Drugs/Side Effects/Lack of Sleep and CHC

[Robbo1]

Because of hallucinations, we changed from Atropine drops to Hyoscin patches, then lived in a nightmare for 48 hours. B. was acting as if he had a UTI, trying to get out of bed , constantly babbling and tossing and turning. I had four hours sleep the first night and one hour and twenty minutes the second. After two days, I took off the patch and rang the doctor . I said that I had done this for many years and couldn't go on any more.By this time, B was in a coma like state, hanging down the side of the wheelchair . At lunchtime, the doctor came, checked his vital signs, and tried to check his chest, but he was unresponsive. I knew that his temp. was ok as I had checked it earlier. B. cannot remember the doc coming at all. He woke up and drank some lemonade from a young nurse who was wearing false eyelashes, and recovered after that. (!!!) She had come with the Active response Team. After checking him over, they said that someone would come to assist him to eat. ( He has lost such a lot of weight, and I spend a lot of time encouraging him to eat) . I also got cover from 10 pm 'til 7am.so that I could go upstairs and sleep. Bliss! This lasted for three days.

I didn't realise how tired I was. Until I wasn't , if you see what I mean.

Next week, we have a meeting for CHC so I've been beavering away at that.

As to B.., if he starts acting up again, I'll just get out the false eyelashes....

[easterncedar]

Oh, my! How terrifying! We just started hyoscyamine tablets under his tongue yesterday, as the atropine that has worked so well for a year suddenly ceased to help, and he's been choking on horrible gluey ropes of mucus he can't clear. The tablets may be helping, but it's all gotten difficult. He can't swallow meds, and he's supposed to be on antibiotics for a UTI. Food gets stuck at the back of his throat. He chews the tablets which burn his mouth, we think he's swallowed and minutes later the remnants slide out. We tried everything to get the pills in him. It all went south so fast. So there we are, the nurse, the aide and I, standing around him yesterday, poking him and fussing, failing to get the medicine in, while he sat and endured, and I asked him, only half joking, if he was ready for me to put the pillow over his face, and he said no no no! quite loud and clear, and we all laughed, but I was rather relieved!

Liquid meds are on order. The hyoscyamine did not make him drowsy as promised, although no reaction like you witnessed.

I know what you mean about sleep.

Hang in there. Love, ec

[Marie_14 in reply to easterncedar]

EC you are right to get liquid meds. However you can get a pill crusher which helps with tablets. I hope they get the meds soon as they will be better.

Your husband sounds so like Garry was. His saliva was all stringy too and that causes extra problems as he couldn't cough to get rid of it. I didn't even realise he could choke on his own saliva until I read it!

Take care EC and look after yourself too.

Marie x

[abirke in reply to Marie_14]

The suction machine was the only way we could help B with his very thisck mucus!

[Robbo1 in reply to easterncedar]

Thanks, EC. B. has decided to have a PEG and it will probably be done late June, so maybe medication can be given in this way then. X

[Suebatt in reply to Robbo1]

Hi robbo1

My partner ended up having peg fitted two months ago,which his feed and medication all goes through there. He still has trouble with his Slava but he has regular mouth washes and they are going to get something for home to help him get it up . Sorry I don't know the name of it .

Hope things go ok for you

Sue x

[Robbo1 in reply to Suebatt]

Hi Sue. I heard today that B. Is having his PEG fitted next Monday. X

[Suebatt in reply to Robbo1]

Hi robbo1

That's good news for you not having to wait . It has helped archie so much . There's no more chocking and everything goes through it

Sue x

[Robbo1 in reply to Suebatt]

Thank you Sue, that is reassuring. X

[abirke in reply to Robbo1]

Why are they waiting til June for his PEG?

[Robbo1 in reply to abirke]

I really don't know. They must have a waiting list and we asked them to avoid four days at the beginning of June. We are having a CHC Assessment here today . So you can imagine my feelings! X

[abirke in reply to Robbo1]

Hope all went well with CHC assessment

[Robbo1 in reply to abirke]

Thank you, abirke. I'm not sure if it went well, but the lady said that B had some health issues (some!)

We got to know about the PEG just after the meeting, but I have asked our neurology support worker to pass the news on. Hope things are ok for you at the moment. X

[Bargiepat in reply to easterncedar]

Hi Easterncedar,

Your comment above includes this........"if he was ready for me to put the pillow over his face,"

Hopefully this is a coded message you guys have for when he has had enough ?

Have you talked of this anywhere on here because I would like to read other peoples thoughts on the subject because I am a great advocate of euthanasia.

Please excuse me for asking this if it is something that needs to remain private.

Best wishes,

Patrick.

