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 total panic setting in 
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: total panic setting in
NANAJAYNE, welcome to the forums! We don't usually get so contenuous. Please don't let my little temper tantrum scare you off.

I think that the "look back" period for Medicaid is 5 years. (I'm not sure if that varies by state.) Do you have the guidance of an elder law attorney or an estate planner who understands Medicaid as you make your financial changes? Putting something in your name instead of his might not really help you if assets from both husband and wife are considered in the application. Again, I don't know if that varies by state. I just think it would be a terrible shame for you to go to a lot of trouble to try to protect some assets and then not acheive that goal. Until Lewy moved in with us I had never heard of elder law as a specialty, but it is clearly complicated enough to require some guidance when you have to deal with it! If you already have good professional guidance, good for you! If not, it is one service worth paying for.

I'm glad you are finding so many programs that are helpful to you. By all means, go for every service your husband is entitled to!

I, too, intend to keep my husband at home as long as humanly possible. I know that has been the intention and the practice for many spouses on here. I am encouraged to see that when the time came, the move to a skilled nursing facility was not a disaster for them. It can be a lot of work to advocate for the loved one, but they can get appropriate care and the caregiver can go back to relating to the spouse without all the day-to-day hands-on care. I am not nearly as apprehensive about it as I was before I met the fine wives on this board and in my local support group.

Not all "good" nursing homes are good for dementia patients, that is for sure. But they are not all terrible, either.

Again, welcome to the forums. I hope we'll be seeing more of you.

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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 2:27 am
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Joined: Mon Feb 14, 2011 10:22 pm
Posts: 190
Location: Portland, Or
Post Re: total panic setting in
Wow..............

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Ellen 59, caregiver for mom Marion 81,dx LBD Feb 2011


Mon Jun 11, 2012 4:19 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: total panic setting in
OK as the air seems to be clearing a bit here with this conversation, it looks like one of those times where caregiver spouse V caregiver child disagree, I hate to see when a conversation turns a bit testy as this one seems to have . What solution might work for us may not have worked for everyone, it seems to me what Jeanne was expressing came from a spouse caregiver and what Lynn was expressing came from a child caregiver.

I as a spouse and a 24/7 caregiver could not have went out and found a full time job and left my husband who couldn't do much for himself and fell constantly alone while I worked . So the savings that we did save over the yrs dwindled as time went on, when I tried placement at some point not even knowing how it would be paid for I couldn't even find a place that would take him because of the falls, now that's over 10 yrs ago and I know there are some places that will take them now if you have the means !

So lets all try to remember we all come from different walks of life and very different situations but most of all here on the forums to be kind to one another, we don't always have to agree !

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Irene Selak


Tue Jun 12, 2012 4:01 pm
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Joined: Thu Jun 14, 2012 5:45 pm
Posts: 1
Post Re: total panic setting in
@bethersmi --- Beth, I too am in your EXACT situation. My husband's retirement ends upon his death (his ex currently gets 1/2 AND she pays survivor benefit, so she gets it when he's gone). His other income from VA and SS also end upon his death. I get $200 from a pension (not old enough for SS yet, but it will only be about $200). My husband has a life ins policy that I am named beneficiary on, but it sounds like that will likely be used up on my husband's lewy care. We have no other savings... it's already been used up. Oh, and the health insurance I now enjoy, will also end when he's gone. I've already been out of the workforce for 10 yrs... pretty grim financial outlook. But I take it day by day and when the time comes I will have to come up with solutions. Since we carers have no idea how long our journey will be, it's impossible to plan. Like the ebbs and flows of our loved one's disease, I too ebb and flow with the "total panic setting in" syndrome.

JustHoldOn
Shirley


Wed Jun 27, 2012 6:57 pm
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Joined: Mon Feb 14, 2011 10:22 pm
Posts: 190
Location: Portland, Or
Post Re: total panic setting in
I was unemployed and looking for a job when mymom became ill. Because of my mom's limited resources I was able to become my mom's paid caregiver, at first part time and for the past 1 1/2 years full time. I recently started receiving a pension from a former job (less than $400 a month), and if my mom dies in the next 6 years that is what I'll have to live on, so I totally get the "panic". I don't think that at 58+ years it will be easy to find another job, but I try not to worry about what might happen and just stay in today. I have lots of relatives with couches or spare rooms (now that all of our kids are grown and gone), and I'm sure that somehow I'll muddle through as I always have. :lol:
Ellen

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Ellen 59, caregiver for mom Marion 81,dx LBD Feb 2011


Thu Jun 28, 2012 10:21 am
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: total panic setting in
Shirley,

That life insurance is so important. Unfortunately, most people here are beyond the point at which they would qualify for a policy. But I know, from personal experience, what happens without it. My dad died at 48 and left my 49 year old mother with 4 children (2 in college) an almost paid for house and a part-time job - of the minimum wage "housewife" type of job women got in the 60s. That job, small VA benefits and Dad's SSI were all she had by way of income. But, a real survivor and still young, Mom went to college and got a better job. Not only did it help income (which was still not as much as a man's, of course) but it was a big boost to her self-esteem. I thoroughly annoy my nieces and nephews about getting life insurance now. And I got my policy at 40, which was smart because I developed some things that would have kept me from getting a policy soon after.

