WHAT TO EXPECT: If you are a spouse, partner, or other household member of a person with stomach cancer, you will most likely be the primary caregiver for your loved one.
Stomach cancer treatment is very grueling. It will put you and your loved one to the test. Not everything will go smoothly. There will be a lot to do, and seeing your loved one go through treatment will be emotionally draining. Especially from surgery on, your loved one won’t feel up to dealing with much.
But, all along the way there will be caring, compassionate health care providers to guide you. And family, friends, and neighbors, sometimes the ones you least expect, will be there to provide support and assistance.
WORDS OF ENCOURAGEMENT: This is a time to keep the faith, endure, and do the next thing. Somehow, one day at a time, you and your loved one will make it through treatment and recovery.
You can get through this.
TIPS AND TRICKS:
Take care of yourself: Treatment takes a long time. Recovery takes several more months. You have to be in this for the long haul. Be sure to take the time to eat well, exercise, do something for yourself.
Care coordination: Stomach cancer treatment involves a lot of health care providers.One of the important roles of the caregiver is care coordination: keeping track of appointments, getting prescriptions filled, answering questions posed by health care providers, making sure the right hand knows what the left hand is doing, and all the other details that need to be attended to as part of treatment. At times, particularly in the weeks after surgery, it can seem like a full-time job.
Ideally, you will attend all appointments with your loved one and be at home when home health agency personnel come. It is very helpful to start a notebook or use a mobile device to take notes and keep track of all the important information you’ll get from these providers.
It’s also good to keep a log of things like chemo side effects or what your loved one is eating after surgery. You and the healthcare providers can figure things out better when you can answer questions like, “When did the diarrhea start?”
It you don’t have a healthcare or at least a science background, you may want to involve a friend, neighbor, or relative who does. Perhaps this person can attend some appointments with you and your loved one. At least they could be available to help you understand and sort through information that is foreign to you.
Troubleshooting: As the caregiver you will be troubleshooting everything from mouth sores during chemo, to a possible infection after surgery, to mechanical problems with a feeding tube pump.
This can be a very stressful responsibility. You will need to make judgment calls as to when to call the doctor’s office, clinic, or home health agency for help. And of course we all know that such things tend to come up just after offices have closed on Friday afternoon or in the middle of the night. Fortunately, most providers of cancer treatment have staff on call for such occasions.
Caregiving after surgery: This will be one of the most demanding times for you. Your loved one won’t be able to help with household chores. You will have a lot of hands-on caregiving to do such as take care of the surgery incision site, preparing tube feedings or TPN, and fixing those “many small meals a day.”
The hands-on caregiving can seem intimidating but nurses and others from a home health agency or your doctor’s office will be there to help you know what to do.
Get some help: This is the time to accept help. Take Family Medical Leave, hire a housekeeper, let the neighbors bring in meals (for you if not for your loved one). And carve out a little “normal” time for yourself–go for a walk with a friend, take a break and read a couple of chapters of a good book, enjoy some spicy dish from the grocery store deli after your loved one is in bed. See the web page Support for more ideas.
Don’t burn yourself out now! You’ve still got a ways to go yet.
Caregiving during the next year: After treatment, you are ready to put down the burdens of caregiving and get back to your life. You would like to enjoy mealtime again, go out to eat upon occasion, have friends over for dinner, all those social rituals that revolve around sharing food and mealtime. But that time has not come yet.
There isn’t much care coordination or physical caregiving to do, but your loved one doesn’t feel good, has no energy, is not able to eat very much, and has a lot of side effects from eating. This is hard on your loved one and hard on you.
You may feel very alone. Health care providers don’t need to see you very often and probably won’t be able to help you very much anyway. Your friends and relatives
This is why we started this website. You need to know, it will get better! Please keep repeating this to yourself.
Things will get better.
One day, you will realize that your life has returned to normal.