There Is No Pattern~ Dementia At End of Life

Dear Barbara, My mom was diagnosed with dementia in 2016. She is now in an assisted living facility. Within the past month, she has taken a sudden decline. She didn’t want to get out of bed, lost her appetite and stopped saying much. While this was happening, her roommate, also with dementia, who she had lived with since 2018, was in hospice and rapidly approaching death. My mom had to go to the hospital due to some of her vitals being off and she had a UTI. Her doctor put in the orders for hospice and she was admitted into the program. Then her roommate passed away while my mom was in the room. Since then, she seems to be eating some of her food and talking a little more, but still won’t get out of bed and has some sores from lying in bed. She also can’t do anything on her own as far as toileting and such. Since she has been up and down bad the past month, I just don’t know if it was just her roommate being sick that caused her decline or if my mom herself is just having a rallying moment. Any advice?

Understanding why dementia does what it does is challenging and it generally outplays us every time. Dementia just doesn’t play by any rules. 

Most diseases have a pattern. You generally know what to expect. With dementia there seems to be no pattern, at least as far as approaching death is concerned until they have entered the actual labor of dying which can be a couple of weeks and certainly days before death. 

Your mother’s roommate's decline and approaching death could have had an affect on your mom’s behavior and decline. We don’t know what she was aware of, could perceive or understand about the activity in her room with her roommate. I believe thoughts are things, that the energy of others affects us, BUT that was not the only cause of your mother’s decline.

Your mother’s disease will naturally continue to progress, no matter what or where she is. Bottomline: nobody really knows why people with dementia do what they do, why, or even when they progress the way they do. 

What we DO know is the dementia will progress. Your mom will reach a point of total withdrawal and not eating. Watch the eating and not eating, that is your guide. 

Your job: love her, visit even if she doesn’t seem to know you, talk to her even if she doesn’t seem to understand. Use the time you have to bring some sunshine into her life in the manner that she can receive it.

Something More about... There Is No Pattern~ Dementia At End of Life

I suggest that families whose loved one seems to be close to death read my booklet, HOW DO I KNOW YOU? Dementia At The End of Life as well as GONE FROM MY SIGHT,  to understand what to expect during the dying process.

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barbara karnes

Hi Margarita, from your description it does sound like your mom has entered the dying process. Your description of not wanting to eat, sleeping more and withdrawing all say her body is releasing its hold on this earth. How long will it take? I don’t know. A lot depends on her body weight (if she is thin the process will be shorter than if she has a lot of body fat to pull on). From what you have described nothing “bad” is happening. It is so sad to watch someone we love change and deteriorate but know this is how we release from our body. I can’t give you a time frame but stay with her as long as you can. This is a special time for the two of you. Love her, sit with her, just being there is a great gift. If you have to leave tell her your goodbyes, tell her how much she means to you, tell her everything you want her to know and even tell her you probably won’t be seeing her again, that you know she is getting ready to leave. We have limited control over the time that we die. You might tell her you are thinking about when you will have to go home. Even if she appears to not understand what you are saying, a part of her comprehends. Here is my personal email Email if I can be of help. Blessings to you and your mom. Barbara


It’s been so great finding your books and this forum, Barbara. My mom has been living with dementia for 4 years. She has been at a nursing home all this time. She lost her sight years ago and hasn’t walked in years. Yet, she is the epitomy of grace under pressure and charm. Always kind, always chatty, determined, and opinionated with a love for laughter and music. A lot of that has changed in the past few months. I live outside of the country and wasn’t able to come see because of covid until 2 months ago. The trip was supposed to be 3 weeks, but her condition and my heart won’t allow me to leave. She no longer cares for music, has a pressure wound which was painful but it seems to be healing very slowly. She recently stopped wanting to eat solids and only wants liquids. She never had a sweet tooth but now that what she prefers. I try to give her as much of the things she does like when she is in the mood for eating. She is sleeping a lot. Sometimes such a deep sleep that she won’t respond to me. Other times she can fall asleep mid-sentence or while eating. She does recognize me and we do have conversations sometimes when she’s awake. And some days, like yesterday, she was up all afternoon engaged in conversation. A couple of weeks ago she started asking whether this was her death, that her body was good for nothing. This shocked me, because it seemed like she was very aware or lucid at that point, but I tried to not show the shock and sadness and just let her speak about how she was feeling. Seeing my mom, my absolute hero, go through this is beyond painful. The staff and caretakers are doing an amazing job at keeping her comfortable. And I do the same. But, it’s tearing my heart to pieces to see her go through this, and not knowing for how much longer makes it all even worse. I also need to go back home at some point, but I don’t think my heart will actually let me. I know this is out of everyone’s control, but I want to be with her as much as possible. In some strange way, I feel that she brought me into this world, so I’d like to be there when she is ready to move on.

barbara karnes

Hi Jane, thank you so much for sharing your husband’s last journey with me. The labor to leave the world is hard for all of us, not just the person leaving. My blessings are with you. Barbara

barbara karnes

Hi Dennis, thank you reaching out to me. What you are telling me about how you feel is very normal. When someone very close to us dies at first we are just numb. We go on automatic pilot not really feeling all that much—sad yes, alone yes, but mostly automatic pilot. At some point, and that point is different for everyone, the numbness wears off and we fall in a little heap on the floor and wonder what is wrong with us because we are in worse shape than when our loved one died and the months afterward. Dennis I think this is where you are. What to do about it? Yes, a therapist, someone to freely talk to about what you are experiencing is good but make sure they are a specialist in grief counseling. You might check with your local hospice. They offer grief support groups. Also see if your church offers grief support groups or counseling. You might read my booklet My Friend, I Care which has guidance on understanding grief. If you have more concerns or questions use my personal email and we can exchange ideas and feelings. Blessings to you. Barbara

Denis Imazeki

Barbara, I have written before. My wife died last year, March. All year I really felt her loss. But, after the first of this year, I thought I was starting to come out of the grieving and remembering the good times. However, in the past few weeks, I seem to be feeling her loss even stronger. I realize I am missing her companionship so much. I miss the feeling of being able to talk with someone that knows exactly where I am coming from, and who can either sympathize with or advise me, as the situation calls for. And I could do the same with her. We enjoyed many trips together, but I have not desire to travel by myself. When she got her fatal diagnosis, she said that she had had a good life and was ready to go. Lately, I am feeling the same way; that I had a good life with her, but now, I don’t have a desire for more, so I am ready to go. It is not a suicidal thought, just that I can’t generate a passion for life and living. I know that this is no way to live every day, and I want to continue to be a supporting factor to my two daughters and their families. Any suggestions to get out of this frame of mind? Would you recommend talking with a therapist? I am afraid I will descend into depression if I continue along my present path. Thank you for being a sounding board since I don’t want to expose my daughters to such depressing thoughts.

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