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"...I need to be able to talk honestly with her about this when she starts going off the rails"
Knowing and trying to tell her she has it will get denials/possible arguments. Bad idea. Honesty generally doesn't help, even if the doctor tells her. We NEVER used the dementia word with mom. The PCP doc said 'It isn't safe for you to be living alone...' - OH boy, bad idea!!! Knowing she has it is good for YOU, so you can read up on it to be armed with all the knowledge, tricks and tools of the "trade".
Dementia defends itself and you can't reason or argue with it. You can explain all you want, but it won't change anything. It will only frustrate you and/or make you and/or mom angry. She is not likely to accept Dx of dementia. Using dementia diagnosis in any way isn't the way to "manage" mom.
"I don't know how to start them when she insists on living this "charade of independence" (I recently saw that term on this site)."
Mom forgot what she said/did minutes after saying/doing, but she would say she is old and entitled to forget sometimes. Never said it to her, but 'Sure mom, I forget too, but repeating the same thing over and over in 10 minutes is not simple forgetfulness.' She also maintained she was 'Independent, can take care of herself and can cook', none of which was true, but you could not convince her otherwise. All you really can do is "authenticate" their reality and try to change focus to something else. Trying to correct her or make her see reality will only frustrate and anger her and you. Mom clammed up when I did this once, before I understood better how this damn dementia works!
"...wanting to buy a pontoon boat and get cosmetic surgery..."
DEFER!!! Learn how to push these ideas out until maybe they are forgotten - for instance: 'Oh that boat is very expensive, let's wait a bit for it to go on sale!' and then change the subject to something completely different. Cosmetic surgery? You can always pretend to make an appointment and tell her it is 6 months away, they are all booked up (you may have to enlist their help, if she still uses the phone!) They DO lose sense of time and forget they mentioned these things, so these deferments can often be repeated later!
Changing focus to something else can work as well (I call it the 'Hey, look at that squirrel out there! There! You don't see him? Oh he's up in the tree now'). Often times this will change their focus to something else (doesn't have to be a squirrel) and at least temporarily they will forget the original statement/desire.
Going forward, arm yourself with information and tools! I liken it to being prepared for a baby/toddler/child to progress to a stage that other's might not reach until later, such as rolling over. Often babies get hurt because the parents didn't anticipate it would happen yet. You cannot count on any dementia documentation to know WHEN any particular stage or behavior will happen, or even IF it will, but knowing that it CAN will help you recognize it when you see it! Learning how to refocus/redirect or "fudge" answers to questions or desires to do something will help immensely. Agreeing with any delusions she might have (mom has not as yet) and working to calm, reassure and soothe her work better than denying the delusion, which is all too real to the person.
Recommendations (your profile says she doesn't live with you):
Set up safety measures.
If she takes her own medication, use a locked pill dispenser.
Install cameras.
Keep learning as you go!
Take over finances, including rep payee for SS and change billing to your address.
Remove all paperwork and valuables for safekeeping.
Funny thing mom did - another resident's daughter wrote an article for the paper and had a picture of her w/ her mom. Mom reads it, sees the pic and tells the resident that she is here because she's nuts!!! Even funnier - mom never questioned why she herself was there.... Enough sense to make the statement, not enough to make the connection
**Per your after-appointment post, this section is mostly moot for you, but it may help others. It's good that you found a smart and compassionate doc for mom!
For appointment(s) to test for cognitive issues - sure, let the patient go in alone if they want to. You can provide information to the doctor beforehand, and hopefully you can discuss with the doc after. Doesn't matter how much the person tries to fudge, any *competent* doctors have likely seen it all! Many people can fool others who do not see them on a regular basis or didn't know them before, especially in the very early stages, but generally they can't fool the specialists who've seen it before. With heads up from you and discussion after the exam, you should be fine. Just hope the person is at the early stage, so that you have time to get to EC attorney and set up POAs!
We did not have to go this route - mini exam was done in-home by a nurse associated with the aide company we were hiring (didn't work out as after a few months she refused to let them in!) Some POA documents require medical confirmation, so this might be needed for that. So far, just the POA was enough for us and thankfully we had it all set up long ago.
