Mom's been diagnosed with Lewy Body Dementia. How do you cope with the new personality?

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My Mom has had short term memory loss for years. 5 months ago, her symptoms profoundly changed. She experienced "night wandering" (stayed up all night), slept all day, hallucinated (that other people were in the house; that they were stealing her money), experienced delusions of being ill, couldn't/wouldn't eat, lost weight, was incontinent, fell frequently, had hand tremors, walked with a shuffle, unable to recognize her family. After several trips to the ER, one hospital admission and multiple tests, she was diagnosed with LBD. I spent hours researching everything related to LBD. My brain understands the disease, but my heart still struggles with the loss of the Mom that I knew.

I moved into my parents home to help my 87yo father care for my 86yo mother.
For the most part, I have dealt fairly well with the LBD symptoms. I am the only surviving child. I have no other family to help. My father is resistant to hiring respite caregivers, so it's just me and Dad.

Honestly, I'm starting "wear done". I finding myself hoping for a just a few hours of normalcy. Then, I feel guilty because I know this is a disease and not my Mom. It's like this never, ending roller coaster of emotion. For all of you who walked this path, how did you cope? I need your help.............


Lewy Body is often called a roller coaster disease. In the final year I called it the pogo stick disease because my husband's symptoms went up and down and up and down with no transition in between.

Like your mom, my husband had started having mild memory problems and then suddenly he had a total meltdown and the symptoms you list were suddenly there. He had had a neurological exam in May with the conclusion that he was "normal for a man his age." and the meltdown happened June 6. It was truly sudden onset! I think it is more common to develop gradually, but at least one other person in my support group has a loved one who experienced the sudden profound change. It is a shock, isn't it?

The theory now, in hindsight, is that this sudden onset may be caused by the autoimmune system's reaction to the protein deposits it perceives as foreign bodies to be fought off, and the resulting inflammation of the brain. Did the diagnosing doctor make any mention of this? I wonder how widespread this theory is.

There is less brain cell death in early LBD than in, say, Alzheimer's and that means there is a reasonable chance that drug therapy can help. For example, Aricept was developed for Alzheimer's but it is much more effective in LBD.

I say my husband had 8 years of mild LBD and 1 year of very severe LBD -- and the severe year came first. It took a lot of time to try drugs for the symptoms, one at a time, gradually increasing the dose and watching for reactions and letting it stabilize before moving on to the next symptom. But by the end of the first year he was much more functional, much calmer, with no hallucinations or agitations. I'm sure this was the result of his treatment plan as well as the brain inflammation subsiding.

Is your mother on some drugs? Have any of the symptoms improved?

I'm curious that Mom didn't recognize you. That is not a common symptom of LBD. (Obviously it can happen!) My husband had maybe 3 days of lack of recognition.

So, how to cope.

I think you have taken a critically important first step. Learn as much as you can about the disease. There are several good non-technical books for and by caregivers of people with this disease.

A book you might not have come across because it isn't specifically about LBD is "Loving Someone Who Has Dementia" by Pauline Boss. This isn't a practical "how to" about dealing with odd behaviors, etc. but it is a clear compassionate look at the emotional roller coaster we caregivers ride. We love someone who is both there physically and also gone from us. She gets it. Seeing it so clearly explained was very helpful to me.

My mantra for many months, perhaps years, was "This is not my husband speaking. It is the disease."

Cherish any moments of "normalcy" that occur. Know they won't last forever, but enjoy them while they do.

I think some respite is absolutely critical to coping skills. You have to get away from the situation regularly to recharge your batteries. Wear your father's resistance down, because neither he nor you can retain your sanity without some breaks.

Go into Mom's world. Don't insist she live in yours -- she can't. You can cope more easily if you don't try to argue, reason, or explain to talk her out of her delusions. In LBD you may have periods where explanations do seem to work. Take advantage of that, but don't expect the apparent understanding to necessarily last.

I learned to cope with the on-again off-again memory loss by writing things down for my husband. He welcomed this. When he was well enough to be left alone for brief periods I'd leave a note: "At Target. Back by 3:00"

I can see you are working very hard at accepting your mother's dreadful disease. Accept your own reactions, too. It is OK to struggle with the losses. It is OK to mourn and then go on.

