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PSP Association
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Wish we could get an idea what stage dad is in (and how much longer he has)

I know I'm far from the only one that's frustrated as all get out by this disease, all the changes, and not knowing what's coming next. We know that the disease is progressing, and it seems like it's moving faster, but it's hard to know for sure.

We moved dad into assisted living in a retirement residence (Ontario, Canada) 4 months ago, which has been a learning experience. Mom's said that in some ways it's actually harder having him there than at home because we're always having to go through several layers of bureaucracy or working through other people to get things done. Not to mention that the home he lives in isn't staffed enough, so often there are PSWs from an agency who don't know dad or how to help him, so you can imagine how well that goes at times. The regular staff are great, just to be clear.

Back to the now.

Dad's in bed almost all the time, generally only in his wheelchair for meals. He's having such troubles with his eyes, and despite the drops the doctor prescribed, one eye gets irritated and stays inflamed for weeks. His other eyelid closes involuntarily, but neither seems to close completely some of the time. He's on a mostly puréed diet, but now he either doesn't have the energy or brain-muscle connection to lift the spoon -it's awful to watch. The weight loss has been significant. He also more often kind of checks out - eyes open, looking ahead, but not responding to verbal or physical stimuli. Speech has mostly disappeared.

There are just so many things happening, and we're always trying to figure out ways to get things done. I did just talk with a case coordinator at the LHIN, and she said that she will try to get him some more hours, or work with his hours, so he could get help with feeding at dinners. She also said that we definitely could bring dad home when we know that he's closer to dying, which I think he'd prefer, but how do we know when he's at that stage?

Oh, and has anyone ever used a moist heat eye compress (Bruden or Thermalon are two brands I've seen)? Wondering if that might help his eyes from getting so dry.

Thanks for listening.

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I’ve been using Systane Lubricant Eye Ointment, Overnight Relief, Tube 0.125 oz (3.5 g) at night in Larry’s eyes. That helps a little with the irritation. Down side it makes his vision blurry. Was using hot compresses. That was a wash cloth heated in the microwave for a short time. Had to make sure it wasn’t too hot.

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Thanks, I know the doctor prescribed some eye gel, but I don’t remember which.

Do you dampen the wash cloth much before microwaving?

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I wet the cloth then wring it out. It’s damp but not dripping. It can come out of the microwave too hot. Then I swing it in the air to cool it off some.

What I use on Larry’s eyes isn’t a gel. It is petroleum jelly with some mineral oil in it. Seems people with PSP don’t keep their eyes fully closed when sleeping which allows the cornea to dry out causing the irritation and tearing.

I was told to use an eye gel on one of my eyes that gives me problems drying out. Told the ophthalmologist I was using the petroleum based eye ointment and he said that wasn’t right for me. The gel was what I should use. Larry the petroleum based ointment which leave a film on the eye to protect it.

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that's good to know, I'll look for it when I'm next in pharmacy.

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Liz, check out The 4 Stages of PSP on The Brain Support Network website. Also look for Gone from My Sight: The Dying Experience video & script by hospice nurse Barbara Karnes also on Brain Support Network. There is a string in our historic posts here titled; Can anybody tell me when you no the end is near by 82wendy. See goldcap's response.

I read all that, thought hubby was maybe 60% of the way into the disease, then he collapsed and died without warning this July.

You really never know...😏

Xxx

Anne G.

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I found the Barbara Karnes video most helpful, too. However, I seem to remember the process she describes being of a far longer duration than I experienced with my husband.

It will not have prepared you for your experience, I think Anne!

However, knowing there is a process helped me, and that other nursing staff know how to recognise it. I had no doubt in my mind once my love reached a certain point and the Barnes video helped there.

HUGS!

Jen XXX

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Thanks. Understanding the process does help.

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For me, I think it was the confirmation that I was on that track that I needed and that my thoughts on what I felt were happening were correct. Before that I was in a whirl of emotion, not knowing how to feel and unable to talk about it.

This site and my friends were (and are still!) a godsend!

Hugs

Jen xxx

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Thanks Anne. You’re quite right that you just never know what will happen. I’ll take a look at that string of posts and the video.

