I have been reading the posts in this forum for many months, but haven’t had the energy (perhaps the courage) to create a post before now. Please pardon the long post -- I’ve tried to condense a lot of information into a few paragraphs.

Mom is 68 and has displayed obvious symptoms of LBD since 2009 (actually had the REM sleep disorder for decades before), got a diagnosis of possible LBD in 2010, and then a probable LBD diagnosis in early 2011. In April 2011, we lost my stepfather, who had been taking care of her (and covering for her in the early years of cognitive impairment for who knows how long – he would never say when it really started). His death was extremely hard on her, but she was still relatively functional, so she was able to live in her home with the help of local relatives and friends (my brother and I live out of state) until September 2011, when she had to have major surgery.

We knew that anesthesia could exacerbate the dementia, but we didn’t expect that it would cause such a drastic decline – delirium, dysphagia, almost complete loss of motor skills. After two difficult weeks in the hospital when we weren’t sure what would happen, she stabilized enough to go to a skilled nursing facility. Remarkably, after two months (Oct-Nov 2011) of rehab, she improved enough that she was able to move from the SNF to a personal care/memory care unit, where she thrived for another two months (Dec 2011-Jan 2012) and was able to walk again with a walker, feed/dress/toilet herself with minimal assistance, and engage in meaningful conversation. During this period she was still hallucinating and more confused and delusional than she was prior to surgery, but we were overjoyed with the improvement, and she seemed content.

Then suddenly, on January 29, she became much more confused, started falling frequently, and started have jerking muscle contractions of her arms, legs, etc. On February 3 her mother (my grandmother) died. We debated about telling her but then decided to do so. She cried at the news, remembered it the next day and asked to be taken to the funeral, so we took her. The day after the funeral, she seemed to have forgotten that her mother had died, and continued to decline to the point where she is now confined to a wheelchair, leaning to one side, in diapers, and the dysphagia has returned. She has lost almost 10% of her body weight in three weeks. She has started falling out of the wheelchair. She is constantly delusional and hallucinating, and does not seem to know relatives/friends are there most of the time. Her speech is nearly unintelligible and very quiet. Her neurologists have conducted dozens of tests over the last two weeks and found nothing – no UTI or other infection, no CJD, no abnormal CT or MRI, nothing. They say this appears to be the progression of the LBD, that the possibility for any improvement is virtually nonexistent. I asked if this could be depression related to her mother’s death, and they said that her drastic decline could not be explained by depression alone, especially because she was starting the decline beforehand. They said there is not much more they can do for her, that they will make changes in her medication but are not optimistic that it will have much effect. When I asked how much time she had left, they said it’s hard to say.

I’ve read enough to agree that her symptoms match the very advanced stage of the disease, but I’m stunned that it happened this fast after she was doing relatively well. It doesn’t seem real.

I would be grateful for any suggestions or words of comfort from those who have had similar experience. This is a very difficult time for our family.

Allison

Allison,

Sorry for the recent loss of your grandmother, and the stress you've been going through of late.

It does sound like your mother could be nearing the end though the sudden change since the end of January is confusing. If there have been no medication changes, metabolic imbalances, infections, or facility moves since 1/29, it sounds like your mother may be nearing the end. Perhaps your grandmother's death has exacerbated the decline. (I'm sure you did the right thing by telling her.) Maybe your mother looks at her own situation, and is tired of it and ready to move on. (If you are religious, then perhaps you believe that your grandmother is calling to your mother to come join her.)

I would contact a couple of hospice agencies on Tuesday. With the weight loss alone, your mother should qualify.

Good luck,
Robin

I assume they did a metabolic panel [blood chemistry] as part of their testing. Some of those symptoms can result from imbalances. That said, my husband has been pretty much in that state for over a year now [with normal labs] so it's difficult to know. Lewy is such a roller coaster and is very hard to predict.

Hi Allison - I am so sorry for what your mom and the rest of you are going through. My dad had a huge decline too, literally overnight. He recovered some, but then just kept going downhill at a fairly rapid rate. I would also recommend calling hospice and getting them to evaluate. Even if your mom doesn't meet the criteria at the moment, I think it would be very helpful for you to ask for their pamphlet on final stages. I wish I'd known it existed and wish I'd had a copy the last year or so of my dad's life. It would have answered a lot of questions and would probably have helped me make different decisions than I did, like whether to move him nearer to me. And, if she doesn't "pass" hospice now, they will come again and re-evaluate. I think it took my dad 2 or 3 times before he met their criteria for services, even though he'd had a non-intentional weight loss of about 75 lb. in a year and could perform no ADLs for months prior to the first eval. Don't give up asking for hospice services! Lynn

Thanks to everyone for the responses. I met with social services at the SNF yesterday and decided to have Mom evaluated by the palliative care team. She was evaluated by them yesterday and today, and they agree that she is nearing the end, that it is a matter of months, perhaps weeks. They say she is eligible for hospice now and made the referral for us. Hospice called me today and will be evaluating her this week.

I still can't believe this is happening so fast. Thank you for your support.

Allison

Wow - you really got right on this. I'm sure hospice will be a big help to your mom and family.

thinking of you and your family...i hope that having hospice involved, will free you up a bit and allow you to just spend some special time with your mom...
please take care
cindi

Allison,

Wow! Our stories are very similar. I just posted what's going on with my dad. I wish I could give encouraging words, but I'm in the same boat as you are. Lewy is just devastating and heartbreaking. You and your family will be in my thoughts and prayers. I feel your pain..

