Cerebral Amyloid Angiopathy; I feel it is unfair not to share the diagnosis with our children.
My wife is 70 years old and was recently diagnosed with Cerebral Amyloid Angiopathy. The doctor explained what it is and that it progresses and she probably will develop Alzheimer’s. I want to know what to expect in the near future regarding the progression of symptoms. She currently has minor issues with recalling words needed to complete her thoughts. Has some issues when confronted with sometimes simple instructions or problem solving. For several months now she claims she has already seen programs she is watching on TV. I know with certainty she has not seen them before. For the most part life is normal and she doesn’t appear to be confused. The doctor said it was too early to talk about how rapidly this will progress. It is necessary to understand the time element to make certain plans regarding care both physically and financially. My mother was an Alzheimer’s patient for nearly 10 years so I know what’s coming eventually. However, she was never diagnosed with CAA. She also does not want to share the diagnosis with our children right now. I feel like it is unfair to not share this with them. After all it is like all of us got the diagnosis and it will affect us all. I am well aware the devastation she is feeling and would like some time to process this herself before making it known, but I need for the kids to understand the circumstances so they can understand the reasons she is having trouble with expressing her thoughts.
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Did the neurologist specifically mention Alzheimer's or did s/he use the term dementia? I've been reading since I first saw your post and I see that CAA is a buildup of amyloid in the small blood vessels and a cause of vascular microbleeds in the brain and a known cause of vascular dementia, which is a whole different animal that ALZ.
Dementia is when you know what a stove is but have forgotten how to use it.
ALZ you have forgotten what a stove is.
I will say this...if she does not want her children to know her diagnosis then DON'T TELL THEM. You maybe her husband but you don't have the right to go against her wishes. I have told my husband this. That if I ever told him something concerning my health in confidence and he repeated it, I would never tell him another thing and it would be a while before I talked to him again.
I hope you have a POA in place. The HIPPA laws do not even allow a spouse medical information if the other spouse hasn't signed off that its OK. I think Drs. and Nurses over look this but it can be enforced. Do this while wife can make informed decisions to assign you. Things can go down hill overnight,
It's one thing to ask your husband not to tell the children details of your blood tests and another altogether to force him to navigate an ordeal like this without the support of his family.
https://www.agingcare.com/articles/an-end-of-life-conversation-led-by-gawandes-questions-205721.htm
This was not a "let me process this first" situation. This was "I do not give permission for them to know this."
If she just needs time to process this before it's discussed, then that's fine. But if she is asking you not to tell your children at all, she is depriving them of the chance to process this and also depriving you both of their support and comfort. And I think that's pretty selfish of her.
Youre a strong person to be able to carry the knowledge of a life-changing diagnosis, work out a plan for the future, and not be able to consult with those who love you and could offer help and support.
I could not do it. Absolutely not. But I admire your loyalty and dedication to keeping this amongst yourselves until she is ready to address it.
i hope this forum provides you with that support so you feel some sense of relief and understanding. Look forward... time will move in that direction! I wish you the best!
For me, responsibilities and practicalities can trump rights at times. It could be argued that my 100 year old mother, as she developed dementia, had a right to fly across the country with loads of cash in her purse to a city that was flooded at the time without informing immediate family. Fortunately the airline was responsible, called for help and mother was taken to a hospital. Now your situation is not as clear cut, but any family who has a member who has been diagnosed with a disease which progressively and negatively will affect their mental capacity requires information in order to provide the necessary support. Her judgement is probably already impaired to some degree. It may be a question of timing.
You can involve/inform your children indirectly, by describing hypothetical situations, and the family decisions that would be required in those situations, You can discuss with them what they would do if you were diagnosed with dementia. They may already have an idea that something is wrong with their mum. I don't think it has to be an either I tell them or I don't. You can raise their awareness about dementia in families. and parents. Eventually it will become obvious. By then your wife may or still may not be willing to tell them.
Blessings
I can see both sides of this.
I think what I would have done is...Let my spouse process the information. the two of you get a fix on what is going on. See how things progress (or in some respects regress) Then I would have to talk again to my spouse to see if the need to keep the diagnosis away from family. Stress how important it is for YOU to be able to discuss the future with the family.
There are things that should be discussed anyway.
Funeral arrangements, Will, Trusts, POA for Health and Finances. Where important papers are kept. where the key is to the lock box at the bank, what your online baking info is, what are your passwords and all the mundane things that we do day to day but if something happens how does family take care of those things for us.
I am guessing NO ONE wants these conversations but they are just another fact of life.
I am sure during these conversations the wall will come down.
There does need to be a discussion as to when you will need help, and where will that help be coming from. (Memory Care facility? In home caregivers? and is your house equipped to handle what is to come? Is it safe?)
As for yourself...You need to find a good support group.
I know that there are support groups FOR people with dementia and you might want to contact the Alzheimer's Association and find out if there is one in your area it might do your wife good to talk to others that are going down the same path.
Good luck, keep us posted. I do not envy your choices on this but do your best to respect her wishes as long as possible.
I'd have some close friend take her away for a few hours [pedicure or other such treat] while you have this chat with them frankly - before this educate yourself as much as possible - get any literature you can to hand out to them [mail anyone who is away but with 'DO NOT OPEN UNTIL I TELL YOU' on it so that everyone gets it at the same time] - this could be next month or a year+ from now
Then be realistic - what if something happened to you - set up what you think will needed for her security - I don't want to be a negitive Nellie but if you drive, walk to the store etc then something could hurt you either temporarily or permanently so it is best to plan for the worst but hope for the best - you will sleep better for getting those ducks in a row [& you will need your rest] - this will be the best way to show your love for her
You seem like loving person but also be aware that your kids could inherit this too so they need to know how that they should organize their own affairs - is there a test for this? - so maybe this is a time for them to get somethings done 'in case' like life insurance or long term care insurance etc - so as much as you want go with your wife's wishes but you need to look at your kids' future ... called between & a hard place
If you are healthy and able I’d definitely vote for respecting your wife’s wishes because, at least for now, she is in control of her thoughts and decisions and she has the right to be heard and have her wishes be respected until telling your kids is necessary, and you will know when it is necessary.
Now, if you feel you need to start making changes, making decisions and doing planning that should be done in family, you should explain this to your wife, honestly, and help her get to an agreement with you as to what, when and how to disclose information to whom. I think you can still work as partners. Like I said before I think you’ll know when things need to change.
And be optimistic! She may remain stable for a long while, and I’m guessing being at peace probably will help her as much as it will help you and your family. Hence try to make decisions WITH your wife, not FOR your wife as long as you can, so she doesn’t feel discounted on top of having to deal with such harsh diagnosis. I think you’ll feel better too if you can handle things this way.
Take advantage of the fact that you still have your copilot to help you make decisions.
As a side note, please take advantage of the time you have with your wife while she is fully there, don’t waste unnecessary energy trying to “fix life” when the most valuable thing you, your wife and your kids will have are your memories. Make great ones!!