"What shall we do about the elderly dying with dementia, losing who they are — how do we help them 'die well'?

My mom is at the end stage. She is losing her abilities to speak, to eat. How do I help her? Is it okay to talk about dying with her? I do read to her, I tell her I love her, I see her as often as I can at her long-term care home. But as she declines, I am not sure how to help her 'die well.'

I have had a great sense of healing in my time with her in this stage of life, but as I see her becoming less and less connected I am not sure what to do. How can I help her at this stage? Perhaps just being there, holding her hand, reading, I am not sure. How do we address her dying? Is it okay to talk about it? I don't want her to die without being at peace about it."

Annie Voldman, in response to "Contemplating Mortality"

We received this powerful note with searching questions yesterday from a listener in Vermont. What advice would you offer her, or suggestions on resources that would give her good counsel? Please leave them in the comments section and we'll forward on. Many thanks for your help.

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In my experience with my mother in a similar situation, I found the feeling she experienced from any activity she did would be with her for hours afterward, even if she couldn't remember what gave her the feeling. So, I always tried to make her day a pleasant one. She particularly enjoyed music and rides in the car and later, just being wheeled outside in the garden and smelling the flowers, breathing the fresh air, feeling the sunshine on her back. Even a tasty treat - ice cream or homemade pie would make her happy and while she would forget in minutes what she had eaten or done, the emotion of happiness would stay with her a long time, usually the rest of the day.

Music, in particular, can reach places in folks who are losing their language, especially old favorites.  Other sensory experiences, like favorite foods, flowers, are good as well, along with just talking, reading, etc. Reality orientation isn't usually helpful and can't be retained (ie, the fact that they are dying, etc.) but focusing on expressions of love, gratiitude, and caring can get through. Though, I agree with myvonne that saying it's okay to leave is a lovely act of compassion.

I was a geriatric mental health consultant in a past life, and these are common questions. It sounds like you are doing a wonderful job just by showing your love.

Sing to her, especially if there are songs the two of you share. Trust yourself about what you feel is needed and helpful, including talking about her death. In the end, loving her and being present to her just as you've done is profound. 

We see sadness in this, sadness at loosing our connection to our past and to those references that make our experience unique. I would opt for a more positive perspective. She is slowly being dipped into death, into universal nonlocal being. Speak to her about death, but also then about the many layers of consciousness, surely she must be tasting them already. Touch. Feeling. Sensing.Hearing. Tasting. It is only sad for those living in the past and the future; dying. It is really neither, it is becoming the wave that will break on another shore, still connected to everything.

Thank you for another, relevant perspective on this process that all of us experience and for giving us presence of mind, hope in the present. 

My grandfather is in the final stages of Alzheimer's in a hospice home. 

You said "I have had a great sense of healing", which is important because it sounds like you're doing all you can. It's a disease that kills the mind before the body passes. So while you think it's vital for your healing to visit, what's most important for her probably are comforts in line with her level of cognitive functioning: to be physically comfortable, to have physical contact, to have soft words and music and the like. I believe, and not in a demeaning way, it's a disease that returns a person to infancy where simple things bring peace.

I also want to let you know that my grandmother visits my grandfather many times a week and is beginning to show signs of dementia. Stress and desperation can make a person very sick: it's decreased the quality of life for my grandmother and initially triggered and worsened my grandfather's Alzheimer's at the early stages.

I wish for any caregiver in yours and my grandmother's situation that they know when to limit their care and heartache when their personal "sense of healing" is compromised. It's within a loved one's nature (especially for women) to be self-sacrificing for our friends and family. Just be conscious that you don't sacrifice beyond your means. Your quality of life is precious and a gift worthy of great protection too.

Finally, you mentioned "I don’t want her to die without being at peace about it". In my opinion, peace in another isn't something you can control. You can provide everything to facilitate peace (a quality care home and the basic comforts mentioned above, so long as it doesn't lower your quality of life) but you can't MAKE her feel peace. Whether you believe it's God-given or from an inner source, your mother is worthy to receive and able to find it, no matter how damaged her mind may be. Worrying about her finding it won't bring you peace or help you in facilitating peaceful surroundings for her or your family. Everyone searches for peace and I'm sure at the end of life she will be searching inwardly too. That, I hope, you can find peace in. 

music - music from her past; music that is meaningful to her; music that she loved; also bring her things she can smell and touch; these are senses she will still be the most in touch with- therefore receiving the most input from them. Reinforce the ways she has lived well; give her permission to die when she is ready

Early on when my mom was in early stages we were on her favorite spot of a beach she took us to as kids.She asked to have her ashes spread here. This has brought us both comfort and now that she is in latere stages she it is more frustrating to wait for her to decline. Recently a relative opted to use the hemlock society before she was unable to.This brings in other dialogs with the afflicted but they end it with dignity.

