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 remember three things should be eliminated 
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: remember three things should be eliminated
You may still be able to get POA, but go through a reputable attorney. I got the name of a specialist in elderlaw from my insurance agent. I figured she'd have had more business with an attorney than anyone else.

It was money very well spent. And Mom doesn't have much to throw around. Just months after we completed the end of life documentation, Mom fell and broke her shoulders. Unfortunately, we hadn't had the LBD diagnosis yet, so even if the doctors were familiar with it, they didn't think of it in connection with Mom and the meds they gave her did a lot of damage. If we hadn't done the documentation at that time, I would have been in a mess. It's still messy, but at least I have legal authority to take care of it, plus a Will and a Medical Directive to back me up when dealing with the rest of the family.

Most attorneys don't charge for the initial consultation. Only when you tell them that yes, you do want them to draw up end-of-life documentation will they begin to charge you. Our attorney, one of the top three in Minnesota, charged a flat fee of $1500.00 for Mom's. It is also an allowable expense to be paid out of your Mom's resources and, I think, I remember that it was tax deductable.

If the attorney doesn't think your Mom is competent enough to go this route, he/she should suggest alternatives. If you do have to go for guardianship or conservator, you'll have to keep even more detailed records than as POA (which, at least here, isn't all that strict or burdensome). There are also a lot of other regulations to comply with as a guardian. I checked with our county for information and they emailed me a detailed manual for guardians to work with.

But if your Mom is only 2 years in, you should be able to go with POA. The important thing is that you get started on it ASAP. And get a referral from a business person that you trust and is likely to do a good deal of business with that attorney. Even if the attorney they know is a specialist in something else, they are likely to be part of a firm that includes elderlaw specialists.

Good luck with this. Once you get started. you'll be surprised at how easy POA is. By the way, I have 3 sisters, but I took Mom to the law office alone. Mom needed to make her own decisions without pressure from her children. I'm glad we did it this way.

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]


Fri Sep 10, 2010 11:44 pm
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Joined: Sun Sep 05, 2010 4:46 pm
Posts: 29
Post Re: remember three things should be eliminated
Do ALF really deal with LBD that well. Or is the Memory care Unit the way to go? My 84 female LO is needing to move from independent for sure
her Parkinson's/shakes & anxieties are getting worse. Frustrating as the meds & the Dr's are not willing to try another group of meds. From what I am learning from this disease there really is not 100% of anything that works. Those of U that have your LO living with U are U thinking of moving them to more assist? OK enough questions. Today was jsut a bad day trying to find living arrangements for her. Nothing is right she gets claustophobic. So many different types of Asssited Living facilities.
Also very expensive once they start assessing. We had 2 places today who did not see the need like the larger more franchise facilities.


Tue Sep 21, 2010 6:26 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3359
Location: Vermont
Post Re: remember three things should be eliminated
It completey depends on the ALF how well they will take care of your LO and understand her needs.
Did you mean that some did not see the need for her to move to an assisted living type of situation? If so, on what basis did they reach that conclusion? If your LO was doing "show time" and acting very capable, you know the level at which she functions at home better than they do. You may need to make some visits or phone calls without her so you can truthfully say what her needs and issues are. Good luck. It's difficult to find the right place. Lynn

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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.


Tue Sep 21, 2010 7:15 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: remember three things should be eliminated
If you are looking at assisted living facilities, dementia care (memory care) is the way to go. Be sure to ask how much dementia training the staff has all received.


Tue Sep 21, 2010 11:34 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: remember three things should be eliminated
another question that can be asked is:
How many LBD residents to they have and had in past.

