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What have you learned from your journey that you think all caregivers should know?
dj okay
Posted: Thursday, June 20, 2013 11:32 AM
Joined: 11/29/2011
Posts: 1840

This type of topic comes up from time to time, but I haven't been able to find any of the old discussions.  I am preparing a workshop on dementia at my church and would like to include some wisdom from you folks that have been there.  I want to thank you in advance for your help.  This will be good reading for all the new folks here as well.


I'll start.


I learned early in her dementia that logic and reason were no longer my friends.  She couldn't understand my reasoning and it only succeeded in frustrating both of us.


I learned the value of "loving lies".


Later on, I learned that my mother was still present at all times, although in a diminished way.  Just when I thought that I had lost all of her personality and that she was just a shell of the mother I had known, her spirit would shine through in an instant to restore my faith and encourage me for the rest of my journey.


Posted: Thursday, June 20, 2013 11:59 AM
Joined: 4/29/2012
Posts: 775

First and foremost, nonprofessional CGs need to understand that a person with AD has a terminal illness. They will never get better and will certainly get worse. 

* * *

Second, they need to prepare for many, many years of caregiving whether in the home or in a facility. No one, not even any of mom's docs, expected her to live with AD as long as she has.

Posted: Thursday, June 20, 2013 12:10 PM
Joined: 5/30/2013
Posts: 1194

Your three items would definitely top my list.  Your 3rd item is so important and I think the most often overlooked.  I think this is because caregivers often don't slow down often enough to notice. 


We are nearing the end of our journey with this disease, and the one thing I would add looking back, is don't be afraid to jump in and take charge of the situation early.  Its hard, and we want to be mindful of our loved ones feelings, but when it comes to financial matters, wills, POA's, etc.(and even living arragements), you simply have to take charge.  It may be rough in the moment, but you will save yourself so much worry and grief down the road.



Posted: Thursday, June 20, 2013 12:14 PM
Joined: 11/30/2011
Posts: 2105



It's wonderful that you are giving back and doing something meaningful for your community.  They couldn't have a better person than you.



Start gathering information on resources and help before you actually need it. 


Make a list of all the medications your loved one is taking, the dosages, when they take it and the prescription number and carry that list with you at all times.  You never know when you need to call for an ambulance or meet your loved one at the ER, this list comes in handy and the emergency personnel always appreciate it.


Take care of your loved one they way you would want to be taken care of and treated. 


Monitor your loved one closely, watch for things they are having difficulty with and make modifications where you can, i.e. difficulty with eating or remembering to eat, dressing, hygiene, driving, handling finances, difficulty with walking, using the phone.   Looking around their environment and making safety modifications for them.


Be persistent and proactive in dealing with medical professionals, care facilities, anyone and any place that is providing care to your loved one.  If you are not satisfied with the care, say something and insist on getting answers and getting concerns resolved.  Don't be afraid to ask questions, don't be afraid or hesistant to ask for something you want done for your loved one.  Go with your loved ones to doctor appointments always.  If you have concerns regarding your loved ones, fax or email the health professional a written list of your concerns days before the appointment, this helps give the health professional a heads-up, saves you from having to bring up sensitive issues in front of your loved one.


Do not be ashamed or hesistant to ask for help.  And again, gather as much help as you can get in caring for your loved one, whether it's family, friends, or hired.


Anticipate the needs of your loved one and put a plan together to meet those needs.


Try and pace yourself as best you can, it's a long journey and by pacing, I mean using as many resources as possible that you can find to help care for your loved one.


It is never too early to gather information on adult daycare centers, different types of care facilities, caregiving agencies, etc., advance directives, power of attorney, eldercare attorneys, VA benefits.


Join a support group.


Remember to take care of yourselves as well in the process.



Posted: Thursday, June 20, 2013 12:57 PM
Joined: 9/7/2012
Posts: 96

I just skimmed thru these but when I come back from picking up my LO, I will read it thru.

I was recently on a panel of caregivers. I was one husband, there was a wife, there were a set of twin (grown women) who  happen to be both pharmacists. Along with them was their 85 year old dad who came up from Florida to Long Island just to give back(needless to say it was his wife and their mom with ad)

So between all of us and a nurse who asked us pre answered questions so we were ready, there was a lot of answers and a lot of wisdom from that elderly man.

You might want to pre arrange something like this. A question and answer part of your presentation. It was the hit of the seminar.

This was an educational seminar for professional caregivers but can just as easily be done with people like ourselves. I WISH I COULD SHOW YOU THE NICE LETTER THAT WAS WRITTEN. yOU SEE EVERYONE HAD TO RATE EACH SEGMENT OF THE PROGRAM TO SEE IF IT WOULD BE REPEATED NEXT YEAR. Goodness, sorry for the caps.

There was an elder lawyer there for another segment, a man that was using music in lieu of meds to keep people calm. He used an I touch to demonstrate. I twas a very educational day along with local long term facilities and nursing homes reps and different reps from age and sickness related companies that rented table space to do their spiel and give you a sticky pad or another throw away to remember them maybe a shopping bag as well. Hope you get some ideas from this. 

