I AM GOING NUTS. DON HAS TWO PILL CASES, WHICH OF COURSE I FILL FOR HIM, ONE FOR THE AM AND ONE FOR THE PM. I WAS STANDING RIGHT NEXT TO HIM AND HE WAS TAKING A PILL FROM THE ONE BOTTLE I KEEP ON THE COUNTER FOR HIM TO TAKE DURING THE DAY. FORTUNATELY, I TURNED MY HEAD AND MADE HIM SPIT IT OUT. ASKED HIM WHY HE WAS TAKING IT FROM THE BOTTLE AND HE SAID I HAD TO. THE PILL CASE STILL HAD ALL OF THE PILLS IN IT FOR TONIGHT. CONSIDERING ATTACHING HIS WALKER TO HIS WRIST SINCE HE IS STILL WALKING AWAY FROM IT EVEN WHEN IT IS RIGHT NEXT TO HIM. WHAT DO I DO BUT YELL AT HIM ALL OF THE TIME. HAS BEEN A REALLY ROTTEN DAY. I DO'T KNOW WHAT TO DO ANYMORE.
TAKING MEDS: I AM GOING NUTS. DON HAS TWO... - PSP Association
TAKING MEDS
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Auddonz
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It is so hard to try to be calm and maintain all the time. And it's not normal. If we are talking about those of us in a marriage or partnership, all through our relationships we have all had little spats or disagreements or even some major battles. I think trying to hold this all in is just so very opposite of what we are use to, or what the normal way a relationship works. But it isn't normal anymore. We are the watcher, the gatekeeper, the caregiver, the protector of the one we love. I think we all doing a very good job and have to expect to lose our tempers. It is just life. And in some way I do believe our loved ones understand this.
As far as the pills on the counter, you might have to put that one away and divvy it out yourself, if you are available during the day. I got back to work in August and so far D is on a.m. and p.m. meds. So I will be able to dish both of those out as I normally do now. But obviously as this disease goes downhill all that may change.
Keep up the good work. We are all with you, Auddonz.
Auddonz• in reply to
jmhk, I do understand but am so very frustrated. I am home with him 24/7. I am petrified to leave him home alone and I hate going anywhere alone since I am afraid something will happen to him. Yes I am starting to lose my temper but I know he doesn't understand what I am trying so hard to get through to him. He is dozing on the sofa again which he does most of the day. He just is not the wonderful man I met 60 years ago. Does he understand, I don't think so. My personal opinion for what it is worth. You put it very well. Your words are so true. Thank You!
Audrey (aka auddonz xoxo
Sorry you had a bad day. It is so hard not to get frustrated when our loved ones do silly things which we can see put them in danger or just make everything more difficult. When my husband was walking he used to always turn in the wrong direction. If he needed to go through a doorway on his right, for instance, he would turn to the left instead and do a 360 degree turn. It used to drive me mad and was also the cause of many falls. He is in his wheelchair full time now and, although that is safer and has cut out most of the falls, he still manages to do silly things in it!
Hope you have a better day today.
Vicki
Some time ago, one of our grandsons said, "Nanna B, is grandad turning into a baby again". I explained what was happening and that he still thinks like a grownup but at the same time I thought, if he was he would be at the toddler stage. You keep tablets away from toddlers. I had to put all meds in a high cupboard as my husband was doing the same as yours. If he saw it he would take it.
It is frustrating but unlike toddlers, who eventually grow to know how to stay safe, those with PSP have no concept of danger.
One day he will use his walker without being told but probably not before he has fallen many times, or you have saved him from falling.
You sound as if you need a break, if not longer then just a few hours to do something for you. Any chance?
I do hope today is better for you both.
Sending you a big virtual hug.
X
Yes, all the same here! It's so hard to foresee all the dangers, and he doesn't learn from his mistakes, so the repetition is endless. Oh well! On we go!
Well easterncedar at least today he sat down to put his underwear on, hooray. I don't understand why he is so tired all of the time. After each meal he says I have to go to sleep. Med or condition?
"Condition" is quite possible. It takes so much energy to do the simplest things, to think, to speak, that my guy can be exhausted by seemingly simple exertions.A long phone call or a doctor's visit where he has to answer questions can knock him right over. And then he's up and running as soon as I go down for a nap!
