My Mother is having VERY real memory problems...I called the...

25 answers | Last updated: Nov 06, 2016
A fellow caregiver asked...

My mother is having very real memory problems. I called the doctor's office made an appointment and talked with them asking that they do some testing. I took Mom for the appointment (however she did not want to go) and they did not do any testing. I am very concerned and do not know how to get her back to the doctor again. She is 82 and extremely healthy, no regular medications just aspirin and vitamins. How do I get her tested, any good advice?



Community Answers

Galowa answered...

 Hi

Contact your local state, county or hospital eldercare agency and ask for a referral to a social worker.  I did this, and they sent someone to the house to evaluate both the home environment and my mother's state of mind, including giving her the simple mental status tests they usually do.  (mini mental status examination)

This was the beginning of a beautiful and VERY helpful relationship.  I FINALLY had someone on my side (who also happened to be on my mother's side!)

START HERE, your social worker will reassure your mom and hold hands with each of you as you navigate your way through this scary process... TOGETHER.


A fellow caregiver answered...

Keep track of the times when your mom has memory problems on paper. Either mail, email, fax, or drop off a copy (keep the original for yourself) this list of concerns, along with any others at your mother's doctor's office for them to look at when they have a chance to give it their complete attention. Give them a few ways to contact you after they have read your concerns. Give them a week or two to respond, if not, contact them again asking them to return your call. If still no response, think about getting a more attentive doctor.


Frena answered...

When we see signs of what we think is Alzheimer's, it is really important to get the full Alzheimer's workup.

There are many conditions that look like Alzheimer's, of which about 15 percent are fixable completely. UTIs, depression, over-medication, hydrocephalus, cancer, poor sight and hearing -- all can make other people think you have Alzheimer's

Many conditions can be helped somewhat or even a lot IF we know what they really are. That's why the full Alzheimer's work-up is so essential -- it includes MRI, CTscan, blood tests, medication review and more. It is fully covered by Medicare.

Ironically, the Alzheimer's work-up is really to eliminate all the other possible causes of the dementia, so it is actually a default diagnosis, but you still want that done.

I deal with folks with dementia a lot, and i recommend being evasive as a way of getting people to the necessary doctor. Say, "Hi Mom, let's go a drive" (or something else you know will work) and drive to the doctor and go in the office, all without saying in adavance where you;re going. This very often works well.

In dementia, whatever its cause, it can be very useful not to set yourself up with difficulties. If you don't tell, they won't know to say NO. I never lie to my dementia folks, but I do evade, persuade, bribe and manipulate -- and I mean all that in a good way

The mini-mental is not an Alzheimer's test -- it only reveals a memory problem. Document carefully what you see that makes it obvious Mom is not on track, and insist on a referral for the full workup, nicely but firmly. No doctor can look at someone and know they have Alzheimer's or even dementia.

To get Mom to the doctor, YOU relax and allow plenty of time. People with dementia have great emotional radar and if you're upset, they'll get upset.

So, breathe deep and know you're doing the best thing by getting the fullest work-up done.


Frena answered...

When we see signs of what we think is Alzheimer's, it is really important to get the full Alzheimer's workup.

There are many conditions that look like Alzheimer's, of which about 15 percent are fixable completely. UTIs, depression, over-medication, hydrocephalus, cancer, poor sight and hearing -- all can make other people think you have Alzheimer's

Many conditions can be helped somewhat or even a lot IF we know what they really are. That's why the full Alzheimer's work-up is so essential -- it includes MRI, CTscan, blood tests, medication review and more. It is fully covered by Medicare.

Ironically, the Alzheimer's work-up is really to eliminate all the other possible causes of the dementia, so it is actually a default diagnosis, but you still want that done.

I deal with folks with dementia a lot, and i recommend being evasive as a way of getting people to the necessary doctor. Say, "Hi Mom, let's go a drive" (or something else you know will work) and drive to the doctor and go in the office, all without saying in adavance where you;re going. This very often works well.

