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 I have no clue what to do.... 
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Joined: Fri Aug 20, 2010 3:49 pm
Posts: 3
Post I have no clue what to do....
This is a sticky situation...

My mom is 64 and was diagnosed with LBD last summer. In the last year the symptoms have progressed so rapidly. Lots of hullucinations (driving her car on a plane???) and has been asking about her parents alot (they died several years ago and she's upset because "no one told her"). She does have a little knee soreness but for the most part is physically ok...She lives with my dad but needs his assistance managing and administering her meds and house hold chores. Her time perception is not well. She's in bed at 6:30-7:00 every night. She doesn't do much during the day. She is still driving (but we have to pull the trigger on that one soon).

Here's the tricky part.....

My dad is an alcoholic and also has develeloped what we think is social anxiety. This has gotten worse over the past couple years. We've told him that he has to manage her medication administration and go with her to her PCP doctor's appts. (I'm the oldest of 3, and we take her to her neurologist appts). He will "yes" us to death when we tell him that he has to transition into the care giver role, however then we find out that he sends her to her doctor appts alone. He does claim that she tells him that she doesn't want him to go but he won't combat her. It's gotten to the point that we don't trust what he does/doesn't do. He starts his drinking about noontime and will drink til he goes to bed - usually around 8ish. He never wants to leave the house and pretty much lives his own separate life in the house. What should I do???? Safety wise, as far as I know, she is ok in the house. But as far as actual support, I know he doesn't give her that. I can see that it does get frustrating, it is a pain answering the same questions over and over again, but he's being more counterproductive) I'm married and have 3 small children and live an hour away. I have 2 younger brothers in their late 20's early 30's still enjoying the bachelor life. Technically, there is a "competent" adult in the house, but we can't really count on my dad to be the responsible caregiver. Any suggestions on how we should handle the situation in the present and future? At some point do we have to pull her out of the house?


Fri Mar 11, 2011 4:27 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3176
Location: WA
Post Re: I have no clue what to do....
To be blunt, yes. And please don't let her drive! Sorry to hear of such a tragic story but children often have to step in and take charge when their parents are unable or unwilling to care for themselves. Do you know if your mother has designated any alternative health care power of attorney [other than your father]? A medical social worker might be a good first step [check with a local hospital or home health agency]. If you can arrange a family conference--at least by phone--then everyone can have input. It's so important that you are all on the same page. God bless you as you deal with these issues.

_________________
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.


Fri Mar 11, 2011 4:37 pm
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Joined: Wed Mar 09, 2011 12:22 am
Posts: 75
Post Re: I have no clue what to do....
I fear you have two very separate and serious issues with your folks. Unfortunately, one needs as much help as the other. Is there anyway you can convince your dad to dry out? If not, then he will never be any assistance to his wife, to you, or to himself, for that matter. I would most def get a social worker in there...and I would try to get those power of attorneys in place for both of them asap...both a general and durable medical poa. The hardest step is always the first one. Praying for your family...as I pray for all the LBD and ALZ families who have been thrust into this chaos. There is strength to be tapped into....and He will provide.

_________________
~~Debra, 52, wife to Chris, 64 DX Vascular Dementia 9/10; Alz 10 or 11/2010; Pseudo Dementia 01/11; LBD in 03/11..Was at home until 4/29, 2011, now in a Alz fac./dementia unit.
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Fri Mar 11, 2011 5:02 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: I have no clue what to do....
It sounds like it's time for a family meeting and the kids need to step up. Perhaps you can hire a geriatric care manager (find one at caremanager.org) to oversee your mother's care. Perhaps that person can come up with an idea about medication management as that is probably not happening either.

And perhaps you can hire a housekeeper.

Has anyone suggested that you not tell your mother that these family members have died?

I think the driving should be discussed with the neurologist ASAP.


Fri Mar 11, 2011 5:45 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3118
Location: Vermont
Post Re: I have no clue what to do....
So sorry you are in the sandwich generation and dealing with 2 ill parents. Personally, I'd call in a social worker asap, check the legal documents and try to get POA (or have another responsible family member get POA) and have a family meeting. You probably know your mom should NOT be driving at all, and neither should your dad with the alcohol issue. Time for the family to rally and get some help in there immediately. This is a big safety situation for both parents, plus with either of them driving, it's a safety issue for anyone else on the road. Hang in there and try to get those siblings to step up! 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.


Fri Mar 11, 2011 8:07 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: I have no clue what to do....
Coreyk,

I am so sorry for your situation. It is truly challenging and sad.

Giving up driving was perhaps the hardest loss for my husband to deal with -- I think he grieved that for more than a year. But it was absolutely essential very early on. We were lucky in the way it was handled. On our next visit after his PCP got the letter with the diagnosis of lbd from his neurologist, she said how sorry she was about the diagnosis, assured him that he was in excellent hands with his care team, etc. And she said, "I am required to report this diagnosis to the state, and you will no longer be able to drive." She didn't say whether she was required by law or by the clinic or by her conscience, but I was very grateful to have the matter taken out of my hands. If at all possible, I think this is a role a medical professional should play.

When my husband told me about seeing and talking to his brother who had been dead for several years, I said, "You really love Fred, don't you? What games did you used to play when you were boys?" Their hallucinations and delusions are very real to our loved ones. Trying to reason or argue them out them is not likely to succeed.

