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It sounds like your mother was in the late stages of dementia, as I mentioned before that is actively dying and a facility would be in order at that time if you didn't have relatives to stay or be able to take one of those shifts. Other than that it sounds like you did keep her home until she was actively dying. By the time someone needs round the clock care they are no longer living.
Mild to moderate dementia can and is handled at home all the time without 24 hour care. It does not require a hospital staff. There are many stages to dementia and in the early stages staying with what's familiar can increase independence. Moving them to a facility can facilitate a quick decline.
As for me, I wouldn't want the care. Even if I have dementia. Like I said, if I have to move to the middle of a forest I'll plan accordingly. It's the same crap shoot in a facility. If I wander off and starve it's my business and my advice was for people who aren't there yet to plan accordingly and plan early. Get use to things before you have dementia set in. That way you aren't learning new skills at an impossible time. There are many devices that can guide a senior through the day with early and mid dementia.
This doesn't pertain to the OPs situation, but I wanted to address the items in bold because you are misinformed (that's not an attack: honestly, if you haven't been through it personally you don't know.)
1. My mother had ADVANCED/late stage Alzheimer's for NINE years. Her medical team most definitely said she was NOT actively dying. In fact, she was put on and off of hospice twice in that time BECAUSE she wasn't actively dying (so got removed from hospice). She wasn't considered actively dying until the last day of her life, when she finally got approved for hospice for the 3rd time.
2. No, moderate dementia CANNOT be handled at home without 24/7 care. There may be a family member (like a spouse) doing the care instead of a paid person, but they are most definitely taking care of the person 24 hours a day. My mother became incontinent at around Year 3. She was still living at home, cared for by my dad and supplementally by me. She also left the house and wandered during the few times my dad had an "oops" moment and forgot to lock the door and my dad didn't have his eye on her for a few minutes. She was completely dependent. Needed meals made. Needed help with bathing. Needed everything done for her.
3. There are many people who come on here and say things like "I'm going to just shoot myself if I get dementia!" Yes, it's a good idea, more power to you. The problem is that once you get to that point you aren't thinking rationally. I guarantee my mother didn't realize she had dementia when she had it and thus would not have presence of mind to have a rational thought like "I want out of this and I'm going to take my life."
Again, OPs parent's aren't in advanced dementia but I had to clear up your confusion about that subject.
I'd have let her and if I didn't want to help her then I just wouldn't. You can easily hire a person to check on her a few times a week. In home rehab is usually covered by medicare. Let her die there. That's what she wants. Her best interests are what she wants. Not her safety, not her health. She's old, old people die. She's not going to recover and become 40 soon. Why can't people just let nature take it's course?
I get that people don't want to be burdened taking care of their old parents so just don't. Let them try til they die. That's what most of them want. It's what I would want. Why let them suffer out the rest of their days?
I hope I fall on the floor and can't get up. I can remember all the good times while I lie there dying on my own floor. Way better than being saved and put in the pen to slowly suffer for years.
Quote:
Originally Posted by KathrynAragon
Well, to be fair, that particular poster that is being responded to with some hostility or at least with firmness, has been not only talking about the death they wish for themselves, but also directing comments specifically to other posters (myself included) about their situations with their own parents.
You used your situation as a response. "I'm wondering - do they need your help in order to move? If so, there's your answer - just don't help.
My mom was saying this sort of thing a few months ago, after we put her house on the market and it was pending. She decided she didn't like where she lived and wanted to move back to her house, her neighborhood, her yard, etc. Like your mom's case, it just wasn't safe for her to live there - plus it would have thrown me right back into having to help her constantly, having to worry about her, worrying about her isolation, whether she had fallen or not, etc. She went so far as to get really horsey with me and tell me "it's my house and my life after all!" and I finally just walked out on her after one of these pointless streams of comments from her. Like you probably feel, I felt sorry for her in so many ways - I WISHED she could still live in her own home and I felt terrible "taking that from her" but the reality was that I didn't take it from her - life and disabilities took it from her.
