I mean how do you explain what's going on with someone who doesn't remember when & why she went to the hospital. Why she was treated one time with Chemo, she was due 11 more treatments but after the one treatment it took about 3 days for the side effects to kick in. The side effects were major, she didn't talk for about 2 weeks and she didn't eat for almost a week. 11 more treatments were out of the question. It was kill her with the chemo or just let her go as comfortably as possible. We now have Hospice helping us at home, so you should know the decision I had to make. My wife's daughter has come to live with us and help out and that helps a lot. Some days are better than others, but on those better days it's hard, you wonder, although everyone, the doctors, nurses, her family, etc., agree with your decision, you wonder if you made the right decision. Then she'll look at me like what's going on with me, it's heartbreaking. Today she is acting like she's hurting, but when I ask her what's wrong she says nothing hurts, as she's holding her stomach.
I can't bring myself to tell her she's dying, but I know the Dementia is causing her to not know what's happening to her. It's all so frustrating. I Love her so much but I'm having a hard time dealing with how to answer her, I mean how do you tell someone you care about them so much, but I can't do anymore for you. And then you have to repeat this again either in an hour or two or the next day. I'm open for suggestions.
When my sister was dying of cancer, she knew it, and expressed her desire to live. I didn't know what to say, other than that perhaps her oncologist could give us some insight on options. I do know the pain of seeing someone in anguish, pain and confusion but not be able to do anything about it. I wish life were less challenging. And I wish I had a good comforting answer then, as well as now in answer to your question.
I'm sorry for your pain--and for your wife's. Stomach cancer must be very painful. I just recovered from cancer and the chemo was horrible. I will never do it again.
I was never in pain, per se, just sick, sick, sick. My DH couldn't handle the emotional side of things, so he opted to travel pretty much my entire tx. It sounds cruel, but it was better. He couldn't bear to look at my bald head and no eyelashes--I took care of myself and he didn't have to do anything. Well, he mowed the lawn a couple times.
Even tho your wife cannot verbalize her pain, she still has it. Can you get her in a Hospice program where you can keep the pain and anxiety under control? She probably cannot make her own decisions, but you probably CAN do that for her. At this stage of the disease, all you can offer is comfort care. She will notice, at some level that you are there and caring for her.
My heart aches for you. I'm adding you to an already long prayer list.
Lots of people with advanced dementia are unable to verbalize their pain or discomfort. If your wife is holding her stomach, you can assume she's indeed feeling pain there. Ask hospice to get her on a schedule of pain & anxiety medication so the pain can be controlled before it gets bad. She's approaching the end of her journey now, so pain medication is 100% warranted whenever necessary for comfort care.
My mother is 94 in January with moderate dementia & other health issues I won't go into here. I find it a blessing myself that she's unaware of a lot of things going on around her lately, otherwise her normally high anxiety would be amped up through the roof. If she were to get cancer, as her medical POA and only child, I would definitely refuse chemo treatments for her as well. Dementia is a terminal disease as it is. Why try to prolong someone's life when they're already in this condition? THAT is the question to keep asking yourself when you wonder if you're doing 'the right thing.' You are. Life is finite. We all have a certain chunk of time here on earth and that's it. None of us can change that fact for another. You allowing your wife to end her journey with dignity & grace is the kindest thing you can possibly do for her. Hospice comfort care at the end is also an act of love like nothing else.
I am so sorry you are going through such a traumatic time and having to make gut wrenching decisions on behalf of someone you love. Just know that you're doing the right thing, even though it may not FEEL that way all the time, and that God has your back, my friend.
Wishing your wife a peaceful end to her journey with no more pain and suffering. Bless you both.
It's tough, I know all too well. I'm glad that you have your wife's daughter there to help, along with hospice. Just spend as much time with her, holding her hand and letting her know how very much you love her, as there will come a day when you'd wish to be able to do just that. God bless you.
I think you were so right in making the decision for no chemo. There is no reason to take that and have the end be even more tough than it already is. It is very unlikely that chemo would keep her here longer, and to suffer like this, to proLONG the suffering? I cannot begin to imagine a good reason for that.
I would speak with doctor about time frame expected; I would speak with hospice about giving all the drugs possible now to keep your Mom below a level of suffering, even understanding that this might hasten her death by days even weeks. There is no upside to keeping your Mom going like this. There is nothing to be gained but more torment. I am 78 and an old nurse. I am telling you right now that were I your Mom I would hope against any hope that you would keep me "snowed" with the good drugs, medicated below the level of distress and dreams. That would be my personal wish.
You are in charge now and acting for her and I think that you have made all the RIGHT decisions in stopping the chemo and bringing her home on Hospice. I am so dreadfully sorry for the pain. I fear death none whatsoever, but I greatly fear pain that has no relief.
Related to this, I'm a big advocate of Living Wills (and if your wife didn't create one, I'm not judging this at all). Creating a Living Will with input from our doctor creates useable guidance for your medical team and your LOs. Most people aren't aware that those generic Living Wills ("My 5 Wishes" or something like that) is basically an unusable document, as told to a client of mine by countless doctors. My client is in the process of rolling out a more detailed, digital one. The more detail, the more specifics, the better. And it must be updated regularly and your LOs must have the most recent version. This is the only way to stay in control of your care until the end, and spare your family from the anguish of second-guessing their decisions on your behalf.
I can not say enough about Hospice.
They were Angels that came to help us.
I got the supplies I/we needed as well as support and education that I needed.
The important thing was they truly cared about my Husband and did everything in their power to make and keep him comfortable. It truly was one of the best decisions I made in caring for him.
If you think she is in pain please contact Hospice. It is their goal to keep their patients comfortable. If your wife can not express in words if she is in pain Hospice has ways to help you to determine her pain level.
Your wife will feel comforted when you sit by her side and hold her hand. When you talk to her, Maybe read a book to her, Listen to music, Just being there when she is scared, hurting might do as much good as medicine.
Telling her over and over is not going to work. Tell her that she is safe, you love her, and you will take care of her. That is what she needs more than the answer to "what's wrong".
((hugs)) Give your step-daughter a hug as well. this has to be as hard for her as it is for you. I am glad she is helping.