Frequently Asked Questions at alt.support.alzheimers

You must consult a medical professional to help you determine what is best for you and
your Loved One.  We are just signposts on this road, here to point you in the right direction.
The First Signs
Family and good friends may not notice but impaired memory, judgment and hygiene;  lethargy, delusions and paranoia could be warnings.  In the early stages  your Loved Ones may be very good at hiding the truth, from friends, family, you, and even from themselves.  If you think something's wrong, something very well may be.

Ten Warning Signs http://www.alz.org/AboutAD/10Signs.htm

Alzheimer’s or
  Something Else

or jump down to:
Legal Issues
Argue or Go Along
Driving
Expectations
Caring for the Caregiver
Caring From a Distance
Behavioral Problems
Incontinence
Day Care
Nursing Homes
    & Assisted Living
Traveling
End Stages
You know your Loved One best and if you're worried it's extremely important to get a thorough evaluation by a physician familiar with geriatric and neurological disorders.  The Alzheimer's Association is a good place to go for referrals.  It may not be Alzheimer's.  More importantly, it may be treatable.  Do whatever it takes to get a proper diagnoses.  You may think you've met the immovable object.  You must become the irresistible force.  Most of the treatments available for Alzheimer's work much better in the earliest stages.  Not to mention, there's a lot you need to prepare for and the sooner started the sooner prepared.  You may never be done.

How Do I Convince My Father to Seek Help? by Mary Gordon
Visiting Physicians Association (U.S. only & geographically limited) www.visitingphysicians.com
 A.M.A. Doctor Search http://www.ama-assn.org/aps/amahg.htm
 Diagnostic Criteria http://www.mayo.edu/geriatrics-rst/ADdx.html
 Also, on our Links page, see Dementias.

Legal Issues
Use every means at your disposal to have your Loved One help get the paper work done before the disease progresses.  You will be handling everything, sooner than you'd like.  You'll need access to medical and financial records, real estate, Power of Attorney, Medical Directives and, possibly, Do Not Resuscitate orders.  The requirements vary country to country but the hassle doesn't.  Consult an attorney well versed in Elder Law.  Use all your powers of persuasion because this is going to help or haunt you for a long time.  Don't let it go until your Loved One can't help or express preferences.  You could be trapped by guilt, or worse, the legal system, maybe loosing what little control you have, even the care of your Loved One.  A worst case scenario, perhaps, but one to avoid with all your might.

Go to our Links page and see Legal References.

Argue or
  Go Along

Call them Loving Deceptions if you will but a gentle lie can be an effective resource.  Keeping our Loved Ones safe and diminishing anxiety are the goals.  If a lie is more comforting than the truth then it's a Loving Deception and will help achieve those goals.  Safety is the main issue and arguing with an Alzheimer's afflicted Loved One can only frustrate everybody and will solve nothing.  Go along, redirect, or remove the source of conflict if you can.  A Loving Deception may be just what's called for.

True Lies or True Love? by Pam Pomo
Loving Deceptions http://neuro-oas.mgh.harvard.edu/sea/SEADwebManage.html#Deceptions
 New Technique http://my.webmd.com/living_better_content/emo/article/1728.60257
 Use Empathy http://agnews.tamu.edu/stories/CFAM/Oct2799a.htm

Driving
Giving up driving privileges may be the first hardest thing your Loved One has to do.  Insist that the doctor take some responsibility.  Having a "prescription" may help to reinforce this necessity.  Imagine your Loved One driving down the road at you or at a child on a bicycle.  Disable the car -not maybe, not later- go outside and do it now.

When Driving Becomes an Issue http://www.mayohealth.org/home?id=HO00046
 When You Are Concerned http://aging.state.ny.us/caring/concerned/index.htm
Expectations
There are no pat answers, no clear cut stages, only guides to help us understand "normal" and even if there is such a thing.  The time frame can vary by years from patient to patient.  The only sure thing is that it will get worse.  But you can enjoy your Loved One.  Be patient and just decide that most things aren't all that important.

Reality Sets In by Mary Gordon
The "Stages" Index http://www.zarcrom.com/users/alzheimers/st-index.html
Stages for Caregivers & Loved Ones by EdithAnn http://www.agelessdesign.com/EdythAnnStages.htm

Caring for
  the Caregiver

Who will take care of your Loved One if something happens to you?  The stress of caring should not be born alone.  Arrange for someone to take over for you if you become ill.  Get all the help you can and marshal your resources.  You're in it for the long haul and Things Change.

