Newbie Questions
Comments
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Youngest bro just called. He recalled that PWD recently brought up the subject of carpooling again. He said he'll ask him today...re your carpooling conversation, how about we start this Monday?
A step in the right direction.
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I have to say I think you are setting yourselves up for argument by discussing it with him at all. It's very hard to make this shift with any loved one with dementia, but it is a lesson hard learned by all of us, including me: the driving argument was the one the prompted threats of violence from my partner and landed her in the hospital and then in memory care. You just need to make it happen. And family consensus, as you're discovering, is very hard to come by. the POA needs to be settled asap.
I am still afraid you are putting too much weight on the MRI results. They are not likely to be definitive.
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Some progress, went to office of PCP, got copy of report from original neurologist appt. "...patient's MMSE of 22/30 places the patient in category of mild-to-moderate dementia." OK now I have it in writing. I asked if the PCP had contacted DMV. The front desk person excused herself and went to ask PCP. Her answer was any communication they have with DMV has to be treated confidentially; I may want to ask DMV. I asked generically, not specific to bro, would "mild-to-moderate" trigger notification. Both women at the front desk didn't know the answer. I was ready with the next step for Yes or No. I hadn't figured on Maybe. I'll stay on hold for the MRI and EEG reports. Perhaps we'll know then from neurologist's office if that triggers them to contact DMV. Meantime youngest brother is to discuss carpooling to work (today), and I'll ask this weekend about SIL beginning to drive the truck.
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I found something I didn't know. From a PDF on the MMSE:
Adapted form Folstein et al, Mini Mental State, J PSYCH RES 12:196-198 (1975)
Scoring:
24-30 Uncertain Cognitive Impairment
18-23 Mild to Moderate Cognitive Impairment
0-17 Severe Cognitive Impairment
I was totally wrong about how I viewed this intuitively. I figured "mild to moderate" fell in some middle category between Mild and Moderate. On this scale, there is no such thing as "Moderate". How can the CA DMV state that they will take certain action if the driver is diagnosed with "Moderate" or "Severe" Dementia, when the MMSE does not have a "Moderate" category? I find this confusing.
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Thank you M1, my thinking was that the MRI results will be discussed, and at the time of the discussion I would hope the Dr would discuss how this impacts him as a driver. It seems many here have advised that the best result would be the Dr making the decison, though we can not let that be the final word if he choses not to notify the DMV. I appreciate being pushed to do this (I'm not sure I worded that well). You and others gave me ammunition for the discussion with my siblings. I agree the DPOA and the other documents need to happen soon (within the next week, no longer).
Re family concensus, I agree. Oldest brother has agreed being out of state, he'll support anything decided here. With youngest brother, I've already informed him that the only way I'd agree to us each having POA is if he agreed it would be in heirarchy and that I was above him. We see the world differently, and I never want to be in the position of trying to convince him to see things my way. That was reinforced when I tried to go for concensus this morning. We just respectfully disagree on some points. Maybe I would have handled it differently if POA's we already signed.
Thank you again, I respect your advice.
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There is a term for not recognizing: agnosia. This is one of the 7 A's of Alzheimer's.
Iris
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Sister, when my HD was first diagnosed, he was already having driving issues. I checked with our insurance company to see if he was still covered, while driving with the dementia diagnosis. And surprise! He was covered. Scary!!! Then I was told that it isn’t the insurance that can be the problem. It’s the personal lawsuit that can be filed bY the other driver in the case of an accident. It would wipe us out completely! That’s all it took! I explained that to my husband, that we would be bankrupt, and I would be left with nothing. He immediately stopped driving.
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SSharkey,
Thanks for sharing that. That's the same approach my oldest brother is encouraging. Though I agree with the logic, I keep remembering what I've learned here: You can't reason with someone with a broken reasoner. If I decide to engage PWD in logic, that's one of my go to's. My current thinking is to bring it up when meeting with the Neurologist (note ahead of time) which should be any day now (MRI was Wednesday evening). If the doctors don't force the issue, I plan to just tell PWD we need to take him to the DMV to have him tested to ensure he is still safe. If I need to elaborate on the importance of him being safe I can go there, but I want to avoid reasoning. I want to present it as we need to go do this. Not optional. With PWD talking to younger brother about carpooling and talking to SIL about her beginning to drive the truck, I think PWD sees the writing on the wall.
