If you have experience with Alzheimer’s/dementia…

[Anonymous]

Are there things you would recommend doing for or with a parent *before* the dementia becomes an issue? My father is the youngest of four, and his siblings all have dementia. Their mother had dementia, and one of my cousins has a form of early-onset dementia that began in young adulthood. Of course we’re praying Dad will be spared, but the genetics are strong. It occurred to me tonight that this at least means an opportunity to plan ahead, just in case. Given the wealth of hard experience among this group, I wondered: is there anything you wish you could have done if you’d been able to know what was coming?

[Anonymous]

Yes yes yes. Please read the Alzheimer's Antidote by Amy Berger. It's a terrible title and somewhat misleading about the actual content of the book, but it's based on a solid foundation of research about nutritional and lifestyle elements that a person can control in order to either stave off or ameliorate cognitive decline. A lot of it has to do with insulin resistance, glucose metabolism in the brain. Also Google "diabetes of the brain" or "Type 3 diabetes"...lots of legitimate research on the idea of dementia as a metabolic disease.

I lost my mom to dementia when she was only 73. I'm absolutely terrified of it.

[Anonymous]

My suggestions would be to make sure that you have updated POA and medical POA. Make sure beneficiaries are up-to-date on all of his accounts. Make sure you know what bills will need to be paid and have a way of paying those. Make sure he has a will. Maybe take the documents to his bank and make sure that they will honor them. Set up autopay on as many accounts as you can. Make sure that account is funded. My dad did bounce a few transactions because he forgot to move money from one account to another at the beginning of the month.

My dad's dementia either was a really fast on-set or went unnoticed for a really long time. With in a month he went from living on his own and paying his bills and driving, to being hospitalized and needing to move to an assisted living facility.

Luckily, he was well organized and had provided me with everything I needed to step in and take over his financial affairs. But even with all of the right documents it was overwhelming. Lots of trips to the notary.

I used a service called Owl Be There to help me find a place for him to go after rehab when we realized he was unable to live on his own. His original wishes were to remain at home, but I was not in any position to navigate that process from another state. So, maybe have honest conversations about what his wishes are and how you can try to meet them, but it might not be possible. (I have told my daughters that they can do anything they want with me, if I get to that point). Luckily, he had the means to pay for assisted living and then a move to memory care.

It is a horrible disease. I wasn't prepared.

[Anonymous]

Anonymous wrote:Yes yes yes. Please read the Alzheimer's Antidote by Amy Berger. It's a terrible title and somewhat misleading about the actual content of the book, but it's based on a solid foundation of research about nutritional and lifestyle elements that a person can control in order to either stave off or ameliorate cognitive decline. A lot of it has to do with insulin resistance, glucose metabolism in the brain. Also Google "diabetes of the brain" or "Type 3 diabetes"...lots of legitimate research on the idea of dementia as a metabolic disease.

I lost my mom to dementia when she was only 73. I'm absolutely terrified of it.

I will definitely look into this, thank you! Interestingly, Dad was diagnosed with diabetes a couple of years ago despite being in great health, always slightly underweight, with a healthy diet and lots of physical activity for someone his age. Fingers crossed that treating the diabetes might end up having a protective effect on the brain as well.

[Anonymous]

Anonymous wrote:My suggestions would be to make sure that you have updated POA and medical POA. Make sure beneficiaries are up-to-date on all of his accounts. Make sure you know what bills will need to be paid and have a way of paying those. Make sure he has a will. Maybe take the documents to his bank and make sure that they will honor them. Set up autopay on as many accounts as you can. Make sure that account is funded. My dad did bounce a few transactions because he forgot to move money from one account to another at the beginning of the month.

My dad's dementia either was a really fast on-set or went unnoticed for a really long time. With in a month he went from living on his own and paying his bills and driving, to being hospitalized and needing to move to an assisted living facility.

Luckily, he was well organized and had provided me with everything I needed to step in and take over his financial affairs. But even with all of the right documents it was overwhelming. Lots of trips to the notary.

I used a service called Owl Be There to help me find a place for him to go after rehab when we realized he was unable to live on his own. His original wishes were to remain at home, but I was not in any position to navigate that process from another state. So, maybe have honest conversations about what his wishes are and how you can try to meet them, but it might not be possible. (I have told my daughters that they can do anything they want with me, if I get to that point). Luckily, he had the means to pay for assisted living and then a move to memory care.

It is a horrible disease. I wasn't prepared.

