Hi,
I am the son (age 25) of a Dementia mother (age 57). She was diagnosed frontal temporal dementia 3 years ago and it is getting out of hand. If this continues, I will go insane before the age of 30:
I had been working from home over the past 7 months, and had to deal with the following all alone:
1. if I'm not within her sight, she starts crying saying there is no one at home (I am just working in a room). The nature of my work is very demanding, I usually finish work around 7pm, recently working till midnight due to tight deadlines. I really don't have the time to just sit by her side every few minutes to keep her accompany.
2. She wakes up earlier than every one else at home. Almost every morning, the first expression on her face is teary eyes - probably crying every morning out of loneliness.
3. She will cry at least 3 times a day, some times teary eyes, some times sobbing, with 2 possible reasons:
a) no apparent reason, just cry
b) the resentful father lose his temper over her.
He can literally shout/raise his tone on her, over petty little things such as "wasting" energy to boil water without using it. I have absolutely gave up educating him. Every time I tried to advise him in a gentle manner, he shoves me off. I lost hope towards him to the extent that I think he has some form of mental disabilities too: zero empathy; 60 years of age, but behaves like 6.
At times I went head on in a verbal fight with my dad for him shouting at mom. In the end of the day, he will never change anyway, and it will put me in a depressed state - I had to stop all my work because I could not focus at all thinking about it.
I'm trying to stop this because I achieve nothing but hurt myself. I just say some harsh, but truth words at him (eg: you are hopeless / you never learn) and pull mom out from the situation.
4. Even without triggers, she will say she hasn't eaten anything AT LEAST 3 times between lunch and dinner, happens every day. We deliberately keep a portion of her lunch to deal with this, such that we split her lunch portion into 3 "meals" to deal with this. However, very often this is not sufficient, she could say say she is hungry 4 or 5 times in the afternoon, and we simply don't have, and can't keep that much food from her lunch.
5. Dealing with her siblings (my aunt and etc). None of them received full education, mostly school dropouts. All of them are blaming me (and my dad) on her current situation, insisting us to get her cured by consulting a specialist. They totally disregard our explanation that there is no cure to alzheimer's disease, they are all in denial of the situation. At one point I don't think I want to meet them anymore, I rather cut all connections with them.
This is not possible either because my mom always mention of her mom (my grandmother) who is still alive, and also one of them who blames me for the situation.
I tried many solutions:
1. Sending her to a daycare for alzheimer activities/interations - This didn't work at all because she is only in her 50s, and everyone there are in their 70s at least. She will cry on the way to the centre, before even arriving. Absolutely refusing to enter the daycare.
2. Hiring a personal caretaker - This is not an option given I am a young graduate just started working, it is simply unaffordable.
3. Speaking to a friend, those with no knowledge of the disease will give advice that are not helpful at all.
4. Convincing my dad to consult a counsellor. He never accept it, probably due to pride, he thinks only crazy people need their help.
5. I have a brother living with us. He does help out a bit, but he is not actively managing the situation, it is usually me that manages everything immediately when something breaks out.
The symptoms I noticed in myself:
-I became so paranoid that I react to every little sounds at home, sensing a trouble (Alzheimer mom) approaching.
-I can identify who is sneezing - is it just a cold, or mom is crying.
-I can hear footsteps, who is approaching / leaving, from / to which direction.
-I respond to little creaks from the door, worrying if it is mom approaching. Even with the door shut, I look at the gap underneath identifying shadows. If it is present, mom is approaching.
-I am paranoid hearing sounds from downstairs. Unsure if it is just sound from the TV, or dad is raising his voice at mom which I need to stop it immediately.
-I start to rant about the situation, or hold grudges (not infront of mom). I am even gathering statistics of the frequency and severity of her cries, I don't know for what reason, maybe for my own statistical analysis in the distant future.
If all the above symptoms persists, I genuinely think I will go insane before the age of 30.
The stress level from work is very insignificant compared to stress from home situations, this is how bad the situation is.
The only time I can loosen / relax is either when dad brings her out, or I am out alone. Shouldn't home be a place where I can relax and loosen up?
The only contingency / last resort I have, and will probably need to do it within one or two years, is to send her to a permanent carehome, at a very high cost. If I do that, she won't be happy and will exponentially worsen her condition, maybe even shorten her life expectancy. But If I don't do that, I might even lose my sanity totally, going from a professional to an insane young man in some hospital for insanity.
Also dealing with negative publicity - I am 100% sure her siblings (my aunt) will all condemn me for my decision given they have 0 knowledge and doesn't want to get educated. If that happens I will officially cut family ties with them.
