Thank you, canary, for your hug,and your kindness. Not an easy time. Xx
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Issues with dad's swallowing confirmed.
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Thank you, canary, for your hug,and your kindness. Not an easy time. Xx
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Thank you, Red, for your ongoing kindness. Dad is now refusing to open his eyes, but I know he's 'awake'- maybe he's just bored of me waffling! Please know I also think of you, and you losing your dad as you did, in this awful way. Xx
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I was told by a nurse that the way dementia affects your ability to walk and to function, it can also have an affect on the eyelids. Although I have no experience of this. Makes you wonder. My Dad slept alot but he was awake for long periods. The days leading up to his death he bizarrely hardly slept, just stared and twitched. The day before he died was even less sleepy and more staring. Hard to get your head around really. Have you tried singing! I sang Sweet Caroline to my Dad on his last day on earth, I even got a smile!! Can't say I knew the words to the verses ha, just made them up ( the smile was probably a snigger as I didn't know the words). You are doing so well, keep on keeping on to nick your phrase!! X
That's interesting, Red, I guess it makes sense it's maybe easier to keep your eyes closed too, I think I would!
So.. minor rant alert..dad does not know me now. I suspected it, but today, I knew it. Not even a flicker of recognition when he did open his eyes, never said a word. His GP is seeing him tomorrow, again. I guess she will be happy that he's responded enough to the last course of antibiotics to be here in this deteriorating state, waiting for the
Next chest infection. Slumped in a chair, unable to move, or ask for help, or say if he's in pain. Only opening your eyes because you
got a fright with another resident screaming across the room. Rant over......bad day, I guess. X
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Sending you love and strength Gwendy, ive been following your posts. I know how it feels, mum has been very, very slowly deteriorating since her sharp decline at Christmas. She eats, smiles, but is totally immobile and is completely in a world of her own but her body still ploughs on. It feels relentless. I hope you and your dad get peace soon x
It does indeed feel relentless.. the only peace we will get will cause us even more pain. What an awful illness, for all. Thank you, Timeout. I wish you didn't know how it feels, and that you and your mum were spared this too. Love and strength to you too. Xxx
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I have dysphagia and waiting to have a CT scan toeliminate frontotemporal dementia
Hi Gwendy1, I'm oldman1952 so not that old. I am an ex psychiatric nurse who specialised in assessment of the older person. I myself have dysphagia. As my dysphagia gets worse I would like to think that I could have a choice about having a PEG inserted to feed me. I just hate choking. I have all my faculties but at the moment but I am being tested for fronotemporal dementia, I am 64 years old. The signal that is triggered to make me swallow has all but gone. I have to watch what I eat and at times I am unable to swallow independently. I have thick sticky saliva trying to enter my trachea and I just don't have the ability to do it. It is very frightening. Can I ask you Gwendy1 have you ever suffered with dysphagia? Just thickening food and giving small amounts of food on a teaspoon is just as frightening if it doesn't go down the oesophagus. Be it large or small it does not matter it can still do the same damage.
PEG feeding however will give your dad a much better quality of life. Do not forget that it might not be the food or drink that your dad has that can cause aspiration pneumonia, when he is asleep he can have stomach contents over spill into the trachea bypassing the epiglottis. I know that it is your decision not to PEG dad, but just think that when he does choke even if he has stage 3 dementia he can always have that fog clearing and will know that he is choking on food, making him feel low in mood. Having a PEG is not about quickness of feeding someone it's about his dignity. He can still eat and drink like the rest of the residents in the care home but he is getting a nutritious diet, full of calories and the minerals he needs to promote a healthy body and life. Best regards Peter.
Hi Gwendy1, I'm oldman1952 so not that old. I am an ex psychiatric nurse who specialised in assessment of the older person. I myself have dysphagia. As my dysphagia gets worse I would like to think that I could have a choice about having a PEG inserted to feed me. I just hate choking. I have all my faculties but at the moment but I am being tested for fronotemporal dementia, I am 64 years old. The signal that is triggered to make me swallow has all but gone. I have to watch what I eat and at times I am unable to swallow independently. I have thick sticky saliva trying to enter my trachea and I just don't have the ability to do it. It is very frightening. Can I ask you Gwendy1 have you ever suffered with dysphagia? Just thickening food and giving small amounts of food on a teaspoon is just as frightening if it doesn't go down the oesophagus. Be it large or small it does not matter it can still do the same damage.
