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As the sole caregiver for a father with dementia I can tell you it's a nightmare. If you have children please, please plan for late life care. And if you're go

As the sole caregiver for a father with dementia I can tell you it's a nightmare. If you have children please, please plan for late life care. And if you're going to be caring for either of your parents start planning and build a support network. By the time I knew I needed help I was drowning. Learn how to ask for help. I thought I was a relatively progressive 50 year old man, but it turns out help is a 4-letter word.

d4mi3n 1y ago
You have my condolences. I helped my wife care for her late father with Lewy body dementia. I think many people recognize they may need to care for the people that raised them at some point, but the realities of the costs--both financially and emotionally--are rarely discussed. @lemonberry feel free to reach out if you need a friendly ear, my email is in my profile. On a personal note to anyone in this situation: Do not go it alone. Being a caregiver is hard, but being a caregiver for someone with serious memory issues is brutal and requires 24/7 monitoring. Your loved one will not always cooperate. They may change into someone who does not resemble the person you knew. Many states require such persons to be homed somewhere with a 24/7 nursing staff. Plan accordingly.
saltcured 1y ago
My sympathies. As hard as it is, supporting family members also need to learn to prioritize taking care of themselves and avoiding a spiral towards burnout. With dementia, there is often a time when the patient needs a more controlled environment with 24x7 supervision. Dementia sleep schedules and behaviors fall apart and are not really compatible with a family caregiver's own health needs. Depending on the dementia case, risky behaviors may emerge at night, and having observant caregivers awake 24x7 may be very important. The financial picture for this is quite difficult in the US. Normally this requires a care facility at some point, as it is impossibly expensive to bring sufficient dementia care via visiting professionals. To safely handle dementia with "sundowning" and wandering behaviors, you usually need a facility that has about a dozen residents or more. Then, budgets allow for multiple onsite staff and overnight wakeful staff. This can bring more distinct staff roles too, e.g. cooking and housekeeping versus care. Even this may be overwhelmingly costly, to the point where the dementia ends up depleting the estate and then shifting to some kind of government support. For family or trustees managing this process, it is full of difficult decisions regarding budget and care tradeoffs. For example, do you splurge on "nicer" facilities or other caregiver factors early on, or try to reserve more funds for the inevitable crises? Dementia can be a drawn-out process, where care needs expand to a crescendo before collapsing back to hospice care, which may be more like other terminal illnesses.
- lemonberry 1y ago
  Thank you. All of this is absolutely true. Thankfully, there has been no risky behavior. However, as soon as that is the case I have some pretty big decisions to make.
ashleyn 1y ago
One major reason I'm working extra years despite being FI is so I have money to provide for memory care for my parents if they end up needing that. They have downright nothing to their name and memory care can easily run into half a million dollars total.
toomuchtodo 1y ago
Don't neglect yourself. Wishing you the best. https://www.caregiveraction.org/ https://www.caregiveraction.org/
- lemonberry 1y ago
  Thank you! People are always telling me about organizations that can help, but honestly, I waffle between tunnel vision and absolute overwhelm. It makes acting on suggestions very difficult.
deleted 1y ago
[deleted]
linotype 1y ago
My wife and I don’t have children, but my exit strategy is assisted suicide. I have no intention of living past my brain.
- aziaziazi 1y ago
  Willing to share if/what’s your plans? Do you live in a somewhat helping country like Swiss? I’ve a similar view for myself but my GF find it creepy and don’t want discuss it, yet. That’s embarrassing, I don’t want to cause grief by a surprise disparition. Practically speaking there’s NGOs that can help and even send kits after a (long) checkup. Inert gas asphyxia seems to be a classic as it’s fast, painless and quite cheap/easy.
  - linotype 1y ago
    I haven’t made concrete plans yet as that should be decades away (though maybe I should anyway) and the laws change all the time depending on the jurisdiction. I live in a country that’s fairly lax gun wise so I could always take care of it myself.
- wonderwonder 1y ago
  Yeah, as morbid as it sounds, I have no intention of my wife and children having to watch me degrade or to suffer that indignity myself. My plan is of course to never suffer from this disease but if I do, as soon as I know its spiraling I would check out. Would probably do something like attempting to climb a very tall mountain in the winter without oxygen. At least give myself a goal to distract myself as I head towards the inevitable. If I make it to the top I'll just take a long nap. That or just a massive Heroin overdose where a security guard will find me in the morning so my family doesn't have to deal with that. Big apologies to the security guard ahead of time. While I have lots of guns, the thought of putting a bullet in my head is not something I could follow through on, would not want my family to have to identify me looking like that.
  - bravesoul2 1y ago
    Suicide as a logical choice rather than a desperate one is so rarely talked about. It is just interesting to see views on it. For a "happy" person it sort of goes against the grain to do it but I see the reasoning. Add in the confusion of dementia at the time the decision has to be made. I'm not sure what to make of it!
KolibriFly 1y ago
Your advice about planning ahead is gold.... by the time the crisis point comes, you're usually too exhausted to build that support system from scratch

