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 First time posting on the forum. 
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Joined: Fri Jun 19, 2009 11:23 am
Posts: 201
Post Re: First time posting on the forum.
Yes, I am sure others feel lonely. I sure did. Especially early on in the disease. It was a very lonely life. No one to listen and respond, no one to give me a hug, no one to laugh with. I too believe early treatment is so important. Now four years into this disease, my sweet man can now carry on short conversations, nothing meaningful but just the same, much better than when first diagnosed. I still have lonely days. When I am feeling sorry for myself, I go back and read my journal and I know he has improved. Yes, we feel lonely. I am also an RN and I made it my mission to learn as much about LBD as I possibly can. I have sad days also because I feel like my husband is now my child. A very sweet child.
Mary


Sat May 25, 2013 9:07 am
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 344
Post Re: First time posting on the forum.
I would suggest that you figure out some things you can do that will just feed your own soul. This is a long haul, and your attitude is HUGE in how this plays out for you and your spouse.

If you keep fighting the battle of how awful it is to have this disease invade your life, you will never get past that point. It will eat you alive while it progresses through your spouse. You must determine that LBD is going to have ONLY ONE VICTIM. Otherwise, it will take down everyone it can in its wake.

The good part of this is that you CAN make that decision and you CAN do it---step by step, day by day. Pray and ask God to make you strong inside for this battle. Then look around you and pick something specific that you can accomplish that will help both of you in this journey. For me, it was designing and building a cement ramp to replace steps into our house, then designing a bathroom that would be user friendly. I tell about this in detail in my book. But these things that seem a bit off topic, really did give us both a sense of control again. And every time we walked on the ramp or stepped in the new bathroom, we felt pleasure instead of pain. It was like taking a super vitamin. That may sound silly, but it really did work to help me get my feet back on the ground.

I would also advise you both to get into counseling if he is still early stage. Choose a counselor who understands the concept of being in the moment, so he or she can help you stay in the moment and not dwell on what you have lost and what may happen in the future.

For you, it may be a very different choice of what to do. But do something specific that empowers you again and gets your mind into a problem solving mode instead of a grieving one. You will grieve throughout this journey, but when you make yourself shift out of that mode on purpose to something very practical and helpful, the intensity of the grief is dissipated.

This is a long emotional and psychological battle for a spouse. Take one step at a time. Be determined to survive and even thrive. Look for something to enjoy in each day if you can. Look intensively for it. It is part of a strategy that will force you to see your blessings in the midst of a dark journey.

You CAN do this. It has come to you for a reason and you have what you need inside to make it through. Also, it takes time to find your feet again. You are just months from his diagnosis. Give yourself time to adjust. You will.

Seek out what you need to refill your tank. Do it often. Do not feel guilty about doing it. It is the right thing to do to help you both.

_________________
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 May 25, 2013 11:36 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: First time posting on the forum.
Please post all the posts about being lonely to the areas that best fit it as I am sure others perhaps newer people would be interested in reading it and perhaps commenting on on it to, as the starting post says (First time Posting)

Thanks !

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Irene Selak


Sat May 25, 2013 12:33 pm
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 344
Post Re: First time posting on the forum.
OK, Irene. I will post it in practical caregiving tips with a new intro paragraph.

I get caught up in responding to the person in the moment of apparent need, I guess.

Hope you are well. Take care.

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]


Sat May 25, 2013 2:49 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: First time posting on the forum.
No Problem Pat, I knmow we get caught up , I often do but I just think if we stay more in the area of topic more people see it and that to me means helping more !

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Irene Selak


Sat May 25, 2013 6:06 pm
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 344
Post Re: First time posting on the forum.
I agree. And I have already posted it in the practical caregiving tips section.

_________________
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 May 25, 2013 6:36 pm
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