PEG feeding however will give your dad a much better quality of life. Do not forget that it might not be the food or drink that your dad has that can cause aspiration pneumonia, when he is asleep he can have stomach contents over spill into the trachea bypassing the epiglottis. I know that it is your decision not to PEG dad, but just think that when he does choke even if he has stage 3 dementia he can always have that fog clearing and will know that he is choking on food, making him feel low in mood. Having a PEG is not about quickness of feeding someone it's about his dignity. He can still eat and drink like the rest of the residents in the care home but he is getting a nutritious diet, full of calories and the minerals he needs to promote a healthy body and life. Best regards Peter.
Unfortunately, many people with dementia will not tolerate peg feeding, it's gets pulled out. Although my OH never was never fed this way, he had to had an op, and managed to pull out his epidural ( still not worked out how!) as well as a couple of drains and a cannula. Had a go, apparently, but thought the better of it! This whilst in the nearest bed to the nurses room!
Hi Gwendy. I feel your pain as going through same with my dad. Currently sat at 1.30am holding my dad's hand while he holds on tight, rubs my hand and sleeps/stares and twitches. I tried to sleep but feel I should stay with him as long as I'm able. My mum is asleep nearby as she is exhausted with it all after weeks of being here every day with him. Don't know whether he will make the night. Not sure whether I want him to or not. At the moment the ward is peaceful and he's comfortable and not in pain. So hard to watch him slipping away gently. He'd be 90 next week....thinking of you Gwendy. Strength to us both xx
Hi Gwendy so sorry to hear your Dad doesn't recognise you anymore. It's expected but it still stabs you in the heart, it made me feel like I didn't matter anymore, which was stupid and selfish of me really, I just hoped that if my Dad didn't know me that he didn't know what was happening to him either. I pray that your Dad is the same, not knowing what he is going through. It's so sad. My thoughts are with you xx
Emmy_83 such hard times, stay strong for your Mum, she needs you. You must get some rest. Red x
Hello,Peter, and thank you sincerely for your reply. Of course you can ask if I have ever suffered from dysphagia, and I am so thankful that I haven't. I should clarify, perhaps, that decisions that are made regarding my dad are not taken easily, and that I have read many articles regarding dad's physical and mental health issues. However, my main concern has always been my dad's views and beliefs. My dad was a head teacher, and was not without a definite opinion on most things in life, to put it politely! My dad and I were very close, even before their illness I'd see my parents a couple of times a week. Dad was a full on force, always on the go, playing sports into his 70's. dad couldn't handle illness-physical or mental. He was almost afraid of it. He was terrified of hospitals-ran out of one when waiting for a knee X-ray in his 50's!! His father had oesophageal cancer, and I remember dad being horrified that grandad couldn't eat, was fed by nasogastric tube. I know dad wouldn't want a PEG, as much as I can know, without him being able to tell me anymore. I'm afraid that the salt team were of the opinion it wouldn't be suitable for him either, his dementia has advanced rapidly. I hope that things go well for you, Peter. I also wish that I had thought to have more in depth conversations with dad regarding health decisions which have arisen, when he was able-a lesson for us all,perhaps. Thank you again. Take care. X
Red, as always, you've got to the heart of it. How can dad not know ME!!..his wee girl (late 40's ;-))I've thought about what you've written, and I'm taking comfort in that, as you say, maybe this means he doesn't know about the other stuff he's going through either. I pray for that too.❤️️Xx
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We've been told the last thing to go is their hearing so we've been speaking and chatting to my dad. So he may not recognise your face but he may recognise your voice somewhere in there. Hugs to you Gwendy. It's a hard journey we're on xxx
Thanks Emmy. My dad has another chest infection ( don't ask, cos I can't count them anymore!!) He is a wee machine...! Your dad sounds very poorly just now. I'm so sorry, thank you for thinking of us, you have so much sadness to deal with yourself just now. ❤️️X
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...I guess that's my update too. Another chest infection, diagnosed by GP, who doesn't know dad really, and never will now. So, more antibiotics... I can't count, seriously, how many courses he's had this year anymore. I don't want to write anymore how I feel about this. I don't have the vocabulary to express the pain, distress and confused feelings I have, let alone how my dad would feel if he still had a voice. I can only hope that he will be comfortable. That's all I want for him.
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