A number of comments lately have mentioned or alluded to the hope of gaining something spiritually from the experience of caregiving. That idea always resonates with me, and I'd like to explore it a little more.
I've been a caregiver in a number of different situations - for a lover, two close friends, two siblings, and a parent. I have found deep satisfaction in all of those situations, EXCEPT for the most part in caring for my mother.
I think for many people, illness and dependency strips away artifice, and allow a person to allow himself/herself to be unusually vulnerable. For the caregiver, it allows you to connect very deeply with the person, to tend to their needs, shield their vulnerabilities, and soothe their pain and their fear. Being chosen by someone when they're most vulnerable and in need feels like a great honor, and being with them in their time of need feels like an amazing privilege. I cherish the memories I have, of a dear friend allowing me to shower her when she was disabled after surgery on her shoulder, of my sister calling me with the flu and saying right out "I need help. Will you help me?" I remember washing another friend's hair in her hospital bed when she was laid up from surgery. These are not interactions that we normally don't experience in everyday life, and they're very special.
Then there's my mother. I find it impossible to get much satisfaction out of helping her, and I think it's because of her overwhelming sense of entitlement and her need to control everything. I don't think she lets herself be vulnerable except as a manipulation, when she can't get away with outright demanding something. I think she can't stand to think of herself as needy (or think of anyone else as having any autonomy or choice), so she presents her needs as demands and expectation, and it's impossible to feel good about meeting them.
I keep thinking back to something the author M. Scott Peck said, about how love is the willingness to extend oneself for one's own or another person's spiritual growth. He also said that a loving person must be careful not to waste their love on those who are capable of benefitting spiritually. That's the situation I feel I'm in with my mother - wasting my love on someone who is incapable of benefitting spiritually. I can satisfy her material needs, but that doesn't satisfy me in any way. I want that deep closeness, that connection, and I think it's like electricity. Unless there's a complete circuit, it won't flow at all. That's my love for my mother, stopped at the source.
Sorry for the rambling. Maybe enough to spur others of you to share your thoughts?
In this very mixed up world where so few care - we are trying beyond trying to care and love for the sake of one poor soul who has lost so much of their life and are now dependent, and in the bigger picture to make this a better world of love and caring. In the end it is not so much about us and what we get out of it, but what we create for a better world (and individual elder) - the more far reaching implications.
It is not fun, it deprives us of a good deal of freedom and peace, it is heartbreaking! But, we live in a cush world today - think about those who gave and cared and nurtured so much in concentration camps, or still today the strife around this world under such extreme circumstances - the stories of those who give and give. What are we called to do? Give to one elderly person in need who may or may not be pleasant?
I am no Polly Anna - I try so hard to keep the big picture in mind (and believe me sometimes I cry real hard about it too!). In the end, I am dedicated to doing the best I can for someone who needs me and my love , my mom, no matter what. It is a commitment. I hope and pray that someday, God will have greener pastures for me. Hope is important!
I think another issue we face is the lack of understanding support and empathy (perhaps why we are all sharing on this blog). It is a lonely feeling, and maybe unless it is a parent and a loved one, folks just can't relate and provide the deeper complex support we need - or the not so deep practical support. I think that the problems with lack of empathic support in our lives confuses our sense of the spirituality behind what we do. In the Christian faith, we are to be Christ to one another, and when that falls short it is yet more disappointing. I am sure other faith traditions can weigh in with their own analogies. It seems thankless and not understood, I have to believe that on a much greater plane, it is right and good! Love one another as I have loved you. Just love for the sake of love and loved ones... the rest will come into focus sometime.
Before caregiving I HAD a spiritual life: happy, meditating regularly at a temple, going to special gatherings with people in this temple, pursuing my dreams, and always smiling from within. But since my mother moved herself up here from Florida 7 years ago, I hardly know who I am anymore.
The temple moved farther away, and the mother wears me out so much I have no time for any friends at all, and meditation fell out of habit too. When I am with Mom, her bossiness, annoying non-stop yaking, her self centered demands, manipulations, fakey behaviors and so on make me not even willing to smile at stranger. All those traits of spiritual development: inner strength, unshakability, patience, peace, tuned in to one's inner joy, higher thoughts about God, and so on: all drained away over the years. The temple moving just out of reach for me was the tipping point. But I haven't totally given up and find myself coming back to my own joy: even sometimes during the hours with Mom. But I am not close to being my true self until I am not with her. A day or so after being with her I find I like myself again. It's like constantly being wounded, healing and having to experience the wounding over and over again.
