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Dan Gottlieb says:

okay everybody I am anxious to hear how the experiment went! and if you haven't tried it, then just spend 24 hours not saying anything negative ab...

Topic: Solitude and Loneliness

on Tuesday, May 22, 2012 1:03 PM EST

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Dan Gottlieb says:

when I was in Denver last month, a young man on a bus approached me and said "God wants you healed". My response was: "where did you ev...

Topic: the view from here

on Tuesday, May 22, 2012 12:58 PM EST

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Healing the Mind and Heart

Daniel Gottlieb, a practicing psychologist and family therapist, will be live in this section every Tuesday from 3-4 p.m. ET. Leave a question or comment anytime for him!

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174 Posts

What I learned on my summer vacation

By Trish-411

I took a little caregiving break the other weekend. Something I rarely do and really this was the first time in 9 years since my husband’s SCI that I went away solely for myself. It was something for me and about me; just me. I almost feel guilty even typing that.

My weekend was just purely a delightful time: a relaxing atmosphere, beautiful scenery that I rarely take the opportunity to experience, a wonderful friend, good food, good and interesting conversation, and lots of uninterrupted sleep. I didn’t take care of anyone or anything. In fact, people took care of me which now feels rather awkward and uncomfortable for me.

But in the process I learned a few things about myself. And maybe too, the experience left me with more questions than answers. I discovered that I am still mourning things that have been taken from me like walking on a beach with my husband and experiencing the “normal” family dynamic that I thought I would have in my life.

I also discovered that mostly I am surviving life and not experiencing life. I feel like I have lost much of myself to my husband’s SCI. When faced with the question of, “do you want to eat something?” I found myself saying; oh I’ll just eat when you’re hungry.

Who says that? Seems I no longer even know when I want to eat or when I want to go to bed or get up. I have spent so many years cooking and eating when my husband needs to. I have spent the last 9 years, sleeping and awakening on his schedule regardless of mine or how I’m feeling. I live in a beastly hot house which is often uncomfortable to me but is just right for him.

And suddenly when I had the ability to decide for myself, I didn’t know how to do that anymore.

This weekend I got an email from a caregiver friend of mine. She is the wife to a C4 quad and has been doing this for nearly 30 years. What she said to me was this:

“I've missed so much of life My growth, my identity has been stunted.. I feel like I've been damaged by the length and intensity of my caregiving. I am haunted by the potential life I might have had.”

I knew exactly what she was saying. Her frank comments brought tears to my eyes, tears for her and her situation and tears for mine. I don’t want to be thinking or writing those words about myself in another 5 years.

The question that haunts me is how do we manage to still be the caregivers we desire to be or are committed to be without losing ourselves? And when we start feeling like we are lost, how do we find ourselves again in the midst of caregiving? Is that even possible?

2 Posts

Nelson says:

Very interesting consideration about SCI and those who take care of us with it. I would like to know the SCI level of your husband.

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Dan Gottlieb says:

Hi Trish,

So glad you had a wonderful weekend. So sorry that being cared for was awkward and uncomfortable. Two years ago I wrote a column about my then one-year-old buddy named Jacob. I had the honor of being present when he took his first step. And I watched it as though it was in slow motion. First standing very gingerly, then tentatively reaching back for what was once secure. Then reaching forward, looking uncomfortable, tentative. And then for a moment he was standing right in the middle between what was a knowable past and his yet to be known future. And then the miracle! He took his first step into his future and he has been running ever since!

And so it is with all of us. Those first steps are tentative and uncomfortable. But that doesn't mean they are wrong, it just means they are uncomfortable because they are new

I am sure your friend would wish for you what I wish for you: take a risk and do what is uncomfortable-rest when you are tired, feed yourself when you are hungry and go away for the weekend. Often.

