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 New member from New Jersey 
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Joined: Mon May 07, 2012 7:42 pm
Posts: 2
Post New member from New Jersey
I have been reading this forum for a while.
This disease can be so confusing for the caregiver at times. My husband is 58 and was diagnoised with parkinsons six years ago. We were married four years ago, I am 55. We have been together for nine. About three years ago, it became apparent that something else was going on other than parkinson. My husbands doctor was in NYC. My husband complained of memory loss,and felt he was not able to work.(he owned his own business). The doctor was less than helpful. Told him, nicely that his parkinson's was not that bad. Maybe he should seek help from a mental health provider.
During this time, my husband began to do things that were totally out of character for him. Accusing people of stealing money, hearing things that were never said, putting his clothes on inside out or backwards, not showering etc. But the strange part was that it was not consistant. He would be ok for a couple of months, and then drift back. I thought I was making too much of it. Neuro had him evaluated for mental problems. Took him weekly to a mental health professional. Nothing changed. One doctor put him on seroquile and the reaction he had was terrible. During this time he had to stop working because he was forgetting how to do his job, sometimes would become lost in the car going to see friends he had for years. He is now receiving total disability.
I changed his neuro about 18 months ago and she has been wonderful. Understands LBD. He gets up alot at night and refuses to get in or out of the bed on his own if he has to use the bathroom which means I need to get up and pull him up out of the bed. He insists on having the bed so I sleep on our couch.( if he needs to get up for any other reason, he is able to do it himself--can't figure out why he does this)
He also has a home health aid with him all week long so I can work. It can be so overwhelming at times. He can be combative(which is so against the type of person he is) make accusations that his money is being stolen and insist I am making fun of him.
Some days, I feel depressed because I don't understand why he gets so angry with me.
He will not sign a POA. Yet I have his medical POA. He feels that he is very much able to still make his own decisions. His daughter in law(son is from first marriage that lasted five years) has indicated to me that she and her husband will be the one to make decisions once he is no longer able to. They never come to see him and call once every few months.(they live 30 minutes away) I spoke with a lawyer and was told that they could request they be given the POA. That does not make sense to me. I am trying to keep the peace and not cause a problem between my husband and his son. And he is in no condition to get into a battle over this. My grandma had dementia and I think that was easier to deal with then LBD. So many times, I have had hope that it was something else when he has those good periods. But then I come back to reality. Thanks for listening. There are no support groups in my area, and people have enough of their own problems with me unloading mine on them.


Tue Jun 12, 2012 11:22 am

Joined: Mon Feb 14, 2011 10:22 pm
Posts: 194
Location: Portland, Or
Post Re: New member from New Jersey
Welcome to the Forums! I wish none of us had to be here but am SO grateful that this outlet exists. I have found so much information and insight here, and even though all of our individual stories and circumstances are different, it's helpful to have a place to vent or seek help. I have found that what works for me is to read all the posts and take what I need and disregard what I don't. Good luck in your journey.

Ellen 60, caregiver for mom Marion 82, dx LBD Feb 2011 died April 11, 2015

Tue Jun 12, 2012 11:35 am

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Post Re: New member from New Jersey
Mari - so sorry for your situation. Can you meet with your stepson (just the two of you) and see if you can work something out re: POA? This is obviously a really important issue that needs to be settled before your husband needs to have someone else making decisions in his best interest, and the last thing you need is a family feud at that time. Maybe you and your stepson meeting with a counselor who works with families of dementia patients or a social worker could help mediate?
I know it's so hard to not take the anger personally, but it really is the disease talking, not your husband when he is yelling at you, being mean, accusatory, etc. You are doing the best you can, and you need to not feel guilty when you are doing everything you can to help him and yourself.
Are you getting good sleep? If you are sleeping in a sofa you may not be getting the best sleep, and you will need to sleep well to stay strong and healthy. CGing is stressful enough without trying to do it with badly compromised sleep.
Please take care of yourself too. I wish you the best through a very tough situation. 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.

Tue Jun 12, 2012 11:51 am

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: New member from New Jersey
Welcome but sorry you've had to join here. You might spend some time perusing past posts of topics of interest to you in the various sections of the forum.

Tue Jun 12, 2012 12:07 pm

Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: New member from New Jersey
Dementia at any age is heart breaking. For it to hit so early seems especially cruel.

Can you discuss the POA when your husband is in a particulary lucid period? "Yes, I know that you can still make your own decisions, and I am so grateful that you can. We need to have it in writing who you want to help you make financial decisions if you ever can't do it yourself. If we wait until you reach that point, you won't be allowed to make that decision. I just don't want to see a court appoint someone to make your decisions and that's why I want you to take that step now."

It is really true that getting someone to assign POA while they are still competent is a way of extending their power, not taking it away. That is logical and dementia patients are not always big on logic, but with LBD they often have periods where logic can get through. Hope for one of those periods!

His son cannot simply take over and make decisions, without the authorization of a POA or guardianship, etc. I don't know what your financial situation is like, whether there are jointly owned assets, a lot in his name alone, etc. If you have not yet seen an attorney that specializes in elder law, I urge you to do that. Dealing with the disease and disability is challenging enough. Get your financial ducks in a row as soon as possible and lessen the future stress.

I believe that New Jersey is one of the states where Medicaid is automatically granted with disability. That isn't true in my state (and also my husband was not in the workforce when dementia hit) and I don't have any experience with that. But if your husband is already qualified for/receiving Medicaid benefits that is at least one less thing to have to deal with. If not, discussing it with an attorney sooner rather than later would be a good plan, in my opinion.

If he is competent in the legal sense, your husband could assign POA to you, or to his son, or to a bowling buddy. Getting this decided will help everyone know and adjust to their future roles.

Did you have a lawyer helping with the disability claim? If that was a successful relationship perhaps you could ask him or her for a referral to a colleague who specializes in elder law.

Dealing with the problems in our husbands' brains is nearly overwhelming sometimes. Dealing with the legal and financial realities is also overwhelming (at least for me). Hugs to you as you struggle with this double burden. I hope you find some comfort in being among others who have/are struggling, too.

Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012

Tue Jun 12, 2012 1:37 pm

Joined: Sun Jun 24, 2007 5:35 pm
Posts: 349
Post Re: New member from New Jersey
Mari, welcome. You are among friends who understand here.
I agree that the POA needs to be resolved sooner rather than later. That one is a ticking time bomb that you do not need. There is more than enough on your plate.
Hugs to you,

Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url][/url]

Sat Jun 23, 2012 5:15 pm

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: New member from New Jersey
Welcome to the LBDA forums, sorry for the need but I do hope it can be a place of information and comfort to you in you LBD travels!

Irene Selak

Sat Jun 23, 2012 9:14 pm
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