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 Working with Doctors 
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 344
Post Working with Doctors
My husband, John, was diagnosed with LBD in 2007. Here are some things that have helped me in the area of working with his doctors.

Do not quit until you find the right neurologist and primary care doctor. Good communication is essential between you, the caregiver, and the physicians who are treating your loved one. If you have not already read it, go back and read the section of this book that describes the two initial encounters with the neurologists who diagnosed John’s disease. If we had stayed with the first one, our story would be so very different and so much sadder.
If you feel that you are in the competent and caring hands of the right physicians, it removes huge stress from you as a caregiver. I have friends who continue to work with doctors who frustrate them, do not listen or respond well to their concerns, and who do not take the time to deal with the human side of this disease. Their level of stress is so much greater than it needs to be, simply because they will not take the step of checking for a second opinion.
One friend would like to move to another doctor, but her husband does not want to do it. I wish she would understand what John’s neurologist says---that the caregiver is as much his patient as the one with the disease.

1. If you have any reservations about diagnosis, treatment philosophy, or about communication with any doctor, always seek a second opinion.
2. Do not stop looking for the right doctor until you find a match for you as well as your loved one.
3. Make sure it is easy to contact and get a response from your doctors in a timely manner. I use email with one and the phone with the other.
4. Choose your battles. Contact the doctor for important issues only. Try to solve the lesser issues yourself until your next appointment.
5. Make a written list of questions or issues you need to discuss for your appointment times.
6. Make a copy of this list for you and for the doctor.
7. Use your copy to take notes as the doctor responds to your questions so you will remember it all later.
8. Date your notes and file them in a folder that you can easily find later.
9. Get a copy of the LBDA wallet card that alerts medical professionals to the diagnosis of LBD and the possible concerns attached to the diagnosis. Keep it with you or on your loved one's person all the time.

_________________
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 Oct 03, 2010 10:45 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Working with Doctors
Good advice, Pat. I fax my husband's [and my] doctors with questions, requests and new information. That way we both have a copy and the doctor will be apprised of any changes prior to the next appointment. Phone calls have become obsolete with us as a method of communicating with doctors.

_________________
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 Oct 03, 2010 11:10 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3331
Location: Vermont
Post Re: Working with Doctors
To both Pats - all great ideas. Before my dad got really sick that's how I worked with his former primary care dr., his dentist, etc. The only downside to these ideas is that if your LO lives in an area where there is no one to whom to go for a second opinion and your LO is not transportable you have to deal the best you can in what may be a pretty tough situation. Been there, still doing that!
What seems to be working best for us right now is to rely on the hospice nurse and the new ALF head nurse to communicate with my dad's primary caregivers, the 2 CNPs who see him rather regularly. The head nurse was going to see if she could get the palliative care dr., who is the head of hospice, to be my dad's primary. She "gets" end of life issues, advanced directives, etc. unlike the CNPs.
Consider yourself very lucky if your LO is in an area with mulitple drs. and specialists, like geriatricians. Had I known how difficult things would have been this year, I'd have brought my dad last year to my town where we have lots of choices in good medical care. Too late to move him now, after a very frustrating and exhausting year.

_________________
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.


Mon Oct 04, 2010 12:33 pm
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 344
Post Re: Working with Doctors
That is good advice to move where access is easier to good medical care if you can, and a heads up for those of us in the earlier stages of LBD care. At some point, John and I will need to move closer to our children in the research triangle area of NC, where his neurologist is located. We already have met with a prospective internist there for that possibility.
One problem I have is that our friends are all here, and we have a state of the art Hospice program in our small rural county. The atmosphere here is very kind and sweet as well. Leaving will be hard in more ways than one.
What were the signals that it was the best time to move that you missed?

_________________
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 Oct 04, 2010 11:23 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Working with Doctors
Pat,
I guess the best signal is that more is needed, For me sadly I waited too long and finally made the move and he died just 4 weeks later and I was saddled with a new home ,new mortgage and no friends, I moved just 60 miles south but it may have been a million at the time. I also think for people caring for a parent like LYnn, none of this really comes into play because no matter what happens to her Dad she will still be on familar ground , where with me it was a spouse so when he was gone so was everything else I knew familiar.

