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 The Need for Social Support 
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 344
Post The Need for Social Support
I am working on a book for Stage One LBD Caregivers that addresses ways to adjust and cope when you first get the diagnosis or while your loved one is still in Stage One. The quest is to find any and every thing that will extend this stage of the disease as long as possible---to "preserve personhood", as my husband's neurologist says is our primary goal. My husband was diagnosed in June 2007, but had been experiencing various issues for some years preceeding that. We saw 12 doctors before finding the help we needed.
This post is addressing the need for social support as you try to find your feet and get a grip on life as it now must be. Please feel free to add any ideas that worked for you in the early stages and now.

The Need for Social Support
Having friends and family members you can talk to, go places with, vent to, cry with, laugh with, and just be yourself with is crucial to staying balanced as a caregiver.
During this period of my life I have come to understand how truly valuable deep relationships in life are. The folks you thought you wanted as friends sometimes just disappear when things get tough. But the ones who are truly there for you stay and dig in with you. You realize what they mean to you and what you mean to them in a whole new way. It is one of the silver linings that come with a bad diagnosis. Your blessings become very real and deeply wonderful in a strange kind of way.
I think this is why so many people who face tragedy end up saying it is a blessing. There are insights and understandings that can come in no other way.
I learned to use the phone and the computer for more extensive networking to connect with others when I needed support. My daughter has called us every day even as she raises two active young sons. My mother has been a sweet daily supporter by phone as well. John’s brother, Robert, and his wife, Julie, have invited him to come for visits at their house near Charleston. Those have been especially sweet times for him, and it has given me a break to have some time when I am not caregiving. Both our children try to be available to go with us to visits with the neurologist, and our son takes notes on his computer while there. All these have meant so very much.
Different friends have provided a variety of helps. One takes me out when I am blue or just to do something different. One brings little goodies by for us. Some make me laugh. Some provide comic relief just by being who they are. Some share biblical insights that help or recommend a good book to read, so I can get lost for a while in another world. Some let me help them with their problems, which helps me to feel useful outside my own home and connected with the rest of the world. One gets several of us together every now and then for a girls’ trip to the beach. All these things bring me support and loving connections that feed the soul.

1. Let people know how you feel and what you need.
2. Stay very connected to others.
3. Welcome new friends into your life when you can.
4. Find people who are wrestling with similar problems who will understand.
5. Find people who are not wrestling with similar problems to help you get your mind off your issues.
6. Do something for someone else if you can.

_________________
Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url]http://www.amazon.com/Treasures-Darkness-Extending-Alzheimers-Parkinsons/dp/1466428228/ref=sr_1_1?ie=UTF8&qid=1334092686&sr=8-1[/url]


Sun Nov 07, 2010 10:17 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: The Need for Social Support
That sounds like very good advice, Pat. The trouble with us was that he was well into stage 2 before we had a diagnosis.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sun Nov 07, 2010 10:55 pm
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Joined: Wed Oct 28, 2009 11:53 am
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Location: Ocala, FL
Post Re: The Need for Social Support
By the time the patient has seen six neurologists - as Dale did, he probably isn't in the beginning stage of Lewy. The disease has become major in some way.

Is there universal understanding of 'Stage One' of Lewy? Dale continues to be rather 'stage-less' because he is still mobile and more or less dresses himself, showers, etc. - but his mind is much more confused. He refuses to use a walker because he has rarely fallen.

'Staying connected' is very well in theory... but the dinner invitations we once received just don't come anymore. Few want a 'couple' to attend some fancy * party when one of the couple says strange things, tends to spill what he eats, or has trouble remaining standing for very long. Thankfully, I have some supportive relatives and the people at church are very understanding. I doubt very much that 'letting people know' will help at all. Believe me, one conversation with Dale AND THEY KNOW.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Sun Nov 07, 2010 11:17 pm
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Location: Ocala, FL
Post Re: The Need for Social Support
Pat....

What symptoms does your husband have that determined the Lewy diagnosis? All Dale had in the beginning before the hallucinations and delusions began was dizziness.

His decision making wasn't great... but that doesn't mean Lewy either. In fact, he had a serious car accident which totaled the car, a Mercedes. it was his fault.


