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For over 6 years now I’ve cared for my 94 yr. old mother with dementia for six months out of the year. My sister has her the other six. I’m a widow, so being alone, I can’t even go to the bathroom without hurrying for fear she will fall. Even though she is legally blind and has hearing loss, she can still shower, dress herself, watch tv, carry on short conversations and get around the house. She is a fall risk and needs the constant supervision and attention similar to what a four year old would need. My home smells and looks like a nursing home a lot of the time. We have daily battles about small things that come up, like throwing her garbage on the floor, sticking her chewed gum all over the place or losing her teeth in her pockets somewhere or throwing them away wrapped in her napkin. She’s angry with me a lot of the time. Seems nothing I can do makes her any happier.


When she is watching her show with her “tv ears” on, sometimes she will cry and talk to my dad saying she wants to be with him. She will cry about all her limitations and the loss of her independence. I think when she has her tv ears on she feels like no one is around to hear her. It’s a regular thing that happens.


I feel bad. I don’t go over to hug her. I do cry a little when she’s going through that, but I don’t feel close to her anymore. I try hard to be soft and caring with her, but eventually it just turns into stress and frustration. Our relationship is just “do my job, take care of her/ battle with her”. I realize a lot of it is my attitude and perception but it’s difficult to shake.


I feel terrible that I don’t feel the urge to hug her and


I feel like I have a cold heart. Actually, most of the time


I just feel numb of everything around me.


I’m I the only cold hearted one out there?