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Irene Selak


Tue Oct 05, 2010 9:25 am
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 344
Post Re: Working with Doctors
Lynn and Irene, that is so sad and had to be so hard for you.
Irene, did you work it out eventually and adjust to the new place or return to the old place?
The dilemna for me is that no matter where I am, my life will be so very different with a much sicker John and then without my John.
I will have to make a decision about which is the place that works better for those situations. Friends nearby? Family nearby? Also my friends and I are also getting older, too, with the accompanying issues there.
There just is no easy fix and it seems to be so very personal for each situation.
I have to return to my "square one" position that God will provide the right answer at the right time that I need it.

_________________
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 Oct 05, 2010 9:54 am
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Working with Doctors
I think I'd be very nervous about moving, Frank doesn't alway recognize that this is his home, I don't know how he'd deal with completely new surroundings. We are lucky, we have lived in this house for 48 years and I have lived on this street for my 66 years. Our children are about 1/2 hr away. This is a small ranch, not wheel chair friendly, but we aren't there yet, so we should be able to live out our lives here. Everything with this disease is a challenge,
Good luck to all.

_________________
Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Tue Oct 05, 2010 11:00 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Working with Doctors
Pat,
No I am not still in that home, I did stay for 2 yrs and my daughter's and families moved out of state, so 2 yrs later I followed, I had a nice smaller new home but 2 yrs later with my son who would soon turn adult and probably move on with his own life my daughter and son in law added a small apartment on their home, it was a good time to do it as the savings was dwindling and the time was right so in 5 yrs I have had 3 moves and this last one seems to be the best because as you say we are not getting any younger and I went through a major surgery 3 months ago and could never have recovered as well without my daughter, sure nurses and PT came in but that was just 3 x's a week ! My son is still home with me but for how long who knows, I am completely seperate from my daughter and family. So it is nice but honestly after caring for a sick husband for 9 yrs and he is gone for 5 yrs I still feel like the rug has been pulled from under me, I am not sure I will ever get that safe pllace back in me and I know it has nothing to do with where I live!
Your right all our situations are different and they all have to be looked at like that, just like the disease no two are alike !
I hope and pray that you find your answers!

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Irene Selak


Tue Oct 05, 2010 12:55 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3331
Location: Vermont
Post Re: Working with Doctors
I think Irene made a really good point, and that is that the relationship we have with our LO is a huge factor in dictating what I do. If this were my 62 year old husband and I lived in a rural area with limited medical services and he was early in the disease, I'd probably stay where I was but take him somewhere for diagnosis and treatment (if there was any).
Because my dad is no longer transportable, he just turned 89 in Sept. and he is extremely ill, it doesn't make sense to try to move him now. Had I moved him a 18 months ago when he was still mobile, could sit in a car, feed himself, etc. the logistics would have worked. BUT, he would not have had his friends around him, and he's lived within 15 mi. of where he was born for almost all of his life except when he was in the Army. His friends were very important to him and I honored that wish for him to stay. We didn't know he'd have the enormous decline last summer that left him immobile and unable to perform most ADLs, literally overnight.
So, my point is that for each person and their family members, there are a number of factors to consider. What I didn't consider before the "big decline" was just how bad off he'd be, how quickly, and what a huge job I was going to have. There was no way of knowing this really until it happened. If I'd known anything about LBD, had access to this site at the time, MAYBE I would have made another choice, but it's so hard to know.
At this point, he is too fragile to move and I've been told he probably wouldn't make the 10 hour trip, plus he'd have to get used to a whole new environment in the last months of his life. That doesn't seem good either! If I'd moved him against his will 18 mo. ago, we MIGHT have a more accurate diagnosis, maybe not, and he would still probably be as incapacitated as he is now. But, I'm pretty confident I'd have doctors that would at least include family members as part of a team. My life would be easier in some ways also, like I wouldn't be commuting about 1,500 mi. per trip to MD.
I think it's great that you're asking questions and I hope others chime in with their experiences. It is not an easy decision to make. All the best, Lynn

_________________
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.


Tue Oct 05, 2010 12:57 pm
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 344
Post Re: Working with Doctors
Gerry, I am so glad that you have the stability and the close proximity to family that you have! You can always redo doorways if you have to later.

Irene, my heart just goes out to you about all the moves and especially your sense of losing that safety that you knew before. I worry about that, too, because John has just been there for 36 years. Sometimes I feel haunted by what it will feel like to not have him in the house. To encourage you, though, I watched my mom cope with losing Daddy, and I thought she would never laugh again. But finally she did. It took her years and years to get "normal" though.