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I felt foolish. I had written a reply and later realized I didn't recognize agnosia for what it was. I had it confused with anosognosia. My little memory tool of thinking the one (of the A's) that kind of looked/sounded like nausea at the end was the sickness causing you not to know you have dementia. I didn't notice that rule would apply to two words in that set of A's. I need a new tool for remembering these. : )
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@concerned_sister said: I was totally wrong about how I viewed this intuitively. I figured "mild to moderate" fell in some middle category between Mild and Moderate. On this scale, there is no such thing as "Moderate". How can the CA DMV state that they will take certain action if the driver is diagnosed with "Moderate" or "Severe" Dementia, when the MMSE does not have a "Moderate" category? I find this confusing.
MMSE, MoCA and SLUMS are evaluation, rather than diagnostic, tools. They're a quick'n'dirty way to determine if a person should be referred for a diagnostic workup initially and then later to get a snapshot of function as the disease progresses.
IME, these are not scales that consistently report incompetence or impairment. My dad's geripsych administered a MoCA in his office some 6 months before dad died. Dad did pretty well-- around a 23-24; his serial subtraction was remarkable. He bragged the entire way down to the hospital entrance about his intelligence and then toddled off and got in some random woman's car at the valet stand when I turned my back.
Thank you M1, my thinking was that the MRI results will be discussed, and at the time of the discussion I would hope the Dr would discuss how this impacts him as a driver. It seems many here have advised that the best result would be the Dr making the decison, though we can not let that be the final word if he choses not to notify the DMV. I appreciate being pushed to do this (I'm not sure I worded that well). You and others gave me ammunition for the discussion with my siblings. I agree the DPOA and the other documents need to happen soon (within the next week, no longer).
I sincerely hope the neurologist takes one for the team. I wasn't wild about dad's neurologists, but both were willing to be the fall guy around driving which allowed mom and I to be his ally in the unfairness of the situation. That said, it was still our responsibility to keep him from driving.
IMO, notifying the DMV is a moot point. There was an article in the NYT a while back about dementia and driving. In my state, doctors are "required" to report license holders with dementia but one of the neuros we saw with dad was quoted as saying he only did this a few times each year. At the end of the day, family are going to be responsible for keeping him off the roads. Full stop. If he injures someone, you will be responsible morally and may also be found liable as a POA. You could be putting his financial future as well as your own in jeopardy.
The goal here is to stop him driving. You don't really need to make a symbolic gesture of turning in his license, which he doesn't actually need to get behind the wheel, you just need to keep him from driving. Dad held onto his license until he died but he never drove once we were told he couldn't.
Oldest brother has agreed being out of state, he'll support anything decided here. With youngest brother, I've already informed him that the only way I'd agree to us each having POA is if he agreed it would be in heirarchy and that I was above him. We see the world differently, and I never want to be in the position of trying to convince him to see things my way. That was reinforced when I tried to go for concensus this morning. We just respectfully disagree on some points. Maybe I would have handled it differently if POA's we already signed.
I personally would not agree to a shared or split (medical to one person and financial to another) POA. I have heard of secondary and successor POAs, but never one in which one agent can overrule another. It's best to have one person-- Ideally his wife. I know you say her English isn't great, but it seems an interpreter or attorney fluent in her language might be sought. TBH, I would not sign on as a POA with the driving issue unresolved because of the exposure to liability. Be careful.
HB
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Thanks. Definite food for thought. Alot has to do with the personalities we're dealing with. I'm not in their home. My instincts tell me with no license and no insurance he would obide by the do not drive. With only his up to now submissive wife being the enforcer of not him allowing him access to her keys...that feels more like a recipe for disaster.
