I am mindful that many of us will not survive as caregivers if we don’t have support. The web offers many possible options, and it’s in our best interest to prepare.
I'm 57 and have been DPOA and in charge of my aunt's life and care since early 2020 when it was clear she had dementia and could no longer take care of herself. She lived alone and I lived 6 hours away. And, oh yeah - something called COVID happened, so getting live-in care for her was a challenge, but I eventually found someone who agreed to live with her full-time. I came down every 4 weeks to give the caregiver a 5 day break. The only other family we have/had are my parents who are in their mid-80s and very limited in how they can help. My aunt had unfortunately pushed away every one of her friends except for one.
I essentially figured everything out by myself as I went. It's a long story, but finally, after vaccines were available, it became safe to move my aunt into assisted living. Her dementia was more MCI (or at least the facility agreed to that) and after she moved to AL, she thrived. Her dementia seemed to stall, if not regress. I tried to get help from county services and the closest Alzheimers chapter but had very little success. I was paired with volunteers who never came to see my aunt. The ombudsman was useless. My aunt had little money -- enough for about 4 years without any increases or complications. She's now in Memory Care, after 2.5 decent years at AL.
I've handled everything related to her moves, her bills, her health; I order her depends, her poligrip for her dentures, any other incidentals that facilities don't cover. I say all this to reveal, at least in California, how unsupported I have felt over the years. Most people have family or friends that can take on some of the burden. I have one friend of my aunt's who can do a little bit, but I have to be careful not to ask her to do too much.
I watch documentaries and read stories of people supporting their loved ones with Alzheimers and I see similar stories of overwhelm and constant red tape navigation with the medical and insurance industries. And I get a lot of conflicting information from city and county (supposed) support services.
I tell people all that I've done and still do and they say, "You are an amazing nephew. There ought to be an organized system for figuring all that stuff out. So that overwhelmed family members don't have to reinvent the wheel each time. Maybe you can do it!"
My takeaway has been: Unless you are super wealthy and can afford to hire people for the countless jobs required to care for a family member with dementia/Alzheimer's, the deck is stacked against you finding clear, affordable, empathetic support. And even if you have money, it's still a ton of work figuring out where to turn, what red flags to look for, etc.
Sorry for rambling, I have a feeling other states might have better infrastructure of support on these matters than CA.
I'll check your 'Stack out. It does seem that having money is key to being able to even marginally care for a loved one. That's great that you found a local org to help financially. What country/state are you in? Is it an org specific to your area?
I am in upstate South Carolina. The organization I referenced is Appalachian Council of Governments. I don’t know if they are strictly limited to this area of South Carolina or if they work in other Appalachian states. I found them when I went to a fair in Greenville, SC that focused on services and products for seniors. Thankfully my mother does not have dementia, but her memory is getting somewhat worse and communicating with her is getting more challenging because it requires much repetition even with hearing aids. I get some help from family but not a lot.
I keep telling myself that it’s time to bring in help, but for some reason I keep resisting. I don’t have family members who will step in to do meaningful help, though my brother-in-law has helped some. I need to hire someone for once or twice a week in home care. My mother has some money I can spend on this and I’ve found a local organization that offers financial assistance when I do need it. It’s so hard to think about bringing a stranger into my home.
Debbie, I can certainly understand that - we could afford in-home care too, but while Dan was opposed to having a stranger in his home, I was equally opposed. I tried to do it on my own, but even with family help, I couldn't do it.
We’re in a similar situation with my mother. We’ve been talking for while, even before my father passed, that it would be good to have someone come in to help. We didn’t pursue it, possibly because we didn’t want to deal with the resistance my parents would put up. They felt, and my mother still feels, that they are doing okay and don’t want non-family to help.
Hi Teri, One suggestion I read was to say that the person was to help you. Another suggestion was to issue an ultimatum - it's either in-home or a care facility. When I tried to bring someone in, I was going to introduce her as a friend of mine - visiting me - til Dan got comfortable with her - I didn't give it enough time. In retrospect, I should have tried harder - it would have been better in the long run..
I am mindful that many of us will not survive as caregivers if we don’t have support. The web offers many possible options, and it’s in our best interest to prepare.
