All necessary input relative to the initial discussion about my Aunt received. None further needed.

three4rd

three4rd

M1

welcome to the forum. Do any of you hold power of attorney for her? If not, you need to talk to a certified elder law attorney asap (look at nelf.org). If you don't have it and she won't grant it, you need to pursue guardianship, which is a more involved process.

Generally, when needing to make a move like this, the POA just does it and it is best not to discuss with her, you'll never get her buy-in. She is likely past being able to reason, so you just don't try. That's hard and counterintuitive, but it's reality.

Intermittent hallucinations can be indicative of Lewy Body dementia. They will respond to medication, but of course in someone 98 it needs to be very gentle, if any. Look up anosognosia also, it's a feature of dementia that prevents her from being able to appreciate her deficits. She thinks she's fine.

Another thing to bear in mind: typically, by the time families consider assisted living, that ship has sailed and memory care is more appropriate. Almost all of us tend to overestimate our loved one's ability to function.

Marta

I’m in medicine so the medical POA is a staple in my work. The wording of your POA covers about everything. You’re all set.

There is no need to treat the hallucinations if they don’t bother your aunt and are not a physical danger.

Iris L.

You mention taking meds and staying hydrated and having hallucinations, but she is not "there" yet. Your aunt appears to be in mid stage dementia, if she is not suffering from a medical illness. IMO, she she should be under 24 hour supervision, meaning not living alone. With anosognosia, which is not denial, she is unaware of the realities of having dementia. People with anosognosia are resistant to being told they need help. So you will have to learn the work-arounds that the members here use. Remember, you are not doing something to your aunt, you are doing something for her. You have a big job ahead of you. Reach out as often as necessary for guidance and support.

Iris

H1235

So what happens if she has dinner in the oven and then becomes disoriented, has delusions or has a hallucination and forgets about it. It could be very bad. I would be looking into AL now. It can sometimes take months for an opening. I would suggest securing a safe living environment first and foremost then worry about doctor appointments and medications that may help.

Hope5757

My 91 yo MIL has a 93 yo old friend who lives by herself. The friend is adamant she wants to stay in her home. Unspoken but very evident is the fact that she’s lonely and frightened.

She calls my MIL when the loneliness becomes unbearable and vents for a few hours. My poor MIL, who is in very poor health herself, just listens.

The friend had a person coming in until he couldn’t any longer. There were no safeguards in place so she’s now alone.

I regularly worry the friend will fall and not be found until it’s too late.

Iris L.

I'mgoing to be blunt : you're living in a dream world! Your aunt is a vulnerable older adult and her current living situation is dangerous for her. She should not be cooking unsupervised. I believe you know what you need to do, but are reluctant. You are not alone. You might speak with a Care Consultant for moral support and personalized guidance. Learn the work-arounds that members have used as to why anything is happening.

Iris

Iris L.

None of the PWDs want to leave their own home. Nevertheless, decisions have to be made on the level of care needed.

Also, PWDs have anosognosia, meaning they are UNAWARE of having dementia and UNAWARE of their limitations and UNAWARE of safety. Work-arounds are tactics to get things done without engaging the PWD too much. You do things and take steps in the background. You do not say, "auntie, you're losing it, so I have to take over." This type of talk will create conflict. The members have developed tactics and what to say to their own PWDs to get things done. Yes, if you read several threads, you will get the idea. Basically, don't say anything to upset her. Validate her feelings. This is called Validation Therapy. There are books and YouTube videos.

The Care Consultant is a social worker at your local chapter of the Alzheimer's Association who is available for just what you are dealing with. She can answer questions and help you develop a plan to go forward and help you locate more resources in your area. The Care Consultant is available 24 hours a day and there is no charge for this service. The telephone number is 1-800-272-3900. Call and ask to speak with a Care Consultant.

You are not alone in caring for an older relativewith dementia . Read a lot of threads. You won't find better guidance than what is posted here. And don't hesitate to post your questions. Members are experienced and knowledgeable and willing to share.

