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I didn't sign up for this

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"I didn't sign up for this."

 

This is the exact phrase that ran through my mind at one point right after Patrick's stroke. It only ran through for a moment, and I immediately pushed it aside, ashamed I'd even thought it. But it was a real thought all my own, no one else to blame. I thought it.

 

It is very hard to explain to someone else how such a thought can even cross your mind. I tried to explain to a friend at work who had told me he admired how I was handling everything that had been given to me.

 

I tried to tell him that some things are easy to do when you love someone. I told him Patrick and I have always truly been best friends. I always felt that we have a love that many married people don't seem to experience. I knew this friend had the same love for his wife that I share with my husband.

 

I told him about the rollercoaster of emotions I had been on through this, and about thinking the thought of "I didn't sign up for this". I needed to admit it to someone else. I told him I would never have believed I would think that thought if you had told me before his stroke that I would.

 

Deep down, if all I were told by doctors had come true, would it have been so easy to step up?

 

I had a son half-way to his 14th birthday who has such difficulty in school- keeping him on task and passing is a full time job itself, not to mention he's a teenager who likes to challange us. I work at a job 50 hrs a week, and in order to keep the insurance, I gotta keep going. No choice in working/not working here. I was already the major financial support of the household. I am only 1/3 of the way through my work life to retiring. And worse thought yet, I am (theoretically) halfway through my life. Am I ready to spend the rest of his natural life not having any sort of intimate relationship with a man? I am not JUST speaking of sex. I mean the intamacies of sharing a life with a partner who can enjoy it with me?

 

There was no way I could stay home and be a 24/7 caregiver, which is what I was origanally told he would need. He would need someone to feed him, bathe him, change him, and basically take care of every need he had. He would have the abilities of a six month child with his only speech being grunts or maybe a word like "yes" or "ok".

 

People assume they will face this sort of thing in their later years of life. I had always thought, "I will never let my husband go to a nursing home if I am okay myself. I will take care of him." Somehow in my mind I assumed, "I'll be retired, I'll spend all of my time doing the best I can for him because he deserves it."

 

Well, does he not deserve my help any less because we are NOT retired and we are NOT elderly now when he needs it? He absolutly DOES deserve it.

 

The guilt over even thinking I couldn't handle all this sometimes makes me think he deserves a better wife than the one he chose.

 

That little phrase expressed so much justifiable fear in the split second of it's exsistance. Seven syllables created so much guilt. A fear so deep of not trusting in yourself that you will have the ability to do all that is needed of you. Being so overwhelmed and panicked by reality that you want to run and hide or squeeze your eyes tight and chant, "La La La, I can't hear you, La La La...".

 

I always knew I wasn't going anywhere. But I am here to say the thought of not being able to handle everything given to you can cross the mind of even the most devoted spouse.

 

Kristen

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HostAsha

Kristen:

 

wonderful blog from caregiver point of view. but as a survivor point of view who is maybe same age as you guys. I also did not sign up for this, for caregivers you have opportunity to runaway from this stroke, but do we survivor has any opportunity ro run away from it. I can just sit and count my losses, but at the same token I realise by looking back and counting my losses is not going to help anyone including myself, I have to march on this road we call it life picking up my pieces.maybe I should write blog about this

 

Asha

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givincare

For a person who SO LOVES the person they married, there is no opportunity to run either. It is more like a feeling of wishing you could run but knowing that you won't because the devotion you feel to the person is not contingent on the person's health. I would not, will not, ever leave or turn away. Not out of guilt and not out of committment. I stay because I don't want to live my life without him. BECAUSE I LOVE HIM. 'Nuff said.

 

I truly believe that a person who leaves their spouse after a stroke would also leave if their was some other major crisis that can't be fixed. Some marriages never face that crisis and so the answer is never know if it would survive in the face of one.

 

I often hear that at least caregivers can leave if they choose. This statement is a double edged sword of " at least you can leave. You have the option." but also..."if you leave, then you're a jerk." But if a survivor could leave their stroke, wouldn't they? I personally think both caregivers and survivors have no choice in what they are dealt, and a real caregiver does not have the option to leave either.

 

Kristen

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HostAsha

Kristen:

well said. I agree with you completely, my husband is sticking by me and he is the type who never says he loves me, sometime I wonder what is his reason for sticking by me. I guess I m plain lucky to marry gemstone

 

Asha

 

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bstockman

Kristen, when I was 29 my (former) husband had to go on a dialysis machine. The closest dialysis center at that time (1978) was in Seattle, 2 hours away. So they decided to train me to run a home dialysis unit..

 

I clearly remember the first day I walked in for the beginning of training, I looked at all the equipment, tubes, machines, syringes, medications,etc, etc. The nurse started his "run" once he was on and going, I had to excuse myself. My first thought was to go running and screaming from the hospital.........oh, my God I am going to be responsible to run all this equipment and to not kill him doing it. I am not ready for this. After going to get a cup of coffee in the cafeteria, and a prayer, internal pep talk, and more than a few deep breaths I was able to calmly go back and settle into learning ....

Yes I also felt guilty for wanting to run away, but then the "unknown" and changes can be frightening. But I stayed and ran a dialysis unit at home 3 days a week, worked 4 days a week, had a 12 yr old and managed to get through it all. He passed away from complications about 18 months later.....

 

We never know what hand we will be dealt in life..we just do the best we can, and pray for the strength to get through it.

I still to this day repeat my father's words to myself..

"No matter how bad things are for you, you can look around and there is ALWAYS someone having things worse." (Bill Baker)

 

pash.gif Bonnie

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givincare

Bonnie,

I know you understand both sides of the coin here, and that is part of what makes you a special person with a gift to connect with others.

 

Thanks Bonnie, you're one of the best.

 

Asha- Jean is right. It's obvious that he loves you. Thanks for your feedback.

Kristen

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kkholt

Hi Kristin,

 

I enjoyed your blog. As a committed caregiver myself - it really hits home and speaks to me. I noticed a lot in common with you in relation to your work, teenager, and committment to your family.

 

Thoughts go through my head - just like you, that flee through fast. I have no guilt for those thoughts, and just consider them as a part of my emotional adjustment.

 

"I didn't sign up for this" thought might breeze through my head and bring a few minutes of anger. Sometimes this is just the thought I need that gives me the spurt of energy to roll up my sleeves and continue the hard work ahead.

 

I saw in your blog a very big-hearted caring person. I applaud you!

 

-Karen

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