She still seems to be eating some even though she cannot hold a fork or spoon and insists on feeding herself with her fingers! Lately experiencing a wet, weezy, cough. She has been confined to a wheel chair for the last 18 months and is almost impossible to transfer at this point. Her left leg, foot and hand/arm is non working at this point. Can anyone relate to this?
I am curious if anyone has experienced sev... - PSP Association
I am curious if anyone has experienced severe sleepiness in the final stages. Lots of confusion too. Non verbal.
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cawbird59
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Hi cawbird59
The wet wheezy cough is often indicative of aspiration, and possible beginnings of aspiration pneumonia. This should be checked out as a priority with medical staff.
Fatigue and excess sleepiness is often seen even midway through the disease progress (often considered due to problems with the chemicals in the brain called neurotransmitters, plus dysfunction of the power producing bodies in the cells called mitochondria, plus an area of the brain is damaged that is responsible for "alertness").
Confusion is typical in PSP/CBD due to frontal cortex lobe damage (that often starts early but progresses quite slowly until the very last stage. Not all sufferers will have severe confusion!). If on medications, one needs to check if confusion is a side effect.
Determination to do certain things (although not always possible or socially acceptable) is all part of the condition for many sufferers. Loss speaking is typical (dysarthria) but sometimes comes and goes depending on surrounding stimulations.
The left sided problems may indicate CBD rather than PSP (but there is often overlap in these diseases, and only a brain autopsy can give a definitive answer).
Loss of walking (typically early in PSP and much later in Parkinson's) happens to most sufferers, as they depend on a wheelchair after about 3-5 years of initial symptoms.
Having said all of the above, I do trust you are coping - it's very hard I know.
Take care!
cawbird59 in reply to
Thank you. She also has been wetting through her Depends and her pants sometimes 4x a day.... it's not for lack of care as she is cared for 5-star! My mother also suffers from congestive heart disease and has Atrial Fib and a valve replacement that was only good for 10 years and is now past due... all of which could be contributing to her wheezing and wet sounding cough and excess fluid. It's just so hard to watch her sit in silence knowing that the visitors are her only bright spot in her day besides the TV and I'm not even sure that she can see it well anymore. There is alot of blinking with difficulty keeping her eyes open. It's all very sad.
cawbird59 in reply to
Thanks for chatting with me about all this....could you explain to me what CBD is?
in reply to cawbird59
Hello again
Just for quickness I'll post a description one can find on the web......
Corticobasal degeneration is a progressive neurological disorder characterized by nerve cell loss and atrophy (shrinkage) of multiple areas of the brain including the cerebral cortex and the basal ganglia. Corticobasal degeneration progresses gradually. Initial symptoms, which typically begin at or around age 60, may first appear on one side of the body (unilateral), but eventually affect both sides as the disease progresses. Symptoms are similar to those found in Parkinson disease, such as poor coordination, akinesia (an absence of movements), rigidity (a resistance to imposed movement), disequilibrium (impaired balance); and limb dystonia (abnormal muscle postures). Other symptoms such as cognitive and visual-spatial impairments, apraxia (loss of the ability to make familiar, purposeful movements), hesitant and halting speech, myoclonus (muscular jerks), and dysphagia (difficulty swallowing) may also occur. An individual with Corticobasal degeneration eventually becomes unable to walk.
(The above is an overview. In rare cases it can start on both sides of the body, and is sometimes is misdiagnosed as PSP. It has roughly the same prognosis as PSP (6-8 years typically), and sufferers pass away usually from aspiration pneumonia or other infection).
Since your mum has other co-morbidities (heart problems etc), it makes her condition much worse.
My wife was diagnosed with breast cancer one month (had r. mastectomy) before being diagnosed with PSP. However, the breast cancer is never thought about now....only the PSP!
On hearing she had PSP, her GP remarked "I hope something else 'gets you' before the PSP!"
Wishing you well, and even with PSP, your mum will still be aware of her surroundings and will still love to have family and friends around even if her vision and voice and movements seem to go.
Take care.
cawbird59 in reply to
Thank you for the description. I do hope that mom's heart related issues are what eventually take her so that she doesn't have to go through the gruesome end stages of this disease. I sit with her and every once and a while she'll look over at me, I am sure that it's very comforting to her.
lbee89 in reply to
What you both say throughout this thread rings very true with my nana. Love and support from our family is so important for her. How can something so horrible take over Someone so special 
Hi Cawbird59
I can relate to all those thing with my husband, especially as Strelley says, the wanting to do things when THEY want to.
