STEAM ROOM FOR ANGER
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Our doctors will communicate with either of us for our health issues since we are usually there are they know us both. If they are willing to communicate with you or you can email their office (which we do though their communication system). They may be able to explain the changes in the meds to you at least so you know what is going on better.
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Got a small garden planted this weekend. I called my sister and brother in law to come over. If I need help, I ask. It would have taken me hours to do what the 3 of us did in less than 1.
Hubs has finished whole brain radiation. Last week I did call the MOs office and spoke to a nurse to say I can't tell if it's the radiation, the medication, or the cancer that has him on a decline. Gave her all the stuff, weight loss, extreme fatigue, not eating or drinking much, sleeping a lot. She said he could have IV fluids if he gets too de-hydrated that may give him a boost. Plus see what his labs say. I said I just wanted to report in since it was a definite change. When his sister was here helping me and listening to me talk through stuff, I thought I'm just going to let him be. Let his brain rest. Quit trying to get him up to eat or drink. As I mentioned before I'm probably over bearing with the -you have to eat this now---you have to take this now. Poor guy. He is yelling at me although his voice is much softer now. Sometimes I just the hand up to stop! I was glad to be outside most of the day on Saturday. I did the same yesterday. I let him be as much as possible. Today, he's up, has some pain, he ate a scrambled egg. He is drinking some. I hated to give him meds seeing him awake, but I don't want NOT to. The memantine and steroid as well as the treatment is what I think caused this decline since he seems way more awake today, although not all the way with it, but better than what he was. I'm still looking death in the face everyday, but if I get one more day, it's one more day. Our daughter broke down watching him last week. He told her he wasn't going anywhere yet.
He made his own cup of tea. He's a little wobbly on his feet. I was watching him earlier, and he told me to quit staring!! Anyway, I hope he continues to rebound a bit. If it's enough to start another chemo is to be determined. I don't see it happening next week, but maybe the following? He sees the MO on Thurs. I took him Friday morning for blood work. He took the elevator up, but took the stairs down. I couldn't believe it. His pants were falling off of him as he was walking out the door and I pulled up to get him. Just thought I'd leave you with that visual!
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ctmbsikia - My husband died very suddenly and unexpectedly. I often wondered if it was better or worse. I did not get the chance of knowing he was going and left some things unsaid. But, I did not have to watch him suffer and die a little each day, which is hard on him, you, and all of your loved ones. I am praying for strength and peace for all.
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I'm so sorry mistyeyes. Once I had time to process a few loved ones deaths, namely my parents, in my heart and mind I am convinced dropping dead is better. If I were to have a choice, which I do not. Yes, it is sudden and can cause trauma to others, even ptsd. My father had a coronary collapse. He was of course the main caregiver for my mom who we all thought would go first since she was the sickly one. Wow, what a wake up call. It turned my life up side down for a bit. I took FMLA to stay with her while my sibs and I figured things out. It all worked out, she also had dementia so I'm not sure she knew she was dying. I bugged out of being with her at her time of death. She told me to go, so I did. My husband was an absolute rock to me during this year. He took over our home bills, cleaning, everything. He was very supportive during my devastation. I am comforted that I was able to hear my Dad telling me he just checked out. I don't feel guilty and don't get consumed with thoughts of did I do enough? Did I see the signs? Should I have stayed longer with my mom the night she died? Sometimes you just have to let things be and not drive yourself crazy looking for answers. Life as well as death is a cycle of events that none of us know how it's going to go. Even a suicidal person doesn't know if they will be successful or not.
I too, wish you peace and strength. These truly are the qualities needed to survive and eventually process a sudden death.
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I wasn't with either of my parents when they passed. Dad died suddenly as mom was helping him get ready to go to the hospital in 2003. He'd had the flu that week and was feeling bad that morning. She felt awful because she was helping him with his shoes and yelled at him to lift his foot - she looked up and he had died. When she died in 2018, Hubby and I got the flu just as she was so sick that she got sent to the hospital. We'd had to call the police to check on her because she lived in another town. We couldn't visit her for about three weeks because we were both coughing so much, PLUS hubby got a kidney stone. When we finally got to see her, she was on oxygen but pretty lively. My sister had been there nearly every day, and we told her we'd shop for some things for Mom the next day, then come the day after that. Mom never woke up the next day, just slept, then passed quietly that evening. I guess she needed to have my sister and me together there - and that day was one of the few times we didn't get in an argument.
