I feel like hitting my head on a brick wall, George is refusing to take his medication , feel like running away, I am feeling really down and depressed, he just laughs at me when I am trying to get him to take his medication, as anyone else got this problem, I think I have already asked this before, my head is not working properly.
He fell over last night trying to wheel the frame into the bedroom, lucky our son Peter was awake and he helped me get him up, it was heart breaking because he kept saying thank you so much Peter, and he nearly started to cry, sad time for the three off us, this unfair horrible PSP has taken our retirement away from us, so unfair, I am finding it hard to cope, especially when refuses to take his medication. Sorry to moan but just feel bad the last few weeks. Nurse from Isobel hospice is coming tomorrow, she may be able to help to get us the care George needs. Love to you all Yvonne xxxxxx
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Big cyber hug to you. We descused this at a carers meeting and I think 95% of men go through a stage of refusing there medication. It seems to be something that they can control So they will. Have a chat with the gp and see if there is anything that can be stopped or even ask if it can be got in liquid form because he might be having trouble swallowing the tablets. Brian only takes amantadine now and he has that in syrup form. Hope this helps. Janexx
Hugs to you Yvonne, it's so unbearable isn't it , I go to bed and cry into the pillow for the man I've lost and the retirement we've lost and I'm sorry for myself too. It's all the emotions rolled together isn't it. I hate the laughing at me , then we have a few cross words, it's all pretty pointless really , nothing changes.i think the illness makes men more stubborn, my husband does exactly the opposite of anything I ask. The showering part is the worst , I just dread it, he won't swill off soap or let me and thinks that's funny .
Oh well Yvonne as someone else on here said.....it's onward and upward.......tomorrow's another day. Thinking of you and all the other sufferers and carers struggling.xxxx
I agree with Jane and suggest you talk to his GP. My husband isn't on any medication for PSP apart from drops under his tongue for saliva control. He has taken some in the past but after a while it was realised they weren't improving anything so the neurologist said we may as well stop. The tablets he takes are for the control of Ulcerative colitis. Although my husband can't swallow solid food, he has no problem with tablets taken with yoghurt. It must be so hard for you when he laughs and refuses. What will happen if he doesn't take them? Is the battle necessary?
I do hope, for both your sakes this can be resolved.
Thank you all for your replies I have got him liquid form for his diabetics, and he has s tablet for his blood pressure, and one for his depression, and one at night for colesterol. His is on citrapram for the depression which has helped him enormously, I could not go through that shouting and aggressive behaviour that we had before, it was so bad, will talk to GP again, we can't stop any of the tablets as he needs them, if the diabetes gets out of control, he gets really unwell he can't control his urine, which is already a problem, so what can you do, men for you love to you all Yvonne xxxxxx
hi Yvonne I think I would say to George ok if you want to be more sick than you are just leave them off then we wont worry about them and walk away from him he will probably laugh but don't worry about it just keep walking away see what happens mate you have nothing to lose all the best peter jones queensland Australia psp sufferer
Hi Peter, that's what I wanted to say but thought it would sound callous. From you, with PSP, it sounds OK. How are you doing? Colin got over the respiratory infection and now he is off antibiotics, the colitis is improving. Now he has a sore on his bottom which isn't good if you are sitting most of the day. He has an air cushion but he keeps playing with it like giant bubble wrap so I'm sure he will burst it one day. I wonder how loud the bang will be. Summer seems to be arriving early this year with temperatures above 20 degrees expected today. You are probably thinking that is a winter temperature but it is hot enough for me. It's so nice to go out without fighting to dress Colin in coats, scarves, gloves etc. Now I can just hoist him into his wheelchair and off we go, fleece in bag just in case. We went to some beautiful gardens on Thursday, a blaze of spring flowers..beautiful and as there were 20 of us, their was a lot of conversation, laughter and noisy afternoon tea session. When I asked him if he was enjoying it, thumbs went up and everyone directed conversation to him as well. It was one of those, things can still be good days.
It's nice to know that good days can still be had and that a little bit of sunshine can make all the difference can't it?
After reading your reply I was interested to know what type of hoist you use for your husband?
The OT have told me that I will have to have tracking hoist because I wouldn't be able to use a full hoist by myself....we have tried everything else for transfers so they are putting the wheels in motion to see about the tracking hoist.........things have been quite difficult lately and I just need some piece of mind...and some sunshine!
