Reeve Foundation Paralysis Community

One day we (me and one of my husband’s long time nurses) were orienting a new nurse.  This was her first day in a home care setting.  She had worked the last 10 years in a radiology office.  She worked all the way through the morning routine including the bowel program.  Everything seemed fine that morning…normal. 

 

The nurses were back in the bedroom cleaning up and my husband and I were in the living room talking when I heard a little commotion at the back door.  I went to check and found both nurses were out of the house on the driveway.  In about 15 minutes, long time nurse came back in, but new nurse was missing.  I was a little surprised and asked what happened to new nurse?  Old nurse said she had to leave.  She was out on the driveway sobbing because she couldn’t believe that people actually lived this way at home.  She never came back and never went to another case.  She quit the agency that day.

 

I didn’t know what to say.  At that moment I felt so different; like another human was repulsed to live the way we had been forced to live with hospital beds, twin beds, wheelchairs, bowel programs, catheters, urine bags, suction machines, ceiling lifts, shower chairs.  Were we really that different?  I wanted to start sobbing too.

 

Dan, you forgot to mention handi-capable.  That’s my favorite. 

 

Eagerly awaiting your book too.

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Trish

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

Trish,
You reminded me of my home health experience. I could sense a nurse's disgust and discomfort with my bowel program from the time they arrived, even though I tried to make light of it as much as possible. There were two nurses who put me at ease and recognized how difficult it was for me to need help with such a private part of myself and only one nurse who had any experience that could help me try to learn how to do my own program.

I appreciated the nurse who actually helped me become more independent and also the nurses who were so repulsed because it made me even more determined to do all that I could to care for myself so I could spare them and myself the discomfort of their presence.

In a nutshell, I'm grateful for all of those nurses for different reasons.

Staring as uncomfortable, makes us feel more alone and different. And feeling alone can foster depression or a festering resentment. But there's one other thing that happens when people keep their distance from us. Well, it's more what doesn't happen.

An article in the New York Times last week by Bennett Cary summarized a good deal of the new research on the impact of touch. Of course we've known about touch since Harlows monkeys in which monkeys fed by an automatic machine didn't live very long, but monkeys who experienced mother's touch thrived.

Some of this research is interesting and shows how human touch increases the production of oxytocin in the brain. This is the "trust" hormone. It gives us a sense of well-being and safety and connection. But it also diminishes the production of cortisol -- the stress hormone.

When we feel alone, lonely, misunderstood and isolated, it increases the stress hormone. So now those with spinal cord injury and their families have a double whammy. People staring at us is the opposite of touch. And for those of us with spinal cord injury, we cannot feel most of our body with us making touch above the sensory level even more important.

I heard a neuroscientist interviewed once who said that chronic loneliness puts one's health in as much risk as cigarettes. The difference is, if you touch someone who's lonely, it is actually a healing gesture on a physical, emotional and spiritual level.

There's a lot written about "skin hunger". But I think touch addresses soul hunger.

I hug almost every one of my patients. They think I'm doing it for them! They also think they are the only ones receiving therapy when they are with me, but please keep my secret.

---

Dan Gottlieb Ph.D.
www.DrDanGottlieb.com
"wisdom of Sam: observations on life from an uncommon child"
trailer:http://www.youtube.com/watch?v=_V4QrekU1Wk

Trish, I have just signed on to this website and your heading caught my attention. I am 54 years old and buried my husband just over two years ago after 33 years of marriage. I know the struggles you go through first hand. 11 months after his death, my 14 year old grandson had a SCI playing hockey for his varsity high school team. Now 16, he is not vented nor trached and has only limited use of his right arm.
Having had to deal with chronic illness and care for so many years before and to only have 11 months where someone was not pushing a wheelchair just didn't seem fair....and it's not. Let me just say no one really has any answers for you, but it is something you must find in yourself. To this day I cry because I miss my husband-despite the years of worry and care. I miss his humor and his advice. He had mental changes prior to his death and in reality I lost him long before his body died. Much like your experience. Anticipatory grief is the worst, at least that is what I believe. Constant grief for what was and never will be again can rob your energy and steal your soul. One piece of advice that I have is to remember to zap all your resources and you might even want to consider long term placement, if that is an option in your state. In Ohio it is. Fortunately, my grandson in home with his aid there 12 hours a day and she takes him to school. He is on the varsity baseball team as record keeper. They found him software to utilize at the games to keep the records. He goes in his uniform. I get nauseated many days knowing this is his predicament and there is nothing I can do, nothing anyone can do. But I/we have hope for the future. Hope in what? That changes on any given day. Hope his aid will show, hope his grades are good (he's on honor roll), hope he gets better, more importantly for me is the hope that he adapts to this robbery and can find happiness. His happiness means more to me than and physical movement can offer. I wish you the best. I don't envy your position one bit. It's tough. No one can really understand unless they have lived it. I can go from angry to sad to accepting in 15 minutes or less on any given day. I do accept the emotions for what they are. Allow them to be and don't fight them but ride them like a storm and then do what needs to be done. So it doesn't have to just be about him having a SCI, but about the loss and grief of what was and the uncertainty of what will be. It's the loss of control that makes us crazy. Control what you can and let God do the rest.
Denise

