A New Low

Hi Minniem -

I'm really sorry to hear that this happened. Before I comment more, would you mind sharing your husband's diagnosis? I'm assuming it's dementia related, because that's my experience, but I don't want to assume.

@theorydude
Technically, Mayo diagnosed it as CAA. Another doc said Alzheimer’s and another said dementia, so I go with CAA because it is / can be associated with both.
My husband does not acknowledge any of them, even when the doctors say so. I tell him we go to the doc for his brain bleeding. He will accept that.
Thank you

You cannot change him, you can try to change yourself to better ignore his comments. If they are not new, then all the more reason to ignore them. Also try to give yourself space from him. If he is ill, then that should explain it enough-whether he has always been this way or not. Find a way to give yourself pleasure and have outside help to lessen his dependence on you. You are in a tough spot but should try to deal in a way one deals with dementia- it is not the same as normal interactions between spouses.

Vent away my dear. Sometimes a place like this is the only place we can let it out. With my husband his faults became even more evident as he lost the capacity to do anything for himself. Funny how it goes. When he criticized every thing I did I wanted it to end but now he’s gone I wish I had him back. God bless and give you strength. My prayers are with you.

@minniem, @theorydude and all... Thank you, theorydude, for the clarification. My understanding, which is extremely limited... these diagnoses are in fact quite different in causes and in symptoms? Similar, but one of those crazy things that can cause confusion for us lay folks?

Since your husband is being treated by Mayo doctors, perhaps you can request clarification from them as to which direction to go to deal with symptoms you are experiencing? I think you are presently in a very confusing situation, with only partial diagnosis... since the 3 diseases are so different in symptoms, the way they present themselves and are treated.

Make sense?

Perhaps, since the CCA doctor made the more specific diagnosis, if your relationship with him is good and you are comfortable asking for clarification, you can speak to him at the next appointment or, what I tend to do, is to use the portal to send questions to the medical staff for help. Calling to discuss your quesions with the nursing staff directly or via the portal will get the discussion started and lead you to a more in depth understanding of with what you are dealing.

I have learned through the last few decades, I need and must have clarity in order to deal well with whatever is hitting me at the time. How can you understand from where your husband is coming without knowing what disease is causing what symptoms. Also, the doctor needs to let you have an idea what to expect as you go down this road with your husband.

I hope this is helpful. I think to determine your direction in your heart and thinking and dealing with an illness, you need information. Clarity. Knowledge. Also, I do my own research using qualified sources: Mayo Clinic website for specific diagnoses, symptoms, treatments, etc... Mayo, Cleveland Clinic, other top medical facilities in the country. Also, I use Perplexity for research, not Google. Perplexity is less biased, has no advertising, has excellent referrals if you are interested in delving further into the topic. See what you can find out on your own to better understand what the doctors are telling you, and how to deal with the situations as the arise.

Blessings as you travel this crazy road... Elizabeth

Maybe you need to take a break and have some time to yourself if possible. I'm 66 and my husband is 71. My husband (no dementia) often says how he wishes my hair was long and beautiful like it was when I was young. My hair has gotten really frizzy as it turns gray, and he doesn't seem to understand that it isn't going to get long and beautiful again. He also wishes I would dye it an auburn color. I just blow it off - I know he's full of it. He's got plenty of his own aging issues that I could take issue with, but what would be the good in it? I don't know if this is helpful, but I guess my point is that I wouldn't take comments like that too seriously, especially if there is some dementia in the picture. If he starts getting emotionally abusive, that is another story.

Dear new low,
I agree with all the other comments here regarding this. My husband only has mild cognitive decline and has not yet been diagnosed with actual dementia, but in my opinion he's right on the cusp. There are many times when he says things that I know he isn't even aware of or can't help. It's part of the disease. It's hard for us though because we live in reality but they live in their own reality which is very different from ours. My prayers are also with you. Hang in there

@ess77
Information is critical, but so are techniques for dealing with the behaviors. My feeling is techniques and support are what can help a person most. All dementias have similarities.

I've been re-reading your post and the other comments. If you don't already, I'd strongly encourage you in two things: 1) to see a therapist regularly; 2) to join one or more support groups that meet in person or on zoom - there are many, regardless of where you live.

For the first, I do, and it's helpful to have someone you can discuss these issues and your feelings with objectively and professionally. It sounds like there are a lot of unresolved issues from your past that you are justifiably wrestling with. The additional complications of dementia-related issues, regardless of the disease cause, deserve regular support to unpack and process.

For the second, having people to talk to live and listen to has been really helpful for me. At times, especially in the earlier stages, it can be overwhelming hearing the experiences of others that are further along, but it's also helpful preparation and emotionally strengthening, ultimately. Regularly hearing that you are not alone in many of your experiences provides perspective, bolsters your courage, and is a good place to just vent as well.

Take care of yourself.