Mum with Alzheimer’s in trance like state, cannot stand up straight, leans back and to the side. What is happening?

Thank you Dorian. Your answer has helped me.

Sounds to me like Leftward Leaning and the fugue state that goes along with dementia. Both are unfortunately common and very difficult do watch. My mother had been leaning for just over ten months now. We prop her up with pillows and cushions, adjusting her to an upright and comfortable position. The fugue state can be very difficult to adjust to, but she's in there. Her brain is just taking a rest. Talk and interact with her as you normally would, offer comfort and love. I honestly think it still reaches them. Looking out and beyond is just another part of this insideous disease. As far as her fear expression, it could just be that her resting face appears fearful. It could also be confusion as dementia patients seem to regularly be trying to work things out, dismayed that they cannot make sense of this world that is being stolen from them. It sounds like you are doing all you can for her. You are doing an amazing job and obviously love your mom very much. That is everything.

El: You're welcome. Good.

I've had the long talks with my Adult Children and also with my 11 yr old daughter on a much lighter scale about my wishes. I believe they along with my DW understand that I do not want them watching me waste away when it comes time to institutionalize me.
I have expressed my hope that they will put me someplace at least 100mi from where we live to make it inconvenient for them to spend much time visiting. I don't want any feeding tubes, life support, defibrillators, bringing me back. I don't want to drag this out for my DW, Children or myself. I want them to get on with their own lives and enjoy living for the living.
I have a strong faith which we practice weekly and many days in between. I want my days to end naturally and go stand before my Redeemer for his judgement. I have confessed my sins as I can remember them, and try and do penance, when I know I've sinned. I encourage all to have these conversations sooner rather than later. I'm happy I've had mine while still highly functioning.
All our legal affairs have been tied up in a Trust, with DPOA's, Medical Directives, Pour Over Wills, etc., set up by an Estate Attorney, and with an opinion by an Elder Law Attorney in our state that said, everything is up to date with current state laws. Please do this for yourselves.

Her Dr. should ask Hospice to evaluate her ASAP, as her body may be shutting down and the muscles tense from lack of enough oxygen. They can prescribe meds. that will help her body relax and make sure she has no pain or discomfort. They are wonderful and they will comfort you as well as your dear mum. My mom passed earlier this year and went through very similar things your mum is going through.
God bless and guide you

You might want to take her to her neurologist for a medication check.

Thank you Portmarly. I’m sorry about your dad. I think you have made wise decisions concerning his future care.
My mum was never the type of person to discuss dying or anything connected with it, hoping that if she ignored it, it would not happen. I have PoA for welfare and knowing my mum as she was when she was young and fit, I am sure she would not have wanted to suffer and have everything done for her by others as she has now. We can rule out a UTI because the Nursing Home always test for this as a matter of course when something like this happens and also regularly as well.
Your minister is very wise in her suggestion to turn all noise making monitors off. There is indeed holiness in the quiet at such a time.
Thank you again.

my mother leans wayyyyy back when she walks (or attempts to anyway)- She is end stage Parkinsons. Also leans. Not sure if it is the disease progression or her body failing. Plus her vision is now completely gone -It is horrific to watch as she was hiking the Blue Ridge mountains and tent camping just 8 years ago at age 80. Try to stay calm and reassuring if she appears scared. My mother has been petrified /very scared - always was an anxious person, and the other day we had a heart to heart during a very lucid moment and now she seems very peaceful. I know the end is coming very soon. Praying it is peaceful. She has had to endure so much

I agree with Cetude's thoughts that there could be underlying medical causes for your mum's current state. My dad's LBD & Parkinson's is not as advanced as your mum's but I have observed similar symptoms with the glazed stare and the leaning. In one instance, it was related to a UTI, which caused toxic encephalopathy. He was treated with IV antibiotics and things reset themselves back to where they were. In another situation, it was determined that the damage in his brain had progressed to the point of him developing a seizure disorder. Anti-seizure medications have brought that under control.

Even though my dad is 95 1/5, he is aware of what is going on around him and has expressed some preferences about his future. Because he has been in eldercare for almost six years, he has seen the very sad progression of dementia and said he dreads living long enough to go through that decline. We have a very candid relationship with his doctor who has said that he faces a particularly difficult future with his double diagnosis and would be better off dying from a medical event. We have all agreed that my dad should be treated with medications that sustain his current quality of life, but, in a medical situation, we should be prepared to make a decision to forego treatment in favor of Hospice care and allowing nature to take it's course. My dad has excellent health insurance which also pays for an ambulance ride to the hospital. Rather than place me in the position of having to make what is really a medical evaluation that I might second-guess for the rest of my life, we've agreed that I will send him to ER for an evaluation of his condition. Then, based on what they find, we will make the decision whether to treat. If it involves a hospital stay with IV chemicals to improve him, then it's acceptable to him. If it involves invasive diagnostic tests, invasive treatments, a long rehab, or a condition from which he can't return to his current quality of life, then we will switch to Hospice.

