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What do you tell your family
ffwife
Posted: Monday, December 26, 2011 3:54 PM

Had a great christmas. Cooked and coordinated the day for 14 people. a few asked about  my health and I was quick to dismiss it and moved onto another topic. I feel so conflicted about not telling  my Mom and son about my APOE4+status and current memory issues. My mom is 80 and not in good health and I'm afraid telling her would cause undue stress and does she really need to know. The bigger problem is my son. he is 33 and has lots of years ahead of him. I don't know what to do...do I tell him? And if so how do I explain it to him?

 



SnowyLynne
Posted: Monday, December 26, 2011 4:00 PM
Joined: 12/1/2011
Posts: 29


I'm a firm belieber in being up front,which I was,I told ALL my family....
JAB
Posted: Tuesday, December 27, 2011 9:33 AM
Joined: 11/30/2011
Posts: 740


But Lynne, you had a firm diagnosis of dementia.  ffwife has a diagnosis of non-amnestic MCI, so there's no way of knowing whether she is going to recover, or stay the same, or eventually get worse.

 

ffwife, I wouldn't tell your mother. I don't see what good it would do, and as you've said, it might cause harm.

 

(But good golly gosh, you're not having that many problems if you could orchestrate cooking for 14 people!  Wow!!!  Are you on a new antidepressant?  Is it helping?)



Iris L.
Posted: Tuesday, December 27, 2011 9:58 AM
Joined: 12/15/2011
Posts: 16143


Wait until after you have your consultation appointment at the Mayo Clinic in January.  Does he know you have this appointment?

Iris L.


ffwife
Posted: Tuesday, December 27, 2011 10:50 AM
I had help with the dinner and coordinating the other meals, sleeping arrangements and games. And no my son or anyone in my family knows about Mayo
Iris L.
Posted: Tuesday, December 27, 2011 10:58 PM
Joined: 12/15/2011
Posts: 16143


Coordinating 14 people over a holiday even with help is a big undertaking.  What games did you play?  Why are you not telling your son about your appt at Mayo Clinic?  Won't you be away for several days? 

 

Iris L.


ffwife
Posted: Wednesday, December 28, 2011 4:20 PM

we played apples to apples and crappy birthday. Mu youngest adopted son lives at home but since we are coming and going so much he doesnt think anything of it.

 

My oldest son (birth son) lives in Dallas and does not keep track of my coming and going


Iris L.
Posted: Wednesday, December 28, 2011 5:31 PM
Joined: 12/15/2011
Posts: 16143


I never heard of those games, apples to apples and crappy birthday.  I hope they are fun games.

FFwife, will anyone in your family accompany you to the Mayo Clinic in January?

Iris L. 


Lisa428
Posted: Wednesday, December 28, 2011 9:04 PM
Joined: 12/5/2011
Posts: 795


Dear FFwife,

I believe it is important to have your son accompany you to your evaluation and testing.  Most doctors want to speak with a CG, family member or friend.

Good Luck!

Please, let us know how it goes.

Peace and hope,

Lisa


Iris L.
Posted: Wednesday, December 28, 2011 9:55 PM
Joined: 12/15/2011
Posts: 16143


Lisa is right.  The doctors seem to take what the caregivers say more seriously than what the patients have to say.  That has been my personal experience.

 

Iris L.


Mimi S.
Posted: Thursday, December 29, 2011 10:25 AM
Joined: 11/29/2011
Posts: 7035


Just another one to echo all that has been expressed above.

 Even with help, managing a dinner for 14 is impressive.

 

Playing Apples to Apples is fun and requires good cognition.

 

I firmly believe that both sons should have been clued in about what's going on with you. Whichever one goes with you to Mayo will be able to confirm or deny that they also see these problems. Perhaps they see things that you have not noticed. 

 

If you chose to go alone, that is an important observation for the doctor. This person is cognizant enough to make a trip here from another state and get to appointments in a very large facility. This would be difficult, if not impossible for many who have dementia.


ffwife
Posted: Thursday, December 29, 2011 10:40 AM

Hi,

 

My husband is going with me to Mayo. My oldest son lives in Texas so going with me is impossible. My youngest has special needs and cannot.

 

The interesting thing and what may be a challenge is that Mayo said I didn't need to be accompanied............so if they will not sign y husbands family leave papers to accompany me I will have to go alone.


JAB
Posted: Thursday, December 29, 2011 10:53 AM
Joined: 11/30/2011
Posts: 740


Iris L. wrote:

Lisa is right.  The doctors seem to take what the caregivers say more seriously than what the patients have to say.  That has been my personal experience. 

  

Iris L.

Iris, it isn't that the doctors don't take the patient seriously.  It's that someone who has a dementia is very likely to have "anosognosia".  This is a lack of insight.  I.e., a dementia patient often is unaware that s/he has problems, or is unaware of the full extent of the problems s/he has. 

  

My husband was diagnosed with moderate (stage 5) Alzheimer's over six years ago.  For most of the time since then, he has firmly believed that he is just fine.  It is only in recent months that he has become aware ... sometimes ... that his mind isn't functioning quite right. 

  

(Unfortunately, some doctors who are unfamiliar with dementia will believe the patient and not the family.  That can cause all sorts of problems...) 


ffwife
Posted: Thursday, December 29, 2011 11:26 AM

I know exactly where my deficits lie, I'm even more aware of them than my family members.  I describe them to my Dr and when they talk to my DH he tells the DR what he sees and both of us tell the same tale. The family that was at our house at christmas didn't notice anything.

 

Perhaps that is why Mayo says I dont need to bring anyone with me to my appt(s)??


nwlegaleagle
Posted: Thursday, December 29, 2011 1:14 PM
Joined: 12/6/2011
Posts: 3326


I know exactly where my deficits lie, I'm even more aware of them than my family members.


Me, too! I keep a daily diary. Before a day is over, I type onto a Word document I created (and keep on the desktop of my laptop) any events related to AD. If nothing happens related to AD, I type in No Symptoms. I take a copy of it with me to my appointments with the neurologist.


ffwife
Posted: Friday, December 30, 2011 10:28 AM
so we got off track, although I enjoyed the running conversation. The question if telling my son I carry the apoe 4 gene or not still remains?
Mimi S.
Posted: Friday, December 30, 2011 10:40 AM
Joined: 11/29/2011
Posts: 7035


Hi FF wife:

You write that your son who lives with you has some sort of mental problems. So that would affect your  decision. And just because you have the gene, does not mean your son has it. With him, I would most likely filter what he is told. Your husband should know all.  My take.


JAB
Posted: Friday, December 30, 2011 12:09 PM
Joined: 11/30/2011
Posts: 740


ffwife, the APOE4 gene is extremely common.  Many millions of people carry that gene and never develop dementia.

 

I would NOT tell him about it.  It doesn't matter, and might upset him needlessly, just the way it's upset you needlessly.


SnowyLynne
Posted: Friday, December 30, 2011 4:46 PM
Joined: 12/1/2011
Posts: 29


My Neurologist talks to me as well as hubby,never talks as if  i'm not around....That's the rudest thing a Dr can do,the patient knows just won't say anything......
Cheryle Gardiner
Posted: Monday, January 2, 2012 10:28 AM
Joined: 11/30/2011
Posts: 529


Snowy Lynne, I'm so glad your doctor doesn't ignore you and what you have to say! When Jim was first in a facility for rehab after his strokes, there was an RN who always talked about him, instead of to him. She made me so angry, and no matter how many times I made a point of keeping him in the conversation, she would continue to do it!

I agree that it's the rudest thing anyone can do - especially a medical professional, who should know better!