Reeve Foundation Paralysis Community

Hi Dr. Gottleib,

 

Thanks for being part of our community.  My husband is a C3-C4 ASIA A quad and also suffered a TBI in the auto accident that paralyzed him.  He has been paralyzed for 6 years now, and we just celebrated our 15^th anniversary last week.  I say celebrated loosely because there was no celebration involved, just the same old trying to survive each day.  We have 2 sons ages 12 and 14.  I think that I will never get over this paralysis thing.  After 6 years you would think I could have mastered my role as caregiver; not so.  Physically I have mastered it, but it is a mental battle each day.

 

One issue du jour is an upcoming wedding.  My husband wants to go.  It is an old friend of his whose son is getting married.  Problem is that I really don’t want to take him.  After 6 years of hauling him here and there I hardly have the energy or desire anymore.  All of these events end up so hard for me.  This wedding is about 70 miles from our house on a Big 10 college campus.  The thought of driving him up there, parking the van, getting him in and out, back in the van to a reception, feeding him, carrying the suction bag due to his trach, and a hundred other things just turns me off.  Events like this are never fun for me because I never attend anything as the wife but always as the “nurse.”  I hate feeling so selfish, but there are many times I would just rather stay home than face all of the obstacles of taking him somewhere.  The other thing about this wedding is that it is on my birthday.  I don’t expect a cake, a gift or even a happy birthday from anyone.  I just want a day where I’m not running around being the nurse.  He can’t go to this wedding unless I take him because there really isn’t anyone else that can or would be willing to do it.  What’s the answer…suck it up like usual and take him to the wedding?  I was so much more enthusiastic in the earlier years, but now these things just seem more of a huge hassle.  Staying home is easier, and maybe I am looking for the easy way out.

 

The guilt of just wanting to be me for a day is overwhelming when I know that my husband really wants me to take him to this wedding.  Balancing his needs and wants with mine is something we struggle with daily.  My heart breaks for him and what this accident has done, but each day I loose more and more of my identity to his paralysis.  Any advice?

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Trish

"Life isn't about waiting for the storm to pass...it's learning to dance in the rain."

It is very difficult to be both spouse and caregiver. Most people find that one or the other of the roles suffers...and most often it is the spouse role. Do you have any resources for attendant care? Having someone else take on at least part of his care would give you a break, and allow you to have more time for yourself and do things without him. This is more healthy in any marriage. For example, it would allow you to either go to the wedding by yourself, or go with him, but with the attendant accompanying him to do any needed care while you relax and visit with friends and family. Private PCA care (not through an agency) is not that expensive. My mother has MS, and my father was her only caregiver for many years. For the last 7 years they have had an attendant who does my mother's AM and bedtime care, and it has taken such a load off my father...he is happier, and less stressed. It is worth the money. Fortunately they can afford the care but my sister and I have offered to help pay for it if needs be as we know how important it is for both their happiness.

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Moderator

Dear Trish,
my heart breaks for your situation. For you and the hundreds of thousands of other caregivers in this country. You are clear and eloquent and suffering. So now what? I'm not going to address the practical issues about respite care, support systems or other social resources that might be available to you. I'm sure you have thought of all of them. So I'll just address the very thing you clearly need need. You need kindness and you need care.

Two of the most significant factors that lead to caretaker burnout are unreasonable demand that can't be met and denial of feelings. Your external demands are overwhelming. Your internal demands make it much worse. You said that after six years you feel you should have "mastered" this business of being a caregiver! Well Trish I have been a quadriplegic for 29 years and I am still working on the mastery thing. And to make matters worse, you feel guilty about the fact that you are exhausted and have needs of your own. So not only do your deepest needs get ignored, you feel guilty for having them!

On a recent interview, I described how my relationship with my body has evolved over the course of my life. Before my accident I ignored it. After my accident I despised it. I was ashamed of the way it looked and I felt rageful that the way it acted. So I didn't take very good care of it. About 10 years after my accident I would tell people that my body acted like a terrorist but I had to treat it like a fragile lover. Over these last 10 years, I love my body. I feel grateful for how hard it has worked over the course of my life just to keep me alive. It has done more for me than most bodies do for their owners. So I feel great compassion, gratitude and love for my body.

And yours? It's not just your body, it is your heart soul and mind that have been taxed relentlessly over the course of six years. Your body has maintained its stamina, you have developed effective coping skills, at the deepest levels you are acting out of compassion and love. And you are human. You are tired and you are angry and you need care. So why not start with you?

You certainly cannot ignore your husband's needs. But please allow yourself to feel what you feel whether it is exhaustion or anger or relief or even the joy of your children's existence. Please just notice what is happening in your life and allow yourself to feel at all. And when you feel exhaustion or despair, try to feel the same kind of compassion for yourself that I felt for you when I read your letter. I'm not talking about self-pity, I'm talking about simple kindness -- the same you would show for me if I was suffering.

You can love yourself without being selfish. You can care for your suffering without ignoring his. Your identity is not lost simply evolving. Open up your heart and let yourself be kind to you. You won't be able to do it all day and there will be many days you will forget. But the more you practice this open hearted kindness for the person you are, the better you will become at doing it.

As a matter of fact, I am feeling that open hearted kindness for the person you are right now.