I noted some posted comments saying how the person could fool the doctor or other family members. This can be frustrating, and I can say my brothers were clueless as well. In the earlier stages, the person can learn how to cope and it might only appear to be some age related issues. For any family member who is in denial, have them come spend time with the person - not just an hour or so, stay for the day or better multiple days. Be there at different times of the day! The charade only works for a while and often not long. Installing cameras, if possible, can help document what you already know and might help convince those who don't see it.
YB didn't understand where mom was at and even kept insisting mom would prefer the AL vs the MC, saying she wouldn't want to be in with a bunch of old farts. Well. if he knew anything about AL, it has MANY old farts! Some people just need a little help for now and chose to move there, to prepare for future needs and/or just to make life easier for themselves. Others use walkers, wheelchairs, etc and need assistance in varying levels, but are still "with it" mentally. In general, this is where most older folks would go if they choose to (they may start at IL - our facility has all 3 levels.) He didn't understand that there is no way to prevent mom from walking out - his comment to that was that she doesn't wander. No, not from her own place...yet at that time. But in an unfamiliar place, as memory regresses, etc? Nope. Staff also said no.
But, getting a firm Dx if needed, and learning all one can about dementia is the best way to help the person and yourself. Understanding and being able to anticipate what might happen going forward is key. Learning how best to cope with whatever dementia happens to throw at you helps avoid frustration and anger issues, for both you and the patient. Knowing when you are in over your head is also important, so as to prevent care-giver meltdown and/or health issues for yourself. You will be of no help to the person or yourself if you don't prepare.
Prepping my reply, I found your link to the appointment post, and posts from you and others, so I've revised it and this one will mainly focus on getting the POAs.
The various suggestions made by many others about getting POA ASAP do still apply! It is good that you got the health proxy - but will it work for other docs, hospitals, etc, or do you need to repeat for each? Also doesn't cover financials.
With current test results and how some EC attorneys work, IF you can convince mom to set up financial/medical POA, she might squeak through. If the attorney deems her capable to sign, do it ASAP! We did this with mom when she was in the early stages - he decided she was aware enough and we proceeded to update everything. Generally a first consult (you could do this without mom there) is free, maybe 1 hour, so have all questions prepped beforehand and take notes! Also, if she has a "better" time of day, such as before noon, set up the appointment for her during that time.
Approach it carefully with mom, explaining if she needs hospital stay or surgery for anything, you would need it in order to pay her bills and ensure she gets her SS and other checks/income. Stress this allows you to advocate for her medically/financially when she's unable to, NOT that you are taking control away! Focus on how this is only for an emergency (meanwhile, you can start the takeover process anyway.)
If she is has enough assets, those should pay for the attorney fees, not you. If she has many assets, consider setting up a trust as well.
One last note - if she gets SS, you can sign up for rep payee. This can be done without any POA (SS does not honor any POA.) Work with local office, not the 800 number. They do it in person, so make an appointment and apply. It really isn't difficult and it will protect her assets from any scams and her propensity to spending on frivolous purchases (pontoon boat!!! hahahaha!) She will get notice and it might upset her, so if you can snag mail before she sees it, might be best. If they approve (I had NOTHING from doctors to provide, so it was not based on any diagnosis!) you have to set up a special rep payee account. It will stop any regular payment, only you have access to this account, first payment comes as a check, then you can call and set up electronic deposit. They do require a yearly accounting for how the funds are spent (and rules about how it can be spent), but if you keep good records, you'll be fine. It can be reported online.
I started keeping a list of usual things that my mom was doing plus my father would call me and tell me things when she was in the shower. If he said anything in front of her, she would deny and get really mad. I told dad I was going to make a doctor's appointment with her doctor and I would be going in with her whether she liked it or not and my dad said good. I made an appointment with her doctor and explained to them why I needed bring her in and needed to let her doctor know ahead of the appointment of my reasons and I was told to write the letter and either mail or drop it off and they would make sure her doctor received the letter before her appointment. I told dad if she says I don't need to see the doctor, tell her that they called that it was time for her check up.
