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Is it sadness, guilt from resentment,or wishing we had done a better job?
My mom's needs are growing almost daily and as an only child I feel overwhelmed. Assisted living is not the answer, she's needy and helpless in many ways, thanks to my dad who pampered her. At 88 she's not going to get any better. I don't want to lose her but I'm legitimately tired of caring for her )almost 12 years now), many of those when she could have and should have cared for herself. That is not the case anymore and it appears she facing a slow decline. Like many of us, our relationship was not great but that's irrelevant at this point. I'm resentful about her neediness, often at my expense and worry that I'm going to feel lots of guilt when she's gone. I doing the best I can but never feel it's good enough. She doesn't want friends and doesn't get along with her family so I'm her everything. It's limited what I can do with my life, even our home. My husband wants to retire and sell our home/business but uprooting her from her MIL will likely cause confusion and further deterioration. And to make it worse, I was raised to be a dotting daughter along with my father. I just want to feel good when all is said and done but I'm not sure I will because I'm always at my wit's end :-/

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Regarding the value of counseling - I had a difficult relationship with my mother for most of my adult life, starting in my mid-teens. It was clear that I was not (and had no wish to be) the daughter she wanted. On my part, I was always insulted that she didn't seem to respect or appreciate the person I WAS. I spent hundreds of hours and probably $1000+ on counseling. I saw good therapists and bad, and mediocre. For several years I was so angry that I refused to speak with her or my father or have anything to do with them.

But as they got older I felt that I should make one more effort to try to have a positive relationship with her, frankly from a selfish perspective of not wanting to feel badly if she died and our issues were unresolved.

The Force was with me (yes, I've been watching the old Star Wars films lately) - and led me to a practitioner of Emotional Freedom Technique - aka the Tapping Method. You can google either term and find both articles and youtube videos on it. Well - after TWO sessions (of a total of less than 4 hours) I was able to visit my parents and enjoy their company. AMAZING. I could tell when Mom tried to push my buttons - but you know what - those buttons had been disconnected! They just didn't work anymore. (LOL!)

I share this story because I urge anyone who's suffering from toxic parental/familial relationships or any sort of PTSD to try EFT. It was just miraculous. BTW - I initially went for EFT to cure recurrent migraines. After ONE session I didn't have another headache for 3 years. All true!
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I was caregiver to my terrific husband who had a long and terribly painful cancer battle. I loved him so very much and was honored to care for him and love him through it all (6 years). When he died ........I did too. I will never be the same and I miss him in every corner. I know grief :(

Now (five years later) his mom and my mom live with me - both 90 - both dementia. If I outlive them, it will be a welcome relief. Sorry to say that I won't grieve. I won't miss them in every corner.
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I hear you slynn. Many caregivers express the same sentiments. I don't know how I'll feel either but right now, I'm feeling all the emotions you are. I hope when all is said and done that I don't get "stuck" and lose more of my own life that I already have. I think I'll want to do nothing for a very long time. No obligations, no appointments, no schedules, nothing. Other than that, I think it's a difficult thought to imagine while in the middle of caregiving.
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I've been taking care of my mom for over eight years...the last four have been 24/7 with little help. She's 93, has Parkinson's, was admitted to Hospice this past June but is still at home, and is dying inch by inch. People ask me what I'll do when she's 'gone'....I imagine that I will completely melt into a mass of goo and stay that way for a while. All the years of stress, frustration, anger, and caregiving will catch up with me and I have no intention of denying myself this time to finally feel all the emotions that have been kept at bay because 'letting go' simply is not an option while she still lives and there's so much that needs to be done. After that? Who knows...I guess I'll have to find some kind of life to live where I actually only have myself to worry about. Hmmm...what an odd idea!
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There is a mix of feelings for most of it - relief that the job is done, some pride in that we may have done difficult things to the best of our ability and (initially limited to none!) knowledge, albeit imperfectly, and yes, of course, the guilt and the second guessing about the imperfectly part. There is the grief of missing the person that was, if there was anything at all about them you missed, and of knowing that what could have been/should have been/if only is now a permanent reality. There is the peace of knowing you provided some comfort or at least did your duty and tried to in a difficult time, and the angst of your own mortality being more on your mind than ever. With luck, maybe there is a sweet memory of a good little time or moment to cheer you, and whenever you can dwell on it instead of the really awful moments, can help quite a bit.