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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Sun Nov 07, 2010 11:31 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: The Need for Social Support
Pat,
Thanks for sharing. Looks great!
Robin


Sun Nov 07, 2010 11:43 pm
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Joined: Sun Jun 24, 2007 5:35 pm
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Post Re: The Need for Social Support
Leone, thanks for your question.
The problem with LBD, as I have come to understand it, is that it presents a variety of symptoms that can vary hugely between different patients. Then on top of that, it fluctuates so that the symptoms come and go for short or long periods of time. It also mimics, in part, several other diseases or conditions.
It was maddening getting our diagnosis as well.
For more than 2 decades, John had sleep apnea. Then he developed other sleep disorders that seemed to include both restless leg syndrome and REM sleep disorder. That went on for about a decade, gradually getting worse over time.
Around 1999-2000, he started to change in terms of energy level, ability to focus and engage socially as he once had. His stride shortened. His eyes even grayed out. We discovered a tumor on his thyroid, which we opted to have surgically removed in 2000. From that point forward, the symptoms escalated, but they fluctuated.
From 2000 to 2007 there was a gradual and frustrating decline in John's ability to initiate activity at work or at home, to process information, to write neatly, to focus his attention. But it fluctuated. At times he was sharp as a tack and very on point. Out of nowhere, he would drop into a "bad day" or a bad afternoon. We added support staff to his law office to make sure he had what he needed and he was prepared for cases. He began to lean more and more on that support over time.
We went after the thyroid supplement first, then decided he had depression, then Attention Deficit Disorder and addressed those over a period of months. All of a sudden he had a crazy season of wildly fluctuating blood pressure. Each issue was addressed separately while I and his doctor tried to put it all together. He visited specialists. When I asked his primary care doctor if John should retire, she said, "No, this could turn on a dime."
I was researching every day online, hunting for answers, and trying to get at the cause of each symptom as it arose and fluctuated in and our of our lives.
One day in 2007, he thought he saw a bear in the woods behind our house that turned out to be a tree stump (and did look like a bear), but he called the police before telling me. (I had a meltdown that day.)
On one of his bad days, he had a minor traffic accident pulling out of a parking space, but almost hit my car at the same time. At that point, he took a month's medical leave as we intensified our medical search for answers. During that month, a neurologist at Duke University Hospital diagnosed LBD, but gave no hope and offered no meds that would alleviate symptoms.
John retired immediately.
I found another neurologist on this website who happened to be at our alma mater, UNC Chapel Hill, and also on the LBDA Board. It took Dr. Daniel Kaufer over 2 hours to confirm John's diagnosis, and he usually could do it in minutes. He has been a real hero in our story ever since.
We have been blessed to get an early diagnosis. But it does not feel early at all to me. It has been going on for years for us.
Three and a half years later, John has a much smaller stride. His arms no longer swing at all when he walks. He leans when he stands and is developing a slumped posture. His memory is often excellent for many things most days, but he can easily forget what was said 10-30 minutes ago on a bad day. His intiative is very poor. He has some trouble getting dressed, but generally handles it. He gets dizzy often. He falls ocassionally. He has trouble with multiple directions for things----likes to be told one thing at a time. He does not handle loud places or lots of people well. His stamina is poor. On a bad day he can be irritable, difficult, and argumentative, maybe even a little paranoid. Visual-spatial issues are a problem. He can say things that make no sense until I dig a little and "connect the dots"---like he is speaking out at the middle of a story going on in his head.

_________________
Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url]http://www.amazon.com/Treasures-Darkness-Extending-Alzheimers-Parkinsons/dp/1466428228/ref=sr_1_1?ie=UTF8&qid=1334092686&sr=8-1[/url]


Mon Nov 08, 2010 2:34 pm
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Joined: Sat Oct 06, 2007 4:28 pm
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Location: LA
Post Re: The Need for Social Support
My goodness, Pat, you have described the pattern of my life with Mr Bobby. And, once again, I notice something that seems to be a theme with so many of our stories which is: "He seemed to be not too bad until surgery". I have read this repeated time and again by many others.

I think your writing will prove to be quite valuable as time goes on. Not only to yourself but to caregivers everywhere.

Dorthea

_________________
"See this lady she's 85 but she's nice" When I joined in 2007 this is the way Mr B. introduced me to the people only he knew,he added "You need to listen to her" he was 89 then, death due to Lewy Body Dementia/pneumonia in 2009.