I wrote my letter explaining why I was bringing her in and our family concerns and we really needed to know what was happening with her. I enclosed a list of things that mom was/is doing, but I do not want mom to know that I alerted the doctor ahead of time. Once at doctor's office when my mom's name was called I got up to go in with her and she shot me a nasty look and said you don't need to go, but I said I am going just to make sure that I understand what the doctor is saying so I am going in with you. She didn't say another word. I rather her be mad at me, but I would know we were on right track in finding out what was wrong with her. Her doctor was great. When her doctor asked how is your memory and my mom said my memory is fine. I spoke up and said "mom as you know as we age even me we get forgetful about some things and we want to make sure that you as you age that you are on the right track and don't have issues like your sister (she too had Alzheimer's). Her doctor jumped right in and agreed that it wouldn't hurt to be more thorough and see a specialist just in case if at some point mom started having issues we could head them off. Doctor suggested a specialist who would do a more extensive check up than she could do. I told mom that sounds like a good idea and if it was me I would do it and I almost fell over when my mom agreed. I was expecting an argument, but I was determined that she was going to see the specialist whether she liked it or not. Her doctor contacted a neurologist and forwarded all information over to her. After neurologist appointment, testing's and MRI completed, it was determined that mom had Alzheimer's.
I had to do all of this behind my mother's back so we at least have a diagnosis and she can't get away lying to the doctor anymore. The diagnosis was blessing because they put her on medications that delayed some of the really bad symptoms of Alzheimer's short term, but at least we knew what we were dealing with. My father who was so frustrated not knowing what was going now had a better understanding even though he really didn't understand what Alzheimer's was, but he knew that mom was "sick". My brother and I now knew how to handle things better when mom did or said strange things. For us, it was better knowing what was wrong with her than not knowing.
For us doing this as you say "on the sly" was the best for mom and for her family, who now understood what was happening to her and know what the future holds. My mother was diagnosed 7 years ago and she is now in later stages of Alzheimer's.
I learned that sharp neurologists know when clients are trying to cover their memory issues. They described it as having pat answers to typical questions so it makes them seem to others as being 'ok'. When it gets worse though, they get around the client by giving it a few minutes then to go back around to the same questions and simply ask, "what was that Q about the xyz?" and they are stumped.
Anyway, what I think is funny (irony of life) in my 20/20 hindsight is - the husband I cared for always seemed the 'ok' one to everyone because of that tactic, and his wife was called the one w/dementia, when in reality, his downhill slide started years before hers and SHE was an ornery gal that just wouldn't cooperate so they thought her's was worse! God love them. They both had dementia but expressed it differently & God made it work for them. There are some mercies in life.
When she went to the Neuro dr they are experienced with “ show time “ and she could not fool them.
The dr reminds her she was diagnosed with dementia and she tells him she does not.
Feel your pain and anxiety. Hubby with Parkinson's has been Oscar material for snowing the neurologist and the kids into thinking that he is doing good. Of course the kids only want to see the good stuff. The neurologist just wants his share of the Medicare payment. Hubby is a showtimer - a term I got from this site. He can fake total normalcy, but it only lasts a short time. Key is to keep him engaged as long as possible so that his true condition comes out. Kids are starting to get it, and I think the Dr. should already know it. The tests they give them are hard to deny. Simple questions/requests that they will answer with varying degrees of correctness, scaled on 1-30 points (MMRSE I think is the name of one of the tests). You will experience some relief when you see the results. Good luck to you, and like another poster said, stay in the corner and only respond to the doctor if he/she looks to you for confirmation or denial. Prayers, 'cause it ain't easy
Sorry for the book I'm writing here - lol! I also have the aide take mom to mass on Sundays and then to a movie but make sure I check the movies out before I tell the aide which ones are more appropriate.
Once in a while, like on holidays, I take mom, the aide and a friend out to dinner so that celebrations are not eliminated.
I have animated toys that play songs and items that light up, which make her smile and laugh. One toy is a plush kangaroo that plays the song, "Despacito" as it shakes a set of maracas - lol! When I hear that song in the morning, I know that mom is making her bed. Yes, she still likes to make the bed.