Iris

Phoenix1966

A common ruse that gets used to get a LO to a doctor’s appointment is to say that a medical exam is now required by whatever insurance (Medicaid, etc.) the LO is covered by to maintain their coverage. If the LO doesn’t go for a checkup, they will lose their coverage. In my case, I told my grandmother the doctor could no longer renew her various prescriptions without an in-person exam.

Ahead of the appointment, either speak to the doctor or get a letter to their office detailing all your concerns(and examples of behaviors you’ve experienced). Express your belief that your LO has dementia, is suffering from anosognosia and you are concerned about them living alone. Also, bring a copy of your POA to the appointment as well.

M1

I'm going to be blunt like Iris-Sounds like you are still clinging to the false hope that you can reason with her. Best to give that up and realize you are going to have to make changes without her consent. This is unfortunately like dealing with a toddler, you don't reason with them about not running into the road, you just do it. Ditto here. You have poa and therefore are under obligation to act in her best interest. You just need to make arrangements to change her living situation and move forward with it. I don't see where taking her for any sort of cognitive assessment is in any way productive at age 98. It's moot.

Iris L.

101 and 98 year old sisters! What a blessing that they have had each other for all these years!

You are living in reality. But with a PWD, you will have to enter her alternate reality. She may, and probably will, say some outlandish things. So what? You cannot convince her of reality, so don't even try, YOU WILL ONLY UPSET HER AND YOURSELF.

In the winter of her life, your goal is to keep her safe and comfortable. Don't argue. Read a lot of threads. There is a saying that reads: "don't argue, don't explain, don't..." (I forget the last don't).

Keep yourself calm. Caregiving is draining, even for a parent without dementia. You and brother need to be on the same page, otherwise you will work against each other. Read a lot of threads. You cannot find better wisdom. Don't argue. Ask about her childhood, she might have some good stories to tell. Even if some stories are conflated, or somewhat fiction, just go with it. Enjoy her in her winter.

Iris

Addendum: There are a lot of terms to learn. Become familiar with confabulation. This means a PWD will cobble together random bits of memory to make a story. To the uninformed, this looks like lying. But it is due to brain pathology. Just go with the stories. What difference does it make?

Iris

towhee

I understand not being able to read the forum, having avoided it for almost two years in the beginning myself. This is a link to a gero-psychologist who teaches about dementia and caregiving. You might find it worthwhile to browse or search her youtube channel, Dementia Careblazers, she has a lot of good free low key information.

https://www.youtube.com/watch?v=cVvi2X39Sio

(Hope that link works, first time I did one with a picture)

I agree with some of the others that she needs a medical check-up. There is no reason you cannot start with her current PCP, they can do almost everything a geriatrician can. A geriatrician is more familiar with the effect of medications on the elderly and more likely to notice small signs of problems and understand how small medical issues can have a large impact on the very old, but either doctor would probably give the same mini-mental exam and do the same bloodwork. You have said yourself that your aunt is not eating properly, is possibly dehydrated at times, and is taking her medications in error. She could be getting UTIs or being constipated. Any of those things could be causing mental problems and most can be checked by usual bloodwork. As Phoenix says communicate the problems to the doctor before the visit, and tell your aunt it is an insurance thing, a renew medications or discontinued medication that must be replaced, blame paperwork, new office policy, medicare regulations, etc. Please make sure your aunt puts one of you on her HIPAA release at the doctors office, the staff might be able to help you with that.

The thing is, when we want our LOs to do something we have to try to understand enough of their world, their framework, background, what makes them tick, to determine a "emotional hook". And then we have to be an unscrupulous salesperson who is not above manipulation. Right now, you can't see assisted living for your aunt. So, use what you have. Your aunt has accepted someone coming in. Increase the hours and get someone who will monitor medications and gently urge liquids and regular meals. Use whatever reason she will accept in your judgement. Maybe, current lady is going on vacation, and we want somebody to be trained to visit you when she is gone for a week, this is a summer internship, they are doing it for job experience, they really need a little extra work right now, you would really be helping them out, someone else is paying for it….. whatever works. Just avoid at all costs any hint of babysitting. If it works, then increase the hours again.