Hi DenB, Colin can still stand providing he is supported so we have a standing hoist. The band goes round his waist and then hooks onto the arms of the hoist. His feet go onto a platform. When the hoist is raised it stands him up so I can swing him round to lower him onto commode/bed/chair etc. The OT did look at putting tracking in here but decided, at the moment, it will be difficult getting it from one room to another. It may come though. She said most problems can be overcome if they have to be but the standing hoist is OK for now. I use it on my own, as do two sitters Inhave from Crossroads. The night carers, however, are not permitted to use it on their own so if Colin needs the commode in the night, the carer has to wake me up to help her. Fortunately it doesn't happen very often. I'd be interested to hear how you get on with the tracking hoist once it is up and running.
Hi Yvonne - my grandad used to do the same, my poor nan would get so mad at him because of how stubborn he would be. A Turning point for him was when he realised he was getting iller and would keep falling over, he was a really tall man and my nan is little so it was getting extremely hard for her to pick him up. If I learnt anything from this illness it was to just respect his decisions but be there for my nan. People don't always see the knock on affect it has on the spouse. Make sure you are still doing things for you, whether that's shopping, or going for a coffee etc Just to give yourself so,e rest bite xxxx
Yvonne it is so hard isn't it. But getting all these positive replies will, I am sure, cheer you up even if only for a short time. It's my guy's 68th birthday today and I was at a loss as to what to do. My daughter who was here last week (we live in southern Turkey) said I should take him out for a long drive as he does enjoy riding in the car. So we shall go to Cat Rescue Centre where he can commune with kittens; then head up into mountains, many still with snow on peaks while citrus is in bloom below; then to cafe where I shall get them to put a candle on a cupcake, home to lamb chops for dinner. I hate lamb but it is his favourite, so the chops are marinading as I write. He has no idea about any of this. We are both still in dressing gowns and listening to Radio 4 via internet as I write. But sun is shining and we shall be off soon. I think the isolation that can come with caring at home is the worst aspect. Fortunately the internet is a boon. And do find time for yourself - I have an hour each morning while he stays in bed and a couple at night after he's gone to bed. That time keeps me sane and this forum helps too as I am sure you will agree. As I always say on here......we keep plodding on. Take care.
Thank you all for your comments will try just walking away, glad Colin is feeling better, pattz have a lovely day, is is so amazing that you can start off in sunshine for your drive and a couple of hours later it is cold, George comes from a village in the troods mountains in Cyprus, and my brother is in Nicosia he say it is 30 degrees the other day, but I saw in the Internet it had been snowing up in troods mountains. Happy birthday to your husband and have a lovely day, it is going to be 20 here today, a lady comes and sits with George this afternoon will take the dog out for a long walk and clear all the cobwebs out of my head Yvonne xxxxxxx
Is it possible that due to swallowing issues he doesn't want to take meds? Try getting his meds made into liquid compounds. I did that and it worked beautifully. Sad disease for all involved. Hang in there and be a hero to those around you. Jimbo
Tal goes through periods of refusing pills. Sometimes I find them in the chair cushion. He thinks he's tricking me. Ha ha ha. I try pointing out what each one is for, and especially , the Amantadine, which I and HIS FRIENDS can tell when he skips it. I tell him how his head falls over and hangs in his food, and makes him look like a sick helpless old man. (sometimes in a loud angry voice, I'm afraid.). It works for a couple of weeks. Jill
Yes Jill have done what Peter Told me to do I explained what the tablets are for and just walk away, he takes some, but does not want to take the tablet for his depression, which I really would like him to take, as a few years ago he was very aggressive, don't think I could handle this again, with all the extra work, washing cleaning, feel so tired, have decided that pyjamas do not need ironing just take the out tumble dryer and fold them as well as a lot of other stuff. Feel guilty for it but it looks fine, we get through 2 pairs a day, George won't get dressed only when he goes to centre, so much washing, oh well one day at the time, that is all you can do, and I do like a tidy house, that's me I think the kids get frustrated with me, but I can't help it, Yvonne xxxxxxxx
Yvonne - Sending lots of hugs your way. The whole scenario is so sad. I hope the hospice nurse will be of some help for you. Please take care and know you are in all of our thoughts.
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