Suggestions for Carers (Things I found helpful from my partner)

by on Saturday, January 10, 2009 17:58
This entry is filed under: Coping/Support

A commenter recently asked about how to take care of a loved one who has UC. This has come up before and I have tried to assemble a list of things I found helpful from my partner. Please add any other suggestions in the comments (I’d love to hear what others have to say).

1. Help with food. I found the diet after surgery to be extremely restrictive. Since I generally ate very well prior to surgery, meaning lots of whole grains, fruits and vegetables, I found it very difficult to stick to the low-residue diet I was prescribed. In addition, I was told to consume as much protein as possible, not what someone who isn’t a big fan of meat wants to hear. My partner spent a lot of time planning meals and snacks, grocery shopping, and cooking, which made a huge difference.

2. Letting people know about my “situation” in advance. I found it important to prep people before we went to someone’s house or out to some social activity for a couple of reasons. I looked very sick initially, and a little warning saved all the awful “What happened to you?!” reactions that just reminded and reinforced how sick I looked. In addition, if we were going to someone’s house to eat (particularly if it was for more than one meal, such as staying for a weekend), prepping about the diet requirements was important. I disliked telling people about my complicated requirements, but it was easier for someone else to do it for me.

3. Setting up a reward system for bad UC/Ileostomy days. Problems with the ileostomy leaking (the adhesive coming of and the wafer losing it’s seal) is incredible frustrating and I had it happen to me quite a few times. It happens less now, although it still happens occasionally. My partner was always great about comforting me afterwards. We are both very busy, but when that happens (after I take a shower and get everything in order) we watch TV together and take the night off from work and chores. It has come to be a reward that balances out the awfulness of a blow-out.

4. Patient reassurance. Many times I have felt extremely overwhelmed by the situation and my partner has always been willing to patiently reassure me that things will get better and I can handle whatever comes my way. This is also true for how I feel about how I look, which has also been a huge deal for me (though truly I think the hair bothers me more than the ileostomy).

5. Entertainment. In those long, long days of recovery, my partner put lots of time into finding me things to occupy my time, such as books to read and TV and movies to watch. It made the recovery period so much better.

These posts might also help out:

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5 Responses to “Suggestions for Carers (Things I found helpful from my partner)”

  1. avatar

    Megan says:

    January 10th, 2009 at 8:55 pm

    From my perspective as the carer what I learned with Mark was how important it was for me to be involved in all of it. Meaning, he didn’t want to ask, but he wanted me to go to doctors appointments, or make that phone call for him, or deal with insurance problem for him. It was important that I do what I could to take some of the stress of recovery, the disease or everyday life away for him. Although, this had implications on me at times b/c I would be so worn out – I eventually learned how to find the balance of caring for him but always caring for myself as well. I learned I wasn’t any good to him if I became so exhausted or consumed in his situation that I let myself go.

    Megan

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  2. avatar

    Jenelle says:

    January 11th, 2009 at 7:09 pm

    Megan, I think that’s a great point. It is always appreciated to have someone to share the difficulties but it is sometimes difficult to ask since no one wants to feel like a burden.

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  3. avatar

    Eric says:

    January 11th, 2009 at 10:24 pm

    These are great suggestions. Something I remember was not having the attention span for anything “heavy” or “deep” in terms of reading or movie watching. I wonder what books / movies people were still able to get through when very very sick. That would be an interesting list in itself.

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  4. avatar

    Erica says:

    January 12th, 2009 at 5:00 am

    The website should get a list running on what movies and such that people enjoy that make them feel good when they are feeling down – I always watch the film Chocolat and that makes me feel better no matter what.

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  5. avatar

    Eric says:

    January 12th, 2009 at 7:59 am

    When I was in the throes of a terrible flare, I remember people reading to me. I also remember watching The Four Feathers, a somewhat cheesy movie. But at least I was able to enjoy something. I think the list idea is a great one.

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