Young wife won't get testing ever

Richard-Husband

My wife and I are 51-years-old. Our 29-year relationship went from perfect to impossible over the last 3 years.

I suspect based on 9 of 10 signs that my wife has MCI or Alzheimer's but she says the examples are trivial and coincidental at best. Recently she has proclaimed that she will never get tested because it would not help anyone having that knowledge.

This reaction and so many others are not like her and are drastic and recent changes that have accelerated in progression.

I feel like the villain in this, but the disruption for our 9-year-old and myself make it more urgent that we can get some answers. I would love to be completely wrong. At this point I don't know how to get medical help.

Joe C.

Richard, Welcome but sorry you needed to seek out our community. When I first suspected my wife was having cognitive decline she would not acknowledge it or talk about. My first attempt to get a medical diagnosis was to call her primary care physician before her annual checkup and tell her my concerns. This was in the very early stages so my wife could really Showtime when she needed to so I provided the doctor with examples of what I was seeing. The PC set up a referral to a neurologist and that is the only way I got her to go.

It is important to get some testing done early because the are treatable medical conditions that mimic dementia ranging from vitamin deficiency to brain tumors. If it something treatable you want to find it early.

Also look up anasognosia. It is a condition that many PWD have that impairs the ability to recognize that their cognitive reasoning is declining. I initially thought my wife was just in denial until I learned about anasognosia.

wizmo

Welcome, and sorry you too are facing what we all are doing here.

My DW was diagnosed at 52, now 59. It took me 2 years to get her into neurologist. She was afraid of a negative diagnosis, felt it was better not knowing. I argued maybe it was not any kind of cognitive decline but something simpler/treatable, maybe related to menopause ("brain fog" commonly associated) and we could only know by seeing a doctor. Only after increasing symptoms and gentle prodding we got the appointment and I went with her for support. Part of the problem is loss of thinking/reasoning. Anosognosia is common - lack of awareness of one's own condition/deficits. They claim everything is "fine", no problem, unable to see any other perspective.

You might have to wait for next annual wellness visit to PCP, discreetly inform them before the appointment what you are seeing. They can perform some basic checks, order referrals or more frequent follow-ups, can tell her people over 50 need increased monitoring for age related things but it is just routine at this point without causing alarm. Even so, it might be too early to get a diagnosis - many people go through exhaustive testing over several years without a conclusion. If you feel it is more urgent, you can make the inquiry at PCP and they can advise on ways to get her into the office out of cycle.

Independent of medical direction, get your legal documents in order (will, advance directive, financial + healthcare POA) which are good for anyone to have in place. If you wait too long, it will be much more difficult to get them. If you have no diagnosis and nothing in medical records, consider long term care insurance for both of you. It will be impossible to get for her once there is a mention of cognitive decline. Also think about what if something happens to you along the way.

M1

Welcome Richard and I am so sorry. I too had my head bitten off the first time I broached the subject of memory loss with my partner, although we were not dealing with early onset. It is virtually always the families who notice first, and very very common for the loved one to be defensive and come up with excuses. You absolutely have to alert her doctor, in detail, to your observations.

The one weapon you may have is to appeal to her altruism as a mother: it does affect your child, hugely, and given the new medications coming along, early treatment might prolong her ability to be an effective parent. I would at least try that approach. Or challenge her to prove you wrong, that might work also. But as Joe mentioned, anosognosia is a very real thing.

You have come to a very supportive community. Keep us posted.

sandwichone123

Getting my dh tested allowed me to file for disability for him. Without a diagnosis, there isn't anywhere to start that process. Having him declared disabled paid off his student loans (a biggie for us!) and provided more income than his early retirement did, and also allowed him to go on Medicare after a couple of years.

This disease is pretty tough for young people, at least in part because many of the support services we pay for in our taxes are limited to "seniors" over 60.

Your child also needs answers and support.

Quilting brings calm

Tell your wife that you’ve been reading that people in their 50s should get tested for underactive thyroid and low B12 levels. That people are waiting too long to test and it’s much easier to treat if you catch it early. Tell her you want both of you to get tested. Both of those conditions can mimic dementia, are found via blood work, and are easily treated.

Call her doctor and tell the nurse your concerns.

Bluebird

When you talk to your wife’s doctor if they suggest a mini memory test tell them you want something more extensive. Many people with dementia can do what’s called “show timing”. They can easily pass a short memory test but have problems with a longer test. My husband passed a mini memory and for him it confirmed that there was nothing wrong with him. It took me 5 years to get the doctor to refer him to a memory clinic. He was still easily passing the mini test. When the neurologist tested him, with a longer test, he scored 0 on the short term memory part of the test.

Richard-Husband

These answers have been very helpful. Thank you to everyone for this insight.

I spoke with a Care Consultant at the Alzheimer's Association today and came up with a starter plan to enlist one other person who is detached from the immediate family and get them involved from another angle. Our doctor of 25 years retired last year and we have the same new doctor who really does not know either of us unfortunately. With our old doctor it would have been much easier.

I can relate well to the show timing effect. I know a full neuro-psychological exam will tell if there is something or nothing at all, it is getting her to agree to go to the appointment that is the challenge.