Recently diagnosed

PaulaT

My husband has recently been diagnosed with Parkinsonism and Lewy Body dementia. It has been a few years of hospital stays with lots of different diagnosis. I am somewhat relieved to at least know, but heart broken. It is hard because I'm not sure if my husband is in denial or doesn't understand what is going on. The neurologist didn't really push the "dementia " he just said he had some cognitive impairment. The Parkinsonism is really what he struggles with now, he struggles with walking and mobility . He has to use a walker or wheelchair. He goes to physical therapy 3x a week with not much improvement.

My concern is that we haven't talked about it, we basically act as if nothing is wrong other than the obvious mobility, incontinence and overall declined health. I feel like I'm in a bad dream and will wake up and everything is going to be normal. When he talks about it he acts as if he is okay other than this "walking problem". He tells everyone " I will just be glad to get back to normal ". I feel like he should be aware ( maybe he is) that things aren't going to be normal. I feel nuts just acting like we are living a " normal" life. Nothing feels normal anymore.

Iris L.

Welcome Paula. Your husband has anosognosia. He truly believes he is fine. This is not denial but a characteristic of dementia. You will learn the work-arounds from the members here. There is a thread titled "Anosognosia" by Butterfly Wings, she posted a link to a great article about dealing with anosognosia.

Iris

Howaboutnow

I’m sorry you are going through this. “I feel nuts”….i know you do. That feeling of I’m-on-my-own will grow as the disease(s) progress. Being the one living in reality means you carry the weight and responsibility of everything while also becoming more isolated emotionally and in every way.

In the beginning of my DH dementia, he was aware of diminishing abilities and frustrated by it but he had no idea the depth and certainly didn’t understand the prognosis. I think my DH outward behavior of acting like it wasn’t that serious was a combination of purposeful denial and sincere inability to comprehend due to brain damage. I remember being scared and angry in the beginning especially (but still now too). he wasn’t worrying about anything while i was doing more and more while also still working. DH seems not to notice or care much less acknowledge it. I won’t say that gets easier to accept, the lack of empathy, but you will get used to it.

I don’t know, does agnosognosia offer compassion to the one with the disease? Maybe. Not sure where compassion for the caregiver comes in…..but this group most certainly does help.

jfkoc

This is the definitive book;

Dementia with Lewy Bodies and Parkinson's Disease Dementia: Patient, Family, and Clinician Working Together for Better Outcomes 1st Edition

by Dr. J. Eric Ahlskog MD PhD 

My husband was MCI>Parkinson's>Lewy Body Dementia. The meds were difficult and monitored carefully. Please feel free to contact me.

-Judith

PaulaT

Did your LO blame you for things in the beginning...its something all the time now if he can't find something..he blames me ...I must have put it somewhere he can't find it....If he falls its because I was in the way ( actually I was trying to keep him from falling)..He is constantly blaming me for his issues. Even so far as the other day I was explaining why some of his medications had changed. He gets very confused with details...he was getting frustrated because he didn't understand. He said I was making no sense and needed to get my s@#* together before trying to explain anything else to him. I had to laugh but it is frustrating when I am constantly being blamed for things when in reality I am trying to help him.

Ed1937

"its something all the time now if he can't find something..he blames me ...I must have put it somewhere he can't find it.." Paula, if you were making dinner, and had a knife on a meat cutting board, then you went to the fridge to get something, then came back to get your knife, but it wasn't there, wouldn't you ask whoever was there what they did with it? Whatever he loses, he doesn't remember moving it. We have to look for reasons why they do what they do. We have to think hard at times because if we come up with a reason for their actions, it makes things easier for us, which in turn makes it easier for them. We won't always find a reason, but we have to try. We have to remember that their brain is not fully functioning. It is not their fault, although it might seem like it. That's why we have to find the reason behind their actions.

"If he falls its because I was in the way ( actually I was trying to keep him from falling)" This is his perception, even though it may not be factual. It's part of the disease.

The more kind we are to them, the more they will trust us, and the fewer arguments we will have. But if we butt heads with them, we are making things harder for ourselves. We have to change our thinking. They can't do that.

toolbeltexpert

Paula everything you've described about your dh is " normal" so to say." You are not nuts though it feels that way and many of us have described this as a bad dream and we want to wake up and it's all better, but it's not. You will learn lots here about how to deal with these types of behaviors, it will get easier. When you can, look up teepa snow or care blazers on YouTube these are experts in dementia care and help you to deal with this disease. You need to remember to take care of you as well so you can take care of him.

Others will give you advice about seeing an an elder care lawyer. If you haven't gotten a dpoa I wouldn't wait.

Keep posting as needed someone here will be able to help. Your not alone in this.

Stewart

jfkoc

Get two pill boxes. Fill them once a week then take your meds together. No discussion, You can put Tic Tacs in your box and swallow or not.

When he blames you simply say that you must have moved it and that you will help him look. Again, no discussion.

Discussion gets you nowhere. Explaining, reasoning and arguing need to stop also. All they do is make things worse and no one needs worse.

Iris L.

Here is my story. In the morning I make a nice latte for my afternoon snack and put it in the refrigerator to get cold. Yesterday I went to get my latte, no latte in the refrigerator, no latte anywhere. I even looked in the bedroom and in the bathroom and on the balcony, I looked on every surface. I finally discovered the empty latte cup in the dish drain. Evidently, I had drunk the latte while it was still hot and never put it into the refrigerator. I didn't remember drinking it at all, only the empty cup was my proof. There was a time when I would have wondered if someone had come into my locked home and taken my latte. But I don't have those strange accusatory thoughts anymore.

