Do you feel forgotten as a caregiver?

lilmizmoore

I feel so alone and forgotten in all of this. This is my 4th time as a cancer caregiver. I lost my fiancee 6 years ago this New Years Eve, and 10months later my mom had breast cancer and survived. Two months ago my present partner of 4 years was diagnosed with throat cancer. I suffer from PTSD from the horrid journey with my deceased fiancee. I also have a heart condition. It's been horrible. I do go to counseling 1x week for the past few years.

Yesterday on Christmas, I sat here with no energy to do anything. Im so busy all the time (I have no help) that Im often irritable and just mentally drained. I just wanted a dinner other than a TV dinner or can of Spaghetti O's. It was really really depressing. I felt as if I was forgotten while everyone else around me was out enjoying their holiday and eating a good dinner. I felt weird asking if someone could bring me a "to-go' from someone's home. I was asked if Id like something and i said I did, but nobody every showed up or called.

Anyway, maybe Im expecting too much. I just dont feel I have anyone I can talk to these days, or anyone I can rely on. The only time I could truly get to myself is when he goes to chemo for 4-5 hours on Tuesdays. That time is taken up running errands and trying to squeeze my own appointments in that I cannot do the other days. By the time Im finished it's time to get him and take him to his radiation appointment. I feel Im headed into burnout mode very soon.

While ive been a caregiver before, I feel Im in new territory this time around. I just need a hug I suppose. All I do is cry in my room My boyfriend no longer sleeps in the same bed as me and has to sleep sitting up in recliner (he has COPD and throat cancer)

Im surely not looking for a pity party, but I just feel defeated and mentally and physically drained. I sure would l ike to hear some advice from the fellow caregivers out there. Thank you so much!

AnnaLeigh

I am so sorry that you are having to be a caregiver again while still trying to process the emotions from your prior experiences. You are obviously a very loving and kind person who is trying to do their best under the given circumstances.

Caregiving can be so lonely and isolating. People who have not experienced this will also not understand that the caregiver needs as much support and help as the person who is being treated for cancer. The entire world seems to revolve around the patient and their needs with the caregiver being shoved in to the shadows. Is it possible for your present partner to reach out to their family/friends to ask for support and help rather than you always having to request what is needed? Even some one to accompany your partner to treatment once or twice during the month can be a relief. Some cancer treatment centers also have volunteers that could help. Ask if there is a volunteer coordinator on staff at the treatment center and find out what services might be available.

I am certainly not going to offer platitudes such as "take care of yourself".... duh !! if it were only that easy! But a couple of things that helped me tremendously was to learn to let go of many, many things on my "to do" list that could actually wait or let go of things that were not going to make a difference in the long term anyway (think cleaning baseboards and organizing the pantry shelves). I was also surprised at how much a walk around the neighborhood (with deep breathing fresh air) helped clear my head of the endless list of things to be done and the list of things I was unable to do. Caregiver burnout is a REAL thing and the mental burdens only add to our fatigue.

It took a little time for me to understand that our close friends and family were not available or not willing to help and assist us because it caused emotions to arise in them that they were not able to deal with. Which is very sad because caregiving can teach us so much about ourselves and the close time spent with your loved one will always be cherished. Cherished inside memories long after the burden of caregiving has been lifted.

May your heart and mind be in peace with the past and with whatever the future may bring.

Scrambler

https://csn.cancer.org/discussion/326060/do-you-feel-forgotten-as-a-caregiver

I can absolutely understand how you feel. It feels like the world is moving along without you. I found myself feeling jealous of seeing someone ride a bicycle down the street, thinking, "What must that be like, not to have to worry about anyone but yourself?"

I often wonder if other people get tired of hearing about the experience of caretaking, so I just try not to bring it up with others. I can't get any support from the sole sibling I have, who is has psychological problems and tries to undermine caretaking on top of not taking on any of the burdens of caretaking. It feels like most people who have not been in a caretaking roll don't want to hear about it, let alone the surrounding complications. I wonder if they become anxious and scared, because they fear they may find themselves in a similar situation in the future. I find the people who have provided ongoing caretaking have a much greater band with for these conversations.

I think it's incredible how many times you've stepped up to care for others. I wonder if you did ask for someone to bring you a plate from their holiday dinner, if they might have felt relief at being asked for such a concrete nicety. I think many people wouldn't know how to be supportive, so they don't try. I would think someone would feel good about themselves if they were asked to bring you a plate of food on the holiday, that they were able to afford you that kindness without making a large or ongoing commitment. It would reinforce the feeling of connection with others too. I contemplate calling folks to chat, to connect, because I wonder if they feel nervous to call, that they won't be well equipped to hold a conversation about the reality of what it is like to care for others as intensely as many of us need to care for others.

I will be wishing for some kindness and relief for you from my little corner of the world.

lilmizmoore

Thank you everyone, and my apologies for such a lengthy delay in me responding, My boyfriend spent the entire month of January in/out of the hospital. His heart stopped twice and he had to spend time in the ICU. He now has a tracheostomy and stomach tube. Almost three weeks ago, he was transferred to a hospital about an hour away, which created some hardship for me getting there. I ended up injuring my back at home, and I couldnt travel. What a mess.

He had to start his radiation treatments all over again, and he became very weak. None of the rehab places would take him because he has the trach, and insurance wont pay for radiation/chemo while in rehab. It is still very mentally draining, however while he was away, I managed to get our home in order, and finally process things on my own. I had no visitors, and still very little help emotionally from anyone. I just shut myself in at home and took care of me, and managed to get things organized for all the supplies I knew he would come home with (im so glad I did that!)

My bedroom is what I like to call a "medical supply and equipment free zone" There are no medical supplies of any kind in my room. It is everywhere else in the house. My room is where I can go for my own solice and peaceful time to do what I want. Crafting, watching TV listening to music if I ever get the time. I have a Scentsy warmer in my room so I have relaxing scents in there all day long.

My boyfriend came home two nights ago, still weak, but in many ways much better. The past three times he was sent home throughout January I received zero training on anything, so this time I demanded I be shown how to change out his trach ( I didnt have a clue) I had to start advocating for myself.

It is still stressful, as I still have to do all the appointments AND home care. I am hoping to bring in home health for him so I can get a break for awhile. Im losing weight which isnt healthy and I look like Ive aged 10 years.

Maybe with all the time I ve had to myself I was able to regroup a little bit and get our household back in order. When he was diagnosed there was no time for anything, not even to process what was going on. Thanks again everyone for all the kind words and advice. <3

Scrambler

I'm glad to hear you are asking for more training in how to handle all of this. I'm even more glad to hear that you have staked out an area of the house to try and recoup some energy and respite for yourself!

I will continue to send my best wishes to both of you.