My D keeps on forgetting to take his meds. I discovered today that what he was supposed to take yesterday was still in his pill case. I was so tired I lied down and sort of dozed. Can't do that. If I don't stand right next to him, trusting him to take them himself is never going to happen. Tonight he went into bed before it was time and I walked back and forth I don't know how many times. The only up part is that I keep on losing weight, down part I am completely exhausted. Nite all, maybe tomorrow will be a better day.
Hugs,
Auddonz (aka Audrey)
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Auddonz
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Sometimes I forget to have my sweetheart take his, like tonight, but there's nothing that will make so much a difference that it's worth waking him up. Don't fret bout what you can't control, Audrey. And don't fret about what you can, either! If he's asleep, you should be too. Nobody gets out of here alive, after all. Love, ec
ec, I am an A personality person, everything has to be done right or I freak. Trying so hard to make sure that nothing will go wrong. Now I know why he was so off yesterday, balance and so tired. I wish there was something I could do to help him. Beginning to wonder if the sinemet really helps or not. He seems more alert before he takes any of his meds in the morning. Last nite was rotten for him. He was up every hour to go potty and of course if completely exhausted and sleeping, which is what I m going to do now.
Love, Auddonz (aka Audrey)
Hi Audrey, C was never in control of his meds when he had lots to take. I was so glad when the levodopa was finally declared ineffective in August 2014 and I no longer had to ensure he took it. Now he has minimal meds morning and evening before bed which are easy to manage. As easterncedar says, you have to accept that you are doing your best and ensure that you take care of yourself. In other words, keep plodding on........
TY pattz, that is what I m going to try to do. I can't walk around like a zombi all the time. It doesn't do either of us any good. I will keep on plodding.
Roseyuk, I have an alarm set on my phone to remind me but his hearing is not the best so he never hears it. My hubby sleeps a lot during the day as well. Wondering if its from the med.
With so much to do as a carer and often feeling so tired, I actually put alarms on the mobile phone so that my hubby remembers to take and if I have fallen asleep on the sofa it wakes me anyway, maybe worth a try
Sometimes Malc wonders what the alarm is for, but at least it alerts him and I have his tablets in a pill box next to him on the sofa so easy still for him to take and think he is in control of something
I think that the. small child description is so right. Its heartbreaking to see in a loved one who was full of life, laughter and my rock. Still, I had the real him for most of our married life so mustn't grumble. On the tired side, B. woke me up this morning as I didn't hear the doorbell when the Carer came. I was flat out!! Best wishes.x
Exactly Yvonne. They are in a pill case on his walker. Last night he was up every hour and is exhausted today. He is sleeping now and before his aide comes I am going to try and take a short, very sort nap.
That's exactly either on the floor where he spilledd the bottle, in his pocket, or like i said using more than needed. I just took over.....sorry dude.....I'll tell you what and when and how much.....
Yvonne you got it on the nail. I had been so down over the fact that I was watching my hubby become someone I didn't recognise, and I'm upset to say someone I don't particularly like at times due to his irratic behaviour and trantrums. My doctor made me realise that I was actually going through a kind of grieving process, she is wonderful and makes sure she calls me once a month when we have not had a need to go see her - she is a blessing! I am trying hard to focus on the 'Rock' my hubby has been during our many years together and how he helped me so much get hrough and beat my time with cancer. Hard at times but every once in a while there is a glimpse of the man I chose xx
Gilljan, that is the hardest thing for me, who is he now. I don't know After 56 years with him I am am so upset, trying to do everything which includes the things he did, take care of him and I don't know how long I will be able to do it. Scared for sure.
I do hope you have people around that help and that you can talk to, I find that my biggest prob as half the family just do not want to know! Have good friends here in the retirement village but I don't like to keep bothering people. I do have a decent care packag in place for how M is right now. Also have a carer advocate that meets with me for 2 hours each month, my GP calls at least once a month and of course my PSP Care Advisor who is wonderful. I hope I can carry on for sometime yet.
Auddonz, have you looked on the PSP site to see if there is a PSP Specialist Care Adviser that covers your area, I have one through the website and she keeps in touch on occasions by phone and there is of course the helpline - all very helpful and totally understanding. You should also be able to find out from this forum if there is anyone close to you in location who is caring for a relative and maybe that would be good to contact too xx
A, your post rang so true to me as well as G's. Where did he go?