It is a lot to recover from. It changes you for ever and the changes are not all bad. This place is as good as any for online grief therapy and debriefing (believe me you need that - how past generations coped without ever talking about it, I'll never understand! - well, no wonder they went deep into denial for the most part...). But a really good face-to-face counselor or group can be invaluable - and if one does not meet your needs, find another.

Read this too - it really is sweet and reassuring.
hellogiggles/for-anyone-who-has-lost-a-parent-or-will-lose-a-parent/
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Gershun though I haven't been primary caregiver for my mom my whole life she was sort of the same. She was my dad's project and mine as well and when he passed 12 years ago she became totally mine. Our situations are similar. If I have an hour to myself, I think "what am I forgetting, what should I be doing". She has become my life and I know that when she's gone I will suffer from the same lost and changed feeling. I don't know how long or if I will ever get over it. It's not that we were close, we weren't but over the years we have been completely in each other's life and she has soften with time. I also agree that counseling doesn't really help. The only thing I keep saying to myself is something I learned from yoga "when there's nothing to do, do nothing". When they day comes that we lose them, there's is literally nothing we can do. I'm hoping this will help me not to wallow indefinitely. The whole thing is so hard. Thanks for your post. oxox
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LBrook I relate to your post. My Mom passed in May of this year. I've been taking care of her or looking out for her in some capacity ever since I can remember. She was widowed at a very young age and for some reason (don't ask me why) I felt that it was my responsibility always to make her happy. From the age of four on.

I was telling my sister a couple of weeks ago, it was like she was my job. She was not a difficult person at all. Quite the opposite but I think after so many years of me being her little watchdog and then later on in life, her care giver I find myself absolutely lost. There was always this little niggling voice in my head saying, you must call Mom, you must visit Mom, you must do this, do that, on and on and on for the last 50 yrs. Now its like there is this blank silence in my head. PTSD, call it what you want. Its there though. Grief counselling..............I personally don't think it will help me. When it was getting close to the point where my Mom was too much for me to care for and I was considering Nursing Care for her I went to cognitive therapy for anxiety thinking I'd get a jump on things. Didn't help in the least. Was given a lot of printouts and told to not take pills, write a journal, blah, blah, blah.
Didn't help.

I think the answer is different for everyone. Grief counselling may help. For me I am still searching.
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My dad passed away almost a month ago and my mother about a year before that. I cared for them both in my home for 3 years following their respective diagnosis of late stage cancer. For years, it was his chemo or her chemo, in addition to the myriad of doctor and therapy appointments that they each had to attend. I am single and I have a professional, yet demanding, job as well. Now that they are both gone, I am technically no longer a "caregiver" (although as executor of their estate, I am still very actively involved in the "business end" of death, which is certainly no picnic!). When mom passed, I had to provide intensive care for my dad and it was only then that I realized how much she did for him, even despite her own illness. They were married 56 years--I guess that is what happens when you are together for a long time. Anyway, now that he has passed and they are both gone, I am feeling the unbelievable weight of their collective passing. It seems like I just lost them both!

