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I'm the daughter of my father, who has acute dementia.

We put him into a nursing home last year after he fell and broke his hip at home while my mother was at work.

My mother has always been in denial about my dad's memory loss. She left him at home alone for two or three years while he was going through serious mental degeneration. He wanted to stay at home, but it was clear he was not safe. He once got into a car accident because he tried to drive to his old house about 45 minutes away. And yet, she left him home alone for two more years.

I eventually convinced her to get him a day nurse to come in and help him with things - apparently he got to the point where he would forget to eat.

She cannot deal with it, she is in total denial. I have had to convince her and guide her hand for every health decision he has needed. I had to convince her that a nursing home was his best option and find the home with her.

I am 24. I just graduated school. I'm trying to start my life. I moved away from our hometown for my career. I just want to be successful. But I feel like my mother can't take care of herself or make good decisions for my father.

I feel so guilty now for being away from home. And I feel like every time my career doesn't go well it makes me wonder why I"m not back at home. This is tearing me apart and hurting me.

Why were my parents so selfish to have me so old? Where can I find other people my age going through anything remotely similar? Why has all of the responsibility fallen on my shoulders, and yet no one in my family even recognizes it or thanks me and treats me with gratitude?

Why can't my mom overcome her denial? Is it my duty to keep making things right, silently? I am afraid if I don't guide things, the end of my father's life will be unpleasant.

This whole thing has made me think of my mom as weak and that makes me very sad. I'm all torn up.

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I made some of my post while I was in a huff. I don't think my parents were selfish for having me when they were older; I am glad to be alive. I don't think of my mom as weak; that is just the part of me that is hurting and wanting to lash out. I know that this has been so hard on her - losing her partner.

And yet, she is so unwilling to seek or accept outside help. I wish that we could do therapy or counseling, but she sees it as a personal failing.
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justwant2help, wow! You seem to be an extremely perceptive and articulate young woman. I don't know what career you have chosen, but I predict success!

This is a great place to vent. We get it. And we get an occasional outburst doesn't mean giving up or not loving the people we care for.

Occasionally there are other very young caregivers on this site, often caring for a grandparent or an aunt, etc. I'm not sure how you'd search for that but perhaps you'll come across them while browsing. You are not alone, but you probably feel isolated.

I'll say to you what I often say to the other young caregivers: There are very specific developmental tasks you are intended to complete in this stage of your life. Just as a baby learns to crawl and a toddler learns to walk, certain things happen in a given order. This is your time to establish the basis for your working life. You may change your career several times throughout you life, but the foundation starts now. This is a time for establishing the basis of your adult social life, for finding out (often by trial and error!) what kind of individuals support you and bring out your capacity to support them. This is when you find a life partner, or decide not to. I hope you can do all this and be helpful to your parents as well. But you need to balance things so that helping your parents doesn't interfere greatly with what you need to be doing in your own life.

Is Dad now in a NH? How long ago did that start? Is your mother's need for your guidance been reduced somewhat?

For a person with dementia to be in denial can work out OK. For the primary caregiver -- for the spouse -- to be in denial, OMG, that seldom works out well. I am hoping that now that Mom doesn't have day-to-day responsibility for Dad's health care that life will settle down for you. Please keep us informed!
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Oh, and about your title question, "How can I not feel guilty?" -- you probably can't. Feeling guilty just goes with the territory for caregivers. If you are doing something for your parents you'll feel guilty that you cancelled something with a new friend. If you put in long hours on a work project you'll feel guilty that you are neglecting your parents. You can't win. The guilt is unearned and unfounded -- you "shouldn't" feel guilty, but if you figure out how to accomplish that, write a book. It will be a best seller, I assure you.