Because my husband is able to bear his weight standing up with assistance, we have now got this thing called a standing hoist which is used to transfer him from chair to bed to chair etc. It is a very fancy, a bit like a piece of gym equipment! and takes up a lot of room but it works and takes the strain off me and the carers. The odd thing also is that I think my husband feels like he has some control as he has to "participate" by holding onto the grab bars rather than being manhandled all the time. Before PSP he was always in the gym, perhaps it is bringing back positive memories which must be good.
.
Thank you to Strelley too for his insightful comments.
Dorothy thompson
Hi all.
Our mum been in care home for almost 2 years now. Been non walking for quite a while and now hoisted. We now think she in final stages as now sleeps very much of the day so much so no one can even wake her to feed. ( Been fed for quite a while too , she too used to use her fingers) Hence the big loss of weight, around 2lb a fortnight. Even when she has eyes open she has lost the ability to talk and just stares. She lost her sight in one eye due to glaucoma and has very little in the other. Dad and us visit daily but I don't think she knows we're there most of the time. It's very sad. Just wish someone could say how long she got. Sorry to ramble.
Take care x
in reply to dibber
It's hardest at the end when you are already grieving and having one sided conversations. I found it very difficult to find a way to be cheerful at that time. The condition brings about the shutting down of the mind and body until food is no longer required and swallowing stops.
It is only then that unless they are tube fed that you can finally say that the end is close.I hope you have been able to say what you need to and my heart is with you at this time. Give unconditional love and hugs. Best wishes for a merciful passing xx dianne
JoJo-K in reply to
Hi Dianne,
How are you getting on sweetie?
Jo xxx
in reply to JoJo-K
HI I am fine,thank you for asking. I am still having ups and downs. Was a difficult weekend as youngest daughter got married which was fantastic but mum so wanted to be at her wedding! She was there in other ways but I still found it hard. How are you? xx
cawbird59 in reply to
Thank you for your kind words Diane.
You can't be sure she doesn't know what's going on. My first wife had CJD ( another brain disease). Shortly before she passed on my mom visited her and as leaving said "I love you darling". A tear made its way down my wife's cheek. We had no reaction from her for weeks before that and ASSUMED she didn't know any of what was going on around her. Your Mum is still in there and listening and maybe understanding.
Jimbo
Thank you for your comment. I think she is aware of us at times but mostly in a deep sleep. Visited today but it was extremely difficult to get any words from her. She was awake but just cant seem to respond to any questions or even join in conversation. This has progressed the last few months along with the rapid weight loss makes us think she is going into the last stages. But how long is the last stages?
I know how you must feel I'm sat with Mum feeling guilty I'm on here but Mum is sleeping most of the time she has a chest infection now and we are finding it hard to get her med's into her let alone food or drink she is wheezing and trying to cough but she hasn't got the energy anymore it's awful for her I just wish she could go peacefully without this discomfort thinking of u all xx
Thank you Jan.... I feel the very same way, wishing that mom would just go to sleep and pass peacefully.... it's heartwrenching.
I hate to hear that someone else has psp i know what she is going through. ,i cannot sleep and I am afraid. I have psp also
Jan, as with most touching posts like your I shed a tear or three. Bless you for all you did and are doing for your mom.
Jimbo
OH, YES. My step-dad sleeps most of the time -- except when he's waking up every two hours overnight and doesn't know where he is or who he is with. He has not been able to lift his arms or use his hands for a couple of months now and my Mom and my husband (who is living with them as caregiver during this last phase) feeds my dad. It takes both of them to transfer him from bed to wheelchair to bathroom or to the recliner in the living room where he sleeps all day long.
Daughtermo1 -- I hope you're wrong about when the end is near. Dad still eats good -- although taken to lots of fancies about what is "good" then he nearly eats nothing else until the next "good" kicks in. I have been hoping that the end is very near and that he'll simply forget to take the next breath some time sleeping and it will be over for him. I want that so much more as the alternative seems to be choking or getting pneumonia, both of which would be horrible. He made the decision, no feeding tube, so when he can no longer eat....
CD, let's hope all the suffering PSP patients can pass on in a peaceful way. Bless you!
Jimbo
Dear All,
What a difficult time we are having with these later stages of the disease!
