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 total panic setting in 
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Joined: Fri Apr 06, 2012 10:23 pm
Posts: 5
Location: Sioux City, Iowa
Post total panic setting in
My husband was diagnosed with LBD this last winter after having memory loss symptoms for three years. He is now on aricept and seems to be doing better. Life has returned to a new normal.

I've had my ups and downs right along with my husband. If he is having a good day, then I'm happy, when the days are bad I'm depressed, panicky you name it. I was talking to a friend yesterday and she mentioned we should maybe see our lawyer to protect ourselves from losing all our assets should long term care become necessary. I hadn't even thought of this issue and I could hardly think of anything today but losing everything we have worked hard for because of some awful disease. I know I'm panicking and not thinking rationally. How do you accept this awful diagnosis and move on to something resembling the life my husband and I used to have together.

Jan


Fri May 04, 2012 12:01 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: total panic setting in
It's certainly good advice to see an elder law attorney and a financial planner who specializes in long-term care planning. Coming up with a plan will take some time.

In the meantime, can you get counseling? Can you take mindfulness-based stress reduction classes?


Fri May 04, 2012 12:40 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: total panic setting in
I'm not quite sure how to answer you. We have lost most of our assets because of Lewy. Had I known ahead of time, I guess we could have taken steps to prevent it but what's done is done. Now that we've spent most of our savings, Medicaid pays for most [not all] of his nursing home and part of his medication bills.

Frankly, the financial side of it, disappointing though it is, after we both worked and saved and stayed out of debt, is the least of my concerns. What I find horrifying is the inexorable decline, the certain progress of the disease and the inability to stop it. I find myself sometimes wishing it would be over at last. There is a gaping hole in my soul where my heart used to be. No, life will never be the same. Not for us. Not ever.

_________________
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.


Fri May 04, 2012 12:43 am
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: total panic setting in
We had a financial planner before we knew about Lewy. After the obvious dx, she started planning for our future in case Frank had to be placed. I was fortunate that I was able to keep Frank home until he passed away. My first thought was for Frank but I also didn't want to have to go back to work to survive.

Robin was right, start checking into what can be done so you aren't left without a source of income. I felt the same as Pat, money worries were on the back burner, I just didn't want Frank to continue to suffer as he had for the last several years. Passing is the only way out for our LO's. It hurts, my days are sad and lonely but my financial survival is not an issue.

Make a financial plan for you and your husband, when that's in place, you've done all you can and then you can put that concern behind you.

Good Luck,
Fondly, Gerry

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


Fri May 04, 2012 7:55 am
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: total panic setting in
Jan, this does not specifically address the financial concerns -- you need a lawyer for that. But I'd like to suggest two books that might be comforting/useful. One is Loving Someone Who Has Dementia by Pauline Boss. I found the insights in this easy-to-read book very helpful, and I wish I'd read it nearer the beginning of the journey. The other is Treasure in the Darkness by Pat Snyder. It is specifically aimed at spouses of persons with LBD in the early stage. Again, there are parts of it I wish I'd read early on.

And, of course, there are several other books about LBD and about caregiving. Perhaps you'll read them all eventually. I think these two are very appropriate from the beginning.

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


Sun May 06, 2012 5:19 pm
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Joined: Fri Apr 06, 2012 10:23 pm
Posts: 5
Location: Sioux City, Iowa
Post Re: total panic setting in
Thank You Jeanne,

I am a circulation clerk at our city library so I am definitely going to see if they can get these books for me.

Jan


Sun May 06, 2012 7:09 pm
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Joined: Sun Oct 17, 2010 2:06 am
Posts: 63
Post Re: total panic setting in
I'd like to encourage you to see an elder law attorney to help you clear the decks in preparation for whatever is to come. It's daunting to contemplate such a huge unknown future, please let experts help you.
Sadly, your new normal is that there is no normal. If you can let go expecting to predict what your husband's day will be like, you can take advantage of whatever Lewy allows you. When we caregivers get good at providing the comfort of routine and structure to our LO's, we have gone far towards helping them make the best of their situation.
Dementia patients pick up on the psychological status of their caregivers. Please talk to your own MD about ways to keep yourself on an even keel. It's important to you and to your husband.


Mon May 07, 2012 5:24 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: total panic setting in
You can find a list of elder law attorneys in your area at naela.org.