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Dan

Daniel Gottlieb PhD
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5 Posts

Scott says:

Your comments are very open and honest and I appreciate you sharing them. Reading them brings to mind the situation I found myself in earlier this year when my wife and I divorced. I am a C3 Complete who was injured two years ago at the age of 33. I had a very successful career going as a Vice President for a very well known and respected company and had just celebrated my second wedding anniversary when my world was literally shattered. Everyone who knew my wife and I didn't have a doubt in their minds that we would survive this horrible ordeal. We didn't. She chose to leave for the same reasons both you and your friend see in your dreams when you think about what life could have been like. We were also planning on starting a family very soon and even though I could still have children, she felt I would not be able to help her raise them or contribute to a marriage the way able-bodied people do. We still remain friends, but it is extremely difficult for me to also accept everything and not longing for a different life as well.

I write this for three reasons: first, your thoughts and feelings are perfectly normal and you should not be ashamed of them. The sacrifices you have had to make are extraordinary, but it is only human nature to wonder what could have been. You are dealing with something that most people will never be able to understand nor would they ever be able to handle. A mother of another quad I know once told me that she saw her job as a caretaker as her calling from God. I realize, an injured child is much different than an injured spouse, however, I am sure you still realize how remarkable of a woman you are.

Second, I am sure your husband echoes your sentiments and it is just as difficult for him to see you not being able to live out the dreams you both had as well. Unfortunately, the whole situation is a very cruel contradiction. In my case, if I kept my wife at my side I felt selfish for keeping her from chasing her dreams. At the same time, she has to live with her decision everyday and also sees her actions as selfish. I really don't have any great advice to offer new regarding this issue.

Finally, I usually don't respond to people's posts, but for some reason your posting struck a nerve (no pun intended) and I just wanted to reach out to let you know I keep you in all caretakers in my prayers. I wish you and your husband all the best.

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Trish-411 says:

My husband is a C3-C4 ASIA A quad. He also suffered a TBI in the accident that paralyzed him. He has a trach and essentially no movement below the neck. He requires 24/7 skilled care mostly due to the trach and need for suctioning which is required to clear his lungs at any time.

I, in no way, ever want to diminish the suffering my husband has, but I am a caregiver spouse. I am passionate about exposing the often invisible struggles that the caregivers face is this whole equation.

In my struggle, the feelings and stress is not just the care giving. It is the stress of being the sole working member of my family of 4. It’s about the responsibility to provide health insurance for my husband and children. It’s about the physical aspect (and in my case all aspects) of childrearing and household work that rests solely on my shoulders. And yes it is about the struggle of providing intensive, on going care or seeing that care is provided.

I personally don’t believe it was God that called me to this. Life just happens. Free will takes over in some cases and others suffer the consequences. I can’t find any comfort in thinking God wants this for our family.

Here is just an examples of a thought that rolled around in my caregiver brain. As I walked along the beach during my weekend off, I felt the warm sand between my toes and the cool water lapping at my feet. The awesome beauty of the ocean was overwhelming but there was such a wave of sadness. How can I allow myself to enjoy something that my husband can never experience or enjoy again? Do I deserve the joy that he can no longer feel? It’s the feeling of being single and alone but in a marriage.

Dan your words are ringing in my head. I think I must take the risk and step into an uncomfortable area. I’m not saying that I am giving up the caregiver me. I just don’t want to give up the other me forever.

And thank you all for responding to my post. This is how we learn from one another.

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nanaboombala says:

Trish........I sure hope you take Dr. Dan's advice......and visit that uncomfortable area often.......so often it will soon not be so uncomfortable ! I think you desperately need to make peace with the caregiver part of you........and the part of you in which you came in contact on your recent vacation. You're not only allowed to feel the ocean with your feet........you should because you can........having nothing to do with the fact that your husband can't. Do you wish he could ? Well of course you do. Your heart breaks for him because you love him......you feel he's been robbed. But, although you have been too......on your caregiving days.......make sure you give yourself non caregiving days......and use those days to enjoy the things you still can enjoy...........and hopefully you'll get to the point where you will simply feel gratitude that you can do things.......and feel things......to which you are certainly entitiled. I pray that you get there Trish. I wish you many , many blessings.

