Here we are at the rage stage, now with hallucinations

GothicGremlin

So much has happened - none of it good.

Peggy had been falling a lot. This started about a month ago. After meeting with a neurologist, an outside RN, and an occupational therapist, we now have a hospital bed for her and a transport wheelchair. She doesn't use the wheelchair all the time, she only uses it when there's no one to walk with her. She can't really walk by herself anymore, the danger of falling is too great. She kind of leans and then just tips over. Her doctor said that sometimes people with Alzheimer's develop Parkinson's-like symptoms. It's not true Parkinson's though.

A little more than two weeks ago, we entered a new phase. Rage + hallucinations. I'm exhausted. I can only imagine how this feels for Peggy.

A week ago, Monday, Peggy was completely inconsolable - and angry. She didn't like her hair, or the clothes she was wearing, people were being mean to her, and there was some guy in her space and she kept telling him to go away. Of course she looked perfectly fine, and there was no one in her space.

One of the staff there suggested going outside for a change of scenery, in hopes of breaking the cycle. It did the trick. Whew!

Peggy's friend M and I talk frequently and compare notes and strategies for what we think might help.

M's recent experiences are this (from an email he sent me): She was imagining a woman the entire time I was there and having a consistent argument with her. I tried to discover "who" it was, and I only got the usual "you know, I have told you before", etc.

So, we did very little walking, which was mostly a shuffle or me pulling her to keep going. I decided it would be best to stay in her room, away from others. I played the first cd/mix tape the whole way through before lunch. She spoke nonsense to me all morning and argued with this woman the rest of the time. Any distractions I tried to do, were not working.

Ugh. M, staff, and I have been playing '80s "mix tapes" (CDs that I have burned from her vinyl collection) to distract Peggy. So far it's worked like a charm. Tonight I'm going through her Cyndi Lauper and Pat Benatar record collection and I'll burn a couple of more CDs. Duran Duran and Fleetwood Mac are already in the bag.

Also M told me this -- and I haven't seen this when I've been there, but I'm sure it's happening:

She has excessive "knee shaking" energy now. I have noticed the last couple of times. When she is just sitting, often on the bed, she will "shake" one or both of her knees, together or separately, very rapidly. It is like a new nervous habit I had not seen before.

So that's where we are. Any thoughts for what I can do better? Has anyone seen the excessive knee shaking? Something like it? I'm still not sure where we're going to end up medications-wise.

M1

GG im so sorry, it does sound like her disease has accelerated. I would bet the shaking movements are related to the Parkinson's like symptoms too, all increased motor involvement. But- is she on an antipsychotic? Rock and a hard place, because she may need them for the hallucinations, but they can cause motor symptoms too (tardive dyskinesia).

Is it too soon for hospice? Maybe not, if she's really getting where she can't walk. Might not hurt to ask, i can't see much downside.

Ed1937

Sorry, I don't have anything constructive to add, but just wanted to let you know we care. I hope Peggy can find something that helps.

Vitruvius

My DW [with Semantic Dementia] has developed shaking which her neurologist called Parkinsonian symptoms but noted it was not to be confused with full blown Parkinson's. DW also now has a hospital bed and transport chair. She can not walk without the support of two people. Her neurologist tried two different meds in succession for these symptoms but discontinued each as they caused other problems such as increased agitation and even a bit of aggression. DW has had hallucinations for some time but not as involved as arguing with someone.

DW is now on hospice since she has started having problems swallowing. But I gathered from the hospice folks that swallowing was not the sole reason for accepting her, it was just the thing that caused her neurologist to recommend it.

EDIT: I also wanted to mention that my DW also started falling. But it wasn't the kind of falling like when you stumbled, for her she also leaned to one side and sometimes she just crumpled to the floor. Fortunately this seems to have lessened any injuries which ended up as just bruises.

Jgirl57

So sorry GG that this rough patch continues. My HWD leans and tips over after about 20 minutes of walking. Hugs to you, M, and Peggy as you navigate the horrible rage and hallucinations.

GothicGremlin

M1 - A sobering thought about hospice, but one I probably should consider. You're probably right about the Parkinson's-like symptoms and the shaking. I should have thought of that. She is on an anti-psychotic, but only on a 'as needed' basis. Maybe time to rethink that..

Ed - Just caring is enough 🙂 I appreciate it.