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Well hubs has an MO appt. tomorrow morning. I think MO will ask hubs what he wants to do. Time for the talk. I've been on the phone with the NP, a nurse, a nurse at radiation, just trying to report how he is and to be sure I'm doing/dispensing things right. Yesterday I finally broke out the rescue inhaler. His breathing is bad but I'm being told unless there's an acute change they really don't want him going into a hospital setting. Trying to keep him upright or on one side. I wish he would talk to me. I really don't know what's going on inside but my instincts tell me he's still fighting. Doing my best to keep him comfortable. The NP is calling in some Remeron. Guess I'll be going out later today. Hope it helps with appetite and his sleeping. I called radiation because I couldn't remember about the steroid dosage, so have that understood now.
Don't feel much like working, so stepping away from this table will do some other chore until I can get back into it. So hard. I hope I can get him to eat today. But, if he doesn't want to, I can't force it.
Lastly, in the premise of this thread (THE STEAM ROOM) I'll leave you with:
1-A friend texted to see if her husband could call hubs yesterday. He has some burner thing in his basement and months ago my hubs said he would take it. Um---he doesn't want it now, so please don't call!!!!!!
2-Neighbor kid knocked on the door. Can hubs come over and help his mom put in a new hand held shower head?
Um-NOOOOOOOOOOOOO!!!!!!!!!! Jesus. Anyway, made me angry. I never answered my friend. She stuck her head in the door Saturday and she saw how he was.
3-Girlfriend group text- my crazy friend got yet another job. In the course of that conversation, did anyone ask how he was? How I was? Um, that's a no. Again.
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ctmbslkia, so thinking of you just now. I was with my father during the last weeks of his life and saw so many of the changes you are seeing with your DH. How are you doing, other than hanging on by a thread at times? Try to take care of yourself, I know that is not always easy.
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Thank you. I went and picked up the new med and a Breo refill. I checked on him while he was in the bathroom and he couldn't get up. Had to plunge the toilet!! Good grief, is he literally shitting bricks? LOL Did not see anything alarming in there, so that's good. I got it going, he's resting. He grazed on a scrambled egg. Only wants his hot tea and water. Hope the new med which I am to give later lets him sleep and in a day or two stimulates his appetite. I will ask Docs opinion of his hydration and maybe he will offer him an IV of fluids tomorrow.
If he happens to rest while I finish the work day, next challenge will be getting him into a bath or a shower. His last one was a week ago today. Oh boy. I can tell you his color looks good despite the shortness of breath and all the coughing. I also gave him a zinc sucker. I read where some doc said it helped some covid patients.
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ctmbsikia, I have been following your posts and my heart goes out to you. Remeron will take a week or 2 to help with his appetite. A nebulizer treatment might help with his breathing and cough. Roxanol would also help. He has to let the doctors know he is done. Maybe, like my Dad, he is waiting for you to start the conversation about it? It would be wonderful for both of you to have Hospice come in and help you. Even with Covid19 my MIL is being seen. Best wishes..
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Hubs is actually sleeping. I'm so glad he let me help him some today, in trying to keep him propped up and get off the toilet! He is sleeping now although not so upright. He seems peaceful at the moment. The last 2 days I don't think he slept as much as he had over the weekend.
I'm cracking a little bit today. Our daughter is coming back tomorrow/ When she called she today, she caught me in the middle of a cry. My husbands niece who is a stage IV bladder cancer patient was texting me today offering support which also made me cry. She calls her Uncle a beast! Told her she's a beast as well. Was nice that she offered some advice and wants to see him, but when it's safe, or when it's time whichever comes first I guess.