Once in awhile I make a reference to an incident or private joke between up from the past and I am rewarded with a glimmer of recognition in his eyes or a small smile. Other times he looks and acts like he is possessed or a feral animal. I tried to explain to someone that it is so difficult because even if someone comes to help you out sometimes you still have to do everything you used to plus what he did in addition to the added caregiving on top of it all. A young mom hearing my plight said that it must be like having a newborn. I said somewhat but there is no joy or hope for the future. And people come to celebrate a birth. They recoil in fear when they hear our loved ones time is limited, as if PSP is contagious. Like divorce with a death sentence. I am younger than my husband and used to be so energetic-as he was. But PSP has taken it's toll. I look in the mirror and I do not even recognize myself anymore either. I am trying to be positive for him but sometimes I cannot even look him in the eyes. I am afraid he will he will see my depleted spirit and all of my fears. G, your doctor sounds amazing! I cannot even get his on the phone. She has written him off completely. I saw this his last visit. Even if there is nothing more to be done she should realize how hard this is to go on.
I am sorry. Not very cheerful or helpful. Just felt I understand what you are going through and had to say something.
Take care and find a way to get some ZZZZZZ's and do something for yourself!
JGC, Its so hard to deal with and I feel so sorry for him. But occasionally he is there and swears he can do everything he used to do, not I so miss him. Actually his Dtr does call me back when I think he might need a change of meds, so I am lucky with that. Will be increasing it tomorrow. He is forgetting more and more which drives me crazy.
Hi Audrey, M never had problem with meds until 2 yr ago, heart pills and nursing training, then she began to forget or skip doses. After one short holiday when she forgot to bring meds and ended up having angina attack, she told me to take responsibility for her prescriptions and ensuring she took the pills. Caused a few problems at first (double dosing) but now I have full control, also helps having PEG.
My problem is remembering to get the prescription repeat requests in, in time as GP takes 3 days to check and raise the scripts, I know I can hand the repeat to the pharmacy but tried once and ended up with double amount of pills arriving.
I know it is another chore but it might be time to take over his meds, to ensure he takes them as I think part of PSP is loss of short term repeat memory.
Tim, He has no clue of what meds he takes. He has to take his heart meds morning and night along with the sinemet. I fill his pill cases but he manages to take the wrong case at the wrong time unless I am standing right next to him. Then there is the sinemet during the day every 3 hours. I feel punchy, when I am filling his cases, sometimes wondering, oh nuts did did I do that right. Since he is on warfarin as well, that changes every week or every 2 weeks. I am the only person who knows what he takes.
Hi Tim, Have already taken over his meds. He hasn't a clue of what he takes or when. The when is the bigger prob since I have an alarm set on my phone and he has to take 1 pill every 3 hours. If I am trying to take a short nap it always wakes me up and if he is another room I yell take your pill which are on his walker just for the day. I don't trust him to take them himself anymore since I found all 3 of them still there when I went to fill it for the next day. I have to be right next to him to make sure that they are really being taken. Think that drives me crazy more than anything. Try to have an extra bottle of everything so I don't run into the problem of running out. Although the VA is pretty good on sending them quickly if I tell them the truth, I didn't count what was left correctly. Beginning to think I am loosing my mind besides being completely exhausted.
Audrey Do not worry about a missed pill unless a very specific med the body will carry on as though it has had it. Do not double up the next dose as it is not required. Also the rigid schedule is flexible plus or minus an hour does not matter, that is heresy to my son but the thing that he says is do not stress as you twist the PSP knife in the carers heart, do the meds when you can and remember.
I do not know how to help you with ensuring D actually takes his pills the pouch sounds a great idea but it may be time for you to think about giving his pills directly I know it a further step away from independence but PSP does this.
I have an amazing pill dispenser/alarm box called Med-e-lert which I bought very inexpensively on Amazon years ago. You can fill it and set the alarm for up to 4 times per day. It's very loud and the alarm doesn't stop until you flip it over to dump out the pills. All my dad's caregivers love it. Right now my dad is taking meds 4 times per day so I can fill it with about a week's worth of pills. The instructions for setting the clock and the alarms are not too difficult to figure out. The current price on Amazon is around $79 US. I highly recommend it!