In dementia, whatever its cause, it can be very useful not to set yourself up with difficulties. If you don't tell, they won't know to say NO. I never lie to my dementia folks, but I do evade, persuade, bribe and manipulate -- and I mean all that in a good way

The mini-mental is not an Alzheimer's test -- it only reveals a memory problem. Document carefully what you see that makes it obvious Mom is not on track, and insist on a referral for the full workup, nicely but firmly. No doctor can look at someone and know they have Alzheimer's or even dementia.

To get Mom to the doctor, YOU relax and allow plenty of time. People with dementia have great emotional radar and if you're upset, they'll get upset.

So, breathe deep and know you're doing the best thing by getting the fullest work-up done.


Wellwisher answered...

There is a world of difference between becoming forgetful through old age and the on-set of Dementia. Lets try to put things into perspective. You say your mum is 82yrs young and healthy in every other way apart from her memory. What things does she forget? Where she left her Keys? What she was in the middle of doing? What day it is? These are not unusual as we get older, it happens to me sometimes!If she forgets how to do practical things, forgets family members, forgets if she has just eaten etc these are the indicators that something could be amiss. However this does not necessarily mean she has dementia. It could be something simple such as a UTI (urinary tract infection). Older people often get this infection and a simple urine test can detect this. You don't mention if you care for your mum and help with her personal care if you do then it would be quite simple to check when she has gone to the toilet. A sign that an infection could be present is the colour. If it is very dark and smelly then a test should be done. You can get a sterilised container from your local chemist, take the sample to the doctors and insist it is tested! If the urine is light coloured and not smelly then this might not be the cause of her memory loss. If your mum is incontinent this sometimes makes older people reduce their fluid intake because of embarrassment. De-hydration is responsible for causing confusion so the remedy might be something simple like making sure she drinks plenty of water. Now I know this is easier said than done but there are ways round this. If you prepare her meals make sure she has a lot of water based food such as jelly, soups, add half water/milk to porridge and custards, encourage fruit juices (diluted slightly with water). Reduce the amount of cups of tea as these are a diruetic and will make her go to the toilet more often. If she does have a poor fluid intake it could also prevent her kidneys from being flushed through properly and her medication could build up. A blood test will show liver/kidney function so again if you think this may be the problem tell the doctor you want a test. If your mum's forgetfulness is causing problems from a safety point of view such as leaving the gas on, not checking water temp before bathing etc tell the doctor. If he still refuses to test, ASK HIM WHY and make sure he knows he will be held responsible by you if your mum comes to any harm. That will more than likely get her tested. I would also recommend you change your doctor to someone more sympathetic as your mum will need more support as she gets older. If you think she may be getting symptoms of dementia contact you local dementia group who will offer you support and advice. Hope this was helpful. Let us know how you got on, GOOD LUCK.


Mary lou roberts answered...

I don't know what stage my mom is either in her dementia or in the beginning or middle stages of Alzheimers. I would like to know how critical it is for her to have a work up from a doctor to determine her her Alzheimers . I feel like I would like to know but she is in denial with the disease but she knows that something is wrong. I know the doctors would help me out as they are my doctors and they would say that she has something else like a kidney problem or something minor wrong with her just to get her to the doctors. She would never know that they are doing test concerning Alzheimers. Or, should I take the route of a social worker to come over?????


Frena answered...

hey Mary Lou, the only real reason to have the alzheimer's workup is to eliminate things that really could be fixed or helped, which doesn't ironically include alzheimer's. but it does include blood circulation issues, low oxygen, mini-stroke accumulation, and sundry other health conditions, plus depression. many of these can be helped. alzheimer's, not so much.

many people dealing with this in themselves act as if they are in denial, although probably all of them know something is wrong. that's probably their fear level that stands in the way. when they feel safe in our support, kindness and acceptance, they are more able to admit what's going on.

in helping a person with alzheimer's, we help most when we just accept what they can't manage, without making an issue of things. they already know they aren't managing, they just hope we won't make an issue of it.


Mary lou roberts answered...

