Hello, my dad has CBD and lives in a warden-assisted flat with Carers coming in four times daily. I organise his shopping and his finances and spend a couple of afternoons a week with him and my young daughter. I wish I could spend more time with him, but it's really hard, particularly as I don't drive.
He mainly just watches TV nowadays, he says he can't read any more, which is a huge shame as he used to read all the time. He is starting to fumble with drinks etc and drop them more often. He has real trouble getting up and down from his chair (he has an electric riser one) and always wants me to pull him up, which I can't do as I have pelvic problems (and he weighs 16.5 stone and I weigh 9.5!).
I was wondering what I can do to make life more pleasurable/easier for him? I've set up a Lovefilm subscription for him, which he seems to quite enjoy getting in the post. I've suggested hiring a wheelchair to go on outings, but he just clams up, which is his way of dealing with conversations he doesn't want to have. What else can I suggest? Any hints or tips or gadgets that people have found helpful would be really appreciated.
oh - and any sort of telephone that people have found good? He seems to be missing a lot of calls these days as he can't always pick it up.
Thanks
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Mikocat
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A couple of tips regarding the the things you mention. My husband has PSP. I bought a second hand wheel chair quite early on, he had a bad day and couldn't walk! Now we just use it occasionally. Take it places, we know S will not be able to walk that far, he walks has far as he can, then get into the chair, when tired. It's great, we went for a really long walk the other day, a lot further than we have done for years. Did him and me a power of good! Great when we were on holiday. We took the chariot out everyday, some days didn't use it al all, others, quite a bit. What it did give us both, was peace of mind! I didn't have to worry about going to far from the hotel, S didn't get tired, at all, because he was able to take a rest when needed. Carried the shopping as well! So in a nut shell, you can actually do more with a wheel chair, than without, even if you DONT use it?
The telephone, I know what you mean. Today's phones with their tiny buttons are a nightmare. See if you can find and old fashioned one. That might be easier for him.
Our OT has given S a special knife and fork, as he doesn't hold anything properly. This has helped. They are really very good, would grace any good Bistro! Get a cup with a lid on, at least the drinks won't go everywhere. Again, if your Dad is like S, he won't have to use it all the time, it just helps remind him how to hold a cup!
Someone suggested to us recently, Talking books. At least it a break from the telly and Sky News!
As for getting out of the chair. You must be firm and make him do it himself! You could try having a walking frame close, so he can use it to steady himself, when the chair has got him up, it's probably what he needs, rather than actually being pulled up!
Hope some of this helps. Look forward to hearing what the other will come up with. Let's us know if you think of anything. We all need every little hint that is going!!!
hi heady welolo I agree withy what5nyo0u have said up until getting out of a chair I knows carers have there own special ways of doing things but honestly mate sometimes the chairs are to low and have no supporting arms on and of course sometimes we cannot support our own bodyweight I have been pretty fit all my life until psp caught hold of me and shook me up a bit
but I have found that I just cannot get out of a chair unless it has been raised up for me like my recliner and my bed have all been raised its the dining room chairs I have trouble with they say when you get off of a chair you should ,lean forward so your nose just goes past your toes but not to far otherwise you will lose your balance anyway mate I beg to differ on making s get out of the chair on hes own perhaps he cannot support hes own bodyweight either matey anyway you would know what S is capable off me old darling wouldnt you I know people have thought I was bunging it on when my face goes out in a big balloon and I excert myself trying to get out and grunt and groan its pitiful believe me well mate I will say goodnight to you always read your comments which are very lively at times but get you thinking your old mate peter jones queensland australia psp sufferer and no falls this week thank goodness
Hi Peter, glad no falls this week! S took a tumble at the gym. Doing sit to stands, but instead of sitting, threw himself backwards, chair and all. Gym instructor and I managed to reach him just before his head hit the floor, so no damage. Just a bit of hurt pride and slightly winded.
I know what you are saying about getting into and out of chairs. S has the same problem. Mikocat said her Dad had an electric riser chair, so I did presume that it would be at the right height and with arms and able to get him to a standing position, so all he would need is a extra bit of balance. Can't imagine he would be able to get that far, if he couldn't stand by himself!
Wouldn't want to be in the same room as you and S, getting out of chairs. He too blows up like a balloon and makes such a row, you would like think someone is trying to do him mischief!!!
My mantra for S to get up, is "knees over toes, shoulders over knees" and the big thing, toes on the ground, he always likes his to be pointing to the ceiling for some reason. Never works!!! This PSP has some weird and wonderful ways of working at times, it's no wonder you all end up on the floor. When I watch S struggling to move in totally the wrong way at times, it's a wonder that he doesn't spend more time flat on his back. Perhaps, it's his beautiful, caring wife that saves him! Don't tell him that, he wouldn't believe you!!!
hi heady thank for your reply mate s threw himself at the chair mate thats no good is it having said that I must admit to doing the same thing now and again until I got my head around it which takes a little while to sink in I was not sure if this was psp or older age mate I know psp gets the blame for nearly everything that goes on now
if you feel a bit crook oh that's psp its getting so I do not know the difference between being sick or psp but never mind \\\\\we have just got a shower of rain that will lay the dust I know thats not psp mate\\ anyway heady I will say cheerio for now take care best wishes to s and I will not say a word to s about you being beautiful and the best carer there is going \to try and save him from falling mate he knows that already see yer
I think his problem is that he can't think bout the processes involved to stand up, or rather he overthinks it instead of being able to just do it. Does that make sense?