I just finally told her I refused to discuss it with her any more, because I couldn't reason with her."
If you use your situation as a response how can it not be responded too? You gave advice based on it so in order to give another choice it would include your situation. I only stated that I would not want my daughter or son doing what you did for me. I wouldn't burden them. If you only want agreement then don't put it out on a forum. It was up for debate the minute you posted it as a response to the O.P.
I get that you just don't like my response. Totally understand that. I have no problem with it, I expected you wouldn't. It's just what I would want, not what you should have done. Based on your circumstances it just validated my point. Don't burden your family with your old age care.
My old age choices have nothing to do with your moms. You just happen to be a good example as to why I will plan for my old age early. I won't burden my kids with my care.
Then, to be fair, does your family know you feel this way and not to come checking up on you ever again? How do you resolve birthdays, Christmas, etc.?
If you'd read my posts you'd know exactly how I'd resolve it. But, you didn't and are responding in kind.
I'll state it again for you. I'll plan early so I don't put that burden on my kids. What's wrong with that? There is obviously something wrong with it to warrant the attention.
As a caregiver, it does affect us. If a parent wants to die, when are we supposed to know it's "this time"?
I guess I was lucky. My father decided to die when he went into a nursing home. He refused a feeding tube,etc. He would not reconsider. He refused to eat or drink, and died in two weeks. It was not an excruciating kind of death.
Mom got cancer, a bad kind, with not much hope of a cure, just a prolongation of life for a short time. She decided she was done, went into hospice, and died in two months.
I miss both of them every day, but respect their choices.
You have to talk to your parents, and really listen even when it's hard, or when you don't agree with their choices. And then you will know when it's time.
It sounds like your mother was in the late stages of dementia, as I mentioned before that is actively dying and a facility would be in order at that time if you didn't have relatives to stay or be able to take one of those shifts. Other than that it sounds like you did keep her home until she was actively dying. By the time someone needs round the clock care they are no longer living.
Mild to moderate dementia can and is handled at home all the time without 24 hour care. It does not require a hospital staff. There are many stages to dementia and in the early stages staying with what's familiar can increase independence. Moving them to a facility can facilitate a quick decline.
If and when my mom needs care I will keep her at home. If I have to fill one or two of those shifts I can still hire the rest for a break and get respite for a week off. People do this all the time but by the time someone needs round the clock medical care they are dying already. ALF isn't a nursing home care or dementia care and that is what we are talking about. ALFs.
Your situation does not sound the same. Your mom would need hospice at that stage and a nursing home for late stage dementia, not ALF. ALF would not provide round the clock care, you'd still have to hire those aids and pay the 10,000 bucks on top of it as I stated up thread.
As for me, I wouldn't want the care. Even if I have dementia. Like I said, if I have to move to the middle of a forest I'll plan accordingly. It's the same crap shoot in a facility. If I wander off and starve it's my business and my advice was for people who aren't there yet to plan accordingly and plan early. Get use to things before you have dementia set in. That way you aren't learning new skills at an impossible time. There are many devices that can guide a senior through the day with early and mid dementia.
Other than that lesson learned. If you don't want your children making choices for you don't burden them with taking care of you as you age. I'm not so sure why you have a problem with what I'm saying but if the shoe doesn't fit, don't put it on. Your circumstances are different.
You don't have to tell me that's what I'll have because I'm unrealistic. That's just your opinion. You have no idea what I'll need as I age.
My mom is still alive and until the last few weeks, her dementia has been mild. It seems to be progressing now. Maybe you are confusing my mother with my MIL.
Anyway, my mom has moderate dementia - NOT severe (and not Alzheimer's - hers is vascular, which is a whole different ballgame). Believe me - not only could she not stay at home alone, she is also nowhere near dying. She has a lot of kick still left in her, and she is fairly active. She also doesn't need "round the clock medical care" but she does need people checking on her several times a day and she needs her meds given to her at the same time every single day.