I'll have to look at the POA situation and what's doable. I think the shared concept we have (perhaps erroneously) is any of us with the POA legally could act on his behalf. In use it is agreed:
a) Wife decides things unless she abidates on a specific decision per confidence of her understanding. (At her discresion an interpreter can be used, but there are other lesser matters where she may be in the frame of mind "you decide". This is in part in respect to the cultural differences where she has been taught to be defferential. As a sample, if we all get out of the car at the same time and she winds up walking ahead of me as soon as she becomes aware she'll stutter her steps until she is behind me, because I am older (>10 yrs). When she came in to the family I tried to encourage her to walk ahead of me, especially when her husband was ahead of us both. That just made her uncomfortable per her upbringing and respect for age. At her request, I bowed to her custom rather than making her feel I was disrespecting this behavior that felt natural to her. They've been married about 20 years, and this is still how she prefers it. She will have to make the major decisions. It's sometimes hard to recognize when she's defferential purely on understanding, and when culture is playing a role.
b) Next it would fall to me to act on his behalf, unless unavailable (out of state on vacation, or some other circumstate such as severe health issue on my part)
c) in the event the above two were not available, youngest brother would be fully empowered.
Youngest brother expressed it would be nice if we could get it all notarized at the same time, and not have to go through this again in the future. He would only step up to exercise authority on a situational basis as described above.
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There is no need to feel foolish! Everyone is a novice in the beginning. The problem is that being a PWD and caregiving for a PWD are not intuitive, in fact, everything seems to be the opposite of what one would think. Even professionals are limited in their advice. This is why the members here are needed.
I had a cousin who married a woman from another country with limited English, similar in custom to your SIL. She became a widow unexpectedly, and had to raise their two young children on her own. Fortunately, my uncle, her FIL, stepped up and helped her. She later found people from her culture. Despite being "docile" in our eyes, she needs to be made aware of the reality of dementia,that she will become a widow, and she needs to be prepared. I don't remember if you said there are young children. She will need a LOT of guidance. I have a suggestion. The Greater Los Angeles Alzheimer's Association (not affiliated with the national Alzheimer's Association) has outreach to several cultural and language groups. I suggest that you seek the telephone number and ask to speak with a Care Consultant from her background. That person can give you more guidance and perhaps have a person who speaks her language.
No question is foolish. Keep asking. I also have to state that his diagnostic process seems to be inadequate. A MMSE is a screening tool to point to the need for further studies. Did he have any blood tests? Is he on medications with cognitive side effects? Is there a history of head trauma? I apologize if you have already answered these. This is all for now
Iris
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Iris,
The questions are welcome. I'm not sure I got your meaning, "This is why the members here are slanguage." I appreciate all that come by to offer their insights and advice. I think I went back and read about 25 pages of the most recent posts. There is so much shared experience here. I've read here, "you've met one PWD, you met one PWD." It's nice knowing we all have to adapt to our LO and our experiences, it not "wrong" to see someone else's solution not fitting your situatuion. I was talking to someone on my son's paternal side who had a loved one with AD. At one point in the coversation she was adamant that we could expect a certain behavior out of my bro. I was thankful I had read here about the variations, and not one size fits all.
This bro and his wife have no children. SIL has just recently been more proactive about learning things, and acknowledging the need to plan ahead. Thanks for the tip on the Greater L.A. group being multi-cultural. I'll have to pass that on to her. I re-read your suggestion, "I suggest that you seek the telephone number and ask to speak with a Care Consultant from her background. That person can give you more guidance and perhaps have a person who speaks her language." I can put that on my todo for next week. It seems I should have that contact info ready to share with her by the time they call us in to discuss his EEG and MRI. I think it would be nice to give her someone she can talk to about it that will meet her where she's at culturally.
The neurologist asked the PCP for the most recent blood work. Brother tested after meeting with the neurologist and that was sent to him. (Rough timeline, family meeting mid Oct asking brother to follow up on these issues. Brother immediately took the action of writing to his PCP (who he had seen not long before), telling of the concern. The PCP missed how poorly the email was written etc. Bro offered he had been intentionally losing a lot of weight, and drank multiple cups of coffee a day. Bro suggested they might be the cause of the cognitive issues. Blood test was ordered early Nov. I was nominated offical Nag in the Oct. meeting. I kept reminding bro to make an appointment to talk about the cognitive issues. Excuses and delays on Bro's part. In Jan I had a need to switch PCP's so I started going to this guy. Finally (with Bro's permission) at my appointment I brought up the email the PCP had from bro and the family's concerns. This got the ball rolling. Dr scheduled an appointment with bro about a week later, which I attended. This was early Feb. Blood tests were ordered but Bro missed he was to go do that. After speaking with the Neurologist late we got the MMSE, EEG ordered, MRI ordered, and recent blood work ordered. The lack of Bro doing blood work in Feb was caught and he did that early Mar. MRI was last week, EEG the week before.)
