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.
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.
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.
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.
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.
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.
So it seems they do know....
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.
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.
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.
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.