What am I in for as mom approaches final stages?

this place is a gold mine of comfort and crucial information. however, please dont pray for me. when god is in asia, im in indiana. when hes in indiana im laying low in the outback or something. we respect each others different idealogies and personal space. im kidding, its good medicine..

Good morning
I thought I would stop by and re-read some posts. I really appreciate all your thoughts and prayers. I lost my mom back in Aug '13. She really took a turn for the worse. I had her in a nursing home the last 5mo. She did good then the last three days were rapid. Sad to watch. But, Im glad she didn't linger on and suffer. I kept her comfortable and at peace. She passed with her family at her side. I miss her. But, I know she is where she wanted to be.
Thank you all and I send prayers to you all.

Hello my dear. I am in your exact same position. My mother is 75 1/2 and has been fighting multiple mylenoma, 2 heart attacks and one was recent along with aggressive spine and back surgery last September. I have been in the hospital more times on my own, just me taking care of mom. I left my full time, good paying job 9/11/11. With congestive failure occuring regularly, they now want to go into the heart any repair 3 clogged arteries. She will not let them open her chest. If it comes to stents she might or might not do it. She forgets alot, but she is still sharp enough 50% of the time to find out escatly what she wants me to do. I love my mom, so it is not an issue for me in the things I do. Here is the good part I have some great advice for YOU:

Call Amy Goldsbury at Cancer Care Point Center, 2585 Samaritan Drive, Los Gatos, CA @ 408 402-6611. Tell her your brief story and she will help you in the ways I guarantee you need and want. Maybe I will see you over there for one of their films and lectures of help. Take care of yourself too!!! William

I feel for you! It is not an easy task to go through but unfortunately, we will all go through this and eventually death. We just hope there will be a kind, understanding and compassionate person to walk this stage of life with us when our time comes! I am an LVN (nurse) and with my experiences of dealing with elder care, they regress back to being children again. Sometimes they are in pain and that makes them angry because they cannot control the situation. Always work closely with their medical staff to monitor and hopefully control the pain and there might be a change in attitude. I experienced the same situation with my own mother. She was the sweetest lady but we could tell that when she is in pain, her attitude change. Please try that and hope this helps!

Good morning to all
I have a question. We have gone through all the standard testing. We did a lung biopsy. Confirmed Cancer. MRI of the head. Nothing. PetScan of the body. Nothing. Ok, now we know where we stand. However, here is something that has stumped everybody. Two days after the biopsy mom started developing blisters. I thought she was just allergic to the bandaid. But then she was completely consumed with these blisters. The only place she didnt get them was her face. Im talking she even had them on the soles of her feet and the palms of her hands. Has anybody dealt with this? The oncologist said it was not related to the cancer. The dermatologist said yes it was related. AND that is what I researched it to be. Pemphigus, Pemphegoid, Linear IGA Desease. All of which are basically the same thing. Has anybody ever experienced this? Im amazed. Its horrible. She is on a high dosage of prednisone and antibiotics. I'm afraid this is going to be a continueous thing. But, what really bothers me is she is wearing down. Her breathing is getting worse. Cant seem to get her to stop sitting in the garage smoking. She is breathing and rebreathing her smoke. Its like a fog when I go talk to her. I cant stand to go out there and she gets mad when I cant stay out there. Its interesting how she cant breath and walk across the room. But, she is adement about getting to her chair for a smoke.
That to me....is a true addiction.
Anyway, if you have any experience with this blister issue...would you let me know. Thanks to all who have added to this news feed. You all have been great help.

Hi csctle, Because of the nature of my dad's cancer, I don't know if I can relate much that is helpful. Due to the location of his tumor, he lost his ability to communicate about a month before he died. Walking was no problem, though he would trip at times. He slept a lot in the last month, but was often restless at night and would wander the house in the dark. My brother and I took turns sleeping on the couch to keep an eye on him.

I wish I could be more helpful. You and mom are going through so much right now. It's really hard for you both.

I don't understand about the meds. That is one aspect where hospice is extremely helpful. They've seen it all before and know how to best prescribe meds for pain, anxiety and such. Plus Medicare covers all drug expenses while a patient is on hospice. They'll even provide a Medicare paid hospital bed if the patient desires to die at home. The nurse and social worker visit weekly and there is a nurse on call that will come to your home 24/7. All of this is covered under Medicare.

That practical stuff was a blessing, but more than that, the hospice people were a tremendous resource. From experience, they can tell you what to expect in the days ahead and walk with you and your loved one mentally, emotionally and spiritually if that is what you both want. I can't imagine going through this without their help. It's unknown territory for most people, me included, and their wisdom made all of the difference in the world for my family.

Hugs to you and your mom and I hope you get some restful sleep tonight.

Suzie

Thanks Suzie for the insight. Can you tell me more? I'm wanting to know how did you Dad act before going into the final stages. My Mom is losing her thoughts. She can't seem to get it together. She is doing some weird things. Like trying to put a pill bottle in her mouth. Lighting a cigarette with another unlit cigarette. Its comical yet sad. But, she isnt like this all the time. She can be coherant one moment and then it hits. She can't read, finish a thought or even walk. Its kinda scarey. She doesnt like that I have taken her meds from her. And...she doesnt know I have taken her gun and car keys away. I will really be in trouble once she figures those things out.
As I write...she is sitting here argueing about getting her meds back. I'm lying to her she says. I'm not giving her the proper doses of anything. Blah Blah Blah. Oh well, I'm getting used to it. And I know it will only get worse. But, thats what I've got going on around here.
Thanks for all the responses. I will be busy today.

