When you caregive out of duty rather than love...

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I saw a woman crying today at the Assisted Living facility where my mother lives. She was being comforted by staff because her mother just died. Once again I was confronted with my lack of love for my own mother. I have helped her for 18 years doing increasing levels of care until she moved to AL over a year ago. I still visit regularly, pay her bills, get her sundries, clothes, go to appointments. I strive for patience. Resist manipulation and I lie a lot. The biggest lie is saying I love her. I feel compassion, responsibility, duty. That's as good as it gets. Or ever will.

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So agreeing with Treeartist! Say something. Ask for help. Demand help. Tell them the ugly truth. 

For five years Sister 2 lived with Mom as her caregiver. When I visited a couple years ago it was obvious she was on the edge of stroke or heart attack. We all worked to get S2 out to live in her own house and Niece moved in. S2 told me, "Thank you for hearing my silent plea." While I appreciated hearing a thank you, that she didn't say anything for years smacked me in the face. We would have done something to relieve her pain.
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She, I wish I lived close so that I could come give you that respite. You described the recent family outing and how everyone thought your husband was doing so great, little knowing about your sadness. It reminded me of the quote, something about how many of us live lives of “quiet desperation”. I say stop being quiet about it! What do you have to lose? Face? This son, daughter, and yes, the former wife, can step up. They will continue to smile and comment on how well he is doing with little hands on contribution as to what it takes for him to appear so, unless you let them know the truth. It sounds as if you have been the “Assisted Living” for your husband, and now you are to become the “Nursing Home”!
Please let them know about your exhaustion and need for personal time. It is easy for them to believe the fantasy that you don’t need assistance if you never advise them to the contrary.
In addition to the professional caregivers and us that helped my parents prior to them going into a nursing home, we also had two hours a day, four days a week, that was free. I believe it was through the state. Check with the Area Council on Aging or Adult Protective Services. There are some free services available.
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Though I have responded in this thread previously, after reading so many stories, I feel the need to respond further. I drove my husband to his daughter's home this past weekend for lunch -lunch which I purchased in the grocery deli section, as she was not offering food though she wanted us to come so that she would not need to come here and, as always, when she visits, bring her dogs. The drive is only 30 minutes and I felt it would be good for him. It was. I kept hearing, from his son, daughter and former wife,(she has been awesomely supportive, and she and I do get along well), about "how well Dad is doing". He always does better when he is around his kids. I know this is common, and that is why is so hard for me to go day after day, week after week, month after month, dealing with the hundreds of issues and behaviors that they do not see. He is cheerful and mostly cooperative. That is their full perception of his dementia. In the earlier stages his daughter had him come to her home on two weekends and that was heaven for me. That is no longer possible, as she has a new home with all bedrooms upstairs, and someone needs to sleep in the same room with him, monitoring his toileting and his every move. Today I get to go to the community support group, and though I am looking forward to the two hours that I will be out of the house, what I would truly like to do is have one day, even a half a day to see a movie or have lunch with a friend, or have someone take him out for the day so that I can tidy up my home a bit and then take a nice long uninterrupted nap, to have maybe one day a month without having to be constantly vigilant, without the worry, the angry behaviors, the accusations, all of those things that gradually wear me down to tears and cause me to want to run screaming into the night. That is where I am and that is where he is. The reality that this may go on for years and that things like his nighttime incontinence will become full blown 24/7 and him unable to clean or change himself, bathe himself at all, is so overwhelming. There simply is no money, no savings, nothing but me to care for this human being who used to be a man I could hardly stand to be away from. I know that negativity is contagious, and I apologize for these thoughts, but I am grateful for this place to vent.
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Already put a lot of this tale over in the 'dysfunctional families' thread but.. it's really hard that my mom expects me to heroically put aside my whole life for her care when she has never done that for me after I got to where I could feed myself. When I was five years old she went back to school, then to law school. All my life it's been about her passions for social justice and how she could make a difference... well, while she was off at the campaign rally or march or whatever I was home alone, my dad also worked long hours. I have an 8 years older half sib who also suffered a lot from this behavior... we're not in touch partly because of it.

