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 Dad's huge decline 
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Dad's huge decline
I can suggest a few things, Ger, but they may not be available to you. One, a good orthopedic specialist to determine the cause and severity of the contracture; two, a good physical therapist who can supply corrective appliances to alleviate the problem. If you find number one, he/she will probably order the services of number two. Hope your poor father gets some relief!

In the winter of 2008-2009, Derek went through a series of life-threatening illnesses unrelated to Lewy [although he was well into Lewy at the time] and we also endured some medical nightmares of incompetency but also a few [very few] examples of excellent diagnosis and treatment. You really just have to keep nagging and raising a bit of hell to get the care your LO deserves. I feel for you, your father and your whole family. God keep you safe and strong.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sun Jul 31, 2011 2:09 pm
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Joined: Wed Mar 02, 2011 1:04 pm
Posts: 251
Post Re: Dad's huge decline
Ger,
So sorry to hear about your Dad's foot...this sounds like what they told me the parkinson's would get to be like eventually.....I agree with the others about an orthopedic specialist or physical therapist who doesn't just know something about parkinson's but is an expert...so sorry for his pain.....Am really thinking of him, you and your family.....

Best,

Tonya

_________________
First symptoms in 2000 at 35 yrs old. LBD early onset dx 2-17-2011 at age 46.

' "I try not to worry about the future, but rather to "wonder"....and "wonder" is one step away from "awe" '......From a wise friend........


Sun Jul 31, 2011 7:05 pm
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: Dad's huge decline
thank you for your advice and kind words of comfort. My problem is that to take Dad anywhere at this stage is a major undertaking - physically he is very weak and moving him makes him very breathless and uncomfortable. The trip home from the hospital took so much out of him. I will try to get an orthopaedic specialist to call to the house - but I won't hold my breath.

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cared for Dad who passed away on January 28th 2013 R.I.P.


Sun Jul 31, 2011 7:23 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Dad's huge decline
Ger,
You might have a better chance at getting a massage therapist to come to the home than an Ortho, they could show the family the pressure point to relax the foot and hand and it is something that has to be done often but it does help !

Good Luck and let us kn ow what happens in trying to reach someone !

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Irene Selak


Tue Aug 02, 2011 8:47 am
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Joined: Tue Jul 05, 2011 11:06 pm
Posts: 49
Post Re: Dad's huge decline
I have just been reading this thread and my heart is breaking for you and your father. I can't think of a thing to say other than God bless and you both are in my prayers. Big hugs!


Tue Aug 02, 2011 4:01 pm
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Joined: Tue Mar 29, 2011 3:09 pm
Posts: 20
Post Re: Dad's huge decline
Hi Ger,
About 3 years ago I had a client with PD who would get terrible cramps in his feet and toes. They were excrutiating. Because he was totally confined to his bed at the time, his Dr. prescribed a quick dissolving form of morphine that we could put under his tongue that took effect right away. We then could massage his feet until they were relaxed and no longer curled up. Pain free at least for a time.
I don't know if this would be a possibility for you or not, but maybe something your dad's Dr. would consider.
Love and prayers to you,
Marilyn


Wed Aug 03, 2011 2:30 am
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: Dad's huge decline
Thank you all so much. Marilyn, for some reason in this country, the medical profession is extremely reluctant to prescribe any kind of morphine. Thank God Dad's regular doctor prescrobed oxycotin for Dad - this is a form of morphine and has made a difference, but we are now waiting for his doctor again, as his breathing is very erratic again, he is blue around the mouth, and he has terrible pains in his stomach. Despite all my efforts yesterday and today, and believe me I tried EVERYTHING!!! I could not get his bowels to move. I think he is headed for the hospital again. I will keep you all updated. Thanks again

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cared for Dad who passed away on January 28th 2013 R.I.P.


Wed Aug 03, 2011 9:52 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Dad's huge decline
Ger, you and your father are in my prayers this morning. I do hope some relief is on the way! God bless!

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Wed Aug 03, 2011 10:04 am
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Dad's huge decline
prayers

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Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years


Wed Aug 03, 2011 10:35 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Dad's huge decline
Ger,
Keeping your Dad in my thoughts, please do keep us updated as we all care !