My father is in a home and he too spends a great deal of time sleeping and I would love him to be left in peace to sleep but he is 'woken' every meal time and fed whether he wants food or not. His mouth hangs open most of the time and they just spoon food in and it is a matter of luck whether he will swallow it or not or will it go down is wind pipe. I cannot bear to watch the feeding episodes and have to leave. We have asked that he not be fed unless he is fully awake but they will not comply. They feel really good that they have managed to feed him although it may take them an hour and a half and Dad's head is lolling to one side with exhaustion. Naturally he does not recover by the next feeding time and so he is fed willy nilly with his eyes closed. It drives me insane. I cry every day and every night. I cannot see the end of it and my father suffers with excruciating cramps and upper body(facial and neck) dystonia.which one GP treated with an over dose of baclofen and sent him into a coma like state. It would have been a blessing for Dad had he not recovered, he could not eat or drink for two days, but he is still alive and so we carry on. Last week the carers fed him three whole mashed bananas' in sequence one at a time, ie lunch, supper and then again the next lunch time and so he has had huge diarrhoea bowel movements and ofcourse left sitting in it until the next pad change time.
I cry and they tell me to go see my doctor. I think if I did not cry I should go to see my doctor, I think they all need to go for psychiatric treatment so as to question themselves on their tolerance of suffering and human indignity. What kind of human animal species are we to let someone suffer so much? There is no cure and he has no quality of life, not even that of lying in bed in peace until he dies. Absolutely pointless and selfish. He had a wonderful life but his death is absolutely terrible.
jimandsharynp in reply to
Oh the brutality of PSP! Finding caring people to care for loved ones can be difficult for sure. Let's hope his pain and your anguish end soon. Bless you!
Jimbo
cdhollingsworth in reply to
Oh, Nader, how absolutely awful. Dad's GP (before the hospice doc took over) said -- if he's awake and hungry, feed him; otherwise, let him sleep -- that's what his body needs. Such a wise view. Fortunately the hospice people haven't completely contradicted that and they're only in and out of the house so they don't know. Of course, they wake him for baths and vitals because they have to make their rounds, but otherwise, he can do what his body wants to do.
I'm sure I'd cry too if I saw what you're seeing.
Of course, it's easy, being on the outside looking through your window, but it seems as if that type of "care" needs to be reported as cruel and dangerous. God bless and keep you and yours.
MelvynS in reply to
Your predicament surprised me as most Nursing Homes do not seem to have the staff to devote to feeding a patient when it takes a long time. That was certainly the case where my father resided until he died. What the Nursing Home are doing with your father seems tantamount to force feeding, which as far as I know is unlawful, but also dangerous insofar as his food could so easily go down his windpipe and choke him. I think you should certainly see your GP and take his view on this if he is receptive to your approaches, but I wonder if there is a Hospice in your vicinity whose outpatient team could help (my sister has managed to get her husband onto the books of the local Hospice who have been very helpful and been willing to become involved in his medication etc. even though my brother-in-law also receives Continuing Care from the NHS).
First off. I'm glad to see Strelley back on the forum and sincerely hope that things are going as well as can be knowing the carers life from experience.
Sleeping and continued nodding off is I believe a sure sign of the beginning of the end. And to be honest if someone with PSP has been in a wheelchair for three years then they must be at an advanced stage of this horrendous disease ...as told to me by the Prof Neuro referring to my 73 year old bride.
And yes we know each person is different and some can hang in there for longer,but for certain PSP/CBD are life threatening diseases. Life expectancy is definitely limited.And that's what ,cruelly we must silently hope for.
And for certain one morn you'll wake up, as I did. to find your loved one has thankfully and mercifully slipped away from this planet of infinite suffering .
To-day in France the 1st November is a Public Holiday to remember the departed ,in every cemetery every grave is bedecked with colourful flowers and I've just returned from placing a bouquet on my wife's graveside .
I could almost hear her saying the last words that, with great difficulty ,she wrote for all her many friends.
"For the last billion years planet Earth has been turning with us on it. And I'll probably
be orbiting it many, many times in the hereafter.
Be certain that each time I do I'll be thinking of you, your children and grandchildren
...and I'll send you down a spoon-full of star powder, so that your life will scintillate"
Today I'll just add ..and that goes for everyone who's got PSP/CBD and all their carers, everywhere.
With you all in mind, brian
Footnote: My bride of 54 years had indeed overflown this planet many times...she was the President of a benevolent International Adoption Service for handicapped children. In the course of her tenure, for example, she travelled to India at least 65 times.And personally found families for over 500 orphaned children.Ironically she died of PSP/CBD an "orphan disease".
