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I am so grateful to have found this group. Reading many of the posts has left me feeling less isolated and somewhat normal (or as normal as one can be in this situation). I have been a caregiver since I was a child and I am now 57 years old. I had a close relationship with both of my parents. My mother had many health issues, so it was necessary for me to grow up rather quickly to tend to her health episodes. Both my parents are still living (mom 84 & dad 86). They have been as independent as they can be, but during the last 2 years they both experienced critical health issues (mom sepsis and dad a heart attack and also has dementia). Prior to that, I tended to my mother's frequent spinal fractures as a result of severe osteoporosis, from hospitalizations, to procedures and treatments. I've been primarily responsible for their health care, as well as financial and legal needs.


I had a good job at a university and hour and a half from my home. I left the job since it was challenging to tend to them and it was really taking a toll on me...and that's before both of them took sick. Two weeks after i left the job, my mother ended up in ICU with sepsis. I spent a year getting her on her feet - many procedures, appointments, etc. Also challenging since they live an hour away. I finally got mom stablized in late May of this year and my father had a heart attack in early June. Outside of obviously being concerned about him, I couldn't believe I would have to repeat the prior year of caregiving all over again...I couldn't bear the thought of having the responsibility of navigating another individuals' medical care and adding another person to my caregiver list! The intensity of both situations has been overwhelming for me. I actually cried that day as mom and i followed the ambulance carrying my dad...I said "I just don't want to have to do this again." My mother responded sternly "that's what children do." I was so angry!!!!


Dad has been on the mend and has improved greatly, although he has declined from where he once was. We had to get him a feeding tube, because he wasn't eating, which has helped. He has gained weight, but is not ready to have it removed...he still has to put on some weight and eat more.


They finally agreed to a chair lift in the house and a PT caregiver once a week for a few hours...I begged for help for more than a year. My sister moved in with them, but she works full time - I'm not complaining, however, because her being there has helped a lot, although her involvement only began within the last year. She also battled cancer last year and, quite frankly, isn't taking care of herself, so God only knows how long she'll be able to help.


SO, onto why I'm writing....I feel like I lost my life. I don't have a l ot of time to do much of anything. My social circle includes maybe 5 people. I feel very isolated. The one thing I do for myself is try to take a class at the gym a couple of times a week to maintain my sanity. I no longer have dreams anymore....i don't have the luxury of thinking about what i want to do, because I am so preoccupied by constantly putting out fires and tending to health crisis after crisis. When I begin to try to focus on myself, I seem to always get derailed by circumstances. The summary i provided above is just a snippet of the episodes...the latest episodes...but this activity has existed for most of my life, although it has intensified the last few years.. I am so burned out with all of it. I feel imprisoned by my circumstances and hopeless that there will be any change. While i love my parents dearly, I feel like I am wasting my life...I try to be happy and grateful for my blessings, but caregiving is very challenging. I feel guilty for feeling this way, since I love my parents. I know they won't be around forever and one day I probably will be happy that I was able to help them...and I do want to help them, I am just extremely burned out, empty and sad.

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It sounds to me like your mother has created an enmeshed emotional bond between the two of you since childhood which you are having a time breaking out of. Stop dancing her emotional dance by finding other care for her and your father.
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FGRINSTIX Dec 2019
Very insightful!!! Spot on!!
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Call your area Agency on Aging. They can do a needs assessment and may be able to provide a list of AL facilities in your area. I'm glad you are looking into AL. It is very easy to get burned out. You would still be able to look out for and advocate for them if they are in a facility, and know that they are in a safe place with staff there to provide the day to day assistance with their care.
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FGRINSTIX Dec 2019
Thank you, FrazzledMama!!! Great screen name, BTW!!!
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I think it's time you look into long term care for both of your parents, ie: Skilled Nursing. What happens to YOU now that you have no job and no life? Who takes care of YOU in YOUR old age, with limited Social Security, etc? These are the plans you need to make NOW, before it's too late!! If money is an issue, apply for Medicaid (for them) right away!!! They have far too many issues for you to think you can care for them yourself at home any longer.

Having dad on a feeding tube and extending his life is extreme........is this what HE wants to do? My mother has dementia and a DNR in place. The LAST thing I'd be doing is taking heroic measures to extend her life at this stage of the game. Dementia, in and of itself is a terrible disease, and one I would not want to live with myself. She lives in Memory Care Assisted Living, and has done so since 2014 when my dad fell and broke his hip and I had to place both of them in care.

Please look into long term care for your folks now.......you can't be lifting them up and throwing your back out, compromising YOUR health along with your financial security and well being. It's just too big a sacrifice. Sending you a big hug and a prayer for the strength you need to see the light and do what's right for YOU now.
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FGRINSTIX Dec 2019
Dear Lealonnie1 - Your points are well said. I have really tried to honor them not only as my parents, but as people. I never wanted to be a mean, overbearing daughter, so I've tried to enable them to maintain some degree of independence and continue to make decisions about their care - some of which is financially dependent upon their approval (like the care giver), since I am in no position to pay given I am not working. The feeding tube occured about 2 months after my father's cardiac episode - he just wasn't eating and was slowly dying. He does have a DNR, but it only addressed irreversible, fatal circumstances and didn't apply to his situation. His doctor recommended it given he was declining rapidly. Dad has made an incredible comeback, but his needs have also increased.

