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AnOnlyChild Asked January 2015

Mom is under Hospice with dementia. I want to ask her if she has anything we should talk about but this seems harsh. Advice?

She knows who I am but does not realize I visit her at least 5 days a week. She barely easy and drinks but she just will not " give up". She can no longer walk (2 yrs now) is on morphine for severe osteoarthritis pain, halidol for hallucinations and outbursts and sleeps most of the time. I am torn between talking to her about why she might be hanging on and coming right out and asking her what her intentions are about eating, etc. the nursing home staff encourages her to eat even when she says she is not hungry. She has a health directive that says no feeding tubes, etc. Any advice on this sensitive matter? It is so difficult to watch her just waste away slowly and just exist.

freqflyer Jan 2015
If your Mom has dementia, chances are she might not give you a straight answer if you ask her anything about dying. I have gone back and checked out previous Questions you had posted, oh my gosh, what an emotional roller coaster ride you have been on.

I would just let Mom be, don't ask her any questions, if she doesn't want to eat it's her body telling her not to eat. Just let nature take its course, as difficult as it is to watch.

OldBob1936 Jan 2015
I sympathize with your dilemma....It may be a question for which there is no answer....I agree with freqflyer to not talk about the issue...

We do not know the exact time when our respective trails of life will end, but we do know that we are a lot closer to the end than the beginning..

You may want to consider praying aloud in her presence along the lines of "Dear God, mom is struggling so much....We know she will be coming home to you some of these days and we thank you that you have a place all prepared for her and that she will not have any more pain or confusion. Thank you for our wonderful life together....She is such a wonderful mother. Amen"..

Hearing such as that may somehow get through to her...Also soft music can often make one less agitated....Perhaps you know of some of her favorite songs over the years..

Kind Regards,
Bob

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Gigi11 Jan 2015
Perhaps this is the time to express yourself while she's still here -- to thank her, say how much you love her, talk about happy memories and reassure her that everything is okay. Blessings to all concerned for a peaceful transition.

petratek Jan 2015
Unfortunately, I have been through a case similar to yours, and I feel your p[ain. My brother was under hospice care for five weeks before he passed away recently. During his last 30-35 days he lost apatite for food. All what h used to ask for was water. With dementia, and at a certain point, the brain stops sending messages to the stomach that he/she is hungry.
I hope your mom's case is different

May God bless
Elias

tooyoung Jan 2015
I used to work for a hospice in administration. I remember the nurses saying that sometimes they stay because they are waiting for an event or someone. The deaths seemed to slow down at Christmas and then just after, there would be many. It was as if they didn't want to ruin the holiday, in the present or future, with a death. Sometimes they'd hold off dying until a loved one could arrive to say goodbye. Then sometimes they just wanted to know that their family would be alright and that it was ok for them to let go. I'm surprised the hospice staff isn't helping you with this. Ours offered spiritual support for whatever your belief system, with no judgement, and the social workers were there for emotional support for the family too. When my dad had a stroke and was unable to communicate, hospice had a chaplain who came, prayed with him, and sang his favorite hymn. If you haven't asked the hospice to help you through this, then you should.

thezookeeper Jan 2015
Pam, you got it right again. I don't understand why people are so afraid of talking about reality or all the folks who said not to discuss it. I had one of the best conversations of my life with my dad not long before he died, and the conversation started something like "Dad, I think you're ready to let go and might be hanging on because of all of us, and I want you know that we will all be ok. Is there anything you might want me to do for you, that you haven't already asked?" I'm glad I did, because just about everything we were doing or were going to do didn't quite fit those wishes. He had his advanced directives, POA, will, etc, but there were still a lot of things none of those documents covered, and we would never have known, if I hadn't asked. And he did have some unfinished business he wanted taken care of, but didn't know how to ask for help with it. A few days later, he finally let go, and I truly believe it was because he somehow knew all those little things that hadn't been taken care of yet would be. So ask! The worst thing that could happen is for you to find something out you don't already know or think you don't want to know, and that might be a bad thing in the long run. Weird things happen when they drift in and out, and sometimes they get these very strange lucid moments as kind of a "last hurrah". Don't miss the opportunity.

meatjeanne Jan 2015
There is a saying about don't ask a question if you aren't prepared for the answer, whatever it may be. People with dementia might not answer the way they truly want, because of the disease. I agree.... tell her how much you love her, thank her. But if you want to ask her something, YOU really want to ask, then ask. As I said you might not get an answer, or get the answer you want. I just hope you don't have any regrets after her passing, any 'I should have asked her' moments. My husband was diagnosed in 2008 with Alzheimer's, lost his ability to talk, write, communicate in anyway the first year. How I wish I had gently pushed him to talk, to discuss, to let me know what he wanted. So much I wish we had talked about... he died 3 months ago. But many people don't even get to say goodbye, so I am so very glad we had these last 6 years.

pamstegma Jan 2015
We talk about what she will do when she gets there and who is waiting for her. She knows where she is going is beautiful.

LearningCurve Jan 2015
My mom is in hospice and has dementia. Oddly enough, lately she has been quite rational. She told me she was surprised she is still alive. We calmly got around to the subject of funeral and ashes. We discussed where and how without tears which surprised me. For mom and I to discuss anything calmly or rationally is rare but her wishes are now known.
Yes, ask. You may get an unexpected rational response but don't be too disappointed if you don't. One never knows.

Stressed52 Feb 2015
My mother just died in hospice care 4 1/2 months ago. She was in a nursing home and had a mysterious "accident" hitting the front and back of her head. She was NOT taken to the hospital for about 11 hours and by then had 4 brain bleeds and the doctors told us that she had no hope of surviving....she died 8 days later. She had only been in that home for 2 weeks.

My two sisters and I spent every moment with Mom at the end but because she was sedated we seemed to talk between us but did not spend much time talking to her. I regret that now, we should have been talking to her or including her in our conversations....like Mom do you remember when....happened?

The last day we were there my older sister was going crazy and left for a while and called us asking us to come downstairs and go to dinner with her. My younger sister and I spoke to Mom and I told her I loved her and that her Mom and Dad and sister and brother were waiting for her and it was okay to go, whenever she wanted. I finished by saying, "Don't be afraid Mom, its okay." We left for dinner.

When we returned we were suiting up because Mom had MRSA and I had forgot and was stroking her hair saying little things to her. I watched her take her last breath and not breath again. It was like she waited for us to return and then she left.

I would talk to your Mom, maybe reliving things you did in the past. If you feel it is okay you could tell her that whenever she wants to go, it is okay, you will be fine, you love her and always have, etc. I do not know your Mom's condition nor how long she may have but you will have to "feel your way around" this topic. Whatever you do, keep talking to her and do not let her go with anything left unfinished between you.

Do not talk about her condition with her doctors in her room and do not make phone calls to others talking about her condition or how you feel. You have no idea what she is hearing and understanding. We always made sure to step out of the room for these conversations as they told us that the hearing was the last to go.

Good Luck and God Bless You

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