Thanks for your encouraging post. Jimbo
ULTRAMDERN - WHERE IN FRANCE ARE YOU I AM NEAR LIMOGES
Shasha. I'm in GRIGNAN Drôme about 600 clicks from your porcelain place.I've been living in France for 20 years.My bride diagnosed PSP/CBD two years prior departure,a year ago.
best,brian
ultramodern i am so sorry that you are alone now - 600 k's is a long way away so we will nt be able to meet up but i wish you all the best
I give my wife as many finger foods as possible. I cut them to small bite size because she has a tendency to shove larger pieces in her mouth instead of taking bites. She only walks three steps into or out of toilet and with great assistance. Swallowing is good with not much coughing or choking. We found a straw works best for liquids. Takes 2hour nap in afternoon still sleeps 10 - 12 hours at night. Speech still audible with some repetition required. If I tell her "swallow and say it again" it helps. Hospice brought a Hoyer lift because they are worried about my back giving out. Getting out occasionally, art festival tomorrow ( wheelchair). We are living one day at a time and enjoying whatever we can. Progression of PSP seems very,very slow at this time but we know it won't last forever unless a cure or miracle occurs. Hang in there and go and do while you can. We have concert tickets (3 concerts) and continue to make plans. Why sit and let PSP worries take what is left of life from you both?
Jimbo
There's a company, the Wright Stuff, in the States. Find their Website at wrightstuff.biz/ -- wonderful stuff for helping care for yourself or others. We have purchased weighted silverware that helps those who tremble, and have bought valved straws for Dad -- he can suck up, but it can't go back down into his liquid. Products are a little pricy but well made and very much worth it for the independence and assistance they provide.
I am unsure if my mother in law is in final stages as no doctor will commit.She has been in care home for 12 weeks now.Whist in care she has fractured her pelvis, broken her hip, cut her head open numerous times.She is seeing and hearing things that are not there, she refuses food as she thinks its poisoned even when we try food of her plate we still can not get her to eat.Speech only just audible, unable to walk, continues to put herself on the floor by either sliding of her chair or rolling out of bed.Is loosing weight at about a pound a week and read her district nursing notes that had been left in her room she now has stage 4 kidney failure.However, she rarely sleeps other than 20minutes at a time.Like many of the posts I have read its both upsetting and sometimes frustrating I no its the disease making her this way but I really want to shake her and tell her to keep fighting this disease.Like most comments I want her to have a dignified and peaceful end.Another meeting on Monday with the complex care team they drive me mad, but they are beginning to help now as I managed to get 8hours extra support sitter last time to reduce her injuries and it has helped but it was only for 6 weeks so I will have to start fighting again.
Hi Wendal,
Hearing things and seeing things and becoming dillusional (believing someone is trying to poison you), are behaviors typical of too high a dose of Sinemet. This is what the nurse at the neurology clinic explained to me when I questioned the increase in my husbands meds. Was there a recent increase in you mother-in-laws meds prior to the behavior changes? Or a new med added...Maybe? Whatever the case, I understand your frustration. Good for you fighting for what is right, especially for someone who cannot fight her own battles! Good luck on Monday 
Joan
Alberta, Canada
Dear jimandsharynp and cdhollingsworth,
Thank you for your replies. Just to tell someone about the situation is a comfort. I do sometimes doubt myself as to my judgement as to Dad's needs. I was sure I was not insane to say ' please feed feed Dad only when he wants to be fed'. The problem is that our nursing homes in England are not really providing nursing care. There is a qualified nurse, in our case to cover 32 people and she/he spends her time writing up notes etc or pushing the drugs trolley round and dishing out tablets at the relevant times. It is the carers who are the front line workers and they have not the educational background or the time to actually nurse anyone. They wash,change pads, make beds and feed but can do little else and their pay is so poor. The most frustrating thing I have found is that it is impossible to get a consultant neurologist to make a home visit, and Dad's consultants said they did not see the point of me taking Dad to see them on a trolley and just passed him on for palliative care to people who have never heard of PSP and know nothing about it. Hence all specialist care stopped. I have now changed his GP who has arranged for me to take Dad to a clinic for the elderly, ie geriatric clinic in 2 weeks time and so we will do another trip by ambulance and on a gurney, to what end I do not know.Will there be a neurologist on site or not? Will there be any help for us I do not know? I think my father should be in a hospice but he has been turned down at our local hospice so that is not an option. Meanwhile I go to him every day and try to comfort him. There is nothing else I can do. No point reporting any one it will get me nowhere and may even be to dad's detriment.