Mon May 07, 2012 10:28 pm
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 344
Post Re: total panic setting in
Jan, what Challenged says is very true. You WILL find your feet.
I can remember sending an email to the moderator of this forum months after my husband John's diagnosis in 2007, asking her the same thing about how long would it be before I felt "normal" again. She said, "As long as it takes."

About the elder lawyer, if the price is too high for his services, get a second opinion. A friend of mine was charged too much and did not get advice that really helped her. If your gut says you are not sure, then do not hesitate to talk to someone else. John was an attorney and we could tell you that some are much better than others.

About the book, Treasures in the Darkness: Extending the Early Stage..., I am not sure if the channels are open yet for libraries and independent bookstores to order it, because it was just released April 6, and it takes a few weeks for those to open. You can check it out at the url posted in my signature at the end of this post. If cost is an issue for you, please feel free to private message me, and I will get one to you by mail.

Try as best you can to focus on what is right in front of you---that is usually manageable. It helps me to do that. That is the "mindfulness" that Robin is talking about. It is wise advice.
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]


Mon May 07, 2012 11:58 pm
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Joined: Thu May 31, 2012 6:51 pm
Posts: 60
Post Re: total panic setting in
I, too, feel very panicky about finances. My husband is 73, I am 57, and he was diagnosed with this horrible disease in March 2012. What panics me most is what is coming up the road financially for us. Because he gets a monthly pension (of which his ex-wife gets half), in addition to Social Security, he is not eligible for Medicaid. So I worry about what is going to happen when he gets placed in a nursing home (which I think may happen in the not too distant future). I have heard many people say that the nursing home will accept just his SSI for his care, which doesn't leave much for me to live on. Also, because he chose not to pay survivor benefits out of his pension, when he dies his pension ends , which is also true for his SSI. That will leave me with about $806.00 a month to live on, which I get from the property settlement I get from my ex-husband, most of which is now being used for my car payment. And with the way our economy still is, I have no hopes of getting a job. My son has offered to let me come and live with him when my husband dies, but I don't think he'll put up with me not finding work and a place of my own eventually.

So, even though I try like heck to not panic about what is coming up the road, I can't wipe it completely from my mind.

Oh, and whoever said that we caregivers should try to remain on an even keel in order to take care of our loved ones, makes me wonder if that person thinks we should take antidepressants to zombie our minds in order to accomplish this monumental emotional task.

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Beth


Sat Jun 09, 2012 4:02 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: total panic setting in
Hi Beth,

I'm sorry for your stressful situation. Your son sounds like a caring person, and I hope you can take him up on his offer when the time comes. That'll probably be years away, however.

I wouldn't say that antidepressants "zombie your mind." Antidepressants can be enormously helpful medication. Probably the majority of caregivers in the local caregiver support group are on antidepressants, and they don't seem like "zombies" to me. Those that speak openly about it say that the medication takes the edge off. They are still stressed and grieving, but they aren't crying all the time in sadness. They aren't for everyone but I do see that they help a great many people -- both care giver and care recipient.

Robin


Sat Jun 09, 2012 4:12 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: total panic setting in
Beth, whoever said that we caregivers should try to remain on an even keel in order to take care of our loved ones is right, but doesn't go far enough. We should try to remain on an even keel because we deserve it, because we are every bit as worth of care as our loved ones are, and because continuous panic and stress are not good for us, let alone the people we care for.

How on earth can we accomplish this monumental emotional task? You probably know the list by heart. Eat right. Get enough sleep. Exercise. Insist on getting some me time each day. Get counselling. Join a support group. If appropriate, consider medication. Pretty much easier said than done, I know, but still worth aiming for.

In my observation and experience, antidepressants don't tend to produce zombie reactions. (Some anti-anxiety meds might.) Obviously any drug that turns you into a zombie is either at the wrong dose or is the wrong drug for you.

And Beth, I think any wife in our situation who isn't at least a little panicky about our financial futures must not understand the situation! It is a scary world out there. First, have you talked to a qualified estate planner or an elder law attorney? Don't rely on hearsay or what you've heard or even the experience one of us shares with you. Find out for sure, from an expert who learns your particular situation, what programs your husband may be eligible for, and how he will afford long term care, and what that will leave for you. You may still panic after you hear, but at least it will be over realistic concerns.

Hang in there!

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


Sat Jun 09, 2012 8:17 pm
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 344
Post Re: total panic setting in
Beth, your husband was diagnosed in March. You are 3 months out from that diagnosis. What you are feeling is normal. We spouses have all been there and we understand. But you will find your feet again. It may take some time, but you will find a way to cope better.

