack of thanks.    Well, I thank you.   I can't imagine what would happen to these people without you as an advocate.