PLEASE HELP! (forgive this is long)

melmartin · Regular Joined: 11 Oct 2005 Posts: 14 Location: Oregon

My mother-in-law had a mastectomy 13yrs ago and was re-diagnosed w/stage IV mastatis (sp) on her lung and bones 5.5 yrs ago. When cancer came out of remission, oncologist gave worst case 1yr, best case 8 yrs.

Up until now she has done relatively well with some major and minor complications. Over the last yr she has had more major than minor. She was hospitalized for blood clots in November, had poor reaction to chemo treatment in Jan, had her lungs drained in March. After March she was put on hormone tx and did very well. Approximately 3.5 wks ago she said her cancer was active again and spread to her liver. 1.5 wk ago she was hospitalized for internal bleeding (bleeding in her stomach, intestines, nose, kidneys). They took her off Cumidan (sp) and inserted a filter to catch any blood clots. She started a new round of chemo treatments 2 wks ago. Over the last week she her condition has continued to deteriorate. If she stands she turns immediately yellow/orange, her stomach (especially her right side) is VERY distended, she is on oxygen off and on, she is no longer driving, and she sleeps more than she's awake. When awake she seems fairly alert and can carry a conversation. She is still eating (she says she only eats because she doesn't want to go on tube feeding but has no appetite). She is unsteady on her feet and her thinking is unclear. She has had some problems w/hallucinations. She told me Monday the cancer is everywhere. She specified her liver, heart and lungs.

My issue is this, she has a 14 yr old son. She has maintained a positive attitude and faith she was going to beat the cancer. She has not been put on hospice (I think the dr has recommended but she promised her son she would stay alive as long as possible). My husband and I are now taking over transporting him to and from school everyday. Neither my father-in-law, nor mother-in-law have had a candid discussion with him yet about her prognosis (he knows she has cancer and is sick but she has always rallied up until now) .

My question is what kind of timeline are we looking at considering her condition and what other symptoms should we be anticipating? When do we know it is very soon and when that time comes, how do I convince her or my father-in-law to talk to their son, especially if her time is likely very short. I'm SO WORRIED!!! I'm also concerned that she is home alone all day long with nobody around if she fell and was hurt (our entire family works). Please, any info would be so helpful!

MarkS

Mel,
I want to make it absolutely clear that I'm no expert. All I have to offer is my experience with my own mother. I related in another post that I spent every day with my mother in last two weeks or so of her life so I saw in detail what happened to her in those last two weeks, and it sounds a lot like what your mother-in-law is experiencing now.
Man, that last line was hard to type - I'm sorry Buddy.
The in again/out again mental state, hallucinations, unsteadiness, complete loss of appetite, it just all sounds so familliar. Based on what I saw with my mother I would say get her into the hospital and prepare yourself and the family.
Again, I'm sorry. I hope I'm wrong and she rallys again but - I don't think I'd count on it this time.

I'll try and check in here frequently and if there's anything I can help you with I'll try.

melmartin · Regular Joined: 11 Oct 2005 Posts: 14 Location: Oregon

Thank you for the information. I've known for years that eventually she was going to lose, but the reality is just so hard to bear and when someone fights so successfully for so long to begin to hope and believe a miracle is going to happen.

Another question, is there a ever a point upon a dr.'s evaluation and seeing the physical condition of a patient that they will say "no more" no matter what the patient wants? She all along has been SO adament to do everything humanly possible to stay alive.

I'm so sad for her son and hope I can convince my husband to talk to his dad about the importance of preparing this teenage boy for what is coming very soon.

MarkS

First, let me apologize for calling you "Buddy" I work with a guy named Mel so I just took for granted that it was a man writing. I'm sorry for that.

In answer to your question, I don't know. They never gave my mother anything but pain killers (morphine) in a drip. Now this is something she may have arranged with the doctor in advance. I think a lot of it has to do with the patients wishes but, as I said, I don't know that for sure.

Does your mother-in-laws doctor know what kind of shape she's in right now? He or she would be the one to really answer your questions and advise you. Don't take mine as the last word because I'm only going by my mother and that may not be typical at all - she usually wasn't (attempt at humor).

melmartin · Regular Joined: 11 Oct 2005 Posts: 14 Location: Oregon

No worries about the buddy part...

My mother-in-law went to emergency last night. Her condition continues to deteriorate. We were called to go pick up their son. My father-in-law was helping her out to the car. She said she was having "advanced symptoms" blood in the stool, very yellow eyes. She also had an emissis basin. She seemed very out of breath.

We haven't heard anything since we picked up their son at 8pm last night. Their son is still at our house. I asked him last night if he was ok. He said he's been through this 100 times so it was nothing new. He acted like everything was fine. I don't know how to help him. I don't want to over-step my bounds by telling him something his parents haven't even told him and if I push the "how are you doing" he's going to ask questions about why I ask. I'm feeling very frustrated, angry and SO SAD!! Today already has been so hard emotionally.

I won't know how bad things really are until I hear back from my father-in-law. It's just they have been so evasive about what is really going on and with the way HIPPA laws are we can't be given information without the patient's consent.