WOW! ANOTHER EXCELLENT POST, JANICE. YOU ARE TIRELESS! SO HELPFUL.
I'm 57 and have been DPOA and in charge of my aunt's life and care since early 2020 when it was clear she had dementia and could no longer take care of herself. She lived alone and I lived 6 hours away. And, oh yeah - something called COVID happened, so getting live-in care for her was a challenge, but I eventually found someone who agreed to live with her full-time. I came down every 4 weeks to give the caregiver a 5 day break. The only other family we have/had are my parents who are in their mid-80s and very limited in how they can help. My aunt had unfortunately pushed away every one of her friends except for one.
I essentially figured everything out by myself as I went. It's a long story, but finally, after vaccines were available, it became safe to move my aunt into assisted living. Her dementia was more MCI (or at least the facility agreed to that) and after she moved to AL, she thrived. Her dementia seemed to stall, if not regress. I tried to get help from county services and the closest Alzheimers chapter but had very little success. I was paired with volunteers who never came to see my aunt. The ombudsman was useless. My aunt had little money -- enough for about 4 years without any increases or complications. She's now in Memory Care, after 2.5 decent years at AL.
I've handled everything related to her moves, her bills, her health; I order her depends, her poligrip for her dentures, any other incidentals that facilities don't cover. I say all this to reveal, at least in California, how unsupported I have felt over the years. Most people have family or friends that can take on some of the burden. I have one friend of my aunt's who can do a little bit, but I have to be careful not to ask her to do too much.
I watch documentaries and read stories of people supporting their loved ones with Alzheimers and I see similar stories of overwhelm and constant red tape navigation with the medical and insurance industries. And I get a lot of conflicting information from city and county (supposed) support services.
I tell people all that I've done and still do and they say, "You are an amazing nephew. There ought to be an organized system for figuring all that stuff out. So that overwhelmed family members don't have to reinvent the wheel each time. Maybe you can do it!"
My takeaway has been: Unless you are super wealthy and can afford to hire people for the countless jobs required to care for a family member with dementia/Alzheimer's, the deck is stacked against you finding clear, affordable, empathetic support. And even if you have money, it's still a ton of work figuring out where to turn, what red flags to look for, etc.
Sorry for rambling, I have a feeling other states might have better infrastructure of support on these matters than CA.
Btw, if you’re interested I’m writing about my journey caregiving for my mother in a Substack called Aging in Place.
I'll check your 'Stack out. It does seem that having money is key to being able to even marginally care for a loved one. That's great that you found a local org to help financially. What country/state are you in? Is it an org specific to your area?
I am in upstate South Carolina. The organization I referenced is Appalachian Council of Governments. I don’t know if they are strictly limited to this area of South Carolina or if they work in other Appalachian states. I found them when I went to a fair in Greenville, SC that focused on services and products for seniors. Thankfully my mother does not have dementia, but her memory is getting somewhat worse and communicating with her is getting more challenging because it requires much repetition even with hearing aids. I get some help from family but not a lot.
I keep telling myself that it’s time to bring in help, but for some reason I keep resisting. I don’t have family members who will step in to do meaningful help, though my brother-in-law has helped some. I need to hire someone for once or twice a week in home care. My mother has some money I can spend on this and I’ve found a local organization that offers financial assistance when I do need it. It’s so hard to think about bringing a stranger into my home.
Debbie, I can certainly understand that - we could afford in-home care too, but while Dan was opposed to having a stranger in his home, I was equally opposed. I tried to do it on my own, but even with family help, I couldn't do it.
We’re in a similar situation with my mother. We’ve been talking for while, even before my father passed, that it would be good to have someone come in to help. We didn’t pursue it, possibly because we didn’t want to deal with the resistance my parents would put up. They felt, and my mother still feels, that they are doing okay and don’t want non-family to help.
Hi Teri, One suggestion I read was to say that the person was to help you. Another suggestion was to issue an ultimatum - it's either in-home or a care facility. When I tried to bring someone in, I was going to introduce her as a friend of mine - visiting me - til Dan got comfortable with her - I didn't give it enough time. In retrospect, I should have tried harder - it would have been better in the long run..