Another thing that is not widely recognized is that life insurance is not considered part of one's estate, unless the estate is the beneficiary. So, regardless of the state of a parent's or spouse's estate situation (except if everything is still joint), the beneficiary gets paid free and clear. It doesn't do many of us much good now, but encouraging the young adults to get life and long-term care insurance when they are young and healthy is important and could save their families at some point.

Thanks for mentioning it, Shirley!

Kate

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Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Mon Jul 09, 2012 10:46 am
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: total panic setting in
No matter who you are, caregiving is EXPENSIVE! In the early days, because Mom had some small savings (anything under $50K is small, in my opinion, though social services disagrees) borderline SSI income and because she was very good at hiding symptoms, she barely qualified for any help. It took hospital stays and rehab in a nursing home before anyone really took us seriously. Then, because her savings weren't down to $3000.00 yet, she only qualified for "Alternative Care," which paid for most of the daycare center time. That was full-time 5 days a week because I could not afford to quit work. I was trying to protect Mom's savings because she was still insisting upon knowing she had "enough" in the bank. So I spent MY money. And MY credit. And MY health. We didn't get Medicaid until Mom entered the dementia unit of a SNF. Now, with Mom gone, I am trying to sell (or do a voluntary foreclosure on) my house because I can't cover it's expense and still make my credit payments - despite a decent (but not great) income from a full-time job. My credit rating is so low you can't even see it. Thank God I didn't give up my job! I'm also selling the house because some neurological and orthopedic conditions were made much worse by both the physical strain of caregiving and the stress that is always there. And there is no financial compensation for the damage you do to yourself by caregiving (though I still think Mom was worth it).

My advice to anyone is to legally separate assets as much as is possible as soon as is practical because no one knows the future. And to spend those assets identified as your LO's all the way down before you spend those of your own. And to diary (dare I say videotape) your LO's behaviors and condition so that their "showtime" for the doctor and social worker doesn't define the level of benefits you are entitled to. If I had been smarter, I would have edited my mother's bank statements to give her the impression of adequate savings, while really spending down what she had. I would have taken the social worker's advice to get her remaining funds into a funeral account ASAP (this was too emotional for me so I delayed until there was no choice).

I believe that the spend-down is usually 3 to 5 years. BUT, don't let that stop you from taking steps to protect your future regardless of how late you think you are on this. And, don't let that, or the asset level for Medicaid, keep you from seeking help from social services as soon as you have a chance. There are many levels of assistance and there may be something you qualify for. Even if you don't, getting the SW's advice is going to get you on the right path. If you can't afford an attorney, the SW can help with some advice. So can your banker, who will often help without a fee.

Mom and I shared a home for over 20 years, so though most of my experience was parent caregiving, I expect that I have some small understanding of what a spouse or life-long companion experiences - not much, but some small bit. And I do believe that there is a significant difference. Neither is better or worse, just different. But then, all of our experiences are different because all of our relationships are different. But none of us would be here if our experiences in caregiving weren't traumatic. Sometimes our emotions are raw and we might say or read something in a way that wasn't intended. Most of you know that I've done it, too - often.

When we post, it is because something has touched us or something is bothering us. It is often emotional and we may not say things in a diplomatic way. Often, it is our pain speaking and pain seldom words things well. But our forum wouldn't be what it is if we couldn't do this. It is this very candid and free way we have of letting our feelings out and sharing experiences that helps the writer and sometimes helps some other readers. I hope that everyone takes what I write with a grain of salt and I hope that I do the same. (Sometimes I fail.) In the end, I know that we all care for each other, respect each other and wish each other the best.

Kate

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Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Mon Jul 09, 2012 11:07 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: total panic setting in
Kate,
The one one word that caught my eye in your post was "Tramatic" and you are so right this disease is just that and so many of us has lost so much beyond the illness taking the person. I maade so many terrible mistakes caregivng and spent monies I shouldn't have just because I didn't want to wait until we qualified, then when my husband did die I still had a 13 yr old to finish raising and my Mom died 6 months later with 500.00 worth of Life insurance, what could I do, I had to bury my Mom......Lots of mistakes with homes Just 4 weeks before he died I moved into a home 3x the amount of mortgage just because it was more handicapped friendly, lost my shirt on that one !! On and On............

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Irene Selak


Mon Jul 09, 2012 11:22 am
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: total panic setting in
Oh, Irene, if it is possible to respect you even more, I do now! Raising a child, especially at that age, and caregiving for your husband is a miraculous accomplishment. And a challenge way beyond my experience.

Though I would never wish anyone to be in financial straits, I really appreciate hearing that I am not alone. And, again with your child, I know your expenses were substantial and the stress was probably off the scale. I have a great deal of admiration for moms and especially for moms raising children in difficult situations. And for the children involved.

