My wife who has had Dementia for about 7 years is now dying from stomach cancer. This is tough to deal with. Any suggestions?

Dear BlueMoon. I am so very sorry for your pain. I have so much empathy for you. I know you did not read my post where I said my Mom’s dementia was a blessing for me. It was not extremely bad, she did not know what day it was, who the president was, or that nobody stole her bananas, but it was truly a blessing when she was diagnosed with cancer in June. She did not remember the falls, the pain nor the seizures. Every time she saw me, she said good morning, like it was a new day, even if it was 10pm. She would never take medication, so when I noticed she was holding her stomach, I asked if she wanted Tylenol or something a little stronger. She was able to tell me and it does not sound like your loved one is. Mom also had a living will, so my decision for no chemo was not as difficult. It was me that was in pain, I felt guilt and horrible pain watching her get weaker every day. I tried telling her that she had cancer, but she refused to accept it, so I stopped telling her, as she would not remember anyway. My only advice is to accept this blessing of dementia. It is you and your daughter who are in real pain. Hospice was a huge help to me for guidance, if it is available. I called almost daily and some triage nurses talked for an hour to me. My parish pastor was also a huge help. I wish you and your family peace an comfort. You are truly in my prayers.

You sweet man.

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.

BlueMoon, I don't have any suggestions at all, and I wish I did.   Your post is so emotional, so poignant, that I wish I could offer insights.   

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 think it's a bad idea to tell your wife she has cancer or to share any bad news with her of any kind. There's no point in it, really, because she will just forget it and you'll have to keep repeating the same bad news over & over again. It's like having her relive the trauma repeatedly, which is cruel for a person with dementia. The best thing to remember is..........don't apply your rules of normalcy to to this affliction of dementia which knows NO normalcy. Whatever is required to keep her calm and peaceful is what you need to do. If that means you lie to her, fine........lie to her. Whatever it takes.

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.

Please don't waste your time second guessing your decisions. You know deep down(as does everyone else), that you are doing what is in the best interest of your wife. And for that, you are to commended. It isn't easy though, I know. My husband was under hospice care in our home for 22 months, and on Aug. 5th, I was told by hospice that my husband would be dead in 3 days. Well long story short, he lived until Sept. 14th. In the early weeks of his 6 week dying process, he couldn't understand why he was having so much pain, and would try and ask me. I too, didn't want to have to tell him that he was dying, so I would usually answer with something like, well your body is just starting to shut down, that's why you're having so much pain, but when he continued to ask me over and over, I finally told him that it was because he was dying. I could tell by the look on his face that he didn't believe me, and I was ok with that. It wasn't until about 2 1/2 weeks before he died and went into a coma, that he woke me around 10:30 in the evening to tell me that he was dying. It was then that I knew that he finally knew.
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.

What a sad and lonely road you’re traveling. I’m so sorry. In a much different set of circumstances I walked through hospice care this past summer. I’m very glad you’re receiving this help, never hesitate to ask them questions and reach out to them with any concerns. Hospice should always guide you in keeping your wife comfortable, that’s what they know and do well. Your wife is blessed to have you in her corner and I wish you both peace

Did you speak to hospice? Do you have a prognosis in terms of time? I am not certain why pain medications and relaxants are not now being given to keep her below the level of pain, and quite honestly ANY distress. She is dying. There is no reason to tell her this. Why should she have to be told when there is nothing she can do about it and when she cannot likely even retain the information. And were she to retain it, to what end should she understand that she is dying? Is it not better for her to think she has stomachache and it will go away?
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.

Bluemoon, there is no wrong answer in your situation. If I were in your shoes I would tell my LO whatever "therapeutic" fib worked to help me cope and kept her calm. This is not immoral or unethical in any way and you are not betraying her trust. I will sincerely pray for peace in your heart as you complete this journey with her.

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.

BlueMoon22,
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.