Where do I start?(7)

Andy Easton

Hi everyone, 

I'm a newbie here.  My mom has dementia, and while it's not officially been diagnosed as Alzheimer's, I'm not sure how it's not.  

Anyway, my father is her primary caregiver.  I live two hours away, so I see her rather often.  She's still at home, although she is getting worse. 

But I am really at a loss as to how to proceed and was wondering if anyone could walk me through some things?

I don't know if her medical team is comprised of who it should be (I'm not convinced).  I don't know if she's on the right meds.  I don't know what we should be doing during the day for her.  My father needs help too......he tries his best, but sometimes just makes things worse.  And he's the punching bag for her since he's around it 24/7.  

I've called the Alzheimer's Association for that initial chat.  Next is to call again and get linked up with a care consultant (and I'm all ears to see how others have felt about this). 

I'm just totally lost right now and would love to know a)I'm not alone and b) how others have charted their course.  

Thank you. 

Andy

Jo C.

Hello Andy, and a very warm welcome to you.   Where to start is with the basics.  What would benefit your mother is a care team being put together.

 Priority in this care team would be her Primary Care MD for all things physical, and a good Neurologist who sees dementia patients as a routine part of his/ her care.  Our primary MDs are awesome at so much, but they are not on the cutting edge of dementia needs; this can lead to negative preventable outcomes.

 Neuro is best at assessing just what type of dementia is present; there are many different kinds of demenatia of which Alzheimer's is only one.  Accurate diagnosis is crucial as meds for one type can be contraindicated in another and make things even worse.

 The primary MD would serve best at giving a full expanded physical exam using a full complement of labs as there are many different conditions that can mimic dementia.

  It is also important to speak to a Certified Elder Law Attorney asap if this has not yet been done.  You will want all legalities and paperwork covered as best can so there are no disasters down the road.  This CELA can also assist with putting your parents in the best position for financial purposes should Medicaid ever be needed if placement becomes necessary.

 If there are family and close friends who can be part of the team, that is great; but many here have hired good assistance as part of the care team.

There are daycare activity centers for seniors with dementia which helps the at-home spouse get some breaks; if that cannot be done, having someone come into the home for whatever the needs are would also be helpful. Some have this assistance every day, others have it for half days once or twice a week.

 Here is a link to an excellent basic overview of dementia and why things happen the way they do.  It is, "Understanding the Dementia Experience," by Jennifer Ghent-Fuller and can be found onlinecfor free download; it is helpful for families to read:

 http://www.dementiacarestrategies.com/12_pt_Understanding_the_Dementia_Experience.pdf

There is a learning ladder in all of this, it takes a bit of time, but you are on the right road with your advocacy.  Be sure your father gets a checkup too.

 If a person can afford a care aide at home, that is lovely; but sometimes is becomes necessary to make alternative living plans. Even though we may plan to never place a Loved One (LO), it is always best to scan facilities for a "just in case' sort of exercise.  We never know what will happen and unexpected things do happen abruptly sometimes.   We call this having a, "Plan B."  Hopefully never needed, but if one knows which facilities are acceptable it saves running about under pressure of deadlines.

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

 J.

  

Emily 123

Hi Andy!

Trust me, you're not alone.  The general mode of introduction to this community tends to be family members who were thinking 'age related memory issues' and then things progress.  This forum is great--there's an archive you can search too once you login (see just up to the right there?).

Doctor-wise, who has she been seeing?  

Usually a PCP will send the person to a neurologist or neuropsychologist for the cognitive testing, which will provide a baseline score of where your mom tests out against a similar demographic group. The cognitive testing takes about 3 hours and it will show where she has deficits.  A second part of testing would be performing a CT or MRI, as the 3 most common dementias (Alzheimer's, vascular, and Lewy-body) can be identified by what area of the brain is affected. Some medications that are prescribed for one type of dementia are not recommended for another type.   It definitely helps if you make a list of the deficits and behaviors your dad and you see, to share with the physician prior to her visit.  Most people will try to 'work around' discussing the memory loss around the person affected-very often they are unaware of the memory loss...because they have memory loss.  This is helpful, you may want to share with your dad:

12_pt_Understanding_the_Dementia_Experience.pdf

This has a checklist of behaviors at the bottom of the page that you can sign up to access-they do not spam. https://tamcummings.com/stages-of-dementia/

Your dad may need help--what about having an aide to come in to give him a break from some of the tasks he's picking up-maybe make some meals, light housework, laundry, etc, and just giving him a chance to get out of the house?

Now is a good time to have legal and financials put in order, for both mom and dad--someone will need to be designated POA for both of them, and they should clarify what their medical wishes are.  A visit with a certified elder care lawyer would be helpful, but you can look online to see what a POA form looks like.  

There is a very caring and experienced group over on the spouse forum--would your dad be interested in looking around over there?

LaurenB

Welcome Andy!  I'm a long distance caregiver to my mom who lives with my stepdad.  Today my mom was shocked to find out that I live about 5 hours away (I have for the past 15 years).  Don't forget to enjoy the fleeting good/funny times that can occur.  Last week my mom was working on getting Christmas cards in the mail.  She also sent pictures to "all of the guys."  It's like she's on the 1980's version of Bumble or Tinder.  Gotta love it.

towhee

Hi Andy. For a good overview of the medications used in the course of the disease try www.youtube.com/watch?v=05scoNjGmw&t=461s  or try UCLA health Medications used in dementia. Sorry I can't do a link.  Does she have a diagnosis of dementia whether or not Alzheimers is specified? Often the doctor will just say probable Alzheimers, but you do at least need the doctor to say dementia or not.