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 total panic setting in 
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: total panic setting in
Dortea,
What an inspiration you are to the rest of us, God Bless !

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Irene Selak


Mon Jul 09, 2012 8:27 pm
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Joined: Thu May 31, 2012 6:51 pm
Posts: 60
Post Re: total panic setting in
Hi Everyone:

I haven't posted in a while, but feel I need to now, in an effort to clear up some questions that some people posed about the possibility of me getting a job. For the record, I have a Bachelors Degree in English, with minors in History and Teacher Education (and no, I'm not interested in becoming a teacher anymore...been there, done that, not interested in walking down that very time consuming path again). I also know how to write a very effective resume, so no need for a resume class. That said, I am not interested in getting a job right now, because I am the only person my husband wants to take care of him.

As for our financial resources, here's what they boil down to: (1) We don't own a home, we rent an apartment. (2) We have no savings - we used our savings to pay for our move from Florida to Michigan in April 2012. And, (3) Both of us have extensive debt.

So where does this leave us at this point? Because of our money issues, my husband is still at home with me and I doubt he'll end up in a SNF. Also, I am not willing to put him in a place where he is ignored, drugged up, and acquires skin and urinary tract infections from sitting around in soiled Depends.

So, even if it kills me (either before or after he dies), I am determined to take care of my husband until he dies.

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Beth


Tue Jul 10, 2012 12:22 am
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Joined: Thu May 31, 2012 6:51 pm
Posts: 60
Post Re: total panic setting in
Hi Everyone:

One more thing I forgot to mention in my previous post. Even though my husband was diagnosed with Lewy Body in March 2012, he was diagnosed as in the moderate stage. Now, his new neurologist is stating that he is entering the severe stage. So, basically, we went through the early stage of this disease before he was diagnosed with it. I believe he was in the early stage of this disease for 5 years before I noticed more significant changes in him, which led me to get him to the neurologist who diagnosed him in Florida.

Now, can everyone understand why I am in such a panic?

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Beth


Tue Jul 10, 2012 12:33 am
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Joined: Sun Oct 17, 2010 2:06 am
Posts: 63
Post Re: total panic setting in
Could you do substitute teaching? And with high debt and no resources do you qualify for Medicaid? We'd all like to help you look beyond the panic and figure out your path. It sounds like you may not have a choice about what you want to do. It may be necessary to do that which you are currently qualified for in order to get an income going. You might also consider filing for bankruptcy, considering that your circumstances have changed so drastically. Good luck.


Tue Jul 10, 2012 3:06 am
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: total panic setting in
Dorthea, I was feeling good about my 30 minute workout at Curves, 3 times a week. I'm hanging my head low and being 20+ years your junior, I'd better rethink my exercise routine. I've always admired you, but this puts me to shame. Keep up the good work, as they say, "use it or loose it", that's exactly what you've done. Take care of yourself, I bet Mr. B is looking down and saying, "see this lady, she's almost 90 and she's healthy"

Fondly, Gerry

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


Tue Jul 10, 2012 6:12 am
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: total panic setting in
Beth, As we all know, if you're not living with Lewy Body, you don't understand what we're going through. The same with your situation, if we haven't walked in your shoes, we don't understand. Take care of yourself, take one day at a time, sometimes one hour at a time.
Gerr

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


Tue Jul 10, 2012 6:18 am
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: total panic setting in
Beth, I was (and am to a point) in the same financial situation. I do still work. But I'm surprised that I still have my job. I'm very lucky in the place that I work and in the people I work with. That said, I lived in terror during the last 5 or so years of Mom's life that I would lose my job as budgets were continually cut and layoffs became a regular event. I fully expected to be let go. In the years of the most intense caregiving, my job performance fell drastically. I would have laid me off. But my wonderful employer was incredibly understanding. Had I lost my job at 59, in today's economy, I suspect I would never have gotten one with a comparable income, every penny of which I needed.