My mom died from a very painful cancer at a young age. At the time, I couldn't imagine anything worse...that is until my dad developed dementia in his mid 80's. This was a man that had been physically and mentally active(at 85 he would start the day goose hunting, play 18 holes of golf, go pheasant hunting and then go home and clean the geese and pheasants) until he fell on some rip-rap and hit his head while fishing.  The mental decline was so scarey for him and me.  He had never been depressed a day in his life and after about a year he developed severe clinical depression. One day he asked me, 'who would ever think that I would get depressed?' 'Not me' was my response.  He moved into a semi-independent living facility and soon into the nursing home.  The dementia continued it's ugly march. You know that old joke about the Norwegian that loved his wife so much he almost told her?, that was my dad. With his march through dementia he became so kind that one day I asked him, 'where was this dad when I was growing up?' I took him for rides to community functions and funerals of his friends.  He really liked getting out of the nursing home.  One day as we were returning to the nursing home after a funeral I had brought him to, I asked him what hymns he would like sung at his funeral.  With a panicked look, he turned to me and said, 'am I going to die?' No, not today, I replied.  Little did I know that the next day he would develop a severe pneumonia and not live to see Saturday morning.  But, we sang the one hymn that he started to sing in the car that Monday on the way home from the funeral. I was so glad that I was given that opportunity.

Music therapy can be very beneficial for both the individual struggling with dementia as well as the family who is losing their loved one to dementia.

Please just BE with her. That may be all she truly desires. Contact with those she loves so well and who love her in return. We stayed by dad's side during the last month of his life, alternating between his physical care and his spiritual/mental well being. My sisters and I did Reiki treatments on him to help rid him of past emotional, physical and mental trauma. We sat with him, talked with him, listened to his stories when he could speak, laughed with him when he could laugh. We did anything and everything and sometimes nothing at all. We stayed by his side, holding space while holding his hand. My very best to you and your mother. Blessed be.

Dying well and dying naturally are such good aims! I highly recommend the book "A Better Way of Dying" by the Fitzgerald sisters, one an emergency room doc and the other an attorney.  My dad died after a 9 year decline with dementia. I wish I had read this book 9 years ago.

When I worked with people who had dementia, I realized that they had achieved the one thing the rest of us strive for: Living in the moment. Therefore, I learned that my job with family and clients was to make each moment we had together the best it could be. They feel love, but can't express it, and they can't talk about their feelings about dying or even about living. Touch is one sense that's with us to the end; simple hand and foot massage conveys love by touching in a loving way.
Play music that you know she enjoyed--not your preference but hers; use any remaining sense of smell by using her old favorite lotions for the massage.
Because she is "in the moment," when death comes she will be ready, more ready than you are.
May you find your journey together a blessing to both of you,

Thanks for that thought as I search for more help for my advanced dementia mother who has esophageal cancer and is in her last days. I so agree on that they live in the moment. I have had her in my home for 8 1/2 months and wouldn't have laughed as much if she weren't here. I am grateful for your thought that when death comes"she will be in the moment."

I have found it helpful to ask "What would you want your own children to do for you if you were in the same state as your mother?  What would you not want them to do? "  It is easier to contemplate these kinds of questions when you are not in crisis.

Yes, do spend the time telling her all of the wonderful memories you have.  Talk to her as if you are having a two way conversation.  Tell her over and over how much you love her and that you will miss her but you will be okay.  Let her know it is okay to "let go".  Hold her hand and sing her favorite songs or play the music softly in the background.

Don't be afraid to make the hard decisions...our healthcare system isn't set up to deal with something that won't have a good outcome. Love her enough to make the hard decision when it is time.

Take care of yourself.