Sorry to have rambled so much. I dealt with LBD for nine and half years, and I know the pain and confusion at the beginning of the journey. Best wishes to you and to your father as you care for your mother.

My mother has not officially been diagnosed with LBD. But, she has all the signs. My mom lives with me. We are in a full swing of the desease. Its hard. Im the only one she really relies on. My brother is helpful. But, he has is own battles. So, I dont lean on him too much. But, he has a good ear for me to vent to. He also puts mom in her place, when I cant.
I have also taken up working out. Even if its just 15-30 minutes a day. Its a great stress reliever. My talks with God are becoming more and more important. Prayer is powerful. Take care of your own mind, body and spirit. You will feel at a loss and you need all those to get you through.
Take advantage of getting out with friends. Laughter is needed. I adore my friends and family. They really can't help me other than keeping my spirits up.
Good luck. My thoughts and prayers are with you.
I ended up referring to my mom in my own mind as if I had two moms, one past and one present and just rolled w the flow. Two different personalities but I enjoyed having her however I could. I know its very hard but you can do it. Love will prevail and be there to help you through this. huggs and good luck.
Seacare, Mom was diagnosed with PD over 12 years ago. It took about 5 years for the dementia to start taking over. Mom would call me and sibs at work and say she needed to go to the doctor or ER. She would have major anxiety and panic attacks and could not do the everyday tasks she had always done. It came to a point where I had to quit my job to take care of her 24/7. She was getting UTI's regularly at the time and we had no idea how badly that affects the elderly. We thought she was addicted to the zanax she was prescribed for anxiety and she spent a week in the hospital psych ward twice because of her behavior. We had no clue that the UTIs were making her such a mess!
Needless to say, after 5 years of caring for Mom, I have seen it all! She has been in a wheelchair for almost 2 years as she cannot walk alone without falling. She rarely recognizes people and has to be washed, dressed, and fed because she gets distracted by the slightest thing every other second. She is super OCD so she is in constant motion and never sits still. We have had to Mom proof the apartment so she can't grab onto anything in her path. She recently got a high tech wheelchair that we can recline back when she is not cooperating. It has a nice big tray that keeps her busy too. One of the hardest things to deal with is getting her to open her mouth. It can take an hour just to feed her a meal and sometimes getting her meds in is a real challenge!
She takes PD meds,sinamet, an antidepressant, Paxil, Zanax for axiety, Seroquel for sleep at night and both Aricept and namenda for memory. I know it sounds crazy to give her memory meds at this stage, and believe me, they are expensive, but when we try to stop them, she is totally lost. With them she is here sometimes and she is in adult daycare 4 days a week from 9 to 3. That's when I get a break, well not really, but Mom free time! It's really hard for me to get her out the door and into the car every morning, but the socialization is good for her too.
As jeanne said, you do need time for yourself whenever and however you can get it. It will take time to get her meds straightened out, but if you keep track of her behaviors with each one they try, that will help speed up the process. If you think something she is taking is affecting her the wrong way, let her doctor know right away so a change can be made. Most of all, keep a good eye on her and get a wheelchair if you don't already have one. It can be a lifesaver for you and your dad. Get her doctor to write a script for one so her insurance can pay for it. A walker was not an option for Mom because of her OCD and penchant for jumping up to do something every other minute. She fell on hers twice and ended up with stitches and a stay in rehab the second time. She never got the hang of pushing the wheelchair with her hands either. We have to park her against a wall or the recliner so she can't keep going backwards.
This is the place to be for comfort, support and information. There are so many of us that have been through what you are going through and we are all here to help. Good luck and keep us posted!
I'd like to echo one thing deefer12 said. For us, a walker was totally useless the first year. He'd fall down and the walker would fall with him. Who could blame him for not wanting to use it? After four months we switched to a wheelchair. That reduced the falling and perked up his spirits, too. Now he could get around without fear of falling. Years later when he was in better shape and stabilized he could use a rollator. The simple walker was never successful for him.
