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Lewy's is quite unique in presentation. Are doctors now thinking that your husband has several types of dementia, or are they thinking that their first diagnosis is incorrect and that this is presenting more as Lewy's. The progression of Lewy's is often different than other kinds of dementia. Some go down by stairsteps with plateaus at different levels, but always a downward progression. Some go down like a slide, inexorably down such as Alzheimer's. Lewy's can be unique, especially earlier, in its hallucinations, and in the fact that it can be very very affected by anxiety. Can be better some days and worse others. My brother was diagnosed with Lewy's using the words "probably early Lewy's" just by his symptoms. I learned all I learned about it over the several years he had it until his death from another physical cause. The internet is absolutely packed with information on Lewy's so do research. There will be more than you can read in a lifetime. Facebook also has some support pages and as of three years ago one gentleman who ran a page actually had the disease and lectured about it. I have no kept up on any of that since my brother's death. I wish you good luck. There is so much information out there, but an individual's progression is as individual as his or her own fingerprint.
You’re so right AlvaDeer ; my husband had Lewy body .. it’s actually 2 illnesses… dementia and Parkinson’s… much more aggressive and not at all like a gentle Alzheimer’s. A lot harder to manage hallucinations behavioural and anxiety .. need meds to control … at beginning and later Parkinson’s kicks with balance mobility issues … but there’s tons of info on google / utube … it’s usually aggressive but everyone different .. sometimes more cognitively aware than others . Best luck !
My Papa had Lewy Dementia. He heard music 24 hours a day, Christmas carols, religious music mostly - drove him crazy at first, later it comforted him. Also, his anxiety was very high. Would scream about back pain, we’d take him to ER, tests and pain meds later still screaming. I’d suggest anti-anxiety medicine, all quiet, crisis over.
So, it’s a matter of managing symptoms that pop up, as well as the balance issues that come later.
Stay strong, and remember to take care of yourself. You won’t be able to help him if you get run down. The most important thing you can do is to get someone to spell you so you aren’t in the house 24/7. Hugs from me to you.
Great advice Becky! Especially about treating the symptoms when they arise. His behaviors are always changing. Balance is a huge issue and he is a fall risk for sure. Hugs back atcha!
My Dad was diagnosed with Lewy Body a couple of months ago. As a career military man, his hallucinations have been quite violent. It has taken 2-3 months to get things under control where he is able to live contentedly and function again. Medication and social connection seem to have been key in his case. Is have to look up the name of his 2 meds, but your dad's could be totally different anyway. People from Dad's church now visit almost daily, as do family. Those of us at a distance call daily. He has improved greatly. I guess I'm saying keep trying. You will find what helps your dad's symptoms. It's a tough road.
Thanks Buddysgirl1. Especially keeping him social. I believe that is the key! Some meds help. We have a long road ahead. Thankfully, I have a very supportive family.
Hello. My husband is 79 yo. He was first diagnosed two years ago with Fronto Temporal Dementia then seven months ago they diagnosis was changed to Lewey Body Dementia. I'm doing ok. Thanks for asking.
You may get some helpful information by calling a local hospice of your choice; tell the clinical nurse director about your loved one's diagnosis of Lewy Body dementia and his present symptoms, challenges; ask the clinical nurse super to meet with you and review some symptoms and management and, also what symptoms/ decline may make him " hospice appropriate" for hospice care ( in your home if you prefer of course). This will give you some guidance and, knowledge that hospice is about living and quality of life for the pt as well as support for you and the family.
The Lewy Body Dementia Association website is lbda.org
Inform yourself (and be prepared to inform medical professionals) about adverse reactions to common drugs. Drug reactions can be severe and long lasting, including exacerbating the hallucinations.
Thank you for your response. There is a Pharmacist that works with my husband's Neurologist in the same office. He is working with us, as my husband does not want to be on a lot of meds. Right now I feel like he sleeps way too much!
Hi. It's me again.....I just replied suggesting you might get information from hospice. I do want to clarify that your loved one may not be hospice appropriate at all right now. But hospice is very accustomed to caring for all types of dementias and differentiating for lewy body vs others. Please don't be frightened by the suggestion to call hospice of choice for info. It is simply one good resource that may be able to give you and your family a lot of support info. now and down the road.
