How many caregivers have decided to make positive changes in their own lives while caring for elderly parents?

What a wonderful post. Thank you for sharing. I too have recently decided that 2017 I need to begin focusing on my own health but you have truly gone above and beyond to try and life a healthy life to the fullest. Great Job!

Zombie, you say My brother, well, if I go against him, I could lose my brother. It sounds like your brother is worthless now - AND a negative in your life. I say "lose him!" You are only 44. That is like 34 in today's world. I know it's hard to dig out of a pit, but please use the opportunity of a fresh start in a new year - plus the support here - to take a baby step toward reclaiming a life for you. I know it sounds impossible - like everything is against you - but take one little step, and then another, and then another to support yourself. Treat yourself with the kindness and encouragement you would give to anyone on this forum. It's not a cliche: You are beautiful. Act like it!

Your Mom and Dad fostered a very compassionate, sensitive, hopeful, encouraging, kind and caring young lady ~ YOU. Yes, we've all taken paths or made choices that brought us unsavory fruits. She didn't fail you in the matters of the heart, and thank you for sharing that beautiful spirit, reminding us that there are other things in life available to us and we don't need to "give up" caring physically, financially, etc., for our loved ones. Look forward to the ball, Cinderella ~ the ashes will always need tending. My Mom passed ~ and she is all i had in the world: she was bed ridden, but for all of my life, she's my best friend, travel companion, room mate, and so much more. i miss her and that is absolutely unbearable. The tidal waves of grief cut me to the quick, like an undertow, when i'm least expecting it. Continue to LIVE with empathy, joy and gusto. i do hope you write that book ~ i'll be the first in line to get a copy. Blessings to you ~

Zombie, Do take care of yourself. It's good for you as well as those for whom you provide care. My great aunt died 18 mos ago. Her youngest and unmarried daughter had lived with and had taken care of her for 12 years. The last four she was completely bedridden. Kay is 63 and up until her Mom died she had never had a date. She met a man at her mother's funeral (he had driven his mother). His mother died shortly after. He and my cousin have been dating since then. So there is hope.

I do have financial and health POA's for my father. That doesn't stop him or my brother from disagreeing with me. My father's still my father so I can't go against him. He can override his own POA. My brother, well, if I go against him, I could lose my brother. I at least get a verbal fight. Christine, glad you found happiness but I bet you had dates and friends before you were 40. At 44, I've never once been asked on a date. As a young adult, I would watch people flirt with my late mother, even guys my own age but they turned away from me. I am what I am.

Cinderella, Great post. I didn't take of myself until recently. Wish I had done it sooner. But, I'm working on it everyday.

Zombie, I got married at 40. Please don't count yourself out. You're young and a beautiful person to be doing what you're doing.

I am also dealing with grief about the changes and future - Christmas is so loaded with memories - and with a very stressful sibling conflict. I am determined to start taking some type of exercise class and pay someone to come in so that I can again enjoy some activities. I also have come to the decision that I will have to go no contact as some point with siblings. My mental health is important to me and I am determined to look after myself even if no one seems to care one way or another. Toxic people are not healthy and a waste of time.

To everyone on the site, looking after loved ones and doing the best you can, I wish you Peace, Health, Prosperity and Joy this season.

Dear zombie, get a POA for medical n financisl so that you can make good caregiving decisions for your dad and yourself.
If brother isnt helping he shouldnt have a say.
YOU were born beautiful. God made you. You are one of a kind and He loves you very much. You are the apple of His eye. If you want to know all the great things He feels toward you read His word, it'll give you peace n comfort in these hard times.

No happiness, moving forward, doing what I want for this caregiver. My father has advanced FTD and believes nothing is wrong. My brother won't allow me to hire anyone to help with anything although he hasn't lived here in 19 years. I hire people to wash my father against both of their wills. Otherwise, dad's house and my future house (the only place I've lived for 39 years) is falling in to disrepair. My life is on hold while my father is alive. We must sacrifice our lives for our sick parents. Many would say they sacrificed their lives when we were born. The difference is, we grew up (but never moved out in my case as I have been doing all the house and yard work for most of my life). If I had been born beautiful, I would have a husband and children to support me. All I've got is the cats.

