I have started this blog to chronicle my family’s journey dealing with Lewy Body Dementia. In an effort to educate myself about this devastating illness, I found there was a total lack of awareness and a lack of information dedicated specifically to LBD. As a result, I have decided to start this blog as a way to help our family through this journey and hopefully serve as another resource for others living with or caring for someone with Lewy Body. In doing so, maybe it will even raise a little more awareness about LBD. Dealing with this disease is all very new and I’m still learning something new every day so bear with me.
Brief History About Dad’s Diagnosis:
Dad, 74, has LBD. Supporting and caring for him always are his loving wife, 61, two daughters, 30 & 29, and a son-in-law, 29.
Dad’s road to diagnosis has been confusing and difficult to say the least. During the summer of 2007, Dad’s body and behaviors started to change. Husband and I were living in Sydney, Australia and Sister was living in NYC. Mom and Dad were alone and dealing with the changes on their own. Things weren’t going well, mom needed help, and so the kids returned home for a visit. During this time, Dad was taken to the ER in an ambulance and diagnosed with a massive brain tumor that was connected to his carotid artery and optic nerve. In September 2007, Dad underwent brain surgery and his tumor was successfully removed. Despite the removal of the tumor, his body and behaviors seemed to still remain and Dad started to exhibit new alarming behaviors.
Without going in to all of the details, in January 2008, Dad was hospitalized again due to what is now known as LBD symptoms and its terrible effects. It was during this time that his neurologist began to suspect Lewy Body Dementia. Dad was exhibiting signs of Parkinson’s and Alzheimer’s: a shuffling gait, body tremors, muscle rigidity, delirium, hallucinations, paranoia, Parkinson’s face, confusion and forgetfulness. During the hospital stay, Dad’s Neurologist began him on Parkinson’s and Alzheimer’s meds. Getting the exact combination of meds to work has been a difficult balancing act and is a constant work in progress. For now we’re following closely with the Neurologist’s course of treatment but dealing with numerous competing doctors has been stressful and quite a challenge. I have recently joined the LBD Caregivers yahoo group and they have proved to be an invaluable resource. Please think about joining if you have a loved one with LBD.
In April 2008, the Neurologist diagnosed Dad with Lewy Body Dementia. I’ve been doing heaps of research and from everything I’ve read, unfortunately, I do believe his unfortunate diagnosis to be true.
In May 2008, Husband and I permanently moved to the US to help my Mom care for Dad. Sister has summers off and several weeks vacation during the year so every chance she gets, she comes home. Caregiving is emotionally hard and physically demanding. We’ve always been an extremely close family despite distance so in our family’s time of need, we are all coming together to help care for Dad.
Please note: I am not a doctor or an expert. Any information listed in this blog either pertains to my own personal experience and knowledge or is there as a resource for you to research further. What works for one person may not work for another. Always discuss any medical issues with your physician and consult an attorney for legal matters.
Thanks for reading.
Greetings, Holly,
We are Milton and Marjorie Carmen, Co-Trustees of The Carmen Foundation which supports 21 Century Neurological Research. Milton was diagnosed with PD/LBD more than five years ago, and we have been through the maize of misinformation since then. Thank you so much for sharing your experience..so common to all of us as we make our way through Lewyland.
I assume you know of the LBDA and their forums.
We reside in Bend, Oregon at Touchmark, a beautiful condo community with services as needed.
Please stay in touch..and if you want to be on our emailer list, please send your personal email..we do not have a website as yet.
Blessings to you and your family, you are not alone..there are many, too many, of us being challenged by this enigmatic disorder. Love has no boundaries.
Marjorie Carmen
Hi…………..thought you might be interested in this.
I just published a post to join the Dementia Webring so you can share similar interests and concerns with others! A ring will help more visitors find you quickly and easily by using the RingSurf Viewer which lets you navigate easily between sites in your ring
There is also a link on the top left of my blog if you decide to join or browse at a later date.
David Thomas MD
http://knittingdoc.wordpress.com
Hi Holly,
Thank you for linking to the Assisted Living Federation of America from your blog. ALFA launched a new website in May of 2009 and with it many of our URLs changed. I noticed that the ALFA link you have on in the Caregivers sidebar is broken. Please continue to support ALFA by linking to http://www.alfa.org.
I hope this blog helps get the word out about LBD. You are doing a great job!
Jaclyn
Reading your post with interest. My Dad had Lewy Body Dementia. Been gone now 3 years Aug 10th. So much info out there now compared to five years ago. Amazing. Best Wishes.
Sorry about your Dad, Tracy, but you’re right… I’m sure there is a lot more information now compared to five years ago. LBD still has a long way to go in the research and awareness areas but I’m grateful for what there currently is available. All the best to you.
Hi Holly,
I came across your blog, and have been reading for the past hour…there’s that much good information about LBD in it..and so well written.
The only thing missing is a ‘contact’ place to send you a message.
I was just wondering if our caregiving resource might be worthy of including in your Caregiving blogroll? Our site is:
http://www.assisted-living-directory.com
We have spent the past 5 years working on creating a free and useful resource for Assisted Living, Alzheimer’s and other Dementias, and long-term care.
Anyways, thanks so so much – we’d be honored to be included in your blogroll.
Thank you for sharing your experiences and thoughts in such a public forum (blog). I am sure it is helping many people in the same boat.
Take care,
David B.
Thanks, David, for stopping by and taking an interest in my blog. I have added your site under the caregiving section. I’ll also look in to adding a ‘contact me’ me button so that a private message can be sent in the future. Take care and good luck with your site.