So my mom doesn't need hospice care. She doesn't need round the clock care. She isn't dying. But she simply cannot live at home alone. She doesn't WANT to be alone. She also doesn't want to sit around the house with just one person at a time either - someone making $10 an hour. She doesn't want various aides taking her to the store or sitting around in her house watching TV with her. She wants varied activities. She still enjoys various activities even though she has some dementia.
And I promise you this - if you had MY mother, you wouldn't even consider taking care of her in your own home, or going over to her house and spending 8-10 hours a day with her. I'll just leave it at that.
Meanwhile, you can share your opinions and I will share mine too. You are adamant that you have the right to give out these opinions on other peoples' situations, so if you can dish it out, surely you can take it, right?
You specifically addressed my situation with my mom so I responded. And then you said what you would do differently than what I did, so I responded to that as well. And I'm pretty sure that's OK. I didn't expect you to like what my opinions are either.
This doesn't pertain to the OPs situation, but I wanted to address the items in bold because you are misinformed (that's not an attack: honestly, if you haven't been through it personally you don't know.)
1. My mother had ADVANCED/late stage Alzheimer's for NINE years. Her medical team most definitely said she was NOT actively dying. In fact, she was put on and off of hospice twice in that time BECAUSE she wasn't actively dying (so got removed from hospice). She wasn't considered actively dying until the last day of her life, when she finally got approved for hospice for the 3rd time.
2. No, moderate dementia CANNOT be handled at home without 24/7 care. There may be a family member (like a spouse) doing the care instead of a paid person, but they are most definitely taking care of the person 24 hours a day. My mother became incontinent at around Year 3. She was still living at home, cared for by my dad and supplementally by me. She also left the house and wandered during the few times my dad had an "oops" moment and forgot to lock the door and my dad didn't have his eye on her for a few minutes. She was completely dependent. Needed meals made. Needed help with bathing. Needed everything done for her.
3. There are many people who come on here and say things like "I'm going to just shoot myself if I get dementia!" Yes, it's a good idea, more power to you. The problem is that once you get to that point you aren't thinking rationally. I guarantee my mother didn't realize she had dementia when she had it and thus would not have presence of mind to have a rational thought like "I want out of this and I'm going to take my life."
Again, OPs parent's aren't in advanced dementia but I had to clear up your confusion about that subject.
I totally get that, honestly, my sister is a nurse. It's one of the reasons I won't go. That is why I stated time and time again that i'd plan early, before I get it as I'm pretty sure I will. If you plan early there are many ways to avoid what you went through. To say there isn't is not a fact, it's just means yours did not plan early.
There are many people who live at home with mid dementia, that are incontinent and roaming. My sister has cared for them. Yes, their spouse has a difficult time but my husband and I are committed to the fact that one of us might have that burden and we took it on with marriage. Some believe it or not still live alone and they are increasing home care options as we speak. Maybe i'll wander out and be a homeless person. We seem to leave those people alone.
My hope is that they find a cure for dementia before it's my time but, if they don't I have a plan. It won't involve my children. If I get robbed, or killed by my hired help then so be it and I'll make that perfectly clear to my kids. It's what I want, so they don't feel burdened by me. That's the last thing on this earth I want. To go out a burden to my family.
Your post hit home with me. That is exactly what I don't want. Hopefully, I accomplish it.
My mom is still alive and until the last few weeks, her dementia has been mild. It seems to be progressing now. Maybe you are confusing my mother with my MIL.
Anyway, my mom has moderate dementia - NOT severe (and not Alzheimer's - hers is vascular, which is a whole different ballgame). Believe me - not only could she not stay at home alone, she is also nowhere near dying. She has a lot of kick still left in her, and she is fairly active. She also doesn't need "round the clock medical care" but she does need people checking on her several times a day and she needs her meds given to her at the same time every single day.