I agree with the suggestions of music and singing. End stage for my mom, no talking - but I would 'mimic' the sounds she made, like her own song and she would sing, "I love you" when I 'joined ' with her in this way.

Blessings to you on this path.

music.  a favorite song or singer.  pets that she loved, or if she loved animals, a pet therapist visit.  reading to her the things she loved to read or hear about.  comfort.  comforting things.  a favorite quilt or blanket.  If she is truly at the 'end stage' and perhaps has only days or weeks, she may be like my mother, who seemed to want peace most of all.  the quiet of a darkened room.  a soft and gentle kiss on the cheek.  but even the smallest physical thing seemed to pain her at the very end.  a hush.  quiet respect.  and love.  however that looks.  trust yourself to 'know' in moments.  trust your intuition.  And trust that however she was in life - if she preferred to be alone w/pain or was very private - she may prefer to be in solitude and quiet at the end.  This seemed to soothe my mother, even as I was hard pressed to accept that she was leaving.  So I sat simply and quietly with her, and journaled or read silently what comforted me, and took my meals outside her hospice room.  And she left quietly.  Her face was completely at peace after she had gone.  Her mouth was open with the effort of gasping for air.  But the rest of her face was completely at peace.  

I hope this helps.  God bless you both.

A wonderful resource is Joan Halifax's book, "Being with Dying: Cultivating Compassion and Fearlessness in the Presence of Death." http://www.amazon.com/gp/produ...

My 92 year old mother-in-law also has dementia. I have been her fulltime caregiver for just over a year now, A few months after her husband died, we moved her out of assisted living where she wasn't doing at all well, and back to the house they had lived in since their retirement thirty years ago. She has done much better in many ways, since that move, but the dementia persists and the Alzheimer's progresses, nonetheless. Car rides, ice cream and pie, and lots of naps seem to be her greatest comforts, and I make sure she has all on a regular basis.
We had one particularly revealing moment shortly after moving her back to her house. She was intent on "going home" many times a day at the time, meaning her childhood home in Tennessee. At times, when I could not take her outside or allow her to go out alone, she would sometimes get indignant and say, "Who do you think you are?" One day, it came out as, "Who do you think I am?" I responded, "Who are you?" She answered,  "A little girl."    

We are human beings rather than human doings, you know. Just being there. Maybe music she loved at one time. But mostly, be there. We lost my father to a stroke and my father-in-law to Alzheimer's. 

This might not make much sense, but perhaps you might try sitting with your mother without having any thoughts in your mind about how things should be, or how you'd like them to be, or what you think you ought to do.  Just sit with her in a state of emptiness---which is to say, with complete inner stillness.  Let go of any desire for the situation to be a certain way.  Then, as you sit with her in this state of complete inner stillness, just pay attention to what arises in you and then say or do whatever spontaneously feels right, just in that moment.  Just allow yourself to respond to the needs of the moment, without any pre-existing agenda.  You might find that magic happens.

Just being present for any person passing is enough. There is nothing more powerful than being brave enough to just "be" there to witness/acknowledge what is transpiring. They feel it, either in body or spirit. You don't have to worry about that. Just be there

Annie, I lost my mom over the holidays, she was 85 and went very fast from the time of formal diagnosis to her death.   One thing I know from this, is yes, just being there, just loving your mom is enough.  It's all we can do.  Blessings and peace to you both.

I am a Social Worker and have worked with people dealing with dementia for quite awhile.  My father had dementia of the Alzheimer's type (he was 88).  My husband (63) has dementia due to Traumatic Brain Injury. (dementia pugelistica).  I have found both professionally and personally that the person we know and love is "still there" at least the essence of who they are--their spirit/soul.  They may not be able to relate or communicate the way they use to be able to but they are there.  Talking with them, holding their hand, hugging them, touching them, and just being there with them is beneficial.  A client related a beautiful experience with her mother about 4 days before she died. Her mother was aphasic (flat facial expressions, no communications) and had been for months.  My client would sit with her, talk with her, comb her hair and do all the things she would do as when her mother was able to respond.  Her mother never gave her any indication that she even knew who she was.  Just "out of the blue" her mother looked at her and said "Linda, I  love you, you are a wonderful daughter, thank you."  She never said anything after that; she developed a respiratory infection and died just a short time later.  Proof that the person is still in there?  It was enough for me.