Caregivers' Bill of Rights http://www.geocities.com/asanewsgroup/asa-bill_of_rights.html
Greater Risk of Death http://www.alzheimersupport.com/library/showarticle.cfm?ID=1095
 Coping With Caregiver Grief http://www.intelihealth.com/IH/ihtIH/WSIHW000/9030/9314.html
Could You Be a Stressed Out Caregiver? http://www.caregiving.com/yourcare/html/stresstest.htm
Home Care Locator http://www.nahc.org/Tango/HClocator/locator.html
Also, on our Links page, see Care Aides.
Caring From
  a Distance
If you're far away from your Loved One, it's hard to know what to do.  Your primary role may be as support for the primary caregiver.  A sympathetic ear, a sane voice in the wilds, simple contact with reality may be all that's needed.  Listen carefully for clues though.  Primary caregivers may be reluctant to accept help, particularly if the role is new to them.  They may feel the need to do it all for a variety of reasons.  Encourage them to take advantage of services.  You can find out what support is available and even arrange for it from afar.  Check in often to monitor conditions.  We don't know much but we do know Things Change.

Long-Distance Caregiving http://www.alz.org/FamCare/DaytoDay/Longdistancecaregiving.htm
The Eldercare Locator http://www.aoa.gov/elderpage/locator.html
Meals on Wheels http://www.projectmeal.org
Geriatric Care Managers http://www.caremanager.org
 Also, on our Links page, see Care Aids.
Behavioral
  Challenges
 Bathing
Boredom
Eating
Sleeping
Sundowning &
    Wandering
Behavioral problems may be caused by pain or infection or something else.  You mustn't assume all problems are a result of the dementia.  Watch closely for any clues.  A common cause of pain is urinary tract infection.  It's very important that your Loved One get plenty of fluids.  Check for fever, skin irritation, and muscle or bone soreness.  Keep finger and toe nails trimmed short to avoid scratching and to avoid ingrowths, which can be very painful.

Recognizing Pain in the Person with Dementia
Also, on our Links page, see Behavioral Challenges.

Bathing
Bathing is a complex series of actions that may be very daunting to our Loved Ones.  Falling is also a very real fear.  The temperature of the room and water must be comfortable for the bather, which for you as helper may mean an uncomfortably warm room.  Get a tub bench to assist entering and exiting the tub, or a shower seat so your Loved One won't be physically taxed by standing the whole time.  These devices will also decrease the risk of falling.  There may be a modesty issue as well.  Be aloof and have robes and towels ready.  Discussing it may just cause more anxiety.  Have soap, tear-free shampoo, whatever else you'll need at hand and say, "let's go."  If that doesn't work try again in a little while.

(These next two links do not imply endorsement, only examples for your information.)
Shower Seat http://www.adlmedicalsupply.com/medecat/rs/ecatalog/details.asp?productid=1188D
Transfer Bench http://www.adlmedicalsupply.com/medecat/rs/ecatalog/details.asp?productid=B158
Also, on our Links page, see Bathing.

Boredom
Combating boredom while maintaining a routine and stable environment is a challenge.  Without short term memory our Loved Ones forget a fun time in moments and have little anticipation of the future.  Reminisce about recent events and about good things from the past that are remembered.  Talk of fun things to come.  Find tasks your Loved One can do to feel useful but don't tax increasing limitations.  Your Loved One needs stimulation to be tired and reassurance to relax so you both get a good night's sleep.

101 Things to Do http://www.ec-online.net/Knowledge/Articles/101things.html

Eating: Too Much or Too Little
Eating from boredom is something we've probably all done and anxiety can easily cause loss of appetite.  If your Loved One won't eat enough, it may be that eating utensils are too difficult to handle so try finger food.  If your Loved one eats too much maybe it's the wrong kinds of food.  Smaller meals more often may be a solution for eating too much and eating too little.  Medications may increase or decrease appetite as well.  Food can be a real source of consternation.  Keep experimenting and hope something works.

Nutrition http://www.nncf.unl.edu/alz/manual/sec5/nutrition.html
Also, on our Links page, see Eating.

Sleeping
Noise, light, nightmares, confusion, drugs, boredom, hunger...  There seem to be endless reasons why your Loved One may not be sleeping.  Maybe a warm bath, a warm beverage, or a snack will help your Loved One relax.  Is there enough stimulation during the day, or too many naps?  Are evenings quiet and relaxing?  Sleeping in a recliner may feel less permanent or confining, allowing your Loved One to rest.  Maybe you're worried because your Loved One sleeps too much.  This could be a sign of depression, boredom, or illness.  Talk to the doctor to rule out or treat any illness or depression.  Your Loved One may just be worn out by constant confusion or hibernating from the winter of this disease.  If your Loved One's getting some exercise and nutritional needs are met, there are certainly worse things to do than sleep.

Also, on our Links page, see Sleep.

Sundowning & Wandering
You won't know if or when your Loved One will begin wandering.  Chances are it will happen, especially with Sundowning.  Another first thing you should do is register with  the Safe Return program.  Apparently there are no similar international programs but local police and fire departments may have registries and should certainly be notified of your Loved One's condition in case of emergency.  You might try deterrents -stop signs, dark mats, locks where people wouldn't ordinarily look, knob muffs, alarms- but these work only to a point.  Nothing's a sure bet.  Your Loved One may be impaired but that's not the same thing as stupid so be alert.  Wandering may just be something Alzheimer's afflicted people need to do.  Setting up a familiar, safe, escape-proof  "wander path" and just letting your Loved One go may even help.