This seems to be one more step toward the end which my gut tells me is coming soon.

melmartin · Regular Joined: 11 Oct 2005 Posts: 14 Location: Oregon

Just an update.

Just found out she has 2 weeks or less. Her son still hasn't been told. Don't know if they are talking to him today or not. He will be returning to our house this afternoon.

Any thoughts about how we can help him through this? He's at such a pivitol stage in his life (14yrs old). His father is non-communicative and not as engaged with his son as I would expect. His son will need him now more than ever.

I think they may bring her home for her final days. I'm not sure if that has been decided yet or not for sure.

How can I best be there? I want to spend time with her (she and I have become close over the last 6 months) but I don't want to intrude either.

I am just so emotional today!! Is this going to get worse emotionally before it gets better? THIS IS SO HARD!!!

MarkS

I think your concern for the 14yo is very valid. He is the one who will likely be most effected by this and, being so young, he has the fewest "tools" to deal with it. It sounds like he is under the impression that she will go to the hospital for a few days and come back home, like always.
He HAS to be told.
Do you think your father-in-law is in denial? It kind of sounds like it from what you write. Somebody has to take charge here and if he won't do it then someone else has to. That boy has to be told the truth and if his father won't do it then I think someone else ought to. I'm sure your hospital would have grief counselors available. They know how to handle these things. Maybe it would be best to work with one of them, in fact I'm sure of it. Just ask the nurses. They'll know who to call for you.

I know it's hard Mel, especially at first. It's the initial shock I think. Actually though, it got easier believe it or not. As I said, the initial shock was hardest for me. The realization that this is "it" was hard to take. Then as time went on I came to an acceptance and by the time she went I was ready - well, as ready as I could have been anyway.

You asked in your first post what to expect. Again, I can only relate my experience.
Everything just continued to deteriorate. The mental fuzziness got worse, the hallucinations got longer and more frequent; in fact Mom got very upset because she started to lose her ability to distinguish them from reality. She got quite angry with herself so I told her to look at me and I would tell her what was real and what wasn't. People would come to visit and she would look at me and I would nod my head "yes" to indicate they were really there, or she would come out of a halucination and look at me and I would move my head "no". She relaxed a lot then. Sometimes her lips would be going a mile a minute, she'd be smiling, even laughing. She'd make the motions of knitting. Her hands would be going, then she'd spread the beadsheet out and count her stiches. I never tried to bring her out of the dreams because I thought, "Wherever you are Mom, it's got to be better than here."
There were periods when she became violent. She kicked one poor nurse in the face while she was trying to clean her. Other times she became very angry and cursed at everyone. She became paranoid and thought everyone was trying to kill her. She thought the food was poisoned and wouldn't eat even when I ate some first to show her it wasn't.
This wasn't her, understand, it was the disease. My sister needed to be reminded of that several times because she was taking some of the things Mom was doing and saying personally. You can't do that.
She became bed-ridden so that meant diapers and all that that entails.
She quit eating all together and slept more and more. The periods where she was lucid got fewer and further between until, even when her eyes were open, you could see she wasn't really there.
Then she went into a coma and slipped away.

Honestly Mel, I wouldn't have wanted to have had to deal with her at home. It was so nice to have the nurses and staff there to give her a sedative when she became too agitated, keep the morphine going, look after her physical needs, explain things to us as they were happening etc. And just the comfort of knowing whatever might happen, the people and resources were right there to deal with it.

Between my brother, sister and myself, one of us was with her 24 hours a day. The hospital staff liked that because they didn't have to keep looking in on her. They knew someone was with her and would call them if they were needed. I'm positive it made Mom feel a lot better too.

I don't know what else to tell you Mel.
I had to work today so I wasn't able to be here, but I checked as soon as I got home. I'll keep checking in as much as I can and if there's anything I can do to help you get through this, I'll certainly try. The next few weeks are going to be a rough ride at times but you'll get through it.

Oh, and don't let the sun go down tomorrow night without that boy knowing what's going on.

Take care Mel. I'm here for you and I'm praying for you and the family.
Mark

melmartin · Regular Joined: 11 Oct 2005 Posts: 14 Location: Oregon

Thank you SO MUCH for your kindness and support. You are being used by the Lord to bring comfort to people who need it. Take heart that your gifts are being used...

My mother-in-law and father-in-law told him yesterday. He was stunned. He thought she was coming home yesterday. My mother-in-law told me they cried yesterday and she was glad because she felt they needed to.

I spoke with her on the phone yesterday afternoon and said several things to her that I wanted her to know. I told her how much she has meant to me and the special place she has had in my life. The influence she has made etc. She told me she felt so at peace.

I have some fear for her because her belief system is in a realm I feel is the wrong path. I have talked to her in the past very informally about the Lord and told her I wanted to know I would see her again. She said she knew where she was going. She believes in past lives, psychics, and spirit guides. As hard as it is for me to understand her belief system, I do have some comfort that she seems so at peace and pray that she will find her way.

