Stopped talking - is this part of the decline?

[dcrowex]

I care for my best friend who is in a nursing home/dementia unit. I have noticed the last month or so, she does not speak hardly at all. I can visit with her for an hour, comment about something on TV, or the weather, etc, and I get no reaction or acknowledgment at all. There is simply no conversation or words spoken. She just stares straight ahead at the TV. Occasionally she may slightly turn her head and look in my direction, but then back to the TV.
Yesterday, we took her in her wheelchair out to the community room. She just stared at the floor. I was showing her magazines, making comments about pictures or recipes, just trying to engage her in some way. I noticed she was holding her arms and I asked if she was cold. She "barely" nodded, I would have missed it if I had not been looking right at her. I brought a blanket to her and wrapped around her.
The nurses mentioned it while I was there, that she is just not talking at all. An occasional word might slip out, usually I have to ask her to repeat it and she does not.
She is in late stage dementia. She has to have 100% care, completely incontinent, cannot get up by herself, cannot walk, not sure can even feed herself at this point, she seems to have no appetite.
Is this all part of the decline? It almost seems like she hears me, but cannot process her words to the point of actually speaking. If I am standing right in front of her bed, she may just stare at me. I just don't know what to think.
Thanks for any comments. Debbie

 

[Natalie J]

Dear Debbie, I'm so sorry to hear this, it must be such a loss for you when the two of you must have talked endlessly in the past.

I'm afraid I don't know much about this aspect of the disease at all, as the person I am caring for is still in the early stages so we've not crossed this bridge yet, but it must be such a lonely stage for the both of you.

My only experience with folks that have stopped talking was when I visited a care home with my sister who's job at the time included helping with a memory cafe and visiting people with dementia in a care home. I'm into aromatherapy and she asked me to come with her one day and bring some oils for the residents to smell and perhaps offer a very gentle hand massage if they wanted. We had zero expectations and she warned me that it could be a complete disaster (I had no experience whatsoever and she was pretty new to the job too, so we were learning purely by trial and error). Most of the residents absolutely loved the experience and I was amazed how animated and happy it made them when I wafted the different bottles under their noses. It was many years ago now, but I remember there was one lady I was told had stopped talking some years ago, and her head was just flopped forward at a funny angle and it didn't look as though she could move, but she responded to the Jasmine oil. Everyone was gobsmacked when she lifted her head and her hand / arm, looked me in the eye and said it was uplifting! She used to live abroad and someone asked her if Jasmine grew where she used to live, and she said yes! Another lady that couldn't speak just said, "Beautiful!" over and over again when she was given the oils to smell.

I was only visiting the area, so never went back to the care home, and so this may have been a one hit wonder. I've no idea whether I would have got the same response a second time, but it was fascinating and there does seem to be something rather special about aromatherapy oils.

I lost my sense of smell the second time I had covid and I read that it might be possible to aid recovery of it it if the nerves weren't too damaged by employing aromatherapy. The suggestion was to pick five fragrances I was very familiar with that were easy to identify such as orange, peppermint, lemon... I can't remember which other ones I used, and sniffing each for 30 seconds three times a day while trying to remember the scent and visualising the fruit / herb flower in the mind's eye at the same time as well. Fortunately my sense of smell did return after a week or two of doing that (it might have come back then anyway of course, who knows), but before it did, I noticed that I was still experiencing some of the psychological / emotional reactions that I'd previously associated with some of the oils. Some fragrances are generally considered relaxing, others invigorating etc. I tested myself by mixing the bottles around in the little box I store them in, picking them up at random and seeing if I felt anything as I inhaled, despite not being able to smell anything. I noticed I was able to detect some differences and guess correctly which were citrus oils, because they made me feel uplifted and energised. I was shocked by this (I love aromatherapy and other complementary therapies, but I expect I'll always remain quite sceptical to some degree because I just don't get how they work) but nevertheless greatly encouraged, as I took to mean the connection between my nose and brain was still there, and messages could be passed up through the damaged nerves.

I don't want to you give false hope, because like I say I am no expert at all and I have no idea whether it is realistic to expect these experiences would be replicated, but I just wondered as I was reading your post whether it might be worth you offering her a sniff of a few oils to see if you get any reaction from her? These oils are quite potent in their concentrated form, but I don't believe that they could do any harm if you are not applying the oils to your friend's skin, and simply allowing her to smell the bottles or a few drops on a tissue perhaps. You might see some reaction if you look closely and if nothing else, you might be able to detect whether she finds them pleasant or not.