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Surviving the struggle you now have requires the 'detachment' that you are experiencing. It's what longtime medical professionals experience.(It doesn't mean you don't care). Sometimes we endure difficulties better that way, it's not abnormal. But since it worries you, you need to make a change to better your own life. Time to choose a facility for your mom. God bless.
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No you are not. My mother is in AL. I know I don't have it so bad. I have anxiety attacks often. I am responsible for all my mothers other needs. She is going downhill gradually. Often I wonder how the end will be. I fear a prolonged period yet in a way that has started. I just wonder how much worse it will be. It seems more rare these days that one passes in their sleep. I know I said in a recent post that I dislike the present and fear the future. At times she seems off which is depressing. It can be difficult to feel warmth. I then feel guilt although I know that is a wasted emotion. I can also feel numb and stressed. The cycle of this invades my mind. I try to do all I can. My husband and oldest child thinks this site is not good for me mentally but I beg to differ. I have learned so much from visiting here
It also is a strong group that provides a support for me. I can feel awful when I hear I some stories. I wonder how that poster can possibly survive what their situation is. I imagine my life without having to meet all my mother's needs which I haven't expressed in detail here. That makes me feel bad. Yet I don't love or even like the present. It all cycles around and my brain gets foggy. Hope I answered you.
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anonymous828521 Nov 2018
Awesome answer Riverdale.
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I have to admit I am "all business" when dealing with my father. I have no warm and fuzzy feeling towards him. And while I do feel something for his situation, I don't feel sorry for him. My father has a long history of disappointing me and always putting my feelings last. Everyone else on the planet seemed to be more important to him than I ever was. After awhile you do grow cold to it. Now he needs me. Now I am important to him. 50 years too late. I do what I have to do to make sure he is safe and taken care of but I don't jump to try and fulfill his every wish. I know how that will end. I am sure I look cold to others but it is really self preservation on my part. I am not going to open myself up to being hurt.
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Davina Nov 2018
Don't blame you; my dad was the same way. When he finally died I felt only amazement that such a mean person could live soooo long.
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Yes, I felt this way. I'll go even farther and tell you that I posted on the forum that I was beginning to wonder if the mother I thought I knew before was just a false persona and this person I was now caring for was her true self. By then I truly hated everything about her - her disability, her neediness were a ball and chain. When I began to avoid being near her and when I exploded in anger and frustration earlier each day I took stock of what I was doing and realized that it was not fair for my mom to be around this angry person and that I didn't want this horrible vision of my mother to be all that remained of her when she was gone. Realizing I had burned out I sent her to a nursing home for a crisis respite stay and she never returned home. I'm happy to say I was able to let go of the bitterness in the year and a half she was no longer in my care.
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mally1 Nov 2018
Wow! To hear you say this is amazing to me! I don't even live with my mom, but her sheer neediness drives me nuts.... She called me 8 times today, mostly trying to get me to come over tomorrow evening for a small get together she is planning. Fine, but not only do I not have wheels tomorrow, since my husband is taking my van - because of a 3 day snowstorm coming in, but I don't travel in ice/snow. She knows that, but doesn't care; kept calling back to ask if someone could bring me, if her housekeeper (in a pickup truck, not a good driver) could come get me, etc. When she calls for me to shop for her, it's always stuff at different stores, so I have to go to 3 or 4 to get just what she wants. So now I'm a bit sharp with her and she's taken to telling me to settle down, while she's trying to get me to do something she wants. Yccch! Hubby and I are doing our very best to help keep her out of a NH (God is doing way more!), but the thought of her well cared for in a nice faith based NH we know of an hour away is tempting.... Thanks for sharing cwillie; I appreciate it!
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I am the main caretaker for my husband who has Parkinson's and dementia. I also feel guilty and shame for no longer feeling like we share a "husband/wife" relationship, but now it is "child/parent" or "patient/caregiver" roles. No wife expects to have to change their spouse's diapers, but here we are. Our relationship dynamic has drastically changed over the last few years and will continue to decline. My hubby can no longer participate in the financial or household decisions, daily conversations about my day, future plans, etc. Just like you and your mom, your role as a daughter is no longer valid. Your role is now a caretaker, and filled with stress and day to day "dirty business" of just getting through the day without a fall, mess to clean up, or trip to emergency. This is normal. Seek a caregiver support group, go to a counselor who specializes in caregiver support, and take a break for your mental health once in a while. The saddest truth is we don't know when our loved one's misery will end, nor our role as caregiver. We just take one day at a time. Hugs.
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Thank you all. Just hearing that others have felt this way has helped. My mom is a good person and she wasn’t a bad mom, but she was never the warm cuddly one, even when we were sick. My father was the one who cuddled us when we were sick and read us stories at night. We always knew we were the most important thing in his life. Sometimes I think I might not feel this way if I were taking care of him. But, that just makes my guilt worse so I don’t think about that much. Tiger55, thanks for your insight and
remarks. I think you are right. I think we do need to “detach” to some extent or the emotions would be overwhelming.
We (my sister and I)have been talking about assisted living. I know my mom feels my negative emotions even when I try to hid them. I don’t want her to feel abandoned but, I think assisted living staff would be more patient and tender with her. These decisions are so hard, but thank you all again.
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debbiec123 Dec 2018
so glad to hear that you are considering this, aannie. I find that since mom is settled in, our interactions are based on fun things now(bringing her favorite foods, looking at old pictures that we saved when we cleaned out and sold her old house, taking her for lunch, etc) and we know it's finite, and we can go home. so much better!
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My mom and I never had a warm a cuddly relationship. As she grew older and more frail, I needed to detach even from our distant relationship in order to be able to see what her needs were. All of the "oh, she's as sharp as a tack" stuff from relatives who loved her were good for her, but didn't get her the assessments and care that she needed.
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anonymous828521 Nov 2018
So true.
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Definitely not - and my Mother and I were extremely close.  I reached a place that I thought there must be something terribly wrong with me.  Then one morning I woke to find her on the floor in such a state that I had to call an ambulance.  While she was gone (in the hospital for a week), I went through a whole gamut of emotions - shame, regret, tears and questioning why I had grown so cold.  I am learning to forgive myself.  What we are experiencing is the normal result of years of unrelenting stress, demands and the emotional pain of watching someone we love slowly dying before our eyes.  I watched a family video the other day and it was surreal.  I couldn't even remember the woman in the video; full of life, witty and so physically different than now.  I don't have any answers - maybe a NH would make the difference for you.  God bless you.  You are a loving, giving person.  If you weren't you wouldn't have these concerns.  I pray for all of us experiencing this dreadful, emotional journey.  Hold on - don't let it get you down - you're not alone and you are loved. 💙
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Rosses003 Dec 2018
“If you weren't you wouldn't have these concerns“...So on point! Great answer!
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"Not alone" helps a great deal, doesn't it?
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Penelope123 Dec 2018
I can't tell you how many times I've said Aging care has helped me cope with caregiving. Just to know that my feelings of sadness, exhaustion and feeling inadequate is also felt by so many others and I'm not a bad person. God bless all caregivers!
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oh My God no. You are not the only one. I feel the same way. She lives with me. I remember her as a beautiful, intelligent, fun person. What she is now is just plain sad. This is a terrible disease that takes so long to end.
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You are in a relationship that consumes most if not all of your time, energy, and emotional wherewithal. Your mother in her condition is unable to provide any of the mutually satisfying returns you would get from another type of relationship such as a close friendship or a romantic partnership. Expecting that kind of mutual relationship would be unrealistic. So is expecting yourself to respond emotionally as you would in a more satisfying, mutually supportive relationship is also unrealistic. You have had to shift gears with your mother into a more businesslike role, which is actually healthier for both of you in this kind of situation. So it's perfectly OK and just the way things are at the moment.