Denise,
welcome to our community, you have already enriched it with your experience and wisdom.
I had a very powerful experience in this week with a patient I am working with. A woman in her mid-50s who has been in a bad marriage for 25 years. Her husband has been terribly critical and demeaning. Of course she comes to this marriage having grown up with a mother who was the same way, so she is pretty anxious, insecure and highly self-critical. As she ages, she wonders if she will have the courage to leave this marriage. It not only courage, she wonders if she will have the knowledge she needs to pay bills and manage her own living space. Over time her courage has grown, but she is still fearful of the harsh judgment of her now frail mother. She was always passing and compliant with mother and now was afraid mother would be even more critical if she asserted herself.

Her mother is an extremely bitter and unhappy woman. A poet, her bitterness is evident in almost every line. A few months ago, mother gave daughter a poem to read to me. I listened quietly and my patient and I talked about what this poem might mean. In the intervening months, mother's health has deteriorated significantly and she is now near death. My patient brought in another poem from her mother and this time said her mother wanted me to keep it. The poem was about death and mourning rituals.

So after hearing this poem I said to my patient that it is pretty clear your mother wants to tell me something and perhaps mother and I should have a telephone conversation. Daughter agreed but said the conversation to take place within 48 hours as she didn't think mother would make it much longer than that. I called that afternoon.

This frail voice on the other end expressed gratitude that I would take the time to call her. I asked her about her life and she talked about all of the negatives. She told me she was afraid of dying and felt very alone in the world. I said to her that I would be caring for her daughter after she was gone and wondered if she had any guidance for me.

Yes, she said "I always wanted my daughter to do the right thing. I still do. But now I realize the right thing might be to listen to her heart. And if she does, maybe she won't wind up the same way I did."

Deathbed wishes from a dying mother who could not say directly to her daughter. It's heartbreaking that this conversation could have taken place a decade ago or two or three. But what a wonderful parting gift this was.

Anybody who loves us -- truly loves us, would wish the same.

---

Dan Gottlieb Ph.D.
www.DrDanGottlieb.com
"wisdom of Sam: observations on life from an uncommon child"
trailer:http://www.youtube.com/watch?v=_V4QrekU1Wk

Reading the posts makes me feel like I am not alone...although I feel alone everyday. I too am a caregiver of a SCI survivor..my wife. We have been together for nearly 20 years. We have two young children and as of August of last year, we had the perfect life. In a matter of seconds that all changed. As she suffered in critical condition many thoughts raced through my mind...her family was present as was mine. Our best friends were there. When the doctor exclaimed that my wife would never walk again and described her to us as a quad I thought my world collapsed, but I had support. After she was released from the hospital months later reality set in quickly. The support from friends and family went away as fast as the accident came. The mid-day trips for appointments, the early trips to rehab, the bowel "accidents" during whatever time of the day.....all me. It has been 7 months since her accident and we are completely on our own although we are surrounded by family and friends. I cannot blame them for not "helping out" because it seems that nobody accept for the immediate caregiver gets it. I go to work and people say " Is your wife walking yet?" or " Is everything getting back to normal?" I want to explode by their ignorance but it is just a waste of energy. I really think most people, including myself before this accident, thinks that being a para or a quad simply means you cannot walk. Nobody understands the complications with this injury. I am trying to manage a full-time job, being a father of two, and a husband of a quad. It is rough but I am glad it is me because I know it can be done. It sucks do not get me wrong. I miss sitting on my butt on Sunday drinking beer with friends watching football or simply not worrying about what happens in the next 10 minutes. This injury has made me realize who are my friends and has made me a stronger person. I need help to get over anger issues. I yell at my kids over stupid things and it makes me sad. I only wish this did not happen but it does happen.....everyday another person has a SCI. I find myself crying throughout the day but I also find hope. Hope that someday we will find a cure for this and our love ones will once again be independent. Until then it is on us to make things right.