I have his rx information, and none that I'm aware of or that the neurologist questioned as having cognitive affects.
Head trauma, it was mentioned in his 20's in his submarine days there was some falling down the stairs and minor head injury though Neurologist stated it was unlikely to be connected to what we are seeing now.
Let me know if there are other pieces of the puzzle that would be helpful.
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I edited my post to read that "the members here are so needed. I'm on my smartphone and it sometimes makes some strange autocorrections. Sorry about that!
Iris
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Here is another aspect of dementia that relates to "excuses and delays on Bro's part". This is loss of executive function, meaning loss of the ability to carry out procedures or activities. Loss of the ability to carry out sequential steps. This goes along with forgetting. For example, Bro probably forgot the steps in how to make an appointment for blood tests, what to ask for, or why they were even needed, or probably forgot the entire conversation(s). This is dementia. You (the family) can no longer rely on him being sharp like he used to be and jumping on tasks and getting things done in a timely manner, if at all. You cannot rely on his reporting of conversations with the doctor or a financial person or people at work. It's okay to attempt to keep him in the loop, but the challenge will be to adapt to his fluctuating memory and cognition, because in the early stages there is a lot of fluctuation. One moment he may remember, the next moment everything is blank. And you will wonder, "what just happened here?"
Iris
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PS: why was he drinking so much coffee? Is this a strange diet? Be aware that PWDs in advanced stages may tend to drink solutions, such as cleaning liquids, believing they are beverages. If he has odd eating habits, he may be more advanced than you think. You say you live far from him, is it possible to spend a day or weekend for direct observation? Don't rely on reports, see for yourself. (IMO).
Iris
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Iris,
Thanks for your insights. Your words ring true. I now (as of January) go to/make his appointments. I now fill out his new patient forms. He and his wife always show their appreciation. In the early days, I didn't know my role yet. It seemed I was to "nag" him to do things. As you say, often the things he needed to do were outside his skill set. He needed help with his DAV paperwork. It was during that exercise that I truely saw how diminished he was in terms of doing a mulit-step process. I haven't hesitated to do for him since then. His wife has taken over handling the finances. I spent a few hours with him today as described previously. He's asked me to come back tomorrow to make sure we can log in to his bank and look at his accounts. He can log in on his phone with his fingerprint, but he currently is having issues logging in on a PC, and wants me to be able to look and advise. I can already imagine the advice that will come, as soon as the DPOA and other paperwork are signed, his access to his accounts needs to be taken away. It will be his wife only, and me as advisor.
As far as drinking so much coffee, he hadn't really stated why, only that perhaps that was why he was having issues. Clearly that's not the case, but he's down just to morning coffee and I believe he ordered decaf. After the family meeting in Oct he was convinced to quit dieting. His wife was concerned about him. As losing weight can be part of this disease, in hind sight I wonder how much of his weight loss in the last year were due to his intentions (he was dieting, and walking up to six miles), and how much was unrecognized disease process. I think he said his high was around 230 and he's down to around 180 on a 5'11" frame. Actually, I don't live far from him (within 30 minutes). His wife has asked me to meet him for breakfast every weekend. She mentioned it was to engage him in conversation. It seems she wants to keep his mind active, but there appears to be the twin motivation of having me observe him. I was with him from about 8:30 to noon today. I'll be over again for a few hours tomorrow.
Regarding your warnings about liquids, one of the things I did earlier this week was to email (to his wife and the other brothers) a set of PDF's found at this site among them was one about making the home safe. His wife acknowledged recieving them. I see brother at stage 4 on the Tam-Cummings chart. My perception is stage 5 is when he is no longer to be left alone. And over the comming weeks we need to be implementing the various safety suggestions. We (local brother, possibly my near 20 year old grandson) perhaps can all pitch in and help SIL get this accomplished.
