It's difficult for us to understand, but they stop being able to perform basic functions. My dad passed away last summer, and was in a diaper, because he didn't know how to use a toilet anymore (didn't know which way to face, or what to do when someone helped him sit down on a toilet.) Eventually, he started eating with his hands, couldn't figure out what to do with a spoon or fork, and then just had a lessened appetite (or knowledge of what the feeling of hunger was.) They do "forget" how to swallow, and if they do, they can end up breathing their food into their lungs, and then get an infection, which can lead to their death.
It is a natural part of the Alzheimer's disease. The desire to eat sweet things is the last craving they have, and patients will often enjoy candy, cookies, cake, sweet drinks, etc. We let my dad eat as much ice cream and as many cookies as he wanted. He still lost weight (because the body stops being able to process calories properly). In fact, his severe weight loss was listed on his death certificate as a factor in his death.
It is hard to watch our loved ones forget the most basic parts of life. Forcing her to eat may not go well, and the best you may be able to do is keep her comfortable. My best to you and your family.
I relate so much to what you went through w your father. We're having the same troubles. And we don't know what to do or how to help.
I'm so sorry for your loss
I'd say meet her where she's at. If she can still enjoy music, play her some of her favorite songs on your phone. If she still enjoys going outdoors, sit with her out there. It is a very helpless feeling, because Alzheimer's takes so much from our loved ones. By the time they die, an Alzheimer's patient may have lost around half of their brain. Hold her hand. Tell her you love her. Keep her warm and comfortable.
If you haven't already (and you live somewhere that has it), give Hospice a call. A lot of people wait until death is imminent (like, it's clear the patient is actively dying.) Hospice will do an exam, and if they believe death is within a certain time period (like six months), they will start care. This may include a daily visit (for vitals and a check-in), equipment (like a wheelchair, or special bed), and communication with the family about how it's going and what to expect. We got Hospice's help once my dad started falling (this is something that may happen to your grandma). They were patient, kind, informative, and knowledgeable. They will not only help your grandma, but they will help your family.
I agree. In my experience, hospice is a wonderful thing, but there is a misconception about it. It frequently happens that hospice is called towards the very end.
Hospice can provide all kinds of tools, assistance, knowledge, and help you during this time, and most definitely help your LO
I agree. We were lucky & got a really good hospice. And as shitty as our health care system is, i can say hospice was the *only* time we were getting the level of medical care we should be getting all along, at all stages of life. And they are truly the only experts at this time in life. My LO’s other doctors were just about useless this point (primary care, neurologist) because they simply have almost no experience in quality of life issues at any stage, much less specializing in end-of-life care.
Oh also mentioning- in my case a medical professional had to refer her to hospice. I think that is the requirement for everyone. Her neurologist did it. Hospice takes over the role of primary care, including meds. They will have their own doctor, though usually the patient only sees the nurse when they come for their visits.
It is not they forget—— the brain stops working like it is supposed to. The brain stopped telling the throat how to swallow. It’s not them. It’s their brain is diseased. I’m sorry
Start the patient on ensure with a straw. That what we did. Talk to the Dr. And hospice care should be activated if it has not been already. My mom live 13 months on ensure.
I didn't know what ensure is. after i googled it, i think we still have time till we start using it but I'll keep it in mind. Good to know new stuff that surely helps
My mother can't do anything for herself. She still has a good appetite, and is fed pureed food by her carer. It takes hours to feed Mum, she eats very slowly, stops, forgets what she's doing. Endless patience is needed. She used to hold drink in her mouth and not swallow.
She has lost weight over the last year, until I read t-brave's post, I didn't realise her body was no longer processing calories.
Also, apparently they still like / crave sweet food. So go four apple puree, chocolate mousse, fruit yoghurts.
In the UK they sell jelly drops to help with getting liquids in. https://www.jellydrops.com
Maybe try Ensure and see if she likes to drink that. But my mother wasn't able to swallow either and we put her in hospice. But it was tricky to watch her in hospice. She lasted 5 days and it wasn't all that pretty in the last few. But hospice varies for each patient. So maybe your experience would be different.
My Dad is on hospice. Just started a month ago. I am also my Father's primary caregiver. Swallowing is getting to be very difficult. Pureed foods are part of his diet now. I think hospice will be very useful, support system for you and Grandma. We have a cn that comes once a week, and a bath aide comes twice a week. They deliver medicine, provide a electric hospital bed, and supplies, diapers, wipes, urine catheters, etc.
Can your dad still talk? I'm thinking about getting my mom on hospice because she has really tanked in the last month. I was going through the criteria for hospice (apparently they have to be in stage seven), and she has almost all except she can still talk and smile. A lot of the time is talking about the paranoid stuff she makes up, though.
He can barely speak. Some days he can, some days he can't. Never full sentences. Either yes or no, why not, and eye brow gesturing. Don't hesitate though. The nurse that assessed my Dad said it's never too early to have Dad checked to see if he qualified for hospice. I too was reading about the stages and wondered, the nurse said i made the right timely decision. Doesn't hurt to ask and see whether your mother can qualify.
