I keep on forgetting to give D his meds on time. I am so petrified I am loosing it. His face looks worse today. The bruise below his eye is getting worse. It is more swollen than when it happened yesterday. I am so scared. Have to stay up until 12:00 and all I want to do is go to sleep.
WHY: I keep on forgetting to give D his meds... - PSP Association
WHY
Written by
Auddonz
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Why do you have to stay up til 12? And have you been icing eye. Remember if he has been lying down, his face will swell a bit. However If there is a wound and it is hot or has a reddness to it...you know like its infected, then maybe dr time.
Don't they have pill boxes that beep when its time to take the drug? If not, Maybe you should invent it! I hope you get some sleep
AVB
Have to give him his meds at 4:00 intervals and I forgot to give it to him. I didn't think icing it today would do any good. Not scratched or anything just red and swollen. My hands are so cold that if I touched it I wouldn't be able to tell if it is hot. Actually I have the time set on my iphone but if I am in another room I don't hear it. Also since the Dtr added another pill, I give it to him earlier than 4 hours otherwise I would be up until 12:00 or 1:00 every night. Yes they do have pill boxes with alarms but one has to go out and find one.
Yes Bruce on a new sleeping pill. I usually gave his old ones at 40 minutes til bed. Now he gets zombied out a little quicker but certainly more ZOMBIED....I am giving him new pill in bed....Thsi has its own complications....we'll get it. Good luck to you/us
AVB
He just takes a valium with his blood pressure and heart meds, which I also gave him later than usual tonght. He falls right to sleep. With the addition of another sinemet, it screwed everything up time wise. Then one of our dogs has seizures and he has to get his meds every 12 hours. I hope I remembered to take mine I was so upset. Need my sanity back, really badly.
I put the cooker timer on as well as my phone alarm if C is on timed meds. Fortunately now, the few meds he has are taken after breakfast. Poor D. He sounds in a right state. Hopefully he will look better soon and there won't be any complications. Take a nap during the day if you can.
Your sanity has probably gone where mine has gone. I expect it will come back one day.......when we are not so tired and stressed.
X
oh Sanity Sanity wherefore art thou Sanity.
Hi cold pack (bag frozen veg from freezer) will still be useful to reduce swelling even if over a day old - especially if still red.
Know what you mean about sleep, I know it was my fault but watched a good film on TV got hooked so bed late at 1130. M woke at 1:30 and would not settle continuous wailing and thrashing about until 7. Then carers arrived at 8, I am shattered head pounding, running a temp and v tired. M now dressed showered and fed and asleep in her chair. I know if I stop I will sleep as well and that means M having accident.
Oh well I had better stop moaning as you all have it as well and probably worse than me. Best wishes hope you have quiet day and comfortable night. Tim
Forgot about talking about care home, I have started taking M to local nursing homes to have a look and check atmosphere and what they do with their clients during the day disgusted that many still put clients in horseshoe of chairs and leave them unstimulated. Only found a couple that seemed to meet M's needs and my concerns on staffing. M does not talk but let's me know she wants to stay with me at home but this is probably not going to work in the long term, short term if last night repeated. My thought if you can take D to a home a week so he can see and possibly get the idea that it is his decision. The drawback is it may make him dig in more. M and I started the slow process a year ago after her bad fall while she could still talk. We both now know what homes we do not want and the 2 which we may use.
Good luck and hope D settles. Tim
wait what , M went and stayed at the homes for a week? How many homes did yall visit? what are some of your criteria that they had to meet? Did you have to pay or was this "on the house". Oh and are nursing homes paid by you of the gov''t?
sorry so many questions
AVB
We live in an area where there a lot of care homes full of elderly who come to the area for the flat coastal position and clean air. So we visited about 20 homes all supposedly nurse covered but only 2 met our requirements a specialist neurological nursing homes mainly brain trauma recovery but about 30% neurological long term conditions the other was the hospice. All had no more than 25 clients and at least 5 staff on over night with at least 2 nurses. That they had ensuite rooms with outside views coastal or mountains, not as was case in a few either no windows or views over courtyards. Had day activities which could be tailored to M's needs. Hoists to get M up and into bed. Also chairs so she was not left in bed all day. Most of all no old age musty smell (sorry do not how to put tactfully) when you entered home, amazing how some new homes had it and some older ones didn't. We both developed a fixed smile and did not react when walking/pushchair round. We would discuss outside and usually agreed yes or no. Important that M liked the people and home.