The "yeah" sounds a little flippant. Not meant to be. Auto correct.

Hugemom, your husband sounds like mine except we have a diagnosis. I suspect there is a lot of depression going on although I do not know your husbands age. It seems to me he has lost the right to micromanage. It may not be his choice to go into skilled living. That said, ask your doctors about hospice. If he has gotten to the sleeping 20+ hours a day stage, he is probably very depressed or possibly at the end of life. Hospice will provide an aide a few days a week to help with showering and shaving, while you get out for a walk around the block! We take what we can get. Best of luck to you and we all understand what you are going through and how very hard it is. Yeah u too, Cinderella. Good job taking care of yourself. Keep up the good work.

Thank you for posting this Cinderella! My mom is a very sedentary 84 yo with dementia and CHF. She doesn't even try anymore. When she gets over-stressed (by over-thinking) I become the "evil one" to her. Of course, my brother is the 'saint'. I am with her 24/7 with no outside help. Today was so hard as she became nasty to me & I'm doing the best I can to care for her and also host Christmas dinner this year. I really needed to read what you wrote, and hopefully will make some changes to my life here now. I do put other's needs before my own, and that isn't fair....I feel I'm just treading water most days. Again, I needed to read this tonight.

Cinderella5001 - Yes, I am another one who is learning to take care of myself as well as I can. Back in the 1990's my stress was worse, as I was caring for a husband with cancer. I was also working full time because he was under my health insurance. He wouldn't apply for disability and Medicare till it was obvious to him. At that time I also took care of my health on all levels, because there was no alternative, and I accepted that.
I have not done as well this time around, till I heard others and began to reclaim my own life. I am happily returned from a week on the other coast to be with one son and his wife. My other son visited here last summer. What treats!

Time with family and away from home is a necessity for me. I took alone time to write out a do-able plan of health for myself. If I slip up, I will be kind to myself and keep at it. Be good to yourself as well. Thanks for writing.

JessieBell, I'm 76 and went through this both with my mother and with my husband. A caregivers group was crucial when it was my mother, and therapy crucial when it was my husband. Facing the pain, working out through relieves the excessive depression and helps that "I'm the only one going through this" feeling. Glad you've found your own way. But I was really speaking to Cinderella.

..and I need to throw in .. "mom2mom" ...enjoyed your candid and 'real writing. (And I totally get it, very similar things I have going on here) -

.... you can do this,you can go out there and find the beauty that there is in this world.. you've done your "time ... now live yours.

.... hi... listen, I for one didn't think you were complaining, and so what if you were, but you weren't.. I don't know you, don't know how old you are, don't know if you've been married, kids, or not... but to take from what you've written, first, your mom being 91 has been taken 'care of by you very well, and yes her genetics play a large part in her longevity, but she's still alive, which means both she and you' have done well and you cannot deny that. About your dad, and now your moms present state, logistically and health ... she' by what I hearing needs the 24/7 care (similar to what my mother will be when she gets placed here shortly) ... but this is really about you... about you trying to find 'you again. I think you need to understand that Releasing guilt, what ever guilt you have beit valid or not, is tough to do. And it sounds as if yours is not valid..it's simply tied to deep emotional "feelings of love and commitment that years of caring brings along with it's connections to two human beings in your life. When I used the 'even a prisoner can find a place in their mind to be "ok" example.. to me, not only does that express what I feel I am, but I believe that actually fits you. I'll tell you why; when a person spends 75% of their life taking care of someone your life is built around those or that individual… It is a smaller "space in which your mind and heart and time revolves around… So regaining your life is going to be hard, but not impossible in any way … Meaning your personal life about you, creating who you actually were meant to be independent (as you state you were a teacher) Will be difficult as you are and have been finding out. It's almost as if you are just now starting your life, as if your teaching years were another you, it's not, it's all you... do you have any idea how strong an individual must be to actually care 100% for another? I don't think you know, but you need to understand that not every human is "created to be strong enough to even begin to handle such a daunting day in day out situation, you need to perhaps start by giving yourself some credit for what you as a person have actually done for those two people in your life. Which is why I said like a prisoner because once they are released (one you now find that you are again facing the world pretty much on your own terms) they have to re-enter society… Re-enter the entire natural freedom of independence of "time and choices, and the whole "what do I do, now and next. Whereas when you were caring for your parents you created a schedule and a very tight one and had things in order day today by day probably hour to hour for years on end. And now because your mom has been in assisted-living (3 years you say) … You are still her life Cordinator you are still caring for her but you now have far more time to yourself that you are finding difficult to fill, perhaps. At least that's what I am taking from what you are writing. Actually, number one and first you should be honored for giving up a main part of your life, and I don't mean that lightly, and then secondly you need to be told and convinced how brave you are because you are starting your life over, while still maintaining hers to a degree.

