Family talk coping
I know my health issues impact my family. They are aware of my Stage 4 COPD, Severe emphysema plus other medical conditions. I let them know my symptoms, things that can trigger flare ups, how they can help. I try to leave the room if I'm having an episode as I know it upsets them. I do my best not to cry in front of them. I have lost a LOT of weight and they help by bringing me food but get upset with me if I dont eat it right then or dont eat it all at once. I've explained that my appetite comes and goes and when I eat it's usually small amounts because I'll either get nauseous or have increased difficulty breathing. I always say thank you. My brother brought me half dozen jelly donuts of which I ate 1. I had just eaten another small meal and I got nauseous and my breathing acted up. I went into the kitchen and leaned on counter doing breathing techniques and my brother was asking me something from the living room. I struggled just to say give me a minute or 2. Getting myself breathing ok I walked into living room to talk to him. Well he was gone, walked out the back door and went home. I felt horrible. I texted him saying I didnt mean to be rude and not answer his questions but I had to focus on my breathing so it would not flare worse. I mentioned again that at times I just cant get but a word or 2 out and if bad just cant. I apologized again and thanked him again for bringing me the donuts. He had brought me food when I was in hospital of which I ate the apple pie but the bbq was still there the next day. You're not going to get any better if you dont eat he said as he has before as have my son. I have talked to them about my disease and that it does not get better and I do force myself to eat some everyday and take a plethora of supplements and high calorie protein shakes.
I have printed out several of the great articles found here to let them read. Has anyone else dealt with this? What helped? And it's a reminder for us to understand others are effected by what we are going thru and we need to help as we can. I've suggested counseling for my adult son and/or research and read but he refused counseling.
So any insights suggestions experiences appreciated. Thx.
First of all this is about the end of your life...
Have you explained to your son what it is that you want and how it is that you feel?
I came home to find my partner passed last october in his armchair. I knew we didnt Have long but I did think we still had a few years. I know he tried and was strong for me but I wish so much that he acknowledged the end stage.
Yet that was my wish and he did it his way and that is that.
Dont let anyone bully or guilt you. Do this your way and im ever so pleased yr reaching out.
Very best to you and your family xThank you for sharing your experience and my heartfelt empathy of finding your partner like that, it literally gave me that black hole gut feeling. Part of that being one of the fears I have for my son coming home and finding me like that. I have explained to both my son at home, and my daughter, who just entered her third trimester the progression and prognosis and do use both end and stage 4. I have made burial prearrangements and have shown them where the papers are. Made a list of all bills and how paid,, bank info, etc etc. That was done over a year ago. Yesterday i had yet another flare up, in ER and admitted so I'm typing this from my hospital bed. I currently have Palliative care but they have now encouraged hospice care. My wife of over 30 yrs passed away from breast cancer 11 yrs ago, she hated hospitals, and did hospice at home and passed away at night with me, my son, and 15 yr old daughter laying by her side. You stated he was strong for you and you knew he was being so for you. I understand you wanting him to acknowledge end stage and can relate. But one of many things I've learned from this site is everyone's experience having this disease differs including "end stage". For some it can progress quick, in months, others for years but for exactly when no one knows. Part of his being strong for you and trying shows the love your partner had for you. Another part, in his mind and caring for you, was to perhaps spare what he considered saddening to you and enjoy the time you had, though you wished otherwise and I can relate with that. Yes it was your wish yet he did it his way. To me it may have been just one more way your partner felt he could share not just his love and care for you but to spare you an emotional clock timer that no one knows when it will ring. My wife was given 2 weeks after her 6 yr battle. We began hospice. She hung in for 2 MONTHS. The clock given me was off by 6 weeks, but it could have been 6 days, even 6 hrs. Gosh, I hope some of this makes sense. Today, while in hospital, I have to begin on a decision of how I will tell my children my end is near and will soon enter hospice. But I plan on fighting as hard as I can to try to last til April to get to see and hold my 1st grandchild. And i cried and said no when my daughter told me she wanted to induce labor a month early. She knows my condition but have to now update her to hospice being highly recommended for me. Sorry for writing a short novel but hey it passed my hospital time lol. Now to order hospital lunch. Be strong all, be kind, and compliment and thank overworked but dedicated hospital staff.
and Your Article and Comment are WELL TAKEN and SHOULD Be taken SERIOUSLY!! no way, you write as much as you want. I cant express enough the comfort of speaking to someone who sincerly understands and can genuinely empathise. I am so pleased to hear that you are in hospital and getting care and have got a plan for when you are discharged. I cant begin to know how scary and overwhelming this must be for you and im sorry that hearing how I found my partner caused you discomfort. It is so unfair hearing of what you and your children now how to face considering the heart ache you have all already endured with your wifes illness and death. I know your son has refused counciling and that must be fustrating for you as you want to help him and he visa versa for you. All I can say his my brother died at 21 from epilepsy, my mother six weeks later from an overdose. My first husband died at 49 from alcholisim and now my second from sepsis caused by copd. Only now am I starting berevement counciling. I really should have done it alot sooner. Death It would appear is as natural as birth but one we celebrate and the other we bottle up and run away from at all costs. Until It happens to us or the ones we love. I was an utter cow bag to my last husband in his final year. I couldnt understand why since covid he totally gave up. I resented doing everything for him when he did nothing to fight for his life and I even threatned to leave him 3 months before he died. Stupidly I thought prehaps I was enabling him and without me around he would have to get outside help but of course I knew the truth and I didnt leave but I hate how much Stupid stuff I said and did because of how I felt and now feel. Anyway, im the one who is sorry for writing my own novel and putting this on you now. Like I said im going to get counciling. Prehaps reading some of my words will make you understand why they fuss about food and other Stupid stuff with you. It is Only now after the loss I see how Stupid stuff Like that really was and what a total waste of time and life all the fussing and fighting was and i had no right to guilt trip the way i did but now i can never change it but would do anything if only i could.
Thank you for fighting for life to see your grandchild. That is wonderful and courageous to hear. Thank you for taking the time to write, explain your situation and to empathise with me. Thank you for thanking the nhs staff. Please take care and get to where ever it is that you would like to be xx
My heart goes out to you. Thank you for sharing this very vulnerable and honest perspective -- this is what makes our community here so great. <3 I just want to say I'm proud of you for deciding to start counseling. It's not easy to sort through all of that. I'm sure you will hear this in therapy, but try not to beat yourself up for the way you reacted in the last few months with your husband. Illness, caregiving, marriage, changing dynamics ... all of that is HARD and terribly stressful. You were in a tough place, too, and I hope with time you'll forgive yourself for it. I'm glad you're here. Sending big hugs to you tonight! -Melissa, copd.net team
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