My dad has had PSP for around 5 years and is now in a nursing home. Yesterday, when I went to visit him he had a choking fit after sipping his cup of tea. We are use to him choking and spraying everywhere, however, this choking fit was very different. I have never seen this look on his face before, it was a look of fear in his eyes, of pain and it was how he tensed his upper half of his body and how he stared at me. It was awful.
On his birthday 8/1/16 before we all gathered round him to celebrate his day he spoke to my brother and said "I feel like I'm coming towards the end of my life, look after your mother".
I'm not sure what the end involves with this disease. Do the choking fits become constant at the end?
Thanks,
Mel
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Melhukin
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Hi, Mel. Yes, choking can become constant as the swallow reflex fades. This causes aspiration pneumonia, which is a common proximate cause of death with psp. However, thickening his drinks is something that the nursing home should be doing if this is an ongoing issue, and, of course, this is why many patients and carers opt for PEG feeding. Choking is painful and scary. You really ought to discuss this with the nursing home, your family and your father's primary medical care provider. Best wishes, Easterncedar
Yes thicken use a straw or spoon I had been using the. Ordinary straws but cut them short so mist such an effort , I bought plastic one now which have a bigger opening . Easier to suck so I thicken a bit more to ease choke . Comes and goes , a lot is to de with the breathing patter . Cannot take deep breaths or blow hard
Hi Mel, i agree with EC, the home should be adding thickner to all his beverages. My mother in law is in the same boat, we have added thickner to all her drinks and there is never a problem. How is he with food?
The speech therapist needs to be involved and they will tell the nursing home how thick the drinks need to be and how his food should be mashed or blended .?its horrible and scary
Thin liquids and psp equals choking fits....even if he can eat a pureed diet. If they will do it in the nursing home, have them do a swallow study to see what consistencies he can tolerate. With my husband they gave him barium and then exrayed his throat with a video. (I'm not getting details right sorry) Then they had him swallow difft consistancies.....this way they can tell what liquid thickness he can tolerate...most likely it won't be thin anymore....
But even knowing which consistency best suits him You all might want to go forward on that conversation about "coming toward the end of my life..." Not something one wants to talk about , but talked about or not it is inevitable. I don't want to sound like Miss Negativity but you do need to know how to take care of your mom , ie wills, medical power of attorney, brain donation, funeral etc. One person who just had their loved ones funeral had had the music picked out years prior to the need....Bruce and I have that too...though we don't have all the legal stuff done....that's just pure lazy on my part...but remember.....
They do have thicker in the home not sure how much they're putting in his drinks. He drinks out of a special spout cup. I often feed him his dinner and only occasionally he will choke on food. I think it's mainly liquid. He has had the speach therapist observe him. I've noticed over the passed few weeks he just stares into space and his eyes looked distant.
My husband does this too. He is refusing to have thickeners as he hates them! However he can't drink tea and has problems with thin liquids. Going to see if a different one might work.
He also stares through me at times. I am talking to him but he's not with me! After a few seconds he comes back. No idea why this happens. Anyone?
My dad is also obsessed with thinking my mum has some money in a bank account around £5,000 she needs to sort out but my mum doesn't. Every time we go he mentions have we sorted the money out etc, some days we play along with him and other days tell him yes we have sorted it out.
We've even taken in paperwork for him to look at but he keeps going over the same thing. We have now just put this down to his illness.
I don't think I can add too much to the above. Bill refused thickeners and often chocked on his food. He did agree to soft food. Mashed potatoes meatloaf etc. He developed a UFO after some kidney procedures and was in the hospital for 6 weeks. His coughing sent him to icu and they decided it was not safe for him to eat it drink anything by mouth hence the peg tube. His decision is prolong his life never suspecting that he would go do quickly. This was over Christmas 2015. He went to heaven in july. 2016. PSP works very quickly for some once it gets going. So don't put off the end of life talks and things that need to be done as you may run out of time. Tell him how much he is loved. Spend as much time as you can hugging and holding his hand . The staring eyes are I think part of the fixed pupils. His mind is still there even if he does not respond. Love him and tell him you do while you can. Celebrate with him while you can Bring the kids and grandkids.
If he is drinking us Thickin its a powder you mix with their drink and it makes it thick helps alot with the choking. Looks gross but dont show them and they will drink it just fine, maybe its just me because I see what it looks like.LOL
My husband has lost 40 lbs in the last year. His choking diminishes his desire to eat. He is on thickening now as well as finger foods. And every evening I make him a root beer float which he loves. I just wonder what the next stage will be? It has been five years with the last year being heartbreaking. For both of us. How can it get any worse? What else can we expect? I just enlisted the help of hospice and they have been such a blessing. For both of us. Larry really enjoys their visits and it gives me relief. I am still in the angry stage. I guess angry at God. Larry is truly the love of my life and like all of you we both feel robbed!
The choking fits are awful to watch as my dads face turns red and he struggles to catch his breath and recover. If you show anything to my dad to look at you have to hold it at eye level as he doesn't understand to look down. His speech has got to the stage where you have to guess what he may be talking about and then just talk about anything as saying "pardon" is no use as his speech is so bad.
We are now trying to get help in buying a larger wheelchair with a head rest and better support.
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