A wife has posted on my support page that she wishes this was over, but feels like a horrible person for wanting that. I was asked to write about my thoughts on this. This is what I shared.
Wanting this to be over shows mercy and a deep understanding of this disease, something most will never understand, unless they walk this. It is not lack of compassion, it is a dose of reality regardless of what emotions played into that decision.
A few years ago I made a meme about some words that came to my heart and wanted to share them. " The pill of perception is easily swallowed, but it is a dose of reality we tend to choke on!". Those whom have been diagnosed and those that are their caregivers, are living the reality, not the preception of this disease. We choke so hard on reality, that tears tend to be a permanent fixture on our face.
There comes a point when some really hard choices must be made. Medications, supplements and diet restrictions for example. When you are living the really of #EarlyOnsetAlzheimer or any disease with no cure, and you see your loved one continue to decline, and you know that not one person has survived since 1906, ( first case of Early onset) you are forced to put down the "Pill of Perception" and swallow a dose of reality.
Those of us whom have stopped all of the medications except for antidepressants and anxiety, did so because nobody wants to prolong this suffering. It is done out of love, yes, even if the decision is made during times of frustration and extreme stress. Nobody, faced with ANY TERMINAL disease, especially one that currently has no cure, should never, ever feel like they are a horrible person, because they don't want to prolong the suffering of someone they love, under these circumstances.
I have been recomend, by well many friends, family and strangers, to have my husband do and take all sorts of supplements and avoid eating certain things or add an abundance of others.
The bottomline is this... Someone with a disease that has no known cure, not a single drug that has proven to slow it down ( since every case is 100% different and regardless, still has a 100% death rate) and has the most horrific and inhuman, prolonged death... deserves to eat and drink anything they want and say no to something that may or may not prolong their suffering.
I had a woman who insisted that my husband's disease was caused by fungus and wanted him to eat cabbage, onions and large amounts of garlic. When I explained that fungus may be linked to certain dementia cases, it has nothing to do with Early-onset... she actually answered back, "So what, you don't want to get your husband well?". I answered her back, " Untill there is a cure, I cannot cure my husband, but I can make sure he is no longer suffering from the terrible side effects of prescription drugs and he is not restricted to what he wants to eat or drink in his remaining days. "
If you have come to this point in this disease, and just want this to be over, do not feel shame, do not feel guilt. Having a deep understanding of your personal situation has brought you and you loved one to this decision, nothing more and nothing less.
If someone shames you, don't be angry with them, educate them. If you are dealing with someone that is unable to understand reality, tell them what we say in the South... " Bless your heart" and move on. #WeWalkThisTogether and the reality of some folks, you just need to leave behind.
Wanting this to be over shows mercy and a deep understanding of this disease, something most will never understand, unless they walk this. It is not lack of compassion, it is a dose of reality regardless of what emotions played into that decision.
A few years ago I made a meme about some words that came to my heart and wanted to share them. " The pill of perception is easily swallowed, but it is a dose of reality we tend to choke on!". Those whom have been diagnosed and those that are their caregivers, are living the reality, not the preception of this disease. We choke so hard on reality, that tears tend to be a permanent fixture on our face.
There comes a point when some really hard choices must be made. Medications, supplements and diet restrictions for example. When you are living the really of #EarlyOnsetAlzheimer or any disease with no cure, and you see your loved one continue to decline, and you know that not one person has survived since 1906, ( first case of Early onset) you are forced to put down the "Pill of Perception" and swallow a dose of reality.
Those of us whom have stopped all of the medications except for antidepressants and anxiety, did so because nobody wants to prolong this suffering. It is done out of love, yes, even if the decision is made during times of frustration and extreme stress. Nobody, faced with ANY TERMINAL disease, especially one that currently has no cure, should never, ever feel like they are a horrible person, because they don't want to prolong the suffering of someone they love, under these circumstances.
I have been recomend, by well many friends, family and strangers, to have my husband do and take all sorts of supplements and avoid eating certain things or add an abundance of others.
The bottomline is this... Someone with a disease that has no known cure, not a single drug that has proven to slow it down ( since every case is 100% different and regardless, still has a 100% death rate) and has the most horrific and inhuman, prolonged death... deserves to eat and drink anything they want and say no to something that may or may not prolong their suffering.
I had a woman who insisted that my husband's disease was caused by fungus and wanted him to eat cabbage, onions and large amounts of garlic. When I explained that fungus may be linked to certain dementia cases, it has nothing to do with Early-onset... she actually answered back, "So what, you don't want to get your husband well?". I answered her back, " Untill there is a cure, I cannot cure my husband, but I can make sure he is no longer suffering from the terrible side effects of prescription drugs and he is not restricted to what he wants to eat or drink in his remaining days. "
If you have come to this point in this disease, and just want this to be over, do not feel shame, do not feel guilt. Having a deep understanding of your personal situation has brought you and you loved one to this decision, nothing more and nothing less.
If someone shames you, don't be angry with them, educate them. If you are dealing with someone that is unable to understand reality, tell them what we say in the South... " Bless your heart" and move on. #WeWalkThisTogether and the reality of some folks, you just need to leave behind.
