My mom has been in assisted living since 2019. She is entering the last stage of Alzheimer’s at this point and was just recently moved into memory care.
I noticed over the past couple of months that she was speaking less and less. Where previously she would repeatedly ask the same couple of questions, now she doesn’t seem to speak at all.
As of Christmas week, she could/would smile occasionally, but now there’s no facial expression whatsoever.
She’s also been sleeping A LOT for the past 18 months. It’s slowly gotten worse and she’s now (as far as I can tell) sleeping probably 20 hours a day. She awakens for meals and when they wash her up, but that’s pretty much it.
I also noticed at the Christmas luncheon that she only took a couple of bites of food. They moved her to memory care on 1/1. I’ve only been over three times since (because Covid is sweeping through there - she actually got it). But all three times I’ve seen her lunch from that day sitting untouched.
And I’m just trying to grasp what’s happening. It’s just all changing so rapidly!
One thing I need to know is does she need to be fed. Because I’m thinking now that she does. When I dined with her at Christmas, she didn’t touch any of the food until I pointed out what was on her plate. She then picked up her fork and ate a couple of bites. I chalked this up to just not being very hungry at the time. But now I’m thinking that was wrong thinking and that she really just needs help.
And I’m also wondering now if she’s even a candidate for memory care. I’m reading that normally in MC that they get the residents up and out into the central room where they stay most of the day. My mom has spent the last 18 months lying down and sleeping through her days and nights. I don’t see her being capable of remaining upright for any extended period of time.
Right now, because of Covid, they’re all staying in their rooms. But a month from now I suspect they’ll have resumed normal schedules.
I’m just worried about her. I’ve asked her repeatedly over the past few years if she was ready to move in with me. She always answered “no”. We brought her here for Thanksgiving and I asked her again. She said no. But now I’m not confident she can speak to communicate her needs to the staff there. And I’m also not confident anyone is assisting her with eating. I know the facility is currently understaffed (as they all are)…
Perhaps they’ll allow me to spend an entire day with her to get a firm grasp of what her needs are versus only getting a snapshot in time.
The day before my wife went into a coma, I was with her for lunch. I touched a spoon full of food to her lips, but she had no interest. She wasn't knowingly refusing the food, she just was staring straight ahead in a catatonic state. She became comatose the next day.
The staff in MC normally would involve residents in daily activities, but the fact that your mom sleeps most of the day, getting her up to participate, wouldn't benefit her at all, she wouldn't have the energy to participate and would just fall back asleep.
Spending a day with her to determine what her needs are, I think, would be futile. Her needs at this point are for comfort and companionship. Touch is important. When you're with her, make sure she feels your presence.
I’ve been questioning - does mother want to eat? Perhaps not. I’ve been concerned maybe she’d want to eat but is confused…or perhaps she’s not seeing the food very well. (If my mother wants to eat but cannot, then I’m willing to go daily for lunch or dinner to assist her. Or perhaps consider moving her home with me. But I’m absolutely not trying to force her to eat. And I’m quite determined to keep her out of a nursing home if I am able. It’s my intent to bring her home with me once she’s no longer a candidate for MC. We’ll (hopefully) hire some part-time help to assist.)
That all being said, I’ve got an Echo Show in her new room which sits in front of her chair where she sits while eating. Just got it connected on Friday. I managed to drop in on her today right about the time they had helped her sit down and had given her lunch. I was able to observe her. She was able to use her fork and spoon. She ate two bites of her entree and then ate the majority of her dessert. Lol. I think she’s fine and just making her own decisions as to what she does and does not want to eat.
I Interestingly, TODAY, I witnessed her speaking a couple of words to the staff. And while I was on video with her, she had no response to anything I said until I told her goodbye and that I loved her. To which she replied, “I love you, too.” What a delightful surprise!
Perhaps overall she is in better condition than she appeared on Friday and was just having an off day.
About eating; if your mother doesn't want to eat, she shouldn't eat. If she needs HELP eating, the staff should recognize that need and they should help her. As dementia progresses, the taste buds change and they want sweets only, as a rule. So let her eat sweets! My DH tells my mother to 'eat dessert first', that she's earned that right! LOL. I bring her cookies & chocolates and she always has room for those treats. You should also know that with advanced dementia comes swallowing issues for SOME people. The doctor can order a swallow study to see if your mom is having trouble swallowing; probably not since you said she ate the majority of her dessert today; there you have it about the sweets!
Last but not least, dementia is not linear; she will have good days & bad days. Days where she'll sleep 20 hours or more and others where she'll be spry and awake. Same with speaking and eating. My mother has days where she'll talk and talk and others where she won't say much of anything. She has a lot of trouble understanding language lately which SEEMS like a hearing problem; but it's not. She'll say WHAT WHAT WHAT? But even if I speak to her at the top of my voice and the CG repeats what I'm saying, she still can't 'hear' me which means she can't UNDERSTAND the words I'm saying. That's called 'aphasia' and comes along with dementia in the later stages as well. Very sad and very ugly, dementia is, and I hate it with every ounce of my being.
I pray for peace for both of us and for our mothers as we all travel this journey to its final conclusion. Sending you a hug of understanding and empathy as well.
This is the time when you need to decide a few things, the first of which is deciding what's the most important thing that you think will lead to quality of life. I moved my mom to MC because I knew skilled nursing couldn't cure her congestive heart failure, and they couldn't fix her arthritic knees, but they could still stimulate her once-sharp mind. That's why I chose Memory Care -- I wanted the focus to be on her mind, and the other stuff could be controlled with medication until they couldn't be. She went from sleeping 18 hours a day in a chair to never sleeping during the day, because there were things going on around her to keep her interested even if she didn't participate.
Let the people know at MC that Mom needs help eating -- they'll do it. They aren't going to force her to eat, and swallowing may be becoming an issue for her. It's common in dementia patients, so she could be assessed by a speech pathologist to see what's going on there. She might need a soft or liquid diet instead, too, so have all that checked out.
It also might be time to look into hospice care. Memory Cares have plenty of patients on hospice, so she doesn't have to be moved, and the hospice folks will be an extra set of eyes on her, even during Covid. My mom was on hospice care for the last seven months of her life, and the MC let me go in with the nurse every time she was there when they weren't allowing face-to-face visits otherwise. I got to be with Mom every day for the last several weeks, because the nurse was there every day to do wound care on her.
I'd also suggest not bringing her home to visit any longer. It's really jarring and confusing to be taken out of their familiar surroundings, and even though your house might be a place where she was a million times, it won't feel like that to her.
MC is just a step up from an AL. Where I live they are in the same building, different sides. Both are not skilled nursing. The difference is just changing over from an AL to lockdown.
I plan to request another hospice evaluation ASAP.
And we’ll was able to drop in for awhile today and observe her for awhile. She ate a little better for dinner. But then I noticed staff came in and brought an Ensure for her. They commented she needed better nutrition and they asked if she would drink it…which she did! I am extraordinarily pleased.
My priorities for her are to not be in pain and to be comfortable and content. If they’ll keep her in MC, I think we can fulfill that.
It was interesting to read that your mom went from sleeping 18 hours a day to not once they got her stimulated and involved. I’m hoping it might work out that way for my mom, as well. Right now, Covid is rampaging through the facility and do everyone is staying in their rooms. I know they won’t keep things this way any longer than necessary. And I’m looking forward to her being able to go out into the main room for her meals and activities.