You might also look into technology. Many caregivers have used cameras to good effect, as well as remote alarms of various kinds. There are pill organizers as well, which would be helpful to a caregiver even though not now probably for your aunt.

I will leave you with a cautionary tale. My aunt had vascular dementia, and was starting to have hallucinations at night, although in daytime she appeared quite normal still. One night at 2am the police got a call from her saying that robbers had taken her husband outside and were beating him. By the time the police got there they found her a half mile away in her nightgown and bedroom shoes in 40 degree weather. Her husband had been dead for 30 years.

Iris L.

All good points above. In regards to making changes, a work-around tactic is to make the need for the change EXTERNAL to the PWD. For example, instead of saying, "you have to move because you can't take care of yourself", you might blame the move on stopped up plumbing or roof work. Thus indicating that the move is for the purpose of keeping her comfortable while the necessary work is being done. This is a therapeutic fib, or a loving lie. It is a work-around.

Always keep in mind that decisions are made on the basis of safety and comfort. It's a good idea to make a plan and discuss with a Care Consultant, who is a specialist in caregiving for a PWD and family dynamics. This can help to relieve your anxiety and anticipatory grief.

Iris

JeriLynn66

There is a link here on the site for "newcomers" established by @Jeanne C. Look for that.

My FIL is 98. I am his only living relative. A year ago I joined this forum. I cobbled together a plan for his care in Independent Living with meds given by a service. At the time @M1 advised "that ship has sailed, he probably needs Memory Care". M1 was right and yesterday I was touring private homes that will accept a 98 year old who now has a broken hip and is completely disoriented, incontinent, unable to feed himself, or perform any tasks. He is miserable, holding his head in his hands crying out "oh God!". He doesn't know me. He doesn't know himself.

I wish I had listened to M1. But, like you, I thought I could "reason" with him. I felt I needed to keep FIL "happy" and not upset him. Well, he's not "happy" today and I feel so guilty that I did not listen and act sooner. Things can turn on a dime. All it takes is one fall, one fire, one wandering event.

This is hard stuff. Safety first. Feelings later. I wish you well in this difficult journey.

harshedbuzz

@three4rd

You've already gotten some very sage advice from some of the best minds on this forum.

I feel compelled to take this scenario further. And I will be blunt because I get a sense your hair is on fire.

The POA your aunt gave you, when she was presumably of sounder mind than now, not only gives you the right to act on her behalf— it obligates you so to do. If your unsupervised aunt were to harm someone or burn her home down, you could be legally responsible.

You and your brother are not meeting that obligation if she is not safe. My concern is that someone like the neighbor she called at 5am is going to call APS and get them involved. If APS found you weren't acting in her best interests, the court could assign a professional legal guardian and you will have lost any decision-making for her. A guardian will likely liquidate her assets and place her in a facility that is convenient for them.

I can appreciate wanting to honor her wish to remain in her home, but unless she can fund 24/7 care this is not an option at this point.

HB

H1235

I found this helpful. It’s not a good image but hopefully it will help.

JDancer

https://alzconnected.org/discussion/comment/209153#Comment_209153

Your Aunt is blessed to have you and your brother looking out for her.

Please continue to learn as much as possible about dementia. You say your mother has "severe memory problems, but NO signs of dementia." Memory problems are a sign of dementia. At your mother's age, her memory may be normal aging, or not.

I know you have your hands full with your Aunt, I wish you well. Dementia sucks.

mommyandme (m&m)

When you are able to get your aunt to a doctor, a doctor you’ve hopefully contacted in writing prior to the appt about your concerns, let he/she be the “bad guy” about her living situation etc… Hopefully the doc will have some knowledge of the nuances in dementia patients.

As far as her being at home unsupervised, get some more help in. My mother lived alone in another state. My brother and I had to manage in home caregivers long distance and did so for about 1.5 years. We started with part time, then full time and finally 24/7 along with the use of cameras for more oversight. 24/7 was only manageable long distance for about 6 mos so we moved her to my state where I cared for her at home for 2.5 years. We had a facility as plan B, ultimately our situation didn’t need it, but if it did mom would’ve had to go.

