Hello

I'm here due to a long and complicated story, let me apologize in advance, I'm not sure I'm in the correct forum for this post but I needed to vent and I had to start somewhere. If I'm in the wrong place please let me know.

This portion of my life started approximately 22 years ago when my father was diagnosed with PDD, Parkinson's Disease Dementia. At that time it was simply described as Lewy Body Dementia. He had coped with Parkinson's Disease for several years prior to that. The course of his disease progressed fairly slowly for a couple of years until he required surgery for a colostomy. He came out of surgery crying, seeing and talking to many of his deceased realatives, and extremely confused. Things only went downhill from there until his merciful death in March 2003.

Although we missed my father terribly, life moved along pretty well until the late 2000's when my mother began to exhibit more and more memory and cognitive issues. We sought treatment from several different providers until finally in 2011 she was diagnosed with DLB, or dementia with Lewy bodies. This diagnosis was devastating for the entire family but we adapted and moved forward. Within a year, she was exhibiting parkinsonian symptoms and was unable to live alone, even with a great deal of assistance. So she sold her house and split her time between my brother's home and mine. She was never happy again because she "didn't have a home". Still things moved along at a somewhat manageable pace until February 2015 when she fell and broke her hip. This required surgery to repair and when she came out of surgery she made my father look like a lamb to her lion. She had to be moved to a SNF because she was well beyond the level of care we were able to provide at home. The hallucinations, paranoia, anorexia, defiance, etc... made her absolutely miserable for the remainder of the following year. Her suffering was finally ended in March 2016.

This brings us current. I had been noticing increasing deficits in my memory and cognition for about 2 years but was laying it at the feet of the tremendous amount of stress I had been under for several years and chronic insomnia RLS and OSA. I expected things to improve after my mother's passing and things got back to somewhat normal. Instead I continued to notice an increase in the deficits so I went to my PCP for reassurance. After going through my history and an exam, he referred me to a neurologist. The neurologist did his exam, administered a mini mental and referred me for neuropsychological testing. I saw the psychologist for the first visit last week. After an hour interview he said he had a strong suspicion that I was in the very early stages of DLB but we couldn't know until we completed the extensive battery of tests and received the results. He also said there was still a high probability that the cause was stress, grief, and some depression. He says to try not to stress to much over it until we can hopefully get some answers. Sure! I'll get right on that!

Well, that's were I'm at. Extremely frustrated, feeling as though this monster is going to chase me the rest of my life. And if I do have it I know only too well how the monster wants to end the game. As bad as I dread this for me, I just can't stand the thoughts of my family going through this again. They just don't deserve that fate! No one does! All I can do now is wait and pray.

Again, sorry for the length and thanks for listening.

5 Replies

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  • Welcome to the community, and thank you for reaching out. There tends to be a lot of overlap between lewy body dementia (aka DLB) and the dementia related symptoms of Parkinson's, so your descriptions above make sense.

    It's also clear that your caregiving role has created chronic stress over the years. My suggestion is to focus on self care, self care, and more self care. A holiday article that applies all year around is a good place to start: mybraintest.org/2016/12/tip...

    Eat healthy: mybraintest.org/healthy-bra...

    Focus on quality sleep: mybraintest.org/2016/05/fiv...

    Also talk to your MD about low dose trazodone as a sleep aid; for some it can be effective.

    Hope this helps. All the best.

  • Christian,

    Thank you so much for replying, steadying words from someone not directly involved really help.

    I read through the articles and found a lot of good information, especially concerning stress relief. I have been dealing with the OSA and insomnia for years and have seen a couple of different sleep specialists and frustrated each. We have tried all that is suggested in the article as well as several sleep aids including trazodone. I have have not had good reactions to any of them, from being unable to sleep to working around the house half the night without any awareness of it. I'm just thankful I didn't leave the house, set something on fire on the stove, or try to drive as I'm legally blind. My wife describes my actions when I am asleep as typical of REM sleep disorder.

    I am coming up on my 4th surgiversery of Roux en Y bypass from which I successfully lost 140 lbs and am still within a healthy weight. As a result I typically walk 3-5 miles 4-6 days/week so most weeks I get adequate exercise. Also, I am still, and hope to for my lifetime, eating a pretty healthy diet. It's almost impossible not to break over occasionally.

    Right now I just feel kinda lost in the high weeds because of all the complicated issues although I know at some point things have to start getting better. Just hearing a reasoned voice such as yours helps.

    Thank you.

  • Poppygail,

    I empathize with your expressions of fear, frustration, anger, and "why me?" My family history isn't as strong as yours appears to be, but I am feeling all the same things after my own recent diagnosis of early onset dementia.

    I am a person that wants to control, as much as I can, what will happen in my future. I am continuing with my attempts to learn Spanish in my 60s, keeping active physically and doing only the things I want to do (and not too many things that I don't). I am still working as a college professor and hope to continue to full retirement age.

    I've examined end of life issues and made specific instructions to my sisters. I am a single, without children, so they are the ones who will have to be my caretakers. I am going to be living in an independent living/assistive living facility and have already toured several to make decisions for myself. My will is specific about end of life questions for them as my medical advocates.

    I will be seeking further evaluations from dementia specialists to develop compensatory strategies or learn how to use assistive technology to keep my independence as long as possible.

    I have tried to educate myself about the disease and its progression from literature and colleagues who work in the field of neurogenic disorders. I am "attacking" this problem assertive about my needs, wants, challenges, etc. I can't beat dementia but I am not going to roll over and let dementia define me or my future life! I am trying to use my anger and frustration for positive things.

    That's my mindset about challenges in life. Maybe this can help you too.

  • Mpeterson53,

    Thank you so much for your reply. Your "the end is inevitable but the way I move toward it it is largely up to me" attitude is just what I needed to hear. I have always lived my life in much that manner. I was always full steam ahead, I was married, had two children and a doctorate in dentistry by the age of 25. And things only seemed to speed up from there.

    Unfortunately, the prolonged care of my mother and father, watching their physical and mental decline, and essentially losing each of them twice has just taken most of that out of me. Now, to look at things that I've done all my life, such as cutting a wooden joint, and seeing nothing but a swirl of thoughts in my mind, having no idea how to do this familiar thing, is to say the least unsettling.

    These things and so many more are why your reply was so welcomed this morning. I feel as though it has given me the kick in the butt to get started moving in a positive direction again. I firmly believe your positive attitude is worth at the very least as much as the medicines we currently have for this disease.

    As to your other point, my wife and I have just recently met with an elder care lawyer/financial planner to shore up our future financial security and take care of our POA's, wills, etc... And, as you have, we are being very specific about our end of life decisions. My mother was not, she left the decisions to my brother and me. He is terminally ill and was in no shape to make those decisions so I basically was put in the position of doing so myself. I will not leave my wife and children in that position. I'm taking care of it while I'm still able.

    Education, as you so aptly state, is key. Although I am already well versed in DLB, I continue to research and seem to learn something new everyday. Often something encouraging. I am now in the process of starting my family deeper into this knowledge as well.

    Again, thank you so much for you response. It has made an otherwise bleak morning much more encouraging.

  • I am happy to be of any help I can. It's good to know there are others dealing with the same issues.

    Best to you and your wife.

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