Mom is at the ‘beginning of the end.’ As she has dementia, she doesn’t seem to have any idea that she is sick, let alone dying! She is oblivious about the reason a hospice nurse comes to the house twice a week. We talk about her condition and issues with her there, but I don’t think she can understand any of it anymore. She is miserable, but still really ‘functioning’ day to day. She is not yet bedridden, but I think that is coming in the next few days. She doesn’t LOOK and ACT like someone that is almost at the end when people are around. When it is just us, she is not responsive, can barely function, and seizes frequently. It’s like she is holding it together for show. She can really be stubborn when she wants to be. This all makes we worry that she is going to fight passing away because she is always trying to keep up the facade, especially since I don’t think she even understands what is going on? If I just try to tell her directly, she will deny that any of it is true. How do you help someone find peace and let go when the time comes, when they can’t understand anything about their condition? I understand at some point, she will probably have to be heavily medicated for pain relief. I feel like if she can’t make peace with letting go before she ends up in this condition, she will hang on much longer. I don’t mean to sound heartless. It’s not that I want my mother to pass away. I just don’t want her, or us, in agony as we go through this process, any longer than necessary. Has anyone else ever faced this kind of dilemma?
We are already using the comfort meds, such as lorazepam, seroquel (to sleep) and sertraline (to help with her anxiety/depression)
We have to sneak morphine into her in food, when her pain is strong enough to require it.
Mom’s seizures come from the area of her brain that has been damages by the vascular dementia. Until they become so overwhelming, we aren’t going to medicate for them. They are not severe, don’t cause her pain, and she doesn’t even remember that she has them, so why knock her out with meds? They just used to frighten me. I’m so used to it now, it is just routine.
After a long conversation with our hospice nurse, and a counselor friend (who worked hospice & grief counseling for years), both indicated that they felt that with the signs she is showing, we are starting the end. Now, we all know this process can happen in a day or in a month, or longer! No one can tell.
We don’t tell her she is sick, nor have we even intimated that she is dying. It just kind of struck me yesterday that although we have all come to accept this, she doesn’t have any clue! It made me wonder if I should try to explain to her.
I think I agree that she won’t understand, won’t remember, and will only make our time together more unpleasant.
We are just very matter of fact about the nurse. We just say, “The nurse is here to check you out!” She goes along with it.
Thanks everyone. I appreciate your thoughts on this!
I want to say how sorry I am you both are having to travel this road. I'm sure, with hospice, your mom's needs will be met. There are medications for pain, anxiety, excess respiratory secretions, bowel problems, etc. and many items like hospital bed, oxygen, commode, etc.
May I ask why she's seizing? Does she have a brain tumor or epilepsy? Is she getting any medication for preventing them or treating them?
I know you want to "prepare" your mother but, with her very limited cognition, that's not what you're going to achieve. I would stop pushing the information and let things be.
You could say the nurse is here to do a house call to check on her. Tell her the doctor ordered her visit. That's the truth.
Also, even if she had all her mental faculties, many people aren't ready to hear they're dying.
So be kind and just go through the waiting with her. Her time will come when it's supposed to. You can't force a person to accept their death nor help them "let go". I think you're trying very hard to accomplish a noble desire but she's not able to grasp it.
Who told you she's actively dying? Hospice? As I understand it and have seen it, a person who is still walking around and can speak to you is not actively dying. Ask your hospice nurse to explain the changes in the body as death approaches.
As a former hospice nurse (I gave it up this year to only have one job), no one can tell you exactly when a person will pass. I've seen patients hang on for weeks when I thought they'd go much sooner.
I have also seen patients wait for their caregiver and/or family to leave the room or house before they pass.
Try to not focus on this one aspect and enjoy the time you have left with her. Nature takes its course whether we prepare or not.
My heart is with you as you face the days ahead.
I would probably just tell her she's ill, doesn't feel well. and that I hope she feels better soon. and that we will take care of her. make sure shes comfortable as possible.
towards the end of my dads life. there was nothing I could really say. he had that blank stare mostly. and spent the last month in a bed provided by hospice. while I did "talk" ...it was mostly. hi dad, it's XXXXX. we are here. moms here. XXXXX is here.
making sure he was covered up. making sure his lips weren't too dry. etc
Given her lack of cognition, I wonder if it's even appropriate to try to explain to her.
What I suspect is that her health will decline to the point that she's unable to "hold it together", and the bodily decline will overcome her mental and physical abilities to understand what's going on. At that point, the questions you raise may become moot.
I would really discuss this with one of the hospice staff to get their opinion; they've seen this kind of situation more than we have, and might have some suggestions.
I wish you peace, comfort and solace throughout the days to come.