What should I do? I can't just runaway from home and abandon the situation. I still love my dad and don't want him to die earlier than mom.
p/s: I am currently based in Malaysia
I am the son (age 25) of a Dementia mother (age 57). She was diagnosed frontal temporal dementia 3 years ago and it is getting out of hand. If this continues, I will go insane before the age of 30:
I had been working from home over the past 7 months, and had to deal with the following all alone:
1. if I'm not within her sight, she starts crying saying there is no one at home (I am just working in a room). The nature of my work is very demanding, I usually finish work around 7pm, recently working till midnight due to tight deadlines. I really don't have the time to just sit by her side every few minutes to keep her accompany.
2. She wakes up earlier than every one else at home. Almost every morning, the first expression on her face is teary eyes - probably crying every morning out of loneliness.
3. She will cry at least 3 times a day, some times teary eyes, some times sobbing, with 2 possible reasons:
a) no apparent reason, just cry
b) the resentful father lose his temper over her.
He can literally shout/raise his tone on her, over petty little things such as "wasting" energy to boil water without using it. I have absolutely gave up educating him. Every time I tried to advise him in a gentle manner, he shoves me off. I lost hope towards him to the extent that I think he has some form of mental disabilities too: zero empathy; 60 years of age, but behaves like 6.
At times I went head on in a verbal fight with my dad for him shouting at mom. In the end of the day, he will never change anyway, and it will put me in a depressed state - I had to stop all my work because I could not focus at all thinking about it.
I'm trying to stop this because I achieve nothing but hurt myself. I just say some harsh, but truth words at him (eg: you are hopeless / you never learn) and pull mom out from the situation.
4. Even without triggers, she will say she hasn't eaten anything AT LEAST 3 times between lunch and dinner, happens every day. We deliberately keep a portion of her lunch to deal with this, such that we split her lunch portion into 3 "meals" to deal with this. However, very often this is not sufficient, she could say say she is hungry 4 or 5 times in the afternoon, and we simply don't have, and can't keep that much food from her lunch.
5. Dealing with her siblings (my aunt and etc). None of them received full education, mostly school dropouts. All of them are blaming me (and my dad) on her current situation, insisting us to get her cured by consulting a specialist. They totally disregard our explanation that there is no cure to alzheimer's disease, they are all in denial of the situation. At one point I don't think I want to meet them anymore, I rather cut all connections with them.
This is not possible either because my mom always mention of her mom (my grandmother) who is still alive, and also one of them who blames me for the situation.
I tried many solutions:
1. Sending her to a daycare for alzheimer activities/interations - This didn't work at all because she is only in her 50s, and everyone there are in their 70s at least. She will cry on the way to the centre, before even arriving. Absolutely refusing to enter the daycare.
2. Hiring a personal caretaker - This is not an option given I am a young graduate just started working, it is simply unaffordable.
3. Speaking to a friend, those with no knowledge of the disease will give advice that are not helpful at all.
4. Convincing my dad to consult a counsellor. He never accept it, probably due to pride, he thinks only crazy people need their help.
5. I have a brother living with us. He does help out a bit, but he is not actively managing the situation, it is usually me that manages everything immediately when something breaks out.
The symptoms I noticed in myself:
-I became so paranoid that I react to every little sounds at home, sensing a trouble (Alzheimer mom) approaching.
-I can identify who is sneezing - is it just a cold, or mom is crying.
-I can hear footsteps, who is approaching / leaving, from / to which direction.
-I respond to little creaks from the door, worrying if it is mom approaching. Even with the door shut, I look at the gap underneath identifying shadows. If it is present, mom is approaching.
-I am paranoid hearing sounds from downstairs. Unsure if it is just sound from the TV, or dad is raising his voice at mom which I need to stop it immediately.
-I start to rant about the situation, or hold grudges (not infront of mom). I am even gathering statistics of the frequency and severity of her cries, I don't know for what reason, maybe for my own statistical analysis in the distant future.
If all the above symptoms persists, I genuinely think I will go insane before the age of 30.
The stress level from work is very insignificant compared to stress from home situations, this is how bad the situation is.
The only time I can loosen / relax is either when dad brings her out, or I am out alone. Shouldn't home be a place where I can relax and loosen up?
The only contingency / last resort I have, and will probably need to do it within one or two years, is to send her to a permanent carehome, at a very high cost. If I do that, she won't be happy and will exponentially worsen her condition, maybe even shorten her life expectancy. But If I don't do that, I might even lose my sanity totally, going from a professional to an insane young man in some hospital for insanity.
Also dealing with negative publicity - I am 100% sure her siblings (my aunt) will all condemn me for my decision given they have 0 knowledge and doesn't want to get educated. If that happens I will officially cut family ties with them.
What should I do? I can't just runaway from home and abandon the situation. I still love my dad and don't want him to die earlier than mom.
p/s: I am currently based in Malaysia
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