I was able to keep things going and maintain Mom's standard of living up to the point at which she did enter a SNF memory unit. Then, I held onto the house we'd shared for 20 years just in case she had to come back. But I used up all of my credit, savings and income for the next several years doing it. I could not have had Mom at home as long as I did without the wonderful daycare center she attended every day - paid for by Alternative Care (a step before Medicaid) - and my wonderful youngest sister who lives nearby and shared the responsibility. And I'm glad I made that choice. But now I'm paying for it in the significant loss as I try to sell my home for less than I owe (foreclosure is coming but I am hoping for a voluntary foreclosure, aka deed in lieu). I am getting help from a credit counselor to pay down my huge debt before I retire, God willing, six years from now. But I still feel Mom was worth all of the problems.

I know what you mean about nursing homes. My grandmother was in one much like you described. But her placement was in the 80s and had to be done quickly - taking whatever was available. In Mom's case, though we never planned to move her from home, we visited a number of nursing homes, reviewed ratings and interviewed staff. We put her on waiting lists, knowing we may never need the help. But we did need the help for the last year of her life. Like many others, I'd promised her she would die at home in her own bed. But it reached a point at which she needed more than I could provide. The decision was made for her sake, not mine. Having Mom on those waiting lists helped us to be sure we were making the best possible choice in nursing homes. (That and some string-pulling by a hospital social worker.) Yes, she occasionally sat in a wet diaper for a while, mostly because she couldn't talk and her signals were sometimes hard to read. On the other hand, she had strong, healthy and professional staff picking her up when she fell and doing much more to make her life livable. She also had much more companionship than she would have had if she were at home.

Even if you don't plan on it, check out some nursing homes and get on some waiting lists. You don't have to take the first opening that comes up. You simply say that you aren't ready, but you'd like to stay on the list. But this way, you have chosen the nursing home should you ever reach a point at which you just can't manage at home anymore. It doesn't happen to everybody, but even the most stalwart of us can end up accepting that we can no longer do everything for our loved one. Sometimes the nursing home is the loving choice.

Challenged, Medicaid doesn't take debt into account. Only assets and income. Depending upon the financial situation in Beth's area, it may be a lot harder than it seems to even get substitute teaching gigs. There are a lot of out of work teachers and new graduates hoping to substitute for someone. And it often turns out that teachers and schools have their favorites that they constantly choose to take their classes. As a teacher in a specialized area, my sister has about 4 people she selects her substitutes from - and they have to be registered with the district. I don't know what Beth's age is, but I know that unemployment after 55 is hard to overcome. And then, where would she find someone to care for her husband without spending everything she earns each day?

Dorthea, I'm 30 years younger and don't do even a tenth of what you do for your health! I do have an aunt who is very similar and an uncle who can't be stopped. But I'm a wreck! Guess I'd better get on with it! Thanks for the inspiration.

And Dorthea, please consider a funeral account. If you have the funds, put around $10,000 in it. You don't get it back and you can't take it out (you can transfer it to another funeral director, though). But it does assure that the money is there for a decent burial/memorial. I spent $9600 on Mom's service, cremation and burial of her ashes. I did splurge and get Mom and Dad a marker that I am very proud of. That was about $2500. Medicaid doesn't consider money in a funeral account to be an asset or income, so it doesn't affect your qualifications for assistance. And talk with your kids about how to handle your last wishes. I doubt they will need any serious plans for quite some time (you'll outlive us all). They might be fine with covering all of this expense, but they need to understand that the days of the $1000 funeral are long past. Mom's final expenses were a shock to me and we did have her money in a funeral account.

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]


Tue Jul 10, 2012 9:29 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: total panic setting in
Gerry wrote:
Beth, As we all know, if you're not living with Lewy Body, you don't understand what we're going through. The same with your situation, if we haven't walked in your shoes, we don't understand. Take care of yourself, take one day at a time, sometimes one hour at a time.
Gerr
Exactly!