Posted: Thursday, June 20, 2013 1:26 PM
Joined: 11/17/2012
Posts: 1203

Seek information and support during all stages of caregiving.
Posted: Thursday, June 20, 2013 2:08 PM
Joined: 2/28/2013
Posts: 56

I agree with so much that has already been mentioned. Bad I second, third- whatever the idea of gathering as much information as you can as soon as you can!!! For many of us we may not be the primary CG from the beginning. In our case my FIL took care of MIL and really hid as much as he could from everyone so when he got sick and all of a sudden DH and I were thrown into caring for both we had to get a very crash course indeed!!! Also making sure your LO has their Will in order including a living Will so you know their wishes. Also, we were not able to find out exactly my MIL's wishes for funeral, burial, etc so we are doing the best we know how.  If you can have a conversation about this while your LO is still able it takes pressure off worrying if you are doing right by them.
Mom's Baby
Posted: Thursday, June 20, 2013 2:09 PM
Joined: 12/19/2011
Posts: 1176

Try not to feel guilty. When your loved one loses independence or abilities, it is not YOUR fault--it is the disease's fault. You're trying to do your best to help keep that person safe, and they may not always like it. But they are past the point of understanding/comprehending your true intentions.

Realize that everyone's journey is different, and what is right for someone else may not be right for you. In other words, if placement is the option that will work best for everyone, there's no shame in that. If you have the time, energy, skills and desire to devote yourself to in-home caregiving, then do so. But don't judge yourself by what others have done.
When you have a bad day with your loved one, don't stew about it. Had a bad day or a bad visit? This too shall pass. Did you do your best today? That's all anyone can ask.

Posted: Thursday, June 20, 2013 2:34 PM
Joined: 12/15/2011
Posts: 2283

I see each of you has given a good reply along the lines of different, but helpful info on Dementia Workshops. I have attended several workshops and also been in the Dementia world for ten years.


With a workshop, any workshop, the organizers should have a pre-written plan of what topics to include as not only guides, but also to keep the Group moving in a direction. Allowing Groups to just offer singular experiences or stories as Group attendees seek time (perhaps by holding up their hand, or allowing attendees to offer contributions in-turn by their sitting placement), this type of here and there contributions will move the topics all over the place by persons inexperienced in Group participation.   ~  I sat with one Group on two occasions and was bored to no end because the organizers had all the time taken up by pre-printed program guides and singular speakers.     ~   With another Group the attendees spoke of experiences as their turn came from their seating arrangement, with the Group Leader offering very little guidance of true-Dementia experience of their own.


A  very strong contribution to a Dementia Caregiving Group should have included that the Primary Caregiver(s) not devote so much of their own time and energy to the Demented patient that the Caregiver wakes up one day to realize that they, the Caregiver(s), has no life of their own. For a Caregiver to give up their life in order to offer care and loyalty to the Demented patient is destroying two people at once. The patient will progress in Dementia anyway, no matter. The Caregiver should reserve part of their private life for their own tasks and savors. [ And BTW, I am most guilty of the latter by offering so much of my being to my wife's Dementia that I gave my life away, only to realize my mistake in my 8th year of Caregiving, then taking two years to retrieve even part of the life I had destroyed.]


Depending on the size of the Group, the planned topics for discussion may need to be scheduled for more than one session. Such things as:


Recognizing Dementia

Co-living or exchanging responsibilities with Dementia

Extended family responsibilities with a Dementia patient

Sharing and agreeing on care of Dementia patient.

Shopping and locating a Care Facility.

Pre-planning legals (Wills, POA, Bank Accounts, Property)

Division of elder parent's funding following property sale

Trusts, Guardianship, and declaring patient as " Legally Mentally unstable>"


Just to name a few.

Posted: Thursday, June 20, 2013 3:11 PM
Joined: 1/2/2013
Posts: 710

1.  Get a notebook, it can be a small steno notebook.  Keep it with you at all times and right down names, phone numbers of EVERYONE you speak with, the agency or group they are with.  Take it to all medical appointments and note date, doc's name, take notes of what s/he says.  Doctors, dentist, specialists, ALL of it. Need a repair to an appliance in the home (whether LO's home or yours if LO lives with you) put all the info in the notebook.  This book will become your chronological list of every thing that happens, and you will find it highly valuable when you need to go back and call someone to ask them about . . . whatever. 


2.  Get a file cabinet / drawer ready, and buy a box of file folders.  The amount of paperwork that comes with LO (unless you are dealing with Early Onset, then I don't know about that) is astounding.  Medicare, Social Security, Pension, bank statements, credit accounts, VA benefits statements, reports from the lab, DMV notices for license, motor vehicle tax, if LO has own home all the things that go with a house, real estate taxes, home owners insurance, electric and phone bills, cable bill, the paper alone will overwhelm you!!  And as time goes on, for Caregivers to come in while you go out for a once every 3 months night out, for Rehab stays, for ER visits, ambulance rides, hospital stays. 


