How to provide some comfort to my mother with mid/late stage Lewy Body?

[Marbella79]

hi everyone and thanks for reading.

My mother has been in a care home for 2 years with probable Lewy Body / Parkinsons. She is unable to care for herself at all and has very limited mobility.

She still however has insight in to her condition and for much of the time is very anxious, scared, confused and upset. Due to Lewy Body, she also suffers paranoia and confusion. Her communication is limited - some days are better than others and she is able to follow a conversion and to some degree contribute herself, other days the paranoia and confusion take over and she seems to be in a different place. On the worst days she will say she is struggling to go on.

Any thoughts at all as to how we can provide some degree of comfort, or help to calm her through distraction? Music and massage are the only things we have managed to put our heads together and come up with….but any ideas would be welcome. Sometimes distraction can help her, but she is not able to focus on one thing for very long and things like reading or following a 'process' are long gone.

Many thanks and best wishes to all.

 

[juliedaizy]

mother with lewy body dementia too

Hi Marbella
I don't have the answer but wanted to share that I too have a mother with Lewy body Dementia and how confusing and upsetting it has been for everyone because it seems to come and go. The paranoia and hallucinations are frightening for my mother who cannot realise they are not true. Accusations of all sorts have gone on. The recent one is of my father leaving her, but he has been dead 7 years. I told her a few weeks ago that he was dead but this was a terrible mistake. Now I don't know how to respond to her asking why he has left her, I can't tell her he is dead but when I try to say he is out it is too upsetting for me even. So, I send you my sympathies and if anyone else wants to share their experiences, it would be nice to hear from you.

hi everyone and thanks for reading.

My mother has been in a care home for 2 years with probable Lewy Body / Parkinsons. She is unable to care for herself at all and has very limited mobility.

She still however has insight in to her condition and for much of the time is very anxious, scared, confused and upset. Due to Lewy Body, she also suffers paranoia and confusion. Her communication is limited - some days are better than others and she is able to follow a conversion and to some degree contribute herself, other days the paranoia and confusion take over and she seems to be in a different place. On the worst days she will say she is struggling to go on.

Any thoughts at all as to how we can provide some degree of comfort, or help to calm her through distraction? Music and massage are the only things we have managed to put our heads together and come up with….but any ideas would be welcome. Sometimes distraction can help her, but she is not able to focus on one thing for very long and things like reading or following a 'process' are long gone.

Many thanks and best wishes to all.

 

[Tin]

Music and massage are really good ways to distract, have you thought about reading to her, maybe from a book she has read in the past. Also what about a manicure. My mum has Vascular Dementia and the times when she seems to be very stressed or anxious the tactile stuff seems to work like a manicure, pedicure or even a hair wash and then warm hair dryer, she also likes it when I very gently make circles with my finger in the palm of her hands. My lava lamp works really well too, have a big one in the corner and when on, mum loves counting the big red balls.

 

[cragmaid]

Daft though it sounds, sometimes a soft toy, (Mum had a small old English Sheepdog called Sam )or a fleecy cardigan or a bit of fur/fur fabric can soothe. Just the act of stroking can calm.
( OK I'll shut up now, )

 

[In a Whirl]

I have got my dad into "physio therapy" exercises..all down whilst sitting down.There is lots on the net -search for Senior Gym. We always start & finish with massaging his legs,ankles & knees & hands which he likes.We do 10 reps each hand or leg.

 

[Tin]

Daft though it sounds, sometimes a soft toy, (Mum had a small old English Sheepdog called Sam )or a fleecy cardigan or a bit of fur/fur fabric can soothe. Just the act of stroking can calm.
( OK I'll shut up now, )

Not that daft cragmaid, I had an old real fur, very old, collar that I turned into a hand muff for mum so that it is furry and soft inside and out. Often see her stroking it and sometimes taking it to bed.

 

[Patricia Alice]

hi everyone and thanks for reading.

My mother has been in a care home for 2 years with probable Lewy Body / Parkinsons. She is unable to care for herself at all and has very limited mobility.

She still however has insight in to her condition and for much of the time is very anxious, scared, confused and upset. Due to Lewy Body, she also suffers paranoia and confusion. Her communication is limited - some days are better than others and she is able to follow a conversion and to some degree contribute herself, other days the paranoia and confusion take over and she seems to be in a different place. On the worst days she will say she is struggling to go on.

Any thoughts at all as to how we can provide some degree of comfort, or help to calm her through distraction? Music and massage are the only things we have managed to put our heads together and come up with….but any ideas would be welcome. Sometimes distraction can help her, but she is not able to focus on one thing for very long and things like reading or following a 'process' are long gone.

Many thanks and best wishes to all.

My mom is exactly the same. Her paranoia and confusion is so bad now. Yesterday she was rambling on about being in the newspaper for some crime and the police had come to the home to arrest her. She has never been in trouble in her life and never been in the newspaper so we are baffled at these ramblings. She also cries constantly asking the Lord to come and get her.

My sister and I cry constantly.

We were told to find an EMI home and yesterday found what we thought would be perfect but today they said it would cost £875 a week, she has no money and is funded but that would mean we would have to find £400 odd a week but from where!

I am unable to offer you any comfort as I am dealing with the same and unknown.

It is so sad.

Bless you

 

[Aitchbee]

My Mum has Lewy Body dementia. She is probably a stage further on as she isn't really able to hold a sensible conversation. She used to have delusions that were very difficult to deal with. She is now very much in her own world. She hallucinates constantly and has lengthy conversations with the people she "sees". It is hard to know what to do to provide stimulation or distraction. As others have said, massage and music sometimes help. Also, lots of reassurance even if we haven't a clue what it is that is distressing her - just tell her that everything is fine or that we will sort things out! If Mum gets agitated we give her paracetamol which helps to calm her down. This forum has been a great help. There is a forum on the Lewy Body Dementia Association website (American organisation) http://www.lbda.org/community/forum/ that I have found helpful, although a lot of the information is based around the U.S. care system. I hope you find some solutions. Does your Mum have a CPN who can advise you?