All the practical details are so overwhelming, and I can see how it will help to be on top of those. And some of these I wouldn’t have thought of, like autopsying bills. My parents still send checks to pay bills, so it’s probably time to drag them into the online-processing age. Luckily my stepmother is extremely competent and in good health, but she’s also in her mid-70s. Even if she does end up as the person in charge, it will help to remember how much weight she is quietly bearing from day to day. (They are still in their home of 40+ years and in fact are still sorting through all the “stuff” from when my grandparents died a few years back, so even the nonessentials will be a big job.)

I feel you, PP, on being in a different state. It makes everything so much harder both practically and emotionally. I never knew that the disease could take such a sudden turn. That must have been so rough for you, to have it come up out of seemingly nowhere. There are definite downsides to having advance warning — everyone (including him) notices and analyzes his every forgotten word or other mistake — but overall I’d much rather have time to prepare ourselves.

[Anonymous]

Oh gosh, I could write a horrible book about this. OP one question though, do you live close or far away? My answers change depending on that.

[Anonymous]

Yes to getting legal and financial ducks in a row. My Mom was the one with dementia, and she didn’t take care of any of that stuff. My Dad did all the right things (POA, will, etc) but we were still caught off guard when he needed hospice.

Make sure you know all their accounts. Set up electronic accounts so you know the log in and password. See if you can be added as an authorized person on all accounts. Check that you know all their life insurance, LTC, STD, health insurance, etc. Make you have the title for their cars (or know where they are).

Even with my Dad being somewhat prepared, it’s still been a huge PITA trying to figure everything out.

Also get a DNR and have a copy posted on their refrigerator and an electronic copy you can send to medical staff if necessary. It seems cruel to do a DNR when your parent still seems so spry. But do some research on what happens when you get CPR. It involves broken ribs and most won’t return to previous quality of life.

And if it hasn’t happened yet, move them closer to you. My parents moved 15 mins away and it was still a pain when they needed me several times in one day.

[Anonymous]

Get them organized and make them keep items in functional places. Make sure if you restock not to move anything. Keep everything in the same place, including food, furniture, etc. Make special baskets around the house for very important items like wallet, keys, glasses, etc so they get in habit of putting them away. If they don’t use it then try another way. Find something that they can get used to using regularly. Put a bin in every room with commonly misplaced items, pen, pencil, scissors, paper, note cards, etc. So they don’t have to try to remember where everything is. Keep in same location si they get used to it.

[Anonymous]

1) Proximity is the most important. It’s so much harder for you to help or track how he’s progressing in the illness if you’re far away
2) get organized. You need to know all about his finances and healthcare so you can manage it all once he’s no longer able to.
3) clean out the house (no clutter or extraneous items, go through all paperwork and organize it/shred what’s not needed), make sure his living environment is set up well for him to manage basic everyday tasks independently for as long as possible. W this I’m mostly talking simple tasks. For example, my relative w dementia needs to always have her toothbrush/paste in the same place right next to the sink or she won’t brush her teeth. Easy to do but if you think about all the little tasks like this that you do every day it adds up. Have “systems” in place that streamline things: auto pay for bills, etc
4) have him write down things he wants to remember and or things he’d like his children/grandchildren to know about him…his life stories and special memories. Also YOU write down your favorite stories and memories of him as well. For me, once my relative had dementia, caring for her became so consuming that it was increasingly hard even for me (who didn’t have memory loss issues) to remember what she was like before. Make voice recordings of him talking so you can remember his voice. Take pictures and videos. Have him write letters to anyone he wants to communicate w (friends, relatives) that you could send them at some point once your dad is no longer able to communicate w people. I wish so much we had done this but we had no idea that our relative was likely to get dementia.
5) make new memories together now while you can. Go on trips, go on fun outings, talk about relatives, talk about his childhood memories and your own. Share good meals together. Watch your favorite movies and listen to your favorite music together.

I sincerely hope your dad doesn’t get dementia and that you don’t need any of this advice. But it’s good you’re preparing as best you can just in case.