You know that courage is not the absence of fear -- it is taking appropriate action in spite of fear. That is kind of how guilt feelings work. You cannot let the unearned guilt feeling (or fear of feeling guilty) dictate your decisions and actions. Continue to do the best you can, and push the guilt to the background.
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I LOVE that definition of courage. Courage is taking the appropriate action in spite of fear. In taking care of my elderly mom, I have had to take action several times, in spite of being unsure or afraid. I have beaten myself up a lot over choices that I have made--even though I logically KNOW that the choices were the best for my mom and for me. This definition of courage lets me see my actions in a little bit different light. Thank you. And to all caregivers out there---there is no "one size fits all" manual for this caregiving stuff. It is not easy and it is not for the faint-hearted. Do the best you can--ask God for guidance and make the best decisions that you can. That way when this season is over, you can look back and know that you truly gave your best to your loved one.
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Just wanttohelp - you have been given some wonderful advice from both posters above; listen to it; absorb it - they are "right on". Go with your instincts as you have been doing and try not to beat yourself up - believe me, from someone who knows; it does no good. You are a wonderful daughter - acknowledge it and move on. Take care and many blessings to you.
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Dear Just Want To Help: I agree with the posts in this forum. You are a very mature young lady who has "stepped up to the plate" to help your mother and father. Caregiving is extremely hard and frustrating. Unfortunately, feeling guilty is part of the territory of caring for a parent. Please know that you are doing something that is the most gratifying thing in life-helping other people.
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The only thing that I would add to all of the above is going to see a therapist to help with the emotional buttons related to this guilt, to help you with boundaries, and to help you move on with your life. Other than the denial, how would you describe your mother's level of functioning?
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I was your age, 10 years ago, and I did leave my potential career to care full time for my mother. Even today, when things aren't going so well in my "new" life, I always wonder what could/would have been ... It's tough. I didn't have another parent to help like you have, and I so wish for you that parent would take all the burden off of you. Don'f feel guilty. Look what you have accomplished! You've established help in the home and you are a loving and empathetic person who wants the best for everyone ...jus don't forget yourself in that equation ok? And oh, does it not hurt to get no recognition and support? I still deal with that all of the time. Somedays it matters more than others, but it always drags me down on some levels. Anyways, I think the advice of a therapist is super wonderful! It's a great forum if even just to vent and get the support of a 3rd party... and who knows, maybe your mom too can come and take some baby steps towards accepting the situation.
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sak9, I find your comments not helpful at all. I'm not even sure if you read her post all the way through since you said to consider placing her 'mother'. Her mother is in denial. Her father is the one with acute dementia. Pity party??? Hardly. You seem to be laying more guilt that is truly not deserved on this young woman.

Hugs to you, justwant2help. Others have given you some very good advice. Keep talking and venting. We'll be here to listen.
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sak9, I realize how you feel about responsibilities of the family to their elder parents. I agree with you that we need to find better solutions, but we also need not to lose empathy with younger people. The world is not an ideal place. If everyone acted as they should and we all pulled together as a community, we could take better care of each other. The way that caregiving is now, one person carries the burden for the family, often at great sacrifice to their own welfare and financial future. We might expect this from someone after they have their family and a bit of retirement savings, but not from someone just building their life. Sympathy and empathy has to go both directions.
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Guilt - that is a big one. I am feeling guilty right now because I am reading this blog instead of making my Mother breakfast. The guilt just seems to hang around. A lot of this is my perception that I am not doing everything "perfect". There is no perfect way to take care of an elderly parent except with the most love and patience you are able to muster on that particular day and we all fall short. I do not think that a 24 y/o has to give up her life for her parents. I am 58 and feel that my own life has been cut short due to caregiving responsibilities - so at 24 ?? You still have so much life ahead of you. Come here and vent all you want. I have written some posts when I was frustrated that I reread and felt I was too harsh. It is just venting and it is OK. I feel that sak9 comments were very judgmental and I do not come to this forum to be judged. I come to vent and find some solutions that have worked for others. Many hug- hang in there.
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I agree that sak9's comments were judgment and harsh. Yes, we need to be there for our family and help them as much as we can, but having feelings of guilt or even anger is a natural emotional response for a lot of people when it comes to caregiving. Don't get me wrong, there are positive emotions of wanting to help and knowing you are doing all you can for your family member who is sick, but we are all human, and we all make mistakes. For pete's sakes, only the good Lord Himself is perfect. As for all of us, all we can do is try our best, and we will fall down sometimes, but we just gotta get back up and keep on trying. God will guide us, but please don't place the burden of perfection on those who are already trying to do the best they can. That is extremely unfair, and the Bible does teach us about not judging others or we ourselves will be judged.