Sounds like my Don. Whenever I think he is sleeping and try to take a nap, he is up. I am so tired and he is asking where are we going. Which is no where since I am exhausted.
I absolutely recognise this behaviour. Both mine and my husbands. F does almost exactly the same, I suggest he sits down before starting to eat. He says yes ok when I' finished" . He then don't move. Then there's the pills. I've given up on a pill dispenser. SINEMET only calms him a little and if he takes too many he feels sick, so he's learnt. I take the view that it's the independence that's the medicine. And yes I know that screaming frustration. I worry about shouting too much and being a bully but sometimes it's the only way to get through the scrambled brain. I have a new sport, I never normal swear but cold callers now get a mouthful. They are great therapy and I do warn them it's Comming first.
The way you feel is absolutely normal and being able to give yourself permission to feel like that is most of the way to rationalising the feeling, displacing the guilt and feeling better. My thoughts are with you.
Hi, I know where you are coming from. S too, has two pill cases. I have an alarm that goes off to say when each pill is due. This was S's last bit of independence. He heard the alarm, then would have to go and take his pills. The rows the followed, well.... He was simply refusing go at the proper time, so ended up taking pills that weren't meant to take at the same time. Apparently Sinemet and Warfarin, should not be taken at the same time. In the end I have given up. I now issue the pills at the right time. I think you just have to accept that pills are your responsibility and keep them out of harms way. I know this yet another part of Don's life you have taken over, but it's far less stressful, and safer, to just hand at pills at the correct time, than fight over what Don is doing!
Lots of love
Heady
I used to have 4 times a day for pills which I had to remember but since the diagnoses in March all meds changed and no more sinemet as it was doing no good so now down to warfarin and acid reflux pill along with some vitamins. 2 times a day.
Yes I agree Heady. It was just so frustrating that I was standing right next to him, taking out my own pills and turned to see him holding the pill between his lips getting ready to have some milk to wash it down. I said where did you get that and he said from the bottle. I said where is your pill case and he said in the cabinet. I took it out and of course yesterdays dose was still in there. He would have taken a double dose of sinemet if I hadn't caught it. D takes Sinemet and Warfarin at nite without an issue. Along with his high blood pressure pills and and diazapan. Five pills at night and 7 in the morning and 2 more during the day. That would be the 2 sinemet during the day.
Love back,
Audrey (aka auddonz)
Oh dear, is there no end to the countless problems that you gave to encounters long the long PSP road. I do hope that your day gets better it is so frustrating having to constantly remind, Ben for his own safety, to hold onto rails etc
I hope that when Ben starts taking his pills at inappropriate times I remember to do it as gave a job remembering my own medication. Fingers crossed.
I too recognise all this strange behaviour, I often find Keith standing in the middle of a room without his walker and when I ask him why he hasn't used it he replies with something like I didn't know I had to!
When I lose it, like most of us do at times, he calls me a bully and asks why his carers don't talk to him like that. Carers only see a very small part of the daily problems, they can walk away and forget, we have the worry 24/7!
It is so so frustrating to watch the continual decline and not be able to get your message across to them that they are putting themselves in danger. Keith doesn't grip onto anything properly, he kind of rests the end of his fingers onto his walker and rails, he pushes his walker way out in front of him to the point that he is on his tiptoes trying to keep up with it! Same when he reaches out for grab rails far too far away from him!
I feel as though I am constantly telling him how to do things safely, I don't think he realises that it's only because I am concerned for his safety, he just thinks I'm nagging him!
Hope today is better for you!
Love and hugs....Pat xx
Sorry to hear you are having a bad day. M used to go for her tablets at first but I learned to lock the pills away in an old tin box I had only key, to stop her over medicating, I could then ensure pills only taken at meal times. Unfortunately no longer needed as she is no longer mobile and is nil by mouth all by PEG. It is a strategy that worked for me, though M used to get frustrated and worried that she had not had her pills, But I knew there was no chance of overdose. best wishes Tim
Hear, hear to all the above messages. The constant vigilance, only to turn around for a second and your loved one is doing something hazardous is very, very hard. Of course we all snap occasionally - we are human after all and I say to P often that although he has problems, I have his AND mine to contend with.