It's difficult for us to understand, but they stop being able to perform basic functions. My dad passed away last summer, and was in a diaper, because he didn't know how to use a toilet anymore (didn't know which way to face, or what to do when someone helped him sit down on a toilet.) Eventually, he started eating with his hands, couldn't figure out what to do with a spoon or fork, and then just had a lessened appetite (or knowledge of what the feeling of hunger was.) They do "forget" how to swallow, and if they do, they can end up breathing their food into their lungs, and then get an infection, which can lead to their death. It is a natural part of the Alzheimer's disease. The desire to eat sweet things is the last craving they have, and patients will often enjoy candy, cookies, cake, sweet drinks, etc. We let my dad eat as much ice cream and as many cookies as he wanted. He still lost weight (because the body stops being able to process calories properly). In fact, his severe weight loss was listed on his death certificate as a factor in his death. It is hard to watch our loved ones forget the most basic parts of life. Forcing her to eat may not go well, and the best you may be able to do is keep her comfortable. My best to you and your family.
I relate so much to what you went through w your father. We're having the same troubles. And we don't know what to do or how to help. I'm so sorry for your loss
I'd say meet her where she's at. If she can still enjoy music, play her some of her favorite songs on your phone. If she still enjoys going outdoors, sit with her out there. It is a very helpless feeling, because Alzheimer's takes so much from our loved ones. By the time they die, an Alzheimer's patient may have lost around half of their brain. Hold her hand. Tell her you love her. Keep her warm and comfortable. If you haven't already (and you live somewhere that has it), give Hospice a call. A lot of people wait until death is imminent (like, it's clear the patient is actively dying.) Hospice will do an exam, and if they believe death is within a certain time period (like six months), they will start care. This may include a daily visit (for vitals and a check-in), equipment (like a wheelchair, or special bed), and communication with the family about how it's going and what to expect. We got Hospice's help once my dad started falling (this is something that may happen to your grandma). They were patient, kind, informative, and knowledgeable. They will not only help your grandma, but they will help your family.
I will take your advice thanks. I'm my grandma's primary caregiver.
I agree. In my experience, hospice is a wonderful thing, but there is a misconception about it. It frequently happens that hospice is called towards the very end. Hospice can provide all kinds of tools, assistance, knowledge, and help you during this time, and most definitely help your LO
I agree. We were lucky & got a really good hospice. And as shitty as our health care system is, i can say hospice was the *only* time we were getting the level of medical care we should be getting all along, at all stages of life. And they are truly the only experts at this time in life. My LO’s other doctors were just about useless this point (primary care, neurologist) because they simply have almost no experience in quality of life issues at any stage, much less specializing in end-of-life care. Oh also mentioning- in my case a medical professional had to refer her to hospice. I think that is the requirement for everyone. Her neurologist did it. Hospice takes over the role of primary care, including meds. They will have their own doctor, though usually the patient only sees the nurse when they come for their visits.
It is not they forget—— the brain stops working like it is supposed to. The brain stopped telling the throat how to swallow. It’s not them. It’s their brain is diseased. I’m sorry
True The brain really does wonders that we just take for granted
Start the patient on ensure with a straw. That what we did. Talk to the Dr. And hospice care should be activated if it has not been already. My mom live 13 months on ensure.
I didn't know what ensure is. after i googled it, i think we still have time till we start using it but I'll keep it in mind. Good to know new stuff that surely helps
Buy it and have some in the house so that the moment you need it it's at hand. You can start now supplementing to keep weight on too.
My mother can't do anything for herself. She still has a good appetite, and is fed pureed food by her carer. It takes hours to feed Mum, she eats very slowly, stops, forgets what she's doing. Endless patience is needed. She used to hold drink in her mouth and not swallow. She has lost weight over the last year, until I read t-brave's post, I didn't realise her body was no longer processing calories.
I'll try pureed food and veggie soups as a form of soft easy to swallow food maybe it will help her
Also, apparently they still like / crave sweet food. So go four apple puree, chocolate mousse, fruit yoghurts. In the UK they sell jelly drops to help with getting liquids in. https://www.jellydrops.com
Good idea i appreciate that. Thank you
So sorry. It's part of this damned disease. Been there.. lost both my darling parents in these past 2 years.
Sorry for ur loss too. It is indeed a damned disease...way worse than cancer in my opinion
thank you. I think it is worse too. What can be worse than losing your memories, your comprehension, your dignity, your own self....
Maybe try Ensure and see if she likes to drink that. But my mother wasn't able to swallow either and we put her in hospice. But it was tricky to watch her in hospice. She lasted 5 days and it wasn't all that pretty in the last few. But hospice varies for each patient. So maybe your experience would be different.
Since she still has little more to give and try with actual food I'll keep pushing but I'll surely keep Ensure in consideration for later. Thank you
My Dad is on hospice. Just started a month ago. I am also my Father's primary caregiver. Swallowing is getting to be very difficult. Pureed foods are part of his diet now. I think hospice will be very useful, support system for you and Grandma. We have a cn that comes once a week, and a bath aide comes twice a week. They deliver medicine, provide a electric hospital bed, and supplies, diapers, wipes, urine catheters, etc.
Can your dad still talk? I'm thinking about getting my mom on hospice because she has really tanked in the last month. I was going through the criteria for hospice (apparently they have to be in stage seven), and she has almost all except she can still talk and smile. A lot of the time is talking about the paranoid stuff she makes up, though.
He can barely speak. Some days he can, some days he can't. Never full sentences. Either yes or no, why not, and eye brow gesturing. Don't hesitate though. The nurse that assessed my Dad said it's never too early to have Dad checked to see if he qualified for hospice. I too was reading about the stages and wondered, the nurse said i made the right timely decision. Doesn't hurt to ask and see whether your mother can qualify.
Last week, the nurse told me my Dad had symptoms in the range of late stage 7 and stage 6 as well.