So my mom doesn't need hospice care. She doesn't need round the clock care. She isn't dying. But she simply cannot live at home alone. She doesn't WANT to be alone. She also doesn't want to sit around the house with just one person at a time either - someone making $10 an hour. She doesn't want various aides taking her to the store or sitting around in her house watching TV with her. She wants varied activities. She still enjoys various activities even though she has some dementia.
And I promise you this - if you had MY mother, you wouldn't even consider taking care of her in your own home, or going over to her house and spending 8-10 hours a day with her. I'll just leave it at that.
Meanwhile, you can share your opinions and I will share mine too. You are adamant that you have the right to give out these opinions on other peoples' situations, so if you can dish it out, surely you can take it, right?
You specifically addressed my situation with my mom so I responded. And then you said what you would do differently than what I did, so I responded to that as well. And I'm pretty sure that's OK. I didn't expect you to like what my opinions are either.
That's great actually. So, no need to cut me down for a difference of opinion. That's all it is. I clearly didn't say you should have done anything differently, I want to make that clear. I only stated that I would.
I might have confused the two. I apologize if that's the case.
If you use your situation as a response how can it not be responded too? You gave advice based on it so in order to give another choice it would include your situation. I only stated that I would not want my daughter or son doing what you did for me. I wouldn't burden them. If you only want agreement then don't put it out on a forum. It was up for debate the minute you posted it as a response to the O.P.
I get that you just don't like my response. Totally understand that. I have no problem with it, I expected you wouldn't. It's just what I would want, not what you should have done. Based on your circumstances it just validated my point. Don't burden your family with your old age care.
My old age choices have nothing to do with your moms. You just happen to be a good example as to why I will plan for my old age early. I won't burden my kids with my care.
Great opportunity to clear up some additional misconceptions:
1. I don't mind at all discussing the personal situation with my mom. I don't mind you throwing in your two cents' worth. I don't mind that we disagree. I don't mind discussing our disagreements.
2. I'll tell you what I consider to be an unfair response - this phrase: ]"If you only want agreement then don't put it out on a forum." As should be VERY clear by my involvement on this forum, and the often spirited debates that I sometimes engage in, I'm clearly not simply looking for agreement. If someone says something that I disagree with, I will often (not always but often) respond, and back up what I'm saying with explanations as to exactly how I reached this conclusion (and sources, if applicable).
So -don't worry - I don't "only want agreement." Since I don't only want agreement, and since I appreciate a good discussion on various points of view, I'll probably continue to discuss issues with you and others unless people get overly rude or weird or ridiculously argumentative. I'm pretty patient but I do have my limits.
So I have some questions for you since you seem to think you understand where I'm coming from based on my posts. I'd like to know more about where you're coming from.
Specifically -
So far you've shared what you want for yourself in your own old age. Do you have parents? If so, have you discussed with them their expectations and desires for their old age? Do you know what they are expecting of you, if anything?
Do you have children? If so, have you told them your desires and expectations for your old age? Do you have the necessary legal documents and finances in place for your plans? Do you have a medical directive stating specifically that you wish to be allowed to die under (x) circumstances?
Last edited by KathrynAragon; 09-05-2017 at 12:12 PM..
I guess I was lucky. My father decided to die when he went into a nursing home. He refused a feeding tube,etc. He would not reconsider. He refused to eat or drink, and died in two weeks. It was not an excruciating kind of death.
Mom got cancer, a bad kind, with not much hope of a cure, just a prolongation of life for a short time. She decided she was done, went into hospice, and died in two months.
I miss both of them every day, but respect their choices.
You have to talk to your parents, and really listen even when it's hard, or when you don't agree with their choices. And then you will know when it's time.
That's what I want. I would also refuse food and drink at that time. It's hard of course but last wishes and a bit of control are also important to me. It's not for everyone and I understand that.
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