Jeanne, Mom just couldn't remember how to use the walker or that she even had it in front of her. Her mind is always running along at a 100 miles an hour! She never sits still and if she focuses on something, she's like a dog with a bone. She can't communicate much now. The right words never seem to come out of her mouth.
As for the bathroom topic on another thread, Mom gets all riled up and looks like she is having a seizure when she needs to go either way. Because of the PD, she is never relaxed enough to pee etc. normally. So she has a very heavy diaper in the mornings. As for BMs, they usually just fall out when we take off her pull ups or when we are washing her. The size of it makes us realize why she gets so uncomfortable, but she can't make the connection to having to go to the bathroom. She gets glassy eyed and starts to drool and throws her head back and her feet out straight. This is what she does whenever she is stressed about something. When she first started doing this, it was very scary not knowing what was happening to her, now we just toilet her and if that doesn't work, we ride it out. Your advice on the subject was very good and in no way offensive! It's a very hard part of care giving, if dealt with in a positive way, it can be less stressful.
I believe Mom is PD with Lewy Body like dementia as she has not been able to function on her own for a long time now. Her severe OCD behavior has to be the worst aspect to deal with and just wears me out daily! That is the reason I haven't placed her because I know she would most definitely have to be chemically restrained. At home she is tied to her wheelchair, but awake and as with it as she can be. I have also refitted her old wheelchair with a nice padded seat and a high back pad with side stabilizers so she can't throw her head back or hang over the side of the chair. I also got a padded tray for it which helps to keep her from bending forward. She likes to reach for the floor either over the side or over her lap, to pick up whatever imaginary things she sees.
The daycare is excellent with her considering how much work she is, but I'm hoping all the improvements to the chair will make it even easier and more comfortable for her too. As she is 4 inches taller then me, it is very challenging to get her ready for the day and into the car for the short ride. Sometimes she goes rigid and won't bend at the waist or knees to sit in the car.Then I have a problem! I have to say, I'm pretty tired after I drop her off in the morning and later in the day when I get her back home. It's a terrible disease and I constantly wonder if it will happen to me too. I have restless leg syndrome and have been on Requip for years now. I can't sleep without it. Lately I think I need to have the dosage upped again!
If your mother and father are of some faith, perhaps getting in touch with their clergy will help. My father has had much trouble dealing with his loss of memory due to dementia and when he was diagnosed with cancer, our PCM called hospice for us. The clergy has visited twice a week and it makes us eligible for respite as well.
You might want to speak with your mother doctor or call hospice yourself. Hospice is there to assist with the entire family. She doesn't have to be in her last 6 months to qualify, as she does have a disease that will eventually take her life.
My next door neighbors mother has been receiving hospice for just over 2 years now. A doctor just had to see her again to state she was indeed dieing.
Hugs and Prayers,
JeanneGibbs; can you tell me what drugs were/is your husband on that stabilized his LBD. I need help with this. Nothing seems to work.
deefer; picking up imaginary stuff on the rug..oh yes for sure. Peeing on the floor, yes...running away..yes. Talking, talking, talking nonsense. I feel like the people on "Airplane" while the nuns are singing and everyone is trying to kill themselves. I don't know how much longer I can handle this...for sure.
Photoartc, the critical thing is to have your husband treated by a specialist who thoroughly understands Lewy Body Dementia specifically. If there is not such a person in your area, traveling some distance would be worthwhile.

My husband was under the care of a wonderful behavioral neurologist at Mayo Clinic in Minnesota.

I will tell you the drugs he took, but I will also tell you I know they don't all work for everyone. Many members of my caregiver support group used some of them with no success. That is why you need a doctor willing to keep trying until the optimum combination is reached.

My husband took: Aricept, Carbidopa/Levodopa, Provigil, Bupropion, Seroquel, and Klonopin. Again, I am not claiming that this is the ideal combination for Lewy Body ... just that it worked very well for my husband. The drug combination really has to be personalized by a doctor who knows what he or she is doing and is realistically optimistic about the possibilities of improvement.

What kind of a doctor is treating your husband's dementia, Photoartc?

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