Also, on our Links page, see Electronics & Sundowning & Wandering.

Conclusion?
Not likely.  The one best all around thing may be routine, if you can establish it.  There could be so many reasons for the odd behaviors our Loved Ones display.  We do our best to figure it out and treat it when possible but we can't always know and there may be nothing to do but wait.  This too, shall pass.

Incontinence
Dealing with incontinence is a major hurdle and a primary reason for moving Loved Ones to institutional care settings.  It doesn't have to be so.  There's nothing intentional or shameful about your Loved One's incontinence.  Make the needed adjustments, both emotionally and by way of real preparation.  You'll be able to relax a little and your Loved One will actually retain more dignity than not.  You can't stop it but you can protect your Loved One and your furnishings.  Pads, diapers, powders, gels, odor neutralizers:  There's a variety of incontinence products available which will help more than all the "experts" in the world.  You must be wary of urinary tract infections.  Your Loved One may be unable to sense or communicate problems to you the same way so, initially, you'll want to check with the doctor, and check again when you see any change or discomfort in your Loved One.

Been There, Tried it, Didn't Work! http://www.bigtreemurphy.com/been_there.htm
Also, on our Links page, see Incontinence.
Day Care
 though you'll 
want to call it 
something else.
Adult Alzheimer's specific day care may enable your Loved One to remain more independent and stay with you much longer than otherwise possible.  Professionals who are familiar with Alzheimer's will encourage exercise and activity tailored to special needs.  It may be best to start fairly early on, to allow the habit to develop.  This could be a good time to polish those Loving Deception skills to get your Loved One properly motivated.  Expect it to take several visits before you and your Loved One adjust.  Quite possibly, day care will be another of the best things you do, for both of you. Don't minimize the importance of time off for yourself.  Your Loved One will be safe and there's a lot you can get done in the hours you have free, like sleep!  The center may even provide transportation.  This is a service you may not be able to do without.  Your local Alzheimer's Association should be able to direct you to local day care centers.

Find an Adult Day Center http://www.nadsa.org/findacenter.htm
Easter Seals Adult Day Care Services (in some States) http://www.easter-seals.org/services/adult.asp
Nursing Homes
  & Assisted
      Living
Nursing homes have changed enormously from past generations.  The advent of assisted living facilities has opened a whole new world of care options.  Government  regulation has worked to create more hospitable environments and helps maintain certain standards.  This is not to say that you can be casual in your approach to choosing a home.  There are questions you need to ask and there are always problems.  Not every place will be suitable for your family and you still, always, need to watch out because Things Change.  Your local Alzheimer's Association should be able to refer you to appropriate facilities.  Some directories and nursing home reports are available online.  For assisted living reports you'll need to call your ombudsman or local equivalent.

Also, on our Links page, see Nursing Homes & Assisted Living.

Traveling
It is possible to travel with your Loved One but you'll want to be very organized.  Think of everything then remember what you've forgotten.  Go on picnics or to museums near home, even overnight to nearby family or friends.  These "trial runs" may be the easiest way to find out if you're both even up for the disruption.  Carry current photos of your Loved One with you and have your Loved One wear an ID bracelet, perhaps even carry an itinerary in a pocket so if you do get separated you may be reunited more swiftly.  Be prepared to abandon your plans if your Loved One becomes overanxious.  However well you manage, it won't be a vacation.

Traveling With An AD Person http://www.zarcrom.com/users/alzheimers/t13.html

End Stages
Alzheimer's affects different parts of the brain so the warnings and actual cause of death will differ for each person.  Functions begin to shut down.  Appetite and interest may decrease or stop altogether.  Quite often, pneumonia is the “cause” of death.  Your Loved One’s swallowing or respiratory capabilities may become seriously impaired as the disease progresses, causing lung irritation.  The debate still goes on but most experienced professionals have come to agree that tube feeding is not beneficial for Alzheimer's and dementia afflicted Loved Ones, and it’s terribly uncomfortable.  Active interventions, including tubes, antibiotics, and transfusions, don’t prolong life at this point.  They prolong dying.  We can’t stop the process.  Comfort may be all we should offer.  There are hospice organizations in just about every country.  They provide support and counseling and will help gather available resources, which may cost nothing depending on your own finances.   Take advantage of all the help you can find.  This is no time for you or your Loved One to be alone.

Hard Choices for Loving People Reverend Hank Dunn http://www.nerds.net/aapublishers/ Living Wills and Artificial Means of Saving Lives by an unknown visitor to a.s.a
Also, on our Links page, see End Stages.

 

 

 

Revised: 12 Feb 2003 or thereabout.