The hard part is figuring out how to build into your life relationships and activities that ARE satisfying and nourishing to you, despite the enormous drain on your resources your mother presents. Its easy to become isolated in a caregiving role where one unsatisfying, overtaxing relationship becomes your total reality. Can you get at least an afternoon of respite care for her once a week to do something totally for yourself? Visit a friend, browse a shop, sit in a coffee shop and read a good book, go for a drive, anything that is not totally about your mother? It might change your perspective a bit and help you feel OK about treating your mother like a job, which is essentially what she is at this point.
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anonymous828521 Dec 2018
Bravo Farmerswife☺
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I’m told it takes people 3-6 months to adjust to living in a nursing home. You say she comes to you for 6 months then to your sisters. She is always being moved homes and can’t settle down. You have no respite set up for yourself while she’s with you because you don’t have her all the time. It would best if she were placed in a home where both sister and you can visit and she can have structure and permanency and things to do and outings set up by staff. The staff get to go home so they can come back refreshed and ready to do their work and you can drop by for a visit.
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my mom is 93 and with me sunday-friday, more if my sister has something to do on the weekend; i feel the same way you do and as the oldest (of 7) i feel terrible about the way i feel; friends who have gone through this tell me to go into the bathroom, cry, and come on out feeling it will be better. i understand and accept this as not expected, not planned for, but she knows that i love her, i know that i love her and i will just try to do better because time is short..prayers and love heading atcha!
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Withdrawing is the only way your mind can find to switch off the stress before it blows up.

The problem is it is extremely difficult to switch off one set of emotions and not the other, nice, cuddly ones.

I take my hat off daily to CW who recognised in good time what was happening and found a good solution.

I don't think I did spot it in time. Not to mention, I don't think I'd thought the whole scenario through in advance. In retrospect I can see how ugly things became, but at the time I ploughed on regardless.

What happened then (apart from the damage to other relationships) was that I went through anger, dislike, blame, guilt, disapproval and all points between, until medical and surgical events intervened and turned my caregiving job from an emotional support-based project to a clinical needs-based project. Then, with things that really needed doing to focus on, and much greater understanding of what was happening to my mother and why she behaved in some of the ways that were most infuriating, a lot of the frustration fell away and gradually the love and compassion returned.

Not to mention finding AgingCare. It is hard to explain how immense a relief it is to discover from other people who really know what they are talking about that you are not alone, not evil and not losing your mind.

I'm still not sure how much longer I could have continued. Even once I'd weathered the worst of it emotionally there were still the physical and mental exhaustion.