I'd love to know how you get on if you do try this!

 

[Angel55]

Dear Debbie, I'm so sorry to hear this, it must be such a loss for you when the two of you must have talked endlessly in the past.

I'm afraid I don't know much about this aspect of the disease at all, as the person I am caring for is still in the early stages so we've not crossed this bridge yet, but it must be such a lonely stage for the both of you.

My only experience with folks that have stopped talking was when I visited a care home with my sister who's job at the time included helping with a memory cafe and visiting people with dementia in a care home. I'm into aromatherapy and she asked me to come with her one day and bring some oils for the residents to smell and perhaps offer a very gentle hand massage if they wanted. We had zero expectations and she warned me that it could be a complete disaster (I had no experience whatsoever and she was pretty new to the job too, so we were learning purely by trial and error). Most of the residents absolutely loved the experience and I was amazed how animated and happy it made them when I wafted the different bottles under their noses. It was many years ago now, but I remember there was one lady I was told had stopped talking some years ago, and her head was just flopped forward at a funny angle and it didn't look as though she could move, but she responded to the Jasmine oil. Everyone was gobsmacked when she lifted her head and her hand / arm, looked me in the eye and said it was uplifting! She used to live abroad and someone asked her if Jasmine grew where she used to live, and she said yes! Another lady that couldn't speak just said, "Beautiful!" over and over again when she was given the oils to smell.

I was only visiting the area, so never went back to the care home, and so this may have been a one hit wonder. I've no idea whether I would have got the same response a second time, but it was fascinating and there does seem to be something rather special about aromatherapy oils.

I lost my sense of smell the second time I had covid and I read that it might be possible to aid recovery of it it if the nerves weren't too damaged by employing aromatherapy. The suggestion was to pick five fragrances I was very familiar with that were easy to identify such as orange, peppermint, lemon... I can't remember which other ones I used, and sniffing each for 30 seconds three times a day while trying to remember the scent and visualising the fruit / herb flower in the mind's eye at the same time as well. Fortunately my sense of smell did return after a week or two of doing that (it might have come back then anyway of course, who knows), but before it did, I noticed that I was still experiencing some of the psychological / emotional reactions that I'd previously associated with some of the oils. Some fragrances are generally considered relaxing, others invigorating etc. I tested myself by mixing the bottles around in the little box I store them in, picking them up at random and seeing if I felt anything as I inhaled, despite not being able to smell anything. I noticed I was able to detect some differences and guess correctly which were citrus oils, because they made me feel uplifted and energised. I was shocked by this (I love aromatherapy and other complementary therapies, but I expect I'll always remain quite sceptical to some degree because I just don't get how they work) but nevertheless greatly encouraged, as I took to mean the connection between my nose and brain was still there, and messages could be passed up through the damaged nerves.

I don't want to you give false hope, because like I say I am no expert at all and I have no idea whether it is realistic to expect these experiences would be replicated, but I just wondered as I was reading your post whether it might be worth you offering her a sniff of a few oils to see if you get any reaction from her? These oils are quite potent in their concentrated form, but I don't believe that they could do any harm if you are not applying the oils to your friend's skin, and simply allowing her to smell the bottles or a few drops on a tissue perhaps. You might see some reaction if you look closely and if nothing else, you might be able to detect whether she finds them pleasant or not.

I'd love to know how you get on if you do try this!

💗 How lovely x

I have seen music bring a lot of pleasure to people. Someone seemingly just tapping on a table with their eyes closed rocking back and to suddenly joined in singing and knew all the words and smiling so you never know.

 

[dcrowex]

Thanks for such sweet and informative replies. I am very interested in the scented oils and assorted things, I will have to try that! And one thing she always loved was oldies music. About 3 months ago, I was playing it on my phone and as you noted, she was tapping her fingers and even sang some of the words. I asked her if she remembered when we used to dance to that music and she said why arent we dancing now? I helped her stand from her wheelchair and we swayed back and forth for a few minutes but then she had to sit right back down. Fast forward to now, I play the same music she loved and there is no reaction at all. I still play it when I sit with her because I feel like she can hear it.

My sincere heartfelt feelings go to you, this is so hard seeing people you care about decline this way. We keep trying to do all the right things. We have been best friends for over 40 years and she only has me as she has been estranged from her family for years. We always said we would take care of each other. At the end of the day, we can only do what we can do.

Thank you for your replies.

 

[Bevvywevvy]

Dear dcrowex. What a lovely,poignant post. Thank you.