Jeanne gave some good advice. You might want to go back and read what she said again.

Try to focus on what is happening right now if you can---today---this moment. It is doable if you focus on what is now. Planning will come. First find your feet and give yourself time to do that. Be easy on yourself by not borrowing trouble from a tomorrow that may never come the way you imagine it.

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 Jun 09, 2012 9:06 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3394
Location: Vermont
Post Re: total panic setting in
Hi Beth - I think others have given you some very sound information and advice. I'd like to add one thing, and that is, if I were panicking about the future and didn't feel like I had the money needed to live on, I'd be doing almost anything to get a job. I don't know where you live, so I don't know the exact situation, but I do know that there are jobs out there. They may not be glamorous, they may not be exactly what you want, they may not pay what you were making, but if I were that concerned about money, I'd take anything I could get until a better job comes along.
Have you gotten assistance with resume writing? Do you need to have someone coach you in interviewing skills? If you've been trying to find employment but not being successful, perhaps a meeting with a job counselor can help. I hope that once you find a job some of your stresses will be lessened. Good luck with everything. Lynn
PS - I was on anti depressants for several years while caregiving for my dad. They helped me NOT be a zombie! I got better sleep, was able to cope better in general, and although I knew his health situation was hopeless, it made me not feel hopeless about everything else in my life. It took a few tries to find the right one but I am very grateful that there were good choices and that I hung in there till my dr. and I found the right med and the right dosage and eventually I was able to cut the dosage down and get off it.

_________________
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.


Sat Jun 09, 2012 10:53 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: total panic setting in
Maybe, Lynn, that is indeed what you would have done if you had ever been in Beth's situation. I don't know. I do know what I did when I was in Beth's situation. I did not work for about a year after the diagnosis. It would be kind of interesting to hear how many spouses were able to work during those first awful months, and among those that did, whether they went out and found a new job or hung on to what they were already doing.

(Having done it several times, I know that job-hunting is a full time job, and a very stressful and demanding one at that. And it can go on and on and on, without any paycheck to show for it.)

How would I have felt if I'd gotten the advice to get a job -- any job, at any wage -- at that point? Well, finding a job for $8.50/hour (back then) and paying out $12 to $18/hour (back then) to have someone stay with Coy for more hours than I worked (to allow for travel time) would simply not have made any sense to me. How would going further into debt help mitigate the panic I was feeling about the future? And those "any jobs" you can always find in a bad economy tend not to pay for sick days, or have a pension, or health insurance. You miss work to take your husband for an appointment, you don't get paid. You miss work too often, you don't have a job.

But that wasn't really my issue. The economy was not that bad back then and I could have had a decent job. I did not have the energy, the stamina, the emotional health to leave the love of my life and go out into the marketplace. I was not ready to give up my focus on Coy's health until 3 things happened. (I remember enumerating them to the many well-wishers who thought I should simply place Coy and get on with my life.) 1) We'd had time to work through the treatment plan from Dr. Boeve at Mayo (Coy's first appointment was in month 4 of his disease.) 2) My own health recovered from a serious problem that was finally diagnosed and was being treated. 3) I worked through the god-awful, time-consuming, crazy-making applications and insurance and legal stuff. (Much of this has to be done during normal business hours, of course.) I think that took 9 to 10 months. It had me in tears many days. I did have an elder law attorney and I was following the plan she laid out for us, in case you think I was stubbornly and inefficiently trying to do it all on my own.

This is hypothetical, but if I had been lucky enough to find this forum three months after Coy's diagnosis, and I was sharing my panic about the financial future, if someone had suggested that what I might really need is to take a resume writing class, I don't know whether I would have cried or been angry. I'm pretty sure that I would never have returned to the forum, though.

And now I work. Full time. In spite of my own health problems. The flexibility of my hours and the fact that I can now work most of them from home means I can almost maintain our standard of living. I also means that I pretty much work 7 days a week, and through holidays, in order to work around the many demands of caregiving. I'm retirement age, but I can't afford to not work. I am not a slacker. I am not afraid or unwilling to carry my own load, and Coy's too.

But those first month's after Coy's meltdown? Go to work? No. No way could I have survived that. And I (immodestly) believe that Coy would not have survived without my persistent focus on getting us started down the best path possible for his treatment and for our stable homelife. He needed me. I was not going to let him down for $8.50, or $25 or $55/hour.

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


Sun Jun 10, 2012 2:47 am
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