Anyway. The point is, that you are *not* cold-hearted, you are coping with an unbelievably stressful situation. Possible solutions include:

regular respite breaks, of some hours weekly and one or two weeks every three months or so;

delegation to paid services, whether that's care services as such or ancillary services such as house cleaning, laundry, grocery delivery;

activities to share with your mother, such as singing groups, reading groups - anything you can both enjoy in company;

local caregivers' groups.

Have a look at what's on offer around you. Your Area Agency on Aging and your local library are good sources of information.

Most of all, be fair to yourself. You are not cold-hearted, you have not stopped loving your mother. You are a person coping with an overwhelming workload, of which she is the primary cause - not to be blamed in any way, but that's the fact.
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anonymous828521 Dec 2018
Beautifully said, thanx Countrymouse☺.
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You sound burned out, not uncaring. You have needs as well that sound like they're getting neglected. I would see how you feel when those are taken care
of.

That said, caring for a not-all-there elder is not easy. Like other's said, there's
no reciprocation (may never have been any before). They are going to deteriorate,
not get better. And their demands can seem almost continuous.

At a facility, there is a small hoard of people caring for one senior. There are
activities, library, etc and other distractions. You are it, and it's overwhelming.
Look for ways you can have other help in home. And be careful to take very
good care of yourself. Being around demands for constant care, negativity
and deterioration of your parent is incredibly draining. Be careful to put your
needs first when it comes to nutrition, sleep, exercise and socializing. If you
can't do this at home, then a facility would make more sense. Best of luck.
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Actually, believe it or not, the cold shoulder is a self protection mechanism built into our brains. We must distance ourselves from the cause of our pain. It is a survival instinct and it is perfectly normal.
How you feel inside is one thing. How you act towards her is a thing that you do have control over. It is called being mindful. Or fake it till you make it. That is also, survival of the species behavior. The fakery and unconditionally kind, patronizing vocal tones, fake smiles, etc. are all the glue that hold us all together in hard times when we really want to tell a person off, or dump on them. But, We do have the power to fake a smile, lend an arm, hug a person even when we want to run away. Or yell at them.
No, you are not a cruel or cold person. You are normal, and trying to survive the nightmare that is your reality with mom.
When parent sare caregivers of adorable kids, who grow up to be their own people, it is a hard task but there is an ending , hopefully a good one. But the end of life care is a nightmare with no waking up until death. No wonder we close down, and shut down inside. It is just so hard to bear.
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anonymous828521 Dec 2018
Jennyfrix: well said! Thanks for that great share☺.
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Tiger. That response to me made another frustrating day a little more bearable. Thanks
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anonymous828521 Dec 2018
☺✌
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I feel the same way. My mom has always had 'good mom' and 'bad mom.' She could be very tender, but then could also turn and be hateful. It takes so much energy to just do the things that you have to do that there is very little left. I try to be kind, but I get tired and then I don't have as much patience. I just want to get through the things that have to be done. Dementia also makes people who were always a bit self centered, even more so. It makes them have no empathy and not even want to hear about things that happened to you, so I think it's normal to feel like pulling back a bit. Yes, those caregiving articles that tell you to relax some and just enjoy your time together are very heartwarming, but they must only apply to people who have plenty of help coming in to relieve them!
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I know how you feel. Both of my parents have AD. I cared for them for six months on my own, in their home. It was hell.
Their doctors told me they needed to be in an adult family home. I found a good one about two miles from me. Medicaid pays for Mom being there, and my Dad has enough income to private pay for staying there. They are together, and happy.
Get your Mom's doctor to write a "prescription" and recommendation for her to be in an Adult Family Home. It's much better than a NH.
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All your responses have lightened my heart. I am 64 years old, living with my 88 year old mother, who, up till about 5 years ago, was healthy and so full of energy. My Dad passed away 14 years ago. Mom’s physical health has deteriorated over these last 5 years. Her mind is still fairly sharp. She has numerous ailments and conditions, can barely walk, has been hospitalized at least twice a year for the past few years, and is failing every day. My brothers live out of town and I am the sole caregiver 24/7. I work full time, so she is alone all day. I feel like a lot of you, I can’t hug her. I’ve read so much about anticipatory grief and all the other explanations of why I feel the way I do, but I still feel guilty that our relationship has deteriorated, along with her help. I do everything. I have two sons who live out of state - I can’t visit them because she shouldn’t be alone overnight and it’s too hard to get someone to come stay for a length of time. I’m just so frustrated, angry, resentful- you name it! I can’t wait to get out of the house for any reason and I fly out the door on Monday mornings! I wish I didn’t feel this way. She blames me that “I took her car away”, but she can barely walk, let alone drive. She is so up and down - the other day I came home at lunchtime and she was asleep on the couch - I had to check if she was breathing- and she was still sleeping when I left. When I came home after work, she has rearranged the furniture in our family room! And when anyone comes to the house, she’s an entirely different person than what I get to see day and night! Thank you SOOO much for letting me vent! I feel better just doing that!
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Addie11 Jan 2019
I hear you. As the only daughter, I am the one my mother lives with. I am so fortunate that she can take care of her personal needs of dressing, toileting, making a snack.
It is hard to explain to others how she is passive/aggressive, wants to argue and bicker about everything. She tried to play my brothers and I
against each other. A hug? Never. An occasional “thank you” or acknowledgement of something positive? Nope.
I feel so bad that the mother I cared about, shopped with, visited is gone and this person who is here had no interests other than tv 24 hours a day. But, she can’t follow the plot or characters.
I guess I want my mom/friend and it is hard to accept that she no longer extents.
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Just remember that some day you will be old and probably just like your mother. Treat her as you would want your children to treat you.
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Riverdale Dec 2018
I think about this but what is so much harder for me is that my mother has neglected her health for so many years. By the time she was my age now she was in bad shape. And of course it all gets worse. It stirs up so many emotions. As an only child I am the one to bear this the most. Some of what I feel is that I was not worth enough to her to take better care of herself. I try to detach but I can't completely. It greatly affects my emotional well being. But I still care about my health. It all just seems hopeless.
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Aannie - although my
mother does not have AD, I know exactly how you feel. And you aren’t the only one feeling this way - it’s so very hard watching them fail a little every day.
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You aren't cold hearted. You're human. My dad has kicked, scratched, punched, stomped on, and slapped me. Sometimes he has done this even before getting out of bed. I swallow my pride and take it. I know he's gone and all that is left is his body. His heart pumps blood through his veins, but mentally he's gone.