Justwant2help, I am not as young as you, but I am only 35. I just finished college about a year ago ( I got a late start :) ), and I too thought I would be able to start a good career and do all I planned. Sometimes our plans do change, but from what I read of what you said, you sound like you are trying the best you can. You have every right to have the jumble of feelings you are having. Believe me, I have gone through a lot of them myself. I pray for only the best for you and your family. God bless you.
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Justwant2help- your post was like a flashback for me. I was 31 when my mother had a cerebral aneurysm. She survived, miraculously, but the next 13 years were tough on her as the damage from the aneurysm and subsequent seizures led to dementia. She was in her early 50s when this started. Around the same time, my husband and I faced a job issue that required us to move. There was lots of guilt, I won't lie. But, as Jeanne pointed out, we were young, with a future to build. We made what we thought was the best decision for us. My father was also in denial- my mother also got in to an accident driving when she should not have been. Thank goodness no one got hurt. My father ended up getting in home help. My siblings and I did 2 things- we always let him know we supported his decisions. If he wanted to place her in a facility, we were 100% behind him. Secondly, we did spend several years where my vacation time (and my siblings) was spent traveling home, sometimes at a moments notice. When there was an emergency, we never left my Dad alone. Other times, he just needed a visit to keep his spirits up. I won't lie, I often questioned if what we did was right.
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Take care of yourself first. I can't emphasize this enough. If your father is in a NH or AL; then that is good. As for your mom; tell her you want to sit down at next visit and have a heart to heart.
1. Use the internet and find out info on the Aging care or Senior center for your mom's hometown. Call them or visit them (just you) and get some information on counseling, support services, etc. for your mom.
2. Have the one on one with your mom; tell her that you are starting in your career and won't be able to help with day to day responsibilities; provide her with the contact info for the senior center and encourage her to attend counseling and support groups.
3. Can you contact a close friend/relative/clergy of your mom's that you feel comfortable asking for help in approaching or supporting your mom?
4. Move forward with your life. Realize you are not responsible for your mom's perception of her situation -- neither can you change that no matter how rational you sound. Parents will always want to be the parent/adult and think they know best. (I'm 56 and feel like I'm 12 everytime I'm with my dementia mom -- she refuses all help and good judgement).
6. One great piece of advice I got on this site and it has saved me "We are not responsible for our parents decisions. Parents have the right to make their own decisions; even if it is a bad one". My mom is making many bad decisions these days; I counsel her but I am learning to accept her decisions, even bad ones.
6. Find a local senior center in your area (where YOU live) and check in with the director to see what counseling or support groups might be available for you. Attend if you can -- it will help your guilt.
7. Come back to this forum and vent all you need. We're here and wishing you well. Live life and love it; you deserve it and it is your right.
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Your mother might be suffering from depression or even medical problems of her own and it might be affecting her ability to cope with the situation and to think clearly to make good decisions. Is there anyone else who can talk to her and encourage her to get checked out to see if any of these problems so she can get treatment if needed? Yes, this is another assignment for you but hopefully one that will eventually help you in the long run.
See if there are any community support programs that you can get involved with her. You don't say her age or condition. or whether she is working - if working there might be a work related employee resource or counseling service. You need someone else to start helping to get the emotional burden off of you so you can concentrate on your career and life and stop worrying about your parents. Regarding making decisions, dealing with aging is very hard to do, as you and your mother are finding out and not everyone has the same abilities to deal with it. I'm not sure this is a weakness more than a survival thing, b/c caregiving can drag you down. If you look through this site you will see that many siblings of caregivers have "fled" the scene.

and yes, you are justified to question your lot in life and it is not selfish to do so. it is healthy. But don't dwell on it, instead try to take positive steps to improve the situation. Since you obviously care greatly for your parents and worry about their future and safety, there is no reason to feel guilty.