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It's interesting to think through the implications of DPOA etc. I thought of it in terms of being able to help him, to do things on his behalf as needed. It's sinking in that no, as of this point, he STOPS doing those things such as accessing his bank accounts and investments. I've been framing it as he needs help. To have a, no, you have to stop, conversation will be difficult. I remember reading of the 360K lost by the father of one of our posters. Better safe than sorry can't be argued. Is it better to just change his passwords etc one DPOA is in place than to try to have a you can't do this anymore conversation?
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Concerned Sister, yes, there is a learning curve to caregiving for a PWD. You are learning quickly. Many of the observations in early stage could be explained singly as normal aging or personality quirks, but when they occur together over a period of time, they are not normal and require some looking into.
Regarding weight loss, yes that occurs usually in the later stages. In the middle stages, often a PWD will develop a sweet tooth and want to binge on sweets, sometimes refusing other more nutritious foods. Also they usually are less active thus they may gain massive weight. Good for him going from 230 to 180, if he was on a weight loss diet. But now he needs to stabilize. His lifestyle will be changing in many ways out of his control. This is a setup for overeating and/or alcohol indulgence and other unwanted habits such as gambling or visiting certain websites. Positive socialization and failure-free activities on his level should be available.
Iris
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Iris, thanks for all the information you've provided. He hasn't shown a tendency towards sweets yet. He has a neighbor he walks with on Saturday mornings. He introduced me to her this past Saturday. She talked to me for a moment before we left for breakfast. They've lived in the same neighborhood for decades. He intends to stay active, and I'm glad he has partners. We are in the process of activating tile devices that came in the mail this weekend. Sundays is another group of neighbors for walking. Their route has a bagel shop near the end of the route. His eating is now "normal", not dieting, but he's staying active. I have ZERO doubt in my mind that his changes have been observable to those he walks with. I state this per his word finding difficulty and freezing up mid sentence. And I'm pretty sure he's mentioned his testing to them. He hasn't had a drink in about 5 years and they don't bring it into the house. (We grew up with an alcholic step dad, so we've each seen where that path can lead.) As far as gambling, that one makes me sad. Over the years there would be various trips to Las Vegas where we'd have fun at the blackjack table. As it works out, the sibs had planned to go there last Oct and that plan got changed. That was when the older brother was in from out of state and was staying in DB's home. He was able to observe firsthand and our SIL pulled him aside to talk about her concerns. At that family meeting it was agreed I would help DB get a diagnosis. That role has expanded, but it's all good. Older brother suggested I seek out this site for help. This has been gold for suggestions of what we should be doing now, and what to expect down the road.
If I had to cite a downside on this, youngest brother hasn't been proactive in finding out what's ahead and how he can best help. He needs more of a nudge to see the deficits.
When responding here, I fight a battle between giving answers that paint the true picture, and wanting to leave some things vague enough that there is some degree of anonymity. Vauge is starting to lose more often.
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Regarding vagueness and anonymity: everyone here gets it because the stories are so similar.
Regarding younger brother: have him visit with Bro for a weekend.
Regarding sobriety: my point is that with dementia comes loss of filters and inhibitions. A PWD who was once sober might lose sobriety due to not remembering being sober. I'm not saying it will happen, but that it could happen. So be on the lookout.
Iris
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Iris, thanks for the warning. Re youngest brother, he's actually the one around DB the most. I almost wonder if it's the frog in boiling water.
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Just a couple of things that popped into my head ...
My sister was diagnosed with early onset AD and FTD. We caught it early, although not as early as we thought. Still, she was probably earlier stage 4.
Almost as soon as she was diagnosed I approached her about driving. I had noticed that her driving had become erratic - like weaving in her lane, and losing her car in San Francisco (but that's another adventure for another day), so it was time. I was gentle about it, and I got her to agree to stop driving. We immediately went to the DMV, and got a state ID for her. She was bummed, but accepting.
We also had an arrangement, kind of like 'don't ask-don't tell. I would only tell her about Alzheimer's symptoms if she asked me. A typical conversation would be Peggy saying something like "X just happened. Is that an AD thing, or something else?" Usually it was an AD symptom. Oddly, knowing it was "normal" (her word) was comforting to her. I can't remember now when that arrangement ended ... probably around mid-stage 5? She had a lot of cognitive reserve too, so I really had to be careful that that I didn't get lulled into thinking she was better off than she was. But the point was, she wanted to be involved, but on her terms, so I was happy to try to accommodate her. Once we got to mid-stage 5, I just made decisions and didn't discuss them with her.
