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 Early stage ideas for when you feel lonely and sad 
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 343
Post Early stage ideas for when you feel lonely and sad
I am reposting this in a more appropriate spot on the forum. It was originally posted in response to an early stage caregiver who was despondent and sad and wrestling with the grief that comes with LBD diagnosis:

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 2:59 pm
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Joined: Fri Jun 19, 2009 11:23 am
Posts: 200
Post Re: Early stage ideas for when you feel lonely and sad
Pat
Very well written and very good advice. These are exactly the things I have been doing to get through this, however the sad and lonely days still come once in a while. I find myself talking like a magpie when I have visitors. :lol: It's good to have someone to have a conversation with once in a while. That's why this forum is so wonderful. Some days I just need to listen and some days I need someone to talk with.


Mary


Sat May 25, 2013 3:26 pm
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 343
Post Re: Early stage ideas for when you feel lonely and sad
Mary, I agree!

I use the phone for daily conversations with my daughter, my mom, my friends. My son says I really like to talk on the phone, but he just does not understand how important that is to keeping me balanced.

I also go out to lunch with friends every chance I get. I have a good Sunday School class that I love spending time with them on Sundays. Socializing is part of my medicine for caregiving. We are retired so I have to be proactive to stay connected with others.

_________________
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 4:00 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 609
Post Re: Early stage ideas for when you feel lonely and sad
I agree with Pat except for the suggestion of praying to God for help, and the religious insinuation in the statement that we in this for a reason and can handle it. Seems to me that on this forum we ought to be respectful of all beliefs or non-beliefs, including remembering that some people may be atheist or agnostic, rather than making assumptions that everyone believes as we do.

Julianne


Sun May 26, 2013 9:53 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3126
Location: Vermont
Post Re: Early stage ideas for when you feel lonely and sad
I think Pat has some great ideas here, but it makes me a little uncomfortable when people say things like "God doesn't give you more than you can handle" or "pray for help", etc. That may be helpful to some people, but it gets me a bit bristly because it does not reflect my life's philosophy on people getting diseases and people becoming caregivers. For those who relate to that, great, but I believe Julianne has made a good point too. I hope all you CGs and your loved ones have a peaceful day today and that you take care of yourselves as you navigate another day of providing care to your LOs. 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.


Sun May 26, 2013 10:34 am
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: Early stage ideas for when you feel lonely and sad
I don't think anyone needs to take offense at something they do not agree with. I would hope that nonbelievers would show tolerance toward believers, just as believers show tolerance to them. :P

_________________
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 May 26, 2013 12:01 pm
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 343
Post Re: Early stage ideas for when you feel lonely and sad
Thank you, Pat.

Faith is crucial for many caregivers as a source of strength, peace, and acceptance of their new roles in life. To neglect that or to shy away from mentioning it because it may ruffle someone is a disservice to many, in my opinion.

_________________
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 May 26, 2013 12:31 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Early stage ideas for when you feel lonely and sad
It feels like there's a bit of an implication that there's something wrong with people who don't agree with statements like "you aren't given more than you can handle", or "this is an opportunity for you to step up and do....." Caregiving a seriously ill, very impaired person is a tough job. If you feel like you already can't handle it, that just adds to feeling overburdened and inadequate. People get sick. Other people become caregivers. However you can get through it, you get through it. If some people want to pray and that makes them feel better, great. If some want to go and have a primal scream, fantastic. If people get help through venting to each other on the forum or in a support group, that can be helpful too.

_________________
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.


Sun May 26, 2013 2:42 pm
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Joined: Sun Jun 24, 2007 5:35 pm
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Post Re: Early stage ideas for when you feel lonely and sad
Lynn, I have done all three---prayer, primal scream, and venting---along with anything else I can think of to cope with caregiving. They all help (as long as that primal scream is not done in the presence of the LO, of course). :-)

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]


Sun May 26, 2013 3:11 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Early stage ideas for when you feel lonely and sad
Yes, and as long as the neighbors don't hear it and call the cops either, Pat! LOL I used to sit in my car and sob for a while before I could get it back together enough to drive the 40 mi. back to my dad's house. The biggest help was the forum, however. Lots of empathetic ears and kind hearts and helpful tips. Hope you are having a good day, Pat. 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.


Sun May 26, 2013 3:27 pm
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Joined: Sat Jun 08, 2013 1:59 pm
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Post Re: Early stage ideas for when you feel lonely and sad
My husband and I have been married almost 10 years. He is 20 years my senior and is now 65. He was diagnosed with Parkinson's in December 2011 and more recently we saw a new neurologist that says he exhibits Parkinsonisms but thinks its more likely LBD. We are in the process of decreasing his carbidopa-levadopa to see which of his symptoms are medically induced and which ones actually exist. I am more than freaked out! He retired 6 months ago and has been hiding his diagnosis from anyone who asks, which makes it very tough for me, because people see the obvious changes in him. He recently agreed to go to a PD support group meeting that occurs on the 3rd Tuesday of each month. I am very excited that we are going! We love our new doctor and are seeing him again in a few weeks. Every day is an adventure. I'm glad to have found this forum. I really hope to learn much and become a better caregiver/spouse to my husband.


Sat Jun 08, 2013 4:26 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: Early stage ideas for when you feel lonely and sad
I'm glad you found us, too! We're all in this together! :P

_________________
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 Jun 08, 2013 5:01 pm
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Joined: Sat Jun 08, 2013 1:59 pm
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Post Re: Early stage ideas for when you feel lonely and sad
What does late stage and SNF mean, in your signature?


Sun Jun 09, 2013 1:52 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: Early stage ideas for when you feel lonely and sad
SNF is 'skilled nursing facility'. Late stage is kind of a relative term implying that both motor and cognitive decline are severe. There are no clearly-defined stages for LBD.

_________________
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 Jun 09, 2013 2:03 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Early stage ideas for when you feel lonely and sad
Bommersmom,
So glad you found us too, this is a great place to get the everyday non emergency answers that will pop up during your caregiver days. Glad you are happy with your Doctors , that makes a big difference when dealing with a major illness ! I think your husband not wanting people to know is normal. I can remember a time when my husband wouldn't admit to being sick !
I think what they are feeling realy scares them because they too just don't understand it ! Glad your going to a PD meeting, anything to help open the doors for your husband and will help you feel less isolated.

_________________
Irene Selak


Mon Jun 10, 2013 12:44 pm
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