Caring for the Caregiver Support Group (Florida)

My husband was diagnosed with pancreatic cancer in March and had the Whipple procedure. He was stage one, has had numerous problems with sepsis , weight loss and exhaustion. Chemo began in September and he has finished the first round. I am his sole caregiver at home. He is uncommunicative but cooperative although he does very little except sleeping and Watching television. He occasionally agrees to do something outside the house but usually isn’t able to go when the time comes. I am trying to maintain some social normalcy but he gets upset when I mention going to family holidays, trips in the future or anything else beyond today. I understand living in the moment but if the moment is miserable it seems that considering happiness in the future would be an incentive. To be honest, I feel stuck. Bc his cancer is so unpredictable it’s hard to believe that this is what the rest of our lives will look like. We are seeing a counselor but the sessions are repetitive and not too helpful. If anyone has suggestions or experience with similar feelings I would love your input. If not, thank you for the opportunity to rant!

Hi there- I randomly read comments and happened to see yours❤️ I know the frustration you must be feeling. Im relieved your husbands cancer was caught so early in the pancreas!!! That’s amazing. Does your husband have any other issues? He doesn’t communicate and sleeps mostly and/or watches tv? Doesn’t like heating of any future plans or outings etc… does he have emotional health issues as well? Line depression or anxiety?

Thank you for responding. My husband has never been a good communicator but I think at this time he is depressed and less likely to look toward the future. We have discussed this with our palliative care Dr and both medical weed and an antidepressant have been prescribed. We are in month 6 of this journey and have finished the first round of 16 treatments of chemo. My fear is that the depression is causing him to withdraw to the extent that his quality of life is worse tgan it needs to be. He has no pain, just exhaustion. He has always been very active.
I’m just not sure how to proceed from here.

@baeph and all...My heart goes out to you and your husband. I'm so sorry you're having to deal with all these overwhelming emotions and physical issues as well. I cared for and oversaw my mother's care during 12 very long years with Alzheimer's. I'm now the caretaker/helper for my 53-year-old son with Dystonia, a movement disorder affecting his entire body and with acute and chronic pain. Very rare and difficult to diagnose and treat.

I hear in your message your husband is dealing with cancer on a moment-to-moment basis, daily is as long as he can handle. I suspect he isn't capable of at this time thinking he has a tomorrow, so will not go there in discussions or his mind. I understand that from my own experience and personal illnesses. It's a step in the right direction heading to acceptance of the diagnosis. I found it took me time to go through this part of the process. Then, as the treatments began to help, to ease discomfort, as I dealt internally with the facts and new life, I began to see a day ahead. I believe it has a lot to do with the issues of hope, and disappointment due to total loss of hope. We can't go forward in our thinking or lives if we have no hope for having a life. Perhaps he's still in that place.

I believe if that's correct it requires your understanding and patience, one of the toughest things we caregivers are asked to do. Be patient. Yuck! Hate that. It's so difficult to do in my life, much less in dealing with my ill loved one. But, he needs this time to develop his thoughts and see a light on the horizon. We tend to push forward with making things happen. He needs to sit quietly and allow his thoughts, his inner self to catch up to this thing that has hold of him. If you can accept this, you will find more peace, less frustration, and more hope for your life as well.

I'm a caregiver, a mother, a daughter, a person who wants to fix things. Some things I can't fix. Same with you. We must accept there are some things we can not fix. I've been in fight mode for so many years it's affecting my body tremendously with illness, and breakdowns of systems, so much damage is caused by this fighting for my loved ones. At this point, I have just gone through an enormously horrid weekend with my son and am now accepting the fact...the FACT... I can't fix this. I can't fix him. I can't do anything further to help. I must step out of the way and allow him to go through whatever is happening in his way. On his own. Tough. Not in my nature, but required of me as his mother and caregiver.

This is my acceptance journey. Also tough. Never-ending, either. We accept eventually and then can move on into our own next steps, our own lives. I'm getting ready right now to go to the mall and shop with my one friend still standing, and have lunch. First time I've done this in several years...about 10??? Wow, not good for me! So, I'm pulling up my big girl slacks and moving forward, leaving my son to deal with his issues for the moment.

Now, I have no idea if this is the way you must travel. I know it's my way and has been a terribly long and difficult journey getting to this place. I will survive and live. I will help my son. But, I must honor his wishes and allow him to deal with his personal hell in his way. You are getting help it seems, so let the help sink into you both. That's my suggestion. Not advice. Just my personal suggestion.