Sometimes she's so unempathetic I truly wonder if she has a personality disorder, not that she'd ever admit there's anything wrong. Seriously, it's like she doesn't realize her decisions have impact on other people.

For as long as I can remember I've gone through periods where I would just give anything to get away from her. When I was 20 she left my dad (after he had been diagnosed with a serious illness), leaving her free for whatever she wanted to do. A few years later I moved 1000 miles away to get away from the family dysfunction and she moved there after me.  Four years after that I wound up moving back to the state our family was originally from to take care of my dad after his illness required major care, and she moved after me again.  At that point I guess I just figured there was no escape and I was going to have to find a way to deal with it.  I never had kids of my own partly because of this, she's always taken up so much of my mental space (although admittedly some of it is that my husband is a great guy, but he's passive and I would have wound up doing most if not all of the work.  Didn't see much point bringing another person into such circumstances.)

I don't know how I'm going to live through the next 20 years. Some days I wish she were dead, some days I wish I was. Time for more and better counseling, I suppose. Thanks for listening. 💗
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BlackHole: So sorry that your mother didn't "rebuild herself" over the years. I try to help myself out even though sometimes I may have the strength to such as going to the physician when needed, etc.
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I had a sudden recollection of a conversation that pertains to this thread and how it seems "bad" to not "love" giving care and that it's "bad" to do so out of duty. When my now-ex-husband and I were in the military, we were discussing some troops to be put up for Airman of the Year. He rather poo-poo'd one guy because DH said the guy volunteered but only did so for it to look good on his performance reports. I replied we can't control what people feel in their hearts--it's what they DO that counts. There's nothing bad about people who volunteer to do good things no matter their motivations--it's all good to do good.
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My mom was a “soft” narcissist. Scarred by a rough childhood, and rightly so. But an adult, Mom never did the work or made the right connections to re-build herself. 

In Mom’s purview, what was right or wrong with her life was 100% everyone else’s doing. And 0% her doing.

There were several “saves” over the years; none permanent. Mom’s first marriage, to my father. Having only one child (me), to serve as an extension of herself. A religious conversion experience. A 2nd marriage. A 2nd and different religious conversion experience. 

Ultimately, they all let her down. 

Although these stripped-down descriptions sound harsh, Mom cloaked her narcissism in being “nice,” “so generous,” “so thoughtful.” As I heard all my life. From the people Mom made sure never got TOO close.

One persona for the outside world. A different persona for the small inner circle.

Mom meant well. She really did. But scratch the surface, and underneath was a control freak. Born of fear and fueled by insecurity.

Took me decades to understand that Mom only befriended fellow damaged people. Usually entering their lives as a helper of some sort. Whether they wanted the help or not. 

No boundaries. 

Most of the relationships would fade when Mom grew to disapprove of someone’s decisions. Or when he/she didn’t “need” Mom anymore. Sometimes Mom would simply realize she was being used.

But the ones Mom dropped like a hot potato were the ones who emerged from their crisis with self-awareness, self-discipline and motivation. And did not let their bad experiences define them.

Mom spent her whole life fetishizing “normal people” and “normal families.” Yet so uncomfortable in the reality of just that. Mom never understood that healthy relationships resulted when ALL parties listened, respected and worked together.

Whenever Mom had a glimmer of realizing that SHE TOO would need to be a partner — and not a controller — she’d shut down. Switch gears. Lose interest. Fade away. Find a new fixation.

I can relate to the folks up-thread who said (I paraphrase) “I always had to lie a little or pretend I agreed with things I didn’t in order to get along with Mom” and “I’d just say ‘Yes, Mom. Yes, Mom’ to keep her from driving me completely crazy.”

Mom was so resistant to certain forms of normal human discourse. It just wasn’t worth it.