I will admit I have yelled back and I block his blows. I feel disgust because the only other person dealing with him is my mom. My siblings are ghosts. His sisters, and cousins are part of his fragmented memories. He cries allot because there are brief times he realizes what is happening. He wishes he could go back to his country. He wants his mother and then he wishes he were dead. He screams how he wants us to kill him. These screaming sessions last about 45 minutes. After he gets tired, he just calms down. I give him a hug and sing his favorite song. Sometimes he welcomes it and hugs back and there are times he brushes off my hugs, but I do it anyway. I try to remember the number of times he would carry me from the back of our 1979 Yellow Honda Hatchback to the house after a long drive from New Jersey to Delaware. He did his best not wake me or my siblings, but he always did it. So I give a hug to remind me
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No you are not I have been taking care of my fiancé for over 3 years and the last 6 months have been the worst I have to do everything for him I am a 24/7 caregiver he is very alert nothing wrong with his brain so is always telling me what and how to do something he doesn’t listen to me when I know what’s best I miss and love the person he was and feel like he is no longer here I feel guilty and sad he is 76 I am 71 we have been together over 20 years
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Hi Aannie, no you aren't cold hearted at all. you're exhausted, and normal. the best thing that happened in our family was when my mother fell down her stairs and fractured 6 ribs. Sounds cold, but it forced her out of her home and into assisted living. She has been there since may of 2017. it took over a year for her to make the adjustment. She still has good and bad days, but at least now I can get some time for myself, and know that there are good people there for her. Think about this for your situation.
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Riverdale Dec 2018
My mother also fell just over 5 years ago and after being hospitalized entered AL. Her living situation was not good and took over 6 months to clear it out. She has accepted this. But my other posts indicate my other concerns and stresses. Hope you feel better than I do at times.
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I am so glad you asked this! I feel that way too about my mom even though she lives in another country and only visits me. But I have to fly back and forth with her since she cannot travel alone and I 'm responsible for her 24/7 care here. She also can carry only short conversations and mostly repeats herself all day and just stares at my face and keeps asking about the next meal.....
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Dear aannie, When I read your post I wanted to cry because I, too, feel like a terrible daughter. I am taking care of my parents (both in their 90s) in my home. I stepped into this role very idealistically, but soon enough I realized that I was in way over my head. The sad part is that our relationship changed as their health deteriorated.

