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hello all

Posted by sistersunnie (My Page) on
Tue, May 10, 05 at 17:50

as way of an intro, I'm 43 caring for my husband(61) diagnosed with Parkinson's Plus and Lewy Body Dementia in 2001. We've been managing with friends, family and paid help at home so far. Our teenage daughters are coping, but barely. He's not quite gone enough to be unaware, but theres enough flucuation for it to be bewildering. I'm exhausted, angry, overwhelmed and discouraged. If ever people would understand , it would be this group.

It seems so difficult to begin each day again, I dont know how I can do this for years more to come.....

sistersunnie


Follow-Up Postings:

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RE: hello all

Hi sistersunnie & welcome to the CG forum! Yes, this group will understand the emotions you're describing... You're DH sounds like a very sick man who requires much attention. It's no wonder you're exhausted... Is there any professional help available to you through Parkinson's Plus or LBD??? Have you looked into the Area Agency on Aging for assistance? He's 61; I'm not sure what their minimum age requirement is...

Come here and ask questions or simply vent... Try not to wonder how you can do this for years more to come. All any of us can do is ONE DAY AT A TIME. That's more than enough to handle... I was always calling on God to help me throughout each day. I never could have made it any other way. May He bless and encourage you and renew your strength daily. ~abreeze


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RE: hello all

Welcome! You have truly found a group of people who will be of encouragement and support to you. You can vent all you want. These people are very understanding. They also give useful advice! Again, welcome! Pearl


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RE: hello all

Welcome, I also want to add that this is the place to come...wonderful loving friends that will support you...most of all listen...we all need to vent and have someone to...just...listen....this is the place. Feelings and emotions...of all kinds are o.k.....caregiving is not an easy journey....your cup is overflowing but as Breezy has said....just "one day at a time"...I am sure you know that it can be just "one second at a time". It is good to hear that you have support from, family,friends..and paid help....but...there are times that those close to us just aren't the ones for us to sound off or vent to. We will be here for you...many of us are still on our journey of caregiving and many still come to listen even after their journey has ended....all care!!!! Saying a prayer for you,your DH and daughters. God Bless, Nora


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RE: hello all

Add scared.... we now have a gun issue. He gets so delusional at night and last night I woke up to a him standing by the bed with a loaded pistol. He was convinced their were people in the house. I thought we had locked up all his guns but OBVIOUSLY NOT! Got it away and calmed him down. Locked up the gun. Initial crisis averted but... every day brings something. My daughters sleep with their doors locked....

Partially my fault as I missed finding that gun, AND I fell asleep. But I am exhausted and it happens. Please pray for us.

Thank you for all your kind words.


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RE: hello all

You said that your teen age daughters are just barely coping. Have you discussed with them what the options are for his care? He may get to a point where you will have to decide whether to forget about your daughters well being or place him in custodial care. While taking it one day at a time is excellent advice, don't ignore the fact that your girls also need you. You have a BIG obligation to them too.


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RE: hello all

Welome, Sistersunnie!

This is a terrific group of people, and it's been so comforting to have a place where folks understand you. Good advice, or sometimes, just a shoulder to lean on!

Helene


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RE: hello all

Good morning, sunnie... My goodness, don't apologize for falling asleep! You have to get some rest, or your body will lock up. I've been there. Exhaustion is really indescribable, isn't it...

Now what about those guns... Have you thought of taking them to a gun shop and see if they would buy them from you or possibly sell them for you??? I don't want to alarm you, but what kind of strength does he have when his adrenaline is flowing? May God bless you and your precious family and keep you safe. May He minister healing to your DH. ~breezy


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RE: hello all

My father had Alzheimer's from the late 60's through his death in the early 80's. That was before they really knew anything about it. He used to become agitated and delusional, mostly at night, and one time tried to attack my mother with a knife, thinking she was a stranger who had broken into their home. I agree about getting rid of the gun/s. Even though my father's mind was going, he had such incredible strength that it was scary. Even if you lock them up, you still can't be sure that he won't find a way to access them. The mental strain and anguish this situation creates is hard enough without adding worry about putting your family in harm's way. It's hard enough dealing with day to day life without the extra worry of whether your family is safe from physical violence. He is not the same person he was and you will come to terms with that and deal accordingly. Check with his doctor about support groups in your area and speak with your daughters about going


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RE: hello all

Hello, and welcome to our little corner of the world, Sunnie! As the other gals said, we've all been to extremes of emotion...have coped well, and have fallen apart...just know that you can come here and not be judged in any way. We've all been there, done that.

Now. With regard to his delusions: my 91-year old Mother was recently placed in a nursing home, diagnosed with 3rd, or final stage Alzeimer's. She, too, thought there were people in our home (she lived with us), and that TV characters were actually IN the room with her. It was cute when she asked if I could please ask those people from Swiss Chalet to leave because she wanted to go to sleep, but not funny when she was terrified of a big man with a gun in her room because the country music channel switched to an old Dukes of Hazzard! Good grief. ;-)

There is a syndrome called "Sundowners Syndrome", where those with dementia like your DH have more episodes of confusion, and become very restless. They can be a danger to themselves, or, if agitated, to others. It's not "them", it's that horrible disease that's causing it. However, it's real enough to be concerned about. Please speak to his doctor about it: my Mother was prescribed Donepezil is used to treat Alzheimer's disease. Donepezil is in a class of medications called cholinesterase inhibitors. It improves mental function by increasing the amount of a certain natural substance in the brain. She had far fewer delusional episodes...in fact, almost none at all with that med! And she was more relaxed in the evenings and spent less time wandering. It was a little miracle.

