Worried about my Mum

[HopefulDaughter]

Hello,
My Mum is in a nursing home with advanced mixed dementia, vascular and Alzheimer’s. She is bed bound and still eating but only weighs 39kg so very frail and living in her own version of reality. When I visited yesterday she didn’t seem herself and now I’m sitting here feeling very anxious and confused.
She was in a deep, deep sleep when I arrived which is unusual and she didn’t stir for half an hour until I then tried to wake her gently by talking to her. When I spoke to her she responded eventually but with her eyes closed and didn’t move. Later on she then woke up when but seemed unable to communicate - even the few words she used to say seem now to be out of reach. The most alarming thing was that she kept dropping into deep sleep/unconsciousness with eyes rolling back into her head, with no warning.
She was also shaking slightly from time to time. When I left she looked at me and seemed to be trying to communicate but seemed unable to speak.
I feel as though she may have had a minor stroke.
I mentioned to nursing team that I was concerned but they didn’t seem worried.
Has anyone seen this before - particularly with the eyes rolling back?
I am worried she is going downhill and this is the beginning of the end.
Can anyone advise or share any similar experiences.
Thank you.

 

[SeaSwallow]

Hello,
My Mum is in a nursing home with advanced mixed dementia, vascular and Alzheimer’s. She is bed bound and still eating but only weighs 39kg so very frail and living in her own version of reality. When I visited yesterday she didn’t seem herself and now I’m sitting here feeling very anxious and confused.
She was in a deep, deep sleep when I arrived which is unusual and she didn’t stir for half an hour until I then tried to wake her gently by talking to her. When I spoke to her she responded eventually but with her eyes closed and didn’t move. Later on she then woke up when but seemed unable to communicate - even the few words she used to say seem now to be out of reach. The most alarming thing was that she kept dropping into deep sleep/unconsciousness with eyes rolling back into her head, with no warning.
She was also shaking slightly from time to time. When I left she looked at me and seemed to be trying to communicate but seemed unable to speak.
I feel as though she may have had a minor stroke.
I mentioned to nursing team that I was concerned but they didn’t seem worried.
Has anyone seen this before - particularly with the eyes rolling back?
I am worried she is going downhill and this is the beginning of the end.
Can anyone advise or share any similar experiences.
Thank you.

@HopefulDaughter I am so sorry to read about your mum’s condition. I have not had any experience of the symptoms that you describe but would suggest that you push the nursing home into arranging a doctors visit for your mum as a matter of urgency.

 

[JanBWiltshire]

I really feel for you as a deterioration is always a worry. My mother has vascular and mixed dementia and she also seems much more sleepy these days and drops off mid conversation and I think this is “normal” for this kind of dementia and late stage.

Lost my father a few months ago I now try to have a mindset of “any day” and also that there is nothing I can do to prevent or even predict the end but I just say to myself I’m in it until the end comes. This new mindset has given me permission to be a bit easier on myself!

I definitely think this journey to the end requires a medal of some sort! It is the hardest thing in the world to deal with.

 

[HopefulDaughter]

Thank you so much for your responses.
I visited again today and my Mum now has a bedsore on her back and was in a lot of pain. It was very distressing to see and I was hoping that she wouldn’t have to suffer any more but here we are. I’ll speak to the nursing home tomorrow and I hope that with careful treatment it will heal.
Onward and upward. Thanks for your support.

 

[HopefulDaughter]

I really feel for you as a deterioration is always a worry. My mother has vascular and mixed dementia and she also seems much more sleepy these days and drops off mid conversation and I think this is “normal” for this kind of dementia and late stage.

Lost my father a few months ago I now try to have a mindset of “any day” and also that there is nothing I can do to prevent or even predict the end but I just say to myself I’m in it until the end comes. This new mindset has given me permission to be a bit easier on myself!

I definitely think this journey to the end requires a medal of some sort! It is the hardest thing in the world to deal with.

Thank you and I’m sorry to hear about your father. I think that is a very good & helpful mindset to have on this journey. Thanks

 

[HopefulDaughter]

@HopefulDaughter I am so sorry to read about your mum’s condition. I have not had any experience of the symptoms that you describe but would suggest that you push the nursing home into arranging a doctors visit for your mum as a matter of urgency.

