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chemo no longer available to Mom


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Our appointment with the doctor brought this devastating news. When the doctor came in he sat down and began to review all the options we've tried the last 22 months. He then told my Mom the cancer is in both lungs and is taking over and that her body couldn't handle the side effects of any other chemo. He also told her that he guessed it would be in less than one short month.

I'll never, ever forget the look on her face when he told us this. His only suggestion was to call in hospice to make her comfortable.

We called them yesterday and they delivered a bed which we set up in the living room and other equipment to make things easier on her.

Just in the last few days there has been a drastic change. Her body is shutting down but yet her mind refuses to give up. She has always had the gift of gab and just never stops talking. Now, she is so lost in her thoughts. She shakes her head alot and says out loud "What are we going to do now?"

How do you talk about death when she refuses to accept it? How do you give up when she hasn't given up?

I never imagined how painful this disease could get. I feel so hopeless and watching the cancer take over hurts like nothing has ever before.

I did ask the hospice nurse if she could prescribe something to take the edge off....so her mind could be at ease if only for a short time. She prescribed Ativan. She finally got to sleep about a 1/2 hour ago and my stepdad just ran to pick up the prescription. As soon as she wakes up, I'm going to give her this and hope it will bring some relief.

She did eat a tiny bit for breakfast, but the hospice nurse told us to not try to force her to eat so there have been no fights regarding food.

This part of the journey is so new and so foreign to me. It just feels like my heart is being pulled apart piece by piece.

If anyone has any suggestions of something that I could do to make things easier for her or anything that has worked for others who have walked this terrible path, I would so much appreciate any help or advice anyone can offer.

Warm Hugs,

Melinda

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Melinda,

I'm so sorry that you have to deal with all this pain. I totally could relate to what your feeling, when they told my Dad there was nothing left to do the expression on his face will haunt me forever. Today is 9mts since my Dad passed and I think about that horrible day all the time. But I do find comfort in the fact that I told him how much I LOVED him every chance I got. so please let your Mom know how much you love her and that everything is going to be OK. The tears are just rolling down my face so please excuse any typos.. :cry::cry:

(((HUGS)))

Love, Michele

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Melinda.

I am sooooooooooooo with you. It is so sad that our moms have had to endure all of this fight only to be told there is nothing else that can be done. It devastates me to know how hard mom has fought and this is the result. Don't get me wrong-I am thankful for all of the time we have had together, but I am the most sad bc I can't help my mom now. My mom is in complete denial that she is dying and I just allow that. On one side, why should she accept she is dying and be depressed? On the other, if she does not accept this, she will not be at peace with the next stage of her journey. I feel for you. I understand. We can try to help each other...

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I am so sorry for what you and your family have in store. It is so difficult not only for us but for our parents. No one can believe what is happening. Just find peace, the little you can find, that your mother will not suffer. It is us who will begin the suffering, but her pain will end and she will no longer have to fight.

My prayers and thoughts are with you and your family through this ordeal.

God bless you all.

Cathy

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(((Melinda))),

I have no words to comfort you right now or any expert advice to offer. I am just so devstated that this is the news. I guess I was hoping things would remain status quo and all would be right, ya know? I am so sorry you are facing this leg of the journey. I can absolutely imagine those words..........what do we do now?? They would probably be mine as well. I can only offer prayer that your family will be provided the strength and courage to manage the course. Plese know you will be in my thoughts and prayers. Come here often to allow us the privilege of trying to lift you up, Melinda.

XOXO,

Kasey

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Guest dedgewood

my heart goes out to you and your family! be proud of how hard she has fought. that in itself is a great accomplishment. she is lucky to have you for support and to be there with her at this time. just try to enjoy your time together as much as possible. there are good things that come out of these terrible terrible life situations that make us all stronger. wish i could be more help but it sounds like y'all are doing exactly the right things for her.

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(((Melinda)))

I am SO sorry that your family has arrived at this heartbreaking point of the journey! It is indeed a scary, new and foreign part of the journey.

Like your Mom, my Dad was not ready to "give up" or accept that death was the next logical step in his journey. In early May he was referred to hospice but refused it saying "I don't need hospice, when I do will will discuss it but until then don't bring it up again." I think he really felt that hopsice was giving up and he didn't want any of us (or himself) to do that! Unfortunatley by mid June it was clear that we were out of treatment alternatives and I told Dad that he/we needed to think of hospice not as giving up - but rather as an alternative way of continuing to hope and live. No more struggles with treatment complications, hospital stays that produced the same results time after time, no more doctors visits that he physically could not manage very well...hospice care would finally bring him (and us) some much needed peace and the ability to focus on "living" and not treatment. If he found that he was strong enough to go back to treatment or just didn't feel that hospice was the right choice we could always say "no thank you" and try something else. After this conversation, he agreed and he entered a hospice home which I honestly think did bring us all the sense of peace that we longed for. Once in the hopsice house - neither we nor the staff (who was remarkable!) ever discouraged or diminished Dad's amazing senses of hope. In fact, the day before he died one of the nurse spent over an hour with Dad and I "planning" Dad's return home. We discussed what would be different at home, how things might work or not work, what obsticles there would be and what SM might think of the idea of Dad being at home. But never once did anyone ever (even in a small way) do anything to take away his hope!

