NEED HELP & ADVICE...PLEASE!

[NewEnglandAutumn]

55. I'm so sorry but hope this helps

When we learned my husband had cancer he was in serious denial mode and I was numb. I made promises to a god I don't even believe in and wanted him to stay with me no matter the cost. Most of what I share is more practical but the emotional/spiritual will follow.

Personal hygiene is important because it is so important to self esteem. The colostomy can be a problem the bags can come off and the glue/tape can be very irritating to the skin. The ostomy bags and various options to secure them are tricky because what works for one person does not work for another. My daughter really liked the stoma powder available when she had her colostomy. The trick was not using too much or too little. We also learned that when we changed her bag it helped to stay still for a few minutes to let it 'set'.

Control. I try to make sure he feels in control as much as he needs and I am in control of the things he needs to ignore. ie when we go to an er he checks out mentally so he can feel in control of himself and I go through history, meds, what brought us in etc and advocate foe the things I know he needs at that moment. I'm sure you will figure this out but being aware of how important control is will help you find the balance that works for you.

For vomiting we started buying the emesis bags that are available in hospitals it makes the whole process less messy and the knowledge we always have a few gives him piece of mind. If possible a good mouth rinse also helps.

I also buy packs of foam wash cloths infused with a gentle soap. I know its not good for the environment but the foam is abrasive enough to make you feel clean and gentle enough to not damage fragile skin.

While nutrition is important, sometimes calories trumps nutrition. Shakes,ice cream, favorite foods anything that appeals is always on the menu. When he is losing weight I get those Ensure or Boost beverages and always hand him one to sip on through the day.

Ondansetron has been great for nausea and especially the OTD ones because they dissolve so they don't get thrown up so easily. He was also prescribed Lorazapam (Ativan) for nausea sometimes it seems one works better than the other. Lorazapam is available in a liquid form which has helped.

Pain management is a problem. It is not that it can not be achieved, it is just so personal. We use fentynal patches to keep his pain at bay then use other meds to handle his breakthrough pain. The trouble with patches is they can peel off so we put tegaderm over them and alway write the date on them so we don't forget to change them.

Your relationship will dictate how to cope with each other. There are times we packeting it away and ignore it times we discuss at length feelings, ground rules (when to stop, when to push etc). We hold hands and just spend time near each other each on our own laptop just 'being'.

He has made much longer than doctor's wildest expectations and they have not idea why but I have been living with his slow decline for years. It is hard. REALLY hard. The thing is the reason why it is hard is because I love him like crazy and it will always be 'too soon' no matter how long we have. I feel time catching up and it scares the crap out of me. All I can do is make him as comfortable as I can, let him feel he is loved and hold his hand.