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 How Counseling Can Help 
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 344
Post How Counseling Can Help
John said this morning that our psychologist, Dr. Terry Ledford, has contributed in some ways as much to his feeling of well being as has the neurologist and the medicines he has prescribed. I asked him to elaborate on that. He said that he has a clearer understanding of his feelings and of my feelings and knows better how to cope with things as a result of the counseling. “It has given greater clarity to me.”
Most relationships have some history and some issues that are unresolved. These issues tend to become more exaggerated in the process of struggling with a new diagnosis as well as coping with long term caregiving of a loved one. What the disease brings all by itself in terms of frustrating symptoms and fears is significant.
I found that counseling was tremendously helpful both for me and for John. We both have learned how to communicate better so that each of us is actually hearing and appreciating what is being said by the other. We also now understand much better those things that are most important to the other and those things which trigger stress. This is invaluable in improving the quality of daily life for both of us.
To put it succinctly, there is simply much more peace.

1. Find a good counselor that both of you trust.
2. Be open and honest about all issues.
3. Ask the counselor to keep in mind that controlling your loved one’s stress level is paramount in the process of counseling.
4. Be humble enough to admit when you are the one who needs to change. Without this, no counseling will ever help you.

_________________
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]


Fri Nov 05, 2010 8:41 pm
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Joined: Wed Oct 28, 2009 11:53 am
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Location: Ocala, FL
Post Re: How Counseling Can Help
Pat....

I found this post totally mystifying. Counseling might have helped when Dale's illness was in the very beginning early stages but none of this applies now. Dale tells his doctor things that aren't true and I stand in back of him shaking my head. There is no longer any 'meeting of the minds' in our case. Dale isn't intentionally lying. He just gets VERY confused.

That is not to say that he has no moments of clarity. He still makes some decisions about his care. He can even look at his hallucinations and realize that I don't see them. We can talk about them.

In the early days of our marriage, we went to a weekend 'marriage encounter' which was tremendously helpful for us. However, others said it only led to their eventual divorce. Counseling is only as good as you want it to be.

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


Sat Nov 06, 2010 7:47 am
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Joined: Sun Jun 24, 2007 5:35 pm
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Post Re: How Counseling Can Help
Leone, my husband John is in the first stage of LBD and it has extended more than three and a half years now. So we are enjoying the benefits of that as much as we can and using counseling as a tool to extend this first stage as long as possible.
The improvement of communication and the resulting reduction of stress for both of us has been huge. We have also fallen more deeply in love with each other as our understanding has grown along with our awareness of how short a time we may have to be together.
As I am working on my book and getting feedback on this website from wonderful people like yourself, who give and struggle daily as caregivers, I have come to realize that the focus of my book will be for first stage LBD caregivers. Its purpose will be to present options that may allow for a longer period of Stage One.
John's neurologist encouraged me to write a book because of John's stability and continued clarity in response to all my efforts. I give the neurologist a huge amount of the credit for how he has handled John's care and my role as his caregiver. We could not have a more supportive and helpful medical team working with us---but getting that was a big part of what I had to do first as John's caregiver.
I have experienced a touch of what you describe at times when John's view does not at all match the reality that I see. I also understand that this will increase, but my effort is to work as hard as I can and in every arena to forestall this monster's grasp on our lives. Every day, every moment is so precious to us now.
Thank you for your response to my post. I wish you all the very best, Leone.

_________________
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]


Sat Nov 06, 2010 2:25 pm
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Joined: Wed Oct 28, 2009 11:53 am
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Location: Ocala, FL
Post How Counseling Can Help (or maybe not)
From what I understand, an accurate diagnosis at such an early stage is rare. Dale has been a sleep-walker since his 20s. After severe hallucinations and delusional behavior in Jan-Feb of 09, the diagnosis was made in August of 09. Before that, he had dizziness which was not specific enough. Going to a counselor since the delusions and hallucinations began doesn't make sense though I admit that I often get my sister involved because a third party can be a help in getting Dale to calm down from paranoia.

Dale and I are 27 years into a second marriage. We did have counselling in our early marriage. Now, however, it's my opinion that most who are dealing with LBD are not inclined to go to another type of doctor. We're beyond any 'improved communication.' In fact, we're just trying to keep the lines of communication open! Believe me, a confused mind is a difficult communication tool.