3 .  Find a Caregiver Support Group near you, and GO, every meeting.

Posted: Thursday, June 20, 2013 3:40 PM
Joined: 2/14/2012
Posts: 1752

I'd like to second the fact that our loved ones are still present, even in stage 7.  We can reach them ... and if we try and are patient, they can communicate with us.


Our loved ones do not regress to childhood.  They simply have a greater tendency to pull up memories from an earlier time and to be unable tell that the memories are "old".  They are still adults, with the memories of adults, and should be treated with the respect and consideration due to adults.  They still do have recent memories.  And the more an event carries strong emotions -- of joy, of fear, of sorrow -- the more likely our loved ones will retain the memory of it.


Never assume that any new symptom is "just" due to the dementia.  It could be due to a medicine (either an acute or a chronic side effect), drug interactions, an infection, dehydration, an injury, undiagnosed and/or under-treated pain, sensory deprivation, sensory overload, etc.  When in doubt, talk to the doctor.


Keep a journal of symptoms, of treatments (prescription and OTC drugs, natural supplements, etc), and of anything that could affect symptoms, especially anything that can cause stress.  Symptoms and behaviors are affected by all sorts of different factors, and the only way to tell whether, e.g., a new drug is helping or causing a side effect is by keeping daily track of what's going on in our loved ones' lives.


Many doctors are unfamiliar with the disorders that cause dementia, don't know how to diagnose them, don't know how to treat them ... and often don't like working with dementia patients, which is understandable because there is so little that can be done for them.  Caregivers need to keep searching until they find qualified doctors who want to work with and are capable of helping their loved ones.


For a dementia patient, quality of life can be far more important than quantity of life.  Our loved ones can go on palliative care whenever they, or we, feel it is time to focus on quality of life. 


Hundreds of different factors can cause symptoms that mimic Alzheimer's.  Most of them can be treated if caught soon enough.  It is essential to have our loved ones thoroughly evaluated by a knowledgeable team of doctors.  Don't assume it's Alzheimer's just because someone is older and/or close relatives were diagnosed with AD.


Posted: Thursday, June 20, 2013 3:52 PM
Joined: 4/5/2013
Posts: 343

DJ Okay,


A stream on consciousness response. That is, totally unprioritized.


1) Even if you plan to keep your LO at home for as long as possible, start researching NHs, SNFs, and ALFs *now*. The wait list for the good ones can be two years long.


2) If your LO relies on Medicaid or Medi-Cal or other state equivalents, meet with someone (e.g. Area Council on Aging) who can explain the ins and outs of the system thoroughly, especially your rights. Many hospitals and NHs ignore patients' rights unless you are armed with knowledge.


3) If your LO relies on Medicaid etc., be prepared for denigrating statements directed at you the caregiver or your LO about lack of preparedness, laziness, blah blah blah. Develop a thick skin and anticipate this lack of caring. Those people are not worth the time of day.


4) Be prepared for disappointments in your circle of friends, people who say they will help who never do. One negative/positive aspect of being a caregiver for someone with dementia: You learn who your true friends are (and it isn't always the people you'd expect).


5) Try your darndest to cultivate good relationships with family and hold them close. Do all you can to engage them in the care of your LO. 36 Hour Day!


6) That said, be prepared to lose siblings and other "close" family members over this awful disease.


7) Lean heavily on this board for advice, counsel, a shoulder to cry on.


8]And yet, don't rely solely on this board. Caregivers tend to become too isolated and we all need real humans for real hugs and real shoulders to cry on.


9) Learn all you can about the specific form of dementia your LO has. Each type requires a unique strategy, tweaked to unique progression.


10) Be careful not to antagonize your immediate family (spouse, children, grandchildren) over care of your LO. While your LO's needs are important, the needs of the not-terminal living trump their needs.


11) Support your LO with memory crutches in the early and mid-stages. Label things, write down phone numbers and leave in multiple places. Assist with meds.


12) Recognize that in later phases, those crutches will be useless. Avoid insisting that your LO recognize the crutch; recognize that they haven't got a clue what the crutch is supposed to mean.


13) Leave out plenty of paper and pens in your LOs room. You never know what sweet notes you will find once they have died. You will find that they probably have tried to create their own crutches, and those self-made crutches will move you to tears when they are no longer around.


14) Buy a Physician's Desk Reference and learn what the meds do that your doctor prescribes. Don't be shy about challenging them on meds that are too dangerous or ineffective.


15) Grow a backbone.


16) Get your LO started in Adult Daycare while they are still "with it" enough to appreciate it. If you wait too long, the sensory stimulation will overload them. (This was a big mistake I made.)


17) Be very, very, very careful about Board & Care facilities, aka Adult Foster Homes. They usually cannot provide the medical care your LO will need, and they are not held to the same standards as NHs or SNFs.


18] Be very, very, very careful and watch for Medicare fraud. Read all those statements you receive, as dull and boring as they may be!


