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 What do I need to do now? 
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Joined: Fri Feb 16, 2007 6:13 pm
Posts: 102
Location: Fayetteville, AR
Post What do I need to do now?
I guess I went from venting to ranting in my previous post. Reading over it now, it seems like the things I was so worked up about don't really matter. I need to focus on the present and prepare for the future.

I have a question. I'm not positive that I have LBD yet, but I do have some form of early onset dementia. What do my wife and I need to do to prepare? Can anyone give some specific things to do, such as execute a power of attorney/health care proxy, begin to look at nursing homes, check into cashing out one of our life insurance policies, prepare a living trust for our kids, etc? My wife doesn't want to think about these things, but I have to while I still can.

Thank you for your help,

Randy Graves

Sun Feb 18, 2007 3:45 pm
Profile YIM
Hi Randy,
At this point in time I would be looking at DPOA , health care surrogate and a living will and if your state allows a living trust for your wife, the children are too young for a living trust.....Have you contacted Social security yet to get a disability clain going?
These are some of the things I think are important, If you pursue medicaid they can not touch you home.

Sun Feb 18, 2007 4:05 pm

Joined: Fri Jan 26, 2007 2:29 pm
Posts: 57
Location: Wake Forest, NC
Randy, Please make sure someone close to has a medical power of Attorney. I am caring for my mother in law and don't have it. My brother in law has it in a different state. It has made things difficult. Now we are having to JAckie in a nursing home I just hope I will not be affected by not having it.

taking care of Jackie 74 years old mother -in-law

Sun Feb 18, 2007 5:28 pm

Joined: Thu Jan 18, 2007 11:38 pm
Posts: 65
Things that I wished we could have done or prepared before my dad got worse:
1. power of attorney, to this day I've seen varying reports on what is needed a durable power or a medical power of attorney but without it, it is a nightmare.
2. made arrangements for bill paying etc. before he started misplacing, shredding, and disposing of bills and important papers. It would have been helpful if we had transferred all of the financial responsibilities and had known where everything was before he no longer could tell us.
3. a plan in place to deal with wandering, door alarms/ locks. This includes putting dangerous items away - my dad constantly went through drawers - took things apart and was dangerous around knives.
4. provided family members with information with LBD so my mother wouldn't have to constantly answer the questions about his condition. It amazes me how many people are hurtful when they hear your loved one has dementia. I mean it is an illness not something they could have prevented.
5. started seeing a physician that had more experience and knowledge of lbd early on-we couldn't even get his primary to talk to us.
6. sat down with my father and mother and talked (no matter how resistent they were to discussing it) about what we would do when things got bad and how would we define when things would be too bad for him to stay home. In my dads case it happened when he became violent and my mom could no longer handle it. Along that line I wish he could have been involved in choosing the place but my parents preference was to fear any kind of help because that would have been acknowledging that something was wrong.
7. I would really research what help is available - you lost your job I would think you should be eligible for some type of disability-if there isn't there sure should be. My dad was a veteran who fought in a war so he is (we hope) eligible for the VA Aid to Assisted Living. It is worth it to fill out every form, call every number you get and try every avenue.
Hind sight is 20/20 and as fast as things have gone for dad we might not have had time to do the things even if we knew them. We have, since the day we learned what he had, been spinning our wheels trying to keep up. But I do believe that if you can prepare - it is the best gift you can give anyone.

P.S. I also think we become advocates for help - I can't believe that in our country medicare and tricare pay nothing except for if they are in the hospital - why is that? We pay for weight reduction, diabetes education and supplies, addition help but we don't help people who have dementia. It is a crime.

Sun Feb 25, 2007 2:43 pm
Hi Kani,
Such good advice for Randy! I want to comment on the Va helping pay for Assisted Living, if your Dad was in the service during wartime the answer is yes there is help there.

Sun Feb 25, 2007 4:12 pm

Joined: Sat Jan 27, 2007 8:38 pm
Posts: 712
Location: CA
Randy, God bless you for handling this all so forthrightly. Your dear wife does not know how lucky she is (given the circumstances). One thing to remember is that either one or both of you could go in a car accident tomorrow -- don't assume that you will go first or that it will be LBD that gets you. You should both execute healthcare directives. And make sure you identify the "second-tier" person(s) for your healthcare directives, etc. in the tragic event that you both should become incapacitated simultaneously. When Jerome and I were drawing up all the papers, we realized that the second-tier person we wanted would have a moral dilemma carrying out our wishes. So we spared her that decision and chose someone else. But we asked first to make sure that he would not have an ethical or faith issue in executing our wishes. Sending special thoughts and prayers your way.

Sun Mar 18, 2007 9:13 pm
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