How to deal with constant stress and worry as caregiver?

I went through radiation and chemo about this time last year. I had a cancer in the back of my tongue that had also spread to a lymph node. Because of the location of the lymph node the recommended no surgery. That said after 7 weeks of radiation and chemo, I was in severe pain, could barely swallow, and wondered the same things. Will never get well. I am just a year out, and I did recover. I am 40 lbs lighter.
Now for the worry part. I read Psalm 138 and it gave me power that was not my own. I studied every word of it and discovered that God truly does bring to perfection all that concerns us. Believe His word that He exalts above His name. You will find peace and joy, the opposite of anxiety.

I have been living for 12 years with metastatic SCC head and neck cancer. My husband has dealt with bladder cancer for 4 years. I believe it is much harder to be the caregiver than the patient. All the worries and you cannot take away their pain and suffering. We are not there as caregivers to fix their medical issues. We are doing our best to provide physical and mental support during a terribly stressful time. You must tell yourself every day that you cannot fix this. And that you are doing your best to care for him. Help him make short term goals. Applaud every little improvement. Remind him that for every 2 steps forward there may be 1 step back. Support yourself. Allow others to help. Reach out for someone to spend an hour with him while you do what you need for you. Spend time in nature. Have strength and courage. If you use the internet follow SPOHNC, a nationwide support group for head and neck cancer. Just be there. You can’t fix it. You can only do your best to support him. You are strong enough. We do survive these horrendous treatments but it takes time to heal and the older we are, the slower it is. New advances in medicine are happening all the time to help to prolong our lives.

I agree. You make excellent points. Sometimes it's hard to encourage him to do his PT or ST but we have to try. That's all we can do. Keep being supportive and positive. I have to keep telling myself I didn't cause this and can't fix it. Thank you.

Many or I probably could say most patients go on a feeding tube during the most difficult time during head and neck radiation. I was like your husband and extremely worried if I went on a feeding tube I may never get back off. As I understand now the feeding tube makes your life much more easier during treatment and then you can gradually wing off of it. I FORCED myself to eat and trust me it was difficult. I did manage to stay off the feeding tube but looking back I probably should have just gone on it for a few months. I did lose about 90% of my ability to swallow, I had No taste at all , and my salvia production was about zero. . l would suggest He start doing mouth, Neck, tongue and swallowing exercises prior to Radiation. This will help him in the future as He begins to wing off his feeding tube. If you have a Speech therapist they can help you with this. Ok the good news. It is highly likely He WILL be able to get off the feeding tube in the future. He WILL be able to eat and taste some of his favorite foods. I finished TORS 12 months ago and Radiation 9 months ago. Today I can eat and drink about anything I want. My taste buds are about 80% and My throat mucositis has almost gone away. Saliva production is about 80% as well. There is light at the end of the tunnel. Hang in there. Walk with God and He will show you the way. Faith is a very powerful thing. Wishing you guys well!

Thank you! He had TORS surgery Jan 25 and has been unable to swallow since. His neurologist thinks there is nerve damage. I don't kniw.
He's been doing the swallowing exercises for 3 months with very little progress. As we enter the next phase of chemo and radiation (they did not get it all as we found in a catscan 3 weeks ago when he ended up in the ER with aspiration pneumonia) I expect he will make no progress because of the soreness. It is just so disheartening gor both of us but comments from folks like you give me hope! Thank you!!

I would say I'm not much help with the medical part of things but since my diagnosis in January of this year, my wife and I have received a good dose of stress, anxiety, and depression. The first thing I would say is that the caregivers suffer too. In the beginning my wife thought she had to be tough 100% of the time and boy did that go bad. We learned that we needed to be completely open with one another about our feelings (I took the oath too...sickness and health). The other thing we did was learn to give ourselves grace. This is possibly the hardest time in one's life. There will be bad moments and that's ok. Never think that your feelings are invalid. We decided we had to get busy after spending some time in the darkness. Physical activity, sauna, acupuncture, prayer, meditation, and nature just to name a few. Slowly, very slowly, we are coming out of that dark place and you will too. It's just a matter of time. I don't want to get religious but I have faith in our God and Creator. What he has in His plan is perfect and I fully submit to that. He is teaching me every day that HE is in control and I'm still very stubborn about that lol. I'm going to pray for you and your husband right now. It's OK to go through the valley of darkness but we don't have to stay there forever.

Hang on to your hat. Hang on to your hope. And wind the clock, for tomorrow is another day. - E.B. White

All of these answers are very helpful. Nature and exercise, even a slow walk, friends, have all helped me. But the biggest help is my faith in God. No matter what happens I am not alone. He promises to never leave us or forsake us. I’m praying that you will find the peace that surpasses all understanding and that you will feel his presence as you walk through this difficult time. Recovery takes time. Don’t give up. Look for small changes.

@phyllisg, the stress, worry and fear of the caregiver often goes unaddressed. Let me first start with giving you some links to related discussions with respect to the feeding tube and the patient's depression
- Anyone Caring For Someone who Uses A Feeding Tube?
https://connect.mayoclinic.org/discussion/anyone-caring-for-a-feeding-tube-patient/
- Feeding tube patients: What's your experience?
https://connect.mayoclinic.org/discussion/feeding-tube-patients/
- Husband fighting neck cancer, depressed and gloomy
https://connect.mayoclinic.org/discussion/husband-fighting-neck-cancer-depressed-and-gloomy/
- Depression and anxiety, and Head & Neck Cancer
https://connect.mayoclinic.org/discussion/depression-and-anxiety-1/

Now back to you, Phyllis.

Caring for someone who has cancer is hard and there's no instruction manual. Much or all of the medical focus is on the patient and it can be isolating being the caregiver. I'm glad that you are reaching here and there are plenty of members here who will journey along side you - at least virtually.

I'm sure the caregiving has become a full time occupation and pre-occupation. I want you to know there are also supports available for you. Here are a few suggestions:
1. Continue to post here. You may also wish to join the discussions in the Caregivers support group here: https://connect.mayoclinic.org/group/caregivers/
2. There are also weekly Zoom meetings (Thursdays) available for caregivers. See the descriptions and time details here:
- Cancer and Transplant Caregiver Support Group Meeting https://connect.mayoclinic.org/event/cancer-and-transplant-caregiver-support-group-26-8137/
- Caring for the Caregiver Support Group Meeting https://connect.mayoclinic.org/event/caregiver-support-group-meeting-1-8184/
3. Talk with a cancer support worker at your husband's cancer center. They are available for you and your concerns too.

That's a lot of things to click and explore. Phyllis, how are you doing today?