I know exactly what you mean. Sometimes I feel as if S has forgotten how to move or do certain things. He is always trying to get up, with only his heels on the ground, has no comprehension that he should put his toes on the ground as well. With the physio, or when we try doing sit to stand exercises, he can get up beautifully, as soon as the exercise stops, he hasn't a clue how to get out of the chair!!!
The way I try and explain what is happening to my husband, when he is struggling is - the messages from the brain are not getting through to his legs, for example, so they don't move properly. One muscle gets email, but the others are relying on pigeon post, therefore the muscles are constantly fighting each other. So either he can't get up, or he falls, or whatever!
It doesn't help him move any better, but it does give him something to think about, to see if he can come up with a solution. Ok, that may only last a couple of minutes, but that better than nothing!
I have an apple iPad for when my speech goes with the PROLOQUE TO GO ON it and provided free by the local technology trust = it is great4 playing games on at the emoment like CAR DGAMES (solitaire and spider solitaire) CANDY CRUSH /PET RESCUE /FARM HEROES SAGA/ BUBBLE WITCH /etc etc Can he use a keyboard or a mouse ? not needed with these things just touch screen
they calm me down when i am stressed and are good 4 journeys in the car too
Another thing that he might try is watching TV but recording stuff too to watch when it suits him
i agree the wheelchair is great to have in the car for when i need it outside =always now as i have trouble walking at all- with my partner i am worse - and it would be great just to go round the local park again with him or anyone!
i have great trouble getting up from a chair which is not at a good height too and did not want a riser / recliner,a s it made me feel nauseous and dizzy
any more hint s about not throwing myself into chairs and therefore lessen my falls falls on my deaf ears i am afraid and it is so difficult with this PSP having to learn things like walking slowly when ia m doing everything too quickly and used to doing every thing quickly -= cannot multi task any more either
i never liked being controlled anyway and find it v difficult to listen and take heed of what other s ar e saying for my own good i know which means i am a terrible danger ot myself and others = pulling them over with me when i fall etc and worrying them when i crash down on the floor
my eating habits are v bad now as well - like peter jones of australia i eat every meal as fi ti were my last b ut do not get indigestion or hiccups at all -i occasionally choke on food but not too much and if i choke it is early in the am and i cough for a couple of hours after that
this si more about me llvigin with this PSP than offering any help to you i know
(and the bowel and urinary problems cannot be ignored either)
but i am good (thumbs up) as they say and still get to a tai chi class once a week =/ a local parkinsons group and choir once a week a hairdo and dam just about to go back to the local hospice as a day patient which is great for relaxation and meeting some grea tpeoplso my lif e is totally different now - i shall not fly again anywhere and holidays will be taken as and when inN YORKSHIRE southern SCOTLAND and al l places north of the jAM BUTTY LINE ( A KEN DODD Idea which much appeals to me!)
I have an apple iPad for when my speech goes with the PROLOQUE TO GO ON it and provided free by the local technology trust = it is great4 playing games on at the emoment like CAR DGAMES (solitaire and spider solitaire) CANDY CRUSH /PET RESCUE /FARM HEROES SAGA/ BUBBLE WITCH /etc etc Can he use a keyboard or a mouse ? not needed with these things just touch screen
they calm me down when i am stressed and are good 4 journeys in the car too
Another thing that he might try is watching TV but recording stuff too to watch when it suits him
i agree the wheelchair is great to have in the car for when i need it outside =always now as i have trouble walking at all- with my partner i am worse - and it would be great just to go round the local park again with him or anyone!
i have great trouble getting up from a chair which is not at a good height too and did not want a riser / recliner,a s it made me feel nauseous and dizzy
any more hint s about not throwing myself into chairs and therefore lessen my falls falls on my deaf ears i am afraid and it is so difficult with this PSP having to learn things like walking slowly when ia m doing everything too quickly and used to doing every thing quickly -= cannot multi task any more either
i never liked being controlled anyway and find it v difficult to listen and take heed of what other s ar e saying for my own good i know which means i am a terrible danger ot myself and others = pulling them over with me when i fall etc and worrying them when i crash down on the floor
my eating habits are v bad now as well - like peter jones of australia i eat every meal as fi ti were my last b ut do not get indigestion or hiccups at all -i occasionally choke on food but not too much and if i choke it is early in the am and i cough for a couple of hours after that
this si more about me llvigin with this PSP than offering any help to you i know
(and the bowel and urinary problems cannot be ignored either)
but i am good (thumbs up) as they say and still get to a tai chi class once a week =/ a local parkinsons group and choir once a week a hairdo and dam just about to go back to the local hospice as a day patient which is great for relaxation and meeting some grea tpeoplso my lif e is totally different now - i shall not fly again anywhere and holidays will be taken as and when inN YORKSHIRE southern SCOTLAND and al l places north of the jAM BUTTY LINE ( A KEN DODD Idea which much appeals to me!)
Hi Jill, flying, if you want to, is fine. Just make sure you get Wheel chair assistance. It's great! Someone meets you at check in, and basically does almost everything for you, getting you on and off the plane and delivering you to what ever transport is taking on your onward journey. You miss all the queues and hassle of flying. I love it!!! Makes life easier for S as well!
Thanks to those who have replied, i did wonder about getting dad an old iPad to try. Might be worth a go. I also thought it might be good if he could make FaceTime / skype calls to his granddaughter.
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