19) Watch for UTIs. If you live a good distance from a hospital, buy the self-test strips (Target carries them). Any sudden change in behavior, test for a UTI.


20) Get to know your local police. Take them a picture of your LO, explain his/her dementia. Even if they have a Safe Return bracelet, if your local police are aware of the issue, they are better prepared.


21) When visiting your local police, ask if you can add your LO's dementia to your 9-1-1 record, in case something happens to YOU.


22) Be prepared to answer the same question a million times. In fifteen minutes. Develop strategies for dealing with this, because it WILL wear you down.


23) Prepare a Go-Bag for the days you have to take your LO to the ER. In addition for a book for you to read, make sure you have the following: Current list of meds, and fifteen million jillion copies of the AHCD, DPOA, and the (red or hot pink) POLST. No matter how many times you give these documents to a hospital, they will ignore them or lose them or forget to consult them.


24) Prepare yourself for the long haul. This is not a short terminal disease, twelve months and funeral. It can be painfully, excruciatingly long.


25) Take good care of yourself. You're no good to your LO if they outlive you.


26) Understand that no matter how well-prepared you are for this disease, you will hit the inevitable brick wall where all your preparedness means absolutely, positively nothing. What works today is guaranteed not to work tomorrow.


27) That said, if you are NOT prepared for this disease, you will lose your mind.


28]  Learn to lie. It's good for their soul.


29) Try to learn to listen to what your LO means, not what they say. Very often their halting or mixed-up or confabulated words are actually trying to communicate something that is important to them. Don't take it lightly.


30) That said, don't take everything your LO says personally. They don't really hate you. They don't really think you are trying to steal everything. They don't really wish they were dead. They aren't really talking to their dead spouse.

Posted: Friday, June 21, 2013 8:36 AM
Joined: 12/20/2011
Posts: 78

Trust your gut !  If your asking yourself is it time


    to take away the car keys,

    get more help,

    move LO to memory care,


It is probably time.


We tend to put off making these important decisions too long.

Posted: Friday, June 21, 2013 2:46 PM
Joined: 12/7/2011
Posts: 1736

dj okay wrote:

This type of topic comes up from time to time, but I haven't been able to find any of the old discussions.  I am preparing a workshop on dementia at my church and would like to include some wisdom from you folks that have been there.  I want to thank you in advance for your help.  This will be good reading for all the new folks here as well.


I'll start.


I learned early in her dementia that logic and reason were no longer my friends.  She couldn't understand my reasoning and it only succeeded in frustrating both of us.


I learned the value of "loving lies".


Later on, I learned that my mother was still present at all times, although in a diminished way.  Just when I thought that I had lost all of her personality and that she was just a shell of the mother I had know, her spirit would shine through in an instant to restore my faith and encourage me for the rest of my journey.


Brad Smith President & Chief Executive Officer, Intuit
Advice: There Are No Make or Break Decisions



By far, the most serious danger posed in the earlier stages of the Alzheimer's disease is when the individual may decide they want to go for a walk, go searching for "home," or maybe just walk outside to get the paper. In a restaurant they may go to a rest-room. When they turn around, the place they expect to see is gone and they find themselves standing helplessly confused what they see is totally unfamiliar to them.



Posted: Friday, June 21, 2013 2:55 PM
Joined: 12/7/2011
Posts: 1736

GrandmaG wrote:

First and foremost, nonprofessional CGs need to understand that a person with AD has a terminal illness. They will never get better and will certainly get worse. 

* * *

Second, they need to prepare for many, many years of caregiving whether in the home or in a facility. No one, not even any of mom's docs, expected her to live with AD as long as she has.


I recently read a comment:  It is our hope to have her stay with us until she conquers dementia


CGs need to understand that  theirs is a lonely task. The individual with Alzheimer's may  or may not be aware they have terminal illness. caregivers learn to speak dementia as a second language

Posted: Friday, June 21, 2013 9:55 PM
Joined: 9/12/2012
Posts: 409

Please include:


Promise only that you will always love them and do your best to keep them comfortable and safe. Your love will always be there but promising to keep them in their own home or to always care for them can not always happen. This disease often needs professionals in controlled settings to keep your LO safe and comfortable.

just exhibit Love
Posted: Saturday, June 22, 2013 6:59 AM
Joined: 12/6/2011
Posts: 681

I feel I have Learned to Live in the moment...and not take one day for granted.




Love Rosie

King Boo
Posted: Saturday, June 22, 2013 10:58 AM
Joined: 1/9/2012
Posts: 3627

1.  You will need to step into a parental role far sooner than you realize; intentions to "respect" your parents old role and decision making puts them at risk. 


2.  The best answer is the one that brings comfort and accomplishes the goals of keeping them as safe and well as possible.  It doesn't have to be the truth.


3.  The disease often takes "happy" away and the caregiver needs to realize that this cannot be on their "to do " list.


4.  Take the time to find an AMAZING Certified Elder Law Attorney (CELA), primary care geriatrician.   We must delegate and pay for professional expertise for the well being of our ALZ loved ones.


