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Gerry
Joined: Sun Oct 21, 2007 4:18 pm Posts: 835 Location: Acton, MA
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Frank said he wanted to see a lawyer, wants to make sure HE has controll of our money, then he may get a divorce. He thinks I run around and doesn't always trust that the "girl" he's with is his wife. He thinks I hired two other girls, that look just like me, to do all the work. I do enjoy his raving about how hard the other two work and occasionally wants to buy them a gift to say thankyou. He's always reaching into the air and goes to the trash to throw something away, never has anything in his hand. I do get weary with the constant mistrust and antics but my girls and sister are always there to listen and we do have a few good laughs. I don't know what I'd do without my family and this forum to vent to.
Take care, Gerry
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| Sun Jul 26, 2009 10:26 am |
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irene selak
Joined: Sat Jan 03, 2009 2:59 pm Posts: 1950
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Gerry,
Yes it does get on your nerves but the best you can do with it is to have a good time with it, can't take what he says to heart, he is not the same person and is not in control of what he thinks sadly!
_________________ Some forum members may be intense in sharing what they have found to be useful/recommend certain resources.While meaning well, some comments may seem rather strong. Please contact me with any concerns. Irene Selak LBDA Forum Moderator http://www.lbda.org
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| Sun Jul 26, 2009 10:29 am |
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george44
Joined: Sat Aug 08, 2009 12:34 pm Posts: 1 Location: Bay St Louis,MS
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 new to group
My husband was diagnoised with LB 2 years ago but 5 year ago he was diagnoised with Alzeimers. I have been reading this post for a few weeks. Really helps to share others experience. He sleep most days 16 to 18 hours with just bathroom breaks. He has become very weak and near falls. Parkinston signs have set in for the past month. Bad dreams and hallucinations happen often. Physcial heath is overall good. Just starting the low blood pressure from time to time. Does everyone check the pressure daily? Thank God I have long term care insurance and do hire sitters. Most the time he is totally aware but has trouble holding conversation, can't get out what he wants to say. I have read a life expectant of this desease is 5 to 7 years. What do they die of since it seems physcial heath is good? Seems I get more confused each day dealing with this. He only takes 24 mg of Razadyne daily. I hope we can prevent excessive drugs. He is most pleasant not aggresive at all. He cries and hates that he ties me down. Such a good man. Good luck to all of you and thanks for listening to me.
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| Sun Aug 09, 2009 11:37 pm |
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robin
Joined: Fri Aug 11, 2006 1:46 pm Posts: 4811 Location: SF Bay Area (Northern CA)
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George44,
Many die of pneumonia. Many lose the ability to swallow, choose not to get a feeding tube, and die. Many die of unrelated things (eg, heart attack, stroke).
Robin
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| Sun Aug 09, 2009 11:43 pm |
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Molly
Joined: Mon Sep 07, 2009 11:30 pm Posts: 6 Location: Pittsburgh
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I am new to this forum and it is amazing to read about exactly what is happening with my husband's father. Most of the time he can barely stand without help, but when he is having a "busy" day, he can jump out of his chair and wheel his walker like a bullet. The Parkinson aspect has severely impeded his fine motor skills so he can not even turn the pages of a magazine. One thing we have found to "amuse" him is to give him a basket of socks that we purposely mix up and ask him if he could please help us sort, fold and match them. Since he usually doses off a few times this activity can at least give us about 45 minutes of "down" time where he has a job to do!
We are always looking for ways to keep him busy but seated and safe....
Molly
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| Wed Sep 09, 2009 11:15 pm |
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irene selak
Joined: Sat Jan 03, 2009 2:59 pm Posts: 1950
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George44,
Welcome and I am sorry for your need to be here.My husband passed 4 yrs ago and he aspirated pnemonia and thats what took him in the end, that was the fifth time he had it in that last yr and came through the other four but his body was so weakened at that point! There is nothing set in stone about the 5-7 yrs thats just a general, so go much sooner others last longer , it really depend on other halt factors too!
Good Luck!
_________________ Some forum members may be intense in sharing what they have found to be useful/recommend certain resources.While meaning well, some comments may seem rather strong. Please contact me with any concerns. Irene Selak LBDA Forum Moderator http://www.lbda.org
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| Thu Sep 10, 2009 8:06 am |
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irene selak
Joined: Sat Jan 03, 2009 2:59 pm Posts: 1950
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Molly,
One of the jobs that I gave out was coupon cutting, I had safety scissors and it sometimes took him hours and also putting away the silverware, I would lift the carrier from the dishwasher and put it on the table, also took the holder from the draw and it would sit there a long time and I always let him know how much he was helping me by doing those jobs and he was only too happy to do them.
Oh and Welcome to the forums!