Hi Keith,

 

Welcome to the community.  You definitely are not alone.  I’m many more years down the road from you but have experienced most of what you have expressed.

 

One of the hardest things is something you also noted.  It makes me really sad to realize how this role of caregiver has impacted my role of mom.  I’m busy, distracted, exhausted, working, and trying to meet everyone’s needs and definitely not doing all I wish I was doing for my kids.  Somehow their dad’s needs often push them aside.  I hate that part and it makes me incredibly sad.  It’s a very fine balancing act, and some days I’m a huge failure.  I hope you will keep sharing your experiences with us.

---

Trish

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

Thanks Trish for the welcome. I think the aftermath of my wife's accident has created my lack of connection with my kids. Before my son and I, who is 8, would spend so much time together riding bikes or simply washing the car together on a late Sunday afternoon. My daughter, who is 4, I fear I will never really make a solid connection with her simply because of the rushing around trying to make ends meet. I feel like I am the same person but I know deep inside things have changed. This is what I feel that nobody will ever understand except for people like yourself and the others on the forum. My wife and I spent 8 weeks at the Shepards Institute in Ga. where they teach independence. It was great but now back at home, reality sets back in quickly. I have returned to work and my wife is at home dealing with UTI's, yeast infections and trying to manage on her own. Things are getting better. One day my wife is positive, but the next day she wants it to end.  I hope all of us caregivers can survive this injury like we expect our love ones to do. Thanks again  for your support and I wish the best for you.

Keith,
I can relate to the lack of time to spend with your children. Even as adult children they sometimes want more time than we are able to give them. My daughter got married last year and about 2 months into the preparations, she approached me with the question of whether I really wanted to help with the planning. Of course, I wanted to -- but with the 3 hours of morning work just getting my husband up and ready for the day, needing to be there for each meal and the medication schedule, then reversing the proceedure of getting back to bed at night -- there wasn't alot of time. After a tearful discussion, she understood and helped me with some of my "chores" so that we could get on with wedding plans. Of course, as I told Trish in an earlier post - it just didn't feel special, but I put on a fake smile and everyone tells me it was a beautiful event. There was not a dry eye in the crown during the father(sip & puff chair)/daughter dance.

Keep your chin up and try to keep your children involved in your daily life.

Thanks Dan, that was one of the blessings I did have from my husband was the ability to talk about where we were and where we were both going. One of the struggles I face with my grandson is the inability to talk about his condition. He's been having much shoulder and neck pain which is probably from muscle spasms, but I jokingly tell him "ah that's just the hate coming out" because he is a typical resistant teenager. But that did lead into a more serious conversation with him about the need to talk and grieve this situation. Something we have not really done in the past 18 months. Something I hope to accomplish with him real soon. We'll see. I just keep on hoping.
Denise

Denise, your grandson does need to talk. And talking to people who understand would be enormously helpful for him. But even if not spinal cord injured, counseling could help when he is ready. Please tell me if there's anything I can do.
Dan

---

Dan Gottlieb Ph.D.
www.DrDanGottlieb.com
"wisdom of Sam: observations on life from an uncommon child"
trailer:http://www.youtube.com/watch?v=_V4QrekU1Wk

