New here, just need some support

BrooklyntoCA

Hi, my mother is 95 and has progressed in probably the past year from being an active, alert, assertive and verbal person to where she now sleeps sitting on her sofa or a chair almost all day along except for meals. She is minimally interactive. No hallucinations, no wandering (she is minimally mobile with a walker). A neurologist had a video visit with her since it's really hard to transport her anywhere physically and diagnosed dementia, and he said it was Alzheimer's after trying to interact with her and seeing her walk a few steps in her walker.

She may be more aware than is apparent. When I tell her that her lunch has tomato soup which is her favorite, she laughs a bit and understands. She knew enough to ask after my own health the other day. But otherwise it is tough even getting her to engage with family photos that she used to enjoy. I feel like I've lost most of her at this point. The neurologist suggests trying the drug Donepezil which he said can slow things down or possibly increase her interactivity and alertness after 2-3 weeks.

She lives in an independent residential community which brings meals to her apartment. She has an excellent caregiver who checks in with her at 7 am, then at breakfast time, lunctime, dinnertime, and 7 pm and gets her dressed, showered, and in and out of bed. I have been there frequently (1/2 hour away from me) but now it seems there is less and less I can do. 

We are not moving her to an assisted living place at this point She is in a familiar environment, has friends that occasionally stop in to say hello, and I don't believe the level of care or risks will be any less in another place. 

Neurologist said to expect that as she declines further, she will become bedridden and may stop eating.

Is all this familiar to anyone here? I'm sure it is - would welcome any insights.

Best, Rich 

Jo C.

Hello Rich; I can well understand your concern and this appears to have happened rather rapidly.  While some persons with dementia can have such changes, what does come to the fore is that your mother has not had a full in person exam that would give far more information and lead to an accurate diagnosis.

You mention how difficult it is to get her to doctor's appointments, however; I think it would be worth making the effort - perhaps by using a wheelchair to transport her?  If she cannot transfer in and out of a car seat with assistance, there are wheelchair transports that you could follow in your own car in order to attend her appointments with her; she would absolutely need you to be with her as she would not be reliable regarding her history nor would she be able to communicate what the physician would want to impart.

First; she would need a complete health exam with a full menu of blood labs as well as ruling out a silent urinary tract infection.  There are many different conditions that mimic dementia and that is important to rule out. She should also have her current medications screened and if any of them are prescribed "as necessary," you need to see the med sheet (if a nurse dispenses the meds) to see how often they have been administered, or to count the meds in the med containers if they are self administered.  This is especially important if some meds are for anxiety, for controlling behaviors, etc.; tranquilizers and other similar meds would definitely need screening. If she must self administer her own meds or an aide is doing it, there is a possiblity that may have become problematic.

Once the physical exam workup has been accomplished, if it is negative for causation for the changes, then it is necessary to get her to a dementia specialist in person.   This cannot be shortcut; an online assessment is just  not going to do as good a job and leaves much to be desired.  There are a lot of facets to such an assessment to get best outcomes for diagnosis and treatment.  Getting an accurate diagnosis for actual type of dementia is also crucial. There are many different types of dementia of which Alzheimer's Disease is only one.  Treatment for various dementias can be different and if not accurate can make things even worse.

Your mother has a wonderful son who is her wonderful advocate; it is a blessing for her to have you in her corner.   Once you have everything in place with the assessments, then that will give you a better picture as to how to proceed.  This includes her continuing to live alone in her independent living apartment.    It is always important to have a "Plan B," in mind as sometimes there are abrupt changes we need to be able to respond to quickly.

Do let us know how things are going, we are all here in support of one another and that now includes you too.

J.

Jo C.

Here is a list of just some items/conditions that can mimic dementia:

-  Thyroid disorders

-  Disorders of heart, lung, liver, kidney

-  Metabolic disorders

-  Environmental toxicity from metals, or other substances

-  Electrolyte disordeers

-  Autoimmune Disorders

-  Diabetes

-  Alcohol use

-  Sleep disorders

-  Sleep apnea

-  Vision/Hearing problems

-  Depression

-  - Vitamin deficiencies such as D3, B12 and other B vitamins, folic acid, niacin

-  Hypercalcemia

-  Infections including UTIs which can be "silent" without symptoms

-  Normal Pressure Hydrocephalus

-  -  Medications:  both prescription AND over-the-counter: such as BP meds, antihistamines, heart mes, sedatives, asthma meds, steroids, pain pills, antidepressants, anti-anxiety meds, antibiotics 

. . . . and more

The Alzheimer's Assn. has a 24 Hour, 365 days per year Helpline that can be reached at (800) 272-3900.  If you call, ask to be transferred to a Care Consultant.  There are no fees for this service.   Consultants are highly educated Social Workers who specialize in dementia and family dynamics.  They are very supportive, have much information and can often assist us with our problem solving.

J.

BrooklyntoCA

Thanks, Jo, for both your responses! I will check in with her primary doctor (who seems quite good) and see what he thinks.