_________________ Some forum members may be intense in sharing what they have found to be useful/recommend certain resources.While meaning well, some comments may seem rather strong. Please contact me with any concerns. Irene Selak LBDA Forum Moderator http://www.lbda.org
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| Thu Sep 10, 2009 8:10 am |
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nsalvadore
Joined: Thu Aug 30, 2007 6:15 pm Posts: 231 Location: Charlotte, NC
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Irene, I have a question. I believe Tony is likely aspirating. The speech therapist has him on thickened liquids but he still coughs, even when eating and falling asleep. How fast does pneumonia come on in a case of aspiration and how will I know it is happening? Does a fever acompany it? He has a health care power of attorney which even excludes antibiotics in a case of dimentia. From what I understand even if aspirational pneumonia is cleared up, it will come back again and again as the underlying cause of it, dysphagia, does not go away.
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| Thu Sep 10, 2009 8:58 am |
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irene selak
Joined: Sat Jan 03, 2009 2:59 pm Posts: 1950
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Nancy,
Yes aspiration does/can cause pnemonia and it does come on very fast or should I say at least it did for us we had it 5 x's in the last 8 months, you know because they react like they do with any infection, atibotics were not excluded for us because I believe that is comfort.
_________________ Some forum members may be intense in sharing what they have found to be useful/recommend certain resources.While meaning well, some comments may seem rather strong. Please contact me with any concerns. Irene Selak LBDA Forum Moderator http://www.lbda.org
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| Thu Sep 10, 2009 10:13 am |
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nsalvadore
Joined: Thu Aug 30, 2007 6:15 pm Posts: 231 Location: Charlotte, NC
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Irene...thanks for the reply. I would have to go against Tony's healthcare advance directives if I give him antibiotics for pneumonia. So sad. His mother had alzheimers and hung on and hung on. Guess this first hand knowledge played some role in his decisions. Will be hard for me to withhold them, but so is watching the stage he is on...this is a no win for me. Tony is only 68 years old, a past marathon runner, etc.
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| Thu Sep 10, 2009 11:52 am |
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irene selak
Joined: Sat Jan 03, 2009 2:59 pm Posts: 1950
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I know it is hard to watch, but if is the way his was set up I guess you need to do what he wanted, I came close in the very end of my husband's life, I was going to do a feeding tube, thinking I could save him, thankfully my daughter pulled me to my senses and told me this is what Jim didn't want and I had to let go and actually it was within days prior to his passing it probably wouldn't have helped him, in fact it might have ended his life a few days sooner. I live with the fact I did the very best I could for him while he was on this earth and I guess thats the best we can ask for!
_________________ Some forum members may be intense in sharing what they have found to be useful/recommend certain resources.While meaning well, some comments may seem rather strong. Please contact me with any concerns. Irene Selak LBDA Forum Moderator http://www.lbda.org
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| Thu Sep 10, 2009 1:37 pm |
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dorthea
Joined: Sat Oct 06, 2007 4:28 pm Posts: 670 Location: LA
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 Thanks, Irene
Irene, my daughters keep me grounded. They let me alone to a certain point and then they say, "Mother, you've done all you can". Without their watchful eyes, I would need to talk to myself for the truth... which I do a lot anyway.
DrP
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| Thu Sep 10, 2009 1:50 pm |
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Dee
Joined: Sat Jan 31, 2009 7:21 pm Posts: 172 Location: Ohio
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For anyone interested: many years ago, Pope Pius IX (I think?) came out with an encyclical saying that when someone is close to death it was ok to not do anything extraordinary to preserve/extend life. This included medication & oxygen. It was expected that comfort would be all that need be provided. I apologize for paraphrasing here, but that was the jist it. My heart goes out to those of you facing these situations. Blessings to you all. Dee
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| Thu Sep 10, 2009 3:52 pm |
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BevSmith
Joined: Sat Sep 05, 2009 2:58 pm Posts: 56 Location: Long Island, New York
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I guess that is our biggest challenge, then...realizing we are doing all we can - but that there comes a time when we can do no more - and not feel guilty about it. :hug smiley:
I feel fortunate that Dad is in otherwise perfect health. I need to ask Steve if Dad has his wishes in writing....thank you for the reminder.
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| Fri Sep 11, 2009 3:03 am |
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nsalvadore
Joined: Thu Aug 30, 2007 6:15 pm Posts: 231 Location: Charlotte, NC
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Tony's advance directive was written in 1996, before I even knew him. His first wife died, diabetic, amputations, etc. and he had promised her, no tubes! The hospital inserted one and he was very upset by this. All this info comes to me from his sons. After we were married in 2002 we had many conversations about him not wanting to live if he became dimented, "save a bullet for me" is what he told his sons. So actually, I have no choice as I do know what his wishes are. Just so hard to sit there and listen to him cough and gurgle, knowing what is coming. I do have Hospice on board and they are a great help. He is leaning very badly now and hard to walk so I am looking at a wheelchair, knowing that will bring its own set of problems, but do not want to deal with the pain of a broken hip.
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| Fri Sep 11, 2009 9:48 am |
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