All of this is difficult, painful and overwhelming to navigate. I’m so sorry you’re in the midst of this journey. Your aunt (and mom) are so fortunate to have you and your brother as advocates. Keep coming back to question, share, vent, and support, this place helps a lot IME.

Hope5757

@three4rd -

Maybe your aunt’s dementia is Lewy body? From what I’ve read, hallucinations are a primary symptom.

harshedbuzz

@three4rd

In regard to considering symptoms, it's important to differentiate between delusions, hallucinations and conflated memories.

My dad had all 3 and while they seem similar, they're actually different. Delusions are false beliefs. Often, they take the shape of someone intent on doing them harm. Dad believed mom was cheating on him and also that I'd somehow "cost" him $360K (sometimes outright theft, sometimes stupidity and having be swindled). The suspicious thinking was evident fairly early on— he was fixated on me "stealing his house and putting him in a home" and refused both his lawyer's and CPA's advice to create a trust or name a POA. Some folks have delusions of knowing famous people; there was a woman here whose husband dated Marilyn Monroe.

The hallucinations started in the middle stages. Initially dad's were mostly auditory. He'd hear kids playing in the guest bedroom past their bedtime. He only ever referred to them as "the kids" and we weren't sure if he was back in the 60s when I was a kid or the 80s when my nieces were or what. In the later stages his hallucinations were sometimes visual. Once he admonished me not to sit on a chair as his lawyer (and golf buddy) was already sitting on it. Another time he described tiny people walking through the wall from the courtyard and going into his bathroom. Interestingly, the hallucinations didn't seem to especially bother him. Mom would leave the room and come back saying she'd told the kids to be quiet or leave and I avoided sitting in chairs already taken by imaginary people.

Conflated memories, aka confabulations, are a little different. These have their roots in an actual event, but the PWD has forgotten critical details and will backfill the holes with random facts. Often, confabulations can sound very lucid to someone who isn't very familiar with the event as it actually happened. He once told a car salesman about driving "his" roadster on a summer night and managed to conflate the entire thing— he described a night in 1960 (when he had a sitter for the baby) and yet the road he claimed to be driving on was one he frequented in the 1970s (when said baby was a junior in high school) in a model of car first built in 1996 (both the 1970s roadster and the later one were owned by my mom). To the salesman, this story seemed completely lucid, but mom and I knew otherwise.

Dad confabulated a lot and about all kinds of things. He was often the hero in family situations. He was sometimes the individual who survived some personal ordeal (he claimed both mom's knee replacement and the flood that destroyed my first house in a single conversation).

The bottom line is that even if your aunt does have periods of complete lucidity, her care needs to be appropriate to the times when she's most confused and not functioning well.

I hope the clock works out. A number of us here have bought one of these and found their PWD was too progressed to remember to consult it when confused about the date. At the end of the day, technology and gadgets don't replace human supervision at some point.

HB

M1

Agree with HB on this, buying her a clock is the least of your worries. You seem to be missing the forest for the trees here.

H1235

https://alzconnected.org/discussion/comment/209532#Comment_209532

Excellent explanation!

jfkoc

It seems to me that the goal is to keep your aunt safe. I do not think anyone here thinks she is safe living alone. So the choices become

1. to let her remain living alone in her home knowing it is no longer safe.
2. provide 24/7 care
3. move her to a facility

I personally believe you can make #2 work. Praise your aunt, applaude her desire to die in her own home on her own terms. Make certain that she, your brother and you are all going to work to make that happen. Keep her trust. Assure her that you believe in her then go to work finding the people for the 24/7 care. I would start with asking her existing caregiver.

Now re the Drs appointment. It will not be all that diffucult to get her to an annual Medicare required visit. Tell her you agree it is n onsense but a must and include a lovely lunch afterwards.

It is imperitive that the Dr knows the situation….all of it…well ahead of time. He she might even be willing to aid you in your attempt to team up with your aunt. Make the Dr the bad guy for saying that she needs to move to a facility.