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Irene Selak


Wed Aug 03, 2011 10:59 am
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Joined: Mon Feb 14, 2011 10:22 pm
Posts: 190
Location: Portland, Or
Post Re: Dad's huge decline
Ger- your situation just breaks my heart, love and prayers to you and your dad!
Ellen

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Ellen 59, caregiver for mom Marion 81,dx LBD Feb 2011


Wed Aug 03, 2011 11:07 am
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Joined: Wed Mar 02, 2011 1:04 pm
Posts: 251
Post Re: Dad's huge decline
Ger - Thinking of you, your Dad and your family....so sorry for all you are going through....I really do care about you - you are so sweet and you have given me so much hope in the way you care for your dear Father (your example and those of all here comfort me in reassuring me there will be someone there for me when the time comes)....and I hope I can be a fraction of the daughter to my Dad as you are to yours...as my Dad enters PDD.....

All my best wishes,

Tonya

_________________
First symptoms in 2000 at 35 yrs old. LBD early onset dx 2-17-2011 at age 46.

' "I try not to worry about the future, but rather to "wonder"....and "wonder" is one step away from "awe" '......From a wise friend........


Wed Aug 03, 2011 6:10 pm
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: Dad's huge decline
Hi, an update on Dad. We have had an horrific few weeks. After only a week at home, we had to take Dad back to hospital. He had terrible pain in his stomach and I couldn't bear to watch him suffer. I insisted on his being transported to a hospital further away, because I would not allow him back to that awful place he had just left. His catheter had blocked up - they told me the other hospital had put in a female catheter - way too small for Dad, and that was how he got the UTI. He had a temp of over 104 degrees (over 40.4 here) in the ambulance, and became extremely ill so very quickly we were shocked. The doctors in this hopital were amazing, and made him comfortable immediately, giving him proper pain relief and getting the temp down. He had pneumonia. We as a family had several arguments, as I wanted to let the pneumonia take Dad, but the others wanted him treated, so they won - he was given more intraveinous antibiotics. We don't do medical directives in our family - Dad never said anything and always avoided it, but is terrified of dying. He was extremely agitated, was shouting at everyone, very restless in the bed and kept kicking off the bedclothes. He knew none of us, and was hallucinating severely. Eventually Dad became so ill - unconcious - the doctor said to let nature take its course, so they removed the iv lines and left him in peace. Lo and behold, Dad did his Lazarus trick again, and after being annointed on Thursday 11th August, he is now almost like himself again - sitting up talking and eating. Yet again the medical staff are amazed at him. I wasn't as pleased with him today as he had a temp again - not as bad as before, but definitely not as good as he has been the last few days. We will just have to wait and see. I'll keep ye updated, thanks for listening,
Ger x

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cared for Dad who passed away on January 28th 2013 R.I.P.


Sun Aug 21, 2011 2:46 pm
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Joined: Mon Feb 14, 2011 10:22 pm
Posts: 190
Location: Portland, Or
Post Re: Dad's huge decline
Ger- so glad to hear that your father's better. I think of you often and was glad to hear the update. I'm so glad that my mom and i have had the advance directive talk and I know exactly what her wishes are, even though I know it's going to be hard to follow through and I'm sure that some of the seven sibs I have still living will be unhappy with me. My mom had wanted to be DNR many years ago and when she had her heart attack 8 years ago I talked her into having by-pass surgery, told herhow much better she was going to feel, etc... well, in her case, life didn't get better and I've always felt guilty about it, as much as I'm thrilled to have been able to keep her around for the past 8 years. I know that she's not enjoying life anymore and when the time comes, I will be proud to advocate for her. My dad died when all of us kids were in our twenties ( of lung cancer in 1979) and as hard as that was, I know that her death is going to really split our family apart, which is a long story that I won't go into. Mostly just wanted to tell you that I care. 8)
Ellen

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Ellen 59, caregiver for mom Marion 81,dx LBD Feb 2011


Sun Aug 21, 2011 3:23 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Dad's huge decline
Ger, I'm so glad to hear your father is getting his pain issue resolved and sorry it wasn't picked up sooner. Sometimes it's so hard to know when an intervention will do good or will do more harm than good. Hugs and prayers.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sun Aug 21, 2011 3:57 pm
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