Toys For Us?: So T is finally home from a... - PSP Association

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Toys For Us?

Megabrew88
Megabrew88

So T is finally home from a 6 week hospital-to-nursing home (mis) adventure!

After a few days of slightly looking disoriented and confused he seems finally happy and settling down. However, I’m finding it harder and harder to entertain him or get him interested in something so he doesn’t bolt out of his chair and walk about and fall along the way, whilst I’m prepping food etc.

The usual TV programs he used to love, games, iPad, iPhone etc does not interest him (at all) anymore.

What he finds interesting and to get him occupied recently is the buttons (poppers) in his feeding bib, which he happily pops in and out repeatedly which is great for awhile until he gets bored with it.

Anyone experience something similar with their wards? If so, any ideas/recommendations for other toys or gadgets (adult or otherwise) that may keep him occupied?

Also he’s been waking me up in the wee hours in the morning groping for my hand and squeezing it (painfully) hard and giving me a blank stare. He would stop if I tell him he’s hurting me BUT then resume again. I’ve bought a squeeze ball and I’ll see if I can give him that as a substitute to my hand tonight.

Again anyone experience any of these (PSP?) symptoms?

Very baffled😳

32 Replies
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Hi Mb

It's late and I have need of my bed - So please forgive my brief reply.

Your post touched me deeply. It must be hard for you right now.

Do you have a T.V with internet? You might try light shows?

Music? Music is reported to be very good for folk being settled and content.

As for the hand gripping - that part of your post brought a tear to my eye.

With my Liz it is a desperate signal of, "I love you, or I'm scared, or do tell me you are here for me and I am safe." She grips my hand and won't let go. The not letting do is more of a PSP difficulty in that folk can't easily release their grip.

So I tell my lovely she is safe and that I will see her through it all and I give hugs and kisses. She relaxes.

Going on from that - and this might not be where he is at - Occasionally I talk to her of dying death and my lovley's fears and the usual painlessness of it and finally her beliefs and the doubts about them.

This is a overview post. The last part is usually hard to undertake, but I can talk more about how to approach that if you would like.

These are my thoughts they may not fit you situation, but I hope they help a little.

Warmly

Kevin

Megabrew88
Megabrew88 in reply to Kevin_1

Oh Kevin,

Thanks for your usual prompt response.

Yes, I had a suspicion that it’s my B’s (Beloved, Baby, Boss, Brat etc) way of reaching out to me BUT it’s so hard to comprehend his sentiments specially when woken up n hurting.

I will certainly try to approach it from that perspective and see how he responds.

His favourite music is not doing the trick these days as well, but I shall persevere until I find the right mix. I’ll try being a DJ tomorrow.😍

I’ll keep you posted.

Rest well

M

HI Megabrew, For the food prep distraction time: there are some amazing "fidget toys" for kids with ADHD now, if you look on Amazon, things with little moving parts that move back and forth. Or squishy, soft-spikey things, snap bracelets. Maybe something there would help occupy?

Oh thanks. I’ll check amazon again.

Yes John grips my hand as well and he has so much strength in them that sometimes it hurts. He used to have so many interests but just sits now. Try the TV as John will watch programmes that would never have interested him also can you play some music as the other day he was singing along with something old perfectly although has trouble with the spoken word x

Oh yes, it’s real bone crunching grip along with a blank (trance like) stare and always in the wee hours of the morning, which is really worrying and scaring me.

Is this a PSP symptom?

Thanks I’ll put on my DJ cap later to find out what music is he interested in these days as he’s completely gone off his usual preference in music (and everything).

Kevin_1
Kevin_1 in reply to Megabrew88

Yes the 'bone clenching grip' and the need to ask them to release your hand is very much a PSP symptom.

Brenive
Brenive in reply to Kevin_1

Thanks for the info kevin, Ivor has just started squeezing my hand hard , ...its painful sometimes, ...Brenda xx

Kevin_1
Kevin_1 in reply to Brenive

It is! Liz does the same to me.

xx

Megabrew88
Megabrew88 in reply to Kevin_1

Oh glad to hear that it’s not another sinister monster😩

Kevin_1
Kevin_1 in reply to Megabrew88

There are plenty of those!

You sound like you are doing a stirling job.

But what a fight it is!

Dear Meg

I'm so glad you've got him home at last. I think the problems you describe are very typical of PSP. The hand gripping is probably seeking reassurance as I expect he is feeling insecure after his stay in hospital. I do think it is a good thing to keep talking about the future even if he can't respond. Tell him that you will always look after him, even though you may not always be able to be there all the time, for example if he has to go into hospital again or if you need to get some respite care. I think it's important not to make promises you may not be able to keep and to be honest about the future, without painting too black a picture!

As far as keeping occupied is concerned, we had lots of problems with that once TV failed to interest any more. We did try talking books and podcasts but he soon found it too difficult to concentrate on those as well. Perhaps as the weather gets better he will enjoy getting outside more. D used to just enjoy sitting in the garden as much as anything.

