How do you tell an AD person they are dying? - Alzheimer's Disease & Dementia Message Board

katherine714 · 12-12-2003, 08:46 PM

My mother in law was diagnosed with terminal cancer yesterday. It has spread to her liver and pancreas. She is 76 years old and is about mid way through AD.
My husband is adament that she be told that she doesn't have much time left. Even if she forgets it, at least during the time she knows it she can make her wishes known.
The remaining siblings (there are 4) don't want to tell her. I'm not sure of their reasons other than she would forget and wouldn't be able to offer any meaningful decisions about her own care. I also think they don't want to burden her with any bad news, especially if they have to repeat it to her.
She's actually much happier with AD than she ever was without it. Besides the obvious physical problems (like incontinence), she's actually a much nicer person (don't get me started) than she was before. She's always happy and cheerful now.
No one wants to consider treating the cancer due to age and the disease. Is it wrong to extend life when it's at this stage?

I am not in a position to offer anything other than reasonable advice to my extended family, but I feel I should offer at least that and from a moral standpoint, I haven't a clue. I'm a steadfast "quality of life" person, I don't feel like I can offer that here when mom is so "happy", or is that all an illision?

Anyone else been here?

Beginning · 12-13-2003, 05:57 AM

I'll be interested in learning how others have chosen to handle this situation. One of the ladies that I work with has a Mother-in-law with mid-stage AD, who is being treated for breast cancer. I was surprised that her family had chosen to aggressively treat the cancer. I've assumed that it was one of the "what if" situations that the family had discussed when the initial AD diagnosis was made. My husband, for example, has made it clear that he does NOT want any treatment if he is diagnosed with any other terminal disease in addition to AD -- he just wants to be made as comfortable as possible, and to let the end come as soon as it will.

Your Mother-in-Law may have made her feelings about AD & death and dying known to her children, and they may feel that they're honoring her hopes to have a peaceful end by not telling her about the cancer. They may also be hoping to keep her from being afraid of dying -- especially if your family has had other cancer deaths which have been frightening or difficult for the family. For many people in their 70s & 80s who have lost relatives or friends to cancer, cancer is the scariest of all diagnosis.

By now, your Mother-in-law may have already put her affairs in order and talked to her children in anticipation of the day that she would no longer be able to do this, so the knowledge of the cancer diagnosis might not change anything except to add to the burden that she is carrying.

On the other hand, your husband sounds very respectful of his Mother. One of the things that my husband and I are finding very frustrating about AD is the fact that so many people are treating him as incompetent (and he was just diagnosed as early stage) -- even the doctors now direct their comments to me, instead of him. To the extent that she's able to understand her condition, I believe that it's respectful to let her know what's going on.

Hopefully, the family will be able to come to a consensus as to what is best for your Mother-in-Law, and how to keep her as happy & peaceful as possible as she faces this final tragedy.

katherine714 · 12-13-2003, 10:36 AM

I don't think there was any prior discussion. Mom is in denial that she even has AD. Has been since the beginning. She gets very upset if you imply she has forgotten something. It's just not discussed.
The sisters are in quasi-denial. Mom was living alone up until very recently when one of her sons moved in because he's having a house built. Up until then, there were daily visits by the children to check up on moms meds.
My husband wanted to put her in a better situation, everyone else was against it, thought it was too soon.

Bettyhere · 12-13-2003, 12:13 PM

I hesitate to get into a family discussion, but since you asked: It sounds like your husband does not understand that his mother cannot understand, or else she has chosen to remain in denial, as some of his siblings. It's her choice. Even if he can get her attention long enough to get thru, does he want her to agree to cancer treatment at this point? If she understands that she's dying, what can one expect? She's not going to 'get her affairs in order' she won't gather her children around and tell them how precious they are how she loved being their mom--whatever. Your husband was right, tho, about putting her in a better situation. Many family members want to wait until 'it's time', but there's no such moment. An AD patient never asks to go into a care facility and fights to the end to stay in their home. The time to place someone is when there is no caregiver with the health, time and committment it takes to care for them when it becomes apparent they can no longer safely be left alone--and few people want to acknowledge that moment. If the situation is as you described, I don't think it will matter if he tells her or not. She'll just forget or deny, and if she does understand, then what's the point of that? She's made her choice and I guess your husband has to make his. If I were an in-law, I think I'd leave it to her children.

camachinist · 12-14-2003, 10:46 PM

IMO, your husband needs to take charge and make a decision, both as to what is told and how care proceeds. He can fight the siblings later legally if they get cranky. MIL needs hospice care so she can remain happy for what time remains. IMO, she shouldn't be told of her cancer as her cognitive center is likely blown and she would only respond on an emotional level.

As a DIL, you should offer your opinion to your husband and then support him in whatever he does and refrain from engaging his siblings, directing them to him if they acost you. Remain positive and upbeat with MIL, no matter what happens. There might still be a few gems left there for both of you. If you haven't already, read some books on AD and being an effective care partner.

Regarding housing, if you have the means to pay for home care beyond Medicare's hospice coverage, that is one possiblity. Untreated, MIL will likely be gone within a year, likely less. My dad lasted around 4 months after the cancer got to his liver, even with chemo. If hubby decides on institutional care, with or without consulting with the siblings, he should investigate and line up a facility and then take mom there for "observation" or "treatment" or "therapy". Use an appropriate lie for MIL and siblings, whatever suits your needs.

Sometimes it's better to ask forgiveness rather than permission...

Good luck!

Pat