My husband is currently not diagnosed with dementia, but he is having a lot of memory issues, and also confusion/agitation when things don't make sense to him. We recently had some neuro psych tests done but don't know the results of those yet. We are both off of work, because he's also had physical issues that would be problematic if he was working, and I've been taking care of him since December 2024. My husband also has a mild case of cerebral palsy from birth. He did have an EEG in December which showed focal slowing, but the neurologist didn't think it was anything to worry about. However, the memory stuff is not getting any better. Then there has been things like waking while sleeping, which he's never had in his life, head pains, constant watching TV for weeks, and then not wanting to watch at all. Not wanting to listen to music, which used to be his favorite thing, so we sit in a silent house right now all day and night. Not wanting to eat or eating very little, also not normal. Getting letters or words mixed up, not remembering how to write letters, getting events or people's names mixed up or not remembering names at all that are familiar. Not wanting to have sex at all for 4 months, and now suddenly wants to. This is also not normal... my husband used to have a high sex drive. His personality also changed from being serious, to being more jovial all the time. So many things, I can't write it all. I have had to take over all the financial things, important phone calls, bill paying, ect because my husband doesn't remember things or he gets confused. And Im also taking care of the house because he physically can't most of the time either. Before we used to share all these responsibilities. I have run the gamut of emotions during this time, my house doesn't feel like my home because it's become more like a nursing home, I am always here with my husband and do get occasional breaks but its hard to always be together and the same thing all the time. Hard to not have my husband be himself, he's been more childlike. Hard to have to be in charge instead of us be equals. Not knowing if this is how it will be from now on. I do love my husband, but it feels so different now, like I am his mom instead of his wife. I don't feel attracted to my husband at this time since I have had to be a caregiver for all these months. Idk how to handle the sex thing if he goes back to having a high sex drive. I'm just drained. Is this all normal to feel this way? I've been reading everything i can on this topic to try and cope. I have told our families what is going on, and how overwhelming it is, that i feel like i dont have a husband anymore, sometimes they call and check on us, but not most of the time. I understand that everyone has their own lives and because im.married to my husband, I have the full brunt. But it's just hard. Friends have told me I need to take time for myself, and I do try to, but its not enough. I could use a whole day and night or two by myself. NOT that my husband is horrible or anything. I'm just tired and burnt out. I can't cry in front of my husband anymore because he thinks he did something to make me cry, like a kid would do. Idk what to do anymore,
"I am 48 and my husband will be 51 at the end if the month. We don't have any children because I have PCOS(Polycystic Ovarian Syndrome and have never gotten pregnant) i also have diabetes(well controlled) fibromyalgia, multiple food and environmental allergies, and chronic back pain and sciatica that make things more difficult. So I have difficulty working a regular job, But i was working at a local consignment store in our town doing modeling, window displays, putting merch away and helping customers.My husband and I have been married for 28 years this month.
My husband has worked for over 20 years at a pizza factory and is very good at his job, well respected, and was one of the top workers, in November he started to have physicalissues so bad while working tgat it was not safe for him to keep workingwhile we figured out everything. He is on long-term disability from his work at this present time while we are trying to figure out what's wrong. This has been going on for over 2 years, but only accelerated last year. In the beginning it was just small things you knew weren't right but not really enough to go to the dr about...like being easily irritated about things that wouldn't normally bother him, not wanting to go anywhere because it felt like to him that we were always gone, which we werent, being tired all the time and sleeping whenever he was not working (we have already ruled out sleep apnea). Then last summer he started having trouble walking, weakness, staggering gait, severe head pains that came and went, swelling and temporary bruising around his one eye, loss of muscle control, seizure like shaking,, slumping over...my husband does have a seizure condition so we had a seizure study done to make sure he wasn't having breakthrough seizures..he isn't. The neurologist thinks the head pains are trigeminal neuralgia headaches and possibly the other physical issues are toxicity caused from his anti seizure med. So they gave him a new med and decreased the old one, but he is still having those issues. We will see the neurologist again on the 27th of this month. And the neuro psych dr on the 12th of this month to see the results of his psych testing. The memory issues have not improved since the med adjustment either...apparently some anti seizure meds can cause mild memory issues. But these things he's experiencing are more serious. The neurologist wasn't even worried about the memory things until I kept calling and telling everything that was going on, and then the neurologist finally ordered the psych testing.
There have been no hallucinations. My husband sometimes does remember later that he couldn't remember certain things , if you ask him. But not always. He knows his brain is not working right and he will say that frequently. He keeps asking me when he can go back to work, like a kid would do, over and over. The neurologist said our goal os 2 months to see if the med change makes any difference and if my husband is better to go back to work. But idk if he will be. Especially with memory stuff.