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GG, thanks for sharing your experience with your dear sister. Your don't ask don't tell sounds like, for the early going, that worked for you. For now, I'm not pointing out his repetition or his deficits. I hope my DB surrenders his license as easily as your sister did. But more than that, I hope his Dr forces the issue so it will be like the decision is out of our hands. There were other things going on today so I didn't make it down to the DMV to ask the questions older brother suggested.
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Regarding "you can't do this anymore" conversation. IMO, I think this is horrible, not the right approach. Your PWD will resist especially if they have anosognosia. PWDs forget. IMO, it is best to remove triggers. Example remove the car to avoid discussion of driving. Remove bank statements, credit card statements and the like, to avoid discussion about money and finances. Blame everything on Covid! "Due to the virus, the bank is doing things a new way". If PWD wants to "learn" the new way, then, "next week, when I have time off from work". Repeat each time this comes up. Believe me, it won't come up often, because they forget. It's true, out of sight, out of mind. I include myself. Just this month I forgot to pay two bills that were sitting on my dining room table. Fortunately, I have auto-pay for one. Do the work-arounds in the background. In the meantime, keep your LO engaged in enjoyable failure-free activities.
Iris
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Here's the latest thinking.
Oldest brother is an ally and we are seeing things in the same way. Youngest is a bit of enabler. Oldest had a talk with the youngest to get him on board.
Oldest and I talked a bit about SIL and how to this point she hasn't been proactive. Oldest made up some parable with the ending being you can't wait for DB to be bleeding at the curb to discover there was perhaps misplaced faith in SIL's abilities. He made a very strong case for not waiting to be asked etc.. as it seems she's not yet aware of what's about to hit her we need to be more proactive.
The journey started with a family meeting last Oct. Youngest and I had agreed we'd have another family meeting with DB and SIL after the diagnosis came in. In between, on an ongoing basis I've been sending links to info, links to videos and attached documents in email to Bros (not PWD) and SIL. Oldest and I agreed as part of any family meeting, I will tell SIL I need to sit down with her - the following week on her day off - and look up her insurance benefits, her retirement benefits, where they stand financially including any debt and put it in to a spreadsheet so we have numbers to take with us to any meeting with the CELA so that it's a productive meeting. Oldest brother made the point that it's not enough to just make sure she takes over paying the bills, but it would be wisest if I helped her plan a budget. Paying for x number of unneeded subscription, making sure they are paid on time, is not the same as saying do we really need all these and where can we economize for a pending reduction from wages to SSDI.
Transaction from working to SSDI is tricky. The enabling youngest brother is in a postition to make sure whether DB stays on payroll. Talking to older brother I think they need to discuss this with the CELA. I think DB should be put on medical leave immediately with continued payroll for a period of time, but my understanding to qualify for SSDI you have to be to the point where you can no longer be gainfully employed. Perhaps CELA can suggest a strategy of taking $ from IRA to meet expenses for a period between wages and SSDI. Even enabling brother can acknowledge DB is no longer contributing in the work place. In a private conversation with SIL, we need to be clear on the strategy of taking away access for DB. She will have to turn to me or a sibling for input on finances. As you say it should be out of sight out of mind once we go to the CELA and have everything signed. The family meeting will include DB, but we'll not expect him to drill down in to the details, and we just can't after that. We'll need to get her to commit to not letting him drive. I think all of the sibs agree they should sell both vehicles and just have one that she drives. Even she said something similar to that when we came home from the MRI. (Her vehicle has a lot of years on it, and she is not comfortable with his maybe 3 year old truck. Turn them both in for something she would be comfortable in and would not let her hubby drive.)
That's the current thinking.
I called the office of the neurologist today. Front desk could not tell me if the MRI came in. She said his chart was in the neurologist office. She stated he gathers all the puzzle pieces before setting up a discussion of the results. She left it open as to whether he might order another test. She said she'd call tomorrow, assuming the chart is back in place, and let me know what the next step is. I've been in contact with DB letting him know I'll call him as soon as I hang up.
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Sister, you guys are really good siblings! You’re so fortunate to have each!
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Thank you.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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