As we had throughout his illness, Dad and I talked about death not from a imminent prespective, but rather from a in the future prespective. This seemed to allow Dad the comfort level that he needed while not make either of us feel like the other was giving up. It allowed us to have the discussions and plan the things that we needed to without it all feeling so overwhelming and emotionally raw. I found that I always had to start these discussions (and was the only one that he would talk to about death)and had to limit the length of the discussion to remain in Dad's comfort zone. We had many "small" discussions and only talked about one specific thing each time. When one or the other of us would become emotional Dad would quickly end the conversation so I had to make sure to keep my emotions in check during these talks...but it worked for us.

The eating or lack there of issues was one of the hardest things for my family to accept! It seemed so counter intutative for anyone to be telling us not to "encourage" Dad to eat. He had gone from a tad over 170lbs to less than 110lbs in a little under a year and we thought that feeding him was the only way to keep him alive. We had several disucssions with the hospice staff (and they gave us some good printed material) on this subject. They were wonderful about helping us to find other things (changing his bed sheets, helping him shower, tiny spoons of ice cream, message, dipping his feet in the pool etc.)that we could do to "care" for Dad other than encouraging him to eat. The second day Dad was in the hospice home I had to take him to the surgeon's office to have staples removed and the surgeon was visibly shocked by how much wieght Dad had lost in the last couple weeks. He too "encouraged" Dad to eat as much as often as he could. On the way back to the hospice house, Dad turned to me and said, grinning ear to ear..."you know, they don't force me to eat at the hospice house. They offer but they don't force... I like it!" I smiled (holding back tears) and told him I was glad that he was enjoying his stay there and that he could have anything he wanted...he only needed to ask!!

As bittersweet and short as our time in hospice was...we had some special moments there that I will always treasure. I hope that your family has the opportunity to make some wonderful and meaningful memories too!

You and your family will be in my thoughts and prayers!

Cindy

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I am sorry about your Mom. I know it is just devastating. My Dad has been gone for 11 months and I can still remember like it was yesterday, that feeling of helplessness. I still get this feeling that I can't catch my breath when I think of everything that happened and loosing him. Seeing my strong Dad just get weaker and weaker was unreal. Dad was at home and we had hospice nurses come in towards the end. The nurses had more experience with things like moving positions, administering meds when my Dad could no longer swallow pills. It was very difficult to see my Dad refuse food and not give him anything to eat. The nurses said not to force food because that could make my Dad feel worse or even cause more problems(pnuemonia, infections). We tried things like high calorie nutrition shakes mixed with ice cream, farina, yogurt. My Dad liked to have his back massaged, and he liked to have his hair brushed, face shaved, and nails trimmed. It was hard to watch the nurses administer medications. Towards the very end he was taking just morphine and ativan. I wasn't sure if they were overmedicating him because he never spoke or woke up for a week until he passed. I constantly asked if they were giving him too much or maybe he didn't need his meds at that time.(they said they could tell by the way my Dad's face was tense or not if he was in pain). I never wanted my Dad to feel alone, we were always with him and I constantly told him how much I loved him.

Thinking of you,

Jackie

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Melinda---Oh how I remember!! At the time we get through it somehow, because we have to. I rejoiced when my mom finally let go, and went to be with her loved ones. I sometimes feel guilty for this but I was so thankful that it was over for her. I spent all the time with her that I could. I was at the hospital 23/7. I took an hour to come home and shower. I told my employer that I needed to be there and they totally understood. I would not do anything differently. I want you to know that you and your family are in my thoughts and prayers and if you need to chat you can PM me and I'll gladly give you my phone number. This will be one of the hardest things you'll ever experience. But, remember to take care of yourself. Letting go is sooooo hard for me.

Prayers and hugs

Connie

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Oh, Melinda...no...

I loved everything Cindy had to say about her dad's experience with hospice. Her approach to it with her dad seems to be a very gentle way of proposing the idea. Of course no matter what, we all have a thought in our minds of what hospice is--"the end," no more treatment, giving up, what have you, and this is so hard to try to convince yourself--let alone your mom--of otherwise.

I just am so very saddened to hear that things have come to this. I don't know where exactly in Chicago you are, but you probqably live less than an hour from me, and if you need anything, a shoulder, an ear, a hug, a ride, babysitter, dinner, grocery shopping, anything...I am here. And I can be THERE in a heartbeat.

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I am just heartbroken for you... Just heartbroken.

There is nothing I can suggest to make things easier. No matter what you do they will be hard and they will hurt, but they will also be so precious that even though the memories of these days or weeks or months will hurt to dredge up, you will... because somehow even through the hardness they are a journey shared with your Mom.

Sit with her as much as you can. Brush her hair, rub lotion on her legs. Sing songs to her. If it is something she would enjoy read her scripture.... Talk to her, touch her, and just love her.

I'm praying for you all and wishing that this will be as gentle as it can be for each of you.

Val

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Melinda,

So sorry to hear about your mom. It is just so devastating to hear that there is nothing more that can be done. My prayers are with you and your family. The hospice people are wonderful, they put the focus on living rather than dying. Their goal is to make the patient's life as comfortable and fulfilling as possible. My son entered hospice at the end of his journey and although he was totally blind and too weak to participate in any of the activities they offered, I know that he was comfortable and at peace. I pray that God in His mercy will make this journey comfortable and peaceful for your mother and your family.

God Bless,

Sharon

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