OK, you say. This sounds like a plot. You are right. It is a plot to keep your aunt safe and happy. That is your job now…..

ButterflyWings

@three4rd I hope you and your brother have heeded the warnings. You just can't let dementia run the show for your aunt (and you both). I am hoping that you decided to fulfill the POA obligation she entrusted you with before her cognition began failing.

It is hard to see if you are not there 24/7 and hard to accept, for wishful and hopeful thinking. We understand. I had to make this leap myself, as a distant caregiver for a 98 year old very independent relative who was obviously alone and increasingly vulnerable to phone scammers, local "workmen" type predators overcharging her, and even the nice trusted helper beginning to overstep. When I vented "Who DOES That!?!" one day about some liberties being taken that endangered my LO, I got a gentle but blunt wake up call like what I see our forum mates have been trying to give you too: "A POA is just a piece of paper. It requires someone to enforce it" said Crushed, one of our longtime members here, a lawyer and devoted spouse caregiver.

I packed my bags and moved to be with my LO for the next year and a half, and it was not a moment too soon. Please do not leave it to a neighbor or stranger to call Adult Protective Services (APS), or a new "friend" to take her banking and clean everything out, or even for her to wander off in the night the next time "no one answers", or injure herself and languish alone. In addition to the many dangerous things that could happen around the house, with what you have described I cannot imagine your aunt is taking her meds accurately. Not the amount, nor the time intervals — possibly not even the right med. That's just not possible given sporadic hallucinations and delusions. Please tell us you've faced facts and will not let nostalgia for her former independence cloud your judgment.

If I were you, I'd take the fiblets and workarounds suggested by our forum mates above, and get her to a checkup with a geriatric specialist if her current doc is not knowledgeable about dementias. And then I'd book her a vacation stay at a nice "resort" - maybe near her dear sister (your mom) for a visit. Most MCs have respite space for a week or a month at least, and you can go from there. Don't ask, don't tell is a "surprise!" gift in this case, and you can literally make future plans while she is in a safe place, without feeling guilty about it. Her agreement is not necessary. Let it be honestly like a nice surprise if it helps you to think about it that way, and stops the instinct to get her permission or agreement. She already gave that to you years ago. If the respite stay/vacation doesn't work out by the end of 30 days, say if a bed is not available for her to continue permanently, or you've found better arrangements for her safety then great. You could always move someone else that you trust, to her home with her to provide 24/7 supervision and care. That is what is required at this point. As Iris said, it is not something you are doing TO her, you are doing it FOR her.

Hoping all is well and that you have been able to move forward with the level of care that she needs, as everyone said. As my DH's neuro team said on diagnosis: you're in charge now. It is sobering, but you can do it. Please let us know how things are working out, when you can. I know I'm chiming in late, so maybe you have posted on a different thread. Sending you loads of encouragement and strength to take the reins.

H1235

You first posted in February. At that time many responded with suggestions that your aunt needs more supervision. As time has gone by those suggestions have become more direct and blunt. No one wants to put our loved one in a facility. It’s hard and can take some longer than others to understand and accept. But even after 4 months you don’t seem to understand. Being in the doghouse or her threatening to take you and your brother out of the will should not even be a consideration. Now you are talking about an appointment in September. As poa you have an obligation to take care of her since she is not capable of taking care of herself. You are not doing that! Your lack of action in getting her to a safe environment is heartbreaking and nothing short of neglect!

harshedbuzz

@three4rd said: As to POA, doesn't that also mean that you're supposed to honor your loved ones' wishes? She's said for years that she wants to stay in her own home as long as she can. We've been trying to live up to that, but realize that it's reaching the point where she probably shouldn't be left alone most of the time.

A POA obligates you to make prudent decisions on behalf of your loved one as it pertains to their health, safety, financials and their quality of life. The crux of the problem here is that Auntie made a wish, when she should have made a plan. My dad was like this; by choosing not to buy LTC insurance or set up a trust and insisting on living a considerable distance away from any family, he actually made the thing he claimed he most wanted impossible. At the end of the day he didn't prevent placement, he only limited options to mid-priced. Had your aunt elected to buy a LTC policy, she could fund the care she wants home. But she didn't.