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Irene Selak


Wed Sep 22, 2010 6:37 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: remember three things should be eliminated
I'm one of those with Mom living with me. Actually, we refer to it more as living together, since we have been doing this for many years, largely an economic decision. Neither of us could have afforded the house we have alone, but our combined finances made it happen. About a year and a half ago, we did look at ALF living. The places we looked at were beautiful and seemed to be great places to live in. But awfully expensive. The only way we could afford it for Mom is if we continued to share a home - this time in an ALF. But we had our house on the market for a year trying to make this happen. No one wanted to pay the price I needed to get.
So, for Mom it's stay at home, or a memory unit or a SNF. There are reasons that each would be a good choice.
Home has that emotional tug. Home is where I can take care of her and not wonder about the care she is receiving. Besides, I feel I owe her - and daughterly duty and all of that. My grandmother had to live in an SNF for the last several years of her life. Mom and her sister bore the brunt of this arrangement and Grandma was not happy or easy on either of them. She had good reason. The facility was one of those you move into at the last minute and the care was not as good as it should have been. I don't want to have Mom that unhappy so keep her at home, largely while we wait for an opening at a highly rated facility. I've got Mom on waiting lists at two memory care facilities and we're waiting to hear how soon we can get serious about this. But the emotions run high on this and I find myself arguing with my other self about whether a good daughter would move her Mom into a facility.
But, there's another side. In a memory unit, there are all kinds of therapy and stimulation that would make Mom's life more interesting. There are trained staff there that know how to deal with dementia and its issues. Selfishly, I wouldn't have to be changing the linens on her bed so often - someone else would do that. And if she entered one while still having some cognition, she would be able to pick up the routine and find her way around before it became a problem. And there's a financial benefit. Mom will need to be on Medicaid very soon. I still haven't found out if this is restricted to SNFs or not, but when that happens, and if she is in an SNF/memory unit, her medications become considered medical care, rather than prescriptions, and Medicaid will cover their cost. Part D insurance doesn't do this, at least not for the not as costly insurance (the one the Medicare web site said fit our needs best. In an SNF/memory unit, Mom would save about $1500.00/month in co-pays - more than she gets with Social Security. That's a big deal and could end up making the decision for us.
Mom's team at the Memory Clinic is pointing all of this out to me and encouraging me to make this move for Mom. Still, it's very hard to go through with it. But advance planning and avoiding a situation in which we'd have to do something quickly will allow us to get Mom into a nicer facility than her Mom had. And that's REALLY important to me.
So I can't tell you what to do or even what I'll do when an opening comes up. Mom's so sweet that I'm enjoying a lot about having her at home. But I may be selfish about this. The advice I'm getting is that Mom could really do a lot better in a memory unit.
Back in the day, my little sister was awarded a scholarship to finish high school at a prestigious arts academy two states away. I think there are some similarities here. Mom knew that there were huge advantages for my sister at this school, but was very nervous about letting her 15 year old to leave her direct care. This was her baby. Well, I know that there are some great advantages for Mom in a memory care unit, but I'm not ready to let her go. This is my Mommy. I just hope that, when I have to make this decision, I have Mom's courage and clear sight.

I don't know if this helps you or not. We say it a lot on this forum, but it is true that every situation is different and you have to make these decisions based on your own situation. But don't feel that the only good child is the one who keeps Mom or Dad at home for the rest of his or her life. Some of the best daughters and sons do what is best for their parents, regardless of how it makes them feel or the guilt they may need to deal with.

That puts you back where you started, doesn't it. I hope it helps you a little bit, anyway.

Best wishes.

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]


Thu Sep 23, 2010 2:49 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: remember three things should be eliminated
My husband was in a memory care facility from June to September of 2009, while I was selling our home, buying another, and moving. I lived in my motorhome just a few blocks from the facility so was able to walk over every day at least once a day. The staff were obviously trained in caring for people with dementia and were even familiar with the different types, although most of the residents had AD and most were women [16 of 20]. In this particular unit, the residents must be ambulatory, e.g., either walking or able to propel a wheelchair. I'm sure there are others that don't have that requirement. Though my husband was private pay, they did then accept Medicaid. A letter came out last year at some time, though, stating that they would no longer be accepting Medicaid residents who were not already on board. I found the following website invaluable in looking for placement: http://www.snapforseniors.com/Housing.aspx

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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.


Thu Sep 23, 2010 10:27 am
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Joined: Thu Aug 26, 2010 7:11 pm
Posts: 31
Post Re: remember three things should be eliminated
A little update on my mom.... Cognitively nothing has really changed much, but unfortanately I think I was too optimistic that she might not have the Parkinsonian symptoms. I took her to a neurologist who saw early stages of rigidity and a PT assessed her at the adult day care where I've enrolled her and found her knees don't bend so well.

I'm going to a legal workshop on Friday because I still haven't actually gotten the durable power of attorney and I haven't figured out the path to MediCal yet either.

I'm not 100% sold on this adult day care and would like some of your thoughts. UCI said she would benefit from this and the facility is truly outstanding, but my mom is still in relatively early stages of memory loss. Most of the people at this facility are much more progressed in their dementias. I'm not convinced that being surrounded by advanced dementia patients is healthy for my mom while she is still in the early stages of cognitive issues. They treat her like a child there and that really bugs me.