5.  Plan, but try and put your energy into "Now."  Things can change on a dime, and your journey can be anywhere from a few months to decades. 

Posted: Saturday, June 22, 2013 6:22 PM
Joined: 5/29/2013
Posts: 286

I've learned, and I think all caregivers should learn, that you shouldn't count on family for help. Especially other siblings. Even if they say they will help, remember that they won't. Always rely on yourself to make the decisions because nobody else will do it.


Also, a lot of friends and family will become scarce. You will hardly ever see anybody for a visit and when they do visit, it will be a very short. It's kind of a lonely process.


Make sure to make arrangements for some kind of outside help as soon as you can. Such as respite care or something similiar. You may think you can do it alone, but I'm here to say that nobody can do it all by themselves. You will need someone else reliable to step in for you and it certainly won't be family.


Also a caregiver must understand that their loved one cannot reason any longer. They cannot keep themselves safe, make rational decisions, and they cannot understand the word "no". You cannot argue with your loved one because it will only accomplish making your loved one angry and confused.

Posted: Saturday, June 22, 2013 6:35 PM
Joined: 8/7/2012
Posts: 218

And, at the end of the day, when you are stressed out and exhausted, say a prayer for those Alzheimer patients in facilities that have nobody that visits or cares.  It will make you grateful that you are who you are - one that cares.



one daughter
Posted: Saturday, June 22, 2013 6:55 PM
Joined: 1/30/2013
Posts: 1980

Deb97 - BEAUTIFUL.Thank u
Iris L.
Posted: Sunday, June 23, 2013 3:33 PM
Joined: 12/15/2011
Posts: 18723

Speaking as a patient, I hope caregivers know that if their LO says or does things that annoy them, that it isn't a deliberate attempt to irk or manipulate them, but that the LO is functioning in a different way now.  It's not that the LO won't do better, the LO can't do better. 

My main fear/anxiety is being treated with hostility by the people I may be dependent upon because they are angry with me because I don't remember things well.

Iris L.

Posted: Sunday, June 23, 2013 4:19 PM
Joined: 11/17/2012
Posts: 1203

Iris L. wrote:
Speaking as a patient, I hope caregivers know that if their LO says or does things that annoy them, that it isn't a deliberate attempt to irk or manipulate them, but that the LO is functioning in a different way now.  It's not that the LO won't do better, the LO can't do better. 

My main fear/anxiety is being treated with hostility by the people I may be dependent upon because they are angry with me because I don't remember things well.

Iris L.

You are so right!

The adjustments need to be made by the caregivers and families, NOT the person with dementia.
My experience in some NH's has been positive, the staff are well trained in dementia care and communication. The persons are treated well. 

dj okay
Posted: Sunday, June 23, 2013 7:08 PM
Joined: 11/29/2011
Posts: 1840



I am so glad you said that.  My brother would constantly remind me that my mother was probably doing the best she could under the circumstances.  I always tried to remember that when I would get annoyed at her frequent, repeated questions or her inability to learn something new.


I will add this to my list.



Katy Girl
Posted: Sunday, June 23, 2013 7:52 PM
Joined: 12/16/2011
Posts: 138

I wholeheartedly agree with all the advice given.  I would also like to add:  don't count on siblings agreeing with your caregiving decisions or offering help or support.  I don't mean to sound negative, but I've read so much on these boards concerning unhelpful sibs. If you are going to take on the caregiving role know that you are very fortunate if others want to help but don't count on it happening. My hubby's sibs won't even call or write their mother -- even on holidays.  I've finally learned to accept that there is no one else to help care for my MIL but hubby and me and we are more than willing to provide for her.


DJ, thanks for starting this thread.  Not only will it be beneficial for your purpose, but newbies can use this information also.


Hugs to all you caregivers!

Posted: Monday, June 24, 2013 8:55 AM
Joined: 10/29/2012
Posts: 105

I would like to add that feeling grief has been the number one struggle for me.  I grieve that my mother isn't the same and that I am gradually loosing her everyday.  -Finally, at the age of 99, I had to place my mom in assisted living. 

I found the most helpful tool for me was my early journaling.  Every time I feel grief about placing my mom, I re-read my journals and this  makes everything clear to me that I could no longer care for her as I work full time and we have no family members to help us.

I would also say that remembering all the good times we had together in the past are wonderful memories and I started a picture album of my mother, dad and myself that dates back to the 1940's to the present. I take photos of my mom in her assisted living, especially at her 100th birthday party that the facility gave to her to honor her.  When I look at the pictures of my mother's earliest days to now I say to myself "My mother had a wonderful life, she was extremely healthy, traveled and loved every day of her life always thinking good thoughts."

Also, I wrote a short novel about my mother's life and had it self published.  I have this novel as a memory also and it honors my mother.

