Alzheimer's

[Sust]

I have a family member with alzheimer's disease and my family is in the midst of prepping ourselves with devices like a personal GPS and stove monitor. Wondering if anyone has in mind any other experiences, devices, or maybe even websites with suggestions on anticipatory things to help manage this chronic neurodegenerative illness.

I found this and this so far.

Thanks in advance ATHF

 

[SociallyChallenged]

Hm, those are some neat tools I wasn't aware of. Does your family member currently live alone or with roomates/other family? A stove monitor is great, but if the person still lives alone, it doesn't do very much good. Besides the technological interventions, is the family member on medications for it (i.e. Namenda, Aricept)? Also, have you talked to the family member about it? These may seem like silly questions, but some people just dive into fixing the problem. The main things you have to do right now is make sure the person isn't alone, address your emotions and express your support for the family member, and ask the family member how they perceive the changes and what you can do to help them. My grandmother had Alzheimers and we were very close. When she was first diagnosed, I was a teenager and tried to distract myself by finding out all the info I could about Alzheimer's, interventions, effectiveness of those meds, time course, etc. What I didn't do was sit down, ask her how she felt, and supported her. Eventually I did, but it wasn't soon enough and I feel terrible for that. Either way, it's a very hard disease. It's not just the individual that has Alzheimer's, but the family as well. It's something that everybody has to deal with in a mature manner and requires a lot of support. I'm sorry to hear about this, but you and your family will get through it.

(If my post goes too off topic, then please ignore it. I figured I'd expand the thread from just interventions/anticipatory measures).

 

[Sust]

Thanks this was exactly what I was looking for.
I find that there are way too many people with Alzheimer's and way too many family members who are connected to them who seem to have little to zero insight into just how bad things have gotten for their loved one and way too little done in the way of interventions. Sometimes, I just want to say: "How the hell did you not notice it all of these years?"

I also love modern medicine as much as the next person, but the studies of medications currently at our disposal are discouraging to say the least and probable minimally helpful in those who have already progressed too far in their decline. Maybe this would make more difference to those who were discovered earlier and willing to be treated earlier?

I have also spoken with this family member about it and offered what little support I had at my disposal, but his ability to outsmart his dwindling hippocampus is coming to an end. Other than that, he is extremely self conscious about his eroding short term memory and really refuses to discuss it any further. At some point, his short term memory will stop updating his long term memory, and his memory bank's last memories of us will be stuck in time forever while we continue to age and look different from the people he remembers. Worse still is the fact that his short term memory might slip to the point that he even lacks insight into how bad his problem really is and that is what i'm really bracing for.

He fortunately does have someone living with him, but it does come to a point where we all worry about even leaving him in the house alone for a few minutes which is why I've been looking into all of these gadgets to help us all out. Again, I appreciate any and all sorts of discussion about this if anyone has any questions, stories, or discoveries/inventions to share.

 

[KK]

My FIL passed away last wednesday. Unfortunately the MIL has Alzheimers and currently refuses to go into some sort of assist living facility. They live about 90 miles away so its not like we can check in on her daily. We are afraid that she'll jump in her truck and get lost and no one will know. Another issue is she won't answer the phone as her hearing is going, so we can't really call to check in on her. At the funeral Saturday she didn't recognize alot of family members so I don't know how much long she can function before we can get some sort of power to put her in a facility.

 

[Sust]

My FIL passed away last wednesday. Unfortunately the MIL has Alzheimers and currently refuses to go into some sort of assist living facility. They live about 90 miles away so its not like we can check in on her daily. We are afraid that she'll jump in her truck and get lost and no one will know. Another issue is she won't answer the phone as her hearing is going, so we can't really call to check in on her. At the funeral Saturday she didn't recognize alot of family members so I don't know how much long she can function before we can get some sort of power to put her in a facility.

You might want to ask yourselves whether your MIL's capacity to make treatment decisions for herself is still intact. If not, then you might want to look into legal help(i.e. lawyer) and whether your MIL already has an advanced health directive with a designated surrogate decision maker or power of attorney. Either way, the lawyer should be able to explain your options to you during the consultation. It's probably in everyone's best interests for you and your significant other to look into things now rather than wait for a catastrophe requiring a very urgent decision to be made.

 

[SociallyChallenged]

Thanks this was exactly what I was looking for.
I find that there are way too many people with Alzheimer's and way too many family members who are connected to them who seem to have little to zero insight into just how bad things have gotten for their loved one and way too little done in the way of interventions. Sometimes, I just want to say: "How the hell did you not notice it all of these years?"

I also love modern medicine as much as the next person, but the studies of medications currently at our disposal are discouraging to say the least and probable minimally helpful in those who have already progressed too far in their decline. Maybe this would make more difference to those who were discovered earlier and willing to be treated earlier?

I have also spoken with this family member about it and offered what little support I had at my disposal, but his ability to outsmart his dwindling hippocampus is coming to an end. Other than that, he is extremely self conscious about his eroding short term memory and really refuses to discuss it any further. At some point, his short term memory will stop updating his long term memory, and his memory bank's last memories of us will be stuck in time forever while we continue to age and look different from the people he remembers. Worse still is the fact that his short term memory might slip to the point that he even lacks insight into how bad his problem really is and that is what i'm really bracing for.

He fortunately does have someone living with him, but it does come to a point where we all worry about even leaving him in the house alone for a few minutes which is why I've been looking into all of these gadgets to help us all out. Again, I appreciate any and all sorts of discussion about this if anyone has any questions, stories, or discoveries/inventions to share.

I agree - I was the first to notice the differences since I had the most interaction with her, but she hid it amazingly well compared to other cases I've seen. You can't blame people for either being oblivious to it or actually trying to trick themselves to not see it. Both may be compensatory strategies to cope.

I know the medications haven't been very effective, but it's all that's out there. The side effects are similar to most other medications and, to me, worth the risk if they offer any reduced rate of progression. I've also heard of things like supplementing with coconut oil helping, due to the increased ability to deliver energy to the neurons within the brain. Since glucose transporters can get messed up with the neurofibrillary tangles, the medium chain fatty acids are supposedly able to get through the cell membrane. People may refute that the brain preferentially burns glucose, which is true. However, it will utilize fat via ketogenesis if it's getting starved otherwise.

A lot of the time, that's how it goes. My grandmother really avoided admission most days, but could sometimes admit that things weren't working right. It's just something that you have to go with - talk to them like they're still a human being. Treat them with respect and compassion - try not to baby them, if you can. Be there to help, but don't be overbearing. Both the family and the individual still have to live. It makes it easier if you find a good balance between regulation and freedom.

At this point though, he may not be able to be left alone. Sadly, with regards to supervision, he may have to be treated like a child. He's gotta go where the family member goes and that's that. It's not ideal and it can be frustrating, but it's the safest way. Plus, it allows them to be involved in the environment and interact. Sometimes that's a plus.