Lynn, it sounds like you made the right decision for your dad, but the price is really high for you with the long commute and not being included as you would like with his doctors (which I would also hate). I am so sorry you have to travel so far. Do you go often?

All of you sound so special and loving for your families! I am so glad I found you.
God bless you!
Pat

_________________
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 Oct 05, 2010 6:25 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Working with Doctors
Pat,
Thanks for the words of encouragement, I basically am a happy person and I too watched with my parents as they passed and trust me it is nothing like losing your spouse, your life partner ! There is just that emptiness, really hard to explain, like your husband mine was just there for 35 yrs and they were good years and I carry thoses memories with me everyday! My thoughts for you is to live in the day and not think so much of the tomorrows, there will be plenty of time for that!

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Irene Selak


Tue Oct 05, 2010 9:08 pm
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 344
Post Re: Working with Doctors
Irene, that really is the secret----being in the moment and truly living it to the fullest and looking for the blessing, the good, and the lessons therein. When I do that I am always in better shape. I try to just give it to God.
Our counselor tells us that almost always we can truly handle what is right in front of us at any given moment. It is the fear of what might be or dwelling in the past that causes a lot of unnecesary pain.
I believe him.
The other night we saw a 2 hour special on Parkinson's with Michael J. Fox being interviewed. He said that when we let ourselves dwell on what might happen and it never does, then we have wasted our time. If we dwell on what may happen and it does happen, we experience the pain of it twice.
I see the wisdom in that.

Take care of yourself and I hope you have healed from your surgery well.
Pat

_________________
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 Oct 05, 2010 9:36 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3331
Location: Vermont
Post Re: Working with Doctors
Thanks for the support and kindness, Pat. I go to my dad's usually every month for a week or more. In Sept. I didn't get there because I was really sick and I also had a trip to Wyoming that had been planned for months to see my oldest son who only gets home once a year. So, my younger son went in my place, and that was a good thing for everyone. My husband will go with me next week, then we will go back there for Thanksgiving. At least my husband will be with me both times so that makes the travel and the emotional stress better. Lynn

_________________
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 06, 2010 1:01 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: Working with Doctors
Irene, et al,

Don't be too sure that things are all that different for a daughter caring for her mother. The home we are in now (my mortgage) was bought 15 years ago specifically for my mother's comfort and needs. She was an amazing gardener and, though we are in a townhouse, I was able, through direct ownership of the land, to build her several gardens which are now falling to me to care for, very poorly. I have the brownest thumb in Minnesota. When she can no longer live here, I will be stuck with a living situation that I do not want. I'm more of the condo in the suburban city kind of gal. I tried to sell the house a year ago. It didn't sell, so I'm probably stuck until the market gets better. I will also have lost the person I have been sharing a home with for almost 20 years, who is also the person that gave me life and taught me to live. For me, it will be very much as described by others - in a home, alone and lonely, with a singular need to change my living situation. Even with county assistance for Mom, I'm going into serious debt trying to keep up with Mom's needs and keep the home she needs. Thank God for Social Security and pension funds (which I will have to rely on for myself), because Mom's illness has taken most of my savings and credit.

Mom and her sister, in the 80's, moved their mother to a nursing home close to both of them and it was the perfect move for them. They could both share responsibility for Grandma, which was overwhelming for both of them anyway. Grandma hated the nursing home, but she loved that she was close enough to take part in our lives. I really endorse keeping your LO close by, even if it means a significant move for him/her.

Just my 2-cents.

Kate

_________________
Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Wed Oct 06, 2010 1:42 pm
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Joined: Sat Jan 03, 2009 2:59 pm
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Post Re: Working with Doctors
Kate,
Of course I realize everyone has a different situation, I had been out of the family home for 35 yrs and living with my husband and children during thoses yrs, yes their loss was great to me but my loss of my husband was really hard and that is what I was explaining to Pat who mentioned she has been with her husband for 36 yrs.
I have a cousin who lived with his Mom for 58 yrs and she died recently and I know it is hard for him but on the other hand he never married and probably doesn't understand the loss of a spouse, He rambles along in the house feeling very lonely.

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Irene Selak


Wed Oct 06, 2010 7:27 pm
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