I wish you the best and I wish you a happy birthday at home taking a warm bath and relaxing.

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Daniel Gottlieb Ph.D.
www.DrDanGottlieb.com

Dr. Gottlieb,

 

Thank you for your kind words.  I will say that your response surprised me.  For the record I do have nursing care for my husband; mostly while I work but I’ll say that my husband is total care so even having help for 40-50 hours a week still leaves me with 110+ to cover.  Plus having home health care isn’t the panacea that many seem to think it is.  Yes, I couldn’t do without it, but someone in your home presents a whole host of problems unto itself.  But I’ll save that for another topic sometime later.

 

I guess my follow up is that I think it is extremely difficult for caregivers to feel what they feel.  Society in general is not accepting of the feelings that caregivers often express.  I guess that is why your response surprised me.  I have learned that these feelings must be held in secret because if you actually voice them, most people think you are some sort of uncaring monster.  This point was brought home to me this week in a very strong way.

 

Another spouse of a quad pointed me to some writings by Marion Cohen who was a well spouse for many years to her husband with MS.  I read an unpublished “book” on her website that was called Cruel and Unusual.  It was blunt, harsh, and an uncensored expression of her deepest feelings of her caregiver role.  I too have felt the things she wrote about.   Although I don’t feel I am yet in the dire straits she speaks of, I totally get it. 

 

In this book she talks a lot about a published book she has written, Dirty Details.  Out of curiosity I checked Amazon for the book.  The part that upset me was the reader’s reviews section.  Here is the one that got to me.

 

“It is evident that writing this book was probably quite cathartic for M.D. Cohen. It is a vivid portrait of narcissism and self-absorption of a rather high degree. Pity for Ms. Cohen's negativity and aspirations to martyrdom emerge early in the reading of this book. It is also difficult to imagine how Mr. Cohen was able to endure the rampant emotional DIS-ability of his alleged "well spouse". I was gratified to learn that he was finally released from her "care" and concomitant anger and negativity. If anything, this book shows who the "well spouse" REALLY is. And the author is NOT the well-spouse. Not in the least. I wish Mr. Cohen and his children well. And perhaps, by now, M.D. Cohen has been healed of her emotional illness. One can hope.”

 

Wow, I have a feeling that the majority of people feel exactly this same way.  Somehow as a caregiver it is easier to hide your feelings, develop elaborate coping strategies, and somehow try to suffer in silence.  Maybe this won’t work for the long haul, but right now it seems the only viable option.

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Trish

"Life isn't about waiting for the storm to pass...it's learning to dance in the rain."

Dear Trish,

nice to "see" you again! This business of caregiving and the emotions therein is a complicated one. Before my accident, I was a caregiver for my spouse for about a year when she had cancer and went through chemotherapy, and although my caregiving job was temporary and much less involved than yours, I still had very powerful and frightening emotions. I would suggest that the difficulty for caregivers and feeling their emotions is not about society as much as the size of the emotions! I couldn't allow myself to feel all of the anger and despair I felt inside. I couldn't allow myself to tolerate thoughts of running 1,000,000 miles away from this marriage. It wasn't society that stopped me, it was my fear that if I felt these emotions I might have to act on them. Untrue.

Of course that doesn't make them any more painful, but knowing you have them and knowing most caregivers have them, can't help you feel less alone and less overwhelmed with your emotions.

And that reader who posted a reaction to "dirty details" on Amazon? It's pretty clear that he (I assume it's a he because of the aggressive rage) has his own story. Anybody who rails up against someone else's emotions is doing so because they've had a button get pushed. Trust me, his reaction is about him and has nothing to do with the author, the book or anything else but his psychology.

As a Buddhist teacher once said: "love what you love, hate what you hate, and your life will unfold before you moment by moment."

Take care Trish

Dan

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Daniel Gottlieb Ph.D.
www.DrDanGottlieb.com

Hi I am a caregiver for my husband quad due to an accident over 3 years ago. I also read that and can really relate. Noone except caregivers can understand what we go through. I have tried to tell my husband's family how it is and how I feel and they just either pat me on the back and say I am doing a great job and then leave or else remind me what a great home and life I have and then leave.

Hugs, Katie

Katie,

 

I have had the same issue with my husband’s family.  They don’t want to get too involved or know too much about the struggles he really faces on a daily basis.  I don’t know if you call this denial, but it’s almost like they think he showers himself, brushes his own teeth, shaves, gets dressed and then sits down in his chair for the rest of the day.  They will visit and stop by if he is up and “fixed up”, but they don’t want to know or see how he got that way.  It must be very painful for parents to see even their grown child like this.  Maybe denial is easier.  They will run errands for us and stuff like that if needed, so I just accept what help they can give.

 

I have even asked his siblings for help when I have been rather desperate.  Often the response is that they “just don’t feel comfortable with his personal care.”  Well…. NEWS FLASH…neither do I at times, but sometimes circumstances require you to do things that maybe you aren’t comfortable with.  I sometimes wonder if something happened to me, even like a minor thing where I had to be in the hospital for a few days, what would they do?  I bet they would put him in a nursing home quicker than anything if I was unable to care for him.  Maybe I’m wrong about that, but that thought is always in the back of my mind.

 

Thanks for your comments.

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Trish

"Life isn't about waiting for the storm to pass...it's learning to dance in the rain."