My daughter and I have had the talk already. I still have to remember that she is only 33 -not my age -and our son is only 26. Trying to relay my thoughts, emotions, and information on their level. I don't know that I am able to do this efficiently. I know I want hubs to let us know what he wants, what he needs. I do not push, and although I know the outcome you can't imagine how horrible this is. One minute I want him to just die already, get it over with, then the next minute, most of me will continue to fight as long as possible. THEN the kicker is-----our kids don't deserve this. I must remain strong for them and be able to relate to them on their level of the devastation that's to come. K-I can do it. I swear to Christ I think that's why I got cancer first. So I would wake up, don't be oblivious to this disease.
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ctmb, I'm so glad you have this place to let things out. I read your posts with awe. You are very strong and smart. One thing I learned when my MIL was dying was not to coax eating. My SIL was relentless, wanting her mom to eat. Doctors finally had to make her stop.
Sometimes I wonder when thinking about your situation, and I do a lot, whether you and your DH both are thinking about stopping but don't know the other is. He wants to keep going because he thinks you do. You want to keep going because you think he does. Cross-purposes. I would just try to talk more, about anything. Maybe the topic will bubble to the surface serendipitously.
Just know we here think of you. Slogging through this must be so difficult.
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cctmbsikia
Sending you a huge hug. And I think Jaycee49's advice is spot on about letting The Topic come up naturally while talking about other things.
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ctmb, I have been away from the site more than normal lately. I come here with a lump in my throat and fear for you. I wish I had some wise words to offer, but I don't. This is awful. This is painful. This is isolating and raw. Hugging you to give you strength and energy to push through what you are going to have to deal with. I pray for peace for you both and your kids.
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I have no words either but I am sitting with you (virtually) as you go through this. We all are, we are with you for you to share what you need or want to share.
My psychologist said something about that in my meeting with her on Tuesday--she was telling me this for me but I think it's something I need to do with everyone: be with those feelings, sit with them, don't stuff them. Just let them be.
So that's why I say I am sitting with you, I'm present with you as are we all here. I can't make anything turn out differently but I can do this much. <<hug>>
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ctmbsikia— sending you hugs. As Runor and edj3 said so well, I wish I had the right words that would physically provide you energy and support via this virtual space. Being a caregiver is so all consuming. It’s the hardest thing to do, especially when you are supporting a loved one. I do feel that pain and wish I could ease all that you and your dh are going thru.
Holding your hand. Keeping your family in my prayers.
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Managed to get him rinsed off in the shower this morning. I put pjs on him and off we went to MO office. He called an ambulance so now he’s being admitted to the hospital. No visitors!! So now I’m home waiting to talk to some strange Dr I don’t know. He’s negative for covid/19 and has pneumonia and a fib going on. His blood oxygen was 79-80 so he’s getting oxygen. He has his cell so we’ve spoken a couple of times. Still in the er. Hopefully my phone will start ringing soon when he gets to a roomand we can get him stabilized and back home in a few short days.
Thank you all you wonderful, kind, and thoughtful women. I really appreciate this virtual support.
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ctm, so sorry this is such a tough journey. Wishing you more strength and peace with how it unfolds.
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Im so sorry you have to be separated, but it's good he's getting the treatment he needs. I think this part is roughest for you. Vent all you need; were here for you.
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So sorry we can't give you more than virtual support but do know we are here with all the virtual support you can use. Hope your phone has been ringing...
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Best wishes for your husband and support for you as well.
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CTMBSIKIA,
Wow, I have been following your story here for awhile. I can’t imagine how difficult caring for your husband by yourself must be. I am sorry that you are separated but he is getting good care in the hospital and maybe his hospital stay will provide a respite for you for a couple of days.
With him in the hospital this could be an opportunity to seek help. You should not be caring for him alone...it’s too difficult. The hospital social worker can make arrangements for in-home Hospice care. Upon his release from the hospital his doctor could write orders for a home health aid that could come in to help bath him and take care of his other personal needs. Hospice won’t be there around the clock but having them involved is so helpful. They can support you and your adult children through this process plus they can answer your questions regarding trying to feed him and keep him hydrated. Also, if Hospice takes over his care you won’t be having to take him to doctor’s appointments. You will have a nurse assigned to him that will come to the house.