I've been finding it difficult to not be there for them in their time of need, even though I force myself to do so. For some reason I equate my caring for them with my degree of love for them. I realize I need to start loving myself more and get off this rollercoaster...just been challenging since its moving so fast!

Thank you again for your words and prayers!
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I am 59 and my life has been the same. "Empty and sad" is an understatement! My heart breaks that this is your life, as it is mine, also. I am breaking down today and taking the Prozac my doctor prescribed. I hope it helps me deal with everything. I had hoped to make up lost time after my Mom passed away 7 years ago and I retired early 4 years ago, but I now have my husband of 5 years (who is older than me and being evaluated for cognitive issues) and his 92 year old mother holding back all the now lost hopes and dreams and plans. The gym does help for a few hours a week! I am trying to remain positive but it is hard, as you know. I hope Prozac helps me cope!!
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FGRINSTIX Dec 2019
Hi, Monica - So sorry to hear you are in a similar situation as me. This is so unbelievably hard. I hope the medication works for you. Quite honestly, I don't know how I've managed for as long as I have...has to be the grace of God! I appreciate your taking the time to respond to my post. Lord knows its difficult to find ANY time! Everyone seems to have an "easy" answer to our situations, but its anything but easy when it comes to the life of a loved one. Sending you positive energy and will keep you in my prayers. xox
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My dear, you ARE a prisoner in a jail of your own making. Everyone wants to help their parents, but that does not mean that they get to drink your blood and use up the years you have left in this life. You need to step back, reassess, then make the arrangements you can for them; ie nursing home, etc, depending on their financial circumstances. Your mother is WRONG to tell you that “this is what children do”.
If you want to wind up alone, no friends, no social life, only this responsibility, you are on track, and sooner or later you will get angrier and angrier, then you may suffer further physically with this. I am also 57 and got myself unstuck from a situation that was not quite as bad as yours but was heading that way.. You have to do something and stick to your guns. . Your life does depend on it.
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FGRINSTIX Dec 2019
Hello, ML4444 - thank you for your comments. I realize your words were meant to help me, so I thank you for taking the time. While I understand I am partially responsible for my situation, I'm am not entirely responsible ...Mom was in ICU on a ventilator last year, Dad in and out of CCU for 3 months. Between the two scenarios, it was all I could do to deal with their care (appointments, procedures, etc.) in order to keep them alive. As you probably know, we have to manage our own healthcare these days - long gone are the days of having a dr that oversees all and has a patients' overall health and best interests in mind. I feel a little relieved since they finally agreed to a caregiver once a week (this will probably become more frequent) and I've had to delegate tasks to other people since I just couldn't do it all. I suppose my struggle is that its one medical crisis after another and I find that difficult to remove myself from this responsibility since they need someone to manage their care (both of them have complicated issues requiring a number of drs). I think they realize the toll it is taking on me given their willingness for outside help. I think an assisted living situation is on the horizon...I am really trying to get them both stabilized before that move and also because I need time to figure out where, when etc., since I'm still dealing with medical issues.

I don't want to end up alone, with no life or social life, but over the last year when I try to make some progress in that direction one of them ends up in ICU or CCU! UGH!!! Hopefully things will take a turn for the better.

Thanks again for your words and your response.
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I too felt trapped. My situation was actually far far better than most people. But, I had lost my social life, etc.

but..one thing I always wanted to do was live in an RV and travel the country. As I got older, I was going to be retired soon, I decided that I would start planning for it.

every night, after I had both parents in bed, I would be on the internet researching and learning. I was amazed by how many details went into every little thing. I learned how to measure and cut for cabinets, how to do DC electrical wiring, what sort of insulation to use and how to install, etc. etc. etc.

it kept me sane. As time went on, I was ready to buy a rotten out RV, and begin building it myself. I could only get a few hours a week...but I began.

my Dad passed in 2016, Mom in 2017. I have been living on the road since then. There is a huge community of people doing the exact same thing....I got my social life and community back in this process.

so, the long story is...look in yourself for what you would do if you could just go and do it. Spend the time learning everything you can toward that goal. Maybe like me, it will only be a couple hours at night when everyone is in bed.
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FGRINSTIX Dec 2019
Thank you for your words, Katiekate - they inspired me and gave me hope. Safe travels to you as you are living your dream xo
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One thing I failed to add is that my mother constantly complains. She always looked to me to lift her up but I just don't have much energy to deal with her negativity after the last few years. While she always thanks me for being there for her, her complaining negates her words of appreciation. I feel like no matter what I do, its never enough. :(
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Then tell her that she needs to stop.

Anyone that would use their children as free caregivers their entire lives is not a loving parent, sorry.

As your parents age their care needs will only increase, time to look into a facility that can meet their care needs and you can be an advocate and visitor.

Will your mom refuse and get angry? Yep, but oh well, propping them up so they don't have to do anything they don't want to at the very real expense of your life and wellbeing is selfish and you don't have to do it.
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