d4mi3n 1y ago

You have my condolences. I helped my wife care for her late father with Lewy body dementia. I think many people recognize they may need to care for the people that raised them at some point, but the realities of the costs--both financially and emotionally--are rarely discussed. @lemonberry feel free to reach out if you need a friendly ear, my email is in my profile. On a personal note to anyone in this situation: Do not go it alone. Being a caregiver is hard, but being a caregiver for someone with serious memory issues is brutal and requires 24/7 monitoring. Your loved one will not always cooperate. They may change into someone who does not resemble the person you knew. Many states require such persons to be homed somewhere with a 24/7 nursing staff. Plan accordingly.

saltcured 1y ago

My sympathies. As hard as it is, supporting family members also need to learn to prioritize taking care of themselves and avoiding a spiral towards burnout. With dementia, there is often a time when the patient needs a more controlled environment with 24x7 supervision. Dementia sleep schedules and behaviors fall apart and are not really compatible with a family caregiver's own health needs. Depending on the dementia case, risky behaviors may emerge at night, and having observant caregivers awake 24x7 may be very important. The financial picture for this is quite difficult in the US. Normally this requires a care facility at some point, as it is impossibly expensive to bring sufficient dementia care via visiting professionals. To safely handle dementia with "sundowning" and wandering behaviors, you usually need a facility that has about a dozen residents or more. Then, budgets allow for multiple onsite staff and overnight wakeful staff. This can bring more distinct staff roles too, e.g. cooking and housekeeping versus care. Even this may be overwhelmingly costly, to the point where the dementia ends up depleting the estate and then shifting to some kind of government support. For family or trustees managing this process, it is full of difficult decisions regarding budget and care tradeoffs. For example, do you splurge on "nicer" facilities or other caregiver factors early on, or try to reserve more funds for the inevitable crises? Dementia can be a drawn-out process, where care needs expand to a crescendo before collapsing back to hospice care, which may be more like other terminal illnesses.

lemonberry 1y ago
Thank you. All of this is absolutely true. Thankfully, there has been no risky behavior. However, as soon as that is the case I have some pretty big decisions to make.

ashleyn 1y ago

One major reason I'm working extra years despite being FI is so I have money to provide for memory care for my parents if they end up needing that. They have downright nothing to their name and memory care can easily run into half a million dollars total.

toomuchtodo 1y ago

Don't neglect yourself. Wishing you the best. https://www.caregiveraction.org/ https://www.caregiveraction.org/

lemonberry 1y ago
Thank you! People are always telling me about organizations that can help, but honestly, I waffle between tunnel vision and absolute overwhelm. It makes acting on suggestions very difficult.

deleted 1y ago

[deleted]

linotype 1y ago

My wife and I don’t have children, but my exit strategy is assisted suicide. I have no intention of living past my brain.

aziaziazi 1y ago
Willing to share if/what’s your plans? Do you live in a somewhat helping country like Swiss? I’ve a similar view for myself but my GF find it creepy and don’t want discuss it, yet. That’s embarrassing, I don’t want to cause grief by a surprise disparition. Practically speaking there’s NGOs that can help and even send kits after a (long) checkup. Inert gas asphyxia seems to be a classic as it’s fast, painless and quite cheap/easy.
- linotype 1y ago
  I haven’t made concrete plans yet as that should be decades away (though maybe I should anyway) and the laws change all the time depending on the jurisdiction. I live in a country that’s fairly lax gun wise so I could always take care of it myself.
wonderwonder 1y ago
Yeah, as morbid as it sounds, I have no intention of my wife and children having to watch me degrade or to suffer that indignity myself. My plan is of course to never suffer from this disease but if I do, as soon as I know its spiraling I would check out. Would probably do something like attempting to climb a very tall mountain in the winter without oxygen. At least give myself a goal to distract myself as I head towards the inevitable. If I make it to the top I'll just take a long nap. That or just a massive Heroin overdose where a security guard will find me in the morning so my family doesn't have to deal with that. Big apologies to the security guard ahead of time. While I have lots of guns, the thought of putting a bullet in my head is not something I could follow through on, would not want my family to have to identify me looking like that.
- bravesoul2 1y ago
  Suicide as a logical choice rather than a desperate one is so rarely talked about. It is just interesting to see views on it. For a "happy" person it sort of goes against the grain to do it but I see the reasoning. Add in the confusion of dementia at the time the decision has to be made. I'm not sure what to make of it!

KolibriFly 1y ago

Your advice about planning ahead is gold.... by the time the crisis point comes, you're usually too exhausted to build that support system from scratch