Follow
Share

I'm posting in the A&D forum because mom has dementia and often exhibits Sundowner's Syndrome. I'm not sure if what she is experiencing is related to the dementia or is actual End of Life manifestations. I'm hoping to get feedback from anyone experiencing this behavior.


First let me say that both my grandmother and my MIL knew when they would pass. Very briefly.... in 1996 my 93 year old grandmother, on Christmas Eve, shooed me and my husband out of the nursing home for an 'appointment' she had a 6:00 PM. We arrived about 5:15. We would talk, she would interrupt several times with a reminder about her appointment, we would ask about it and she would only say she had an appointment at 6:00 with 'the man'. We left about 5:55. When we arrived at my parent's home to celebrate Christmas Eve, we learned that the Nursing home called at 6:08 and that she had passed. Needless to say, we were freaked.


Last year, my 96 year old MIL had been dx'd with COPD in August. She was ambulatory and was able to get around with her daughter's help for most of her last months. I always have Thanksgiving and last year was no different. All she talked about was going to Thanksgiving dinner and seeing all the kids, which luckily came to pass. She had a great day. However, as we always do at Thanksgiving, we talked about Christmas, exchanged names, etc. She would not discuss Christmas whatsoever. When we asked what she wanted she would shake her head and mutter something under her breath. During her last days, she talked about 'going home', staring out the window saying 'they're here', and apologizing to me (for something that happened many, many years ago). She passed on 12/21.


Recently my mother (94), who I mentioned suffers Sundowner's has been experiencing periods of seeing (and going to baseball games) with my dad and brother (both deceased). Most disturbing was a phone call she got the other day in which she told me they said, "attention, attention, attention - you are nearing the end of your life". I viewed the call log and saw the unsolicated call was Wyndam Rewards credit card services. I called the number and asked to be put in touch with the advertising department to ask if I could hear their robo call. They were unable to help, but I blocked the number from my mom's phone. She hasn't mentioned the call since, nor have I.


In addition to her delusions (??), she has been sleeping more - sometimes 16 hours a day. She has checked out as far as involvement with the family - hardly ever asks about any of us and only thinks of her wants and needs. Her resentment and negativity is increasing. Recently she declined to let her aide in to do the weekly laundry and cleaning as well as her OT therapist which is scheduled for Thursday. But the next day realizing what she did, demanded they come in on Friday. I told her the aide and therapist was busy with other patients. She said some rather nasty things and I basically told her that she was the one who sent them away and she might want to think twice before doing that again. Mom lives in an ILF with services mentioned above. She is still able to take care of her basic needs, is not incontinent and I have a camera to watch her whenever I want. Her day consists of eating, sleeping, bathroom. My brother and I go over twice a week, but she complains to me about him, and she complains about him to me. Says she doesn't want us sitting there and staring at her.


I want to move her into memory care facility, but on her good days she fights me and on her bad days it's a moot point to bring it up. Also, I'm trying to wait until restrictions ease up on covid.


Thoughts and suggestions are welcomed.

This question has been closed for answers. Ask a New Question.

