The Holiday Visit

December 29, 2010

A friend of mine, Kate, e-mailed me Christmas Day about her mother-in-law, Lily, whom Kate has suspected for some time has memory issues.  These became especially apparent when Kate, her husband and the rest of the family visited for Christmas.  Here are some excepts from Kate’s e-mail:

My 81-year-old mother-in-law is losing it.  She can’t remember anything. For months, everyone was making excuses, but today when she couldn’t figure out how to use her washing machine, everyone saw the issue.  She admits she has a problem, but won’t call to make a doctor’s appointment.  She has even developed her own language now with all the replacement words and bizarre pronunciations! My father-in-law is physically in bad shape, so he can’t really help.  My husband wants me to handle everything, as does one of his brothers, as I am very close to Lily.  The other brother is in denial.  Could this be normal cognitive decline?  What should we do?

If this describes any part of your holiday travel this year, you’re not alone.  Often, a loved one’s memory issues are revealed during holiday visits.  Over the phone, those with dementia can often cover their memory issues through something doctors call the “social facade.”  However, when dementia patients are faced with things that confuse their routine and make their lives more complicated — a house full of company, large meals to cook, meat to grill, turkeys to carve, an unfamiliar environment, etc. — cognitive problems are revealed in ways that even the most fervently denying family member must recognize.

Here is my advice for Kate and her family:

First of all, don’t expect Lily to call and make her own appointment with her physician.
Lily may not have enough cognitive ability left to do this.  My father-in-law lost his ability to read and write very early in the disease process (although oddly enough, he retained his ability to spell aloud).  Even if she can read and write, looking up a phone number alphabetically and retaining it long enough to dial the number is actually a very complicated process.   She may not be able to do this.

In Lily’s case, she admits she has memory problems.  However, admitting it and being brave enough to call the doctor for an appointment (which may result in a diagnosis of Alzheimer’s disease), are two different things.  At this point since Kate’s husband and one of his brothers agree that Kate should take charge, I recommend she call the doctor, make the appointment and accompany Lily for the visit.  If the primary care doctor isn’t very knowledgeable about dementia care, Kate should ask for a referral to a gerontologist or neurologist.  Also, I recommended they request a neuro-psychiatric profile, which helps determine if depression plays any part in Lily’s dementia.  Lily is caregiver to an invalid husband, a difficult and sometimes depressing job, so the likelihood that depression plays a role is increased.

One more very important test which the physician should order is a driving evaluation by an occupational therapist.  Lily may be a danger to herself and others when behind the wheel.  If Lily’s keys should be taken away, the physician should be the one to do it with the family in attendance.

Next, I recommended Kate and the family members educate themselves about dementia (see the resources suggested on this website).

Legal issues:  What are the legal arrangements for Lily if she is impaired?  Does she have a living will?  Has she given someone have power of attorney, healthcare power of attorney, etc.? Someone (or more than one person) needs to be delegated this power while Lily is still able to do it.  I recommend the family visit an attorney in the state where Lily lives who is an expert in elder law.

I do NOT recommend a spinal tap or other highly invasive procedures to confirm a diagnosis of Alzheimer’s disease. A good clinician can be greater than 95% sure they are dealing with Alzheimer’s disease without a spinal tap.  Given that the physician had already ruled out other causes for dementia (depression, B12 deficiency, blood sugar issues, etc.) through MRI, simple blood tests and the neuro-psychiatric profile, the treatment options won’t change significantly even if Lily does not technically have Alzheimer’s disease.

Cut the brother who is in denial some slack. I have never met a family member of a dementia patient who has not been through denial at some point, and I’m including myself in that group.  Given Lily’s condition, he won’t be able to stay in denial too much longer.  If Lily does receive an Alzheimer’s diagnosis, Kate and her husband will have to have a talk with her husband’s brother, armed with the results of the doctor’s tests.  However, even if he has to admit Lily has the disease, he may always deny that the disease process is as advanced as it is.

Start talking to Lily now about alternative living arrangements where both Lily and her husband can get the care they need. The time is coming very soon when this will be necessary and it is MUCH better to make these decisions before a crisis arises.

Finally, the biggest trap of caregiving is guilt.  Do your best not to fall into it. There is always guilt about not spending enough time caregiving, spending the time away from your own family, misleading Lily so that you can go get through the day without causing fights, etc.  Kate needs to realistically determine how much time she can give to Lily, given that she lives 5 hours away.  The siblings need to decide how they will split the care duties among themselves in a way that will be fair to each family.  Finally, caregiving for a dementia patient is a difficult task.  Sometimes, for Lily’s own good, Kate must play along with Lily’s hallucinations, tell Lily she agreed for Kate to go to the doctor with her when she really didn’t, refrain from correcting Lily when she says something patently false, etc.  All these things Kate would never have done before Lily got dementia.

What is your experience?  Please comment!


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10 Responses to “The Holiday Visit”

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