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I don't think you can get anything other then a very very rough timeline on these diseases, there are just too many variables. Everyone progresses at different rates with slightly different symptoms. It's just so hard to say that symptom A will happen for X amount of time then symptom B etc etc. I wish i had better info for you but I don't. If your thinking of taking your father back home use your best gut feeling to decide when.

Ron

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Thanks, I think that’s what we’ll have to do. I just want to make sure it’s in time for him to get some time at home before he reaches the end stage.

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Hi Liz

Welcome :)

I can't add to the other posts they seem spot on.

But I do want to thank you for the idea of moist compresses. That sound so good.

Wishing you all, the best best.

Kevin

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Do you think one of the reasons that he is losing weight, is because he can't feed himself anymore and no one else is? Maybe the people in the retirement residence think that he doesn't want his food, if they are short staffed and no one is sitting with him...

DenB

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It’s hard to know why he’s losing so much weight. It started before he couldn’t feed himself, but recent changes won’t help.

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I just got off the phone with the LHIN coordinator, who said she can't get more hours for dad, but that she'd talked with the director of care at the home. Some suggestion was made about maybe trying different utensils, which really frustrated me, and I had to explain again (politely but bluntly) that those aren't the problem now, it's the disease. Hopefully when the OT gives him an assessment she'll identify things more clearly for the files.

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How frustrating! I know they think they are doing their best for your dad but do they ever read up on these rare diseases?

I do hope the staff can get to know your dad and his needs more clearly.

Thinking of you all

Denise x

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It's hard to blame the LHIN coordinators too much, they're absolutely swamped and trying to do a lot with not enough resources. What irks me is that I thought I was clear that the problem was that dad can't lift his fork or spoon, that he freezes mid-movement, so new utensils are not likely going to help.

Thursday we meet with the OT again, and we also have an appointment with the family doctor at the home, but that's for ensuring all the DNR forms are signed.

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In my experience, the loss of weight starts up to 2 years before it becomes noticed. This happened with my husband. Towards the last 6 months of his life, he was too tired, or the effort was too exhausting, to get something to eat himself. When I realised this, I took over, but he was given choice of what he wanted.

Because he was moving a lot less he was in the pantry less, so snacking little, which also made a difference.

Once in hospital, he again only had what was served, which was more than adequate. He had a big pneumonia attack, think it was viral at first, which took a great deal of his strength.

Once recovered, there were times when he, like your dad, could not bring his spoon to his mouth, or cup to lip, a symptom of Parkinson's, I thought, so accepted it as being another progression. I got him straws to drink and made sure I made him warm tea each time I arrived. This helped keep up fluids. A more liquid diet was also introduced, which consisted of high calorie foods, Fortisip ( which he refused as it tasted horrid!), soup, jelly and ice cream, yoghurt, custard, cream, mashed potatoes, etc. He often ate his pudding first. A nurse occasionally came to feed him and astounded me at how fast she could shovel a plate of food into him! And he did not choke at this point! He refused to let me feed him or help him drink when he 'froze'!

So, Liz, I am thinking that you need to prepare yourself for a gradual decline from here. There may be minor improvements along the way.

If you are able to communicate with him, ask him how he feels, if he is not happy, and if he is not eating on purpose. It may be a decision he is consciously making without being able to let you all know how he feels. He may be unhappy at being away from you all in the home. You talk of bringing him home to die, so maybe this is the time to consider this. I wonder if talking to him about it at this point will clarify for you all what you need to do. Facing up to this point is the hardest thing you may have to do! But it may bring out the best consequences.

However long he has left, I know you will make the right choice, and give him all of your time. It is something we all do, as we have time to pick up our own lives later and in due course, hard though that is!

Big HUGS!

Jen xxx

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Thanks for responding. Dad only started losing weight in the past few months, and he's even having troubles with getting the straw positioned.