Hi Audrey, like all the others, S use to take all his pills on time, then we had to have an alarm going off, to remind him. That stopped working, so I had to step in. Now I have to crush his pills and shovel them down his throat. Do I forget? Of course I do, the alarm goes off, wakes me if I have dozed off. What do I do? Turn it off and far to many times, forget all about his pills. Use to beat myself up, but now have come to the conclusion, as nothing seems to make a difference, it doesn't matter, missing a few. In fact I have made a conscious decision to cut down on loads of them. Got them down to half what he was taking, I will eventually get rid of all! It's not as if, any are making him better, so what's the point!!!
My advise? For your own stressed out sake, you will have to personally give him the pills and watch him take them. I know, get another task taken over, but it will reduce the stress level! Second, stop worrying about the odd forgetful moment. Unless there are some pills for another condition, that's needs a regular time for taking these pills, DONT WORRY, there is nothing give for PSP, that is critical. Not that I have heard, even Sinemet, I know has to be taken at a certain time, but even in the most receptive person to this drug, can cope with the odd miss. Third, set up your phone, iPad or computer for an alarm call, that should give you a fighting chance of giving D his pills 75% of the time! if you drop below that! hey ho!!!!
Heady, Iphone set with alarm but he doesn't hear it so I might doze and yell please take your med. Its the times in the morning and at night that worry me the most since that's when he has to take his heart and pressure meds as well as the sinemet. Since I have to take mine as well I just make sure that we take them together. And one of our dogs as well I am thinking that the sinemet is not really doing anything or else its the progression. Heck, I am sure the Dtrs don't know either,
Talk to your doctor, see what pills you can get rid of. S & I got into a pickle, because S was taking so many pills, some had to be an hour before food, some with, the rest after!!! Now I have lumped them all together, he takes a load with Breakfast and a second lot before dinner! I know some may not be working to the best of their ability, but as I said before, nothing is helping or curing, so it's just to keep everyone happy and to feel me feel as if I am doing something! The sooner we get rid of the lot, the better, but the doctor's not happy, because of the stroke risk, but I never been happy, with him taking Warfarin anyway. Not a good mix with PSP!!!
S has the same. When first diagnosed, doctor gave him Aspirin, laughing saying most go straight onto Warfarin, six months later he had a stroke. The doctors in charge then, demanded to know why S wasn't on Warfarin!!! So I never trusted doctors since! If they still don't know about strokes and what causes them, what chance has S got now!!!!
I don't trust most Dtrs except for his cardio who is always on top of everything. We will see what happens with the neuro, she seems to be on the right track but who knows. Only time will tell.
You are his greatest advocate....you are the one who knows what works...we can't rely on what they think they know to find out too late oh I"Iguess it didn't work".....and like everyone here is saying don't worry if you miss one. and too if it is for PSP and on such a highly scheduled interval....see what happens without it....
I'm not a dr just wish there were some who knew more than we kids here on the block!
I love your Post Heady. Really , why are we giving our mates drugs that don't seem to be doing any good anyway. I give B Ambien and Tamsalousin at night for sleep and easy urination. It doesn't have really anything to do with fixing PSP, just reducing some of it's *&^%#@ side effects. And even then, He has to take another otc sleeping aide and he has to stand longer than usual to pee.....so they certainly aren't miracle drugs. so there! There's no levodopa, no anything that will fix my Birkee (my pet name for B) maybe i would do cbd if we could get it. At this juncture I 'd do straight up fat one if it were legal....You know it wasn't just the coffee that was awesome!!!
I give it to B as of about 2 months ago when he thought it ok to take more than needed. I started having to hide them. Now that he knows what I give him, works....he does not seem so apt to take more.
It may be time to give him the drugs....I take mine when I give him his so it's a team thing I guess....he doesn't feel too alone.
AVB
Losing wt is ok when you need to and if you are getting the right nutrients. (and rest)
this does not sound like your case. Go to your dr and ask them about it. He may want YOU to take ensure or something..... Stay strong chick!
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