Telling my kids

klucey

My children are in their 20s and launching with the ups and downs but are both in a good spot. I don’t want to tell them yet.

Iris L.

Welcome, klucey. Have you received a diagnosis of dementia from a neurologist? If your kids are in their twenties, are you in your fifties? What exactly do you want to tell them? It may help you to have some plans before you tell them. Please write back more about how we can help.

Iris

klucey

I had a equivocal dx in 2017, but nothing definite. I’m going for a new eval soon. I’m 60, My plan is to explain that I’ve been having difficulty planning, keeping track of things and apathy.. I’ve had depression all my life so some of my behaviors are “normal” but that these things have gotten more difficult for me lately. I went to see a neurologist who says and here I might soft pedal and say I have mild cognitive impairment. But I’m pretty certain I’m in a progressive early dementia. I live alone and don’t have the funds for the care I’ll need; however I think my son could help

Iris L.

Hello klucey, your story is like mine. I am 73 now, but I began having memory loss and cognitive issues at age 37. At that time I was diagnosed as having depression and anxiety, later systemic lupus. In 2008-2009 I had extensive testing and was diagnosed as cognitive impairment not otherwise specified. This particular diagnostic code is no longer used by the DSM5, but it suits my purposes. It means that the cognitive impairments are due to diseases other than Alzheimer's Disease.

My neurologist offered me a trial of Exelon patch. Within a few days, I noticed a difference. I had had trouble with memory, speech, reading, figuring things out. All improved with the meds. Another doctor started me on Namenda. I have been on both since 2009.

After a few years, my neurologist got me enrolled in a clinical trial so I could undergo an Amyvid PET scan which showed that I did not have amyloid plaques in my brain, so he definitely ruled out Alzheimer's Disease as a diagnosis for me at that time. I am telling you this to let you know that not everyone with a dx of MCI will go on to develop Alzheimer's Disease. In fact, major depressive disorder can present as a mimic of dementia, called pseudodementia. You can look that up.

Aggressive treatment of the depression is called for. This means with medications and with appropriate talk therapy. There are new antidepressants available. Have you been prescribed aggressive treatment? If it were me, I would look into this. I have more to say, but this is all for tonight.

Iris

Iris L.

Klucey, I think it is important for you to understand about anosognosia. This means that PWDs (persons with dementia) are unaware of having dementia. They vehemently deny having dementia or problems functioning, however anosognosia is NOT denial, but a characteristic of dementia. It can be exhibited in other neurological diseases.

Approximately seventy per cent of PWDs have anosognosia, so it is a major sign of dementia. The fact that you are aware of your cognitive impairments points away from Alzheimer's Disease, although it does not rule it out completely.

Iris

Amy Joy

It’s not easy telling your family and friends you have dementia.

Maybe they already know.

I struggle with dementia in my mind for long time when family wanted me to get help.

I was denied that I had dementia and didn’t want to believe it or anyone to know.

BadMoonRising

This is my opinion only, based on my personal journey. Take it with a huge grain of salt.

In 2011, my kids knew the results of my extensive neuropsych evaluation but weren't particularly concerned since I was my same old self. When I received the Positive results of my Amyloid PET in 2017, I waited six months before informing them. As of today, my diagnosis remains Mild Cognitive Impairment. However, I expect that my results on the brief testing I have scheduled this Monday will likely indicate some deterioration but hopefully nothing significant. "Person, woman, man, camera, TV"! 😉

There are patients diagnosed with Mild Cognitive Impairment AND have a boat load of amyloid in their brain who do not progress to Dementia. Although I suspect that after 10+ years I have crossed over, I'm confident that I made the right choice in leaving off the "Alzheimer's" label. Six plus years of needless worry? Nope. I have no regrets.

[Deleted User]

The user and all related content has been deleted.

klucey

I am receiving assertive depression treat ment. I. Did experience pseudo dementia years ago. But this isn’t that. My primary care dr, my psychiatrist and my therapist all believe. I have dementia. I had an eval a few years ago and at the time they said something is going on because I was 75% of functioning. I was started on Aricept. But I was doing pretty well so as the neurologist said go live your life. Now I a new an eval set in a couple of months. But I know in my gut I have dementia—there are just too many symptoms. Of note, I can’t really read books anymore, knit, paint. I’ve lost my sense of humor. Hard to stay organized. Hard to stay on top of bills, cooking, but I’m managing. I try to walk and socialize which helps.