The anger and resentment I feel is overwhelming and there is little satisfaction even when Mom tells me she appreciates me. She doesn't realize how she hurts me and is unaware (and not interested in any type of honest talk that might make her look at her imperfect self.) We get along on a superficial level that is created to appease her, and to suppress my own needs. Underneath I am seething with anger, releved only by my occasional relaxed humor, or pretending I am alone, or pretending to have fun, or something as fakey as she is. It sure seems like a no-win situation!
There is no one else to help her. My brother is taking care of Dad. My sister is in need of care givers herself. I'm it. I try to make her have a good time when she is with me, comfort her, get her what she needs, I set my limits, and let her react the way she does. She used to call me Bitch, and really was abusive. Now she knows better. I try the old behavior modification approach and try to fan the flickering flame of love that is left.
I know God and my conscience is observing me, even as I observe myself. For sure I know I have had to experience the old childhood feelings that never were expressed: and I think that this passage was worse than a horrible disease for me. My mother was physically abusive and has Borderline Personality Disorder.
she has many good traits but her annoying habits and lack of awareness of others is very tough to ride with. Plus she is constantly fidgeting and trying to control every detail. I had to laugh last night. She was in in the ER (the day before I go on vacation: how typical). I walked to go to the bathroom and I heard her yelling at someone demanding something. When I return she's in the other mode, the oh I am so cute mode. It's so tiresome and fakey. Makes my tummy turn just to think about it.
Her time on earth for this lifetime will be up soon. I don't know if I'll miss her or not. I 've been saying good bye to her for over 6 or 7 years now. You all know how this is.
Well I'm getting ready to go on my 4 day mini-vacation: just some time with my old friends in a different state and I know I'll feel great as soon my tires hit the road tomorrow.
Happy New Year. Let's keep this thread going as we try to grow from these times.
Back to Spirituality: I believe that we are all "...spiritual beings having a human experience;" (Pierre Teilhard de Chardin, 18??). When I became permanently disabled, this belief, and all that it entails, helped me greatly to accept what is, and what may be. It's been 11 years now of my body & mind being "homebound," and for some reason, I'm having more emotional difficulties now. Perhaps because things are changing within; in other words, I am letting go of certain beliefs about my family, expectations of self and others (especially of self! That realm does not belong just to caregivers - guilt and self-denial are universal, no matter the situation.) Therefore, whether care-giver or care-receiver, the most important things I can do are: 1) Relax. Take a breath. 2) make decisions based on my best interests and needs; 3) See a therapist regularly (mine is spiritually and medically degreed, whoever works for you is best!) and most important so that none of you get sick - only do what makes sense for you. Please believe that internal and brain stress are emotionally, spiritually, and physically debilitating. Finally, peruse the internet (look up peruse - it does not mean scan/skim, it means to read very carefully and deeply) for those "spiritual; self-help; religious; positive-thinking", etc. websites that provide what you need inside. Speaking of inside - get outside to relax! Not so easy for me, either. Some days just want to watch tv, sleep, etc. But nature and fresh air - wherever you live - is very close. One tree can make me feel that all is well. Look at it - or a bird or anything - a baby! - closely, feel that "electricity" connection which is for all of us. Breathe. All is well. One way or another, all is well. Thank you for this topic which allowed me to talk about something that helps me so much, and I hope can help you! Please work on releasing guilt, omg. That's the hardest one of all. It doesn't mean you don't ever have to say you're sorry, or that you've changed your perception of things. Say that without guilt, as in you realize you have nothing to feel bad about, because everything is spiritual, and every moment is a learning experience. From "A Course in Miracles (paraphrased): You can choose love or fear, but know this: only Love is Real."
When I worked in elder care, I did feel a great sense of well being (spiritual uplift?) in providing for my clients what they needed, but could no longer do for themselves. One client, in particular, was hard, in many ways, but I learned a great deal from her. I am a "spiritual" person and also, somehow, a born caregiver (or one by the necessity of life's haphazardness.)
I believe that when we are serving our fellow man (or woman) we are actually in the service of God. It's very hard, and sometimes, it's impossible to see any good in what I do for my mother, but for about anybody else on the planet--I'm ready to help.
Parents are without question, the hardest to care for, if you do not have a good strong based mutual respect. My mother is just now, as she is entering into dementia, being truly kind to me. I am really sorry for her, but kind of weirdly happy for me. She's NICE to me for the first real time in my life.
I do feel a little bit sorry for my sibs who have NOT bothered to care for mother, difficult as she is. When she dies, I know I will be fine.
Caring for daddy before he died was one of the greatest blessings I've ever received. That may sound odd, but caring for the one person who loved me unconditionally all his life....it was an honor.