I strategically switched bedrooms with mom because mine was the master bedroom I shared with my late husband. We have a junior four apartment and I turned a smaller room next to the kitchen into a room with a daybed. That is where I sleep now. It's cozy and it's just fine. I'll soon have to put locks on the doors for it though because mom has lately been searching for her missing jewelry or money or phone...the list goes on. Best advise that I have learned in those instances is to distract and redirect. For instance, if she starts asking for a cell phone, jewelry, etc., I say, I'll be right back - I have to go to the bathroom or, I had a really bad day at school or work and I just need a hug. I've also learned that therapeutic fibs are necessary and kind in many instances to protect them from themselves and others.
I forgot to mention that mom can still shower herself, and gets around with a walker and cane. she needs someone to be with her or nearby because her balance is a little off. I took control of her meds because she cannot remember a lot of things and I thought it best to take care of that for her. I keep her allotted medications in a case and refill each slot on a weekly basis.
Sundown or Sunset dementia is definitely interesting so rather than give her a sedative like Alazopram (i.e., Xanax) when she has more anxious moments, I have the aide give her two melatonin gummies with her last pills of the day, which are given with her dinner. I checked with her cardiologist first and also had her general practitioner evaluate all of her meds in addition to the dementia ones.
Mom takes Levothyroxine as her first pill of the day because she had her thyroid removed a few years ago. Other pills are for sugar, cholesterol, heart, stomach...
When I had her current doctor evaluate them, he reduced her pills by nearly half.
Her Cardiologist is the one whom advised me to give her melatonin instead of Alazopram whenever possible because, in combination with all other pills, it knocks her for a loop.
I also try to keep mom to a structured schedule so that she gets accustomed to new routines. I tried to bring her to a senior center after checking out a few in our neighborhood but she did not respond well to it at all and started to shut down. The doctors advised me not to force the issue. I therefore bought puzzles, a keyboard, memory games, adult coloring books and lots of movies in addition to having an Amazon Prime membership and Netflix so that she always has something to watch when she wants to. The aide also takes her for walks whenever possible and, when the weather is bad, they go up and down the hall a few times for exercise. Every day has its own challenge but I try to do my best.
And, in case you were wondering, yes, I've had the occasional melt down and that is when I reach out to the Alzheimer's association. They have 24/7 counselors available on the phone so, even if I have to go into a stairwell to speak to one of them, I do that when the aide is here. When not, I wait for her to take a snooze and then call someone. This site is also very helpful.
Me again. The hospital psychiatrist and mom's general practitioner gave her quick eval questions that mom had already memorized (if you can believe it) before they walked into the room. She was trying to bluff her way through so as to get out of the hospital. Each time she realized they were making their rounds, she asked me certain questions and I very soon realized what she had done. One at least 3 instances, I excused myself to go to the restroom when I was really running out after the doctor to explain what had just happened. I asked the psychiatrist to come by at a different and to ask her different questions. He did so and realized what I was talking about.
I was lucky to get a healthcare proxy for mom while at the hospital. She very nearly refused to sign the document but the social worker asked her what she would want them to do if she was no longer able to breathe for herself etc. Mom replied that she did not want to make those decisions and then the social worker calmly said, that was fine and she did not have to. She then asked her who or whom she would like to make those decisions for her. Mom replied, her husband and her children. By default, that meant me and mom signed. Phew!
I was also able to get POA for mom during one of her more lucid moments after the meds took effect. I retained an attorney to provide me with proper forms for her and also to help me get Medicaid for her and also established a trust account for her for her own sake and mine. I'm still waiting for approval and aides are costing a fortune in the meantime. All prayers welcome that it gets approved soon!
I got home from work a little while ago and relieved the aide for mom.
The hospital neurologist prescribed:
Gabapentin (2 a day)
Resperidone (1 a day)
Escitalopram (1 a day)
Mom does have vascular dementia. I insisted on the neurologist giving her an MRI while at the hospital. Thank goodness I was in the hospital with her because I overheard him dismissing it. I approached him and said that if it was an issue of money, I would pay for it but that I wanted him to do it even if it was only for my sake. Thankfully, he complied because the cardiologist, whom asked for 2 EKGs for mom said that it was necessary as a baseline. The new neurologist that I took her to after the hospital stay said the same thing.
The EKGs revealed that the main valve to my mom's heart is also nearly completely sealed with calcium deposits. so, I could lose her to that or to dementia. It's a cruel thing when the mind starts dying before the body but that is pretty much where we're at right now.
