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Joined: Sat Feb 14, 2009 10:54 am
Posts: 3
Location: Nashville, Tennessee
Post Hello
Hello to all

I have been reading this site for some time and learning quite a bit about LBD.

My father has been diagnosed with LBD. We are not sure what stage he is in, presently he is a nursing home. For the past two years we have watched our step mother attempt to care for him. We have had diagnosis of Vascular dementia, Alzhemers, Hydroencephalitic dementia to LBD. He is able to walk but needs to be attended.

He went through an extreme period of weight loss, 60 pounds over five months. During this time he did very little, walked very little and slept most of the time. His weight loss continued.

After his last hospitalization his wife had him put into a nursing home full time. Because we could not get answers, I filled for emergency guardianship for him and presently have Temporary guardianship.

It has taken some time and effort but I have his medical records from all his doctors and hospitalizations. They have been interesting reading. He had no hallucinations, can be lucid at times and later in the day totally unaware of his surroundings. He has difficulty when there is lots of activity and is easily distracted, loses focus. He has tremors on the left side that at times are bad enough that he is unable to read a newspaper or feed himself.

While our family is split, my fathers side vs his wife, we want him to have the best care possible, which we feel has lacked.

So far still reading and learning about this and other conditions from this site. It has been invaluable to me, thank you to each that have posted.

Paul


Sat Feb 14, 2009 1:40 pm
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Joined: Sat Jan 27, 2007 8:38 pm
Posts: 712
Location: CA
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Paul -- For you to have received temporary guardianship, there had to be some good cause. At this point, your father cannot advocate for himself, so it's critical that whomever can be the strongest advocate and care coordinator be the person in charge.

Having said that, though, you haven't said why you believe your father's wife was taking less than optimal care of him. Was moving him to a nursing home, at base, a bad decision? Or is it that you are not confident in this particular nursing home? Or are you having trouble, in general, wrapping your arms around the fact that he is in a nursing home even if it is the best place for him?

As for not getting answers, would his wife not give them to you or did the medical people refuse to release info except to the spouse? If these multiple diagnoses have been going on over the years, where were you and your siblings as his condition progressed -- or did you only step in because of the nursing home admission?

Did your father and his wife have previously prepared documents like durable power of attorney, medical power of attorney, living trust, etc.? If so, that might indicate that your dad had great faith in his wife's ability to make the best decisions in his best interest.

I want to be kind, but I hear a hint of a pissing contest going on between the kids and the wife. I don't hear a lot of negative feedback about the care your dad is currently receiving. What's really at the root of this struggle for control? Is it an emotional reaction to the fact that your father has an uncontrollable, unpredictable, and incurable (and heartbreaking condition)?

In the spirit of full disclosure, I must admit that I am the wife of the last 23 years, with five adult stepchildren who have remained uninvolved, embittered, accusatory and disbelieving about their dad's condition. If they were to step in at this point and try to take guardianship or some such control, and questioned my care decisions over the past five years, I'd be livid. But I would try to understand that perhaps it was just an emotional reaction to finally recognizing/admitting that their dad, as they knew him, is "gone."

Good luck, and may the party with your dad's very best interests at heart "win" -- I'm hoping you will all find a way to come together.

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Renata (and Jerome-in-Heaven)


Sat Feb 14, 2009 3:37 pm
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
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Paul,

I have to agree wholeheatedly with Renata. I too am a wife of 33 years to a man with 3 grown children who have little contact with their dad since his diagnosis and since we stopped financially coddling them. No visits from the "kids" and only a phone call once in a while. However when it comes to the care he and I have decided upon, health care directives, power of attorney, will, etc. etc. then and only then do they have a lot to say. In fact, one told me "when my dad dies I will be there the next day with my attorney on my arm." So if we are reacting a bit negative to part of your post it is that we do wonder whose best interests are being served.
I urge you to all get on the same page...life is far too short and precious...work together on whats best for your dad ..and his wife. This is a terribly cruel disease and I am sure it is difficult for all of you. Perhaps a home is the safest place for your dad and he will get the best possible care there. Is it possible the wife is elderly and it is too much for her to give him the best care? Believe me, it is no easy task caring for a LO with LBD.
Wishing you good luck and keeping you in my prayers.

Dianne

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Dianne C.


Sun Feb 15, 2009 2:45 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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Hi Paul,

Glad you've joined us from the "lurker" position!

I'm sure you regret in some ways having to do what you did, but good for you for identifying the problem and trying to get the best treatment possible for your father.

It does sound like LBD, doesn't it?

Have you read Boeve's Continuum paper, and given it to the MD at the hospital? I hope your father's quality of life can improve with proper treatment. He may not be able to leave the SNF but improvement would be wonderful!

Good luck,
Robin


Sun Feb 15, 2009 3:17 am
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Joined: Sat Feb 14, 2009 10:54 am
Posts: 3
Location: Nashville, Tennessee
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Robin

Thank you for the warm welcome. Each and every day I have to remind myself that what I initiated was the harder of the two roads, and that it is for my father, that I seek custody of him.

It does sound a lot like LBD but it also seems to have some characteristics of normal pressure encephalitis. Between July 2007 and January 2008, my father lost 60 pounds. His medical records for two different hospitalizations list malnutrition and dehydration.

Dianne and Renata thank you for your welcome as well. I am saddened by your situation. Suffice it to say here, this situation is very different. My father and I have been close for most of my life. I am acting in accordance with his wishes. .

Without getting into all of the details, the courts have agreed with me, as well as the attorney Ad litem for my father. His recommendation is what I believe swayed the judge.

In this my father comes first. Insuring that he has a proper diagnosis, proper medications and proper treatment are paramount. It is his care that is most important at this point.


Sun Feb 15, 2009 6:33 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
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Paul,
Let me also welcome you to the LBDA forums and I am so very sorry for your Dad's condition, this had to be hard for you to have to come to terms with but I believe that if a court ruled in your favor they had good reason to for your Dad's well being, I wish you well!

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Irene Selak


Sun Feb 15, 2009 8:27 pm
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Joined: Sat Jan 27, 2007 8:38 pm
Posts: 712
Location: CA
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Paul -- God bless you for taking the harder of the two roads. Your Dad would be proud of you, and we're certain he will get the best care possible through your intervention.
Best,

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Renata (and Jerome-in-Heaven)


Sun Feb 15, 2009 10:21 pm
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
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Paul,

All situations are unique to the individual patient and family. You must take whatever actions are most beneficial to your dad, his health care and his well being. If you are acting within your fathers wishes that is very honorable.
I would be interested to know if your dad had health care directives, power of attorney, etc. already in place or if you had to step in as these important issues had not been addressed.

Wishing you well on this difficult journey as caregiver.

Dianne

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Dianne C.


Mon Feb 16, 2009 12:41 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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Paul,
I think NPH can be diagnosed on the basis of a standard MRI??
Robin


Mon Feb 16, 2009 2:45 am
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Joined: Sat Feb 14, 2009 10:54 am
Posts: 3
Location: Nashville, Tennessee
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robin wrote:
Paul,
I think NPH can be diagnosed on the basis of a standard MRI??
Robin


The confusing factor is that the MRI's were taken as his decline in weight continued. I have wondered and not gotten an answer when I have been able to ask the question,

"can a dehydrated state reduce the effects of NPH? And will rehydration over time cause the effects to reappear?

Prior to his entering the nursing home he could walk with a walker a good distance as he gained weight back, his ability to walk has become more difficult and he seems to be more lethargic.

He has gained 13 pounds from his low but is still considerably lower than his normal weight.


Sat Feb 21, 2009 11:32 am
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