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Natural Progression Of The Disease?

Natural Progression Of The Disease?

Dad is still in hospital after Sunday's violent episode. He had the usual medical workup, same things he had last month, to rule out underlying causes, etc. He is (still) medically well. But he went in there alert, ambulatory, and coherent (well.... for him.... he speaks with perfect clarity and diction, just nonsense at times...) and now after three days of being heavily medicated, he is slurring, barely responsive, just alert enough to try to stand up out of bed (and aggravated he is strapped… read more

A myALZteam Member said:

That’s a very tough question to answer. We went through about 5 months of severe agitation, with very little sleep, trips to the emergency room, just plain miserable. Then, barring any medical problems, I was able to wean her off of all sedatives. I took her in recently for a swollen leg and the found a clot in her leg and two in her right lung. She’s on blood thinners only now and is as sweet as an Angel. Eating well, sleeping through the night...and really, a joy to care for.
Our neurologist worked with us trying to solve the agitation. It took a few try’s to get things under control but looking back, I still wonder if it was just something my wife had to work through. I don’t think the “experts” really know either. They try things and hope they work, sometimes they do.
5 months seemed like an eternity but we’re in a very different place now. I hope you get through this quickly and there’s a better place on the other side.
Hugs for You and Dad.

edited, originally posted 4 months ago
A myALZteam Member said:

Evie, I think going to the residential facility is the best thing for your Dad at this point. It doesn’t have to be forever, but 3 days of heavy sedation followed by a day of normal meds is going to lead to an abnormal reaction, ALZ or not. I think Hospitals struggle with ALZ patients because the staff is not sure what is normal behavior within the spectrum of your love one’s personal manifestation of ALZ. Just being in the hospital for a totally unrelated issue can advance your loved one’s symptoms, but sometimes those more severe symptoms do subside. At the residential facility, you will have more input on medication and they will go through the process of figuring out what the next steps are. Don’t be afraid to be “pushy” in order to make sure you are included in the process. You and your sister are your Dad’s best advocates because you observe his behavior and progression more than anyone else! Talk to the doctor at the facility about what you would like - if getting your Dad to a point that he can come home and be calm under the care of you and your sister, let them know that is your goal. Like Mark said, this aggression may be a phase your Dad needs to get through and with the right balance of medication and time, your Dad may see the other side of this. Try not to project yourself too far in the future - there is enough to handle at this stage! Sending hugs and support!❤️

posted 4 months ago
A myALZteam Member said:

I have only had to take my Mom to the ER or Urgent Care a handful of times in the last six years - thank G-d - once for fainting and then a couple of times to get scans after falls at home. The nursing staff who helped us get settled asked some great questions like “How does your Mom react to pain?” and “How do you want to handle it if your Mom needs to use the bathroom?” But even with my Mom’s relatively calm demeanor and the fact that there was no obvious damage, the doctor asked if I wanted them to prescribe sedatives. It takes a special healthcare provider to see patients with ALZ as individual people rather than a diagnosis.❤️

posted 4 months ago
A myALZteam Member said:

Evie, just to back up what Mark and Rebekah have said. I have had three male friends who have been hospitalised after violent outbursts - one managed a 9 hr battle with care home staff, emt staff and police before he was subdued! In each case they were knocked down with heavy sedation. Hospitals are just not set up to cope with challenging behaviour and the pharma sledge hammer is the only thing that lets them get on with all they have to do. In each case it was a long way back either in secure hospital for two or residential care for the third. In time each found a new normal with appropriate medication. One went back home eventually, the others remained in residential care. I am sorry for your father’s experience and hope you may help him through to find his new normal. S.

posted 4 months ago
A myALZteam Member said:

@A myALZteam Member
Rebekah, you mentioned something that is important. When I brought Vilma to the ER this last time, the Doctor was peppering me with questions. I was simply trying to answer each one as they came, but I finally realized he was trying to find out what Vilma’s “normal” was. So I told him, that a few days earlier, I could make her laugh. I could see the lightbulb light up. He saw how she was and couldn’t imagine getting her to laugh. He then knew he was dealing with a significant change, and something serious caused it.
We (me) often times think that the medical community isn’t geared for dealing with dementia patients. In this case it was me that wasn’t communicating important information so they could get a better handle on her condition. Fortunately the doctor was a pistol, and he pulled it out of me.

edited, originally posted 4 months ago
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