The point I am trying to make is that accusatory thoughts when something goes missing are not uncommon, in fact, are probably quite common for people with a degree of serious memory loss, even me.

Iris

PaulaT

I am always kind to him he is my husband and I love him. We never argue or "butt heads". I reassure him the best I can. My point was not to seem angry with him. I was simply venting in a place where I felt it was safe.

Ed1937

"I was simply venting in a place where I felt it was safe." And it always is safe here. I sincerely hope that what I wrote didn't upset you.

ImMaggieMae

https://alzconnected.org/discussion/comment/183026#Comment_183026

I wonder if there are any of us on this awful journey who didn’t feel anger along with all the frustration in the early days. It’s one thing to read about this disease and quite another to be living it. It takes a long time to really be able to understand how helpless our loved ones are to change things. In the early days I kept having this idea that I could teach him work arounds to some of the disease related behaviors. It was hard to wrap my head around the idea that this person that I loved, who looked the same as he always did, was changing in ways that I couldn’t fix or even really understand no matter how much I tried. He no longer had the ability to learn or to change back to the way he was. We finally get to a point where we realize that we are the ones who have to change. Sometimes it feels like living in a never never land. We find ways through our love and compassion to make it work and navigate this never never land. That doesn’t mean our frustration goes away. Mostly it gets worse. But it becomes hidden. And it becomes isolating. Paula, you will find that you are safe venting here. Most of the people here are your partners in navigating this strange, horrible, frustrating journey. You can’t fix this, but people here find so many workarounds to make things better in many ways.

JJAz

https://alzconnected.org/discussion/66326/recently-diagnosed

Hi Paula,

Lewy Body Dementia is a very difficult type of dementia, but one specialist described it as the most treatable type of dementia with proper medications. We have an active online forum available for LBD spouses with lots of good information and you can join by googling LBD Caring Spouses.

For others who may be wondering if their spouse might have this type of dementia, look for these specific symptoms.

Movement symptoms of Lewy body dementia

One of the core features of LBD is parkinsonism, which is an umbrella term that refers to brain conditions that cause movement issues.  Some people with LBD may not experience significant movement issues for several years, while others may experience them early on. At first, movement symptoms may be very subtle and easy to miss.

• Slowed movements (bradykinesia).
• Rigidity or stiffness.
• Tremors.
• Balance problems.
• Shuffling walk.
• Difficulty swallowing (dysphagia).
• Reduced facial expressions.
• Frequent falls.
• Loss of coordination.
• Smaller handwriting than what’s normal for the person.

 

Cognitive symptoms of Lewy body dementia

Fluctuating cognitive (mental) function is a relatively specific feature of Lewy body dementia. A person with LBD may experience periods of being alert and coherent in between periods of being confused and unresponsive to questions. This can change from day to day or within the same day. Other cognitive symptoms include a decline in:

• Planning abilities.
• Problem-solving skills.
• Decision-making
• Memory (Unlike in Alzheimer's dementia, memory problems may not be present at first but often arise as LBD progresses).
• Ability to focus.
• Understanding information in visual form.

 

Hallucinations & Visuospacial

Visual hallucinations, or seeing things that aren’t there occur in up to 80% of people with LBD and often (but not always) early on in the condition. Other types of hallucinations, such as hearing or smelling things that aren’t there, are less common than visual ones but may also occur. Other visuospacial difficulties are also common:

·      Decreased depth perception

·      Trouble recognizing familiar objects

·      Impaired hand-eye coordination

 

Sleeping problems in Lewy body dementia

Sleep disorders are common in people with LBD, especially rapid eye movement (REM) sleep behavior disorder (RBD). This condition involves frequent movements, such as flailing or punching, with yelling or speaking while sleeping. People living with RBD often have difficulty separating dreams from reality when they wake up. Other sleep issues associated with LBD include:

• Excessive daytime drowsiness.
• Changes in sleep patterns.
• Insomnia.

 

Dysautonomia in Lewy body dementia

Dysautonomia is a general term for a group of disorders that share a common problem — that is, an autonomic nervous system (ANS) that doesn’t function as it should.

The ANS is the part of your nervous system that controls involuntary body functions (functions you don’t consciously control) like your heart rate, blood pressure, breathing, digestion and many more.

People with LBD can experience issues with their autonomic nervous system, which may result in the following symptoms:

• Changes in body temperature.
• Blood pressure drops that appear to be falls.
• Dizziness.
• Fainting.
• Sensitivity to heat and cold.
• Sexual dysfunction.
• Urinary incontinence.
• Fecal (bowel) incontinence.
• Constipation.

 

Mood and behavioral symptoms of Lewy body dementia

People with LBD may experience behavior and mood changes, which may worsen as their thinking abilities decline. Symptoms may include:

• Depression.
• Anxiety.
• Agitation, restlessness or aggression.
• Delusions (strongly held false beliefs or opinions that have no basis in reality).
• Paranoia (an extreme, irrational distrust of others).

 

Also note that up to 50% of Lewy Body Dementia patients have been determined to also have Alzheimer’s or another type of dementia. Additional information about diagnosing Lewy Body Dementia from Alzheimer’s Disease is available at lbda.org