As mentioned earlier, each case is as individual as the individual themselves. Mom is happy when I hug her, when I bring her little gifts like a solar bobble head to make her smile...silly little things. I don't consider it my job to make my mother happy or to create pleasant moments and care for her. I'm not saying that it's easy and, yes, it is exhausting and many times frustrating but I am able to do it at present and will continue to so for as long as I am able.
I've had Nest cameras installed in my apartment so that I can "check-in" from time during the day and make sure she is ok. It also keeps current and future aides on alert that I am keeping an eye on things.
When mom was admitted into the hospital, she removed her jewelry and handed it to me. I put it in a safety deposit box in the bank to keep things safe for everyone's sake. She wears very nice costume jewelry that I've given her more recently but things of more value are safely in the bank. I did this because I did not want her to accuse anyone of taking things from her. She does not remember even being in the hospital - let alone removing the jewelry herself and has made up fantastical stories about how it happened such as accusing my daughter (I have no children) or other long-deceased relatives.
I also disconnected the phones and decommissioned her cell phone after retrieving the contacts and calling her friends to explain what had transpired. I had to do this because she was calling them repeatedly asking where my father was. While in the hospital, she asked me where her husband was and I replied that, dad had passed away about a year ago." Her response to that was, not your father - I mean the man I'm married to now. He's very nice and he's your father now so you'd better get used to it.
The cardiologist found me by the elevator banks in the hospital crying one night and spoke to me. She told me not to lose heart because, based on what she'd seen on the test results, she believed that I may see a bit of what was my old mom before this happened and that I would need to let the new meds a chance to take effect. She further explained that it may take about a month for this to happen. She was right. Some days are still better than others even now and it's definitely a rollercoaster ride.
I spent a good part of 2017 flying to/from Florida, and watching my dad die slowly. My hotel room was either a hospital or a rehab center. Mom would not leave dad's side and it would give her some relief and time to sleep a little when I was there. I was thankful to be there with my mom when my father drew his last breath. It is my prayer that I can help my mom along on her journey and be there when she draws her last breath.
My story - I lived in another state from my mom (her choice & I had to move in with her). Her doctor says - "So when is your daughter supposed to arrive?" Which meant that the doctor was going to act differently if my mother went to the doctor by herself! And it happened! A few days before I could arrive, my mom had a doctor appointment. I asked "did you get a resolution? My mother - "No." Me - "Why not?" My mother - "When she asked me what was wrong, I said nothing was wrong." So a wasted trip. I told her that she must speak up to her doctor!
Also I would suggest you find a way to get POA/MPOA/DPOA buttoned up quickly because if there is any question about her cognitive ability it might end up being too late...make sure she understands it only means you can act on her behalf not force her to do what you want.
Four years ago I wrote a letter to my FIL's neurologist explaining my observations of my FIL in the morning versus afternoon, and my concerns that he was in cognitive decline. Many falls and ER visits later, this neurologist only recently determined that FIL has mild dementia. Very frustrating.
what I did was told her ok as long as mom, and myself will sit down together with the doctor so I could be updated on whats going on once the visit was complete.
I did give the nurse in the office a phone call and gave her a heads up to how sneaky my mom would be. I told her my concerns and questions they needed to ask her.
its the only way to handle them thinking they are getting there way and yet you are involved with the health issues also.
my mom after a few visits when she first got sick, gave up and let me in with her and things went fine from than on.
good luck.
I wonder why we even go to the doctor appointments like clock-work if honesty isn’t on the table? I told my mother how I felt and she’s a bit better now.
I am there too so I can interpret what the doctor says, as sometimes she doesn’t understand what it’s all about. It’s to help me too. I am her care-giver and have been for over 7 yrs now.
She kept looking to me for prompts when the doctor asked his questions. I felt bad and like I was throwing her to the wolves.
She did pretty good faking her way through it and the doctor finished with his questions but then he said. "I'm just going to give you a refill on your Tylenol 3's. My mom said " oh, I've never taken those before" But she had been for a while. Sometimes it's the little things like that that can trip them up. Hopefully your mom's doctor won't stick to the usual prepared script that your mom can fake her way through.
