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Hugs to you and your husband. I hope your Christmas is calm and restores some peace to you.
At some point I think you should send a copy of what you wrote here to your siblings, they need to hear it.
I doubt it would matter. They are too clueless.
Some people are just not good with reality and they say the stupidest things. Obviously thought-less, ignorant, and insensitive to the sick person and the carer.
Some people are just not good with reality and they say the stupidest things. Obviously thought-less, ignorant, and insensitive to the sick person and the carer.
Va-Cat, I am so so sorry you are not getting support from your family and they said those hurtful things. I just want to wish you a very Merry Christmas and hope you have a peaceful day and may you join your husband as soon as weather allows.
I am so sorry you are experiencing such mental anguish. I hope you will have better days.
Having said that, please don't say that there isn't any treatment. Others who may be in a similar situation, especially when they are first diagnosed or have a family member who has been diagnosed with this awful disease, people who come here for help or solace might despair at reading that. There is not yet a cure, true, but there are drugs that help manage symptoms.
Alzheimer's: Drugs help manage symptoms from Mayo Clinic Oct. 12 2022:
"Research into more-effective Alzheimer's drugs is ongoing. If you can't take the approved medications or they don't work for you, ask your doctor if you might be eligible for a clinical trial."
Your husband may or may not be helped with drugs, but medicines do help some people.
I do hope the roads will clear and that you and your husband spend some time together soon.
Hugs.
Thank you for your thoughts. I apologize for contradicting you but I don't want to give false hope. You may be correct about Alzheimers as I have never done any research into that specific disorder. However, Alzheimers is completely different from Frontotemprol Dementia. My husband was diagnosed with FTD in 2015. There are currently no treatments to slow the progression or to cure FTD. It is different from other neurological disorders because it attacks the Frontal and Temprol lobes of the brain, its onset is usually at a younger age and its progression much faster (only 6 to 8 years from onset to death). Interestingly, DH has been on Aricept (one of the drugs the Mayo study mentions) for the last three years. I've noticed no difference in the progression of the disease.
It is important for a caretaker to understand the specific neurological disorder the person in their care is suffering from. DH went through nine hours of neuropsychological testing to assist in his diagnosis.
Thank you for your thoughts. I apologize for contradicting you but I don't want to give false hope. You may be correct about Alzheimers as I have never done any research into that specific disorder. However, Alzheimers is completely different from Frontotemprol Dementia. My husband was diagnosed with FTD in 2015. There are currently no treatments to slow the progression or to cure FTD. It is different from other neurological disorders because it attacks the Frontal and Temprol lobes of the brain, its onset is usually at a younger age and its progression much faster (only 6 to 8 years from onset to death). Interestingly, DH has been on Aricept (one of the drugs the Mayo study mentions) for the last three years. I've noticed no difference in the progression of the disease.
It is important for a caretaker to understand the specific neurological disorder the person in their care is suffering from. DH went through nine hours of neuropsychological testing to assist in his diagnosis.
Well said. When my Significant Other was diagnosed with FTD, people who weren't familiar with all the types of dementias just didn't understand how different FTD is from Alzheimers. Well-meaning neighbors kept introducing me to others whose spouses had ALZ, thinking we'd be able to share ideas and experiences. We could in a general way but the specifics, including the causes, signs, symptoms, and management are so different that neither "side" understood all that the other "side" was dealing with. My mom's Vascular Dementia was another thing completely but that's not relevant here except in a broad sense to point out that there are many and varied types of dementia.
Hugs, sorry your sibling are so ignorant about the disease & all that you do on a daily basis. I hope you enjoy your Christmas, whether it is at home with the dogs or with your DH.
Their day will come.
Thank you for your thoughts. I apologize for contradicting you but I don't want to give false hope. You may be correct about Alzheimers as I have never done any research into that specific disorder. However, Alzheimers is completely different from Frontotemprol Dementia. My husband was diagnosed with FTD in 2015. There are currently no treatments to slow the progression or to cure FTD. It is different from other neurological disorders because it attacks the Frontal and Temprol lobes of the brain, its onset is usually at a younger age and its progression much faster (only 6 to 8 years from onset to death). Interestingly, DH has been on Aricept (one of the drugs the Mayo study mentions) for the last three years. I've noticed no difference in the progression of the disease.
It is important for a caretaker to understand the specific neurological disorder the person in their care is suffering from. DH went through nine hours of neuropsychological testing to assist in his diagnosis.
Hard to believe your siblings both have their head in the sand. I haven't dealt with anyone with dementia except my oldest sister having vascular dementia, but I still know that dementia isn't something a person bounces back from. It only gets worse. Hopefully some day there may be a cure, but it's a long way off.
If your siblings are going to say things they should educated themselves about it first. Are they stupid in general or just about this? I'd like to smack them upside the head for you!
Thank you for your thoughts. I apologize for contradicting you but I don't want to give false hope. You may be correct about Alzheimers as I have never done any research into that specific disorder. However, Alzheimers is completely different from Frontotemprol Dementia. My husband was diagnosed with FTD in 2015. There are currently no treatments to slow the progression or to cure FTD. It is different from other neurological disorders because it attacks the Frontal and Temprol lobes of the brain, its onset is usually at a younger age and its progression much faster (only 6 to 8 years from onset to death). Interestingly, DH has been on Aricept (one of the drugs the Mayo study mentions) for the last three years. I've noticed no difference in the progression of the disease.
It is important for a caretaker to understand the specific neurological disorder the person in their care is suffering from. DH went through nine hours of neuropsychological testing to assist in his diagnosis.
I see. Your initial post mentioned only dementia, and I don't usually visit the Caregiving Forum, so was unfamiliar with your husband's diagnosis. I am also not familiar with FTD. City-Data put your thread in the upper right corner with a small number of other topics, and that attracts members from all over the website.
I don't know if the following will help your husband, but it might, and others with any of the various forms of FTD or who are blood relatives of them may be helped by participating in a clinical study related to this horrible disease.
Mayo Clinic lists 22 FRONTOTEMPORAL DEMENTIA clinical studies:
I am so sorry you and he are going through this. Best wishes for the new year.
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