G'day everyone, My mom was diagnosed by 2 different Drs' at 2 different hospital.Without telling the latter one about it. But the Neuologist who speacializes in Dementia said no.Now the next night he saw mom in ER He started asking poinient questions to my sister and I.Then he snapped his fingers and said"LewyBody Dementia."Mom no longer can stand up let alone walk,that has happened in the last 2-3 days.I feed her.I wash her up, she always looks frieghtened. I don't know where to go.I am chronically ill myself.No Dr will give a definit dx, yet mom is getting worse all the time,and very rapidly.As P.O.A. my sister and I discussed it and will not be taking mom to the Er anymore.All they do is poke at her poor hands,only place they can find veins, and it hurts her badly.She comes home 2 days later and worse.No Dr will write anything for hospice either.This is a nightmare.But I have hospice coming in today for an assessment anyway.And Monday Council On Aging will come in to do an assessment.Badly need help here.Only had 3.5 hrs of sleep as of now.I know I am losing mom.I have accepted that but the fact that no one out of several Drs will state definitly what is wrong with her..hat is just inconceivable to me.I am gathering up all her med records and going through them myself to see if I can put the puzzle together.Has anyone been through this? Det

Skye,,,I'm so very sorry for all that you are going thru. I can only imagine how absolutely frustrated it is with no Dr actually giving a "definate diagnosis" of your poor Mother.

I'm glad that you have alot of the medical records,,,in those you should be able to find some type of documented illness stated even by the emergency room Dr.

I hope that hospice and in home care will help to ease your Mother's discomfort,,and also help you to get rest.

Please come here often to ask any and every question you may have,,there are so many wonderful people here,,what one person can't answer,,another one can. You're in my thoughts and prayers.

If you need a definite diagnosis... which you should do... you need to get a neurologist to order the tests. AD is a process of elimination... and if it's not AD they *usually* find the cause in the process.

Your mom may not be eligible for hospice, but that never means that you don't need help NOW! Council on Aging is a good start. Lots of resources. At least if you can't get end of life care for her, you should be able to get some help... maybe Adult Daycare a few times a week... maybe a caregiver for some hours in the week... and definitely some community resources. If not hospice, can she qualify for Medicaid? Medicaid is based on HER net worth and income... not yours or your sisters.

Another thing you *might* try is to get her in the hospital for three overnights and tell the hospital that you can't take her to your home and that she has no place to go. They would then have to find a place for her to live... a skilled nursing facility unless she is able to live alone. BUT... the SNF may be a LONG way from you. Others here know more about the "ins and outs" of how to do this and maybe one will respond here.

Good luck on Monday. I will say that going through ehr meds to try to sort things out might help... or not. It's amazing how inadequate the medical profession can be when it comes to diagnosing AD and other dementias.

A Neurologist saw your mother in the ER. Ask for a copy of the record in which he wrote his findings. He may well have written, Lewy Body Dementia as his diagnosis. Then, call the Medical Staff Office in the hospital and get this doctor's telephone number and contact him. This will assist in garnering information regarding a diagnosis.

No matter what anyone tells you, it IS important to have a diagnosis. Reason? Treatments are often different. In FTD, Aricept and like drugs are contraindicated; in Lewy Body Dementia, the antipsychotics are contracindicated, they make the symptoms worse.

In many instances, the primary MD's are sometimes not aware of this.

You are VERY wise and proactive. You have already plugged in some excellent services.

Do know, being ill yourself, if mother's disability is profound to the point of needing placement in a Nursing Home, hospice WILL follow her there. It is a blessing to have the extra eyes, ears and hands.

Please let us know how you are doing, we care.

Update on Mom..Mom is now just 3 days later unable to eat or drink.She is slipping fast.I do know she is in pain and nothing I gve her helps.One reason is not being able to get the meds down her throat. Hospice came in Saturday morning and definitly said mom is dying.She desperatly tried to reach moms Dr to no avail.Monday morning early am.I need to talk to her Dr asap.To get hospice the go ahead.They can get mom out of pain the last few days or hours she has left. Thank you all for your considerations, prayers and thoughts.I will keep you posted.
Det

Det,
I'm so sorry about your Mom. I hope you're able to get
ahold of the Dr. Don't take no for an answer here; insist
he/she refer your Mom to hospice immediately!! Hospice
will come in and help your Mom in so many ways, as well
as offer you support. Please do keep us posted.

Dear Skye, I am so very sorry. It is a very good thing that hospice will be there for you.

I wish you small blessings in the face of such adversity and will be thinking of you.

Hugs for you,

I'm so sorry for what is happening now. Prayers for peace and comfort for your Mom and family.

Does not Hospice have their own medical director who can override and order pain med in lieu of your Mom's primary MD?????

Answered Prayers!!!!! Bright and early Monday morning Hospice phoned..Meds were in with in the hour.Nurse came out..Boxes of supplies arrived.Thank God. The Nurse said she will be back today again.Mom has not suffered any pain tonight and has been able to relax alot more.Her spacial thing is off whack and she has stopped talking now.In just a matter of hours ,I am lossing more and more of mom.I pray my brother , in Ohio gets here before it is too late.He would be so unbearably crushed. Mom looks lost..and I know many of you know that look, unfortunetly. The Neurologist called and talked to my sister, he cannot understand what happened since he saw her Tuesday. You tell us..ou are the DR. There are yet so many questions unanswered. We have no idea what exactly is wrong with Mom.She has had several Drs. 2 diff hosp.including The University Hosp.
Every test concievable. 2 Drs said dementia, but this fast? Her will states no autopsie. We may never know.Thank you all for your kindness and support. I will continue to come to visit and talk to you all. God be with all of you..Det

Gosh, I'm so glad for you Skye. You've been on my mind and it is such a good thing that all is getting in line for your mother.

Thinking of you,