Stage 7: Very severe cognitive decline (Severe or late-stage Alzheimer's disease) In the final stage of this disease, individuals lose the ability to respond to their environment, to carry on a conversation and, eventually, to control movement. They may still say words or phrases.
At this stage, individuals need help with much of their daily personal care, including eating or using the toilet. They may also lose the ability to smile, to sit without support and to hold their heads up. Reflexes become abnormal. Muscles grow rigid. Swallowing impaired. Hopefully you have Advanced Directives and can avoid a feeding tube or respirator. Now is when you ask the MD if it is time for Hospice.
My husband is in the same state after 11 years of frontal-temporal dementia. A year ago he was happily eating steak, hamburgers, etc. He would watch TV and our dogs playing. He was in a wheelchair for the last two years and hasn't been able to talk for several years now, but he was content and even happy sometimes. I'm not sure what your dad is able to do or not do but expect a slow decline until he starts having trouble swallowing. You'll look back each month and realize he no longer is able to do "that" any more. The progress is much faster at the point when swallowing is difficult due to dehydration and lack of nutrition. It's at that point the POA or guardian needs to make decisions if no Advanced Directive is known. My husband has just reached that point and has gradually lost a lot of weight over a 3 month period. His swallowing is now severely impaired and we have to give him liquids with Thick It, spoonful by spoonful, dropper by dropper, because he doesn't know how to drink for the last month. At this state, the doctor said it could be just weeks. I did have the Hospice talk with his doctor last Wednesday and have decided not to have them. I have decided not to have a PICC line and let nature take its course. As long as he isn't in pain, I'm good with this decision and so are our children and his sister. God bless you and your siblings.
Hopice is a God send and can make his last days and weeks a lot more comfortable than you can by yourself. They do no life saving measures, just comfort care for him and for your family. Think again, they have been a blessing to me with several family members I have had to take care of.
P.S. The only thing that brightens my mother up a bit is Lucy's progress. Lucy is a tiny kitten I took in a few weeks ago, found in the middle of a back road desperately trying to eat a dead bird. She was in bad shape but after 2 vet visits, comfort and lots of good food she's thriving. I'll take Lucy to visit her in the next day or two.
I agree, a feeding tube is just a way to make them live in their misery that much longer. My mom has advanced directives and I am so glad. Before she became ill she always made me promise I would never do a feeding tube with her if she were at the end. I would go ahead and try to get hospice and they will give you a paper to fill out for advanced directives, you will have to get it notarized. Good luck.
A feeding tube is barbaric and, unless a patient is young enough to recover to live a normal and full life, it should be outlawed! Same goes for "visitation" when someone who has passed. I do not want my last memory of someone to be their dead body. I want to remember them as they were, the times we shared, the laughs, the good and the not so good. In Ireland they have a wake (do they still do that?) where the deceased has pride of place in the living room and the friends and relatives throw a party in his/her honour. Now that's the way to go!
My mother (88) has had dementia for many years which is probably associated with the parkinsons she's had for 15 years. She's in a nursing home now unable to sit up or stand, sleeps most of the time, can barely speak and eats next to nothing. Her time is drawing near. She's in no pain, just simply fading way. How long? I have no idea. She could go on for weeks or months or she could pass tomorrow. I just take it one day at a time.
Feeding tubes of various sorts and IV hydration may be fine for some folks who have dysphagia but otherwise a quality of life and ability to particpate, with or without hope of getting better. A PICC is a peripherally inserted central catheter that goes in a proximal vein and towards the vena cava, so more concentrated things can be put in it without irritation and it does not have to be changed often like a regular IV. We even use them for kids who will need a lot of blood draws to save them being stuck all the time. If tube feeding is a long term or permanent arrangement, getting a G-button so you don't have to have a tube in your nose is usually best though I have a teenage patient with a severe muscular dystrophy who has chosen to keep an NG and does not mind it.
It can be hard to decide; the medical literature supports NOT doing tube feeds for severe end stage dementia, as neither quality NOR length of life is generally improved. This was NOT studied in the same way as stroke or ALS and would not apply to a non-dementia diagnosis; even with that there can be exceptions and it should not be a hard and fast rule. If someone has to be restrained indefinitely to keep a tube in, that is a huge reason on the NO side. If someone is hungry or thirsty, that would be a huge reason on the YES side, but a lot of times this is not the case.
(Severe or late-stage Alzheimer's disease)
In the final stage of this disease, individuals lose the ability to respond to their environment, to carry on a conversation and, eventually, to control movement. They may still say words or phrases.
At this stage, individuals need help with much of their daily personal care, including eating or using the toilet. They may also lose the ability to smile, to sit without support and to hold their heads up. Reflexes become abnormal. Muscles grow rigid. Swallowing impaired.
Hopefully you have Advanced Directives and can avoid a feeding tube or respirator. Now is when you ask the MD if it is time for Hospice.
My husband has just reached that point and has gradually lost a lot of weight over a 3 month period. His swallowing is now severely impaired and we have to give him liquids with Thick It, spoonful by spoonful, dropper by dropper, because he doesn't know how to drink for the last month. At this state, the doctor said it could be just weeks. I did have the Hospice talk with his doctor last Wednesday and have decided not to have them. I have decided not to have a PICC line and let nature take its course. As long as he isn't in pain, I'm good with this decision and so are our children and his sister.
God bless you and your siblings.
It can be hard to decide; the medical literature supports NOT doing tube feeds for severe end stage dementia, as neither quality NOR length of life is generally improved. This was NOT studied in the same way as stroke or ALS and would not apply to a non-dementia diagnosis; even with that there can be exceptions and it should not be a hard and fast rule. If someone has to be restrained indefinitely to keep a tube in, that is a huge reason on the NO side. If someone is hungry or thirsty, that would be a huge reason on the YES side, but a lot of times this is not the case.
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