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A Message From A Care Giver 8 Years And Counting

Posted by Navigator

Hello, my name is Kerensa. I am the sole 24 hour a day caregiver to an ileostomy survivor. My husband, Henry, has been visiting this site for quite a few years. He is often brought to tears learning of the stories shared here; the most prevalent being divorce and loneliness.

I want everyone on this site to know that you are NOT defined by your ostomy. You are NOT unattractive because of your ostomy. You are NOT redefined by your ostomy!

There is a children’s book titled Everyone Poops. Well, that’s true only when they are alive. The book does not describe when and how people or animals poop, just that they do. Well, I for one am thankful that my husband still poops. I am thankful that he is still with me. I am thankful that he is partner in our marriage. My care giving of Henry does not come without personal cost.

The things that I am not thankful for as a caregiver are just as important for me to share as the things that are because they speak to the whole, which in my case has very little to do with Henry’s ostomy or his inability to care for it.

I am NOT thankful that he still blames me for making the decision to eradicate his intestines when he was in a coma. I HATE the hate in his eyes when it is a difficult change out. I HATE that he feels guilty about my supposed sacrifice to keep him alive on a daily basis, trying to keep him positive, holistic gardening and cooking skills to make sure his PH balance will not become too acidic so as not to breach the seal prematurely. Anyway, whether I am reaching ostomy survivors or caregivers, PH is EVERYTHING.

Waking up every two hours to check his output does not bother me, but most of the time, I cannot get back to sleep. This, ironically, bothers him more than me…again with the guilt misappropriated.

It is important to know, as a caregiver, that it is not necessarily YOUR responsibility to upkeep the patient’s self-esteem. However, I believe that it is VERY important that the “patient” does not ‘feel’ any different. One should always pay attention to ones physical abilities, which do change, but it should not define you as a man, a husband, a partner, a women, a wife. If you need help in this regard, please seek it…whether you are the caregiver OR the patient. I only hope that my words give some comfort to both groups. In NO way does this message intend to hurt any feelings, it is only offered as encouragement to a demographic population that is not understood and may not feel that their voice is being heard.

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Comments:
xnine : Thanks for posting.
weirdnewlife : Hello Kerensa, Your posting really disturbed me...especially the part where you say your husband blames you for his ileostomy. I think he may feel that he has to blame someone or something, and you're the closest one. It's totally unfair of him to do that. I'm assuming that you had no choice in your decision and that the doctors told you it was the right, if not the only choice to make. As someone with an ostomy, I think your husband is very lucky to have someone like you. Not all of us do. And unless, I'm missing something, I see no reason why he can't take care of his ileostomy himself. Is there some reason he can't? Are you the only one who can keep track of his output? Most people on here deal with it themselves. Why can't he? Why do you have to wake up every two hours to deal with that? This might sound cold to you, and maybe it is, but I think your husband needs to "man up" a little bit and start taking care of himself. That would certainly alleviate the supposed guilt he feels by making you do it. I may be missing something crucial here, maybe he can't take care of things himself, but as I see it, your husband needs to get on with his life and be happy he still has a life to get on with. He should NOT be blaming you!
Puppyluv56 : Kersensa, My thoughts were exactly the same as Weird New Life as I read your post! None of us would have chosen to have an Ostomy if it had not been a life saving decision, as I am sure yours was as well! There is no guilt to be served on either plate! It seems there is possibly some responsibly distribution that needs attention! I could not imagine my Husband managing my output or changing my pouch! That is a heavy burden to lay on anyone and unless there is more that is not said or implied here, such as his physical inability to care for himself, you may want to address his care with him and his Physicians! If it is a health issue prohibiting him from taking care of himself, I am sorry, and certainly commend your love and caring for your man! Your 8 year sentence is well served! We are your friends here and only mean to help, but if he is able to help himself, maybe there will be less guilt on both side! I, as well as most others on this site lead full, active lives. It only takes a little planning. Would not have it any other way! Puppyluv
mdq58 : I agree with prior notes. Your husband needs to take ownership and responsibility. Am thinking his attitude predates his surgery. Please know that we're all thinking of you and sending good thoughts. Am thinking you should give some thought to seeing/talking with a therapist. With best thoughts and wishes. Mike Q
Bill : Hello Kerensa. Thank you for your post and for sharing your feelings in the way that you have. Like the others who have replied, I am intrigued to know more and was sorely tempted to delay my reply until I became aware of the reasons this situation has come about. However, upon reflection, I have come across many carers who have not necessarily wanted to share their personal relationship problems or their journey to their present position. Nonetheless, I can still empathise with their situation in the form that they wish to portray it, for this is what is the reality for them. I have blogged a couple of rhyming verses about carers on this site in previous years but below is one which has not yet made it to this forum. It expresses how I feel that carers should be supported more in their role. Best wishes Bill WHO CARES FOR THE CARERS. Caring is a selfless task done by one for others. The sort of task that children ask of fathers and of mothers. Caring can be caring ‘for’ of that there is no doubt. But surely it is so much more if carers care ‘about’. Carers deserve a great respect for all the work they do. It shouldn’t be what we would expect of these selfless few. There’s many reasons people care and carers care a lot. In every season they are there so the cared-for’s not forgot. But who cares for the carers when their energy is spent? How many people are there then and how many are absent? When a carer starts to tire desiring a well-earned rest. Many things will then conspire to put them to the test. A carer’s work will take its toll and it’s not for everyone. Who is there to take that roll that no one else has done. What happens to a carer’s need to stop just for a while. Who steps up to do this deed and go the extra mile? B. Withers 2013