Lastly, as so many of these great women have stated...Hospice will help with “the talk”. He may be fighting because he is afraid to leave you because you are a cancer patient too. You mayhave to give your DH permission to go with the assurance that you will be okay.
This is so difficult and I am sending a huge bear hug. You are in my thoughts and prayers🙏.
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You are in my thoughts and prayers 🙏
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Once again you gals have no idea how much your posts are helping me! Thank you!!!
I awoke from some sort of where am I what’s ringing at 6 am and it was hubs. I had the phone right by my head. He was confused and said start driving over here they’re letting me go. Oh boy. Daughter and I called the nurse. The afib quit last night and he’s in normal heart rhythm. I was with him most of the morning. It was hard to see him struggling to breathe and get comfortable. The day shift nurse assured me his mental status was ok. He answered all her questions correctly. I spent what time I had there getting him comfy.
Once he seemed restful I left. His nurse would have let me hang longer but was told 1 visitor per day for up to 2 hours. I left at the 3 1/2 hr Mark. That’s about all I can stand with wearing the mask. Oncology checked on him today and he called to say he has gotten sick more so from the recent treatments rather than disease progression. I asked, how will we know? He said we hope to see some improvements over the weekend. Weaning him off the steroid and he’s off the memory med-thank goodness. He’s getting oxygen and antibiotics. A little morphine for pain as needed. I’m good with all of this. When the admitting doc called us last night she assured me his dnr was active.
All in all it hasn’t been that bad of a day. He’s where he needs to be. Hopeful for a rebound. One day at a time.
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Ctm sending hugs, thoughts and prayers to you, hubby and the family.
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ctm, I guess I posted while you were posting and didn’t realize your Dh was in hospital. Sending huge hugs and even more prayers! Glad he was a little better today!
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I am In your pocket.
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I do not feel worthy to rant but this seems like a safe space so I am going to have at it. I feel unworthy because I was only DCIS Stage 0. So many of you ladies here have a way worse row to hoe. But anyway, here is my rant:
January 2020 I was let go from my job for no good reason other than I brought a customer problem to senior management that made them look bad and it was easier to get rid of me than to akcnowledge the problem and solve it. To the company’s credit, I got a severance and continued health care coverage. So the company gets kudos, but there is a curse on the head of the guy who caused this and offered my head on a platter. Karma is a bitch AND she WILL exact her revenge when he least expects it!
February 2020: routine mammo reveals possible issue. Biopsy reveals DCIS. Follow ups with surgeon and subsequently I decide to have MX no reconstruction in March 2020.
By early April, it is obvious I have major scar tissue forming already. Call the surgeon and hospital and am told that their PT group is closed “out of an abundance of caution to protect the chemo patients”. Yeah, I get it, I’m so freaking lucky that I didn’t need chemo, but your center has like 4 separate entrances, can’t you keep the chemo patients to their own entrance and protect them, but still let others get the therapy they need?
May: I get fed up with my provider still not offering PT and get a script to go elsewhere. I find an amazing PT who, after 6 visits, has made a huge difference in ROM and reducing hardness of scar tissue.
Oh, and I’m also amazingly blessed that in the middle of all this, I managed to find a new job that started mid-May. So I feel like I am super lucky how it all worked out, but wanted to rant because it took every fiber of my strength to fight and advocate to get the treatment I needed in a timely manner, while I still had insurance, while job hunting, during COVID-19, while listening to other people moan about not being able to see their hair stylist as their worst suffering during this time that people are freaking dying from the viral infection.
Sometimes, being a strong woman is very tiring and when I think about what all of us have been through, I want to burst into tears.0 -
Cake, you are SO entitled to your rant. Cancer is cancer. What we all get put through to deal with the repercussions of that is criminal. Please do not feel unworthy. The strong woman that you are would not.
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Thanks, JC! It helps hearing that I am okay feeling a bit overwhelmed from this journey!
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cake, go ahead and have a good cry-- you've earned it!
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