In general, I try to find at least ONE person or activity per day to which to give some service. Selfishly, it makes me feel better.
I once heard this, and liked it: Service is the rent we pay for the space we take up on the earth.
Each year I make Christmas dinner for my mother, out of the goodness of my heart, because nobody else invites her (or me!) and Christmas Day is an awful time to be stuck home alone, especially if you don't cook. This year I invited my mother's housemate/caregiver and my brother in law (the one married to my sister who died this summer). We got to talking about all the elderly widows in my mother's neighborhood who pester my BIL for help because they have nobody else. I thought how blessed my mother was to have a lovely dinner made for her in her home on Christmas Day, with no effort or expense on her part, plus company to share it with. I know in her place I'd be over the moon with gratitude and pleasure. My mother, not so much. It never occurs to her that "there but for the grace of God" goes she. It would mean so much to me to be able to "surprise and delight" her with a fabulous dinner instead of her just expecting it as her due.
That's what I mean about spirituality. Not necessarily spiritual growth, but at least the opportunity to find meaning in the sacrifice of caregiving. That would make (and does make, with other people) such a huge difference for me. We deprive others of meaning when we expect their gifts as our due.
As I handed my hubs 1/2 c. of yogurt (sharing), he started to fuss. You know, the usual (instead of thank you) he says, "oh, that is too much", and "Are you sure you don't want more?" attempting to be kind? Not one to want a conversation about yogurt this early in the day-or really, if you know me well-don't even talk to me before 4:00 p.m, so I said this to him:
"In heaven, I am sure no one is ever going to be handing you 1/2 cup of yogurt, waiting for you to take it out of their hand while you lay there flat on your back
commenting......" "Well, I have never read it in the bible anyway".
Native American Ten Commandments
1. The Earth is our Mother, care for her.
2. Honor all your relations.
3. Open your heart and soul the the Great Spirit.
4. All life is sacred, treat all beings with respect.
5. Take from the Earth what is needed and nothing more.
6. Do what needs to be done for the good of the all.
7. Give constant thanks to the Great Spirit for each new day.
8. Speak the truth: but only of the good in others.
9. Follow the rhythms of nature: rise and retire with the sun.
10. Enjoy life's journey but leave no tracks.
My folks are still pretty sweet people but it's all still a major pain in the *ss. I'm the last one on earth left to deal with them and I resent that fact and don't like it one bit but there's that obligation thing like the 800 pound gorilla in the room.
This is where caregiving keeps bringing me. And I keep not being as perfect and loving and compassionate as I want to be - or as I sometimes tell myself I 'really' am. I too often snap at Mom when she once again has taken off her Depends and not replaced them, resulting in a cleanup. Or when she keeps telling me (for the 10th time) that she can do something herself that I know she can no longer do, while I stand by with a workable solution and a growing head of frustration. But that is not my Best Self. That is my Teacher Self who often seems like a twisted, evil twin, but who is in reality showing me where my next step toward spiritual growth lies -- in developing patience as evidenced in controlling my temper and my tongue, which can be cruel.
There is also a highly broken and dysfunctional brother-in-law living with us and he is even more of a spiritual teacher when I allow it. I have had several months of hard-heartedness toward him and am just now beginning to be willing to try to be kind and compassionate with him, at the same time as I set clear boundaries.
In fact, he has led me to distinguish a couple of terms. When he demands or "takes" care, he is a care taker -- which is based in entitlement. It makes it harder for me to be a care giver -- freely offering help with a loving heart. But that is what I want to be -- a care giver with healthy boundaries. Tough combo to bring about.
My Mom is, at least, a "care receiver/allower" most of the time, appreciating what I do and not expecting much, which leaves me freedom to 'surprise and delight' rather than trying to keep up.
Both of them have helped me see myself more clearly as someone whose self-centeredness is still strong and whose compassion needs to grow a lot. I don't yet know how that squares with my equally strong understanding that God has a life for me that includes more adventure, learning, and interest beyond just this. But I have chosen to trust that whatever I am learning now is a necessary foundation for being the person I want to be in whatever post-caregiving life may await me.
The sad thing is that during all these years where my mother has been dying, she has not been anywhere near death. I think she is dead inside, though. And I don't think she is a good person. I don't think she feels love for anyone, but feels they should show her complete devotion. She seems to dislike me, but knows she needs me to be her servant. She is still dying every day all day long, but I don't know if it will be another year or another 10 years. She doesn't seem to get any gratification from being sick all the time except that no one expects her to do anything. Of course, I can't say anything because I'm terrible if I do. She is my mother, you know.