When I was growing up, Mom always praised me for “being so mature.” Mom’s praise was sincere, and I ate it up. I identified with it.

In truth, Mom was grooming her little mirror, her Mini Me. And what the h*ll did I know? I was a kid!

As I truly matured, Mom had less to be thrilled about. And that rocked her identity. 

No boundaries. 

Mom loved me. So much. But Mom struggled with relating to me as an adult. And I refused to take responsibility for this. Refused to fix it for her.

Nicely refused, I might add. Mom and I got along fine. We cared about each other. We shared laughs. But drop-in visits or vacations together? H*LL NO.

Our conversations were sometimes not frequent. And never super-deep. That stuff always led to “Mom’s way or the highway,” so I’d head it off before it started.

Mom truly believed she was too busy to make time for me. And I let her believe it.

The real story? Mom was too self-absorbed. Too disorganized. Too distracted by her latest passion to fix something or someone that could not be fixed.

In short, Mom could not relate to secure, highly-functioning adults. When I grew up and became one, it became Mom’s greatest joy and her greatest disappointment.

Because Mom lacked self-awareness, she projected the “fix” onto me. She spent 30 years telling everyone that I was too busy for her — without recognizing her own role in the disconnect.

I never doubted Mom’s love for me. But caring for Mom in her last years was difficult. As I matured and well into adulthood, I did a lot of work to shed the label of being the sh*thouse answer to all of Mom’s problems. Then BAM. The old-age deficiencies.

I never made a plan for that. Neither did Mom. It was rough. Complicated by the fact that I was NOT Mom’s only resource. She just acted like it.

When it was advantageous for Mom, she would pay lip-service to managing her decline in a way that did not suck the life out of me. Mom would flip this switch and deftly skate through an uncomfortable conversation. Or reassure those on the periphery.

But Mom’s actions spoke louder than her words. 

My tango with Mom’s self-neglect — while addressing the neighbors’ and step-family’s perception that I was neglecting her — left me depleted beyond description.

Jeezus, what a ride. Thank heavens Mom is the last parent I buried. And I got through it without screaming in anyone’s face, “She’s a goddamm liar and you have no idea what really goes on in that house.”

Small victories. 😐
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Trust me Rosyday....you are not alone. I, too, say I love you, but only on very rare occasions. It is difficult for me to say that out loud to my Mom. You're right ....compassion, responsibility and duty play into what I do for my Mom. Tho, I think duty is the biggest one. Mom even said to me today when she wanted me to go up with her to her floor and I resisted, saying that she could do it alone. Asked her why she needed me to go that far with her and she said because she might get lost. Then she said...sorry...but you asked for it! Meaning, since I was her only daughter I was the one who had to take care of her.
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I think it is healthy for you to admit that this is what you are feeling. I think that there are so many who dare not say what their hearts feel. But I also believe that there are many levels and kinds of love. My husband and I did not have a perfect marriage even though we started out so well. But it was the second marriage for both of us and we sort of made a pact that we would work hard at making space for each other in order to make it work-and it did. We decided that there was enough good and that we would be "witnesses" to each other's life. He took care of me when I needed it and I him. But this journey has undermined that pact so much. This person seems not, in any way, to be the one who I married. That amazing man has been destroyed by this illness that is different and more insidious than any I could have imagined, and no amount of "therapeutic lying", of breathing, of going to support groups and listening to the many stories of other caregivers who say they've mastered their anger, frustration and exhaustion, can cure. I care -deeply, and I will be forever grateful for the years I had with the handsome, funny, talented man I married. I know he would hate who he has and continues to become and he would hate the toll it is taking on me-on us. All I can hope for. Is that he does not suffer and that I survive this thing called dementia, any longer than we have to. Please know that I honor what you are going through.
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Lassie: No, life is not like any of the those tv shows,'The Waltons." You just helped me to realize that that is why my brother is not in touch with reality, e.g, he watches those shows and went all the way across country when our mother lay on her death bed, leaving me alone!
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