Hi to Everyone who responded to my original post....My caregiving journey has been long and continues to be difficult at times. For those of you who sense that I am complaining, that was not my purpose. I was trying to explain how difficult it has been to recover my own life or something like a life. To maintain my sensé of living my own life I have to make difficult choices every day. I sometimes feel ashamed and selfish if I'm doing something that I enjoy like going to a movie, or going to my bowling league. No matter what I'm doing, I often feel as though I should be at the nursing home making sure that my mother is actually receving the care that she is paying for. This all started when I was about 50 years old. I'm 68 now. In my early 50s my father started to develop démentia. I used to visit with him on Friday evening so that my mother could go to bingo and have some social time to herself without having to worry about my dad. I enjoyed the time spent with my father. We would have dinner at home and watch TV or we would go out to eat and then go to a movie. We enjoyed ourselves and it made me happy to give my mother a break too. My father's démentia caused him to have behavioral issues like wandering and insomnia. My mother tried but was not able to cope with the situation and so we had to move my father to résidential care. His général health was not too bad. He was ambulatory. Nevertheless, my mother was overwhelmed with his care. Even though I stayed with them 5 days a week, this was not enough support. He remained in nursing home care and hospital care on and off for about 3 years. I can't even begin to explain how emotionally crushing this was for me. My father was a very good man, a hard worker, an excellent provider, a kind and loving person. It was heartbreaking to see him suffer. He has been gone for 11 years. I will never get over the fact that we had to put him in institutional care. After he passed, I continued to "live with" my mother five days a week. All this time, I still maintained my own home but only lived there from Friday night until Sunday evening. I could not just abandon my mother. At that time she was still driving and could take care of herself well enough. Some of you may understand that when you become "the assisted living component" for your parents, your time is no longer your own. It goes well beyond running a few errands, providing transportation to médical visits, and helping with grocery shopping. At that time I was also fully employed as a high school teacher. Going to work every day was sometimes a respite from being a full-time caregiver to my parents. Over the past 18 years I have sacrificed a lot. Yes, my parents certainly did a lot for me. Nevertheless, I have to force myself every day to regain balance in my life. I have to take responsibility for myself just as much as I have taken responsibility for the people I love. I have to make room for myself in my life. I have to keep myself on my list of "things to do". When my mother is gone, I want to be able to look back and say things like: I did all that I could do. I took care of her in a proper and respectful way. I took care of her in a loving and kind way. I did everything to the best of my ability. For those of you who are giving care to someone, you know that there is plenty of sadness, anxiety, and grief involved in this process. No matter how much you do, in your heart, you always wish you could have done more or could have done something better. At some point, the caregiver has to forgive herself for some things and remember to pray for continued health, strengh and the courage to face whatever happens every day. At this point I am doing my best for my mother and also for myself to create as "normal" a life as I can for myself in thèse circumstances. My greatest hope is that she somehow knows or will know that I did not abandon her and that I did my very best for her. And for all of you who are caregivers to someone you love, I also spray for your strength, health and wisdom to make the important décisions that will keep your loved ones and yourselves protected, well, and peaceful.

