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 total panic setting in 
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Joined: Tue May 22, 2012 6:09 pm
Posts: 3
Post Re: total panic setting in
Seems as if the only people that can resolve financial issues are the wealthy and the poor. We in the middle are left with the option to "spend down" to the tune of $11,000.00/month until we are stripped of income. I have been trying to head off disaster one step at a time by taking my husband off bank accounts, insurance policies, etc. Been told they go "way back" so it probably won't help the situation.
I will try to keep my husband at home as long as possible as I remember the inadequate and dangerous care my demented mother received at a "good" nursing home. I drove there every day, but since I have very little eyesight left, I no longer own a car.
If not for the wonderful services in South Florida we would be devastated.
I have availed myself of any and all free services and there are many that ask only for monthly income and not for assets.
Our sons live far away but call many times a day. Ours daughters-in-law have extended a welcome to live with them, but it doesn't compute.
Since I am housebound for the most part, I try not to get cabin fever. I am so glad that our HMO nurse directed me to the Lewy forum. I have culled lots and lots of helpful information from all of you.

_________________
Age 78 married 59 years last January to Bernie (age 86).
Family concerned & supportive, but too far away to help.


Last edited by NANAJAYNE on Mon Jun 11, 2012 11:48 am, edited 1 time in total.



Sun Jun 10, 2012 9:35 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3377
Location: Vermont
Post Re: total panic setting in
"What panics me most is what is coming up the road financially for us."

Jeanne - how are you interpretting Beth's statement? Do we know what her CGing duties are right now? I don't know how much care he needs right now, do you? Do you know that she is physically or emotionally unable to go to work? The way YOU would or did deal with money issues was YOUR way. The way I would deal with money issues in such a situation would be MY way. Neither is right, neither is wrong. But to dismiss some helpful suggestions to what Beth says is her primary concern feels downright judgemental and rude. Do I think that a resume writing class is the only answer for her situation? Quite obviously not, and I think you have totally missed the part where I said that I agreed with the helpful advice that others have previously given her. I just don't need to reiterate what was already said, but add what I hoped would be helpful suggestions to her statement about finances, which were meant in a most positive way. BTW, you'd be surprised at how many adults lack skills for getting a job in today's world, which is quite different from a few years ago.

Have a fantastic day, 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 Jun 10, 2012 11:35 am
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: total panic setting in
Jeanne, you are fortunate to have been able to stop working for a year after Coy's diagnosis, but not everyone--in fact many people--could manage that, or even come close. It doesn't have anything to do with the CG's level of devotion to the LO. It has to do with survival, putting bread on the table and so forth. I hope that no one is suggesting that a CG who feels s/he must work is somehow "less than." What a terrible burden of additional guilt to impose on a person who is probably already feeling overwhelmed.

Beth expressed feelings of panic about her financial situation. I think a logical and reasonable response is to find a way to create income. I believe we are all responsible to do what we can for ourselves, including finding a means of self-support if at all possible. Seems to me that any constructive comments in that regard are entirely appropriate.

Julianne


Sun Jun 10, 2012 12:14 pm
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 344
Post Re: total panic setting in
I agree with Jeanne. Too much too soon can throw you deeper into panic.

And, Jan, the expanded channels for Treasures in the Darkness are now open, so your library should be able to order it. If there is a problem, let me know via email.

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 Jun 10, 2012 12:50 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: total panic setting in
Pat, I'm not sure I understand your comment that "too much too soon" could throw someone into a deeper panic. If the panic involves financial survival, it seems logical that addressing that problem, e.g., finding work and income, could be very helpful. Seems to me that most CGs have to learn how to juggle a lot of things, and they find strength they didn't know they had.

Julianne


Sun Jun 10, 2012 1:06 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: total panic setting in
I think what we may be looking at here is the profound difference between caregiving a spouse and caregiving a parent.

I woke up the morning still angry about Lynn's response.

What we know about Beth's situation is that her lifemate has become too much for her to handle on her own. In addition to cognitive fluctuations he needs help with bathing, shaving, brushing his teeth and dressing. He also is increasingly incontinent. He has become overbearing and combative. He spends a lot of time in bed and has severe sleep apnea.

They have recently moved, meaning she now has to find new health care providers. She is having her husband evaluated for nursing home placement. And she is panicked about how to pay for the care her dear husband requires and also support herself.

In my opinion that is enough to handle right now without adding in career counselling and job hunting. Getting a job is most likely part of the future picture. Pat is right, Beth will find her feet again. And that will include adjusting to many lifestyle changes. She'll get there. Telling her to consider any job right now even if it "isn't glamorous" insultingly implies that what is causing the panic is holding out for something worthy of her. Somehow I don't think that is the problem.

I am not Beth, and perhaps I'm taking this too personally. But I did and still do find the "just suck it up and find a job" approach to "helping" a new spousal caregiver to be insulting and insensitive.