You've got a lot on your plate, csctle. It's good you have faith in God. It kept me going when my dad was dying of brain cancer.

I can't emphasize enough the urgency to call in hospice though. You may be feeling like a Girl Scout today; and you sound like me - organized, want to take on stuff on your own, but don't, please. Journaling and all is good, even working on a tribute to keep things in perspective...that's all great! And a darned pretty good distraction, because we DO need mental breaks when our world is swirling out of control, even if it is doing positive steps dealing with future grief.

I'll be blunt though, because I have a spidey-sense you can handle it - dying is often a very messy, heart shredding, no sleep, kind of business and you will need a support team. We were very fortunate in the hospice people that guided us in our journey. I was scared s#itless when my father received his diagnosis of brain cancer with 3 to 6 months. He died in 2 and a half months.

Here's the nitty gritty. Your mom's doc will need to sign off on her need for hospice. Once that happens, a social worker from hospice and a nurse will show up for an assessment of patient and family needs. I know I freaked out with the refrigerated morphine kit (of course, not in my dad's presence) but it made it so real. This is really happening???

What I'm trying to say is that in the initial stages it's just so much "planning" and then you're in unknown territory when cancer takes it final route.

My dad was okay at home until he had a really bad seizure. Thankfully, my brother was there. He went to the hospice house that day and died two weeks later. My mom was an incapacitated mess during this whole time, only visited dad once. That's a whole 'nother story I've talked about on here.

I encourage you to look for support. You can't do this alone and it's okay to ask for help. We're only human and God expects us to rely on one another.

It's the right thing to do. Prayers for your brother and you in the times ahead.

Suzie

Thank you all for your responses. I know I need to check into Hospice. I posted this earlier today. I can really see signs of her decline.I know we are dealing with more than we know. It has however, made me calmer around her. This is a good thing. I woke up with a "Girl Scout" attitude. I need to prepare myself for the "What If". So, I started getting things in order. Thank you for your prayers, info and concerns. I have been journalling about my mom for almost 2yrs. I've got a pretty good start to a humorous tribute. And its helping me cope. My brother has been recently diagnosed with mouth cancer. So, my plate may be full.....but, my blessings are abundant. Its all gonna be ok. Because My God says so.

Hey CSC...I am sorry about your mom's diagnosis. I am not sure if my story helps but this was my experience. My dad would never go to the Dr. One day he just fainted-for lack of a better word. We thought he had a stroke cause he couldn't speak and was combative when he was found on the floor. The hospital did all kinds of tests and it turned out he had lung cancer, a tumor in his brain (which made him pass out and was putting pressure on the speech center of his brain) and cancer in some of his bones. They wanted to start chemo the next morning! HA! Dad said no way! He was 76 and told them that you don't live/survive/recover with that much cancer in you so why go thru all that... So, he came home. They gave him 6 months but he only lived 64 days. For us kids, it was really a wonderful time. He was kind and loving (not his strong suits!) and we all had time to talk to him and say what we needed to. I think he was able to say what he needed too. He started out strong and slowly got weaker...stopped eating...barely spoke...and then just died. We had hospice helping us out (after the tumor in his brain was shrunk with radiation so he could speak and be coherent while he died... It was the right thing to do don't get me wrong!) He let us come to his Dr appts and ask questions. He asked the Dr if he could ever drive again-which was a no! So, there was never any problem with us having to tell him he couldn't... Hospice was wonderful. They would bathe him and shave him if he wanted them to. He had morphine in the end for pain. All the siblings had been there and had just left him and I swear he waited till everyone was gone before he passed. It was hard on my mom but we all tried to pitch in. I would go over every morning and clean him up from the night before and then go to work. I also drove him to his radiation appointments for the couple weeks he did that. Other sibs helped mom in other ways. Food was made and dropped off. I was, and I think my sibs were glad we had that time with him and are happy he didn't just die the day he passed out. I am not sure what you are looking for, but that is my story... I hope that this will not be a painful process for you or your mom. Knowing we had limitied time made us appreciate the time we had and we are greatful he didn't suffer too long too. Hospice is a great help and are very knowledgeable about the road you are traveling. I will keep you in my prayers! Mame

My mother was diagnosed with small cell cancer lung cancer, a very aggressive form of lung cancer,stage 2/3 almost 5 years ago. At the time of diagnosis, the doctors at Dana Farber Cancer Insitute in Boston estimated that she had 3 to six months to live without treatment. Different treatment options were explored, surgery (not an option) radiation (did not shrink the tumor significantly), standard chemo (discontinued-to sick). The last and only option left , participate in a clinical trial study, a long shot and was given an experimental drug called tarcevia, chemo- pill form, that only works in 10 percent of the cases. She is still going strong and unless I told you that she had lung cancer you would never suspect. The drug is very expensive but there are foundations that will provide the medications based on financial need. From reading your post, treatment was not really on the table of options- it was not clear to me if this meant the cancer is at the stage it is to advanced. Reading your post I felt a need to share especially if your mom decides to re-evaluate or explore other options . I do realize every situation is unique and my thoughts and prayers to you and your mother.

I concur with deffer12. You both need guidance and support and Hospice are gifted professionals. Take Care

Contact you local hospice. They will guide you through this tough time and help you to make decisions that will best suit you and your mom. Good luck!