[Anonymous]

Anonymous wrote:1) Proximity is the most important. It’s so much harder for you to help or track how he’s progressing in the illness if you’re far away
2) get organized. You need to know all about his finances and healthcare so you can manage it all once he’s no longer able to.
3) clean out the house (no clutter or extraneous items, go through all paperwork and organize it/shred what’s not needed), make sure his living environment is set up well for him to manage basic everyday tasks independently for as long as possible. W this I’m mostly talking simple tasks. For example, my relative w dementia needs to always have her toothbrush/paste in the same place right next to the sink or she won’t brush her teeth. Easy to do but if you think about all the little tasks like this that you do every day it adds up. Have “systems” in place that streamline things: auto pay for bills, etc
4) have him write down things he wants to remember and or things he’d like his children/grandchildren to know about him…his life stories and special memories. Also YOU write down your favorite stories and memories of him as well. For me, once my relative had dementia, caring for her became so consuming that it was increasingly hard even for me (who didn’t have memory loss issues) to remember what she was like before. Make voice recordings of him talking so you can remember his voice. Take pictures and videos. Have him write letters to anyone he wants to communicate w (friends, relatives) that you could send them at some point once your dad is no longer able to communicate w people. I wish so much we had done this but we had no idea that our relative was likely to get dementia.
5) make new memories together now while you can. Go on trips, go on fun outings, talk about relatives, talk about his childhood memories and your own. Share good meals together. Watch your favorite movies and listen to your favorite music together.

I sincerely hope your dad doesn’t get dementia and that you don’t need any of this advice. But it’s good you’re preparing as best you can just in case.

Oh and very important also: make sure you have all the legal stuff (POA and MPOA, his will, etc) worked out in advance. get to know his doctors and let them know your concerns so they know to watch for any changes too. Get to know some social workers who help w adults w dementia in your area, see if there’s a senior center for dementia support issues nearby and what activities they provide. Ask your dad what his wishes are for end of life stuff and how he’d like his memorial service to be. Tough conversations to have of course but necessary.

Good luck.

[Anonymous]

Anonymous wrote:

Anonymous wrote:1) Proximity is the most important. It’s so much harder for you to help or track how he’s progressing in the illness if you’re far away
2) get organized. You need to know all about his finances and healthcare so you can manage it all once he’s no longer able to.
3) clean out the house (no clutter or extraneous items, go through all paperwork and organize it/shred what’s not needed), make sure his living environment is set up well for him to manage basic everyday tasks independently for as long as possible. W this I’m mostly talking simple tasks. For example, my relative w dementia needs to always have her toothbrush/paste in the same place right next to the sink or she won’t brush her teeth. Easy to do but if you think about all the little tasks like this that you do every day it adds up. Have “systems” in place that streamline things: auto pay for bills, etc
4) have him write down things he wants to remember and or things he’d like his children/grandchildren to know about him…his life stories and special memories. Also YOU write down your favorite stories and memories of him as well. For me, once my relative had dementia, caring for her became so consuming that it was increasingly hard even for me (who didn’t have memory loss issues) to remember what she was like before. Make voice recordings of him talking so you can remember his voice. Take pictures and videos. Have him write letters to anyone he wants to communicate w (friends, relatives) that you could send them at some point once your dad is no longer able to communicate w people. I wish so much we had done this but we had no idea that our relative was likely to get dementia.
5) make new memories together now while you can. Go on trips, go on fun outings, talk about relatives, talk about his childhood memories and your own. Share good meals together. Watch your favorite movies and listen to your favorite music together.

I sincerely hope your dad doesn’t get dementia and that you don’t need any of this advice. But it’s good you’re preparing as best you can just in case.

Oh and very important also: make sure you have all the legal stuff (POA and MPOA, his will, etc) worked out in advance. get to know his doctors and let them know your concerns so they know to watch for any changes too. Get to know some social workers who help w adults w dementia in your area, see if there’s a senior center for dementia support issues nearby and what activities they provide. Ask your dad what his wishes are for end of life stuff and how he’d like his memorial service to be. Tough conversations to have of course but necessary.

Good luck.

One downfall to proximity that I have lived-it's great the first few years when you want to be there as much as you can and you still feel some warmth. If the person descending into a firy ball of anger and abuse and you feel it's time for memory care, the siblings from afar may downplay, gaslight, guilt trip and be unable to comprehend why you can't just check in as the person ages in place with sometimes unreliable caregivers. It can really blow up a family and lead to permanent breaks. I pray this will not be your situation, but when you have enough years of a parent being abusive the love can erode. When the parent is properly placed it's easier to prep yourself, put on a smile, use strategies and then leave. It's a lot harder when you are dealing with caregiver no show issues and an array of other things.

