What are some activities I can do with my mom?

[mkm1993]

Just little things, she sits at the house and watches tv all day. I can't think of anything that will preoccupie her time better, being that she has barely any motor skills left. I feel like she just moves from chair to chair..its really hard to watch your mom be so down all the time.

[peterjones]

hi mkm 1993 well mate i have a neighbour who sits and watches tv all day and he has'nt got psp hes got the old armchair syndrome what about draughts or ludo she might seem that she has no motor skills left but i bet she knows what is going on inside her even if she cannot voice it now or even the card game of snap i'm not sure what you call these games in the usa or canada you said your' mom 'so i take it you are in one or the other places\\ give it a try and see what happens mate

best wishes to your mum and yourself keep on keeping on god bless peter jones queensland australia psp sufferer

[Macd]

I made sure that my wife June was taken outside every day I would take her shopping and show her what items I was buying in the superstore also to the local park so she could listen and watch the birds even in the rain. For the last year plus she was wheelchair bound. It did take a lot of effort on my part but it keep her looking forward to her daily outings She past away last month after 8 years with PSP but all during these times I made sure that she was very involved with others even when she could not talk, sip tea etc. She did enjoy being with our friends. Books on disc or tape are very good and you could take your partner to the local library and discuss each tape or disc that you would take home to listen to. It is very important to keep them involved with every day life.Good luck.

Richard

[SharonAB]

Dear MKM1993,

Yesterday I met my husband and our young daughter down the local park, John no longer lives in the family home. The park has all the bells and whistles possible including a mini volcano, BBQ's, flying fox, swings etc. John once again did not participate in anything and just sat in one place for two hours despite the fact he still has mobility to move around. So when John spoke about his mobility, difficulties, what is happening in his life I asked why he visited the park if he didn't want to be with daughter as she was playing in another part of the park away from his vision & hearing.

I received a detailed response (which is highly unusual from John). John advised that people don't understand his disease and how it affects him. He said he has no desire at all to be involved and to do things, Instead he saw that he is involved purely by being there and receives great joy for just being around people who are doing things for him to watch and listen to.

I tell this story, because perhaps that is also what your Mom likes- Just to be around what ever is happening and just likes to take it all in - as and when she can?

Regards,

Alana - Western Australia

N.B. Yes, Before John was diagnosed with PSP - I did wonder was he being consumed by the 'potato couch monster' as Peter Jones has eluded many an 'Ausssie male' seems to suffer from (Dig!, Dig!)

[Hidden]

I wonder what your mum enjoyed BEFORE she had PSP? We know that PSP does NOT affect their awareness of what is happening around them, even if they eventually cannot speak. I endorse what the others have already said, and the importance of using some small part of the day for her "social" activity (because I guess she becomes tired easily). It may only be for half an hour, but I think she'll really benefit (inside). I don't know the severity of her motor skill dysfunction, but most physiotherapists think they can squeeze out more activity than seems possible (not sure if you have one).

So, to give examples from my wife (4-5 years with PSP) who has very poor movement and cannot look up or down (but still can use her arms) -she loves being with her grandchildren (and children), so an occasional visit lightens her life! I take her to the Multiple Sclerosis group each week for 4 hours (where once she was a volunteer, now they look after her!). She plays Rumikub all morning and has lunch with them. It's a treat to which she always looks forward. A care worker comes twice a week for a short time and she plays Scrabble, but mainly talks (in a soft, breathless voice) about her past and present family life. If the weather is good (and usually is, since we live in Perth, Australia), the carer may push her in her wheelchair to a park 5 minutes away. All these things stimulate her (and the tiredness afterwards is all part of PSP).

She loved gardening, so outside the door where she sits we have two eye-level large plantars with lots of colourful plants she can "see" (it's sad she can no longer do any gardening at all).

So these are just examples, but your mum may be more restricted and may not be able to do such things. If she can still see a bit (because she watches TV) perhaps simple tasks like rearranging old photos with you into a new album would bring back lovely memories for her.

I guess like my wife she cannot write anymore. I organise for her older sister to come to write letters for my wife - she sort of dictates simple letters to friends in the UK etc that she hasn't seen for a long time. These things also bring back memories, and some remind her of many good and humorous times - she then can laugh (sometimes uncontrollably and wees herself because of the PSP - but it's all good stimulatory stuff!)

I do hope you'll find some little ways to stimulate her and give her more than the tv to watch.

All the best to you and your mum. Take care.

[JudyJ in reply to Hidden]

Your wife is so lucky to have you

[Hidden]

I just noticed Alana's answer, and this also may be your mom's disposition. However, perhaps blokes are different from women in this respect - the bloke is happy to watch whatever is happening around him, but the ladies like to be involved. Just a bit of amateur psychology, but I probably don't know what I'm talking about!

[Hidden]

Mum was the same, first a couch potato and then not really doing anything. But she did like it when we got out the photos. Also at the care home we would play boules and this was such fun. Mum got the giggles as her hand froze on one occasion and then the boule just sort of dribbled out, her laughter was so infectious it had us all going! She enjoyed 'watching' flower arranging -more than anything for the conversation. I used to take her out every day even if it was around the care home-we were lucky as it was a huge place. We came across a room decorated like the war era and that was great, especially as we found some old records.They also had singers in and mum would join in with that- perhaps you could dig out some old records or songs.She also loved sitting outside and listening to the birds and sounds.

I know its hard but they don't need too much to get tired.

[mkm1993]

Thank you so much everyone I will be sure to take everyone's advice, I appreciate it

[jimandsharynp]

Long drives, visit a park, zoo, pub/bar, basically anything other than sitting home.

Jimbo

[JudyJ]

As a younger person, 54, with PSP and symptoms that are progressing faster than I'd hoped, she might be content as she is. I'm not saying not to try different things with her to see if she responds well, but the chronic exhaustion that goes with PSP is understated. In other words, don't be hard on yourself if you are unable to find activities that she responds to.

Does she/you have a pet/s? I have several & they make me smile several times a day. I keep grooming tools by my bedside and find that a very soothing and comforting thing to do.

I like the idea of going thru pictures too; one picture can be very inspirational, if even for awhile. The same goes with music which I love; a random song can inspire me to feel better, get up and get going, even for a while.

All my best to you and your Mom.

Judy J

[Tweetybird21]

I too agree with the music suggestions, my Mum's mood instantly lifts when I put on a bit of Roy Orbison! It's a very powerful tool, hope it brings you and your Mum some joy. xx