Hope this is a help.Tim
Sorry did not answer you main question, we contributed to the private home, but the hospice is free but expect a donation, as they get funding from NHS. I ask for if possible one sitter most time as M's choking is now getting serious, I have to pay for this as an extra for daytime but at night both homes have sound monitors for each room. Yes had 2 lots of week stays at neuro nursing home 4 days too short in May and 10 days too long in July. Booked a week in Nov at hospice hopefully can survive the broken nights till then. I think 7 days will be about right for M both homes suggested I visit for a couple of times at beginning of stay and then towards end - so M can adjust to home but also so I can do something "singing in Madrid" or walking up Snowdon besides catching up with sleep.
Best wishes Tim
Ok I just read this. Are they like hospitals or more of a home like atmosphere where patients have apartments....never mind I think we both understand.....TY for the answer though!
Hey Did you ever send a sample of your singing from the last time you went to Spain? I'm old and confused...I forget easily, I think maybe I remember too much ....I don't know h whatever hahah
Well anyway it sounds like you are doing a good job planning for the future. Good for you and M.
AVB
Oh so you just took a tour . M did not stay there....sounds like you figured out what place was like by end of tour! I had a student who's mom worked as an overnight aide in a nursing home. He would come to school in horrible condition....because he had to spend the night at the old folks home.......He said the old people crying out all night kept him awake.....So what could I do, Bruce and I let him stay in one of my kids old bedrooms. She finally got schedule changed... but yah, the homes are not homes and that's a very important decision.....I am not even thinking of that for B...mostly a denial thing, "He won't need that"
There are a few nursing campuses who say they try to keep the patient as independent as possible....and the more you want to spend, the more you can get an independent living home on campus where one has immediate access to needs like meals and medical....But only when you need them.....It's a pretty penny though....
Good luck I hope you won't need this for a long time
AVB
Yes we would just turn up and ask to be shown round, good way of seeing what staff are like and conditions. I agree not "homes" more like 2 star residential hotels well most were though they probably thought they were 5 star. I know it was when M was mobile and still able to talk a little would be no use now to do the search. If you think you may need a time out place start search before you really need it. We almost left the search too late. Do not want to put M in any place in an emergency if I have an accident or am hospitalised. Old Scout motto "be prepared". Sorry about sermonising good luck Tim
I'm used to sermons! hahah
yes though, you are right. My kids have talked about an independent residential for both B and me. cottage style places. one story, with facilities on premise.I can feel my feet digging in! but I see what good you have done....How did M react to the notion that she may need this type of care...you probably told me but.....
AVB
M knows she is going for short period so is resigned not happy but knows I need the time out. At present no plans for long term stay other than possible final days which are hopefully a long way off. We discussed it a lot, earlier on, M totally against care but was persuaded by her sister who came for a cup of tea in Feb took a look at me ordered me out and an hour later told me M had agreed to look at the homes. I do not know what she said but probably along lines Tim needs time to de-stress or he will crack and you will be forced into a home.
Tim
I'm sorry Tim one small thing we want and it's soggy business the rest of the night. I gave B a Diphenhydramine (Benadryl) along with his increased med, we both slept pretty well last night. Even got up early enough to walk the dog before all other neighbors walk their little yappin darlins'! hahaha
Thanks, I think M will be getting some Lozarapam tonight if she isn't quiet. I am not a pet owner but see a lot of walkers, when young had collies and labradors do not see point in some of the little things size of rabbits. At least gives you an excuse to get out of house in all weathers unlike me who at present is feeling depressed with grey overcast and sitting inside while M feeling cold so not wanting to go outside.
