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.
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.
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!
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.
Hugs to you, justwant2help. Others have given you some very good advice. Keep talking and venting. We'll be here to listen.
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.
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.
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.
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.)
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.
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).
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.