I have a client that is going through this

[Darkbuterfli]

Is there anything you can do to help someone with this disease to have better days? I mean along the lines of reading to them or singing or just plain talking to them?

[easterncedar]

Yes to all of those things! When someone was reading he would follow more attentively than he could with audio books. My guy liked being taken out in his wheelchair and enjoyed foot massages, too.

[NannaB]

Yes, all of those. A speech therapist was once surprised when I had a phone call while she was there and I told my husband everything the caller had said. She told me that some carers stop talking to their loved ones or clients when they no longer received any answers back. I don’t know if your client has any speech but if not, can he put his thumb up and down? I used to read newspaper articles and say things like, ‘Do you think he should have got a longer sentence?” Or any other question which only required yes no answers. If they can still speak, give them time to form their answers. In their head they know exactly what they want to say. My husband liked me reading short stories or playing audio books although the audio books did tend to send him to sleep quicker than me reading.

You sound like a very caring person.

[HilsandR]

Hello Darkbutterfli, the response from NannaB was spot on as usual. Keeping a loved one engaged in the day to day stuff is so important even if they are not able to respond, as they do not lose their awareness. I chat to my husband throughout the day about anything and everything, even though his thought processing does not allow him to respond in the way he used to. He can still speak, the right words just can't be found. Sadly, he has become invisible to some friends and whilst they still visit they don't make the effort to chat with him. One friend who came for dinner over the weekend greeted my husband on arrival and said goodbye when he left and completely ignored him in between BUT spent time talking to our cat. I came to the conclusion that unlike talking to a human there was no possibility of an interactive conversation with a cat, therefore he felt more comfortable at the lack of response. I can't get angry with these people as have enough emotionally to deal with, but have resigned myself to the fact that they just don't understand and why should they, it's taken me long enough to get an understanding of this horrible disease. Just keep chatting, singing around the house if you like, whatever, just so that life stays as normal (in the new normal) as it can be for the person you are caring for. I always have the radio on throughout the day and often get my husband to try to sing along to something I know he knows the words to. I am longing for some decent weather so that I can get him out in the wheelchair. He loves a walk in Richmond Park or just sitting by the river watching the boats and I can tell he takes it all in and is more likely to try to converse when we are out and about. Best wishes, it's a never ending slog but we all find a way of getting through each day and making our loved ones lives just that little bit more cheery. HilsandR

[teej]

Be patient and be prepared for your client to respond in their own time. My mums responses slowed down so much. I don't know how many times I sat with her and someone would come up and say "hello Mary " they would wait maybe 5 or 10 seconds for a reply, smile awkwardly at me then walk away only to miss her reply maybe 15 or 20 seconds later. Very good Carers at the nursing home who saw mum every day and I'm sure thought they knew her well would ask "would you like a coffee Mary?" no response, they walk away and 30 seconds later "yes please " my best suggestion is to sit with your client for as long as they need to tell you what is in their head. Don't rapid fire questions at them, stick with the same question till they respond, then verify your understanding of the response if necessary. Ask if they want to be read to, listen to music, taken outside, mum loved it when someone brought a dog in, also audio books. She also loved having the telly on even if she couldn't see it.

[adrianna60]

Hi Darkbuterfli, so wonderful that you have dropped by to ask this question. I think you have been given very good advice. I've spent time quite a bit of quality time with folks who were very ill or dying and now my sister has PSP. One of the things I think caregivers and professionals need always remember is that there is behind the disabilities a person who still has feelings and who is trapped in a very terrible situation. I have often seen caregivers talk over and above: rather than directly to individuals who are ill as if they are incapable of thought or do not have a voice. There are so many different ways to communicate with people. Lack of response from someone struggling does not mean lack of interest, but it is often treated that way. I hope my response helps a little. A little TLC and a listening ear do go a long way and are very much appreciated. It also shows family that there is care rather than simply a clinical and impersonal approach.

Best of regards,

Adrianna

[Katiebow]

I try to keep conversing with Ben but know I could do better as he gets very frustrated when he tries respond, which he always tries to do even if I'm not really expecting him to try. I also find it very sad that good friends aren't able to deal with the way he is even although they no he fully understands everything being said. He loves listening to radio 4 and will often comment on things being discussed, unfortunately I can't always make out what he is trying to tell me. Ben tried audio books but often fell asleep or lost concentration, reading was one of his pleasure before his ability to read was robbed from him. My experience is that many of our male friends find it the more difficult to try to communicate with him, including one of our sons, he feels overwhelmed seeing his Dad this way and I have to remind him that his Dad needs to feel he is loved. So sad.

Love Kate xx

[Darkbuterfli]

Thank you all for the wonderful advice and tips. I talk to my client the whole time I am there she seems to be responding well. Some days are good and some are bad but yesterday when I was getting her into the shower she said I like the stars on your feet! I was so excited that I got more than yes, no or good! We listen to music and I believe she is enjoying our time. I hope so because she is the best part of my day. Keep looking for those silver linings everyone.