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Trish-411 says:

I guess that is a part of being the spouse to a quadriplegic that many people fail to consider or even realize. That fact is I do feel guilty enjoying things in life that my husband can’t. I feel guilty and sad going places he can’t or just feeling the simple pleasures he can no longer feel.

Perhaps we deny ourselves to ease our own guilt. But ultimately those rules of self imposed deprivation don’t enhance the relationship with my husband. We usually just both feel like crap about the whole thing.

When I got home from my little vacation, my teenage son presented me with a proposition to take him to Paris next summer. I think he thought my trip was the opening for his big chance. He is so adventurous.

For 9 years we have not taken a summer vacation; me and the kids. My husband could never feel comfortable taking a trip like that. And frankly I couldn’t manage his care away from home.

The last 9 years I have said, how can I? Maybe year 10, I’ll say….why not!

Thanks Norma for your comments.

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nanaboombala says:

You're very welcome Trish.........I do hope you go......go to Paris with your kids........give yourself permission to go......have a wonderful time.......and remember your own words.......self imposed deprivation does not.......does NOT improve or enhance your relationship with your husband ! Period ! So......instead of feeling like crap about the whole thing......plan your trip......go......have fun......make the kind of memories that you'll only gt one chance to make........and start being comfortable with going away.......giving yourself the refueling you need and deserve. I hope you can do it Trish......I really, really do.

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Norma Carroll

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Dan Gottlieb says:

Trish-411 said:

Hi Trish,

I must admit that I had mixed feelings when I read your post about the experience of sand between your toes. As you know, I grew up in Atlantic City and still visit there quite often. Most of the time I find great serenity watching that magnificent body of water change so much and remain perfectly stable at the same time. And sometimes, just for a fleeting moment, I feel a longing to return to the ocean and to feel that sand again. But that longing is so painful that my mind quickly returns to more peaceful sensations.
So reading your e-mail at first caused that pain. But the second emotion was quite different. If I was with you that day, I would have wanted you to go down there for me. I would have wanted you to take me with you and to imagine what that would be like – and do it for my sake. And then I would have wanted you to return and share with me all of the painful and beautiful details.
None of us can ever have what we once had in our lives and trying to change history is always painful. But sometimes seeing a photo or hearing a narrative can be a sad and sweet experience.

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Dan

Daniel Gottlieb PhD
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3 Posts

Shannon says:

Hi Trish,

First of all I personally would like to tell you how wonderful of a person that you are for all that you are doing. Most people in your shoes wouldnt have stuck through will all your obligations. I myself have been a T-10, T-12 para since 2004. I have tried not to have any relationships because I feel that it is not fair for me to ask someone to tie themselves to my disability. If I was your husband I would want you to have all of those feelings. The only way to now what he cant feel or do is to be in the same shape and I cant name one disable person who would wish that on any one! I think that he would want you to still have everything that you can. also he would want you to feel all the things that he cannot feel now.You have alot on your shoulders and enjoy yourself when you can! I would want you to enjoy life to the fullest. I hope that this helps you in some way!

Sincerely crip7429
Shannon Williams

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Trish-411 says:

Hi Shannon,

Your kind words do help. Thanks. Sometimes it is difficult for me to tell what he wants for us. In fact on Saturday, I fixed myself some lunch and sat down at the kitchen table to talk as the nurse was finishing up feeding him his lunch.

His nurse and I began chatting about decorating and how we would remodel our kitchens if money was no object. My husband got so annoyed. Later that evening when his nurse was gone I asked him why he was so pissed at lunch. He told me that she wasn’t giving him his drink fast enough because of my chit chatting.

I really had no response. Things tend to run smoothly when he is the focus of everyone in the house. When the focus shifts, I generally sense his annoyance.