Regarding finding others in your situation, first find this story by searching these words
The Surprising Caregiver: Your Grandchild

and also
look up this organization
(although started for younger children it has resources that help every caregiver) The American Association of Caregiving Youth (AACY®) is a Florida based 501 (c) (3) non-profit corporation that began serving the greater Boca Raton community in 1998. Today AACY® is the only organization of its kind in the United States for addressing the issues surrounding the silent, vulnerable and hidden population, conservatively estimated to exceed 1.4 million children, who provide care for family members who are unable to manage life independently.
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I think in situations like this we must be very practical so that no one is thrown under the bus. In today's economy, if you have a job don't get rid of it and if you have a college education do something with it before you age out of the job market or people will not hire you because of not having worked in a long time or have never worked at all. Thus, while it sounds honorable for a young person to set aside their career or education, they are setting themselves up to be broke and homeless by doing so and what reasonable parent would want their adult child to end up like that.
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Wow, justwant2help, you've gotten some really good (and compassionate) feedback here.

Please post again and let us know what you are trying and how it is working out for you. We care! (And we learn from each other.)
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You poor thing! I had a similar role, but not so young. If you have insurance to cover it, I'd find a really good therapist that you feel comfortable with and perhaps try a support group even if you are much younger. You deserve a life!!! I know that is easier said than done, bc I struggle with the guilt all the time, so let's support eachother.
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Everyone, I thank you so much for taking the time to read my post and empathize with my situation. This year has been the first Christmas we have had since this new arrangement has become permanent, and I think all of us have been doing a lot to get used to the idea of what is now "normal" in our family.

I'm glad someone else empathizes with the frustration of not having contributions acknowledged. I do not make a big deal out of it but it does bother me sometimes, but we all do try the best we can and I'm confident that deep down I am very appreciated.

Because I am the baby of the family, I mostly have to rely on the power of suggestion to get things done. However, that doesn't make me feel any less responsible; I think I am the most in-touch with my emotions out of my family, and I therefore feel a responsibility to make sure my mom and her sister take care of themselves.

I used a number I found on this site to contact my local Aging Center (who knew they even have those??) and I'm hoping to find out about local support groups for family members of people with Alzheimers and Dementia. Eventually I hope to get my mom to start going, but I'll be gentle in my suggestions.

I got so used to always feeling alone. I've been feeling very down and depressed about it all since I was about 13 and 14. I like knowing there are communities out there for people like us. I know we'll all make it ok.

Thanks again for everyone who chimed in on this thread.
For those who asked for more details, my father is 74 and was diagnosed with Lewy Body Dementia about four years ago, along with Diabetes Type II. He has been mentally declining since I was 13.

My mother's approach and functioning has always been a bit of denial - trying to find ways to explain away aberrant behavior rather than considering a proactive, therapeutic approach. For the longest time, my dad's memory loss was just "diabetes," and then it was just something else, and then it was this, and that. I've always felt like my dad has been slipping but unsure of who to reach out to. He was a very stoic individual and I think that while he was declining he was unsure of who to ask to help.

Her functioning now is ok, but I still would like to see her finding new all-consuming passions. She still acts as though my dad is mentally present and aware of going on around him, but he is not. She visits him every day in the nursing home and feeds him lunch or dinner. She talks about him to people like he can still remember things (although not well) and mostly is having issues "getting around." She expects my sister and I to visit him every day when we are home, or at least to try. I do not mind; like I said I think we're in a transitional period as a family.
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I think that as far as counseling goes, my mother has a large stigma attached to it. I asked her to send me to counseling when I was 15 and feeling very depressed about this situation, and she refused - saying they would only medicate me and wouldn't help. (Yes I'm a little frustrated by that!)

My mother is still working, but will be retiring at the end of this year. She taught as a reading teacher for about 40 years. I think she is used to having peoples' problems be solvable if they can just stick it out long enough and believe things can change.

The role I try to take on is researcher of options/encourager for change. I hope to get my family going to counseling. They are adrift and I think it would help. It's also a way to stay involved remotely (I am not in the same area).
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I meant to say my mom and MY sister - my family is made up of my mother, my sister (2 years older and much more involved in her career) and me.

My sister hasn't "fled the scene," but she is very self-involved. She helps if given tasks. She is just not very emotionally in-touch with herself.
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justwant2help, It sounds from your description that you have been depressed for 10 years or more and really need to see someone like a therapist and a doctor about it so that a combination of meds and talk therapy can lift you out of the ditch. This is even more reason to make sure that you are taking care of you. It would be great if your family would go to counseling, but don't hold off going yourself just because they don't.
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