It is not fair that your young brothers should have their lives interupted by this family crisis. It is not fair to you or your children or your husband that you have to spend so much time on these issues. It is especially and overwhelmingly not fair to your mother to be struck with this terrible disease, and at such a young age to boot. (It is official. Life is not fair.) But fair or not, we all muddle along doing the best we can to deal it. I hope your brothers will take this final opportunity to bond in a special way with their mother, to create new ties to you and your family by relieving you of some of the caregiver responsibilities, and to grow in their capacity for committment and love. You might want to view this video that Robin brought to our attention, and perhaps share it with your brothers, too: http://www.youtube.com/watch?v=43XWaIlx3Zc

Jeanne

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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


Sat Mar 12, 2011 1:01 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: I have no clue what to do....
CoreyK,
Such a sad situation but this is not the time to let it get to you as there is much work to be done and reversing roles with your parents is not easy, I too am not going to mention too much on the driving as I believe you know she shouldn't be doing it but I will say when it came time for my husband to no longer drive I brough it to the Doctor's attention and he took care of it through the DMV, so it kind of left me in the clear as to doing it . I agree with everyone else you need to get a social worker in there to help see the situation, perhaps you could call the office of aging in the immediate area.
Good Luck!

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Irene Selak


Sat Mar 12, 2011 12:40 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3118
Location: Vermont
Post Re: I have no clue what to do....
Many doctors do not want to be the bad guy and say no to driving. Laws probably vary from state to state as well. We tried to get my dad's dr. to tell him he couldn't drive but he would only SUGGEST that he not drive. I had to be the bad guy and have the talk (again) about safety and I finally took the keys away. It was a very tough day for me and my dad but I had to do it for everyone else's sake on the road, besides my dad. It is hard but something that just has to be done. You'll have the support of your friends 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.


Sat Mar 12, 2011 1:09 pm
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: I have no clue what to do....
the driving issue is one of the hardest for sure.. but after attending the alz support meeting and hearing of a gentleman, that kept driving and ended up lost and stalled on the railroad tracks (they got him out in time) that put the toughness in me and also our state requires the docs to tell the dmv upon diagnoses and the next test a week later, ended his driving.. but a year and a half later he still spend lots of day practicing and preparing for the written part he still wants to take.. tha breaks my heart.. but i know hes safe and so are others, he might unintentionally hurt..

living around a lot of alcoholics growing up, i can truly feel for you and your situation...
if you cant get help in.. it might be time to look for an assisted living area.. so that your mom gets the care she needs.. changing your dad at this time, probably is not going to happen.. but maybe once they get in a place, where they can both relax, with less stress.... it might make it easier, on both of them.

best of luck to you

cindi

_________________
sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 1-14,released to memory care..


Sat Mar 12, 2011 2:13 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3118
Location: Vermont
Post Re: I have no clue what to do....
I know of a grown brother and sister who are both being sued by the victims of a car accident which was caused by these two folks' parent, who shouldn't have been driving. They have been named, as well as the parent, and now they have to pay an atty. and go through all the headaches of the lawsuit. When I told my dad that, he quit complaining so much about my taking the keys away. 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.


Sat Mar 12, 2011 2:46 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3176
Location: WA
Post Re: I have no clue what to do....
Just tell her that her insurance policy was canceled because of her illness. They probably would, if they knew.

Lynn, that's a good point. Not that it will necessarily carry any weight with the affected person but it should with family members who have legal responsibility for him/her. And, I might add that, if they knew that a doctor advised the person not to drive and their parent [or other LO] caused an accident, they could be culpable, at least in some states.

_________________
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.


Sat Mar 12, 2011 4:14 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: I have no clue what to do....
..... Or just hide the car keys. Make her think she can't remember where she put them.

My own dad ran into the side of his garage three times before we could get him to give up the keys. Mother never learned to drive and he was sure he could ... even after taking several falls because of his very unreliable feet. It's a tough one.

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


Sat Mar 12, 2011 5:23 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3118
Location: Vermont
Post Re: I have no clue what to do....
Stopping driving is not only emotionally traumatic for everyone, but in many people's cases, like my dad's, all the daily issues become HUGE. How would he get to PT, how would he get groceries, how would he go see his friends, who would drive his friends who could no longer drive, how would he get to dr. appts., who would pick up and take home his gardener? These are very real issues for many people. There is no public transportation or taxis in many communities, like where my dad lived. My explaining that he couldn't drive anymore from a safety standpoint meant a whole lot of other organizing and problem solving. It wasn't easy. I had some temporary solutions, but since he lived by himself it was a logistical nightmare for me when I went back home, 500 mi. away. I'd get calls from people in MD, while I was in VT, saying "I can't pick your dad up as planned", etc. I was getting that all lined up, and 3 weeks later he was hospitalized and never went home again. Looking back on it, I really don't know how we would have dealt with the transportation issue long-term. Probably I would have had to hire the home health service people to do more than just be with him a few hours a 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.


Sat Mar 12, 2011 8:48 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: I have no clue what to do....
Lynn... I just hope I have the sense to realize when my kids tell me I can't drive anymore to turn over the keys. :| That's going to be a hard one!

My Ex is 76 and flies a twin. He is really worried the FAA won't let him pass a physical. He has no health issues. It's just that they have three homes and flying between them is a way of life.

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


Sat Mar 12, 2011 10:19 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: I have no clue what to do....
I have tried to use my experiences with my dad, to hopefully, make things easier for my own kids when the time comes. I have promised them that when they tell me it's time to turn over the keys to remind me not to whine or refuse. I hope I can do that for them, and if I'm stubborn about it they know they are to take the keys so everyone is safe from me if I am unsafe on the roads. I will probably have to go through the same thing with my sister that I did with my dad since she has no kids to do this for her. I am not looking forward to doing this again some day...... Maybe she'll have another husband by then and I'll be off the hook! 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.


Sat Mar 12, 2011 10:28 pm
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