I went to see yesterday afternoon. What you described sounds very much like what is happening. We spoke some when I first arrived. She apologized for failing so fast. I told her not to apologize, it was ok and she had nothing to worry about anymore. I asked if she wanted to see my daughters. She said yes, but she didn't think they would make it in time. She then drifted off. She spoke, laughed, smiled while asleep. Her breathing was irregular. When she did come to it was very brief and she had a difficult time articulating her thoughts. She would speak one word, then drift off again. Sometimes she would open her eyes and look at something beyond what we could see. When my sister-in-law and I left, she told us to behave ourselves and said goodbye.

When we got home my father-in-law and my 14 yr old brother-in-law were at the house. They acted like everything was normal. Like they were just over for a visit. I felt upset because I feel like someone should be there with her. She seemed so comforted when she would open her eyes and see a familiar face. Even though her waking periods were brief, she would see us, smile then drift off again.

While I was at the hospital hospice came. I have a question. She says she wants to stay at the hospital. The hospital says that generally when they are only providing comfort care the insurance forces them to move the patient to another facility or home. She REALLY wants to stay where she is... She is concerned she won't recieve the care she needs at home and says she is comfortable at the hospital. Is there a way around that?

MarkS

I'm glad they told the boy. That has to be a relief for you. Try and stick close to him if you can. He needs someone he can talk to about what's happening and it doesn't seem his father is able (for whatever reasons) to be there for him right now - and that's understandable. I'm not being critical. The lad probably hasn't really grasped what this means yet but it could hit him all at once and it would be good if someone was there when it does.
Another thing you could do is try and make sure he's included. At times like this the children can get pushed into the background (unintentionally). I think it would be great if you could watch out for him a bit and try to make sure that doesn't happen. He needs to know he's part of it and just as important.

I'm also glad you had the chance to talk with her and tell her what she's meant to you. I've heard so many people living with regret because they never got to say those things to someone they loved before it was too late. Maybe you could try and arrange for the boy to have some time alone with her too so he can do that. Assure him that even if she's sleeping she will hear him and know what he says.

You said, "She seemed so comforted when she would open her eyes and see a familiar face." Absolutely. Mom's eyes would snap open sometimes, she would sit up and look around but as soon as she saw one of us sitting there she would relax and lay down again. It meant so much for me to be able to be there for her.

I can't answer your last question about moving her out of the hospital. We have a palliative care unit in the hospital here so that never arose with us. As I said before though, I wouldn't have wanted to try handling this at home alone. I guess you'll have to look at the options and see what would work best for the family. She certainly can't be left unattended at this point though and I'm sure you wouldn't want that for her anyway.

Don't forget to look after yourself here too Mel. You have to eat and you have to sleep to stay strong - and of course, prayer. Take a bit of time now and then for yourself.

I'm here for you.
Mark

melmartin · Regular Joined: 11 Oct 2005 Posts: 14 Location: Oregon

Thank you again for your kind thoughts and insight.

We found out she can stay at the hospital. I'm so relieved!!

My brother-in-law is going to speak with his middle school counselor today. I'm so very glad. I think he's established a strong relationship with her and right now he just needs someone he can talk to about his feelings.

All seems to be progressing in the right direction. My father-in-law is taking care of some thing at the house (returning the oxygen equip, etc) and said he will visit her later this afternoon. He said she was resting comfortably last night when he left. He said they've been very good about keeping up with her pain medication. I asked if there was anything I could do and he said he thought they had eveything under control. I'm ok with standing back and letting them handle the things they feel they need to on their own.

I'll keep you posted

MarkS

Oh good!

I'm glad she can be in the hospital, especially when she has expressed that's where she wants to be. Thank God for that.

School counsellor - I never thought of that.
A bit of faith, a bit of prayer and the answers come eh?
I'm really glad he's got someone to talk to. I hope his father can talk to him too eventually.

I should mention I'm not doing this entirely on my own. There's a dear friend of mine, a little French nurse living and working in Holland, who is reading this over my shoulder (in a cyber sense) and helping me out. She is also agreeing with me in prayer for you, your mother-in-law, and the whole family - so thank God for Corine too.

Please do keep us posted.

melmartin · Regular Joined: 11 Oct 2005 Posts: 14 Location: Oregon

She passed away last night. It was more difficult than I thought. We were at the hospital when she passed, and I went in with her for a little while but she seemed to be struggling and it was just too hard for me to be there. My father-in-law and brother-in-law were there on both sides of her when she passed. I'm glad she wasn't alone.

Now comes the long healing process... It's still hard to believe its over. It all happened so quickly. Right now everyone seems to be in shock.

MarkS

Wow, that was fast. I'm sorry Mel. I'm not sorry that it was so fast because for your mother-in-law that was a blessing (trust me on that) but I'm sorry it had to be this way at all.
May God bless you and strengthen you and the family and give you all peace and comfort.

Lana8

I am so sorry for your loss. God bless you all.

melmartin · Regular Joined: 11 Oct 2005 Posts: 14 Location: Oregon

Thank you for your thoughts... I have so many conflicting feelings and the memory of her struggle at the end is difficult for me to come to terms with. I guess I expected the end to be less traumatic since she seemed to be so much at peace with everything. Everything seemed to happen way too fast. I know it is a blessing things went so fast for her I think it is more difficult for those left behind.

I just feel so sad and helpless right now.

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