Certainly I am not generalizing about all spouses with SCI; only mentioning what I see in mine. I suspect that his reaction is more than anything due to his TBI rather than his SCI. But still, having an excuse doesn’t change the feelings it causes for me.

I honestly am not sure what he wishes for me or our kids. Maybe that’s what makes me cautious and reluctant when it comes to experiencing some simple pleasure that he can’t.

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Shannon says:

Hi Trish,

Im glad that I could help some. I'm not sure how much the TBI affects your husband, so I cannot give advice in that area. Him getting mad at such a little thing sounds like theres more behind those feelings. If not than it has to have something to do with his TBI or he is just being plain selfish. Now I am only a para and I have much more independence so I cant put myself in your husbands shoes. I can only imagine that kind of lose, but I do know that I am constantly trying to put my family at ease.

I'm not lucky enough to have my own family and a wife who is still by my side. Those are the things that I figure that i'll never have now and I have accepted those feelings. You have more than your share to contend with and if I was your husband then I would want you to have your own time. To enjoy what ever. Without some time to relax and vent then you could burnout and then who would benefit from that? Sometimes it may not be a necessity that irritates your husband, maybe he has become spoiled a bit. I hope that I'm not speaking out of line, but I have witnessed that with some other dependents. I just say that as a possibility.

I can only speak from my personal experience and do not intend to offend anyone. I just believe that you personally have to have a break from time to time. You should still be able to enjoy life as well. Your life should not completely and solely be his every, and only needs. Your life has to have substance and enjoyment. Hopefully this helps and gives some understanding for you Trish!

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Dan Gottlieb says:

hi Trish,

You have had one trial run at developing a new habit. A habit of caring for yourself and being cared for. A habit of resting and reconnecting with your own body/soul. But I use the word habit very literally and that the more you practice, the more habitual the behavior becomes.

You have been practicing the behavior of self-sacrifice and deprivation for nine years and that habit is pretty well ingrained as evidenced by the fact that you didn't know when you were hungry.

Practice Trish. The more you engage in this new behavior of self-care, the easier it will become. Get a weekly massage, take a course in something fun, take an hour a day to sit and just be with yourself. Practice. Practice. Practice

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Dan

Daniel Gottlieb PhD
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Cynthia says:

I see this situation the other way around. I am the one who feels guty.l feel I have ruined my husband's life because I have MS.His life is so much harder because of me. He works full-time, does all of the shopping, cooking, and laundry. AND takes care of me. Bathing, dressing, catheter, bowel program, etc. We have too much money to get help, but too little to afford care providers. Our lives are in such a rut. Although I didn't do anything to get MS, I still feel very guilty.

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Dan Gottlieb says:

Hi Cynthia and welcome to this discussion,

I know that guilt, and I know it very well. When my wife was caring for me, the guilt was almost more painful than the disability. My guilt turned to self-loathing, fear of being abandoned and sometimes anger.

But in hindsight, it was the guilt that created distance between us. I felt guilty about what I was doing to her and she felt guilty because she could do all of the things I no longer could. In hindsight, it wasn't me who was compromising her life, it was the disability that was affecting the whole family's life.

Cynthia, I have a feeling that the underpinnings of your guilt our love and compassion for your husband. So with all due respect, love and compassion is about him but guilt turns your focus back to you. Compassion for your husband is not about pity, remorse or guilt. Compassion is truly understanding his emotions and allowing yourself to feel those emotions. Please ask him what it's like to be him. You might be surprised as he may be suffering less than you think he is. In any event, listen to his story and just feel what he feels. Try not to turn it into guilt or responsibility, just listen to his heart.

Ultimately what all humans want is to be with someone who understands what it's like to be them and then feels compassion, love and acceptance. You can do that for your husband and he can do that for you.

MS does not interfere with love or intimacy, and it can enhance it.

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Dan

Daniel Gottlieb PhD
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