Mon Nov 08, 2010 3:44 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: The Need for Social Support
Yes, Pat, all that sounds very familiar. I'm amazed that he is still at stage one. Have you already read, Life in the Balance, by Thomas Graboys, MD? His LBD developed in much the same way with a lot more denial on his part than with your husband. It required people on his staff [he was a prominent cardiologist] to convince him that he was unfit to practice. It's well worth reading. I wanted my husband to read it [he was a PhD research scientist but had retired years earlier] but he lost interest. I think he finds it depressing and pessimistic, probably because he recognized his own symptoms and behavior and didn't want to acknowledge the fact.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Mon Nov 08, 2010 4:31 pm
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Joined: Wed Oct 28, 2009 11:53 am
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Location: Ocala, FL
Post Re: The Need for Social Support - to Pat (the writer)
Thank you, Pat, for (at last) telling your story about John. I must admit that I was beginning to think that John might be a fictional character being developed in a writer's mind. Several things you wrote sound genuine and terribly familiar to me - and perhaps others.

1) Dale has a long history of serious sleep walking from his early 20s.
2) A car accident in 2005 - which totaled our Mercedes - was his fault.
3) Dale is a retired attorney and the loss of his mind is devastating.
4) Dale takes a thyroid supplement and blamed his early symptoms on that.
5) We bought every 'restless leg' treatment and nothing worked.
6) He still complains constantly about lack of energy.
7) Visits to neurologists did not provide answers for his dizziness so I researched his symptoms on line.
:oops: Dale called 911 one afternoon. I was surprised to find the Sheriff at our door.
9) He has trouble dressing - especially with sleeves and pant legs.
10) His memory for names and events is better than mine - even now.
11) He has fallen 3 or 4 times. Once he crushed a nest of tables. He has trouble getting up from a chair.
12) Loud noise bothers him. That may be why he speaks so softly. Sounds may be amplified in his brain.
13) Several instructions given at one time mystify him.
14) He is extremely paranoid - especially about locks and bank accounts.
15) Visual-spacial issues have always been a problem.
16) Talking with him is often confusing. He will combine events in his mind and come up with another story line entirely.
17) Surgery for melanoma in 2002 was traumatic for him.

That's quite a list. To it, I will add 18) that Dale has very little sense of taste or smell. He doesn't buy me perfume - though he knows I like roses. He puts hot sauce or mustard on almost everything.

It's interesting that this is being posted under the Need for Social Support. We don't know each other until we are willing to be open with each other. One of the primary reasons we have for sharing is our need for social support. I hope this is the beginning of helpful and supportive dialog and not just research for a book.

_________________
Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Mon Nov 08, 2010 4:37 pm
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Joined: Sun Jun 24, 2007 5:35 pm
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Post Re: The Need for Social Support
Dorthea....
Thank you so much for your gentle and kind words of encouragement! What a difference they make when undertaking such a project in the middle of this journey!
I have also begun to suspect that surgery may be a kind of trigger to this disease or I wonder if at least it may be an accelerator.

Mockturtule....
I bought Life in the Balance when it first came out, but have yet to read it. My daughter read it and told me it would depress me. At that time, every time I would come to this website or read anything about LBD, I would go into a slump that could take days to come out of.
I might be able to handle it now.
Thank you for the reminder and recommendation.

Leone...
Have I done or said something to offend you? There seems to be an edge on your responses to my posts and replies.
I can assure you that my John is the love of my life, that I love him with my whole heart and would give anything to free him from this nightmare. And everything I have written has been genuine and, unfortunately, far too real.
This is not the life I would have chosen.
However, given that it is my life, I choose to try and bring something good and useful from it.
If my posts offend you or strike you as not genuine or not helpful, please feel free to ignore them.
All of us dealing with LBD need to be supportive and helpful of one another.

_________________
Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url]http://www.amazon.com/Treasures-Darkness-Extending-Alzheimers-Parkinsons/dp/1466428228/ref=sr_1_1?ie=UTF8&qid=1334092686&sr=8-1[/url]


Mon Nov 08, 2010 9:09 pm
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Location: Ocala, FL
Post Re: The Need for Social Support - Pat (the writer)
Dear Pat:

No, you have definitely not offended me. However, when someone in a support group brings along a camera and a tape recorder, the participants just might suspect that the person has something other than just being a part of the discussion in mind. It makes everyone just a little bit uncomfortable. You brought along a notepad and have posted samples of your writing. Writing is a commercial venture.