I really can't believe that she and I are related. If we chose a life before we are born for some reason, I can't imagine why I might have chosen this life.
I do have to respond to a few of the comments, to set the record straight. As to what Ferris1 said, my mother is well aware how I feel. I'm not one to go around with a fake smile and pretend everything is peachy keen. She knows I don't want to take care of her and I devote as little time to it as possible. It doesn't help me to express that to her, and her reaction (indignation and resentment) doesn't help me either. I don't post here because I'm so pent up that I need to vent to total strangers. I post here because the members of this forum are other caregivers, many of whom are in similar situations, and I get understanding and support from them. That's the key thing, not merely the opportunity to vent. The "total strangers" here know me and understand me a lot better than my mother does, or wants to. That's why I talk to them.
As for all the "love your neighbor" advice, I realize I opened the door to that when I started talking about spirituality, but I don't buy into it at all. My code of values is very personal, not centered in the Bible or any religion. We all my be equal in the sight of God, but in my sight, absolutely not. It violates my ethics to devote attention and energy on someone whose behavior and attitudes so affront my personal code of values. That's why this obligate caregiving is such a thorny thing for me. I accept that someone has to do it, but I'm tremendously conflicted about the fact that it has to be me.
I would confess my anger and feelings to my priest until finally he recommended a book "Toxic Parents" - which was an eye opener and a life line. Hurrah for "spiritual" advise! Now I set boundaries. They hate it, they fight it, but they are the angry ones, not me. I do what I want to do with love, and no to the rest. It is not my problem that they didn't plan for their elder years and thought I would be an open checking account for trips to the casino, rent, etc.
Perhaps if either was the cute, clean, cheerful grandparent in a Norman Rockwell painting - I might feel differently. Not a spiritual, love humanity, good in everyone post, but I just got back from five days of Christmas with them. Holidays bring out the emotion and they replay to me every thing I have done to let them down.
And when I have these feelings I look at him and say ,God bless him, so I pretty much am saying it all day, then sometimes at the end I say and God help me.......and He does and we go on and do the Right Thing
Grace + Peace,
Bob
I think it is also as CWillie says, "I think it is hard to feel positive about the caregiver role if you never get any affirmative feedback".
Also Cwillie makes a good point in allowing things to "be" rather than rationalizing the arguments relating to caregiving value. For example, she mentions how dementia has stolen her mother's ability to see the world outside herself.
To be honest, I believe we are never prepared enough - not to the degree in which we often find ourselves weighing the merit of our contribution. Because, as a caregiver if you have no experience in this role to a tough degree, it is hard to imagine the depth at which we struggle to challenge ourselves for answers. In other words, we have to go through it to go through it. While many books offer some insight, I think it is impossible to know all the situations particular to each person. All of us have different coping skills and varied relationship experiences. I am not totally the person I want to become, so throw that into the mix and it's a tough grind. Maybe that is the lesson. I have no clue.
I do know that I ended up asking myself a lot of questions I may not have vexed myself with before. Deep spiritual questions about consistency, showing up every day, spirituality and getting to know myself above all else. It has been a sort of maturation into myself and applying these lessons (after I fight them!) to become closer to what I want to develop into.
I feel damned if I do or don't when I have to choose between my kids and my parents. Especially around the holidays. It can drop me to bended knee asking what is the best course of action. Divorce can make relationships with our children tought, too so it is not like I am always chosing the best as it were...and then the parents negativity and deep isolation I find myself u against in trying to get them to connect is equally as rough. If I were to be honest, I would say I want to go out to see the northern lights in a freakin teepee in Canada after dog sledding all day and drinking hot cocoa. That is what I would do if I could. But I have to choose and neither feel so hot right now. But the relationships with these people are not what I had hoped and I want to pick the next thing I would or might enjoy - which is what I just shared.
The net effect is knowing what I might like to do one day and can do one day - its planning for things - which I had not really done much of before. And since those relationships are not so good, I can commit to doing the alone if need be.
I would consider this part of spirituality. To myself and how I want to live better in my head and dreams. For a long time even thinking about such folly was off the menu. I am reintroducing the notion that I don't have to live this way forever and that if they should pass before I do, I will know I did the best I could in that moment with what I had. I know there are ties I am heart weary and depressed and I cannot drive myself to be more for the - but I am human and I hurt when they hurt. I know their dreams are tings they seem to have given up on. I cannot rouse them to dream or hope again though I have tried. LIving this with them is hard.
I don't have the answers. Maybe hope and faith is enough. And to live this moment as best I can and not pin it all on SOME DAY because today has got to be good enough. Anything can happen tomorrow.