Sorry to be a Debbie Downer. I have friends who's parents became even sweeter and more childlike with dementia so it was much easier to want to be there as much as possible. If that isn't how people tend to age in your family I would be prepared and get siblings on board with plan of action.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:1) Proximity is the most important. It’s so much harder for you to help or track how he’s progressing in the illness if you’re far away
2) get organized. You need to know all about his finances and healthcare so you can manage it all once he’s no longer able to.
3) clean out the house (no clutter or extraneous items, go through all paperwork and organize it/shred what’s not needed), make sure his living environment is set up well for him to manage basic everyday tasks independently for as long as possible. W this I’m mostly talking simple tasks. For example, my relative w dementia needs to always have her toothbrush/paste in the same place right next to the sink or she won’t brush her teeth. Easy to do but if you think about all the little tasks like this that you do every day it adds up. Have “systems” in place that streamline things: auto pay for bills, etc
4) have him write down things he wants to remember and or things he’d like his children/grandchildren to know about him…his life stories and special memories. Also YOU write down your favorite stories and memories of him as well. For me, once my relative had dementia, caring for her became so consuming that it was increasingly hard even for me (who didn’t have memory loss issues) to remember what she was like before. Make voice recordings of him talking so you can remember his voice. Take pictures and videos. Have him write letters to anyone he wants to communicate w (friends, relatives) that you could send them at some point once your dad is no longer able to communicate w people. I wish so much we had done this but we had no idea that our relative was likely to get dementia.
5) make new memories together now while you can. Go on trips, go on fun outings, talk about relatives, talk about his childhood memories and your own. Share good meals together. Watch your favorite movies and listen to your favorite music together.

I sincerely hope your dad doesn’t get dementia and that you don’t need any of this advice. But it’s good you’re preparing as best you can just in case.

Oh and very important also: make sure you have all the legal stuff (POA and MPOA, his will, etc) worked out in advance. get to know his doctors and let them know your concerns so they know to watch for any changes too. Get to know some social workers who help w adults w dementia in your area, see if there’s a senior center for dementia support issues nearby and what activities they provide. Ask your dad what his wishes are for end of life stuff and how he’d like his memorial service to be. Tough conversations to have of course but necessary.

Good luck.

One downfall to proximity that I have lived-it's great the first few years when you want to be there as much as you can and you still feel some warmth. If the person descending into a firy ball of anger and abuse and you feel it's time for memory care, the siblings from afar may downplay, gaslight, guilt trip and be unable to comprehend why you can't just check in as the person ages in place with sometimes unreliable caregivers. It can really blow up a family and lead to permanent breaks. I pray this will not be your situation, but when you have enough years of a parent being abusive the love can erode. .

^ This. I thought I had a very strong relationship with my mother, but her personality changed dramatically as she developed dementia. She became bitter, paranoid and mean (not to mention racist, etc.) It was shocking and incredibly upsetting to see this person who looked like my mother turn into a terrible stranger. She also became physically disabled and needed help with bathing and so on, and was extremely abusive to her aides, meaning aides frequently quit. I lived nearby and brother on the west coast, so although he was supportive and visited every few months, the day-to-day burdens all fell on me. It was exhausting and depressing.

She died recently and I am still struggling with how to process my feeling. I miss the person she used to be. I don't miss the person she became (and the person she once was would have loathed the person she became). It's tough when people who knew her years ago but had not seen her recently come up to me and say, "Oh, your mother was so wonderful." Part of me is touched and grateful. Part of me wants to scream. It's really tough. I want to remember her as she used to be, and reclaim all those warm and happy feelings, but I also can't/don't want to repress the part of me that feels hurt and angry.

Hoping that time will help...

[Anonymous]

One addendum to online accounts with logins and passwords - also get your cell phone and email address into the lists of authorized numbers and addresses for notifications for each account. For example, if you need to change a password, you may need to provide a phone number to receive a confirmation code and you want to be able to send it to your own phone.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:1) Proximity is the most important. It’s so much harder for you to help or track how he’s progressing in the illness if you’re far away
2) get organized. You need to know all about his finances and healthcare so you can manage it all once he’s no longer able to.
3) clean out the house (no clutter or extraneous items, go through all paperwork and organize it/shred what’s not needed), make sure his living environment is set up well for him to manage basic everyday tasks independently for as long as possible. W this I’m mostly talking simple tasks. For example, my relative w dementia needs to always have her toothbrush/paste in the same place right next to the sink or she won’t brush her teeth. Easy to do but if you think about all the little tasks like this that you do every day it adds up. Have “systems” in place that streamline things: auto pay for bills, etc
4) have him write down things he wants to remember and or things he’d like his children/grandchildren to know about him…his life stories and special memories. Also YOU write down your favorite stories and memories of him as well. For me, once my relative had dementia, caring for her became so consuming that it was increasingly hard even for me (who didn’t have memory loss issues) to remember what she was like before. Make voice recordings of him talking so you can remember his voice. Take pictures and videos. Have him write letters to anyone he wants to communicate w (friends, relatives) that you could send them at some point once your dad is no longer able to communicate w people. I wish so much we had done this but we had no idea that our relative was likely to get dementia.
5) make new memories together now while you can. Go on trips, go on fun outings, talk about relatives, talk about his childhood memories and your own. Share good meals together. Watch your favorite movies and listen to your favorite music together.