_________________
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 1:12 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: total panic setting in
Jeanne, I don't believe anyone is telling Beth just to "suck it up and get a job." No objective reading of any of the posts could possibly be interpreted to mean that. No one is discounting what Beth is experiencing now as she adjusts to her husband's and her situation.

Also, I hope that you do not take comments to Beth as a personal reflection on Coy and you. It is sad that you are still angry. Every situation is different. We all come from different perspectives and we're all just trying to help Beth.

Julianne


Sun Jun 10, 2012 1:43 pm
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 344
Post Re: total panic setting in
I sent a reply to Julianne, but it has disappeared in cyber land. Maybe it will show up soon.
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 Jun 10, 2012 1:55 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: total panic setting in
OK, Julianne, so my interpretation isn't "objective." It is based on my own experiences and also on other posts Lynn has made in the past on this topic that have also sent me into a tailspin. I've managed to exercise restraint in the past. I'm over the edge on this one.

So just dismiss my concerns as not "objective." That ought to make everything all better.

_________________
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 2:06 pm
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 344
Post Re: total panic setting in
Okay, I will try again.

Julianne, what I meant by "too much too soon" is not to rush into any big decisions too soon after diagnosis because you as caregiver are likely too raw, too vulnerable, and not at the most rational state of your life.

I was like this and, as I shared in my book, I rushed into many things. I was trying too many changes in John's meds to "fix him", and I was desperate to get a house near my children, who were 200 miles away from us. My early choices were well intentioned, but not well thought out and not necessarily the best options for John or for me. Some of them created more problems for me to deal with.

I would encourage any early stage caregiver, especially spouses, to give themselves some time to just breathe, to heal and get your bearings, to seek out those who will help you to focus more clearly on the priorities of your "new normal"----because that new normal is likely to be very fuzzy and very scary when your focus is off.

Some of the fear goes away when you are able to look the situation more calmly, to label the issues, and tackle things one at a time as best you can. All the problems cannot and should not be addressed at once. For me, this was learning to take one step, breathe, then another step, breathe, etc. After a few reasonable steps were made, I could glance back and see that actual progress was being made in finding sanity again. That gave me more peace, which generated more energy to take another step. But biting off more than you can chew is likely to just overwhelm you more.

I hope this explains what I meant.

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]


Sun Jun 10, 2012 2:15 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3377
Location: Vermont
Post Re: total panic setting in
Jeanne - you are apparently reading all sorts of things into my post that aren't there, making assumptions about what I mean and making assumptions about my intentions. If you have a personal issue with me, then bring it up in a personal manner. I know what my intentions are and have been on this forum for the several years that I've been part of it. Maybe this is an incorrect assumption on my part, but it sounds like there is some hidden agenda that you have and it's coming out by misinterpretting things I have said and why I have said them.
Like I have said many times before, no one is right, no one is wrong, there are various ways we all deal with our own situations. In a similar situation, I DID make the choice to find a job despite all kinds of other things going on in my life, and it was the best thing I could have done for me and my children. Anything we do is anecdotal, much of our advice to others is based on our own anecdotal experiences, and anything some of us write is meant to be helpful to people, not hurtful. 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 Jun 10, 2012 2:29 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: total panic setting in
Lynn, I have no "personal" problem with you. In fact, I like you, and usually agree with your posts. And I admire that you continue to contribute here long after your own caregiving role has been fulfilled. I don't like this particular answer. You posted it publically and I expressed my views publically. And, yes, you have been posting "several years" and I've only been posting a year and half, if that has anything to do with anything. I will acknowledge your senoirty and your good intentions.

My objection to your answer is sincere and heartfelt and does not, as far as I am aware of such things, stem from any hidden agenda.

We disagree. It happens in the best of families, not to mention discussion boards.

Are my feelings hurt? Yep. Will I get over it? Oh definitely. I know you'll do the same.

_________________
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 3:31 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3377
Location: Vermont
Post Re: total panic setting in
Thank you for acknowledging my intentions. Seniority has no meaning here for me at all, so whether someone's been on here for 1 hour or 10 years, I hope that I have been able to provide some support in the time I have been on here. 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 Jun 10, 2012 5:50 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
Usually if I decide that I can't exercise restraint any longer, I stop reading a thread and also stop reading a particular person's posts forevermore. Works for me...


Sun Jun 10, 2012 8:54 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: total panic setting in
Thanks for your suggestion, Robin. This isn't about not being able to stand a certain person's posts. This is about being really mad about a particular post, and about a similar topic a few other times.

Aside from one individual who dropped in a few times and made every single member outraged and then dropped out (remember him?), I don't think there has been anyone on here I would want to consistently ignore. Everyone has valuable stories and information to share, questions to raise, encouragement to pass on. We're a good bunch.

(And I'm still mad.)

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


Mon Jun 11, 2012 12:33 am
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