Feeling lonely and isolated

Kirismum

My husband was recently diagnosed with non Hodgkin’s lymphoma. He is being treated at Gibbs Cancer Center in Pelham, SC. I am his caregiver. The prognosis is good. We lost our daughter to breast cancer 7 years ago. My husband does not want his diagnosis to be public; only a few close friends know. We are new to the area and I don’t want to burden new friends with my emotional needs. I have PTSD from my daughter’s illness and death and I feel isolated and lonely. I just need someone to talk to, preferably privately and online. I can handle the physical parts of caregiving easily but I have a history of clinical depression and I need emotional support. 

Miranda7

I am very sorry for the loss of your daughter and now fir your husband’s diagnosis. I am sure you are in shock… Please try to lean on God as much as possible. Tell people at church what you’re going through and they will help you. 🙏🏽🙏🏽🙏🏽🙏🏽🩵🩵🩵🩵

lizzy123456

I’m sorry you’re going through this. Vent here online when you can and there is a chat room as well. Self-care is also important. Take time for yourself and do things you love. I wish you the best!

Kris1226

First....BIG hugs to you. My husband was just diagnosed this week and I'm feeling lost, scared and inadequate. My heart goes out to you.

patsydinkelspiel

i am so sorry to hear of your husband’s diagnosis. My partner is undergoing chemo with stage four stomach cancer and I anticipate that I will finally cry and let it all out after I can’t be strong anymore. It’s just not today. Feeling lonely but grateful for his presence today.

kuronrp

https://csn.cancer.org/discussion/326686/feeling-lonely-and-isolated

https://csn.cancer.org/discussion/326686/feeling-lonely-and-isolated

You are very tough and I pray you continue to stay uplifted and positive as much as possible. I know losing your daughter was tough but on the brighter side, your husband has a survival expectation which is amazing news. Much love to you and your family

martinique

https://csn.cancer.org/discussion/326686/feeling-lonely-and-isolated

today I feel like I could put my head through a wall. I’ve dealt single handedly for the past two years with my husband’s cancer. No one has stepped up to give either of us a break I am just shocked now my husband is recovering from another round of treatment but for two years every single day he’s negative about everything when we won’t know for another three months if the treatment has been effective. His original diagnosis was at the same time I had made up my mind to leave but how could I. He was miserable and bad tempered before now it’s worse if that’s possible. Yes he has cancer and I am sorry for that but right now I don’t know how I am going to get through this and getting help is ridiculous have any of these professionals actually gone through this. I can’t even pray anymore.

RachelsGarden

https://csn.cancer.org/discussion/comment/1718617#Comment_1718617

I was a caregiver for my mom with end stage ovarian and then later for my dad with dementia. Caregiving is the loneliest, hardest thing I have ever had to do and I am also a cancer survivor. I was visiting a sister and she told her friends that I was my dad's caregiver. One of them leaned over and whispered to me that she felt so trapped. this is the thing, you can't just tell people how you really feel about your caregiving, no one understands unless they have been through it. Caregivers many time don't survive caregiving because it is such a hard and thankless job. I have 2 sisters and a brother and was pretty much abandoned by them and told that I was exaggerating. so no real help from them. I ended up in the hospital with pneumonia and had no clue I was even sick. I also lost almost all of my friends because I had one topic of conversation. All this to say, you have to take care of yourself however you can. I found a support group in my town and it saved my life. I could sat anything there, my frustrations, my anger, my feelings of being trapped and overwhelmed. You can do this here. There should be no judgement here.

Hospice is often thought of as a late stage thing, but it really isn't. Contact them and if you qualify for their help, they have volunteers who will come in and sit with your person so you can get away for a breather. Also, some assisted living and nursing homes will offer respite help. I used that a couple of times in my area and that was very nice. Once overnight. Don't feel guilty over how you feel. You are in an impossible position. I loved both of my parents and looking back I do appreciate the time I spent with them. But going through it was hell. My dad was a beautiful, gentle soul, but there were days I hated him. And the only people who understand this are other caregivers. And no amount of platitudes that people gave me, helped. I needed real, solid, physical help.

I don't know if reading this will help you or not, maybe I sound like a horrible person here, but I hope that you know you are not alone. There are others who understand the raw feelings that you have. I also started doing art journaling during this time, and wrote out and painted my feelings in those books. Anyway, I hope things improve for you. Don't be hard on yourself. It's all okay. Do what you can for yourself, be patient with yourself.

Linda

doggiebert

https://csn.cancer.org/discussion/comment/1718864#Comment_1718864

so true. I posted today for the first time. First time period in any chat room or group. You are right in saying caregiving is a lonely & thankless job. I am caring for my 22 year old daughter who is both clinically depressed with many years, then recently diagnosed with Hodgkin Lymphoma.

I called her dad today to vent my frustrations & he said - she’s going through a hard time - it’s not about you. My feelings, my hurts count for nothing.

An interesting thing you said - caregivers don’t survive caregiving a lot of times .

I’m glad I read your post. For the first time. I feel that somebody understands me. Thanks.

RachelsGarden

Something I didn't mention in my reply above, is that for my entire life my mother, who I was caregiver for 18 months, and I never, ever, ever, got along. She wanted one type of daughter and it definately wasn't me. So not to get into any trauma and all that, but when I became her caregiver, I really thought everyone abandoned me because no one felt up to dealing with her issues. So as a first born, I stepped in. I also had the most adjustable schedule as she lived several states away. And truthfully and rightfully, a couple of my siblings would never be good caregivers. Anyway, so dealing with someone who is difficult when caregiving just adds another layer of stress and trauma on the caregiver. Distraction is important when they dissolve into not just those feelings of why me? But those feelings of anger that you will probably be the target of. My mom ranted about how everyone disrespected her. But I had a reservoir of things to distract her. We took all of her cards that she received and made a binder of them. We organized pictures and we also did her life story. Which did illuminate why she was the way she was. Most of all, I learned how to listen without taking anything she said personal. I wanted to, but soon realized that most of her anger was from her fear. I did leave the house for a couple of hours each day. She lived in a retirement community, so I would go to the pool in the afternoons and call my family with updates. And where can you cry and nobody will notice if you're in a pool with a wet face and hair. It's all from the chlories, right? Some mornings I wouldgo to the beach and walk. That really helped as well. My dad was still around, so I could leave her for a short while. But one day when I got back, she was choking and my dad didn't know what to do. I managed to get her settled. Also, when my mom was bedridden, I was at the pool making calls when I heard an ambulance coming. I knew immiediately that it was for them and with the DNR on the firg, I raced back to the house only to find my father was having a heart attack. Luckily my cousin was standing on the sidewalk with her luggage and was able to cancel her flight and stay with my mom. She was screaming that I needed to go to the hospital with dad, so I threw some clothes on and took off with him. I think now looking back, nothing will ever stress me out like that time. Anyway. Support groups are important! Find one! Online or in person. In person is better, but online is good too!

Love to you,

Linda