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 Made big--and sad--decision today! 
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Joined: Mon Nov 22, 2010 1:24 pm
Posts: 57
Post Re: Made big--and sad--decision today!
Now you have me concerned about my long term plan. Both my husband and I are paying a fortune for it. I hope the company is in business when we need it. Our plan has a 3 month waiting period and then a fixed amount they will pay per month. Cant think what it is off hand. There is also a cash return in the event you dont use it. It sounded like a sound plan but they keep raising the premium. Hope it all works out....
Lynn, do you have a copy of the policy? I am just curious now.
Pat, Hope Dereck has a good day and you too!

Sharon E.


Thu Jan 13, 2011 11:28 am
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: Made big--and sad--decision today!
Pat, you are a saint. I think you should adopt me. Derek is soooo lucky to have you in his corner. Everytime I think about you, I think about that son of his who said his diagnosis sounded "fishy to him.' Like anyone would EVER seek this out as a diagnosis. Maybe he's just afraid he will get it.

By the way, I an glad Derek is resolveing his UTI. I have had a question for you regarding the physician sho did not rx for him for so many days. Is there no way of getting to a physician who is on call for the physician you are using? It seems terrible someone would actually have blooy urine for as many days as he did without getting help...especially in a nursing home. These places are supposed to be subacute care facilities and there needs to be a way to address these things in a more timely manner...like the same day.

Again, please adopt me. You are so on top of things. In admiration, Nan


Thu Jan 13, 2011 1:20 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Made big--and sad--decision today!
Oh, Nan--I doubt if saints use the 'f' word. ;-) I'm not doing anything that the rest of you would not do under similar circumstances.

Yes, I'm disappointed in the way it was handled and let it be known to both physician and SNF. I'll see how it all comes out but he will be getting a new doctor.

_________________
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.


Thu Jan 13, 2011 1:39 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: Made big--and sad--decision today!
Geez, Pat, you've been through the wringer! Wouldn't it be nice to be able to get someone into a SNF without having to fight doctors and CNPs to get the proper care?

I'm glad you found a place you like and I hope Derek can move in soon. Meanwhile, does the SNF have more than one doctor they work with? We had a terrible time with the CNP and doctor initially assigned to Mom, also over a UTI. When Mom moved from the rehab area to the dementia unit, though, I asked if they had any other doctors available and they gave me a list. I looked them all up on the Internet and am really happy with the one we ended up working with. Maybe if you like the SNF otherwise, you could try a different doctor before moving Derek?

Mom's first month's bill was over $9000.00 for the SNF. I've put in the Medicaid application and am still waiting for the response. But that's a lot of money on a monthly basis. Before you decide to go to work mostly to pay Derek's bill, talk with someone at the SNF about Medicaid. Or maybe your local Medicaid office. I know there's the some squeamishness about being on Medicaid, but working means less time with Derek and maybe even depleting finances you may need at some point. I understand that they have a formula identifying what needs to be used for the patient and what the spouse can keep. Do yourself a favor and at least check it out.

If you go back to work for yourself - to have another outlet - all well and good. But if you can improve the doctor situation and then can be happy with the SNF that takes Medicaid, and if Medicaid gives you more time with the man you so obviously love, isn't it worth at least looking into?

The care home does sound great and, if you do move Derek there it could be wonderful. But I'll bet that Derek would want you to be secure financially and not exhaust yourself. I know you want the best for Derek, but I'm also sure that the part of Derek that remembers wants the best for you. Take care of yourself so that you can take care of him.

All my best,

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]


Thu Jan 13, 2011 2:28 pm
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Joined: Tue Feb 23, 2010 10:32 am
Posts: 215
Location: Kalispell, MT
Post Re: Made big--and sad--decision today!
Our LTC insurance has a 30 day elimination period before they will pay. Since it also provides that one day of home care equals a week, I was able to get a home aide once a week for 5 weeks, at their minimum hours per day. That way, I could minimize out of pocket costs before the LTC insurance was available. It will provide only part of the SNF care, but anything is welcome.


Thu Jan 13, 2011 3:00 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3370
Location: Vermont
Post Re: Made big--and sad--decision today!
I do have a copy of the LTC policy. I'm wondering, after my mom died in 1997, if the ins. guy called my dad and tried to get him to increase the amount the policy would pay out but my dad didn't do it. I'll never know. My mom was an astute investor and much better at things like knowing what ALFs and SNFs cost and how much insurance they needed to cover it. I think my dad just forgot about any of that and kept paying the same old premiums when they came due. Afterall, I found a catastrophic health policy that my dad had been paying for for himself AND my mom 12 years after she had died!!! Yet, he still had various life insurance policies that were kept up to date. (thanks Dad) I kind of wish I'd been nosy and looked into his financial affairs years before I did, especially the LTC insurance. He would have been better off to stuff money under his mattress all that time! 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.


Thu Jan 13, 2011 3:03 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: Made big--and sad--decision today!
I know a lot of people don't want to disclose their financial affairs to their kids or other relatives, and of course they have every right not to do so, but I wish I had a nickle for every LO I have seen who was clueless when a parent or relative fell seriously ill or died. I try to persuade clients to leave financial information, including insurance information, in some accessible place "just in case." It is so helpful.