Thank you for opening up this dialog. I have a different spin on this. I have been the caregiver for my loving husband for 6 yrs now. In the last 6 months he has been in and out of the hospital and rehab with aspirational pneumonia several times. This has lead to his need for a hospital bed to make it easier on him and me. I did not need or feel the need to "get help". Before this, he was able to walk and enjoyed our outings. We did errands, went for lunches, but no more. These last few months have showed me that I can not survive without help in our home. I can not leave him, and when medications need to be picked up, or a needed item at the store that does not deliver, I had no resources. I finally hired Visiting Angels for 3 hours twice a week. Affordable, and I found my freedom to do what needed to be done for myself and my husband! Our path is not easy, but with this source of sharing , we will make it !! God Bless!! and Merry Christmas!

revclaus, I agree in a way. But when you are living it, you have to get out of it sometimes. We do not want to wallow in it every day for years. I've been with my mother 7 years now. She has been in poor shape for all that time. People have to continue living even when a loved one is dying. Each person will face their own end times. Each person will die. Caregivers are not required to die with their father, then their mother, and then for themselves. Dropping everything and engaging in the pain for years sounds like a terrible idea to me. Sorry to be so contrary, but I have been living the reality of it for a long time and would be in total depression if I did what you recommend. I'm already crazy; I don't need to add depressed onto that. Daily exercise is wonderful for caregivers.

Cindarella, I mean Google it, not good it.

Sorry to hear. Here's my professional opinion (retired family therapist, retired minister). Sounds like you're trying to distract yourself from the pain of what's past, what's happening now, and the eventual death of your mother. I'd drop some activities and join a caregiver's support group. Good it, you'll find one. (Voice of experience.) Or you could get individual therapy. Everything you're trying to distract yourself with by all your activities is painful, and at some point you'll need to confront the pain and deal with it. I guarantee your life will improve immeasurably.

I have to agree with commenter #1 .... also you don't mention your mothers height, medications she's been on that may or may not have made her bones weak, may or may not have been on or "are" causing imbalance .. etc etc. you also don't mention how many "births she's experienced (one large and main reason for the incontanence) .... for instance, my mother a mother of 4 (4 vaginal births and has extreme inconstance) .. anyway, when I walked back into her life she was checking out.. meaning no longer wanted to live.. she has extreme nausea, 100% sedate, she was on 14 medications which 13 more unnecessary she was heavily overmedicated at the time when I came back into her life. Actually several medications were causing symptoms from other medications mixing with causing imbalance causing dizziness causing water weight gain causing weight gain etc.… My mother stands 4 foot 11, when I came back into her life she was 232 pounds. It took one year, involving my pushing her to live again ... I started by firing three of her physicians and then the weaning down of several medications took place … Her weight reduced to 114 pounds which was correct for her body structure. she no longer had diabetes, she no longer had high blood pressure, etc etc. Body structure/ bone structure, medication history etc. all has everything to do with the physical being and it's ability to maintain strength and durability. Like your mother, my mother also experienced several bone breaks etc. before the changes took place, she had been prescribed prednisone for the last 10 years (which deteriorates bone density).... i was able to get her physical health turned around, then her mental health took over, she's now 76 and has short term memory loss and dementia (the signs were already beginning before her physical transformation, it's just very disappointing to have it happen, for her, and me. Your mother is 91 ... 91 alive and still living, sounds to me she's done pretty good. And as far as you saying that caregiving does not have to take over your life… The only thing I have to say to that is, and this comes from a full-time physical, financial, and other, caregiver (I am one of 4, the other three are worthless and turned their backs) for my mother… All I have to say to that is even prisoners can find a place to where they are "ok. But other than that... I have nothing to say.

My mother is 84 and is declining much more rapidly than she should be - both mentally and physically. And I resent her for it because she has done nothing to stave off the decline. She used to joke "I'm allergic to exercise" and now, she can barely get out of her chair to get herself to the bathroom - and it is a lift recliner. She refuses to do anything to improve her cognition. No hobbies, no puzzles, no reading etc. She just naps as much as possible.
So, when I am especially frustrated and short wither, she will say "you will get old one day" and I think to myself "not if I can help it". I tell her, this is why I go to the gym. So that my kids are hopefully never in this position.

I am trying to keep myself young and in shape for myself, my kids and my future grandkids.

I have. Mom has had Alz for 10 years. The last 5 have been really crushing, between her decline and dealing with the nursing home, I have put on 50 POUNDS!

Yes, my choices. Eating late because I was busy. Eating garbage because it comforted me and I was too tired to cook and didn't have time to go to the grocery store. And frankly, too consumed with grief over my mother to care about the affect this would have on me.