I like the answer as to eliminate other issues that may be going on. My mom seems very healthy as a horse but we would never know. I would like her to get closer to the acceptance area as there is no stress with me working with her right now and with reading so far what you have provided for me, I am feeling more comfortable and more secure to how I need to handle her issues. Thank you! I will get her in for a physical and let the doctor take it from there and get her checked with the alzheimer test. Thank you again. I really appreciate your site and information.


Lindadee59 answered...

What is the best Dr. to use for diagnosing Alzheimer? A nuerologist or elder care Dr or general physician. My husband feels I should have mom tested but I'm not sure if it will be helpful. The physician just prescribed Cerefluvin(?) a vitamin B supplement. She's going to take it and I'll see if it improves anything.

It's just so hard to watch the woman that took care of me and was there for me not even know what she said a few minutes ago or be so confused!


Galowa answered...

For lindadee59,

Without hesitation - I urge you to SEE A NEUROLOGIST!

If you are located near a teaching hospital, you can call the neurology department for a referral to a neurologist who SPECIALIZES in dementia and all dementia related illnesses, including Alzheimer's Disease.

These folks are the ones with the most up-to-date knowledge about the disease and available treatments. Anything less than a good neurologist could leave you feeling uncertain and even frustrated...

Trust me! (Been there, done that.)

Good luck...

Galowa

┬ęsuzannemcable.12.2.2010


Frena answered...

hey Lindadee, ask your Mom's doctor for a referral to an alzheimer' s diagnostic specialist or center. the doctor will know the resources in the area and for medicare you need that referrral. so two ways round, it works.

a general physician doesn't do the full range of complex testing that alzheimer's needs. most areas have only a few possible sources for that testing and your Mom's doctor will already know who they are.

and YES, it will be helpful no-one can know alzheimer's just by looking. confusion, forgetfulness, inability to do normal tasks of everyday living can be due to a wide variety of causes. about 15 percent of these can be completely fixed and a good percent more can be helped, once you know what they are.

So, of course you really do need to get your Mom properly checked out with the full alzheimer's workup. if she's lucky she might have that something which is fixable.

if not, she needs you to be what she was once to you. she needs you to be a sensible loving mother. she's already scared and lonely and i'm guessing so are you.

i've worked with people with dementia for 20 years. they can have as much fun in the average day as a person without. having dementia doesn't condemn people to a loveless empty life. so buck up a bit and find out what the heck IS going on with her.

best of luck! i'll be looking for more reports from you.


Cw0214 answered...

I believe the dementia is causing my mother some mild depression. She sulks a lot in her room. She doesn't want to do anything. She's not interested in anything. She has become very disagreeable and argumentative. She also feels like a fish out of water and has not settled into her new living arrangement even though it has been over 7 months since we brought her and her dog to live with me and my son.

I take her for rides and sometimes she likes it. I've taken her to things that at one time in her life she would have loved to go check out something like the local luffa farm but she's just not interested anymore.

I've mentioned this to her doctor but he did not seem too concerned. He did however, refer her to a psychotherapist., He wasn't too concerned either. It's more like you can expect more of this but there is nothing to be done. Her mood swings will probably increase he said. I know she is scared and angry that her world is changing and she doesn't really know why. She says she never wanted to be a burden to her kids but no one is saying she is or has been and I've tried to convince her that she would and has done the same for family members.

Any ideas would be welcome.

Any advice on how to cheer her up.


Jvoyageur answered...

Local hospitals are a great resource too. Call and ask if there is a Geriatric Clinic affiliated with the hospital or is there a set of specialists they can recommend for detailed dementia specific testing.

Keeping a journal of all the behaviors and events that concern you is a great way to help the doctors see what you see. It's a really help for the doctors!

Good luck.


Bart0210 answered...

My Mom is 94 years of age, in great health with no medications except an for tylenol once in awhile for arthritis pain. She has just completed a physical and her primary care physican has recommended a neurologist because of memory loss. We have just moved her to an assisted living facility to ensure her safety, good nutrition and feelings of isolation. My question is should I really put a 94 year old through a variety of neuro exams which will scare her completely. She is able to bath and dress herself but her memory loss and confusion are getting worse. Can anything really help a 94 year old?


Galowa answered...