My MIL and BIL live the closest to us in the same town. My family lives in surrounding towns. But not far. MIL and BIL have taken my husband a few times for a few hours, and a friend has too. Which is nice. But its far and between. My family has not really been involved at all besides reading my group texts to update and then commenting on those.
We have filled out the paperwork on POA.
MIL,who is a former nurse, has been coming with to the appts for added input and support, but she will be 80, and doesn't always remember everything, so I have to explain multiple times to my husband and then repeat to MIL if she forgets. So that is tiring as well.
I had looked into if my husband is having Post Impairment syndrome because of his CP and aging. Most CP patients get that as they age."
Do come back and update us.
Yes, of course it is.
You don't even know what is happening here. I hope you will update us with the results of all these tests recently taken, because of course, like you, we haven't a clue what is happening.
You do not tell us what you age is, but it seems that you were still working. You have no indication of mental illness in the past for your hubby, and this doesn't sound like any I am aware of.
I can only guess that you are looking at a rapid onset of dementia, early onset, and those diagnosed early often do have a more rapid onset.
What you tell us has moved you with great rapidity from being a loving spouse to being a caregiver. As you can imagine, those are two highly different things that don't mesh well together. All of your feelings are utterly normal.
I am so sorry at what you are going through. I think that you must be in the hands of a neuro-psych MD, and I wonder what he has told you other than awaiting the full gamut of testing.
I hope you will update us when you learn what may be happening here. Meanwhile, if you are not already hubby's POA, and think he can understand things enough, it is time to see an attorney for documentations of anything needed.
As well as telling us your respective ages I wonder could you tell us if you have children in the area, or able to come to support you through this testing? Do you have siblings or other support system in place? Can you tell us a bit about your respective jobs and whether your husband was at all ABLE to do his job? What were the very earliest symptoms you saw? Have there been any hallucinations you are aware of? Does hubby seem to understand the changes occurring for him?
My husband has worked for over 20 years at a pizza factory and is very good at his job, well respected, and was one of the top workers, in November he started to have physicalissues so bad while working tgat it was not safe for him to keep workingwhile we figured out everything. He is on long-term disability from his work at this present time while we are trying to figure out what's wrong. This has been going on for over 2 years, but only accelerated last year. In the beginning it was just small things you knew weren't right but not really enough to go to the dr about...like being easily irritated about things that wouldn't normally bother him, not wanting to go anywhere because it felt like to him that we were always gone, which we werent, being tired all the time and sleeping whenever he was not working (we have already ruled out sleep apnea). Then last summer he started having trouble walking, weakness, staggering gait, severe head pains that came and went, swelling and temporary bruising around his one eye, loss of muscle control, seizure like shaking,, slumping over...my husband does have a seizure condition so we had a seizure study done to make sure he wasn't having breakthrough seizures..he isn't. The neurologist thinks the head pains are trigeminal neuralgia headaches and possibly the other physical issues are toxicity caused from his anti seizure med. So they gave him a new med and decreased the old one, but he is still having those issues. We will see the neurologist again on the 27th of this month. And the neuro psych dr on the 12th of this month to see the results of his psych testing. The memory issues have not improved since the med adjustment either...apparently some anti seizure meds can cause mild memory issues. But these things he's experiencing are more serious. The neurologist wasn't even worried about the memory things until I kept calling and telling everything that was going on, and then the neurologist finally ordered the psych testing.
There have been no hallucinations.
My husband sometimes does remember later that he couldn't remember certain things , if you ask him. But not always. He knows his brain is not working right and he will say that frequently. He keeps asking me when he can go back to work, like a kid would do, over and over. The neurologist said our goal os 2 months to see if the med change makes any difference and if my husband is better to go back to work. But idk if he will be. Especially with memory stuff.
My MIL and BIL live the closest to us in the same town. My family lives in surrounding towns. But not far. MIL and BIL have taken my husband a few times for a few hours, and a friend has too. Which is nice. But its far and between. My family has not really been involved at all besides reading my group texts to update and then commenting on those.
We have filled out the paperwork on POA.
MIL,who is a former nurse, has been coming with to the appts for added input and support, but she will be 80, and doesn't always remember everything, so I have to explain multiple times to my husband and then repeat to MIL if she forgets. So that is tiring as well.
I had looked into if my husband is having Post Impairment syndrome because of his cerebral palsy and aging. Most cerebral palsy patients get that as they age.