Guest guest Posted April 15, 2012 Report Share Posted April 15, 2012 Hi and group - My mother has been declining rapidly since 2008. In my experience,research, talking to docs and mostly with the help of the group it clearly is a crap shoot to predict when the end will come. Since the disease vacillates so much I have learned to buckle up and let god and the universe speak. The saddest thing is to see my Mother so sick and When I don't think LBD can get worse it does. Generally, unless there are other conditions such as heart disease, cancer etc patients can languish for years especially with good care! Most LBD patients pass from infection, phnemonia or other extenuating circumstance that takes them. I hate to be a downer but the reality is what it is. We all go through these questions with LBD -i've observed that anyone who tells you they don't womder about " how long " especially in later stages of LBD is not on touch with their inner feelings. Thankfully we have each other here. So many others have been kind enough to see me through these questions, so I am glad to share my thoughts and offer whatever I have learned. Hope this helps you in some way you and others struggling with similar questions. Best, Judy ** I am new to the journey and I think everyone who comes to this list has the same question " how long? " I did. I was told 5 years to 20 years. There are those on this list who are going strong after 10 and others who died after and yet another who told me she lost her husband after 15. I don't think there is a set answer. We all wish there was. It sounds like the disease is progressing rapidly with your wife, going from functioning 5 years ago to nearly full assistance with ADL in such a short time. Good luck. (57) Monroe WA Husband Len (63) dx Parkinson's 2011, dx LBD January 2012 From: LBDcaregivers [mailto:LBDcaregivers ] On Behalf Of gary.s.dale@... Sent: Sunday, April 15, 2012 11:49 AM To: LBDcaregivers Subject: What Stage/ How Long ? anyone want to venture a guess as to how much longer, or what's next with my wife (Kay, age 60 in june) ? perhaps you more experienced caregivers or those that have already lost your loved ones? here is the history. from 2008-2010 kay seemed fine with II diabetes and FMS. was walking , driving, working, etc. at work (teacher assist) she started having memory problems, couldn't find materials, talked to herself. she quit her job in 2008 when summer came. also she came to pick me up at a golf course and ended up driving our very small car onto the golf cart road where they escorted her w/ car to clubhouse. still seemed like something that was just an accident and funny, at the time. 2010. 1) exhibited delusion and major depression- in 4 hospitals till they convinced me ECT was harmless and was only thing now to stop depression and delusion- she wasn't the same since.2.) now in wheelchair 3.)wears diapers but i set timer to avoid more work 4.)watches tv most the day- i take her outside to sit in sun or go to drs. and lab 5.) delusions/ depression/ and sleep are under control with meds 6.)legs getting weaker, can't walk but i can stand her up on legs for transfers to potty, wheelchair, etc. 7.)losing ability to use fork and spoon, forget a knife- i'm having to feed her myself more now 8.) starting to wave at herself in mirror every now and then. says she knows it's her but i don't think so.9.) i ask her name and she will say " what's your name? " hard to get her to say her own name. 10.) looked at a picture of our family and only could name me, not herself or two daughters. 11.) she called me Peanut once, that is our dog. 12.)she does smile and laugh a lot and likes music, cards, and pictures and sleeps well, and enjoys the sun outside. she even said hello once to people walking by. 13.) gaining weight from 160-170 to 190 lbs ,5' 9 " - appetite fine 14.) FMS symptoms have seemed to disappear. i have asked the various doctors: primary, neurologist, psychiatrist- but they don't like to set dates. i finally got her treating doctor to tell me he thinks Kay's case may run 8 years from start to finish. you new people can use my info. as a guideline to how things have gone downhill for us in 4 years. every case is different. God Bless You All..... (husband, 60 ) Quote Link to comment Share on other sites More sharing options...
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