[easterncedar in reply to Bargiepat]

Oh no, Pat, nothing private. The pillow over the face reference is common currency over here - not over there? It was meant for him to take lightly; we have never suggested that he might want to opt for euthanasia, although one day, when he was feeling very low, he did, in a sincere expression of misery, say something like - "Just do me in." I was not supposed to actually do it, but I was to understand at that moment that he was very unhappy.

His brother, who died from brain cancer two years ago, had decided he would go the suicide route after a minor bout of (successfully treated) bladder cancer years before and had tormented his wife for years with talk of his plans. It seemed over-the-top, self-dramatizing, but that was like him. After his terminal diagnosis, he was quite happy when euthanasia became legal in Quebec and he had a doctor who was willing to help. When it came down to it, though, he let nature take its course, and he never asked for his end to be hastened, despite the pain and humiliations he underwent. Still, I know he was glad to have the escape option; it comforted him to know he COULD go at any time.

I'm in favor of euthanasia, too. I generally include in my long-term plans a walk into the Maine woods in January with a bottle of Jameson's.

That's just me; it would be unlike my guy to opt out, except perhaps by refusing food and medicine. He is stubborn and likes life, and has kids he doesn't want to abandon. And right now PSP seems to keep him very much in the present, so his unhappy times don't seem to accumulate in his mind. Still, I was happy to hear him affirm that he isn't ready to go - and I will have that moment to refer to when others suggest that I could do less to keep him going than I am.

It isn't legal here to help, although I can see, have seen, that many doctors aren't against easing discomfort in such a way that it could effectively put someone to sleep for good. At some point, I'm pretty sure, they will offer to increase his medications to that end.

Anyway, I have a friend, long-divorced, who said in the hearing of her gentle, shy, wispy daughter: "Who's going to take care of me when I get old?" only to hear the sweet girl say "Don't worry, Mom; I know where you keep the pillows."

You have to laugh, right? On we go.

Love and Peace, Ec

[Bargiepat in reply to easterncedar]

Thank you Ec for that reply...... and the wonderful quote from your friend.

I am still smiling as I type this.

Patrick.

[Cuttercat in reply to easterncedar]

Thanks for the update. I'm in the same spot with the choking. We are only on baby food now.

Cuttercat

[Robbo1 in reply to Cuttercat]

Hello Cuttercat. It is so hard isn't it when your loved one struggles to eat?

My husband isn't a big man and was very slim when young. But to see him loosing weight so rapidly is heartbreaking. I don't think he would like or accept baby food. He dislikes anything creamy , even soup. Maybe the peg will make a difference, although he has had cellulitis twice in the past, so we are worried about infection. Big hug. Rx

[Cuttercat in reply to Robbo1]

Soup is even hard for him now. Liquids of any form.

[Marie_14]

That must have been so scary for you? One of the many things nobody tells you is how people become immune to medications. My husband was on Hypocine but had no bad reactions. Until the day before he died when it totally failed!

He was in hospital and they had never seen anyone with PSP/MSA so had no idea what to do! They were not allowed to give him Atrophine but I had the name of another drug to use in my diary, and after consulting the Hospice they were told to give him that! I will try to find the name of it for you. All I can remember is it begins with D!! Anyway he was on that for the next 12 hours and then he slipped away. It is still very raw as this was in February.

I really feel for you. I know how bad it is without sleep too. Glad you have managed to get some help to be able to sleep.

Hugs to you!

Marie x

[Robbo1]

Thank you Marie, it is so good of you to support us when you have gone through so much. I think of you and others often and wonder if I will be able to be as considerate and strong as you who have experienced what we are going through are , being there for us. X

[Marie_14 in reply to Robbo1]

I wish I could shame people into doing something about all of this! Sadly in a world where money matters more than humanity that's not possible it seems? So I do my bit to help others going through what we did, as do so many other people on this site. We have to help each other or we are all lost?

You know the drug that began with D? It actually begins with G!! It is Glycopyrronium. Write it into your diary as it might be handy one day? They had to use that as a last ditch treatment so might not use it at present? There again they might use it and see how he gets on with it?

You might have to use a suction machine to clear the build up of saliva as someone else suggested. G had it used on him in hospital. I suspect he might still be alive if the Care Home had used one and ensured he wasn't lying down when he was asleep! I might drive myself mad wondering what happened before they called for an Ambulance that morning? Nobody has told me! I am almost afraid to ask.

You know despite the PEG it is still possible to choke on saliva. In the end that's how G died. It was my worst nightmare come true. The only thing is I got the doctor to give him that drug and he didn't wake up again afterwards. He just died. I am heartbroken but that's life and there is nothing any of us can do apart from supporting each other?

Good luck to you and hope things are not too bad tonight. Hugs and love to you.