Vitruvius - Your DW's experience is so similar to Peggy's. Peggy also has primary progressive aphasia (logopenic - like CStrope's partner) - a rare bird, but similar to the Semantic Dementia. And the way she falls is also similar to Peggy. We can usually spot when it's going to happen and then intervene. It's the weirdest thing - she leans, leans, leans, and then crumples, like you describe.

Jgirl57 - Thank you for that. The hallucinations I can just roll with, but the rage is something else. There's just no consoling her when she's in that loop. I'm so sorry about your HWD. It's so hard when they tip over like that.

Chammer

GG, not sure what the "knee shake" looks like but my DH (cognitive and personality changes most likely due to alcohol and maybe some vascular disease) is diabetic and has neuropathy in his legs and feet due to DM and ETOH. He also has diabetic radiculopathy along with a bulging L5 disc. When sitting, he rocks his knees back and forth rapidly. He does it unconsciously now, but is aware that he does it saying it helps with leg pain. When he lays down he wobbles his feet in a similar fashion. There are machines that create similar movements or vibrate that apparently fake out the misfiring damaged nerves to think they are already busy so they don't need to send a signal to the brain that something bad is going on. He will also rub something with his finger tips for the same reason. Does Peggy have any neuropathy issues? Could be related to something like that if so.

CatsWithHandsAreTrouble

Gothic, so sorry to hear about your sister having trouble again. I was thinking about her at work yesterday wondering if the situation of having your uncle being eaten had been resolved...

I'm sure you have already checked, but to be sure, has your sister gotten testing for a UTI? My mom's mood and balance had been off for a while and her doctor suggested it was a UTI and not from her med change. Got results that said it was and we just finished treatment for that.

It's so good that Peggy is surrounded by so many who are looking out for her. I do hope you and M can figure out things to help her. Hugs to y'all. Stay strong, I'm rooting for you.

For My Sister

Hello GG. This is my first time writing. You and I are in identical situations. My younger sister Nancy was diagnosed with early onset Alzheimer’s in 2017 at age 59. After living with me for several years, she has been living in a memory care facility for the past 14 months. It has been a rough road, and recently her disease has began to progress. She had her issues with leaning and falling, and now she cannot walk, and is in a wheelchair all of the time. She has occasional episodes of anger.She has aphasia, so I rarely understand what she’s telling me, although I pretend to. Several months ago her physical therapist at the facility suggested hospice. I agreed, and it has turned out to be a wonderful thing for Nancy. There are now more people caring for her on a daily basis, she has a nurse visiting her several times a week to check on her, her meds are checked and updated as needed, she receives anything she needs by me just asking. There are more hands caring for her now. And Medicare pays for it. GG, I strongly recommend getting Peggy hospice care at her facility. It will benefit her, and it will put you more at ease knowing that she is getting that extra care.

MN Chickadee

A long shot, but have you tested for UTI? My mother's first symptom was always falls and she would also slip out of chairs onto the floor, it's like all muscle memory failed with the UTIs. However I do remember the stage where there was no UTI and her gait just changed and all aspects of movement became a challenge. It seemed a bit sudden and devastating. Keep up the music thing; it can do amazing things to the brain, and probably prepare for a crappy new phase of this disease. I'm sorry you and your sister are going through this.

GothicGremlin

For My Sister - both you and M1 have suggested hospice... it's a scary thing for me to contemplate, but I will definitely look into it. I was just talking yesterday to my s.o. about how I wish the visiting RN could stay on with Peggy, it did her so much good. Well, if I can get hospice going, maybe that can happen.

And yes, it really does sound like you and I are on parallel paths, and not happy ones. If it's worth anything I do pretty much what you do. Peggy is word salad-y most of the time, so I'm playing word association in my head and guessing at what she's getting at. I do a lot of pretending to understand, as well as reading her mood and either agreeing with her or sympathizing with her. I'm so sorry that Nancy is going through all of this.

Cats and MN Chickadee - I've had Peggy checked (several times) for UTIs and she always comes back negative, so it's not that. Thank you for the good thoughts Cats, I need them! And MN Chickadee - the music has been so good for her! All of that '80s music makes her so happy. 🙂 Not looking forward to a crappy new phase of the disease, but I know it's probably lurking around the corner waiting to ambush me when I least expect it.

Chammer - the only neuropathy I can think of (and it's probably not even a neuropathy) is that she has arthritis in her back. So it's probably not that?