Dear Bart... and cw...,

The first answer is for both of you.

Regarding the testing and medication for memory:

At 94, if healthy, she may have another ten years... and she should be as happy and anxiety-free as possble...

Please know that the testing IS conducted with subtlety by staff in a NEUROLOGST'S office, and the people who do the testing are warm, friendly, and reassuring enough that the process is not experienced as invasive or scary.

In the early stages of dementia (age being irrelevant!) there are numerous medications which can help a lot - Aricept, Namenda, Exelon, etc. - AND she may benefit from a low dose anti-depressant which will relieve much of her anxiety about her memory, SO... If she's healthy otherwise, I DEFINITELY say GO FOR IT!

Regarding the anxiety and depression:

Dementia is ISOLATING, depressing, frightening, and ALTERS the SELF.

If you had dementia you'd be depressed too. The solution is often a mild low-dose anti-depressant - again, you need a NEUROLOGIST here, because different anti-depressants act differently... You don't want her "over activated" and, if the drug is a bad "fit" you don't want it to be one that remains in her system wreaking havoc for weeks after you stop administering it.

For cw...

Regarding "feeling like a fish out of water":

Your mom is not LIKE a "fish out of water," - she IS ONE!!!

You love your mom, but how would you and your son like living in an "assisted living" facility surrounded by super senior citizens? !!NOT!!

What your mom needs is a PLAN - and her doctor (and probably a social worker) will need to help you set it all up... So take her to a NEUROLOGIST, then ask the office for a referral to a SOCIAL WORKER your physician has worked with in the past. You are building YOUR support network!

For her depression, SEE ABOVE...

For the belligerence, etc, the answer is usually an antipsychotic medication such as Seroquel. Although there are several drugs on the market which address this issue, they are definitely NOT one-size-fits-all. So you may need to work with her NEUROLOGIST and try a few before striking it just right.

Once these elements are "in place" you need to get her into Adult Day Care. There she will be with people her own age, people who share her dementia (and can laugh about it WITH HER,) and a trained staff with PREPARED ACTIVITIES geared toward her interests, abilities, and limitations. She may be bringing home artwork like a kindergartener's - but she'll be HAPPY.

EVERYBODY needs exercise and fresh air - so, if she's able, you or your son can spend some time with her taking her on walks.

If she's been religious - back to church! Call her church, or a local one of the same ilk, make an appointment with the pastor, rabbi, cleric, etc., and go with her for an introduction and a meet and greet. If you cannot or don't want to take her to services, use the meeting to request transport for her alone - my local Catholic church sets up what they call "mass buddies."

Around the house - check out what she CAN do (without making more work for you) and tell her it's HER JOB - making sure she knows it's NOT busywork, because "around here EVERYONE must pull their weight as long as they can." Folding laundry, vacuuming, sweeping, or dry mopping are good examples - as well as helping a grandson shovel snow or wash a car... Just keep her out of the kitchen!!!!

I'd call the above a "good start."

As always,

Galowa

;- )

┬ęsuzannemcable.2.21.2011


Laurelrod answered...

My husband and I are just beginning on this journey taking care of my mom. I guess in all honesty, it's a little frightening! She has been to a neurologist, had an MRI and is very upset with the dignosis. But knowing is half the battle! We need support and that is why I am reaching out here! Thanks so much


Galowa answered...

Hi Laurelrod,

Welcome!

First, make sure that your mother has not been to A neurologist, but to HER neurologist. The subtle difference is day and night in your caregiving journey... With A neurologist, you make an appointment when there is a problem and then go in to talk about it. With HER neurologist you can call on the phone with questions, requests for referrals, med changes etc., and eventually the relationship becomes VERY personal. I have always done this with my mom's neurologist and primary physician. This way, when I call at 4:45 weeping and desperate, they see ME or US, even without an appointment. BUILD YOUR TEAM!

As far as her fear goes, you can ease her upset a little... I've been caring for my mom over six years, and the increase in understanding of the disease has, in fact, grown substantially in that time. In many ways, Alzheimer's is slowly becoming the "new AIDS" or the "new cancer" in the sense that people are both living LONGER with this disease, AND living BETTER with it!