Wow I am going through the exact same things! I cannot get him to stay directly behind his walker ....it\s the lawn mower effect way out in front of him....So yesterday I attached the excersize band on one handle then he wraps it around him securing walker closer to his body...it does seem to help...we had stopped doing that when we changed walkers. But he took right back to it when I reattached it.
And the stupid drug thing....I wake up in the middle of the night and he has just taken another sleeping pill.....So now those will be hidden or "in a secure place"...I hate doing that in that I feel like I am taking more of his adulthood away....but his life is gonna go away if he OD's on something.......I just hope I can find his drugs again....I've got a pill box too.....just never use it...Well I wish both you and I luck!
AVB
We will get through it abirke, one way or another. I told him I was going to attach his wrist to the walker to make him use it but that got him very angry and upset so I guess won't be doing that. I am so tired of saying the same things over and over. I hope I am not getting sick my throat is hurting me. That is all I need.
Audrey (aka auddonz)
Maybe just PUT the sport band on his walker, when he's in a good mood show him how much it will help him......
Wait does he use a walker? . B does at all times unless he is falling over it, to the side, or it falling on him!haha
We are Queens of Reiteration! I'll say it again, Queens of Reiteration
Yes he does use a walker abirke. He was told use it all the time by the rehab facility. He just walks away from it with me yelling use if because if you fall and break your hip the mortality rate for men is a year. Not the same for women. Interesting? Love your Queens of Reiteration. What is a sport band?
Sport band or exercise band or resistance band is a stretchy band about 3 feet long that (ladies usually) use while they do their exercises. it gives them more resistance and thus works the muscles more. It can be tied to one handle of the walker and stretched around Bs waist and he holds on to other end. This way if he falls he can let go of band and there isn't some greater catastrophe.
I don't know ,,,,does he have a friend who could help him with whats going on....The wives/mates always seem to get ignored or yelled at. But if someone else says same thing It's heard!
Goodluck darlin,
AVB
Oh how I wish the it was that easy with George he never wants to take his pills, we have a fight for him to take them Yvonne x
Thank goodness he doesn't care about taking them. Wish I could make him do his exercises though, that is a challenge/
Audrey xo
Yes here here xxxxx
George to? Next week is his last week of PT and OT, nuts.
Worse yet, one day recently I got distracted while I was getting his pills and a glass of water, and I suddenly noticed I was drinking the water and the pills were gone from my hand - I'd taken them myself! Yipes! I was horrified, but no (obvious) harm done. Gave me a shock, though. Am I losing my mind or just in desperate need of sleep?
Hi Easterncedar, I would say a bit of both! Well, if you are like me, that is!!! My brain is so fuzzy I can't think straight. Much less make any decisions, or do anything! And we all know, everyone of us is so very tired!!!
Glad you are OK with taking your guys meds! Could have been dangerous! Or interesting!!! Depending on which pills you took!
Lots of love
Heady
Thanks, Heady! I have been getting more sleep since then and am hopeful that I'm getting back to normal. Or maybe my brain so far gone I don't remember what normal is - but it's okay either way! Luckily he isn't taking much in the way of drugs: selegiline, sertraline and CoQ10. Nothing interesting or fun. I have to get my fun over ice.
See you at Jill's party tomorrow?
No, won't be able to make it. Crashed big style tonight! Daughter has taken over and I'm off to spend a couple of nights with my sister. Say Hi, for me! I will be listening to " the things you for love". Can't remember who sang it!!!!
Lots of love
Heady
sleep deprivation very very bad on brain!
This site and all of you have pretty much kept me sort of sane.Hmm, can't find the reply I sent to you eastern this morning about the pills. Anyway here goes again. I would have called a nurse through your insurance co, if they supply one. AARP United Health Care has one 24/7. which is what we have. We are all sleep deprived, you are far from loosing your mind 
In my case I think I am heading for a nervous breakdown. Thinking of calling the Dtr for anti depression pills or whatever you cal them but hate taking anymore pills. So I will just yell to all of you which is my where to go when I am very upset. What would I do without all of you, I don't know. A party where? Would I love to go anywhere!!! BTW does the CoQ10 work?
Love,
Audrey (aka auddonz)
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