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


Sat Nov 06, 2010 5:17 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: How Counseling Can Help
Quote:
a confused mind is a difficult communication tool

Truer words were never spoken, Leone!

_________________
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.


Sat Nov 06, 2010 5:41 pm
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 344
Post Re: How Counseling Can Help
My point was that there are things in the early stages of LBD that can be done to help.
I fully recognize that a significant number of folks on this discussion forum may be past the stage where counseling would work. But some of us are not there yet, and we need every tool available to help us buy as much good time as we can get.
John and I have been on a medical journey since he had thyroid surgery in 2000, and we knew something just was not right from about a year before that. We searched and went through 12 doctors before getting the accurate diagnosis and treatment John needed. That finally happened in 2007.
We were told by seasoned professionals that counseling could and should actually make a difference even in LBD. I did not believe it at first, either. We are living proof that it has.
Relaxation techniques and reduction of daily stress is huge for both the LBD patient and the caregiver. Improvement of communication and understanding, which is still pertinent for stage one LBD patients, is important.
Being able to more clearly articulate what you need and why is a big deal when you are on an emotional roller coaster and facing such a devasting monster as this disease.
Please do not dismiss this because it may not help where you are at this point. Too many people will have to walk this path, and as understanding of LBD increases, more will get earlier diagnoses. Those folks deserve to know what might make a difference for them, and actually get them many more good days than would have been possible otherwise. Counseling can do this. I know this because it has worked for John and me.

_________________
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 5:16 pm
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Joined: Wed Aug 11, 2010 2:34 am
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Post Re: How Counseling Can Help
I only wish that mum had seeked counseling way back when dad was first diagnosed. Or at least joined a support group. We both visited dad on Saturday ( the first time we have seen him together since he was admitted to the ALF) and sad to say they have nothing to talk about and mum is still so standoffish. When we got there we were told that dad was over at another building as they were having a morning tea and concert so as we were being shown through the gate dad came through the door not far behind us. He was obviously glad to see us but mum had this instant "bothered" look on her face and said in a short tone " We thought you were over there what are you doing here? We were about to go over" . No smile, No hug and how are you? Gee your looking well just a real bothered look. I was so pissed at the reaction and I know the lady who was escorting us saw that look. The visit was more about sorting out his wardrobe and fussing over just unimportant stuff! Mum is such an organiser probably from looking after children for more than 25 years. My stomach was churning the whole visit. Thank goodness my 6yr son took his new lego game to show off or there would have been not much conversation at all. God I hate this. I don't feel I can visit with mum again and am dreading xmas as the ALF are having a Xmas dinner the thought of us all together and my sister as well in the mix maybe I will leave the country!
Counseling is not for everyone I know. You have to be open to it and willing to share a lot of painful stuff. Mum is a counseller to all the parents of all the children she has ever looked after as they ask her for advice about raising children ( she is like the supernanny) she has formed such a close relationship with her mothers. But can't with dad it seems. She has taken on more of a carers role than a wife caring for her husband.
To be truthfully honest and I am going to feel terrible putting this out there. I feel like going up to her shaking her and telling her "I really love her for all the things and support she has given me but Mum for goodness sakes loosen up! Have a laugh at the things dad has to say> HE THINKS SOME OF THE THINGS HE EVEN COMES OUT WITH ARE FUNNY! We can only control so much that is going to happen in the future that we have been dealt. Especially as he is currently in a good place at the moment emotionally.
It is funny but dad has said on a couple of occasions that when he was at home he had suggested to mum that "She should talk to somebody" It may have fell on deaf ears then but think she is paying for it now.


Sun Nov 07, 2010 6:20 pm
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Joined: Wed Oct 28, 2009 11:53 am
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Location: Ocala, FL
Post Re: How Counseling Can Help
Dear Kelli:

It's obvious that you are frustrated. I also believe in the value of counseling. It was essential for my 2nd marriage in the early days (and so was 'marriage encounter' which we also did.) I'm sorry that your parents seem to have lost whatever 'connection' they once had. It takes two to make it happen.

However, I also need to say that when wives become care-givers, there is a strong tendency to treat their spouse as a child rather than as a mate. I must admit that I have to deliberately think about hugging Dale now whereas that came often, naturally, and easily before he was sick. He is no longer the man I married and the relationship has changed so much. He is a little old bent-over man - even though he does continue to exercise regularly.