Much of this is due to advances in drug therapy, some is due to increased understanding of strategies for overall brain health, and a LOT of it is due to the improved caregiving which has grown out of the observations and creative problem-solving of people like US.

As with any disease, individuals respond very differently to diagnoses, symptoms, and treatments. It is up to us as caregivers to customize the available treatments to fit the needs of our own loved ones, paying close attention to which treatments work or don't work, and doggedly pursuing the next good alternative.

Pay no attention to the "Stages" many books and doctors refer to, they are as variable as the people who have this disease. A person in the early stages of the illness may have symptoms which "the charts" associate with end-stage illness. So ignore that.

Take care of yourselves and your children, if you have any. This is not an easy task you are undertaking. Make a plan now, with your mom, for an "exit strategy." You will need one if/when you reach the point where caregiving is compromising your marriage or the health of ANY individual in your household - including your mother's. Home with loved ones is not ALWAYS the best place to be. (As I write I am making arrangements for my own mother to enter residential care - for HER benefit, as well as mine...)

Best of luck to you all,

As always,

Galowa

;- )

┬ęsuzannemcable.3.29.2011


Suzabella answered...

you need to take your loved one to a neurologist for testing. they do simple question and answer testing to determine what is going on.


Frena answered...

great suggestion always. but also, Suzabella, all that simple Q&A does is to establish, yes, there is a short-term memory issue. it doesn't establish what the cause is or whether it's fixable. that's what the full alzheimer's workup is all about and it's absolutely worth doing {up to 20 percent of everyone suspected to have alzheimer's actually has a treatable, helpable and even curable condition -- from heart and oxygen issues, to tumors, medication reactions and overdoses, NPH issues and so on). it's fully covered by Medicare and there will be a diagnostic center somewhere near just about everyone in the whole usa.

the only irony about the full alzheimer's workup is that it doesn't actually establish where you have alzheimer's. it is a default diagnosis resulting from exploring every other provable possibility and finding nothing. then the diagnosis becomes "a dementia of the Alzheimer's type (DAT)".

in fact a recent report on this very website showed that forensic re-investigation of about 1600 people's autopsies showed that about half had a brain in which absolutely no sign of alzheimer's type damage could be found, in many cases not even plaquea and tangles.

so much mystery is still to be solved. that why i prefer to use the term dementia, because all alzheimer's is dementia but by no means all dementias are alzheimer's.

and i find that, as a dementia educator, more people are okay with the word and actuality of dementia who are totally freaked by the word alzheimer's. alas, we have demonized it so very much that people are afraid even to use the word.


Steel magnolias answered...

A few comments after reading the above

A neurologist may be helpful in diagnosing neuro deficits but .....

A Geriatrician, is trained and board certified and who our elderly population should be eventually funneled to ~ to co-ordinate the best health care for the elderly (My mom was going to 8 diff docs for routine care and followup NOT to mention it is a waste of healthcare dollars) Neuros think they may be able to manage the elderly ~ but unless they have the training and are up to date on caring for the elderly ~ they don't have my vote ~

BOTTOM LINE ~ educate what kind of MD is best for your parent ~ just as you did for your children ~ I would have never taken my child to a Family Practicioner (even though he may have rotated a few times through Pediacatrics)~ I preferred going to a Pediatrician who spent 3 years on the Pediatric wards and who keeps up with medical knowledge in this area

Her Geriatrician now manages all aspects of her care; her medications; her testing; etc... EXCEPT in the event she were to have some true cardiac or renal problem ~ then of course, I expect her Geriatrician to make the referral BACK to her old docs.

Insofar as testing ~ at a minimum a Neuro Psychiatric Test should be performed (if for nothing else but a baseline); a complete review of all meds; a complete history and physical; dietary habits including herbal supplements; baseline blood work and chem profiles ~ and Im sure Im overlooking a few

The big one there is MEDS ~ overmedication can cause alot of problems and mimic symptomology of other diseases ~ many times the dose needs to be adjusted or eliminated

Eventually ensure all recommended tests have are done (such as and sex dependant ~ mammos; paps; colonscopies,etc...)