Thank you for your recent sharing. I'm looking forward to getting to know you better. Your recent post about John tells me much more about you.

_________________
Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Mon Nov 08, 2010 11:12 pm
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Post Re: The Need for Social Support
Leone...
I suppose that suspicious minded people might have your point of view, but it puzzles me. Who besides yourself is made uncomfortable? And labeling my post as "Pat (the writer)" just comes off as mean spirited and bitter.
It was not my idea to write a book. It was John's doctor's idea. He also encouraged me to come to this website and do what I am doing.
The reason I have posted some of the tips I might include in it was that it might help some folks. And according to some of the replies I have received, I think a little of that may have happened.
I also need to see if any of the ideas are actually helpful or meaningful to anyone except myself. I am a problem solver by nature. I want to do what works and what helps. And I need other people's ideas to help me with John.
And incidentally, if I were to ever publish anything, profits would go to places like this website and to other people trying to solve LBD and help and treat those who are cursed with it.
I am also doing this for myself. It helps me to write our story (a part of the book) and practical helps that have worked for John and me. It has been very therapeutic.
Why not try extending a little good faith, and make the assumption that I am here because I am hurting like everyone else and trying to make the best of a bad situation?

_________________
Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url]http://www.amazon.com/Treasures-Darkness-Extending-Alzheimers-Parkinsons/dp/1466428228/ref=sr_1_1?ie=UTF8&qid=1334092686&sr=8-1[/url]


Tue Nov 09, 2010 2:06 am
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Location: Ocala, FL
Post Re: The Need for Social Support Pat (who is writing a book)
I admit to being 'suspicious minded.' :lol: The reason I added "the writer" to your name is that my dear friend, 'Mockturtle', is also named Pat. I suppose I could identify her as Pat A. and you as Pat B. Would that be better? (You have not posted a 'signature.' Note at the bottom of this message that I have indicated both my age and my husband's age, and when he was diagnosed.)

As to what others think, they can speak for themselves. Writing 'tips' about LBD from the experience of 'stage one' seems strange. Since my husband is still mobile, I may guess what the future holds but I know nothing about those who are in wheelchairs, those who are totally incontinent, etc. If your doctor encouraged you to come to 'our house' and write a book about us, shame on him.

Being a 'problem solver by nature' sounds like you have expectations of solving problems here. This site has the benefit of many who have traveled this road to the very end. We rely on their advice. Unless you have a medical degree, I doubt that you can top that.

Most of us are here because we are hurting. We are also lonely. Being a care giver is mostly a thankless task. We often share very raw feelings. We also share love. If those needs are also yours, please join in. Leave your notebook at home.


_________________
Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Tue Nov 09, 2010 8:11 am
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Joined: Tue Aug 17, 2010 9:20 am
Posts: 184
Location: So Cal
Post Re: The Need for Social Support
Pat,
Sher here. I'm going to PM you if I can figure out how. I really want to share a thought with you but don't want it to be judged or censored. Thanks, Sher

_________________
Sher (53) married 29 years to Ken (66) who was diagnosed with LBD in 2008, but it most likely began many years before.


Tue Nov 09, 2010 9:27 am
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Joined: Tue Aug 17, 2010 9:20 am
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Location: So Cal
Post Re: The Need for Social Support
Pat,
Please keep sharing your writings, if for nobody else than me. Unfortunately my husband and I are far past those stages (but I could share many incidents if you need some comic relief) yet I am sure there are many who are reading this website for the first time who may very well be able to connect the dots of seemingly random symptoms, and be able to query their doctors regarding the possibility of an LBD diagnosis. As for your doctor suggesting that you write a book: Bully for him/her! What a great catharsis for you. I know many of us have written poems (I think they are under 'proems' if you do a search) for that therapy and you are doing a great job with your writing. I say KEEP IT UP! Hugs to you for your efforts, Sher

_________________
Sher (53) married 29 years to Ken (66) who was diagnosed with LBD in 2008, but it most likely began many years before.


Tue Nov 09, 2010 10:05 am
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