If I could talk with your mother, I would remind her that your dad was once her prince charming and that he still can respond to her smile. Tell her that her smile is as important to him as his medicine. It will not work to tell her the 'she needs to talk to someone.' That sounds like scolding which I'm sure she does not need right now.

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


Sun Nov 07, 2010 7:27 pm
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Post Re: How Counseling Can Help
Thanks for those words of wisdom Leone. I would more than likely not be able to tell my mother she "needs to talk to someone." for fear of damaging our relationship. I absolutely love your phrase "tell her that her smile is as important to him as his medicine" boy would love to see her reaction to that! But you know what she would say "Oh Kelli, I do smile when I visit him." Anyhow will keep pluggin along and keep dropping subtle little words of encouragement so as not to seem overbearing. And dad and I will continue having this great relationship. See, when I would visit mum and dad when dad was at home there was never a quiet private place to sit and just talk without 7 kids running around or some parent doing a drop off or pick up. Dad hasn't had mum to himself for soooo long. He has shared the home he built with all these people for 20 years and now? Well I just think he has been dealt a double blow in a way and I am glad he is not dwelling on wanting to go home so much, now that he is settled at the ALF it still doesn't make it fair. But what is fair about this disease?


Mon Nov 08, 2010 12:09 am
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Joined: Sun Jun 24, 2007 5:35 pm
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Post Re: How Counseling Can Help
Kelli and Leone, you are both so right. Leone, do I have your permission to add your quote to my book? I will give you credit, of course.

_________________
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 1:20 pm
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Joined: Fri Dec 31, 2010 3:07 pm
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Location: Minnesota
Post Re: How Counseling Can Help
Pat, how interesting. I've never thought about counseling for Coy. I wonder if he would find it useful? I'll talk to him about it tonight.

This is an early stage activity, for sure. But I agree that more and more people will get earlier diagnosis, and for an increasing number of people the early stages will last longer. (Coy is in his eighth year of LBD and is still early stage.) Anything helpful in the early stages should be explored!

I also think that counseling for the caregiver can be valuable at any stage. We go through mourning while our LOs are still alive. We deal with feelings of helplessness and inadequacy. We are angry and know full well that our LOs don't deserve our anger, but this disease is so frustrating! This online support group is a great place to share experiences. An in-person local group is even better. But personal counseling can be another level of support and encouragement.

Coy started out with many later stage behaviors. Counseling would not have made any sense when he was delusional, paranoid, and very confused. And there was a period of denial where I think he would have refused counseling or been resentful of it. But he has settled into acceptance (mostly) and is at early stage cognition and emotional levels. It could work now. I don't know if we'll wind up doing it, but you've given me something to consider. Thank you, Pat.

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Thu Jan 20, 2011 12:34 pm
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Joined: Sun Jun 24, 2007 5:35 pm
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Post Re: How Counseling Can Help
Jeanne, thank you for your encouraging response!
I agree that more and more boomers will come into the diagnosis of LBD at early stage and will want to extend it as long as possible in hopes of a cure as well as wanting to get the most from each day together.
That is why I persist in posting ideas to enrich and enhance early stage issues.
Counseling has given us a whole new level of living and loving each other. It has produced a silver lining for us in this disease.
We were blessed to find the right counselor. We told him at the first session that controlling John's stress level was priority one. But we have navigated some emotional ground together that I believe might never have been done without the intensity of knowing we wanted the very best from the rest of our time together.
It has been like finding a deep and precious treasure in a dark place, and I wonder if we would have found it in any other way.
Our most important lesson has been to focus on the moment and know that we can handle what is there in that moment. But somehow we have also fallen in love again and learned to communicate with each other so very much better.
For these things, I am grateful.
I really want others to use their time together in stage one to grow as people and in their relationship with their LO.
I do not regret a dollar or an minute invested in counseling. The return has been huge for us. I will always be able to look back and feel good about this choice.


One time I went to our counselor alone and he really helped me to refocus at a time when the grieving and frustration part of caregiving was weighing heavily on me. That made a big difference, too. I expect it will much more in the future.

_________________
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]


Fri Jan 21, 2011 12:49 am
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