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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.


Tue Jul 10, 2012 9:52 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: total panic setting in
Just for the record there was exactly 6 months between my husband's and my Mom's passing , same funeral director same type of funeral and it was 1000.00 more for my mom's and a few things that he didn't charge us for were not included!!

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Irene Selak


Tue Jul 10, 2012 9:57 am
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: total panic setting in
Yes, the cost keeps going up. And it isn't always the funeral director. Some states, and some cemeteries, have regulation after regulation that adds cost, sometimes significant cost. My insurance agent assures me that, as I have no one depending upon me for support anymore, I can just make sure that the sister acting as my POA and executor receives a portion of my life insurance that would cover my final expenses, as well as the share I want her to have for herself. But I am keeping in mind that, as I don't plan to go anytime soon, there will need to be at least twice as much as I spent on Mom for my final expenses. (Mom's was close to a bare bones memorial, cremation and burial.)

It took me a long time to understand how important this topic is to the remaining family. I'm grateful to all the people who helped me understand before it was too late. It's painful, but prevents a lot more pain at a very difficult time.

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]


Tue Jul 10, 2012 10:31 am
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 758
Location: LA
Post Re: total panic setting in
Kate, Re: the transfer of money from the CD to the funeral director. I had considered that but thought it would be looked upon as a "sleight of hand" trying to do a shady deal at this late date and still work against me when counting my assets. I'm sure of the funeral director which will be used for me. Long time history with this group. My marker/headstone is already in place at the cemetery beside Mr Bobby with a vase between showing two wedding rings entwined and August 8, 1942 proclaiming our wedding date. A single base joining both headstones. All that is needed there will be the date of my departure.

I have the paper work [blank] to fill in for my wishes pertaining to funeral and all. A little sweet remembrance: Years ago we discussed buying into funeral arrangements with our funeral group but Mr Bobby was adament about not letting anyone else handle our money. Folks from "The Depression" are a different breed. We all pray night and day that our country will never return to a situation like that. It could slip upon on us so quickly... ...... enough of that!!!!!

I suppose that paying for my funeral would be no different than paying for a cruise or painting the house. Right?

Dorthea

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"See this lady she's 85 but she's nice", This is the way my husband, Mr B., introduced me in 2006 to the people only he knew. Death due to pneumonia. Lewy Body Dementia diagnosed post mortem at Mayo Clinic in Jacksonville Florida.


Tue Jul 10, 2012 2:32 pm
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 758
Location: LA
Post Re: total panic setting in
Gerry, you are on maintenance; I'm on repair. Maybe I can go to 30 min. instead of two hours but I'm not there yet. Smile

DrP


Tue Jul 10, 2012 2:46 pm
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Joined: Thu May 31, 2012 6:51 pm
Posts: 60
Post Re: total panic setting in
Challenged:

I could do substitute teaching if I wanted to, but the atmosphere in the schools today turns me off. And with the way the economy is, at 57, I don't think my chances of getting a job are all that great. Besides which, the thought of taking my husband to an adult day care center is a challenge that I prefer not to pursue.

As for your bankruptcy idea, the majority of our debt cannot be claimed in a bankruptcy, so that is not an option for us.

Thanks for your ideas, though.

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Beth


Tue Jul 10, 2012 3:07 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: total panic setting in
Dorthea,

It was the county social worker who really pushed me to get the funeral account set up for Mom. It's a move that doesn't count against you if you need assistance. But the CD will. Once in the funeral account, the money is no longer considered an asset.

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]


Tue Jul 10, 2012 3:26 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: total panic setting in
Beth,

Unless you have some kind of assistance like we had with Alternative Care (Elderly Waiver) you would probably spend more on adult daycare than you would make in a day or two of subbing. It sounds like you've made the best choice for the two of you and I know it took great sacrifice on your part to do it.

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]


Tue Jul 10, 2012 3:39 pm
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