Hugs,
Michelle

Allison, my thoughts and prayers are with you,
God bless,
Ger xxx

Hi Allison,
My mom and yours have a lot in common. My mom just turned 68 last week. She had symptoms for awhile, but it wasn't until June 2009 before they were so obvious that we began to aggressively seek a diagnosis (she began to steadily decline after a surgery in summer 2008, but not drastically at first). She was diagnosed with probable LBD in May 2010. In March 2011 she began to decline more quickly to the point that we had to move her to a memory care unit in September. She continued to decline, stabilizing at bit in the fall, but by that point, she couldn't walk without assistance (and even needs someone next to her when she uses a walker). Sometimes her right leg will just quit moving forward, and I have to help lift it. If it gets too bad, she's in her wheelchair. She wears Depends, and although she'll use the toilet if we get her there in time, her Depends are usually already wet or messy. She doesn't talk much at all and certainly can't carry on a two-way conversation (just repeats words or says things that don't make sense). Sometimes she needs to be spoon fed, and sometimes she can manage on her own, but it takes a long time. Some days she hardly eats at all. Her eyesight has been severely affected, so she doesn't even really look at her food while eating. Sometimes I'm not sure if she sees me or knows who I am. She doesn't recognize pictures of my sister or my sister's daughters, but they don't visit very often, so that might be why. She coughs when drinking liquids, and they are probably going to begin thickening them for her. She sleeps a lot, even falling asleep at the table. She often sleeps with her eyes open.

Unlike your mother, her hallucinations are mild to nonexistent. We can't really tell if she's having a hallucination or if she just can't express what she sees with the right words. She'll stare and point at nothing or at something across the room, but when we ask her what she's pointing at, the words she says don't fit the scene. At least she doesn't seem afraid or upset. The nurse doesn't think she is close to death yet because there hasn't been any weight loss.

I'd be interested in comparing notes as time goes on since our mothers are the same age and were diagnosed about the same time.

Allison and Sandwich mom -

I also have a mother who sounds similar to the two of you (she is 72 - my mother's mother, my grandmother, also just died three or four weeks ago). I am interested in reading your posts because I am learning a lot by doing so. My mother is in assisted living. She has called me twice this morning because her hallucinations were so bad last night that she "re-decorated" her room by ripping up pictures and taking things down from the walls. Sometimes she puts the furniture in front of her door at night. I have no idea where we are in the progression of the disease. Sometimes I think we are very far into it and at other times it seems like she is just "dipping into" the problems of the disease. Given that my mother also is bi-polar and has some borderline personality issues, it is hard to tell. My concern right now is with how to help her. We just saw the neurologist last week (big production - I have to bring her to Indiana from Michigan and spend a night in the hotel with her - in which I don't get any sleep because she is crying and demanding assistance all night - she is scared to sleep and cannot get her self to sleep - she does sleep a lot during the day - Is it disease? or is it lack of sleep? - probably both). She was telling me today that she isn't going to live long (she has been saying that since she first got Parkinsons' around 14 years ago). I don't know what to do for her - she has a tendency to get drug addicted (problem with both morphine after a car accident when she was younger and lately with benzos given to her by lots of doctors for anxiety). Now that she is in Assisted Living I keep wondering if we could re-introduce the benzos if they help with things (nurses give her her meds) or if we could do something - Neurologist, despite telling him about the increased hallucinations and lucid dreams and the fact that she refuses to sleep at night did not change things much. I just don't know what to do for her.

Anyway - really wanted to just thank all of you who share on this list for sharing. I am learning a lot - I just wish there were better solutions for the problems that we all share.

Liz

Hello, Liz,

That sounds very stressful. I'm so sorry. Our doctor visits seem like ordeals, too, but nothing like what you have to deal with. When I read stories like what you shared about the hallucinations, I think my mom's inability to talk much or walk on her own is a blessing because if she is having hallucinations, we aren't really aware of it. She does try to destroy things sometimes if in reach, but she isn't able to use a telephone or move furniture. On the other hand, it's really hard to take her anywhere, and I miss hearing her voice. I had dreams of keeping her active--taking her to teas, movies, concerts, etc. up to the end, but I physically can't manage it without help. Stairs are out of the question, so she can't come to my house anymore, and I dread bathroom visits with her in a public place. Instead, I bring tea and ice cream to enjoy with her at the facility and play CD's for her. She doesn't enjoy movies or TV anymore because she can't follow the story.

I know some medications can actually make patients with LBD worse, so I'd do a search on this site to find that list. Maybe someone knows where it is exactly and can direct you to it. I know my mom isn't on any of the harmful meds because I checked earlier, but I don't remember where the list is. It might even have been on another site.

SandwichMom,
Does your mom have hallucinations that have not been caused by medication, infection, or delirium?
Robin

We don't know if she's having any hallucinations because she doesn't really talk. She'll point at things, but we don't know what she's pointing at because she can't tell us. Maybe it's a rainbow-colored unicorn galloping across the wall, or maybe it's just an ant that we haven't spotted. When she was still able to talk and make sense, she said she didn't have hallucinations. As the disease progressed and she mostly stopped talking, sometimes she'd say strange things (and still does on the rare, surprising occasions when we hear her say words), but we think it is the aphasia, not hallucinations. For example, one morning about 1:00 a.m. last summer before moving into a facility, she tried to get out the front door to "check on the midgets." Was she hallucinating about midgets, or was she trying to check on the real-live neighborhood children who'd been playing in the street in front of her house before she went to bed but couldn't find the word "children"? At the doctor's office, she seemed concerned about some of the medical equipment and kept trying to get up to go to it. She used to be a nurse, so maybe she thought something wasn't right. But when we asked her about it, she said, "I can see that the broccoli is pointed at the delivery truck." Is she actually seeing that, or did she get the wrong words?

My father is now in the exact same state as Alison's and SandwichMom's mothers. What a horrible illness! Blessings to all who suffer from it and all who love someone who suffers from it.

Emanuel