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 Finding help 
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 781
Location: LA
Post Finding help
I have not written in a very long while. I thought the need for this had been taken care of and the Medical field was more enlightened so it was not needed anymore however your plea for help shows me that many are still having to fight the same battle that I found myself fighting in the year 2007/09. At that time it was a normal thing for many of us to go into a doctor's office with our loved one who seemed perfectly alright that day and finding the doctor wondering why all the worry, or else we would be told it was a stroke, Alzheimer's, or beginning Parkinson, when we knew it did not fit what was going on at home in the wee hours of the night or times when no one else was around. SO, you will need to become a stronger person and refuse to be brushed off. Arm yourself with all the packets this Association has to offer. Memorize everything pertaining to your mother's condition. Keep a notebook/diary/journal for what happens, what works and the reaction and dates of all. When you become proactive you run the risk of a doctor trying to let you know that you are out of line but there are some out there who will actually be happy to work with you when they find out that you have done your 'homework' and enter the scheduled appointment with answers and good questions. I was left standing in a neurologist's office one day with my husband's medicines scattered on the examining table as he walked out the door saying, "This visit is over, you don't need a doctor, you have the internet!". I did get wonderful help, however, through my primary care physician who sent me to a Geriatric Psychiatrist. I never received a Clinical diagnosis but the Psychiatrist followed the suggestions written in the Dr Boeve Continuum and my loved one lived out his days with the three of us working together. My husband, Mr Bobby, passed away in November of 2009 and we received a Post Mortem diagnosis of Lewy Body among other things. Robin guided me with getting everything tended to and his brain was sent to Mayo Clinic in Jacksonville where I hope it is still helping untangle this mystery of Lewy Body Dementia for others. Your plea for help tells me there is still a long way to go.

"See this lady she's 85 but she's nice", This is the way my husband, Mr B., introduced me in 2006 to the people only he knew. Death due to pneumonia. Lewy Body Dementia diagnosed post mortem at Mayo Clinic in Jacksonville Florida.

Tue Oct 29, 2013 4:22 pm

Joined: Mon Sep 09, 2013 9:16 pm
Posts: 29
Location: Texas, USA
Post Re: Finding help
Hi dorthea,
I'm sorry for the loss of your husband. It is sometimes very difficult to find the help we need during these times when we desperately need it. My Dad was originally diagnosed with Alzheimer's four years ago. Mom and I lived under that assumption for a while, though his symptoms began to vary wildly with what we had always heard about AD. About a year and a half ago we joined an Alzheimer's support group. The moment I described my Dad's symptoms the group moderator said that his ailment sounded more like Lewy Body Dementia. I'd never heard of it at that time, but began reading up on it, studying about it, searching the internet, etc. When we took my Dad to his appointment with the neuro about a month ago I took along a "journal" of all of the really strange and odd stuff Dad has been doing since January of this year -- hallucinations, delusions, confusion, fluctuations in lucidity, etc. I flat-out asked if Dad might have LBD. The doctor said yes, based on his symptoms, its very likely that he does. The doctor, I think, was impressed that I'd taken the time to document Dad's problems and that we were aware of LBD. The information I presented was placed in Dad's record and the doctor read it. Now I think he realizes just how badly Dad has been doing. Many times you DO have to be proactive, because the doctors don't see the patient 24 hours a day 7 days a week. And if you don't write things down, you tend to forget to mention them when a discussion actually takes place.

We actually spoke about care facilities at that same appointment, as it has come to the point where Dad simply cannot be taken care of at home, as terrible as that is to say. Sometimes that breaking point just happens. Mom is 83. There's no way she can continue to care for him as his disease progresses. Due to this discussion I believe my Mom finally came to the conclusion that she can no longer cope. Her health as been impacted also. So within the last week we have actually contacted the nursing home we want him to be moved to, got him "admitted" to hospice "routine care", will have someone from hospice come to the house for the rest of this week, will have Dad admitted to the nursing home on Monday for 5 days of respite care provided through hospice, and after that respite period will begin the private pay process to keep Dad at the nursing home. He will basically be cared for by both the nursing home staff and hospice staff for his first 90 days there, then will be re-evaluated as far as hospice care goes to see whether it will continue. The hospice issue was again a part of being proactive. I never knew the wonderful things that hospice actually does. You don't have to be on your "death bed" with 6 months to live before they will step in and help. And I only found this out because I called the nursing home regarding respite care and the folks there provided the information as part of our discussion.

All of this came about so quickly because we became proactive. It hasn't been easy. My Mom cries continually, feels guilty, says people will think she's terrible for doing this, thinks Daddy will hate her for it. None of that will happen, but its part of what occurs with this disease. Everyone is impacted, and eventually tough decisions need to be made. Mom worries that Dad won't be happy in the NH and will go downhill. Both things might happen but I try to stay positive. I think she'll be surprised with how Dad handles it. He was watching TV with my husband when the hospice nurse went in to do a physical. He didn't blink an eye when she came in and took his blood pressure, checked his pulse and heart, measured his arms, checked his legs, etc. He just sat there, asked a few questions about his vitals and tried to tell us what they were "the last time". I think he'll be okay. I'm just not sure about the rest of us!

Wed Oct 30, 2013 11:35 am

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Post Re: Finding help
You are very lucky that your hospice organization seems to have "looser" restrictions than what many of us have experienced. My dad "failed" hospice twice. He had gone WAY downhill as of the first hospice eval., then continued sliding downhill mentally and physically. He was finally accepted by hospice only about 2 mo. before he died and it was obvious he wasn't going to last much longer at all 3 of his hospice evaluations. He had even lost about 100 lb. by the first evaluation!!! Despite the fact that I was told that all hospice orgs. use the same criteria, they apparently don't, or they don't apply the criteria as strictly in a few places, apparently. We could have used the extra help 6 mo. before he died, but were denied it. On the ES of MD, you do "have to be at death's door" before receiving hospice, which is a shame. Glad your situation was treated differently.

Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.

Wed Oct 30, 2013 2:53 pm
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