I'm thinking of you both. Be blessed. elizabeth

I can’t begin to tell you how much your words have meant to me and how accurate your understanding of my situation is. Like you, I want to get him well and move forward. I guess forward for us remains to be seen. But your description of your journey gives me a benchmark of some sort. I meditate daily and this gives me something to think about.
I’m very fortunate in having support from a wonderful group of friends so I can get away almost daily for a while. I hope your lunch with a friend gave you some respite and a feeling of normalcy.
Thank you for taking the time to help me. I have to calm myself down and find a way to accept the things I can’t change (and the wisdom to know what they are). I hope your positive attitude and kindness bring you good things-you deserve them. Barbara

@baeph and others...I'm so pleased you got some help from my message. That warms my heart. You see, when I began the caregiver journey with my mother and even with my son 2 decades ago, I had no idea what was happening, what I should or needed to do, how to let her walk at her own pace and how to give myself care. I learned quite slowly and with much pain. If I can help relieve you from some of that pain, I'm thrilled! If I can help you have some peace and guide your husband through his walk, perhaps I am doing what the Lord put me here to do. I pray that's true and that I can help in some way.

I had a lovely outing yesterday. Stopped by and picked up my son's contact lens. Delivered them to him when I got home not knowing what to expect when I saw him. He hasn't changed his demeanor, nor his anger, but it isn't directed at me at this point. So, I stayed quietly and softly and gently helping him clear up some books and files on the floor, broken glass, etc. I'm heading there now to do more as he can tolerate the help and my presence. I know now this is the new normal for us and I'm accepting that there won't be improved unless the medical folks help him or he leaves this earth. I have no power to cause improvement. I've done everything possible and must stop that fight. I'm calmer, much more at peace, and focused on today and what I can do to help him live as long as he does.

Same with improving my life. I'm focused on actually accomplishing reachable goals for us both. It really feels good.

Be well. Be blessed. elizabeth

@baeph
You wrote:
Bc his cancer is so unpredictable it’s hard to believe that this is what the rest of our lives will look like.

I was the sole caregiver for my wife from the time of her pancan diagnosis in July 2019 to the time of her passing September 14, 2022. My wife had no family and my family all live in other states. As we left the hospital after her distal pancreatectomy in March of 2020, the country went into COVID lockdown. Due to her immune compromised status and all the unknowns of COVID, my wife would only leave the house for medical appointments. She wouldn't allow friends to visit; she wouldn't even do zoom calls because she was afraid that well-meaning people would say upsetting things. My wife was normally the happiest, outgoing and giving person you'd ever meet. We were both convinced that she would get well and we'd resume the wonderful lives we had for 42 years together. Together, we decided to maintain hope by never believing that failure to be cured was inevitable. Ultimately, everything that I did to make my wife's path comport with her desires made my path harder after her passing. It's very difficult to suddenly change from being ever hopeful to be faced with losing the love of my life. But she knew that she was cherished and loved to the very last. Every patient and every caregiver is different. I tried my best. Maybe there were better ways, maybe there would have been better outcomes but our hopes gave us strength.

@baep you'll never know everything that's going through his head even if he starts communicating. The only advice I can give, is if you learn his desire, do what you can so he can work towards it. You don't have to like it, you don't have to agree with it, you just have to accept it.

Is there a group like this in Indiana? We are desperate here for one.

I am also a supporter for my sister in law/bests friend….she is so strong; but I know where you’re coming from. It’s hard to be a cheerleader. Very tiring. We all want life back. My heart breaks for you because you’re so exhausted. I can’t help except to send you my prayer tonite…to help relieve your stress. You are NOT alone❤️

First, I am so sorry for your loss. I’m sure you miss your wife terribly and it’s kind of you to share your experiences with me. It helps so much to hear how you managed care and especially support for her needs and expectations. I have found that depression is a huge part of this journey and I’m trying daily to spend time outdoors, in the garden, and at the beach for sunrises when he isn’t too exhausted. We are choosing to take an optimistic attitude about recovery and, even though it’s difficult, I think it is necessary to keep hope alive.
The last paragraph gave me much to think about and I will keep it in mind. I think you must’ve been a good caregiver and I hope your mind is at peace.