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Cinderella5001 Asked December 2016

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

I have been the primary caregiver to both my mother and father. But, it was my mother's array of ilnesses that caught my attention. She has arthritis, high blood pressure, type 2 diabetes, incontinence, démentia, osteoporosis, heart disease, poor balance, and now is not ambulatory because of a broken hip, a broken fémur and a sub-capital fracture of the femur. She has been in nursing home care for 3 years. In my mind, I believe that most of this did not need to happen. My mother was a person who never made any effort to exercise. She was mostly sedentary. She was a homemaker and also worked outside the home when my brother and I were teenagers. She was an excellent cook and had a gréât appetite. She was not able to control her weight and eventually reached over 220 pounds. I believe in my heart that some lifestyle changes during her adulthood could have prevented some of her illnesses. Witnessing what happened to her has been both a heartbreak and an éducation for me. To cope with the grief and sadness of dealing with her illnesses, multiple hospitalizations, pain, discomfort, and loss of independence, I decided to make changes in my own life. One of the best décisions I made was to join a community group fitness program. I typically exercice for 45 minutes a day in a class with other seniors under the supervision of a group fitness instructor who is aware of the limitations and the goals of people like me who want to maintain our health. Even though my mother's nursing home is an hour away from where I live, I continue to visit her at least 3 times per week. I continue to wash and iron her clothing. I take care of her financial and médical correspondance. I volunteer once or twice a month as a docent at a muséum and I continue my éducation and life-long learning by taking one graduate class per semester at a local university. I am trying hard to fight dépression, grief, and sadness by keeping myself busy and by keeping my mind occupied with positive thoughts. My mother is 91 and is continuing to décline. I do my best to advocate for her and to see that she receives proper care. I truly believe that I am doing all that I can for her, but also believe that I have to fight to maintain my own life. On a daily basis thèse choices are not always easy. I am 68 years old and I just adopted a "rescue dog". He keeps me busy too! And in moments when I'm feeling very sad, he seems to find a way to entertain me. There are some days that I think he helps me more than I help him. I'm writing all of this to tell everyone that caregiving does not need to completely take over your life. I urge everyone to try to find balance. Although you may feel like you are being selfish, you must also take care of the caregiver. Please find your way to do that - as I have done for myself. It will help you to take care of yourself and it will help you deal with the ressentment that we sometimes feel when the demands put on us are unrelenting and there seems to be no relief in sight. I have made my peace with this. I know that my mother will not recover from her illnesses. But I also know that I have been kind to her, and dévoted, and that she is reasonably comfortable and happy despite this difficult situation. I have learned a lot about caring for the elderly. Maybe this is my mother's last lesson to me. I was raised to know to do the right thing, whether you feel like it or not. I feel like I am doing that. At the same time I know that I have to live my life as well. I hope that all of you will find your ways to take care of your parents but also take care of yourselves too. Of course, every situation is different but you can find your way.

pamstegma Dec 2016
Well, if she made 91, she exceeded her life expectancy by at least 10 years. So she must have lived a somewhat healthy lifestyle or really good genes. Celebrate that. A nursing home is better than a homeless shelter; far more women get to a nursing home than men do. Celebrate that. Give yourself credit for all you have done! Next time you sign in at the nursing home, notice how many others have had visitors. Maybe ten percent. Yep, you are in the top ten percent of caring children. Good show!

Cinderella5001 Dec 2016
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.

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Scaredtaker Dec 2016
What a beautiful gift of experience to share with others. Have you considered writing a memoir surrounding this as a beacon of hope and strength for others finding themselves in this position?

Anticipatory grief is very real. We have this front row seat as to our own mortality as we watch our elders go before us. It can unsettle the balance for sure. But you have turned this bittersweet occasion into a positive experience and from it, clearly found strength and hope through concerted efforts to change your perspective - and not get bogged down into the pit of despair that is easy to do in this situation.