I no longer have the weight of their worries and it seems like I should feel better, but I don't. I am very emotional most days, am having trouble sleeping through the night, finding it impossible to focus, and the smallest thing seems to set me off, quite unlike me normally. I recently read an article that compares the end of caregiving to someone with Post Traumatic Stress Disorder (PTSD). That actually seems to fit my experience. I am trying to just live one day or even one hour at a time, trying to take care of myself as though I were a "patient"--trying to exercise, eat well, do little things that bring me pleasure each day like crafts or writing in a journal, and trying to give myself the space and time to really grieve. The fact that the holidays are here is something I see as an obstacle to get over, but I am going to try to enjoy something of it. My mom and my dad, if they were still here, would definitely have wanted that. I think sometimes, just looking at me from their perspective helps me move, even a little bit, further along the path to recovery. In the new year, I am also going to seek out help with a grief recovery support group near me. I think that would be a constructive way to pass the long, cold, dark winter months while the process takes it's own path.
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Caregiving a difficult person is not something other people can truly understand. It's very complicated. The emotions are complicated. In the words of Stewart Smalley, we "should" ourselves to death. (He was played by Al Franken on Saturday Night Live in the 1990s.)

This type of caregiving job is full of constant worry and self-assessment, second guessing, and little undermining thoughts that never stop. Some of this comes from the life-long programming we've had from the difficult parent. We aren't even aware we do this to ourselves and believe that if we were doing a good job, none of these thoughts and beliefs would plague us, but that is not true.

When the caregiving role is over, I don't know what to expect. What I think will happen to me in my situation is that the complicated feelings will remain complicated and unresolved. There will be no instant relief and inner calm that spontaneously erupts. I expect it will take me some time to become accustomed to the new normal where I don't have that difficult person to navigate anymore. I liken it to an amputation, where the amputee can still feel the phantom leg.

I am 44 tomorrow and have never had a day in my life where my difficult mother was not present in some form or another. She has always been there in person or through the programming of my thinking. I hope I can get to the point where I've been able to filter out and keep the good and truly, finally, really let go of the bad.
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2burnt, Have you ever taken you mom to a day program? Taken her to get involved in activities at a senior center? And left her there without watching to keep an eye on what she is doing, who she is talking to? Maybe trying a couple of weeks of respite, with her in a memory care facility while you and hubby take vacation or just stay at home, enjoying each other's company? The staff in these communities are experts in care and know many, many tricks to comfort and care for the elderly. They have seen it all. What would happen to Mom if something happened to you and/or hubby? Something would have to be found and other care provided somewhere else. You could even tell her that you want to start trying these places out, in case something does happen. She may surprise you, as many family caregivers have been, she could very well blossom with her own peers to talk to and do things with. Give it a chance and do not give her a choice. You have done plenty and it is time for you to take care of yourself.

And do not make the mistake of thinking that nobody can care for her the way that you do. While that is true, and nobody knows her as well as you, people learn, and do things differently, and it still works, sometimes better than what is expected.
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Hm.

You know what strikes me? If your sacrifice is going to make no difference to her happiness and her quality of life, then what's the point of it? You can't please her so you might as well please yourself is the crude way of putting it.

My mother drove me nuts. I miss her terribly. My siblings, on the other hand, though I'm sure they miss her in their own way, whatever that is, are full of the joys. Ah happy memories, they chorus. Happy memories my eye. It's easy to dwell on the happy memories if you ignore the rest of her life.

So what am I saying? I'm not sure. I did 'take mother with us', I did care for her until the end of her life, if I'd known then what I know now would I have made the same choice? I'm not sure about that, either. Probably I would have done, if only out of pig-headedness. My mother, too, was not a mixer and not a volunteer for residential care. Also full of little ways, hem-hem. Also not open to change…

The thing is, your mother can't change so there's nothing you can do about that. But there is a lot you can do about how you react to her, and how aware you are of what influence she might be having on any choices you make. You won't necessarily make a different choice, mind you; but at least you can be satisfied you've really thought things through. So I think I'll yet again recommend 'Understanding the Borderline Mother' by Christine Ann Lawson as good reading before you make any irrevocable decisions.