I really want her to get more stimulation and activities during the day, but I'm not convinced this is good for her. I was so excited about it initially, yet am really disappointed and saddened that mom is not enjoying it. She's doing her best to make the most of it because she trusts me and wants to make me happy, but she hates it and I'm not sure it's doing more harm than good.

Do any of you have any thoughts on this?


Wed Oct 13, 2010 2:46 am
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: remember three things should be eliminated
I had Frank signed up for 2 days a week 9-2:30 and asked if he would just try it for 6 weeks, as suggested. He hated it and after 4 weeks he refused to get out of the car. He was probably worse off tha 1/2 the residents but he didn't see it that way. I think the fact that the door was locked behind him didn't sit well. I told his pychiatrist about his unwillingness to get out of the car and he said I wouldn't accomplish anything by forcing him, you can pick a toddler up and carry him in but a 70 old, 155 man, well he's not moving. We did stop going and I have since hired a woman to come in for 4 hours on Wednsdays, that lets me get some errands done in a timely fashion. Good luck, I'm sure it's helpful for you but I understand your not being sure if it is actually benefiting your mom.
Gerry

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


Wed Oct 13, 2010 8:34 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3359
Location: Vermont
Post Re: remember three things should be eliminated
We've had a similar situation with my dad at his ALF. He doesn't like doing the activities with the people who don't have dementia because I think he's embarassed about his speech and memory issues. Yet, he also HATES going to the dementia unit to be fed and to do activities there because he says "all those little old ladies have dementia and are half-dead". So, he's feeling kind of "too healthy and together" for one group and "not healthy enough" for the other group so he stays in his room all the time and now is yelling for help again all day just so someone will come in to see him. :cry: No matter what, he is still unhappy and getting agitated again. I hope you find a solution better than what we've been able to do. Lynn

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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.


Wed Oct 13, 2010 3:10 pm
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Joined: Wed Aug 11, 2010 2:34 am
Posts: 54
Post Re: remember three things should be eliminated
I spoke to the head of dads ALF this week after visiting him, and he again had told me "It's so depressing, nobody laughs" and a tend to agree as the other 6 or so residents in his area are ladies or gentlemen who need help to even feed themselves and dad feels and I do too that he is not at the same level as they are and anyway he is getting a visit from the an assessor who will then suggest things that can occupy dad and get him more active according to his level of dementia. I am grateful that they are aware of the way his is feeling and making ways for his time there to be a more enjoyable one rather than doom and gloom.


Wed Oct 13, 2010 10:17 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: remember three things should be eliminated
I think each daycare is a little different, depending on the personalities there and the size and qualifications of the staff and volunteers.

Mom goes to daycare 5 days a week for 6 to 7 hours a day. She refers to it as either "school" or "work." They have a large staff of social workers, nurses and PCAs. They also have several therapy dogs - one who seems to be around all of the time. With the help of the staff, Mom has found a group of friends with similar issues and tastes. There are exercise sessions, travelogues, word games, singing, morning snacks, lunch and afternoon snacks. The staff also works individually with Mom to be sure she does her exercises. OT and PT come in from the network of ALF/SNF that the daycare is associated with.

At first I think Mom went for my sake, so that I would know she was safe and occupied while I have to work. (No workee, no eatee) Now she really enjoys it and gets concerned if we skip a day.

One thing that might have helped: Mom's birthday came along a month after she started at daycare. Following the example of another family, we brought in a huge birthday cake for everyone there. After that, they all knew who she was and they talked about her "nice daughters." That's when she really started to make friends. (I'm really into using food as ice-breakers or bribes.)

Granted, you really can't drag an older person around until you find the right daycare. But you can check them out and ask a bunch of questions. Some will let you spend an hour or two, observing the day so that you can get a good feel as to whether it is the right one for your LO.

All of the good senior daycares, in my opinion, have doors locked during the day. It may even be a state regulation. This is not just to keep people in, but also to keep intruders out. I read in the local paper how some senior centers and SNFs were finding that strangers were coming in and getting the clients to sign over POA to these strangers. Then, these people would pilfer the client's bank accounts, etc. This is one of the reasons for the locked doors, not to keep clients in (though that is another purpose), but to keep scammers out.

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]


Wed Oct 13, 2010 11:15 pm
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