At the end of the day, you aren't removing her from her home— the disease is.

The delusions and hallucinations won't change regardless of whether she's alone in her bedroom or alone in a memory care unit. Sorry but some of the scare tactics being employed here are starting to put me off from wanting to engage in further discussion.

I'm sorry if you don't feel supported. IMO, support doesn't always mean agreeing with someone. Long-timers here have seen and heard things that give us a sense of urgency that new members don't have.

The problem with delusions and hallucinations is that they can lead to a PWD taking action that can end disastrously. My mom left dad at home pre-diagnosis, and he hallucinated people looking in his windows (probably his own reflection) and came for them breaking glass all over the house. Another poster's dad believed neighbors were watching him on cameras in his house, he marched over to confront them and was met by a pissed-off neighbor with a gun. A woman in the next town got distracted by something outside while getting ready for bed and went to investigate; a dog walker found her naked body covered in snow the next morning. Living "independently" can be one of those situations where it's OK until it isn't.

And I do sympathize with this situation coming at a time when you have other pressing concerns. Sadly, there doesn't seem to be a convenient time to manage the care of our elder LOs. Most of us are dealing with serious medical issues of our own as well as launching/supporting adult children and even managing care for a spouse's parents.

HB

Quilting brings calm

I’m not going to criticize because I haven’t gotten myself up to speed on your whole situation.

I will say that being alone in a MC unit is different from being alone at home. The unit is locked so there isn’t any going outside in inclement weather because a resident thought they were needed outside( or to escape a ‘monster). Plus there’s a minimum of things they can get hurt by( no stove or knives for example). Staff is there to make sure they eat, drink, medicate, get dressed, showered

MC is the best way for caregivers to get part of their lives back and be able to take care of their own health and family needs. It’s hard to get through the process to get someone in a facility- but I think your own family needs will be best served if you can speed up the process.

My parent’s doctor told me once that I couldn’t make them happy- it wasn’t going to happen, I could only try to keep them safe. POA requires that you act in their best interests/ especially if their wishes conflict with their best interests. Even more so when they are no longer capable of making wise choices. It’s to keep them safe first, and handle their finances and legal matters second. A Living Will or medical form allows them to state their medical wishes- but you still need to make reasonable logical decisions for that when they can’t.

harshedbuzz

@three4rd said: I came across this on the alzheimer's association site: "The person living with dementia maintains the right to make his or her own decisions as long as he or she has legal capacity. Power of attorney does not give the agent the authority to override the principal's decision-making until the person with dementia no longer has legal capacity." Given this last statement, where is the line between having and no longer having legal capacity? If my aunt was living permanently in a state of delusions and no longer exhibited any reasoning power or moments of comprehension, then, yeah, I can see where any previous wishes (like her wanting to stay in her house) have to be overriden.

It is hard to draw a line. What I said was what the CELA mom and I saw had to say. Taken to an extreme, if a PWD were allowed to drive and harmed someone, the POA could be held liable. If a PWD started a fire when alone, APS could find the POA responsible of neglect.

Another old saw on this site is that care needs to be appropriate to the PWD's needs when they're struggling the most not based on some hopeful level based on them having a "good day".

None of this is easy.

HB

Iris L.

Harshedbuzz and Quilting brings calm, thank you for your thoughtful and dispassionate posts. I appreciate and learn so much from you and other knowledgeable caregivers who so are willing to share your own experiences. Better advice cannot be found.

I have had the experience of hiring a professional to guide me but she seemed to be waiting for me to tell her what to do. This is why I rely so much on members like you two and others, because I know you know what you are talking about and you don't beat around the bush. Years ago, two wonderful members gave me advice I didn't want to hear, but I believe it saved my life!

Iris

M1

letting a delusional 98 year old live alone and try to care for herself is not much different than letting a three year old try to live alone and care for herself. I fear you are likely to run afoul of APS if this continues much longer. If so, you may lose all rights and access to helping her.