17 Answers

Most
Helpful Newest
First Oldest
First
I definitely think that people sense when their ending is near.
Helpful Answer (1)
Report
My cousin was caregiving her mother (aged 96) in her home and she was very ill. The night she passed my cousin told me that her mom was holding her arms out and with her eyes open softly saying "Jesus, Jesus...". My cousin is not particularly religious but my Aunt was Catholic and went to church until she got ill. I am fascinated by the accounts posted on this thread!
Helpful Answer (1)
Report
Sounds like she is in the 5-6 stage out of 7 of dementia. If she is still continent, ambulatory, can communicate her needs, is able to be alone in her home, she isn’t hospice ready. She is going to die someday, but people with Dementia stage 7 live an average of 7 yrs bedridden as a baby.
your mom will talk of her past as tho it’s happening now, you just go into that reality with her and enjoy what you learn. The current dementia friend I help, talks of her husband and what they do together, he has been dead for 5 years. I listen ask questions never contradict, explain his absence by explaining; he is at work, with son, shopping. All those explanations sound good to her and we are off happily chasing other memories. She is in stage 5/6 of dementia and she has had her mom over for coffee( gone decades) her siblings to join on a trip( she is the only remaining sibling alive). I call these memory bubbles that we walk thru till they pop and are gone.
if your mom is beyond stage 4 dementia it’s time to consider new living arrangements; AL or memory care, have your choices ready as her current facility will not be able to keep her safe past stage 5 and she will need more supervision.
Helpful Answer (1)
Report
Tese50: The answer that you're looking for is "yes." In my own experience, my mother did predict her own demise, saying things like "It won't be long, I've lived long enough," which of course are things that no daughter wants to hear. However, she was correct as she passed from an ischemic stroke on or about 3 weeks after those foretellings.
Helpful Answer (0)
Report
I lost my husband at 62 years young this past spring. It was a definite surprise as it was unexpected. I found him dead on the basement floor leaning on the recliner chair, with the most serene look I’ve ever seen on his face. He was a smiling!
Prior to this he was having conversations in his sleep with friends and family who had passed, which he told me about and I witnessed. Not sure what was going on as he was young and not at deaths door, or so I thought. Then a few days before he died he said he had a dream that the spare bedroom was filled with boxes and he was dead. I didn’t know what to make of this either and we both laughed it off.
After reading all these posts it brought his comment came back to me, what’s eerie is I now have this room filled with boxes and use it for a storage room.
Three years prior to this I lost my Mom, she had a stroke and fell and ended up in Hospice. They called me to say she wouldn’t eat and said she was combative and I needed to come out to calm her down as I was the only one she responded to.
I rushed out there and sat with her for hours, I decided to run up the street to grab a coffee and told her I’d be right back. She made this sound and shook her head no!
So, I sat back down held her hand and we listened to her favorite show on the tv. As I talked, she squeezed my hand and passed a few minutes later. I’m so glad I didn’t go get that cup of coffee and was there for her.
I honestly do believe, people know when it’s their time to go, or are least given glimpses of what’s coming.
Helpful Answer (4)
Report
D
Dosmo13 Oct 2020
It is extremely common for people to refuse food, to the consternation of care givers, shortly before they die (even if they don't seem to have acute symptoms). The body is preparing to shut down and, seemingly, does not want to accept anything requiring digestion. (of course, you can't depend on refusal of food to ALWAYS signal approaching death). Still, it is not wise to force food on someone who adamantly rejects all food offered.
(0)
Report
Is anyone her DPOA or does she have a healthcare/life guardian? If someone her guardian I am not sure on every state, but I believe if it is in her best interest that person should be able to make a decision to put her to a memory care facility. Check with an elder care attorney. Many have ways of getting assessments done for compentcy and go from there.
Whole many people can know time is nearing, not everyone with dementia is as able as someone who is not.
It is kind of like when a doctor gives someone with cancer 6 months to live and they pass away in a few days, or someone with same diagnosis and 6 months lives for another 2+ years.
Sundowners is a time where they get antsy and figity and is usually when the sun is gone down for the evening.
Helpful Answer (0)
Report
I don't think you can get a definitive answer to your question, though it is an interesting one. As a nurse for many years, I was occasionally at the bedside of someone whose clinical signs showed they would be passing soon, often within hours. There is an interesting phenomenon where, sometimes, out of complete mental confusion and disorientation that had existed for perhaps days, a patient would briefly speak quite clearly and coherently. Often they would remark about something they had to do perhaps "in the morning" (usually some chore or obligation they might have had in the past). The moment of clarity was fleeting, but strangely, it was usually soon, like "in the morning" that they expired. Bear in mind, this occurred only in patients who were obviously at deaths door, not just critically ill. My brother, who died at home, in his last moments, looked up toward the ceiling and said "Is that you, Mama?" It gave me some comfort thinking "mama" might be there for me, too when the time came.