Marie x

[cabbagecottage in reply to Marie_14]

Dues the pump help clear the throat. I hope so

[Marie_14 in reply to cabbagecottage]

Cabbage cottage we were never given one to use at home probably because G wasn't that bad with choking until he had pneumonia. Then he did start to cough a lot with a lot of stringy mucus. He was put on Hypocine patches which worked for him. He didn't appear to have a bad reaction to them until the day before he died. Then they just totally failed.

They used the suction machine but it only made him comfortable for about 30 mins. The nurse he had that day was in the wrong profession I think! I don't think she was using the machine correctly as he had had it once before and it was not used the same way.

A young doctor came and she was amazed that Hyopicine was failing! She had never seen it not work she said. I gave her the name of the drug I had in my diary but she said she would ring the Hospice. They told her to give him the drug I mentioned.

It worked and he just went asleep. He died the following morning.

Be strong! None of this is easy and we are all plunged into this strange world trying to do our best?

From what I can see most people really are different with the progression of this condition and in the way they leave us. I didn't believe that until I came onto this site! Now I do.

Hugs to you, and don't forget to ask questions as there are lots of people who will suggest things which may or may not help. It's all a bit trial and error but worth knowing things if you come unstuck.

Marie x

[Robbo1 in reply to Marie_14]

Thank you so much, Marie. I have noted the drug.

I did mention a suction pump to the Parkinson's Nurse some time ago, but she said she had never heard of it.

What a terrible time you have had. I pray that B will just slip away, but at the same time, I never want it to happen.

Thank you for the hug. I need it. I had a "funny turn" when driving B to the hospice today.I felt it coming on and parked up. It left me upset because it had worried B and also made me worry that I may have to stop driving. However, when I got back into the car later, I realised that despite the temperature being 23 outside, I had got the heating on full and had been wearing a fleece and a padded coat !!

Sending you a big hug too. Rx

[Marie_14 in reply to Robbo1]

Oh dear! Glad it was probably the heating and the warm clothes. Maybe you should go to the doctor to check though? It would be awful if something happened to you.

By the way if the worse came to the worse B can go to the Hospice in an Ambulance same with hospital appointments. That's how Garry got there as I don't drive. You tell the Hospice you need an Ambulance and they will book it for him.

So glad I sent that hug! Take care of yourself. You are so important to B and to us too.

Lots of love and another BIG hug!

Marie x

[Robbo1 in reply to Marie_14]

Thanks Marie. I have had various tests and the conclusion is that I have, " Reflex Syncope" , which means that my blood pressure suddenly plummets. As long as it doesn't happen when sitting or lying down, I can still drive. When it happened, I was sitting, that is why I was so worried. The episode was unlike the others, so I I am hopeful that it was due to the heat.

I only drive short journeys now, which means that we don't go and visit my 95 year old mother as we used to, so that's a worry too. She has good neighbours and we speak most days. She lives 40 minutes drive away. My daughter's husband kindly picks her up and takes her home when they come up from the south.

So oo many things to think about! X

[abirke]

Good luck friend surely with the doctor as a witness to your husbands condition, CHC will be pretty easily convinced of your needs.

[Robbo1 in reply to abirke]

Thank you, abirke, I certainly hope so! X

[richmond1]

Hi mum had same reaction to hyoscine patch, they even cut it in half and she was still the same. She now has a liquid called glcopyrolate which dried up her saliva with no hallucinations xx

[cabbagecottage in reply to richmond1]

Didn't work for us

[Robbo1 in reply to richmond1]

Thank you, Richmond. I think I will talk to the doctor about the suggestion that you have made. X

[Amilazy]

Hi Robbo1

Rather than going straight to the doctor first try your local pharmacist explain the condition and how you are trying to control saliva and the bad reactions to atropine and hyoscine, the pharmacist is trained to look for side effects before giving the dose so would have been able to warn against the side effects, luckily ours did and suggested cutting the hyocine patch in half so M's reaction though severe was only for short time yes over night but she recovered in the next morning. The pharmacist may be able to suggest alternatives such as Glycopyrronium and other alternative drugs that do not cross the blood/brain barrier and discuss it with your dr so a prescription can be sorted.

Hope the find something, best wishes for more restful night, Tim

[Marie_14 in reply to Amilazy]

Tim that is sensible!! Good to have you back. It is always the easy things that give the most benefit?

How are you doing? Bet you have been enjoying this sunny weather in your area?

Tomorrow they say it will change though.

Marie x

[Robbo1 in reply to Amilazy]

Thank you Tim. That is useful advice. X

[Marie_14 in reply to Robbo1]

Just realised what you said about the Parkinson's nurse! My experience of the one Garry had was she was worse than useless! Ask at the Hospice what would they advise?

Marie x

[Robbo1 in reply to Marie_14]

Thanks Marie. Where would I be, without the wisdom of the people on this site! X