Best of luck. Keep us posted.
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Thank you both for your insightful comments. I'm afraid I'm going to be dealing with guilt after all is said and done, no matter how much I tried to care for her. She would want me to be with her most of the time. I do take care of her needs and try to make her life as comfortable as possible. With that said, she's alone a lot. I take her out daily and tend to her multiple needs but I'm try to save whatever is left of myself for the days, months and years to come. Assisted living is not an option because she's anti social and is one of the rare few that would never adapt. She a canadian women that is not only set in her ways but impossible to change. My husband is preparing the house/business for sale. It could take years to sell but it may not. Wherever we go, she will come with us. I was hoping to stay here until she passed away so that I could leave all memories behind and make a fresh new start. I know as caregivers you both understand the mixed emotions of and guilt and resentment and wishing we could carry out this daunting task with joy in our hearts. All the little things are what makes me crazy and her frequent comments on how hard something is for her to do now (which is a cue that I'm to take on one more responsibility). It's her M.O. and it always has been. I suppose it is what it is. There's no joy in it but I'm glad I can provide her with a home and a life that makes her as happy as possible. It's sad that when all is said and done, I'll be living with sadness from her loss, the wish that our relationship could have been better and guilt for not giving up more of myself to her.Every day is like a roller coaster ride of emotions. I'll wake up worried about the day I no longer have her, then I take her out and I want to be 100 miles away. ugh....
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2burnt, I'm not sure anyone can tell you how YOU are going to feel once you get to the end of caregiving. But I can say that feeling good, as such, would be rare. Knowing that you did everything you could humanly do is the best you can hope for. I think perhaps your personal tangle is defining that "everything" and that "humanly" - or reasonably - is it?

You say that you are everything to your mother. That's her choice. But she, however much you love her, and whatever the imperatives you're carrying from your upbringing, is not everything to you. You have a husband. You have your own life. You say, too, that you are legitimately tired of caring for her and I think you have phrased that very tidily. You have already done a great thing for her. Now you have the right to make your own choices.

If your (direct, hands-on) caregiving ends when you and your husband act on your retirement plans and your mother goes into residential care, you will likely worry about whether you have made the right choice and you will likely feel guilty.

If - may she live forever - that caregiving ends with your mother's death, you will likely worry about the quality of care you were able to give her, and you will likely find things to feel guilty about.

They get you every which way, you know. That being so, take into account your other priorities: your husband, your own wellbeing and interests.

You say Assisted Living is not the answer. Were you thinking of selling and moving on and taking her with you?
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2burnt, I can certainly identify and will tell you how I am feeling. After four years of caring for my mom with Alzheimer's and her hubby, L, they were placed nearly a month ago. The move has been very hard on my mom which it commonly is for those with the dreaded disease. And it has been hard on L as well, he is in assisted living, mom in memory care. See, how it is I am trying to tell you how I am feeling, but where do I start? With them naturally, caring for them was my life for four years.

Trying again... Initially, it was sort of an empty feeling, and very quiet. Just not at all sure what to do with myself. It took two weeks for me to go to get some groceries because I don't know how to buy or cook food for one person. One big change is most of the time I am sleeping better. There are not 2:00 and 4:00 am trips to the bathroom when I could not get back to sleep afterwards. I feel as if I should be doing more to try to regain my life. But for now I usually am at home, working on resumes to try to restart a career that I loved. That is enough right now. Oh, and play Candy Crush, and talk to my dog and pet her. It is really relaxing to feel there is nothing I really have to do right now. I get irritated with myself that I am not working on the employment issue more and harder. But, the only good that would serve is to get me more stressed out.

And naturally, I worry alot about mom! The move has caused a very significant decline and sundowning behaviors are probably increased about ten times. And I worry about L, he feels as if he has to spend nearly every waking hour with Mom. You can see how tired he is and worried. I visit about twice a week, and sometimes do not even want to do that. I guess, I feel I have to do that much anyway. I have two twisted sisters that did next to nothing to help for four years. Now they are on their best behavior in an effort to look caring and attentive to staff at the facility. So, I wonder how long that will last. At one point we were told no daughter visits for awhile because of mom's behaviors related to worry about her little girls that becomes agitation when she cannot do what she thinks she needs to to find them.

That is about all for now, I am still in the very early stages of this adjustment. One day or hour at a time. Best wishes to you. I am just feeling a bit lost, I guess.
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