I'm in good health (for an 80 year old) but recently as I was waking one morning, I heard my mothers voice (not just "a" voice, but my mothers distinctive voice) saying "It's me, mama!" I quickly answered, but there was no response. It spooked me a little. That was months ago. And I'm fine! Not near death that I know of!
I don't think it's wise to jump to any particular conclusion about such strange happenings. Obviously, they do not necessarily mean that death is imminent. But they do provide material for interesting speculation.
Helpful Answer (6)
Report
I am guessing that "some" do know when their time is very near, but to me (personally) it just sounds like her mind is going more to things in the past, because you mentioned about going to the games with other family members, not much about she was "planning on going to games".  Can you find things to talk about that might be different, things you are doing in your life.  And when she is talking about things in the past, go along with it and ask her questions about it.  My dad would talk about an older car (I don't remember) that he had, I would ask him questions about it.  I would also talk about the other cars they had in their life.  Remember, they can remember "long" term memory and not the short.  My husbands one aunt said one time she was getting ready (while her husband lied on the couch) for them to go somewhere......and he yelled "its time to go"...and when she came down he had passed away (now he had heart surgery a couple months before).  Now did he know it was time to go or not?  no one will ever know.  wishing you luck but don't fret on it........when the time comes it comes...no one knows when.
Helpful Answer (1)
Report
When my mother was on home hospice, I was told that yes, they do seem to see loved ones and know the time is soon coming.

My mom would be sitting on the floor (she tried to get out of bed and can’t walk) and she when asked what she was doing, she would say she and her dad were driving to the store. They do hallucinate also.

There were times I wondered if she were hallucinating or if she really saw someone. Then there were times I also felt a presence. Yes, your loved ones do come get you to take you to the other side when it’s your time to leave this earth.