-Holly
Hi Holly,
I just wanted to drop you a quick note. I have been reading through your blog today and I appreciate your effort to share your experiences with other people who may be in the same situation.
I had to laugh as I read your last post as I agree with your dad that it is too early for Christmas decorations and music, though I must admit that I did consent finally last night to put up and decorate our tree.
I run two websites helping seniors and their families to research senior housing and care options throughout the United States. I would be honored if you included our sites in your list of caregiving resources!
Thanks and I look forward to reading more from you in the future.
Rachel
Hi,
I need help! My husband is in a care facility, primarily because of mobility problems related to a ruptured disc in his back and excessive amounts of time in bed related to fatigue.
He begs me to bring him home–and asks his care givers to talk me into it. I spent a year with him at home with a caregiver until he began to fall and we couldn’t get him up and had to call paramedics.
I feel awful.
Pi
Hi Pi,
I’m sorry to hear about your husband. This is an awful disease and puts our loved ones and the caregivers through the ringer. It sounds like you’re trying to do what’s best for you and your husband. Unfortunately, we’re forced to make difficult decisions in caring for our loved ones and they often break our hearts. Lewy is such a cruel disease to all.
Is your husband getting any type of OT and does he have a Lewy savvy doctor coordinating his care? Unfortunately, falls are pretty common in LBD patients. Do you have a support network or family, friends, that you can turn to for help or just to talk to? I would also suggest contacting the Lewy Body Dementia Association helpline. Click Here. They may be able to help and give you some ideas on options you could look in to for you and your husband. Also, I would recommend joining the yahoo LBD caregivers online group. They are a wealth of information. Click here.
Please pop back here if you need anything. Take care.
-Holly
I am new at this. ..scared to death. I am 66, my husband 76..He was diagnosed on Friday, with Lewybody, at Duke.
I think he has been exhibiting symptoms of Parkinson’s for 8-9 years, noted by me because of a TV program 12 years ago re: night terrors and the possiblity of them being a precurser to Parkinson’s. We have even seen a neurologist re: this concern. But, tho he showed symptoms, he had not been diagnosed as late as last week.
Two years ago, in March, he was operated on for a benign brain tumor, Hemangioblastoma…It was a 9 hour surgery and his hospitalization took a month. He never fully recovered…seemed to has lost mental capacity….But still active socially.
Oh, I can go on and on about the lead up to the discovery of the tumor…and the aftermath.
I am a retired high school administrator…feel I have the skills to deal with this, but the more I read the more frightened I have become. I am not reading anything good…What helps?…he works out, mildly, three days a week….but hasn’t done much to enchance his cognative skills…I feel I have been nagging too much about this, but the neurologist at Duke strongly emphasized exercise and thinking skills…
I don’t know if this is the onset or if he has had this disease for several years…I am more inclined to believe the latter…just not diagnosed. Thus our trip to Duke.
Now reality has set in…I guess my questions are:
What is the life expectency?
Is the disease fast moving?
I can understand all of this frustration because my mother has just been diagnosed with Lewy Body Dementia, which now explains all of her hallucinations, her seeming inability to coordinate her hands and feets (the Parkinson’s like symptoms), and her bouts of confusion. What is most distressing for me is the hoops to go through and the barriers to get around to get my mother access to long term care. She is 86 and living in an apartment with my father who is 90 nad has another form of Alzheimer’s which primarily affects his memory. But here in Ontario, Canada access to long term care is all controlled by an agency call “Central Community Access to Care” (CCAC). A CCAC case manager has been sent out to assess my parents to see if they are eligible to go into a Long Term Care facility. After asking some questions like: “What’s your name, how old are you, what is your husbanc’s name” they determine because she could answer all these questions, she is competent and capable enough to make her own decisions. So, when asked if she wanted her name put on a waiting list for entry into a Long Term Care facility, and she said no, the CCAC case manager said she can’t force anyone to do this if they don’t want to. The case manager told me there are lots of people roaming the streets with dementia, but the law says if they don’t want help, they can’t be forced to accept it, as long as they’re competent and capable of making decisions (i.e. can answer the questions CCAC asks them). Later at the front door of the apartment building, the CCAC case manager confided in me that she felt the imaginary people my mother sees may actually be real, because they may be dead people trying to communicate with her. The CCAC case manager said that she actually has dead people trying to communicate with her also some times, so this is probably nothing to worry about!!!! The law says someone qualified must find my mother to be not competent or capable before “powers of attorney” can be recognized and decisions made for her. This would involve a doctor appearing in a court of law to state the diagnosis, and declare my mother is not competent. But, because of our socialized health care in Canada, doctors don’t get paid for time in court, and most of the other reports required for this is not eligible for billing to our goveernment health insurance (OHIP in Ontario), doctors don’t want to waste time on activities they don’t get paid for. Me and my siblings work full time, and even though I have spent a lot of time on this off work in the past 6 months, it is not enough to ensure my mother is properly taken care of. This basically leaves my 90 years old father (who is over 90 per cent physically disabled and has Alzheimer’s) to be the primary care giver. Both he and my mother do not want any external caregivers at their apartment to help. Even though Dad thinks all is fine, neither parent has enough mental capability, insight or comprehension to understand how precarious their situation is. At this rate, this will end up being a case of “suicide by mental incapacity” I have had my mother taken to the hospital twice due to bouts of extreme confusion combined with delusion, but after a week or two, the hospital wants the bed empty for the next patient, declares my mother is okay to go home, and CCAC declares my mother can now make her own decisions becuase she can answer their simplified questionnaire to access mental capacity. So, the cycle starts all over again. I am at my wits end with trying to figure out how to manipulate this socialized medical system here to get some help.