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I gave up thinking about stages as everyone is different. I just did everything I could to make whatever time my husband had left as comfortable as possible. I spoon fed him slowly for at least two years and it sounds as if your dad needs help with feeding now. It must be such an effort for him. Can he communicate by squeezing your hand or putting his thumb up or down? He does go in a wheelchair for feeding so does he get taken out in it?, even just outside the door to feel the air on his face. Has he a comfortable recliner he could sit in instead of being in bed. Because of a problem with a hoist delivery, my husband was in bed for 7 weeks and he was very depressed and unresponsive, I thought he was going to die then but as soon as it was delivered and he could get out daily, he bucked up. Although he looks unresponsive, your dad’s brain is probably working overtime as he can hear and understand everything that is going on, unless he has other neurological conditions as well. He will stare or have his eyes closed as he is unable to blink. I used a spray on my husband’s closed eyes. You’ve been told you can bring him home when he is closer to dying. I knew when my husband was closer to dying because he asked to stopped being fed. 3 weeks before he died he and several members of our family were sitting on the sea front looking at the sea and experiencing all the sights, sound, smells etc. His thumb went up when my brother asked him if he was having a good day, an outing he had chosen by putting his thumb up when he was asked if he wanted to go.

We knew when his time to go had come but others don’t. Some leave suddenly without warning, some go when they get pneumonia others recover, others, like my husband make a conscious decision.

It is so hard seeing a loved one deteriorating, knowing what the end will be but I’d try and make what is left of his life as good as it can possibly be.

Thinking of you all.

XxxX

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He can understand a fair bit of what we say and what's going on, but he's having a lot more troubles with complex ideas. He's having increasing troubles lifting one finger for yes, two for no (and the scale of 1-5 for things like pain). By the time he's finished eating he's so tired he wants back in bed, and he will almost never agree to getting out unless it's my brother or his brother suggesting it. One of the PSWs said that one day he absolutely refused to go to dinner, even worked at putting his legs back into bed after she'd swung him around.

Thanks for replying. :)

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I agree, I don't think classifying this disease in stages is that helpful, it is so different for everyone and so changeable from day to day.

Mum has terrible trouble with her eyes, one or other always seems red & uncomfortable (not helped by her using the same tissue to wipe each I'm sure, but I can't get that message through even putting a tissue in each hand, one tissue still does both eyes!). We have found warm flannels, followed by gentle massage with a cotton bud & then wiping with a cotton wool pad dipped in cold boiled water (you can also buy special wipes & solutions Blephasol is the brand name in UK) have helped, in addition to eye drops & ointments. This link maybe helpful nhs.uk/conditions/blepharit...

Good luck

Alison

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The link has great advice, thanks so much for sharing!

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A lot if them symptoms are exactly like my husband, he tried the heat thing on his eyes also hi lo drops, nothing seems to do any good, but sometimes he bounces back for awhile, but it doesn't last too long. He has had lots if falls in the past, but stopped for quite a bit, but now starting to falls again, but that's because he gets up unannounced. So just a lot if symptoms disappear for awhile and then come back.

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Dad's having fewer falls, but it's hard to know if it's because his bed lowers nearly to the floor, or because he just doesn't try anymore.

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The stats indicate that the expected time you have is about 6 years from initial diagnosis but there is an extremely large variance

in my case , for example, i sensed something was wrong in 2014

eventually went to my GP an diagnosed by consultant as having Parkinsons in 2015 then rediagnosed with PSP towards end of 2017

my expected time left is thus about 3 years based on initial diagnosis in 2015

i am fighting it every step of the way through art, mathematics and exercise which might extend the time left to about 5 years--i do not intend to just 'walk into that good night'

not sure if that helps or not--its how i feel about it

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The first year after diagnosis he was still trying to keep up with some of his usual activities, or replacement activities we brought him to, but he can no longer do them. Poor guy, he's just too exhausted to do much of anything. I am planning to get him out of the home to see his geriatrician - he really likes her, and we can also get a Tim's Ice Capp,

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Dear all, I don't Know where I am standing in the stats, but I was originally diagosed with parkinson’s In February 2011,and about 2 years later with psp. So in that case, I seem to be outliving the stats, but then you never know what will happen, I might have a very nasty fall oneofthesedaysand hurt my head in a desperate manner and never live to tell the tale....

So I don’t think of all the possible stages I might get into, I think so far I have been « lucky »: if you could call it that way.

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I would just like to echo the comments above saying that you never know.My husband went through a fast decline for his last 6 weeks but he was getting physical therapy and could still walk with a walker.Then he suddenly died. It has been said many times but my best advice is to take one day at a time. Blessings to you and your family!