Johanna C.
Posted: Monday, June 24, 2013 12:30 PM
Joined: 12/9/2011
Posts: 13693

So much has already been mentioned, here's a few more:


1.  Try to remember, if your Loved One is driving you to absolute distraction; imagine what it must be like to live inside their heads, FEELING all that agitation, upset and fury and believing all those horrible delusions (rigid false beliefs) as truth.  It is a hellish existence for them and unconscionable to let it continue when there is help to be had.  Getting a dementia expert early in the course of the disease is a necessity on several fronts.


2.  Always have a, "Plan B;" that is, a well researched and well thought out plan of what you will do IF something unforeseen abruptly happens.  This can happen and does happen.  So; if you have researched local ALFs as well as local NHs and Care Agencies prior to need, then if the abrupt unforeseen event arises, physical or dementia, you will be prepared and not have to run hither and thither under tremendous pressure and time constraints.  It will also help you to know the quality of such facilities and that will benefit your LO.


3.  The person with dementia is MORE than their dementia.  They, just like us, have multiple body systems.  They, just like us, will develop illnesses and conditions totally unconnected to their dementia.  Always honor this and ensure that the LO is screened for other conditions outside the dementia when they begin to exhibit symptoms.  Do not ascribe, or permit doctors to ascribe all changes and symptoms to dementia alone.


4.  When our LOs have delusions and confabulate making up so many stories; it can be exhausting and a bit unnerving; BUT always err on the side of caution and check things out that they tell you, because there will be times when what they are saying is not a delusion, but actual truth.  Respect this and do your due diligence and check things out.  I learned this the hard way.


5.  If your LO is alert, and their friends (and even relatives) no longer call or send cards; buy a stack of "thinking of you" cards and mail a couple now and then, and sign someone else's name to it.  On birthdays, send six or eight birthday cards sent from other friends or relatives (who you know will not do this), and you will find your LO so delighted and happy.  If in the NH, put the cards on the bulletin board or tape them to the closet door, so your LO can see the bright colors and if capable of doing it, can show others what they have.


6.  Try to remember, that if your LO who verbally abuses you was in her/his "right mind," they would be horrified to see how they were behaving and that they do love you; so try and forgive the dread behaviors and verbal abuse they may demonstrate toward you now that their brains are, "broken" and severely compromised.  They cannot help what they do.


7.  Therapeutic fibs, (fiblets) are indeed ethical.  They are an honorable and respected tool in the caregiver's tool box.  Using such fiblets is an actual kindness that permits us to provide care, get them to medical care, dispense medication and get things done without causing them to have meltdowns, upset and agitation. 


8.  ALWAYS go the doctor's office and into the exam room with your LO; they will be poor historians, minimize their conditions and never accurately report what the doctor said.  In order not to have to talk about your LO in front of them about their behaviors, you can write a detailed memo outlining changes and concerns and either fax it to the doctor a couple days prior to the appointment, or bring it with you and have staff give it to the doctor and ask him/her to read it BEFORE he/she goes into the exam room.


9.  And as others here have said, get those DPOAs for Healthcare and for Finance.  Get a HIPAA Waiver signed so the doctor can share medical information with you, and most of all; get your name on all your LOs bank and financial accounts.  This will save you from severe problems as the disease moves forward.  Banks do not always honor the Financial DPOA, and it is best to get this done as early as possible.  You will then be a co-owner on the account and an make adjustments, etc. as the need arises without hours of difficulty. 


10.  Get organized with files.  Make new files for each calendar year.  File ALL LO related receipts, bills, etc., that you have paid.  Make a file for each item or category that you paid on behalf of your LO including household items, doctors, hospital, ambulance, NH, medications, etc.  Then each and every month, use the checkbook register and bank statements to put together a Financial Accounting Report.  You will be able to then find everything at a moment's notice and if you are ever questioned, you will have the files and reports to back yourself up.  I also sent a copy of each month's Financial Accounting Report to each adult sibling to keep everything transparent and for them to see the cost of living items.


1l.  Learn to stand up to doctors and other healthcare professionals when they are either inappropriate, or non-caring, ignoring or shirking.  They are just people and if you feel their services are not in-line with your LOs symptoms or needs, speak up . . . you are now the advocate and the voice of your LO who can no longer speak for themselves.


12.  If your LO is developing a fixation on wearing certain clothing items, catch on early and from then on, buy two of everything.  That way, you can sneak the dirty garment for the wash and leave the second clean matching garment.  This will avoid many meltdowns in such a situation.  AND do buy a spare pair of eyeglasses to keep on hand.  I found this valuable as glasses get lost in the hospital and in the NHs.  Better safe than sorry on that front.


13.  Learn early, that it costs you absolutely nothing to bite your tongue and agree with your LO or not challenge your LO no matter how wrong they are about something.  Learn to never, ever argue, never to try and explain their incorrectness, you can not educate . . . just validate their FEELINGS and not their words and then refocus them . . . you will both be better for it.


14.  When there is a sudden moment of clearing of dementia, or a sudden loving moment  or a moment of re-connection; take this as a gift, because it IS a gift.


15.  Incontinence is the primary reason most LOs are placed in a facility.  Try to get a handle on this issue early and set up the incontinence supplies, do the every two hours in the bathroom training and getting things set up to deal with this as easily as possible and it will benefit both of you.