Thank you

womenofGod Dec 2016
Good morning all I have missed being on site. This is my story Cinderella except my mom is 74. I am 52. I have decided to put the oxygen mask on myself first this year coming in 2017. At times I have felt hopeless but now I am working with a life coach and am gaining momentum. I love my mom but she has chosen to be confined to her recliner chair and years of immobility having taken there toll. She has many health issues. Her choices have cost her dearly. She has motivated me to care for myself. I am grateful for this site to express our experiences. As we selflessly care for another let's selfish ly care for ourselves or we will be of no good to anyone. Love to all.

Patticake2 Dec 2016
Cinderella5001 Thank you so very much for your post. I am feeling so much anticipatory grief as Scaretaker said that I worry it is ruining what time I have with my mom. I am angry at her and I don't want to be. Mom is 89 and 83 pounds. Her dementia is stealing the mother I had. Some days I want it to be over and some days I make plans for her care so she will ... I don't know how to finish that sentence. What do I want? Her to be healthier? Live longer? Appreciate me? Stop being so passive aggressive? Stop thinking my worthless do nothing, money sucking brother is wonderful?
So since I have no answers ... I exercise. I long distance speed walk, take Buda Khi (martial art type cardio), Kettle Bells (weight training), and Zumba. I work out on my own weight station at home. I only mention this is to show I must have time to myself and for myself. On weeks I miss class I feel resentful and crabby. My husband would like me to talk to a counselor but finding this site I get insight to what others are going through and how very fortunate I am with my mom's health issues. Other than an occasional accident my mom takes care of her diarrhea. I do her cleaning and spa days. My husband is her cook. My mom has celiac.
My daughter comes 1 or 2 days a week to play scrabble or other activities to help her mentally active. Mom does virtually nothing but sit and watch birds. She tries to crochet but her arthritis is bad. She talks on the phone almost every night to my brother for 1 to 8 minutes. He is a jerk. That is the extent of his care. He won't even come see her. Just enough contact so he can get money. She gives him an allowance still and he is 58. I have stopped the majority of his mooching except for this last problem.
Somehow I thought this time taking care of mom would be different. I knew it would be me since my sister died early from not taking care of herself and my brother being who he is.
I just thought she would be more part of the family unit instead if sitting in her chair and talking on the phone. I thought I would be this loving, patient daughter who would not ony honor her mother, but be proud of all I do for her. Instead I am a crab and don't want to do this anymore. I will take care of my mom ... I'm just scared of the future. Thank you for this opportunity to vent. If anyone would like to give me a kick I'd appreciate it. (Smile)

Christine73 Dec 2016
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.

ICARE59 Dec 2016
Cinderella you are awesome! My husband has diabetes n ALS for 3 years. I have my 4 yr old granddaughter whenever I can because she brings much joy into our lives. She's a sweet handful but keeps me out of my deep depression when she's here. I'm also taking pictures n video clips of her n pawpaw ( my husband). He's declining at a steady pace as ALS always does. And I make my husband creative handmade cards which he surrounds them around his sitting area. This cheers him up n that makes me happy. I pretty much stay at home as we don't have a caretaker yet. Since I don't have help, I stay busy cleaning n cooking healthy meals. And I try to go outside everyday for a few minutes for a quiet moment. To stop n think n cry as I dont do this in front of my husband. My husband is 54 and I'm 58. Been married 26 yrs. and I'm thankful for everyday I have with him.

mom2mom Dec 2016
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.

Newyorker Dec 2016
I hear you loud and clear. But try to keep in mind that we all are human. We all fail in many ways. There really is no way to guarantee that we will be healthy to the end. From the moment we are born we have an expiration date. Try to remember happier times. In being forgiving of your mothers weaknesses, you just might find acceptance of yourself. Try not to buy totally into the"you are in control of your own destiny" philosophy that is popular. It is only partly true. Do what you can to stay healthy while realizing that it just might not be enough. And try to realize that your mom did not choose to be elderly and a burden for you. This Christmas, please accept the joy and peace of the coming of the Christ child. He is the missing link we all search for.

Midkid58 Dec 2016
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 :)

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