Sunnie: I cared for my Mother here in our home for over 11 years, but the time finally came when I could no longer provide everything she required. I couldn't lift her anymore, as she became more limp and couldn't help herself stand or walk, and all I was doing was trying to keep ahead of the underwear (adult briefs) changes, meds, foods, etc. I was exhausted and it wasn't fair to my husband: our retirement years were going by so quickly, and I had to think of US too. No one needs to be a hero. No one is asked to do more than they're capable of doing. No one is asked to forgo their health for the sake of another. No one is asked to make a choice between members of her family. Sunnie: your teenage daughters need you, too. Maybe more-so at their age: been there, done that, too! There may come a time, and I hope you will recognize it, when the sacrifices you make are taking a toll on your health and the relationship you have with your daughters. Placing your husband in a Nursing Home isn't a failure on your part. I thought it was on mine, but I was wrong. She's getting MUCH better care there, her vital signs are being monitored, she has a doctor there every day, she has other people to watch and try to communicate with, and she has more stimulation. Sunnie: our visits are so much more loving now that the mundane duties are performed by others. I take her for walks...visit and help her with lunch...it's so much better for both of us. Thank heavens she can't fully comprehend where she is, all she knows is that everyone is so nice to her, they work so hard, and are still so friendly.

Sorry I've rambled on here, but I just want you to know that I just went through what you're going thru now, and made a decision I should have made sooner. She's in a warm, loving, safe place, and my DH and I are enjoying our time together at home.

Visit often...
Blessings
Linda


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RE: hello all

Hi all,

First, this forum is great. My wife cares for my mom who lives with us. She is 67 with Parkinson's and plenty of panic attacks and worrying. She has shown signs of sundowners syndrome as well.

Regarding the guns, don't lock them up, get rid of them! This is an article from our local paper. This occurred two nights ago! From the Sun-Sentinel Paper (Ft. Lauderdale)

Cooper City family left to ponder why man shot girl, 14

By Georgia East and
Danny Sanchez Staff Writers
Posted June 17 2005


COOPER CITY In the two months since Hans Bechtold moved in with his daughter, he had played an active role in the family even as he dealt with his own illness.

He taught his grandson to drive and the family often went out to dinner together. Close friends thought Bechtold, 74, had settled in after the move from his Miramar home.

On Thursday, family, friends and neighbors were left wondering what led him to shoot his 14-year-old granddaughter Wednesday night before killing himself.

"What happened last night was not the man we know," said Deborah Whitehead, a friend of Bechtold's daughter, Diane Riley, and her husband Guy Riley. "He's very loving, very kind, very neighborly."

About 7:45 p.m. Wednesday, Bechtold shot Nicole Riley as she talked on the phone with her boyfriend, said Hugh Graf, a spokesman for the Broward Sheriff's Office. The two were home alone at the time.

Josh Chuven, who lives directly across the street from the Rileys, said he saw Nicole run out of the house, followed by her grandfather, who still had the gun.

"If I didn't yell and she didn't duck, that would have been it," Chuven said.

Nicole continued to run as her grandfather fired the gun, said Graf and neighbors.

The teen was flown to Memorial Regional Hospital in Hollywood, where she remained in critical condition Thursday evening, hospital officials said.

After the shooting, Bechtold barricaded himself in the house as deputies and neighbors tried to contact him.

Close to midnight, the Sheriff's Office SWAT team entered the house and found Bechtold motionless on the floor with a self-inflicted gunshot wound, Graf said.

"It's pretty clear-cut," Graf said. "We have the who, the what, the when and the how. There's just the why to answer. That's the big part of the focus."

The Rileys are a well-known family in their Cooper City neighborhood. Diane Riley works as a secretary at Cooper City Elementary School. Their son, Brian, attends Cooper City High School, where Nicole is supposed to begin classes in August. She attended nearby Pioneer Middle School, neighbors said.

Friends said Bechtold was battling leukemia and had lost his wife to diabetes about a year ago. Recently, the Riley family built an addition to their house to accommodate Bechtold.

Neighbor Charley Fazio said he had seen no signs of trouble.

"He's been sick, so he has good days and bad days," Fazio said. "They've been living next door to me for about 15 years. Other than them yelling at the kids, I never heard no real arguments or anything."

Fazio said he saw Bechtold earlier on Wednesday and the two said hello.

No one answered the phone at the Riley's home on Thursday. Plywood covered the windows of the house, which earlier in the day neighbors helped clean up, said Chuven.

"This is the perfect neighborhood," he said. "We're all one big family."

For now, the focus is on helping Nicole get well. As of Thursday afternoon, she didn't know her grandfather had killed himself, said Whitehead, the family friend.


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