First my father was the difficult one because he would become belligerent, but he is in hospice care and sleeps most of the time. My mother is the difficult one now because she is always criticizing or complaining about something I did or didn't do or about the caregivers. Each day there is some new issue I have to deal with concerning my mother's behavior. She is also very hard of hearing that makes having a simple conversation next to impossible. I don't hug her or kiss her. I am very business-like in my dealings with her. This reaction surprises me because I thought I was a caring person.

I find it hard to see them every day get frailer and needier. I ask myself, why do I pull back? Maybe it is because I am forced to face my own future--a slow, agonizing, undignified end. Because I realized that I alone was inadequate to meet their needs, I sought the assistance of caregivers who come in seven days a week. I know my parents are safe, clean, and warm, and have a wonderful team who take care of their medical needs.

Deep down I know I love my parents, but I don't like to be around them. I ask God to give me strength to deal with this situation because it is not what I had envisioned when I started out on this journey.
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Bokcare Dec 2018
So very true - I am always asking for strength from God.
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Annie it is virtually impossible to Care for some one with out love in your Heart while you try to Care for your Mother.
I would advise You to get out now because you are feeling so miserable and as a result of this you make your Mom miserable too. Think back to when you were a Child and how your Mom adored You ? now is your chance to give your Mom back some of that love.
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Riverdale Dec 2018
What if you never felt that adoration. I felt somewhat neglected as a child. I always wanted a different living situation. I envied those of some friends. This makes it all so much more difficult since my sadness has been stretched over a long time period. But hopefully for others they had some happy periods earlier on.
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Please understand that we can’t force emotions. My therapist told me my role is to make sure my mom was safe, fed, etc. of course smy mom was living in our home and it was so much harder than I ever imagined. I forgot how my mom has always been and for some reason thought she’d be finally different. So her 24/7 presence caused me depression, anxiety and stress. I am still 14 pounds more than I was before she moved in. Finally for me I moved my mom to AL. I’m still responsible for everything and I don’t hug or kiss my mom. Too much has expired. Be nice to yourself. You’re amazing for taking care of a parent.
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My opinion- not necessarily fact but it has been confirmed by others I talk to- There is a difference between being a daughter and being a caregiver. I prefer being the daughter. I feel very much the way you
describe when I am the 24/7 caregiver. I suspect there are some people who have the relationship that can bridge that gap and some of us that
relationship just does not function well. I wish I could tell you a simple
answer, but I sit here crying for you because my heart goes out to you.
I have concluded that some people, at that point in their life, have a very
small world and they are not seeing the whole picture. If we can look
through their eyes, and feel the limitations they are in and the challenges
they are facing, it can put a new perspective on things. One thing I
discovered is that feelings are not a sin. God gave them to us for a
good purpose. It is what we do with our feelings that will get us in
trouble. We can let our feelings dictate what we will do, letting feelings
be our god, or we can recognize our feelings, and ask God to open
our eyes and heart to their needs and their lack. Then focus on the
positive things we can do to help. If we focus on ourself, no matter what
situation we are in, we will not be happy. If we focus on the
"whatsoever"s , we can be happy in the middle of the storm.
"Whatsoever things are true...honest...just...pure...lovely....good report"
Phil 4:8
I am glad you asked because I needed reminded of that.
I will pray for you.
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Bokcare Dec 2018
Thank you! I liked being a daughter much more than a caregiver too!
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