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Thanks for replying. In some ways we would prefer the quick, sudden death than this lingering, even though it would be a shock.

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Hi Liz!

I am sorry that PSP has entered into the life of your family.

Here are some notes about our experience in the care of a patient's PSP eyes:

Dry eyes is a classic problem: drops of artificial tears to the eyes or physiological serum upon request (more often as the disease progresses). If you have problems applying the drops "Optrex spray" is an alternative. Also warm moist compresses help. To clean the eyes, wash your hands beforehand and always use a gauze sterilized by each eye, moistened in physiological serum.

It can be an allergy. Consulting an ophthalmologist who has experience in PSP is recommended.

Taking into account that each patient of PSP has a particular development ... By private internal mail I will send you a compilation of symptoms that PSP is presenting throughout its evolution and that I have been obtaining in this chat.

I hope you find it useful.

Hugs.

Luis

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Thanks, much appreciated!

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Hi Liz just reading your post you father sounds like what is going on with my brother, my brother is home tho, we have been hand feeding him as he can’t do it himself, getting very hard to even get him into his wheel chair, his eyes get very red and irritated to we put refresh drops to keep them moist as they don’t blink has lost a lot of weight also, and zones out no verbal or physical either, never heard much with moist heat pads, does your father sleep a lot my brother sleeps 18 out of 24 hours now, they usually don’t stage PSP, but diffently severe really has gone down hill the last couple months, this PSP is hell. Take care. Nettie

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It's funny how it's a bit of a relief to know that dad's not alone with all these symptoms. We're not sure how much he sleeps during the day, or if he's zoned out. The visiting palliative nurse's notes have said that she's witnessed a lot of points when he is asleep where he's not breathing for long periods between breaths, but without the gasp you might expect. I've witnessed some of that when he's awake but kind of zoned.

Thanks Nettie.

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I think once the weight loss is significant it is time to bring him home. We waited too long and regret it so much. Your dad will eat less and less and get weaker and weaker. I send you all my love and sympathy X

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Thanks, that's good advice. I'll have to start working on things.

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Lookkng at DoreenC's note and reading about the palliative nurse's comment to you, Liz, I guess you may not have too long.

Get him home for a visit, or a day or 2 if possible, as soon as can be arranged!

When my love was transferred from hospital to the rest home, he was not allowed to travel except in an ambulance.

Because he has little strength , it may be difficult to use a car. Make sure you cover all the necessary before you tell him, in case of disappointment!

I bet he would be delighted and may not want to return home.

I regret now i did id not try and get my love home again as I had no (time to get) facilities organised. He had left home barely ambulatory and in 3 months was unable to stand and spent most of his time in bed or asleep in a chair.

Don't spend time looking at PSP symptoms, look at how you dad is in himself! And note the palliative nurse's comment!

Hope you can get him home soon!

It is such a traumatic time I know!!

Take care.

Big Hugs

Jen xxx

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We don't have the ability to bring him home for visits, and we haven't since moving him to the residence. We can't get him in and out of a car now - when he has to go somewhere we take him in a wheelchair accessible taxi. When/if we do bring him home, it certainly will be a bit of a coordination nightmare, but that's something to think about now and plan out.

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Pleased you have the wheelchair taxi option.

My husband wanted to go home too but we did not have time to implement.

Hugs

Jen xxx

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That’s a shame that you didn’t have the time to get him home. I hope we will; my brother and I talked about it and we’re both on board if it’s possible.

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It is an immense effort but don't think you will regret it! You will have done your utmost to give him his wish. The memories will remain afterwards and hopefully give you peace of mind!

Hugs

Jen xxx

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I too feel that as his weight loss and feeding become significant issues would be the time to get him back home if possible, as long as you have everything in place that you will need. There is something very special about being with your loved one as life wanes and death is imminent, it can almost be called a privilege to help them through their final days knowing they are with the people that really love and care about them. I lost my husband in May so those feelings are still very close to me and I know I gain comfort knowing, that in his death he was surrounded by his close family as he took his final breaths, the love in the room was palpable.

I realise that we were lucky that it was obvious that Ben was in his final days and were able to contact family to enable them to be with him. It's worth the effort if it's at all possible.

Love Kate xx

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the large variance means it is possible to live significantly longer -27 years is noted in the literature

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