Early onset with my wife, kids are across the country.

Danno99

Hi all,

This is my very first post here. My wife is 65 y.o. and I'm 62. We live together in NH and are very happy! She was recently diagnosed as having Early Onset Alzheimer's. I'm skipping over a lot of information here, because I want to get to my point.

She has 3 kids that live on the west coast. Of course I shared this information with them and her brother. Our day to day living is actually pretty good. There are some minor hiccups, but overall, not bad at all. The issue is that her kids want to help, and I certainly can't blame them. The problem is that they don't live with her day to day like I do. When I talk to my wife, I try to explain that the doctors think that she has memory problems. I don't use the term Alzheimer's, because I think it's not warranted. The doctors only did those "I'm going to give you 3 words to remember" test, and one cat scan, and came to this conclusion.

So, you probably disagree with me already, but what I'm trying to say is that her daughter called the other day and said "Mom, you have Alzheimers! You need help!!". This only made my wife extremely upset.

My issue is, how can I get everyone on the same page? I know that they all want to help, but I live with her 24/7. Shouldn't I be the one who makes the decisions? I don't know what to tell her kids, but we can't have people saying different things to her as it would only cause confusion? Thanks for listening.

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eaglemom

Welcome to the message board. I'm sorry your here, but you will find valuable information and knowledge here.

The simply answer is, yes, you are in charge, period. I would hope you have a good relationship with the three kids on the west coast. I would imagine they are scared for their mom. But that doesn't mean any one of them can say whatever they want to their mom.

If you could facetime / zoom the three of them while your wife wasn't around it would be helpful to all of you. You simply need to present it such that unless you are living in the house 24/7 you really can't understand ALZ. That each ALZ person is different and routine routine routine is best. That you are working your best to achieve that for their mother. To keep her safe, healthy and happy. You would appreciate it that when they call to keep it brief and pleasant - share what they've done, etc. They can't be asking mom questions because that only upsets her. If they have questions they can always email / test you & when you've got time you'll be glad to respond. You will never do anything detrimental to their mom or her safety.

Hopefully that will help with the situation. You keep stressing your doing everything for their mom. Please come back often and let us know how it is going. You'll have good days and not so good days - but you've got this.

eagle

FAHNJL

Welcome to the foxhole! I'm sorry you're here. You're in charge, pure and simple. My wife is also 65, diagnosed this summer with EOAlz. We don't use the A-word. Our kids speak only to me about her diagnosis and condition. With their mother, they have fun, drink coffee, look at pictures, play games. Our kids are close, yours are far away, I can imagine how difficult that must be for them. What they say, they say out of ignorance, so educate them. Invite them to this site, and encourage them to research. 'Understanding the Dementia Experience' is a good read, and there are more. I'm new at this too, but one thing I've learned is to don't try to make your wife's condition the center of your children's lives. They are hurt badly and grieving, Let them live their lives while you sweat the details. You have to be their rock, just like when they were little.

(And please have more testing done!). Peace.

Danno99

Hey all,

This is my first post here and I can already appreciate the people and the responses that I've gotten. We are in the very first stages of this journey and I know that I'll be back here quite often to ask more questions.

Actually, I do have a new question, and not sure where to post it? My wife had an EEG yesterday and we got the results today. I have access to her doctors website and I've seen the results, but she has not yet. I'm going to have to give her the details, but I don't understand the results as they are in medical language. Is there a place here where I can post them for a translation? I'll post it here. Maybe someone will be familiar with the terminology?

Detail: The resting background consists of a good anterior-posterior gradient and 10-30 uV, 8-9 Hz activity with frequent admixed theta slowing during apparent wakefulness. There were no epileptiform discharges and there were no rhythmic or evolving patterns concerning for seizure.  Hyperventilation was not performed. With photic stimulation, a negligible driving response was appreciated. EKG: In areas without artifact, no major dysrhythmia was appreciated. Impression: This is an abnormal EEG in the awake state due to intermixed theta slowing during apparent wakefulness, consistent with a fluctuating mild encephalopathy.

Thanks all!

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Marta

The EEG was done to rule out seizures and it did that. The finding of mild fluctuating encephalopathy is very nonspecific and could be indicative of a number of structural, neurological, or metabolic conditions.

EEG is just a part of the work up for EOAD. Next may be an MRI. Once the work up is completed, including neurocognitive testing, and bloodwork, your neuro can put the pieces together.