It's sad that we want them to fail in a way so we can get them the help they need but I guess it's one of those necessary evils of being a caregiver.
And we go home and since I am living at her house now (watching her like a hawk), we might as well have not gone. Then we go back to the 24 hour cycle resumes.
I'm beyond furious that these guys aren't paying attention or picking up on the numerous signs that mom's doing a song and dance for them.
I sit next to or behind, my mom shaking my head, but they either ignore me or say to me "let her answer".
I don't know if this is a 'doctor/patient privacy' issue, &/or that I'm not legally her guardian?
I love this forum--it's made a HUGE difference in my life!!!
I'm in California. Five years ago when I contacted Dept. Motor Vehicles about mom's inability to safely drive, I was told they don't have authority to revoke licenses, and that seniors often/frequently will voluntarily admit they don't feel safe driving anymore, and will voluntarily stop driving. Meanwhile, anyone other than my mom could to anything--but wring our hands and worry sick whenever she went anywhere. As most of you know, losing the ability to drive is the biggest of all the adjustments that need to be made as we all go through this phase of life.
Best of luck.
**********
1. Place a pencil and a piece of paper in front of the subject. As a practice trial, ask the subject to “Pick up the pencil and then the paper.” If incorrect, score 0 and do not continue further.
2. If the subject is correct on the practice trial, continue with the following three commands below.
Ask the subject to “Place the paper on top of the pencil”
Ask the subject to “Pick up the pencil but not the paper”
Ask the subject to “Pass me the pencil after touching the paper”
Note: Place the pencil and paper in front of the subject before each command.
**********
So: if your mother is struggling, they don't plough on regardless. You can also see that the tasks are deceptively simple. You could follow those commands without even consciously thinking about it. A person with dementia (past a certain point) can't.
Your mother knows well what happens to her and is therefor i n the dienial, hoping that it will never happenbecause she is affadi of the consequencies. If your médical is an experienced professional,
In reality she will naturally try to fake, she has probably a lot of past expériences with success, but probably never with regard to démentia, why should she admit it to you her son. When the doctor discoure de fake answers, he knows exactly how to react
if by the first contact he has established a mutual confidence. The consultation cannot be one a bundle of tests and basta, no, it needs time and mutual confidence to by-pass her denial, as she is intimately convinced that notons is wrong, so does most of the persona starking a dementia.
At last dont be convinced that someting fil take place the way you think, most of the time it is the opposition, you mus stop telling your mum what you are affaid of, do trust her in order to be able to bring her to the réal professional doctor to be able to proof she has nothing because you are affadi that she really has something as you are probable certain she has. You must be diplomatie with her so that she starts to trust you and that takes a ± long time.
If you would like to start the diplomatie way, talk first with the physicien to develop astrategy as hour mother now knows your opinion and maybe thinks in hersent that you want her away what she will combat till the last minute.
In all thèse cases the denial is very presant and normal, what would you do if you were in the same situation as she is ?
Success and stengt is what I wish you.
Take the time that is needed as time does not forgivre what is not doyen with him.
"Assessments are performed by mental health nurses, psychiatrists, occupational therapists and [clinical] psychologists. One fairly common tool of assessment is the Addenbrookes Cognitive Examination which tests specific areas of cognition including memory, attention, orientation, language, verbal fluency and visuospatial abilities. There is also the use of a semi structured interview which gathers information about an individual's experience of memory problems, and the onset and progression of any difficulties with cognitive functioning, activities of daily living and behaviour."
That's why it takes so long! But it's broken up into different sections, and of course the team makes allowances for the age and health of the patients - you can't test someone properly if they're upset and tired out.
The "semi-structured interview" is the part I would expect you to be invited to sit in on, as well as the history of symptoms.
Take a good book because there is a lot of sitting around :)
Has anyone suggested doing an MRI or CT scan beforehand? You will also want to take any medical notes you have, and certainly her regular px.
there or when they call her get up and go. If she says anything to you just tell her you are going. Make sure you tell the nurse every thing that is going and your concerns. While you are in there, let the Dr know what is going on whether she likes it or not. Let her get mad, just tell her you are concerned, wanting to help her and you love her.