I have told both of my children and it is a relief that I don’t have to hide this anymore.

Iris L.

Klucey, I have a hard time with the same functions, too. Now is my time to work on Plan B. Are you making plans?

Iris

klucey

I’m connecting with an Alzheimer’s medical clinic and have contacted a home health program. I’m considering a move to be closer to this clinic as they have many additional support resources. Plus my therapist and psychiatric provider. The ability to plan and carry out the move seems overwhelming. The downside is that I won’t be near friends, which has been a huge help with my depression and dementia symptoms. Financial worries are not helping. At this point I don’t need assisted living, but if this were an option, I would go in a heart beat. To hand this over to someone else would be fantastic, but I don’t have the money. I don’t have family nearby who can help. I don’t even have someone who could reasonably be my power of attorney. So plan b is hard, but I’ll figure it out.

Iris L.

Klucey, I am in the same boat. I don't have a natural POA so it is hard for me to carry out my plans. I have decided to remain in my home and neighborhood for the foreseeable future, since everything is close by and there is public transportation and senior transportation available if needed. I suggest you begin your planning by assessing your financial resources. What are your income and debts? Will you need Medicaid services in the future?

Have you ruled out one of your children as POA? You can do a lot of pre-needs planning so there will be less decision making for the child to do. If you choose one, give both financial and medical authority to the same child; do not split the tasks. That is a recipe for family disruption. There are many sad stories about siblings fighting over mom's care. At the same time, there are also stories of children working well together to make sure mom has a dignified and safe life.

You have the benefit of free telephone consultation with a Care Consultant at your local Alzheimer's Disease chapter. She can help you with planning and with finding local resources. Call the Helpline at 1-800-272-3900 and ask to speak with a Care Consultant. One is available 24/7.

You will be surprised by how little we need to live with. If you have a family heirloom, consider passing it along now. Usually, young people don't want family stuff. This is discussed often on the boards. Everything will be tossed into a dumpster when the time comes. It is freeing to discard old stuff. Do it one day at a time, bit by bit. The goal is to make your life easier. Do you have a notebook or journal? This helps me a lot!

Iris

BadMoonRising

Klucey, did you undergo Amyloid and/or Tau testing? I know that tau can now be tested with a blood sample. Labcorp offers this test. There is also a blood test for amyloid but I haven't checked to see if it has received approval.

klucey

Thank you for your advice. I have now told both kids and that feels freeing, although my daughter is skeptical. I begin the evaluation process in September so I’ll find out in more detail what’s going on. I did have a thorough evaluation 5 years ago which showed brain abnormalities and reduced cognitive functioning but diagnosis was equivocal. I know now with progression of symptoms that I have dementia possibly frontal temporal dementia. Stress worsened my symptoms considerably in just over a year. Im doing the best I can, and feel good about that.

BadMoonRising

Your daughter's skepticism is normal. We want our children to be normal. :) Heck, my PCP, therapist, and nurse practitioner do not "see" AD, while my Neurologist insists that AD is my diagnosis. After panicking last week, I've swung back to "I don't have AD". Regardless of the type of dementia, the prognosis is terrifying. It may take a while for your daughter to come around.

Are you on Medicare or Medicaid? Insurance can be a big deal if you receive a dementia diagnosis before health insurance is guaranteed. For example, I am on Medicare and have a supplemental plan through my former employer. I'd love to cut my costs, but, in my State, the option to purchase a less expensive Medicare Supplement plan has passed. I would not get past underwriting. The positive amyloid PET from the IDEAS Study killed that option. Sigh.

Stress certainly messes with your brain. I swear, I could feel my telomeres shortening every time I had to deal with a certain family member during my (now deceased) parent's illness. I am happy to hear that you are able to move forward and feel good about yourself.

Mimi50

I am sorry about your diagnosis. My husband was diagnosed with VD year ago. We waited to tell our son. Until we had definitive diagnosis.They can handle a lot more then we think they can. Joshua has been great about helping his Dad. You do what you are most comfortable with.

Mimi50

https://alzconnected.org/discussion/comment/171639#Comment_171639

If you live alone then you should tell him soon. So you can do Durable Power Of Attorney. So he can handle your finances when you can’t anymore. Medical Power Of Attorney too. So he can handle your medical affairs too.