By proceeding, I agree that I understand the following disclosures:
I. How We Work in Washington.
Based on your preferences, we provide you with information about one or more of our contracted senior living providers ("Participating Communities") and provide your Senior Living Care Information to Participating Communities. The Participating Communities may contact you directly regarding their services.
APFM does not endorse or recommend any provider. It is your sole responsibility to select the appropriate care for yourself or your loved one. We work with both you and the Participating Communities in your search. We do not permit our Advisors to have an ownership interest in Participating Communities.
II. How We Are Paid.
We do not charge you any fee – we are paid by the Participating Communities. Some Participating Communities pay us a percentage of the first month's standard rate for the rent and care services you select. We invoice these fees after the senior moves in.
III. When We Tour.
APFM tours certain Participating Communities in Washington (typically more in metropolitan areas than in rural areas.) During the 12 month period prior to December 31, 2017, we toured 86.2% of Participating Communities with capacity for 20 or more residents.
IV. No Obligation or Commitment.
You have no obligation to use or to continue to use our services. Because you pay no fee to us, you will never need to ask for a refund.
V. Complaints.
Please contact our Family Feedback Line at (866) 584-7340 or ConsumerFeedback@aplaceformom.com to report any complaint. Consumers have many avenues to address a dispute with any referral service company, including the right to file a complaint with the Attorney General's office at: Consumer Protection Division, 800 5th Avenue, Ste. 2000, Seattle, 98104 or 800-551-4636.
VI. No Waiver of Your Rights.
APFM does not (and may not) require or even ask consumers seeking senior housing or care services in Washington State to sign waivers of liability for losses of personal property or injury or to sign waivers of any rights established under law.
I agree that:
A.
I authorize A Place For Mom ("APFM") to collect certain personal and contact detail information, as well as relevant health care information about me or from me about the senior family member or relative I am assisting ("Senior Living Care Information").
B.
APFM may provide information to me electronically. My electronic signature on agreements and documents has the same effect as if I signed them in ink.
C.
APFM may send all communications to me electronically via e-mail or by access to an APFM web site.
D.
If I want a paper copy, I can print a copy of the Disclosures or download the Disclosures for my records.
E.
This E-Sign Acknowledgement and Authorization applies to these Disclosures and all future Disclosures related to APFM's services, unless I revoke my authorization. You may revoke this authorization in writing at any time (except where we have already disclosed information before receiving your revocation.) This authorization will expire after one year.
F.
You consent to APFM's reaching out to you using a phone system than can auto-dial numbers (we miss rotary phones, too!), but this consent is not required to use our service.
I wish you good luck. There is so much information out there, but an individual's progression is as individual as his or her own fingerprint.
my husband had Lewy body .. it’s actually 2 illnesses… dementia and Parkinson’s… much more aggressive
and not at all like a gentle Alzheimer’s. A lot harder to manage hallucinations
behavioural and anxiety .. need meds to control … at beginning and
later Parkinson’s kicks with balance mobility issues … but there’s tons of info on google / utube … it’s usually aggressive but everyone different ..
sometimes more cognitively aware
than others . Best luck !
So, it’s a matter of managing symptoms that pop up, as well as the balance issues that come later.
Stay strong, and remember to take care of yourself. You won’t be able to help him if you get run down. The most important thing you can do is to get someone to spell you so you aren’t in the house 24/7. Hugs from me to you.
Hugs back atcha!
https://www.agingcare.com/topics/12/lewy-body-dementia
I just have not had time to check in as much as I would like.
So many wonderful, caring humans out there!
I'm doing ok. Thanks for asking.
Appreciate you!
Once again thanks for your response!
https://www.smartpatients.com/communities/lewy-body-dementia
There is also a section for info and resources on that site.
Also, there is a website you can sign up for specifically for caregivers to folks suffering from FTD, here:
https://www.theaftd.org/
Best of luck
Inform yourself (and be prepared to inform medical professionals) about adverse reactions to common drugs. Drug reactions can be severe and long lasting, including exacerbating the hallucinations.
Best regards
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