16.  Remember that medications can act alone or in concert with another to cause problems both physical or psychological.  This can happen when first starting a drug or can happen after taking the drug for a long while.  Drugs need to be screened by the doctors each visit and at each problem.  Acquaint yourself with each and every prescription and all side effects by going to a valid site like, www.rxlist.com and reading the side effects. 


17.  If your LO suddenly has profound behavioral issues and heightened irritability and even agitation, you may want to have her/him checked for a "silent" urinary tract infection.  These UTIs are called, "silent," because they have no physical symptoms; what often happens, is a sudden ramping up of profoundly negative behaviors and they are really problematic.  Once the infections is treated, the person usually returns to baseline function.  This is a frequent issue for many caregivers LOs and in some, happens often.


18.  Take care of yourself.  Develop a relationship with a "companion" person or aide who can come in either routinely or when you call so you can get some breaks for yourself.  This is a necessity and will serve you well.


19.  Keep a log on the computer or in writing.  It is astonishing how often we must remember things that happened, outcomes of doctor's visits, onset of change in condition or behavioral issues, etc. and having a dated log will really help.  This is another one of those things I learned to do the hard way.


I will stop for now, I am sure I have forgotten other items, if I think of them, I will jot them down.


Doing something like this at church is a great outreach.  AND if any of you cannot find a support group and are churched, you can actually request the church sponsor a support group for caregivers.  I did this and it was highly successful . . . . we got funded to hire an experienced Social Worker who knew dementia to facilitate the group and we advertised in the local paper and Chamber of Commerce Newsletter that goes out to all homes in our town - this was at no cost, and the church secretary took registration names and phone numbers and it all turned out very well.  We ran our group in the evening in one of the church meeting rooms to accommodate working caregivers and caregivers who could not get away in the daytime.


Great list - I love the suggestions.


Johanna C.

Johanna C.
Posted: Monday, June 24, 2013 3:21 PM
Joined: 12/9/2011
Posts: 13693

I forgot - when conducting financial business for your LO, NEVER,EVER co-mingle you checking and savings with theirs.  Your LO should have their own checking and savings, etc. and you can be co-owner on it; but you should never put their money in your account or yours in theirs.


Also, try not to use a credit card, but if you must such a for mail order prescriptions or online purchase of incontinent supplies, try and use your parent's credit card and never, ever use it for your own personal use.  Be sure and keep the credit card statements in that file system we have discussed.


If you co-mingle funds, and then you are being questioned, you will not be able to easily demonstrate or defend what you have been doing.


Oh yes; though it sounds rather odd, do run a credit check on your LO at all three credit bureaus.  I was amazed to find out my mother had SIXTEEN credit accounts open, plus some errors on the report.


You can "freeze" the accounts for a small fee in that no one can go in and open an account, etc.; so that is a good thing to do.


Also, when I closed the accounts, I was told by each account company, that I would need to send a full copy of my DPOA for Finance to each one of them and it would take two months or so to completely process the account - SO; what I did was to call the accounts back at  a later time and used my mother's name and said I wanted to close the accounts . . . . of course I had her social security number, her mother's maiden name and the account number and they closed the accounts right on the spot; no fuss no muss.


I also requested of the bank and ALL account companies - Mom's credit card as well as the accounts I was closing NOT to send any applications for future accounts nor any advertising whatsoever.  To my surprise, this was honored.


Johanna C.

Posted: Wednesday, June 26, 2013 1:12 PM
Joined: 6/3/2013
Posts: 58

These were some things that worked for us during different stages.


#1) While MIL still lived in her own home we learned to tape over things she didn't need to use. She kept changing the channel on the TV to "snow" and couldn't figure out how to change it back. We discovered she would sit for hours in silence because she couldn't fix it. We used medical tape (it removes easily) to cover all the buttons except volume, channel and the on/off. That way she couldn't hit the input or any other crazy button. We also taped over all buttons on the microwave except the start button. She could hit it and get 30 sec at a time to warm food. Eventually we had to put a green yard sale sticker on it to make it an easier target for her. Same with the coffee maker. We would set up the water and grounds the night before and taped over everything but the start button. We put a green sticker on it and when she would get up in the morning she could start her coffee.Eventually we began setting the coffee maker to come on every morning at the same time. This helped her keep a schedule when her mind was starting to wander away from one. The smell of the coffee woke her up and she started her day.We eventually had to cover all the buttons on her phone except the answer and hang up buttons. We colored green for answer, red for hang up.


#2) We fixed plates of food that were easy to warm and eat. Use the divided lunch plates with the lid. We marked them "lunch Monday", etc. This worked for several weeks and bought us time on having to go up at meal time (before she moved in with us).


#3) We began to label everything for her. Snacks were put on a tray on the kitchen table and labeled "snack tray". This would encourage her to eat during the day.