@HopefulDaughter I am so sorry to read about your mum’s condition. I have not had any experience of the symptoms that you describe but would suggest that you push the nursing home into arranging a doctors visit for your mum as a matter of urgency.

@HopefulDaughter I am so sorry to read about your mum’s condition. I have not had any experience of the symptoms that you describe but would suggest that you push the nursing home into arranging a doctors visit for your mum as a matter of urgency.

Thank you.

 

[Sonya1]

Hello,
My Mum is in a nursing home with advanced mixed dementia, vascular and Alzheimer’s. She is bed bound and still eating but only weighs 39kg so very frail and living in her own version of reality. When I visited yesterday she didn’t seem herself and now I’m sitting here feeling very anxious and confused.
She was in a deep, deep sleep when I arrived which is unusual and she didn’t stir for half an hour until I then tried to wake her gently by talking to her. When I spoke to her she responded eventually but with her eyes closed and didn’t move. Later on she then woke up when but seemed unable to communicate - even the few words she used to say seem now to be out of reach. The most alarming thing was that she kept dropping into deep sleep/unconsciousness with eyes rolling back into her head, with no warning.
She was also shaking slightly from time to time. When I left she looked at me and seemed to be trying to communicate but seemed unable to speak.
I feel as though she may have had a minor stroke.
I mentioned to nursing team that I was concerned but they didn’t seem worried.
Has anyone seen this before - particularly with the eyes rolling back?
I am worried she is going downhill and this is the beginning of the end.
Can anyone advise or share any similar experiences.
Thank you.

I would definitely be pushing for a GP to visit and examine your Mum. I'm wondering, with you mentioning eyes rolling back and shaking, whether she is in fact having some kind of seizures? It must be very upsetting for you to see her this way and I feel for you x

 

[mdupl007]

Hello,
My Mum is in a nursing home with advanced mixed dementia, vascular and Alzheimer’s. She is bed bound and still eating but only weighs 39kg so very frail and living in her own version of reality. When I visited yesterday she didn’t seem herself and now I’m sitting here feeling very anxious and confused.
She was in a deep, deep sleep when I arrived which is unusual and she didn’t stir for half an hour until I then tried to wake her gently by talking to her. When I spoke to her she responded eventually but with her eyes closed and didn’t move. Later on she then woke up when but seemed unable to communicate - even the few words she used to say seem now to be out of reach. The most alarming thing was that she kept dropping into deep sleep/unconsciousness with eyes rolling back into her head, with no warning.
She was also shaking slightly from time to time. When I left she looked at me and seemed to be trying to communicate but seemed unable to speak.
I feel as though she may have had a minor stroke.
I mentioned to nursing team that I was concerned but they didn’t seem worried.
Has anyone seen this before - particularly with the eyes rolling back?
I am worried she is going downhill and this is the beginning of the end.
Can anyone advise or share any similar experiences.
Thank you.

What medications do they have your mom on? I care for my mom at home with the help of hospice for pain management and I can tell you for sure it's been a roller coaster trying to get her medication right to keep from sedating her because I want her alert while their main goal is comfort care which sedates them....

 

[Emac]

Feel for you. Definitely needs a GP assessment If you have noticed a change. Sadly It may just be her disease progressing. My mum is also end stage and shakes ( like extreme shivering) from time to time when awake but not when asleep. She doesn’t seem to be in pain. So hard to know.

 

[HopefulDaughter]

I would definitely be pushing for a GP to visit and examine your Mum. I'm wondering, with you mentioning eyes rolling back and shaking, whether she is in fact having some kind of seizures? It must be very upsetting for you to see her this way and I feel for you x

Thank you. I thought the same about the seizures and I’ve asked for a GP assessment.
Dementia is so unpredictable, last week she was absolutely content and now her behaviour has changed completely and she is agitated and not herself.
The nursing home is treating the bed sore so hopefully it won’t escalate and we have treated it in time.

 

[HopefulDaughter]

Feel for you. Definitely needs a GP assessment If you have noticed a change. Sadly It may just be her disease progressing. My mum is also end stage and shakes ( like extreme shivering) from time to time when awake but not when asleep. She doesn’t seem to be in pain. So hard to know.

Thank you. Sorry to hear about your mum.