Alzheimer's is a diagnosis by exclusion ~ and can not be definitively determined until autopsy (last I read).

Without tooting my own horn, Im glad I can finally give back to my mom and be here for her ~ and she is a lucky ducky she has a RN for a daughter ~ I still have some troubles dealing with all of this as it is new as I was a baby nurse not an adult nurse so I am happy I found this place.....


A fellow caregiver answered...

yes, didn't we have all this already said? plus, read the latest guidelines on recommended frequencies for testing -- much reduced from original guidelines. over-testing is almost as bad as over-medicating. over-doctoring -- now that's our real test, folks. keep up to date on newest frequency guidelines and issues of whether treatment for late-life issues is even necessary, as in late-life breast cancer and prostate cancer.


Steel magnolias answered...

Not sure what you are trying to say and assuming your response was in reply to my recent post ~

No, it had not ALL been said already ~ a quick review of the most recent posts will show that many still think a Neurologist is the best healthcare provider ~ for an aging parent with dementia

Addtionally, I saw no reference to Neuro Psych exam ~ most non invasive baseline test for memory impairment

Just because someone reaches a certain age does not mean routine screening or testing should not be done ~ nor should they be excluded from reasonable medical intervention ~

Any treatment that adds to a quality of life should be offered and performed after a thorough discussion with the patient and/or healthcare proxy or guardian


Mashkiki answered...

Every patient is different, but I too, have an extremely healthy mom who is 83 and she started experiencing short term memory loss, hallucinations and loss of sleep over the long MN winter of 2010. I had her vitamin D levels tested, MRI and we made sure she was free of urinary tract infections. We were confused as to how to help. We knew that her sleep had a great deal to do with her mental clarity, but when she was prescribed an anti-depressant (her only medication)for sleep and anxiety, we still didn't get the results we knew she needed.

We were blessed with an encounter with a kinesiologist who is a certified teacher in Brain Gym. Primarily catered to kids who suffer with ADHD,ADD, autism and other brain issues, this brain exercise program is now being used on seniors. We had a visit a week ago to teach our mom, and us, a series of brain/body exercises that work both sides of the brain. The weakness of my mother's left side of her brain was reflected in her lack of sleep, lack of order and logic and inability to live in reality (hallucination). I was at her home yesterday and she desires order again, she's been sleeping and she was even able to make her homemade chili without a recipe. If you could see where she was just weeks ago, you too would be shocked at her improvement.

I'm praying that Brain Gym is shifting her life. What we have learned about how the brain works, how both left and right brain need to be stimulated and perhaps, can even healed is mind-boggling. We're embracing every good day she has and every day she feels in control of her own life.


Pcanup answered...

There are some great suggestions here, but they aren't always practical for someone living in the mountains of western NC. My mother's doctors are scattered in many directions, most of them two hours away. They see many, many patients, and I don't think I could ever have a "personal" relationship with any of them except maybe her local general practitioner. Even she does not have email access, and I often have to wait 2 or 3 days to get return phone calls. It is very frustrating. I am finally going to get her to a neurologist soon. It normally takes about a month to get appointments.


Rosy day answered...

I so sympathize with your frustration about what to do and hope one of these answers has already helped. I ran into a similar situation with my mom, including the refusal to go to an appointment she hadn't made. The appointment was resolved by the doctors office calling the house and reminding my mother that she had missed her last 2 routine 3 month check-ups. Since she talked to the office herself, the request to schedule an appointment came as "her idea", which was important for her. While at the office I filled out a simple 15 question, Alzheimer's quiz, made available as part of an advertisement for one of the prescription meds. Answering all the questions on my own at the end of the appointment I gave it to her doctor and asked if I should be concerned with the fact that 11 of the 15 issues were yes, in my mom's case. He then scheduled the testing, and evaluation and discovered that she not only had dementia, but it was advanced. I'd tried discusing some things I was seeing with her doctor's office before and had been kinda blown off. Hope you can get to a solution soon, and good luck.