#4) When MIL began to have trouble differentiating between day/night our daughter drew a sun on yellow paper and a moon on blue paper and glued them together. We set them up in a stand and every morning we turned the yellow side out and at night we turned the blue side out. This worked for a while but not forever. Eventually they just can't logically decide if it's day or night, even if they're looking out the window at a dark sky with stars in it.


#5) Our best friend became a locking medicine box from alzheimers.com. It had a locking slide door and could be set to go off at any time you desired. When it's time for meds it sounds an alarm that goes off for two hours or until the door is opened and a red light will flash on it until the meds are taken. This worked for us for a year, right up to her death almost. Before the box , when MIL would get upset she would take a weeks worth of meds or not take them at all. This kept her on a schedule and gave her a reminder to take them on time.


#6) We also got a clock from alzheimers.com that had the days of the week instead of the time. She could look at it and know it was Monday. Alzheimers.com has a lot of other cool things that might help you and your specific needs.


#7) After we moved MIL into our home we quickly found that we needed video cams for her safety. We were running up and down the steps to her apartment a zillion times to check on her. Instead of an expensive security system we got on amazon.com and bought the video baby monitors they have now. We got three cameras that covered the whole apartment and our end was a monitor screen that let us see her in action in real time and hear her through the speaker in the monitor. This helped us know if she was just sitting and watching TV or up rambling through her belongings or roaming in the night, etc. It was a lifesaver and probably the best investment we made for her safety and our sanity.


# The first week MIL lived with us she got out and fell on the patio in the middle of the night. Even though she was terrified before of the dark and being outside, her brain overrode the reasons she had to be afraid and she wanted to go out "with her friends" outside. It was a sliding glass door we used and we bought a device from Lowe's that allowed you to drill a small hole in the top of the door and insert a pin that would lock the door. This was all done when she wasn't looking or she would have learned our secret and let herself out again.


#9) What some of the others said about being disappointed by friends and family is true, unfortunately. We had many who said "call me". We had a situation that needed both mine and my husband's attention one evening. I called everybody I knew who said "call me". MIL was having a good day and we asked if somebody could stay with her for a couple of hours. This list included MIL's own sister, who was too tired at the time (her words). Everybody said no. One friend said she wasn't comfortable staying with MIL (even though she previously said she was) but she would help in another way if she could. My MIL wasn't their responsibility but my advice to anyone is, don't offer the help if you won't be comfortable following through. Be specific about what you can do. This was the only time in all our time we asked for help because it was a situation that truly needed our attention. We weren't users or abusers when asking for help because we never asked. What astounded us was, when people realized MIL was dying, they began to come out of the woodwork. These were people who knew before how desperate we were for a few hours off but weren't there until it was almost over.Be prepared for this possibility.


Hope these tips help. They're from a more mechanical aspect of things instead of the emotional part of it but we found them so very useful to our survival and her care.





Posted: Wednesday, June 26, 2013 1:16 PM
Joined: 6/3/2013
Posts: 58

Not sure how number eight is a smiley face. I don't even know how to make those. Sorry bout that!
Posted: Wednesday, June 26, 2013 1:23 PM
Joined: 2/14/2012
Posts: 1752

learningeveryday wrote:
Not sure how number eight is a smiley face. I don't even know how to make those. Sorry bout that!


The software automatically turns:


  8 )




You need to, sigh, put a space before " ) " to get it to stop doing that.

Posted: Wednesday, June 26, 2013 1:52 PM
Joined: 6/3/2013
Posts: 58

Add #10) If your LO is living with you, don't use your favorite scents of air freshener, febreeze, deodorizers, etc. It may not be a problem for others but for my husband, as soon as MIL passed he wanted her apartment cleaned up. She died there and he wanted the hospital equipment out asap and the reminders cleaned up. We did this but every time you went into the apartment it was like being slapped in the face with the familiar scents. It reminded us both of the incontinence, the long nights, the hospice visits. While there were still some good moments to be had, scent is a very strong trigger to some and brings back all sorts of memories. My daughter and I threw out the old cleaners, bought new febreeze and cleaners and deodorizers and I think we have reached a point where the bad memories don't hit us every time we walk in.
Posted: Wednesday, June 26, 2013 1:54 PM
Joined: 6/3/2013
Posts: 58

See, I really do learn something new every day. Thanks for the tip.
Posted: Wednesday, June 26, 2013 2:27 PM
Joined: 8/27/2012
Posts: 61

Don't be afraid to follow common-sense knowledge, or "gut" feeling information over seemingly "sound" advice. If something doesn't sound/feel/look right keeping digging and relying on your sense of "right". Alzheimer's is a disease where there are more mysteries than answers.
dj okay
Posted: Wednesday, June 26, 2013 3:09 PM
Joined: 11/29/2011
Posts: 1840

I want to thank everyone that contributed to this wonderful discussion.  The workshop was last night and it went very well.  Your lessons learned were a large  part of the material I presented.  I sorted it into categories for a more cohesive presentation.


This discussion can continue to grow with new thoughts from those that have learned something new.  I think these tips are invaluable to new members.

Thanks again, everyone!

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