← Return to What were the first signs you noticed?

Discussion

What were the first signs you noticed?

Caregivers: Dementia | Last Active: 4 hours ago | Replies (23)

Comment receiving replies
@azoremama

My 65 yo husband (with a history of a previous MTBI 10 years ago) has been having way more issues with his brain. We do not have an actual diagnosis aside from MCI which does not seem to be agreed upon. We recently moved and have already been referred to a neurologist. Every several months, for a long time, my husband gets what seems to be TIAs. We do not take him in every time he gets slurred speech along with balance issues and facial numbness as well as not knowing common things in those moments. It has been a part of our life and a waste to keep taking him in. He recently went in because his primary where we were from told us to take him to ER. They admitted him overnight. He does not fit any normal criteria: no high BP, high cholesterol, scans have not shown stroke activity in CT or MRIs. We do know from the past that our neuroscientist said that there can be damage on the cellular level when scans are clear. I know this to be true. But the neuro from this last hospital visit told us that if he had another problem not to come there as we would just get him. I understand not needing CT or MRI. It is a waste of money. But he asked us no personal questions and only visited him the last day after scans were done and hubby was basically back to normal. (Hubby went in and thought we were there for a job. His speech was not slurred, but he didn't know his birthday or date or several other things and was totally confused along with balance and facial numbness... just not slurred this time. He had been having much more memory loss than his usual. He had several very important events within 5 days that he just had no memory of happening. His memory loss is always as if it never happened - Aside from the other type we all get that needs coaxed or reminded. He is also having weird word replacements. Ex. I will put my dirty clothes in the garbage. Or he pronounces things in ways he has never said (last week he was talking about the Ămish instead of Ahmish and correcting me when I casually say it right) and when these things happen, he later has no recollection of it. Lots more blank staring, but I do not believe it is seizures as they checked him 4 years ago. He stops in the middle of something and literally can spend 15 - 20 seconds lowering his head and staring, then continues. If I ask what is he thinking about... nothing. When we moved, I was able to see way more of this between jobs. None of this is life shattering and he returns to normal - of a sort. But something is definitely wrong. I am back to work and I just don't think he can get focused enough to do much. He has never been lazy, but he has no recollection of much of what he does during the day. We have a dog that gets to stay with him and help his focus. But he can't think of things to do and he literally messes up so many things. The simplest things are just so hard. Glueing a piece of wood and not thinking to wipe off the excess. Screwing curtain rods or blinds and so many are loose. He painted some before we moved and he kept missing areas, or putting the wrong paint on the trim (including the wall color). He used to be so good at this post injury. His favorite phrase is "I didn't think of it." The most common sense things: heat on when cold. Eat, he is forgetting to shave and this is so not like him compared to many. He doesn't think to turn the TV on often. This note is too long. I have done several of those online dementia tests and he passes them all when he is in his normal state. To go to a doctor and have them see him when he is normal is probably common, yet not helpful. I need some direction before everyone thinks he is just crazy. That neuro at hospital said to feel free to get more opinions if it brings us comfort. That bothered me, but he did do all the right tests while we were there and he did study the past notes and had no answers. They even did a spinal tap to see if cancer cells got in fluid. Again.. the right thing. CLL But he had no clue what is going on lately in a regular basis. I knew the move would stress him. But it has been long enough and house is in order without the chaos. Thank you for your time. Help on direction before the neuro appt. in January. Might I add... never smoker or drinker.

Jump to this post


Replies to "My 65 yo husband (with a history of a previous MTBI 10 years ago) has been..."

@azoremama We/come to Mayo Clinic Connect! WE’re glad you’re here. One question: what does CLL stand for?
Look forward to seeing you in other discussions!

Because my father-in-law died of Alzheimer's Disease, my husband and I were more attuned than many about the early changes. So, when my husband started changing, I noticed. His personality was the first thing that changed. He used to be very aware of unspoken or spoken social signals, but that ability disappeared. One early example was when he touched me inappropriately in a store. When I stopped him, he didn't understand why. Another example is the way he told a joke to his grown son that contained the punchline "retarded" even though his son has a daughter with Downs Syndrome. That was hurtful to his son and his wife. So, it was a change in personality at first, and for a long time, that was the only noticeable change. Then, he started getting lost going to places he's known for over 20 years. Also, there's lots of blank staring. He's speaking too quietly for me to hear a lot of the time...almost a whisper. He teases me too much. It's hurtful at times and when I ask him to stop, he does stop, for a while. That's very helpful because I know he's still in there. Other changes are small things that might be normal in someone not as focused and exacting as my husband, like buying the wrong thing at a store, or forgetting how to reheat something for dinner. He asked me if he should put the casserole in the oven at 450 F for 45 minutes. 🙂
When we're at a neurologist appointment he compensates so well that the doctor hasn't seen the problem until recently. However, I've been going to appointments with him and advocating for help for him for several years. The doctor put him on Aricept a few months ago, and I believe it's slowing down the changes. My husband's brain scans don't show Alzheimer's signs. His neuro diagnoses to date are MCI and essential tremor.
I hope this helps. And, Merry Christmas! Caring for someone you love with this awful disease is hard. Try to find a little bit of the one you love to celebrate and hold onto. He's still in there.