Love, Vicki

Megabrew88
Megabrew88 in reply to vlh4444

Thanks Vicki.

I know it’s quite challenging adapting and getting used to our “new normal” BUT I won’t have it any other way. I’m so happy that we are back home together again.

Yes, I have tried talking to him this morning (3am) when we’ve had another “gripping” episode and he settled down a bit. The balls saved my hands for awhile until he started throwing it and going for my hand again.

I will certainly persevere in looking for something that may interest him these days and I can’t wait for the weather to get better so we can start going out of the house.

Hope all’s well with you and hope to see you and Bev soon.

Mx

Squeeze balls are great. If he likes fiddling anything like that. The kids bought him a couple that looked like breasts, just before he died, he thought they were very funny and still had hold of one, when he passed away. Steve watched Sky news for hours on end, or any other mindless drivel. That's why they produce it, people get pleasure and comfort from them.

As for the hand squeezing, enjoy it! He is telling you he loves you and he scared.

A pressure pad for his chair, might be a good idea, so at least you have a two second warning, he is on the move.

Sending big hug and much love

Lots of love

Anne

Brenive
Brenive in reply to Heady

I must get Ivor some of those squeeze balls he'll love them..Brenda

Heady
Heady in reply to Brenive

The district nurse that was caring for Steve at the end, said exactly the same thing!!!

Megabrew88
Megabrew88 in reply to Heady

Thanks Anne.

The Squeeze balls really helped this morning, it saved me a lot of pain. I will look out for those “booby” one, lol

Yes, my B used to watch BBC news loop the whole day too.

I’ve got pressure pads on his chair BUT he bolts out of his chair constantly when bored. I’m sure I’ll find something that Will interest him soon

Heady
Heady in reply to Megabrew88

Have you thought of board games? Steve managed to play Backgammon once a week with a Marie Curie volunteer, right up until the end. Every move took ages, but he could still beat the guy.

Lots of love

Anne

Megabrew88
Megabrew88 in reply to Heady

I’m afraid he’s gone off board games. It’s a shame as he used to be a good chess, back gammon and bridge player BUT he’s completely gone off it!. 😩

Heady
Heady in reply to Megabrew88

Sorry, I don't mean to teach you how to suck eggs, but see if someone else would play with him. I couldn't do anything like this with Steve, didn't have the patience or the skill, but the Marie Curie volunteer, could alway bring out his competitive nature.

Lots of love

Anne

Megabrew88
Megabrew88 in reply to Heady

Hahaha sucking eggs will be a breeze compared to getting my B interested in something these days😍

Heady
Heady in reply to Megabrew88

Remember that feeling! OK, another suggestion - have you tried painting by numbers? Steve managed to do this for a while, even though he couldn't write by then. Gave him a sense of achievement. Make sure it's in an area you can clean well. A lot of paint went places it shouldn't have! If all else fails, good olde handcuffs to the chair!!!

Lots of love

Anne

Megabrew88
Megabrew88 in reply to Heady

Hahaha Anne you’re so funny,

Yes handcuffs definitely crossed my mind😍

And a crash helmet!!!

Heady
Heady in reply to Megabrew88

Tried that. Got him a rugby scull helmet. Yes you have guessed, he found the sharpest stone in the garden and where did he land on it, on one of the holes in the cap!!! Thankfully no stitches that time.

It is a nightmare, my heart goes out to you, going through all of this.

Lots of love

Anne

Megabrew88
Megabrew88 in reply to Heady

😍

Ratcliffe
Ratcliffe in reply to Heady

I really wish I had thought of that.... I bet that would have gone down well!

Yesthe squezzing of the hands hurts a lot xxxx

Yes and I’m too scared he’ll break my bones! 😩

Thank you all for your insightful responses.

I certainly look at this “gripping” episodes in a different light, knowing that it’s just just my B trying to reach out to me, albeit in a very inconvenient time and way, and not yet another “monster”.

I feel less scared and vulnerable and will be better able to deal with him tonight with Squeeze balls and a lot of love and tips (from you guys) on hand.

Mx

Hi, just an idea, it's a bit off the wall but David really liked this.

If you have any sort of shopping channel, QVC or Ideal World etc, try putting them on for a bit. Whilst it can be the most boring TV ever, David found he could follow the conversations between the presenters etc and it made sense. I think it's because on normal to programmes there is lots of shouting, bangs crashes and explosions, and the voice volume goes up and down so much that he couldn't focus, whereas most of the time the point of the shopping channels is to talk to you and persuade you to buy the product, that most of the presentation is done at normal perch levels and David could cope with that.

It probably helped that David had watched the channels before he got ill sometimes, but it could be worth a go, just in the background.

Also, if he is enjoying the press studs, how about a sheet of bubblewrap to pop, we all love a good bubblewrap session 😀

Megabrew88
Megabrew88 in reply to Ratcliffe

Thanks Derek,

I’ll try that too. Although my B hates shopping in general, who knows it may just do the trick as his mood and preferences has changed so much of late.

😳

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