Julianne


Thu Jan 13, 2011 3:16 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3370
Location: Vermont
Post Re: Made big--and sad--decision today!
Luckily my dad used to drag me to the Safe Deposit box at the bank almost every time I went to see him, and papers were well organized and labeled, but I didn't go through policies to see things like how much LTC ins. was going to pay and compare that with facilities costs. I was also lucky that he made me POA for healthcare and business the day after my mom died and it was his idea to do so.
It is remarkable and scary how some of my friends' parents do not do this, and for many they don't even know if their parent has a will and the parent is secretive about it. I think it's a discussion worth having with parents WAY before they become elderly. My kids are in their 20's but they know about assets, where papers are kept, who is POA, Advanced Directive info., etc. I would never want to leave my kids searching and guessing and going through a big hassle because I failed to get my business affairs in order and communicate openly with them. 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.


Thu Jan 13, 2011 3:31 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: Made big--and sad--decision today!
It's a very tough discussion for a lot of people to have, Lynn, and your kids are fortunate that you have been open with them. Good for your dad, too. It is particularly difficult for kids to ask their parents in many cases. Even if the parents don't want to disclose the particulars to their kids during their lifetimes (or while they are competent), it is a big step forward for them at least to organize their papers in one accessible place where the kids logically would go.

Julianne


Thu Jan 13, 2011 3:59 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Made big--and sad--decision today!
A neighbor of mine whose husband died in a SNF last year told me they could not have gotten by without the LTC insurance--it apparently paid most of his bill! He also had a private room like Derek's in the same facility so I know it was over $7K/month. He was only in there nine months, though, before he suddenly passed. He had PD but died of cardiac arrest, I guess. He had asked for the PT to walk him down the hall with his walker, after being immobile for months, and then, later that day, he died. Mercifully, I think.

_________________
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.


Thu Jan 13, 2011 4:09 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Made big--and sad--decision today!
Mercifully.... Absolutely. Dale is not the same person he was even six months ago. I want this to be over for him and me so badly. He 'sees' things that aren't there all the time. He has no interest in anything except sex. This is not living; this is torture.

_________________
Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Thu Jan 13, 2011 7:29 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Made big--and sad--decision today!
His urine was still red this morning but looking better this afternoon. He seems to be having no more spasms.

When I was leaving the SNF this afternoon he mumbled something about why I can't stay home. What he meant was, why I don't stay there, which he still perceives as 'home'. I'm starting to shorten my hours there a bit and that, in addition to some improved cognition [increased Sinemet and/or antibiotics], he is more aware that I'm not 'home' as much. That has me concerned about going to work. I wish he were more interested in the SNF activities. I took him to the auditorium to hear some singers this morning but he wanted to leave. And the activities director came to get him this afternoon for some games in the main dining room but he declined.

What's really frustrating for both of us: He'll sit there and kind of fidget and pull at things, like he's trying to do something but is unable to tell me what and I'm unable to help him. He denies pain, keeps trying to get up but doesn't know what he wants to do. I'm afraid the Sinemet increase, although providing some improved mobility and possibly cognition, has made him edgy and restless [again]. :cry:

_________________
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.


Thu Jan 13, 2011 8:18 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3370
Location: Vermont
Post Re: Made big--and sad--decision today!
Yes, it is like torture. Pat, our experiences are very similar. My dad never wanted to join in the activities either, but he'd complain he was lonely. We tried everything to get him to engage with others and the only time he barely talked to any of the other residents at the ALF was when he sat with 2 - 3 other men for meals, till he had to be taken to the dementia unit to eat. That was really, really, sad too. It was so hard to explain to him why he had to eat there. It broke my heart. 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.


Thu Jan 13, 2011 8:43 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Made big--and sad--decision today!
Ah, Pat, how hard! It sounds positive (for him) that he considers himself home, but sad (for you) that he wants you to stay home with him more.

Until the uti is completely cleared up, I don't think you'll know what his current baseline really is. I'd put any med decisions off until at least that point, if you can.

Coy refuses to participate in a lot of the activities in his day program. In a way, that encourages me. He didn't like sing-alongs when he was well -- why should he suddenly start enjoying them just because he has dementia? At least some of his personality is intact. When my sisters and I were touring an SNF for my mother they proudly pointed to their activities program. We looked at each other and it was clear we were all thinking the same thing. Mother has never shown any interest whatsoever in any kind of crafts or group activities. We'd hate to see her in a setting where she was expected to do those things! Her sister is just the opposite -- always on church committees, one new craft after the other, Ms Social Butterfly (at age 95). Programs would be swell for her.

Are the activities that Derek turned down today things he would have enjoyed before Lewy?

I've sworn to our kids that if they ever put me in a place where I have to listen to television or participate in group games I will surely find a way to come back and haunt them!

What I like about Coy's day program is that there are options. If he doesn't want to listen to the entertainer they've brought in, he can sit in the quiet room and read. And there are activities that he does enjoy.

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


Thu Jan 13, 2011 9:05 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3370
Location: Vermont
Post Re: Made big--and sad--decision today!
Sharon - there are excellent LTC plans out there. My dad just didn't have one. $750 is a drop in the bucket compared to what we had to pay out of pocket. He moved in the ALF telling me "I have insurance that will cover all of this." If I hadn't been convinced he had cognitive issues before that, I sure did then! 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.


Thu Jan 13, 2011 9:09 pm
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