Tim
hi
don't be so hard on yourself, this disease is progressive we can't halt it if meds are a little late generally it's not a massive problem, take care of yourself x
juliex
I often forget B's meds. I don't know if they do any good anyway. He reminds me by tapping or pointing his finger. I also told him the mantra, " tea, tablets" . So whenever we have a cup of tea, he remembers to remind me. We are usually pretty good, but don't get distressed if we miss some. Dont be too hard on yourself, there is enough to do and worry about and if he needs tablets for pain, I am sure he would manage to let you know. Sending hugs. X
Well day has driven out the night. How has D's cheek faired? You think he might need a DR. If he doesn't want to go...don't tell him he's going! I'm not saying lie ...just tell him you have to go...ask a question about your sleep and then let doc look at booboo.....then both of you get looked at......Hey haven't even had my full first cup yet so ...sorry if it sounds sophomoric!
AVB
abirke, he survived the night. Heard him get up a few times for potty and I didn't get into mine until 12:15. He couldn't move well yesterday and he kept on telling me cover my feet. Couldn't get up in time to potty one time and then decided he still had to go. I swear he didn't do anything. Couldn't put his Depends on without help with the extra pad. My back is not good today along with my shoulders and I am so freaken tired. Can't nap since someone is coming to measure for a ramp courtesy of the VA. His eye looks much better, not warm like it was yesterday so I am thinking he is hopefully on the mend. Gotta go and have something to eat myself. Will see you all later. Still haven't read eveyone's comments but am so thankful for them.
Audrey (aka Auddonz)
I use to be neurotic about getting S's medication into him and on time. Now, I have cut out loads, with no affect! All the, give this one an hour before eating, etc., has gone. I crush all his morning pills and give them with his breakfast. Again there has been no affect. Same with his evening pills, lumped them together, instead of one lot at 6, then more again at 7pm! I do use my iPad to remind me of the 7pm ones, but it's easier now, as I just give them while cooking dinner! And the bliss of not having a alarm going off, every couple of hours, has lowered my stress levels dramatically!!! S has shown no affect what so ever to the change! Make me wonder why I am bothering with any of them!
Lots of love
Heady
Heady, Yes I am neurotic about giving D his meds on time and freak when I don't. The morning pills I give him at one time, its the one during the day for the PSP, every 3 1/2 to 4 hours that I screw up on when I am stressed and tired, which is all of the time. Also he gets his heart meds, high blood press meds before the last PSP pill. So that's the story. Today he gave me a hard time because he wants to drive which is a no. He doesn't even know the name of his neuro and was angry that I wouldn't give her name to him. He found a card on the counter which belonged to the last handyman I used and why he thought it was the Dtr, I haven't a clue. He called the poor guy, I was so trying to sleep and kept on asking him if he could drive. The poor guy insisted on talking to me, which I did. He wanted to make sure everything was ok. I of course told him not to worry that D was just a little upset and confused. Drive I really don't think so.
Lots of love back,
Auddonz (aka Audrey)
Oh Audrey, that's awful! Our lives are not a happy ones, are they??????? Being a Carer must be the WORST job ever invented! Now I know why I get so upset, when we are called angels etc., it's the demotion that our status has been given, it's way ABOVE that!!!!
For his pills, can you not set up a regular alarm on your computer, iPad or what you use? Or have several different ones around the house, where you hear then. Might drive you mad having to switch them off, but that has to outweigh the constant worry of getting D's pills into him!
Perhaps you should leave a card around with your doctors name and number, then he will really know what goes on in a PSP home!!!! Oh, to have a professional spend a day with us!!!!
Lots of love
Heady
Heady, No more alarms. I am going to take a nap. Next pill not due until 4:00. Hopefully he won't get into any more trouble today. Good idea about the card though. I am thinking of putting him in rehab for a week if I can without it costing me any $. But I am afraid they won't watch him enough and he will walk out the front door unless they put an alarm on him. He can use his walker. They are not allowed to restrain anyone.
Lots of love back,
Audrey also known as (Auddonz)
Have you thought about reducing intake? Are there any pills that would make you tired or loopy if you took them? sleeping pills and some antidepressants.....
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