looking for advice regarding:wife's progression (10 years)

Checking for UTI is a good idea in my experience with my mother, who had dementia. Had your wife taken any medications?

My mother progressed in the sense that she might have a sudden burst of anxiety about a car she no longer owned being parked at some store. The rest of the time she would be seemingly okay, relatively speaking. I wonder if your wife is having some form of sundowning. The time before bed can be a vulnerable time for rationality!

Hope the doctor is helpful.

I had a similar experience, checked patient for UTI and was negative, but we (lay people) found that it was simply some missed doses of medication, not another step in the progression as one doctor said!

Hello. It is has been a while since I last participated in the forum but this post really caught my eye. I am 5 years or more in this journey and have experienced all of what you describe. My wile has no idea who I am and I regularly get sworn at - his morning I am a mean man and a bastard. Yesteday I was just a bastard. She constantly says she wants to go home (18 years in current home) and constantly wants to be with her mom - who died over 25 years ago. I am just a man who does all the jobs and she wonders how many other girls I work for. Her mood swings are horrific and can change in seconds. As pointed out these changes are common at bedtime. We have seperate rooms but I make sure she is in bed and settled before I go to my room. I could write a book on this journey but you get the picture. Two weeks ago she went completely off the wall and I had to call 911 as i could not handle it anymore (both 81 years and married 60 this year) and I just wore out, could not take it anymore. She went to hospital and their test confirmed she was healthy except for loss of memory and sent back home. We are coping but it gets more challenging as each day passes. I don't have any suggestions for you except hang in there and pray for help. Sorry.

@elsmore do you have a support group? Can you afford respite? Have you considered a hospice evaluation? My mother qualified for hospice and had those services for 3 years, off and on. We got an aide 5 days a week, a nurse, social worker, volunteer, and chaplain. Too many people think hospice is for imminent death! Hospices vary on who qualifies but it is worth a try.

I wholeheartedly agree that getting a UTI is a must. Has your wife received a diagnosis other than dementia? There are so many different types of dementia, and they all have different symptoms. Each dementia can have different ways to control the symptoms. For instance, medications that would be good for a patient with Alzheimer's can be detrimental to a person with Lewy Body Dementia. I would also recommend getting a definitive diagnosis.

I agree about considering medications. My dad takes 2 of the meds for Alz and they do help. We tried discontinuing them once and it wasn’t good. Returned to full dose and he improved. For him, they work well.

Also, evaluate for anxiety/depression, I don’t know anyone with dementia who doesn’t have anxiety and depression. Medication can help with that too.

Also, with dementia patients, they can often become agitated. (Safety proof house by removing scissors, sharp instruments, firearms, etc.) You can look it up as it’s quite common and can be quite pronounced with certain stages of their illness. There are specific medications that treat dementia agitation and some others are used with success and prescribed off label. I’m not normally a big advocate for meds for everything, but when it comes to dementia it’s often used because the patient struggles to process information and if they are able they soon forget. So, trying to keep them comfortable becomes a priority that often is only possible with medication. Even then, there is often repeatings, obsessions, fixations, worrying, sleep disorders, etc.

I’d also add that trying to manage the full time care of a person in the home with significant dementia is usually not sustainable long term. I was surprised to discover the low availability of spots in our area for placement. Intending to ask for hospice assessment too. Any help you can get is advisable, even if they protest. I get talk therapy for myself and it’s very helpful for me. I highly recommend it. I do mine online.

How are things going today?

@elsmore i feel like I'm reading my story. I am going thru or have gone thru most of what you have mentioned, I am worn out too but i just keep trying to hang on but it's hard. I just keep reminding myself that this is not my husband, but the awful disease but it doesn't make it any easier to deal with,
I pray for all us caregivers!!!