Keith,
welcome to this forum, I am so glad you have found us. I trust you have explored available resources to have caregivers at home? If not, there are great resources at this website and you can feel free to e-mail me.
I understand that you are concerned about your anger, I am too. But keep in mind that anger is a judicial emotion; a reaction to injustice. So given the theft you have experienced in your life, anger is inevitable. The question is what you do with that anger. I am guessing that you are not even aware of it until you find yourself lashing out inappropriately. So in the ideal world, you would be able to feel the anger has its building and be able to give yourself five minutes to just walk away from whatever you're doing and rest your body/mind.
Of course, you live in a world that's far from ideal. But it is important to keep in mind that as selfless as your life has become, there is still a self in there that is experiencing trauma and needs care. Caregivers, especially good ones, are quite skilled at turning off those emotions and doing what they need to do. And that's a good thing, because we wouldn't want someone with your responsibilities running around the house all day screaming "what about my needs?" So neither extreme works well for you or those you love.
As Trish informs us she barely has time to sleep alone indulge himself care. But what you need -- you and your family -- is very different from going on a camping trip where learning yoga (although they both would be helpful). The kind of care you need is a type of compassion for yourself. Not self-pity, just care. And when you suffer, just feel that you are suffering and let yourself rest for a few minutes.
And like you, I am concerned about the children. My children were five and six years old when I became a quadriplegic 30 years ago and we were very concerned about them in the beginning. My wife was consumed with caring for me and I was unavailable and both of us felt consumed with guilt. That's when we reached out to neighbors, family and friends to help us with our children. It really alleviated our guilt to know that despite what was going on at home, and they were out somewhere having fun.
You feel alone most of the time Keith, and we understand that. But many of the wonderful people on this forum also feel alone -- with you.
In my case, that sense of aloneness is rarely painful, and has been very liberating for me.
I look forward to hearing from you in the future
Dan

---

Dan Gottlieb Ph.D.
www.DrDanGottlieb.com
"wisdom of Sam: observations on life from an uncommon child"
trailer:http://www.youtube.com/watch?v=_V4QrekU1Wk

Amen to that BBS. I am a mother of an 18 year old quad and since his injury, two years ago, we have had ZERO help in our home. No skilled nursing, no respite, zilch. Everyone gives me all these places to call, but somehow, we just fall through the cracks and meet none of the specific criteria. What to do??? What to do???

As caretakers, we should be given complete control of the "allotted" funds that medicaid will pay and then we could hire two or three different caretakers for our loved ones for the $$ we pay these agencies. That way, we could hire people for different shifts to cover virtually morning to night or maybe even night to morning. For $100,000/yr, in this economy, i could hire three people to care for my son at different times of the day as needed.

At this point, I am being told that my son doesn't qualify for any grants that pay for skilled care and as the  caretakers above have noted, respite workers and family members can't fill the bill. Again...what to do? what to do?

Keith,

For some reason, your situation more than any other I've read makes me cry. I guess it is because I can identify with you. I never in a million years dreamed that I would have to be a full time caregiver to my teenage son and then in a split second, our worlds change and so do we. I have learned in these last two years to stop fighting it. Not to stop fighting for my son to get better or a cure, but to stop fighting the "change", the identity crisis, the accidents, the interruptions, the clothes and bed changes.....need I go on?

Every day, I pray for the grace to handle my new role and do it in a way that my son deserves, happily and patiently (not that I always accomplish this..we are only human) and I will pray the same for you as well. God Bless You Keith.

My sister is a c5 complete because of a fall on Labor Day, 2009. At the moment she is very angry and hates me with a passion because 'you can't control me!' And she bites... I think, Trish, that the only way to get through this is to have something to look forward to-for me it may just be an iced latte from the McDonald's drive-through and music I really like in the car. I drive and sip and maybe singalong. Or I sip and cry and cry and cry (use the Macca's napkins). Yes, it's rotten because the regular pay aides or the Medicaid aides aren't skilled so you get to do all of that (in my case, with her screaming and calling me an abuser). Sooo, the other thing I do is try to find some way to laugh every day - The Golden Girls are great (I'm 64). And, no, no one cares that I have moved back here from overseas, my divorce has just been finalised and my knee had to be operated on two weeks ago. (My sister's comment about my knee was -'Well, I guess you had to get attention some way.") Yes, we have organized counselling for her along with everything else and I understand where she's coming from-it's a really rotten thing to happen to you and until she has more therapy and can move some more, she really doesn't have control over anything.
Trish - I find that I really need to talk to someone so I use Skype on my computer to chat with friends here and overseas ( it's free), and I can sometimes organise to meet a friend and we do our grocery shopping together. And people may think I'm strange but I will sometimes greet them with a big hug saying 'It's so good to see you!' and I sneakily get my hugs. and I've learned to never say it can't get any worse because that's the day the aide won't show and my sister decides to scream all night - not in pain -just in general about my appearance, how stupid I am, that her foot is at the end of the bed, she needs another cup of tea, it's my fault.....And then she sleeps all the next day while I have to carry on. Small blessings - my cat adores me and I have completely re-dug and replanted all of my mother's flowerbeds - great for anger management. My prayers for all of us in the situation. Sue