Much of your understanding comes from what you believe. I believe our bodies pass away, but our spirit goes back to heaven.
Helpful Answer (4)
Report
A year after my son passed I went to counseling as the anniversary of his passing hit me like it just happened. In talking to the counselor, I told her that he had asked his girlfriends sister to take care of his girlfriend if something happened to him and less than 2 weeks later he was gone. The counselor told me this is common, that people have a premonition of their passing. A couple years later, a classmate of his was killed in an accident. At the funeral, her mom told of her daughter calling her the day before the accident and insisting that she open her Christmas present from her.
So it seems they do know....
Helpful Answer (4)
Report
K
Karsten Oct 2020
your posting struck me. Many of us have had to deal with the passing of elderly loved ones, and it is hard. But to lose a son must be devastating. I am so sorry for you.
(0)
Report
Some folks do end of life work to prepare for passing on. Some don't. Some wait until they can see everybody to pass. Others wait until everybody leaves the room to pass. Many need to feel like they have completed whatever is a pressure or commitment in their lives. My grandmother had episodes like you mentioned for several years - without the unpleasantness you mention. She died a month shy of 99.
Helpful Answer (1)
Report
By the time my Dad found out that he had Pancreatic Cancer, he only had about 6 weeks left. He seemed to be okay with dying, but was quite concerned about my Mom not receiving his Social Security check that came on the 3rd of each month. He knew that if he died at the end of the month then Mom would have to return the next SS check. He hung on and passed on Sept. 4th. Mom could keep the check.
Helpful Answer (9)
Report
Under Hospice look at palliative care. If death is not imminent, palliative care would be a very good alternative. Check your insurance to be certain that this service is covered.
When my father was on home Hospice, one evening he was very agitated. I had to get a hand mirror so he could hold it up and see that there was no one in the room behind him. He kept saying, "No, go away. I'm not ready." I was kind of freaked out about it. The next morning, I walked into his room and he was sitting up waving. He had the most beautiful, peaceful smile on his face. I asked, " Dad what are you doing?" He replied that all the people where he used to work had come to tell him good-bye. Dad was moved to a Hospice facility that afternoon. About a week and a half later he died. I don't know if he thought of a particular date or time but I think, because of the night of agitation and the next morning of good-byes, dad knew he was going to pass soon.
Helpful Answer (3)
Report
My MIL had dementia and pancreatic cancer when she died. Years before she had told me of how the stained glass windows of her church “came alive” to her. She would tell me this in a matter of fact voice and it seemed very normal to her. I always wanted to go with her to see the windows. We didn’t live nearby and usually when I saw her it was during the holidays and we were both distracted with family and commitments. The perfect time never came. When she was in ICU prior to her death, she had the family in stitches telling jokes about her ER ride to the hospital. A great granddaughter was born that night and she was excited to hear that news and then she mentioned that Jesus was sitting across the room. Her daughter asked what did he look like. Her description was of a person dressed like a vintage prayer card of Jesus. She said that when she saw him sitting there, she new everything was going to be all right. She died a few days later. She was a devout Catholic. I’m sure her experience would be called a hallucination but it was very real to her and quiet beautiful as she described it. She certainly was at peace.
Helpful Answer (9)
Report
I was told on Aug. 5th by his Hospice nurse that my husband would be dead in 3 days. Well he didn't die then, but wasn't eating at all and wanted very little drink, and he too was sleeping about 18-20 hrs a day, so I knew that the dying process had started. He was in excruciating pain(more than his usual) and couldn't understand why, and kept asking my why he was in so much pain. I had just assumed that when people were dying they knew it, but at first my husband didn't so I just tried to tell him that his body was shutting down and that was why he had the pain. Eventually I did tell him that he was dying, but he didn't seem to believe me. He was seeing people in the room and talking to them a lot, and when I asked him if he knew them, he said yes. When I asked him if they wanted him to go with them, he said yes, and so I then asked him if he wanted to go with them, and he looked at me like I was crazy and said NO! That was about 3 weeks into his 6 week dying process. Then about a week later he called my name about 10:30 in the evening, and since I was sleeping right next to him on the couch, I thought he just needed to know that I was near, so I said, I'm right here honey, and he said, no, come here, so I got off the couch to see what was the matter as he sounded frantic. When I asked him what was wrong, he said, me dying,(his speech was quite impaired from his massive stroke years ago) and so I repeated, you're dying(?) and he said yes, and he wanted me to call my daughter and son (his stepchildren to whom he was very close) so he could say goodbye. I called them both so he could talk to them and then ended up sitting with him until around 2:30 a.m. as I thought he was going to die that night/morning, but when I realized that he wasn't, that it was just the day that he finally knew that he was going to die, I went back to bed on the couch. It was shortly after that that he did become unconscious, and remained that way until 2 weeks later when he did die on Sept. 14th of this year. I have pretty much cried the whole time I was typing this, but I wanted to share this, as everyone's dying process is different, and crying is part of the grieving process.
Please enjoy whatever time you have left with your mom, and make sure you have said whatever you need to to her. God bless you.
Helpful Answer (22)
Report
T
Tese50 Oct 2020
So sorry for your loss! It was certainly a long goodbye, but glad there was time at the end for him to say goodbye to your children. I had a talk with mom today (a good day). She doesn't remember the phone call, or the ballgame with dad and brother. She knows she's declining - I will look into hospice care as other posters suggested. Thanks for responding.
(2)
Report
See 1 more reply
Some people have "hallucinations" (I put the quote marks because I am open to the possibility that Past family may come to visit and it is when we are open that we can see them, maybe when you are closer to the end of life you become aware of them)
There are obvious signs, there are in no particular order
Sleeping more
Stopping eating and drinking
Withdrawing
Build up of secretions, this can change breathing
Change of breathing (these combined can produce what is sometimes called a "death rattle")
IF mom is not n Hospice call them and have her evaluated. I am sure she would be eligible and you will get a lot of help and support. You would also get the equipment that you need to make caring for her easier and safer. And you would have a Nurse that will come weekly to check on her, a CNA that will come help care for her at least 2 or 3 times a week and you would have the services of a Chaplain if you wish and a Social Worker. I would not have been able to care for my Husband the way I di if it were not for my Hospice Team.
Helpful Answer (6)
Report
Mom might be preparing for the end. They do sleep more and more. But, it might just be her Alzheimer's progressing. Delusions are common with dementia.

Is she on hospice or been evaluated? You might want to request that. The hospice pros will be best equipped to help you understand where mom is in the dying process if she is yet.
Helpful Answer (3)
Report
T
Tese50 Oct 2020
Thank you - I've never considered hospice because I don't think, nor does her PCP believe that death is imminent. However, I understand you can be on hospice because of the dementia diagnosis insofar as it's considered terminal. I will definitely look into this.
(2)
Report
This question has been closed for answers. Ask a New Question.

Recent Questions


Popular Questions


Related Questions

Ask a Question
Subscribe to
Our Newsletter