All out of ideas

[RosiePop]

Morning. I have a friend who is 58 and has been in a CH for 18 months. At first she thrived but her Alzheimers has deteriorated rapidly. She has been sectioned twice due to violent behaviour ( so out of character for her). The current issue is that since early December she has been singing a carol ( Angels from the Realms of Glory). This has hardly stopped for more than three months now. All conversation has gone although sometimes attempts at words are put to the tune of the Carol but are not decipherable.

Recently she has started sobbing through the singing and appears to be in anguish all the time. She barely reacts to the arrival of visitors. The things that used to pacify her such as being read to or head massages don't work any more.

I am not really aware of others being in such permanent anguish. My question is do others have experience of this or does anyone have any suggestions?

Thank you.

 

[Patricia Alice]

Morning. I have a friend who is 58 and has been in a CH for 18 months. At first she thrived but her Alzheimers has deteriorated rapidly. She has been sectioned twice due to violent behaviour ( so out of character for her). The current issue is that since early December she has been singing a carol ( Angels from the Realms of Glory). This has hardly stopped for more than three months now. All conversation has gone although sometimes attempts at words are put to the tune of the Carol but are not decipherable.

Recently she has started sobbing through the singing and appears to be in anguish all the time. She barely reacts to the arrival of visitors. The things that used to pacify her such as being read to or head massages don't work any more.

I am not really aware of others being in such permanent anguish. My question is do others have experience of this or does anyone have any suggestions?

Thank you.

Hi Rosie,

My story is similar. My mom was sectioned in December for hitting out, like your friend, so out of character. My mom does not sing but is constantly on the repeat and its the same questions over and over again. She sobs uncontrollably. She also has no interest in visitors. She does not take any notice of TV, but does sing when the radio is on.

I am sorry I have no answers for you, as we are in a similar boat. I put a thread on here the other day because I came home so sad at her demise.

I hope someone reading your post can offer some answers. I just wanted to say you are not alone.

 

[MerryWive]

Morning. I have a friend who is 58 and has been in a CH for 18 months. At first she thrived but her Alzheimers has deteriorated rapidly. She has been sectioned twice due to violent behaviour ( so out of character for her). The current issue is that since early December she has been singing a carol ( Angels from the Realms of Glory). This has hardly stopped for more than three months now. All conversation has gone although sometimes attempts at words are put to the tune of the Carol but are not decipherable.

Recently she has started sobbing through the singing and appears to be in anguish all the time. She barely reacts to the arrival of visitors. The things that used to pacify her such as being read to or head massages don't work any more.

I am not really aware of others being in such permanent anguish. My question is do others have experience of this or does anyone have any suggestions?

Thank you.

Hi Rosie, that does sound hard. My mother-in-law went through a phase of 'singing' all the time (including at night) and also had a phase of what seemed to be torment because her friends [imaginary or remembered friends from her childhood] were excluding her, so there is some similarity although not the same. I can say they were phases and disappeared as the disease progressed. The singing particularly went on for a long time.

I am sure you have tried distractions but here are some suggestions of things that I would try - showing her a photo of a loved one, playing with a cuddly toy, dancing to her song, joining in with her song, looking into her eyes holding her hands and singing the song with her, playing a different song on the stereo to take that one out of her mind. One thing that really worked to break my MIL out of her moods was when the carer acted upset pretending to sob making sure your head and body is at a lower level i.e. crouch down beside her and pretend to cry, then she would take pity and try to comfort you. Similarly, if she is angry sometimes miming anger brings her out of it. So if you try and mirror her emotions you may get a connection. I would also try stroking different materials on her hands/face, something to break her out of her world. Nothing guaranteed to work though! It's so sad to see dear people lost in such a world of anguish.

 

[RosiePop]

Thank you for your replies. PA, it must be heartbreaking when it is your mum. My friend is a lot older than me but not quite the same thing. Although I am sad to hear of the suffering of others it is a comfort to know that it is not that there is a magic solution that we are unaware of.

Merry Wive, excellent suggestions. We have tried singing Edelweiss to her and in the beginning she would stop her song and join in but less so now. I think we should try playing music in her room. Not done that yet. I saw a link to Play List for Life which looked excellent but i need to identify some favourite songs with her husband.

Just hating the sobbing/ anguish.

 

[pippop1]

Could she be in pain?

 

[AlsoConfused]

Clutching at straws ....

Has she had a review of her medication with a psychiatrist / geriatrician recently? Sometimes distress / violence can be improved through "tweaking" the medication.

As she's been sectioned fairly recently I'd have thought she would have had a thorough review of her medication then ... however, there MAY be something more the doctors can do. Could your friend's distress be affected by the side effects of any new medication she's taking?

 

[RosiePop]

The sectioning was before this changed behaviour.

Given that this permanent distress doesn't seem common, I might see if we can have a chat with a doctor ( as well as trying the suggestions above).

As you say, could be pain or issues with meds.

 

[Bernadette2]

Dear RosiePop -
I can't stop thinking about your Friend, so sad
Clutching at straws too...
Could you talk to family members and find out if there is a special connection for her to that song or Christmas?

 

[RosiePop]

Morning. An update. My friends singing has become louder and she is more agitated. This is upsetting the other residents. The CH ( specialist dementia) have said they cannot keep her any more. They have asked the Challenging Behaviour Team to find somewhere for her to go.

We don't want her to go back to the hospital where she was sectioned so they have said they will give her diazepam until somewhere can be found.

Where do you go when specialist dementia homes don't want you?

 

[MerryWive]

Morning. An update. My friends singing has become louder and she is more agitated. This is upsetting the other residents. The CH ( specialist dementia) have said they cannot keep her any more. They have asked the Challenging Behaviour Team to find somewhere for her to go.

We don't want her to go back to the hospital where she was sectioned so they have said they will give her diazepam until somewhere can be found.

Where do you go when specialist dementia homes don't want you?

That's so sad to hear. It is hardly Challenging Behaviour is it, she is only singing!!! Sorry I don't know the answer to your question, so frustrating, the seeming lack of ability to handle this disease is unbelievable until you come face to face with it..... I would have thought a change of meds and change of tactics on the part of the care team would enable her to stay where she is. Are there any residents who are hard of hearing? Perhaps she could be put near them so she is less of a disturbance??

Does she have 1:1 support? Maybe she needs to be assessed for that.

 

[RosiePop]

By way of update, the singing had mostly stopped over the last few weeks and she seemed calmer. Still anxious but much less so. We were beginning to hope that she might stabilise such that she could stay in her lovely home with her 1:1 care ( which has been in place for 6 months or so).

But it was not to be. CH think they have done as much as they can for her. Apparently she is resistant to meds and personal hygiene and can become violent. I think she can be violent with residents if they try to take her soft toy bear away from her for example. So the CH have had her sectioned and have given us notice so she will be unable to return.

There do seem to be CH s who specialise in " challenging behaviour" but this one was a specialist dementia CH so I am not really sure if that is right.

The hospital have mentioned some kind of NHS Unit.

Does anyone have experience of what is available if a specialist dementia CH can't keep someone?