I surmise you may not have had the opportunity to have such clarifying conversations with your mum which would bring you some comfort right now. I guess the point of my story with my dad is that there is a point where knowing what's wrong may have no therapeutic value for your mum's state. I think the suggestions to focus on her physical comfort and provide whatever verbal reassurances she might respond to is wise. I might add to their ideas that some people respond to music they have loved in the past by being calmed, or at least distracted by it. Our minister often suggests that when we have determined to allow nature to run its course, that we ask to have noise-making monitors turned off. She reminds us that there is a holiness in the quiet time spent with our loved one as we accompany them to the end of their journey.

Blessings.

It could be the ending coming Els1eL and I'm sorry to tell you that. I didn't learn that the leaning back is the muscles going at the end - Hospice told me after my DH had passed while we were awaiting the undertaker.

Glazed eyes can be a sign of overmedication but towards the end, when the body starts shutting down, their vision can also go.

To calm her down, talk to her and tell her that she will most likely be seeing people that passed before her and that you know her time is coming. Tell her not to be afraid as her loved ones will come for her. I started telling my DH this the first time he was sent home to die and I continued for the 2.5 years we had left together.

There can be a tendency to lean towards the side and or backwards - it's the body trying not to fall. But you can tell her that you understand and she needn't be afraid that you will join her again when your time comes.

It doesn't matter if you, or she, believes this. My DH had lost his faith but I know for a fact that he saw people from his past. He saw his first wife, I heard him greet her. He saw his oldest brother, he called him by name. And his eyes were all glassy/misty and he kept looking all over the ceiling and I do believe he saw something or someone or a lot of someones.

Just keep telling her that it is ok and you are there and no harm will come to her.

I am sorry your are having to deal with this, it is a scary time for both of you. But later you will be so glad you were there to witness the passing, whenever it happens.

could be a lot of things. Stroke. UTI. Pneumonia. Kidney disease. Or accumulation of psychotropics that caused drug-induced encephalopathy..if she is insulin-dependent maybe her sugars are too high. or it could be the processes of dying..but point is there are many, many causes that can attribute to her behavior.

My mom is going through the same sort of issues right now. It's so hard taking care of her alone. I'm her only caregiver once I get off of work and all weekend. I know things are probably coming to the end and of course I'm not ready. It's just so much and so hard to deal with.

What a lovely explanation Margaret. I will indeed try this. My father is not religious, being agnostic but Mum went to church and was a member. I used to get the impression it was more out of fear than a strong belief though.
She cant converse much but I think she will get the idea. She sometimes becomes upset and shouts out that she is, “Fed up waiting for this funeral!” so I think she is aware she is slowly dying.
Your explanation makes so much sense to me and that was how I felt when my younger sister died from breast cancer aged only 36.
I’m sure there is something in what you say.
Thank you.

One suggestion from another poster with a difficult father in shared care, was to ask the staff to bring mother to another area so that you can talk privately to her. They might be able to think of a reason why your father doesn’t come.

A few days before the end, my mother asked me what I thought happened after death. She wasn’t religious. I said that the story I found most comforting came from Australian Aboriginal people I knew, that soon after death the person’s spirit was very close and watching, that as time went on they drifted off into the universe, but that they would still come back and be close to you at times when you needed them. After she died, it was actually the way things seemed to me, even though I didn’t ‘believe’. Perhaps you could bring something like that up with an introduction about how the topic came up in conversation, or in something you read. You could even put it in the context of disagreeing with religion, which might not annoy your father so much. It helped my mother, and me too.

Best wishes at a difficult time, Margaret

Thank you Jessica. I didn’t think of that. Will give it a go.

One of the knee separating cushions for sleeping really helped my mom to sit up straight during the day.  She sleeps on her side and having that cushion in between her legs kept her back/hips straight while sleeping for 12 hours.  Mom is in the beginnings of Stage 7.  I don't know if that would help your mom or not but it's something to think about.

I am so sorry that your mother looks frightened as things deteriorate. Can she still understand you, even though she can't talk with you? You must reassure her that she will be looked after and kept safe. There is no harm in saying that the doctor thinks they may have done the wrong things with the drugs, and they are expecting her to get better in a couple of weeks. For many people, this is the right time to suspend any doubts about religion and talk about going to be in heaven with the angels and all the people she has loved before.

Here is what I found


Many dementia patients lean toward one side or the other. It is not necessarily associated with Parkinson's (or Lewy body). And it can be one of the early signs of dementia. See:

http://alzonline.phhp.ufl.edu/.../EarlySignsFeb08.pdf

It may also be a side effect (called "Pisa syndrome") of some medicines, including cholinesterase inhibitors, antipsychotics, and antiemetics.