I have always admired you, Irene. You are an inspiration.

Kate

_________________
Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Mon Jul 09, 2012 11:49 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: total panic setting in
We did the same thing as by spending over $50K in care and medical expenses before his current SNF, where we spent another $105K before qualifying for Medicaid. If we had initiated the process sooner we might have qualified earlier. My biggest mistake was to assume I could always keep him at home and would not need that option.

_________________
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.


Mon Jul 09, 2012 11:59 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: total panic setting in
Kate,
Well you will be happy to know that my son is now an adult going to school and working, he was my rock for so many yrs after his Dad passed and I miss him everyday but I have to let him go to live his own life and we do have a very special bond, I hear from him every day and he always tell ms me he loves me before he hangs up. I did the very best that I could for all except myself but I am very blessed in this life which is different from the life I was used to but still is good.

Pat,
I am sure if Jim had lived longer I would have had to place him too, not sure how that all would have worked but hindsight now I see so many that have found a way I am sure I would have too for me the sad part was that the income Tyler did get from his Dad's death benefits counted as my income, I couldn't even get medicaid for Tyler but I did manage to save a small amount for school for Tyler of course that is all gone now but at least it got him started and now we are so blessed that the county in NC is picking up the tab !

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Irene Selak


Mon Jul 09, 2012 4:43 pm
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 744
Location: LA
Post Re: total panic setting in
No time to plan for the future... the future is now. I read this thread with great interest and thought my experience could [maybe] help one person out there. I will be ninety years old in September. For my birthday I'm planning to ride in the bucket with my son who is a "Sign Man" as he likes to say and he rides high to repair or install new signs. Wish me luck but that is off the subject. I cared for Mr Bobby, my husband, who was blind and a victim of Lewy Body [diagnosed by Mayo Clinic in Florida with brain autopsy] I cared for him for twelve years before his death in 2009. It will be three years in November since his death. His Life insurance paid for his final expenses [burial, our headstones, etc] . I became aware of how our home had been neglected during his illness so I reached into our savings to do the most pressing improvements to make sure everything is functional. My wishes are to live here in our home [alone] and care for myself. Our four children always yield to my wishes and they were standing by to help... in fact they were "killing me with kindness" untill I found myself going from a self sufficient spry older woman to some one falling everytime I left home. I stopped driving because I could no longer walk outside my home without assistance. The grandsons were always letting me take their arm... nice but also dependent. Others had to walk my dog... I was rapidly losing muscle.

The wonderful doctor who had helped me care for Mr Bobby offered me a prescription to our local Physical Therapist Gym.. It is only six blocks from my home and I thought I could drive there by myself, if I would be very careful... I n February I enrolled. Medicare paid for a time while I learned the routines and when my time ran out I did not want to give it up so I continued. The fee is nominal and now the children take up the slack with Mother's Day gifts and such. I work on the machines for the first hour and then use the five lb. bar and different strenghening hand exercisies, etc. for the second hour. I do this three times a week. When I walked in there in Feb., I needed help but now, I drive there. No problem... Oh the freedom! I drive to Church, the drug store, post office, etc. and best of all I have my home. I can remove the "invisible fence" collar from my doggie to take her for a stroll. I can open my dishwasher door without pliars.

The sticky part of this is the thought of final expenses. And the "what ifs" . Insted of putting my money into life insurance, we put away what we thought I would need into a CD. Now I know if I need to go into a home other than here, that will be "spent down" leaving my children with the financial burden, etc. I try to keep myself as strong and as healthy as I can and let the future take care of its self. Too late to do anything different. No one knows what the medical situation will become in the future. I just know I do not have a huge bankroll to shell out...

The children have not met at my house for "The talk", telling me, "Mother, its time" so I'm safe for now.

Dorthea

_________________
"See this lady she's 85 but she's nice" When I joined in 2007 this is the way Mr B. introduced me to the people only he knew,he added "You need to listen to her" he was 89 then, death due to Lewy Body Dementia/pneumonia in 2009.


Mon Jul 09, 2012 5:15 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3396
Location: Vermont
Post Re: total panic setting in
Good for you Dorthea! As my 86 yr. old aunt always tells us "keep moving!!!"
And Kate's advice about financial planning for younger folks - look into LTC insurance and possibly life insurance. Financial planning shouldn't start "when something happens" - it needs to start when you are young and earning a living!

_________________
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.


Mon Jul 09, 2012 5:22 pm
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 344
Post Re: total panic setting in
Dorthea, you are a true inspiration!!! Wow!

I feel like a little wimp after reading your description of your workouts three times a week.

Okay, I need to join the local gym, I guess.

And I just went in and told John about you to inspire him to move more, too.

Thank you for sharing,
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 Jul 09, 2012 5:39 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: total panic setting in
Way to go, Dorthea!! :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.


Mon Jul 09, 2012 6:10 pm
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