I too was glad to see Strelley back! I hope he is feeling a little less 'low' in spirits. I think we all go up and down emotionally on this journey and we just have to try to find some 'light' to carry on as our loved one's need us and of course we cannot trouble our children too much either. I know my children worry about me and I try to protect them too.
Dear Cawbird..you really opened up a pandora's suitcase of with your sleep post....40 friends ,mostly in grief about loved ones mainly in what must be final stages....as Jimbo says so rightly ,tears,suffering and heartwrench.
Both for loved ones but almost even worse for the carers who have to look on while some Mums,and Dads are tortured by force feeding or whatever.
I already found out that these diseases PSP/CBD were inhuman and demeaning to the sanctity of life .
All these posts like Nader's should be" written on the subway walls". As a few posts rightly say
PSP/CBD patients do know what's going on all around them.So don't be fooled!
Whilst my bride was wilting away to almost become a skeleton...she had decided herself to diminish her food intake-- she'd had enough and was asking me to help her leave the planet so stop her mental suffering.
The next bit may shock some of you but I'll make my point anyway.
The day before I'd witnessed something that stuck in my mind.Our neighbour's beloved old companion dog, long in the tooth ,paralysed rear legs, lung tumour problems.,etc,.and wasn't long for this world.
So with difficulty she carried her pal out to the automobile placed her inside and sadly drove off to the vet. And I'm sure without any hesitation either on the neighbour's part nor the vet's ,the old pal was "put to sleep",put out her misery.
And as my wife and I had always managed to share a sense of humour through thick and thin, almost to the end,
I told her about the neighbour's dog. I laughingly added that if she wanted I offered to get her coat and together we'd drive over to see that wonderfully humane vet.
End of Black Humour, but I made my point.
And we think we all live in a humane society ?
With all of you in mind, keep hanging in there,best, brian
Dear Ultramodern,
You are correct, it is a fact that we would not allow an animal to suffer to the extent that our loved ones suffer. Many times my thoughts have gone back to the time when Dad was farming. I know that had we allowed an animal to suffer so much and for so long, a vet would have reported us for animal cruelty.
Shortly before Dad totally lost his speech and would just say the odd word, he said 'Shot gun'. He was asking to die, he had had enough. I only wish that we could find respite from the dystonia and cramps, they are so painful for him. Has anyone any ideas on this aspect of the disease I wonder?
MY GOD IT IS JUST TOO AWFUL TO THIIIINK ABOUT - THE END IS NIGH AND STILLL PEOPLE ARE BEING FORCE FED - IT IS JUST TOO HORRENDOUS TO CONTEMPLATE - MY LOVE AND DEEPEST SYMPATHY GOES OUT TO ALL WHO HAVE LOVED ONES BEING TREATED LIKE THIS
Hi sha
How r u..?.
I know that the end is nigh as someone said but not yet awhile
Is ur situation helped with thE electric wheelchair.?
I have my aasessment 4 mine
Lol Jilll
Hey guys I hoping someone can help me. My grandmother has cortico basil. She has had it for about 5 yrs. her left side of her body is completely immobile and she is wheelchair bound. A month ago she had a cardio myopathy. She was sent home and was fine. Yesterday she was readmitted due to fluid in her lungs. They say her heart is fine but she can’t speak properly now today she only ate yogurt and a couple of bites of a bagel. She doesn’t make any sense when she talks. She is rambling about things that don’t make any sense.
I am afraid these are the last stages for her but I have no idea. Can anyone help me here...
Can some one help with some information. My grandmother has cbd and is having panic attacks every day are these common? She has been confined to a wheel chair for about a year and was diagnosed about 5 yrs ago.
She gets very sleep and has trouble keeping her eyes open. She is also constantly tired.
Hello Aneesanagji:
I see that this post was made on a string started 4 years ago (!) Possibly members won't see it as the string is old. Can you start a new post/string with your question?
BTW, my husband has CBD but no panic attacks. He is about 4 years in but just diagnosed this year. We have found that an antidepressant has worked well to help keep him calm and his mood a little more positive.
Good luck! Let me know if you need help making a new post
my mom has had this disease now for 3+ years....she is now in a nursing home and has been for a little over a year her arms are now contracted as is her left leg she can transfer to a wheelchair with one person ....she has been on a tube feed now for about 8 months and as of the past few days she is really non verbal and has trouble following commands.....she sleeps a lot . I am with her every day all day long most days....its so frustrating as I know she understands everything but cant hardly communicate. Lots of crying....for both of us
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