Now, at 43, I'm well over 200 pounds (thankfully tall, so somehow still squeezing into a size 12), my knees hurt, my hips hurt, my ankles hurt. I actually sprained my knee climbing to the flatbed of my truck because the weight on the knee was too much!

I've got to stop. I think of my precious mother, elegant, beautiful, brave, never overweight. She wouldn't want me destroying my health for her. So I'm going to give weightwatchers a(nother) try.

Balance in the caregiving role is so very important, but easier said then done. My mom has gotten worse over last 8 weeks, and diagnosed with lung disease. They want her on 10L oxygen 24\7. Her mobility is awful, and its all on me. Which i want to be the one to take care of her, but its become so much and lately i feel the effects on my own health. She didnt choose this outcome, and i keep in mind that its alot worse for her. No one wants to lose thier independence, especially my mom. Always been a total go-getter. Its a difficult time, and watching my mom wither away little by little kills a piece of me every single day.

I think we ALL try to make new resolves in a new year. I honestly didn't think we'd even have mother this long--so I get the "anticipatory grief" concept. Also, daddy died on New Year's Day--45 minutes into the "day" as it were, (12 years ago) and so I find my anxiety climbing during the holidays.
So much to do, it's all on me--hubby doesn't "do" holidays--so I am charge of the inlaws, 13 grandkids, neighbors, plus handling sub for Santas, whatever comes down the pike. I did resolve to have ALL "family Christmas" done by Nov. 30th and I did. This alone has made Dec. much more pleasant.
My resolve has been to keep on in therapy and get off antidepressants if possible. Keeping active has been really hard, 2 major back surgeries, foot surgery have seriously hampered me. And can't we always lose weight?
My mother is 87--and could live for 10 more years. She's been on her deathbed too many times to count. I feel like I am holding my breath--I don't want her to die, but she is truly now old, bent in half with age and unhappy. Her only outlet is one or two days a week at Bingo. Her last "driving friend" will lose her license soon (macular degeneration) and mother will lean more heavily on me to take her places. And I can't life or move her.
My goal is just to become healthier in mind and body, but know I am limited as to what I realistically will accomplish. Genetically, I'll live into my 90's and I don't want to! But I want to live happy and as healthy as possible and I DO NOT WANT TO BURDEN MY KIDS!
I'm going to make some new friends, I hope, find us our "retirement" house and travel a little.
I never actually make a list of resolutions--but perhaps I'll make myself a little journal with these "hopes". And be flexible, because despite our best intentions, life gets in the way of living :)

Thank you Cinderella-A great holiday post that we all needed to read. I am 59 and my mom is 81 and in the later stages of ALZ and has lived with me the past 3 1/2 years and still does live with me. You learn so many life lessons in the ALZ journey. If only we could learn those lessons earlier in life and LISTEN to them, as I'm sure everyone would agree. 2 years into my mom living with me I realized I had to take care of myself: mind, body and spirit. And I have been very successful with doing just that in 2016 and will continue in 2017. Shower time is my time to cry and reflect. I realize that I have to allow myself to feel and acknowledge those feelings such as regret, anger, frustration, what more can I do syndrome, and the list goes on. I have done more reading in the past year than I have done my entire life, and it feels awesome! I decided to continue to grow personally as well. I am in a much better place because of those actions to take care of myself. My mom is far better off because of it as well :) I grab an hour here, half hour here, etc. Every little bit of time makes a difference. Animals are such great companions and sources of compassion. They provide an abundance of unconditional love. Great idea and a rescue animal to boot, that is awesome. Keep on taking care of yourself. Have a wonderful and safe holiday.

Cinderella, you sent us an extremely well-written, positive and helpful post. I thank you. I understand how you feel as I am caretaking for my husband who is completely disabled. I do everything for him except feed him. He is awake for about 3 hours during the daytime. He micromanages my life, and for all intents, I have ceased to exist. After seeing five neurologists, no diagnoses was ever given and the only prognosis was "face the fact that he will have to go into skilled care," which is NOT ok with him.

When my new health insurance kicks in in January, I plan to get help by seeing a behavioral counselor. Thank you for the much needed kick in the behind! ❤