I sincerely hope your dad doesn’t get dementia and that you don’t need any of this advice. But it’s good you’re preparing as best you can just in case.

Oh and very important also: make sure you have all the legal stuff (POA and MPOA, his will, etc) worked out in advance. get to know his doctors and let them know your concerns so they know to watch for any changes too. Get to know some social workers who help w adults w dementia in your area, see if there’s a senior center for dementia support issues nearby and what activities they provide. Ask your dad what his wishes are for end of life stuff and how he’d like his memorial service to be. Tough conversations to have of course but necessary.

Good luck.

One downfall to proximity that I have lived-it's great the first few years when you want to be there as much as you can and you still feel some warmth. If the person descending into a firy ball of anger and abuse and you feel it's time for memory care, the siblings from afar may downplay, gaslight, guilt trip and be unable to comprehend why you can't just check in as the person ages in place with sometimes unreliable caregivers. It can really blow up a family and lead to permanent breaks. I pray this will not be your situation, but when you have enough years of a parent being abusive the love can erode. .

^ This. I thought I had a very strong relationship with my mother, but her personality changed dramatically as she developed dementia. She became bitter, paranoid and mean (not to mention racist, etc.) It was shocking and incredibly upsetting to see this person who looked like my mother turn into a terrible stranger. She also became physically disabled and needed help with bathing and so on, and was extremely abusive to her aides, meaning aides frequently quit. I lived nearby and brother on the west coast, so although he was supportive and visited every few months, the day-to-day burdens all fell on me. It was exhausting and depressing.

She died recently and I am still struggling with how to process my feeling. I miss the person she used to be. I don't miss the person she became (and the person she once was would have loathed the person she became). It's tough when people who knew her years ago but had not seen her recently come up to me and say, "Oh, your mother was so wonderful." Part of me is touched and grateful. Part of me wants to scream. It's really tough. I want to remember her as she used to be, and reclaim all those warm and happy feelings, but I also can't/don't want to repress the part of me that feels hurt and angry.

Hoping that time will help...

Along these lines...OP what did Alzheimers look like for the relatives? If there is a good chance he will go the paranoid abusive route, have a plan. If everyone except you is adamantly opposed to a memory care facility and proper meds, then they need to be ready to step of when staff quits and aging in place turns into a pipe dream.

Also, while most people know those with dementia can be paranoid and make accusations against loved ones, it is also not that uncommon for family to take advantage. So when mom started making accusations about me the dysfunction exploded because I already wasn't that close with my sister. A friend of mine was close with her sister and things still exploded at first. You can prove you aren't taking money from accounts easily. My friend was accused of never visiting so she turned to email and CCed every family member every time she made plans with mom. I was accused of not being nice to mom when I got therapy and set boundaries. It is very hard to to explain to an already toxic sibling that it wasn't that I aburptly ended a visit while she was midsentence talking calmly. I left because she was screaming and completely irrational and I was sick to my stomach. The problem is early on they can turn it on for others and seem somewhat normal so it's easy to believe them and we all know family members can be abusive. It gets exhausting defending yourself, dragging in witnesses, etc. After enough years where most of her crazy came out on me and anyone not close to her who saw it just ran away, I got fed up being gaslit and having it implied I was the nut. My sister could either go along with hiring someone to check on her and manage services or she could come to town and do it herself.

Now my relationship is mostly calling now and then and visiting very occasionally with an excuse to leave and when she tantrums I simply don't call for longer. I totally get why there are elders nobody visits because I am not sure how much longer I can do this even reduced amount. In my case mom did turn from sweet to abusive. She had these tendencies, but there were enough buffers in her life and she had enough decency she could keep it in check usually. I have been there over the years as all ability to be a decent person to me has eroded, yet she can still put on a face for others who don't visit often and my sister.

So, I guess all this is to say be prepared for all the paranoia and accusations hurled at you to take their toll. Ideally find a lovely memory care, but if not, be ready to turn it all over to a service if you reach your limit of even managing things. I want to vomit when I watch these videos brainwashing people into putting up with years of awful behavior from someone with dementia. I bought into it for years and it took it's toll especially when it was too convenient for my sister to go along with mom and it was not some massive personality change, just a worsening.

[Anonymous]

Sorry did NOT turn from sweet to abusive...just worsened