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 Dad's huge decline 
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Joined: Thu Apr 21, 2011 9:07 pm
Posts: 247
Post Re: Dad's huge decline
Ger, my heart goes out to you and your dad! No one should have to suffer so much pain, especially when in the hospital, supposedly with experts all around.
I wonder if you might want to try to find a palliative care or pain management specialist, as well as a neurologist, as Robin suggested?

I found an excellent article in J Clin Nursing on factors that influence provision of good end-of-life care in acute and long-term settings in Ireland. The authors were: Authors: Dympna Casey, BA, MA, RGN, Senior Lecturer, School of Nursing & Midwifery, National University of Ireland; Kathy Murphy, MSc, BA, PhD, RGN, RNT, Professor and Head, School of Nursing & Midwifery, National University of Ireland; Aine Ni Leime, BA, MA in Economics, Researcher, Irish Centre for Social Gerontology, National University of Ireland; Philip Larkin, RGN, RSCN, BSc, MSc, PhD, RHV, RNT, Professor of Clinical Nursing (Palliative Care), School of Nursing, Midwifery and Health Systems, University College Dublin and Our Lady's Hospice and Care Services, Harold's Cross, Dublin, Ireland; Sheila Payne, PhD, RN, CPsychol Help the Hospices Chair in Hospice Studies, International Observatory on End of Life Care and Professor, Institute for Health Research, Lancaster University; Katherine A Froggatt, BSc, PhD, RGN, International Observatory on End of Life Care, Lancaster University, Lancaster, UK; Eamon O'Shea, MA, MSc, PhD, Professor and Director, Irish Centre for Social Gerontology, National University of Ireland, Galway, Ireland. I don't know where your dad is, or whether any of these people might know someone with expertise in palliative care. I work with a few of these folks and they are probably much better than the neurologists about managing pain, knowing how to juggle complex sets of meds to do so, and knowing how to recognize when someone is suffering even if the person cannot or will not say so.

Good luck! Your dad is so lucky to have you there to watch over him and to negotiate his care with the hospital staff...
Laurel

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Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.


Sun Jul 24, 2011 6:19 pm
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: Dad's huge decline
To all of you, a heartfelt thank you for all of your advice and support. Laurel, Robin how wonderful are you to look up specific Irish experts who may help my Dad. I feel so priveliged to know you and yes, to call you my friends. It is a very difficult road we travel with this disease, but they say every cloud has a silver lining, and all you guys are definitely the silver lining in all this.
I have made enquiries about palliative care, but unless there is a definite diagnosis of terminal cancer, we are not entitled to any nursing or palliative care. I will do my utmost to make sure Dad is comfortable and pain free, even if it means calling his regular doctor every single hour of every day, annoying him as I have done in that awful hospital. I have taken names of the offending nurses (also of the few wonderful nurses who couldn't do enough for Dad) and will take this further when the time is right. God Bless you all,
Ger xxx

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


Sun Jul 24, 2011 7:09 pm
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Joined: Thu Apr 21, 2011 9:07 pm
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Post Re: Dad's huge decline
Hi Ger,
We are all so lucky to have each other, and I feel lucky to have your example and stories and advice!
It is appalling that they would provide palliative care only for terminal cancer. People do die of other causes, and people need palliative care for other reasons, too. Maybe a pain management specialist? Though it sounds as if much of his pain may be secondary to either physical decline or side effects of the antibiotics.

Makes me realize also how very lucky I am that I know pretty much all the doctors my mom would need, or know someone who knows them. The only challenge is that every new specialist winds up asking me to mentor their new fellow or junior faculty person. More time (and they have tracked me down even in the waiting room when my mom was having surgery!). On the other hand, if she or my dad needs anything, they get immediate attention and first-rate care and great kindness. And I make sure they are all working closely with the primary care doc, who is also super. Wish I knew someone where you are... closest connection I have is the director of our Cancer Center, who is from Dublin and trained there and still has ties and family. (And my husband's mom's family in Galway, but they are not medical.)

Meanwhile, you are a hero to do all you are doing. Rest and don't fret, and I will, as Friends say, hold you and your dad in the Light.
Laurel

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Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.


Mon Jul 25, 2011 1:39 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3359
Location: Vermont
Post Re: Dad's huge decline
Ger - my heart goes out to you. I had some similar issues when my dad was in the hospital 2 yr. ago, then a SNF, then the ALF. There were some great CGs & medical people, and then there were some that were awful. My dad was reluctant, like yours, to ask for things or complain, but he'd tell me because he knew and trusted me. Don't these people understand that? Surely, there are lots of people who feel and behave like this until they get to know and trust the people taking care of them. Then the family gets blamed for being "troublemakers" because we are listening and trying to advocate for our LO! I remember feeling like I was going to explode sometimes too! I hope you get to the right people and they can get things to change for the better for you. Lynn

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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.


Mon Jul 25, 2011 12:47 pm
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Joined: Fri Dec 31, 2010 3:07 pm
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Location: Minnesota
Post Re: Dad's huge decline
LTCVT wrote:
Don't these people understand that? Lynn


No. Sadly, there are many in the caring professions who come in contact with dementia as part of their worklife who have NO CLUE how to deal appropriately with dementia. And I don't just mean undertrained aids.

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


Mon Jul 25, 2011 1:49 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: Dad's huge decline
Lynn, that is exactly how my mother behaved for well over a year after she went into the SNF. She would complain only to me and I would have to take up her complaints with the nurses, who totally understood. I didn't have any problems with them at all. Now, after another six months, my mother finally feels comfortable enough with the staff to speak with them directly about her complaints. They deal with dementia every day and are 100% understanding of it, and I mean the aides as well.

Julianne


Mon Jul 25, 2011 2:00 pm
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Joined: Tue Feb 23, 2010 10:32 am
Posts: 215
Location: Kalispell, MT
Post Re: Dad's huge decline
Ger:

Don't know how it's done in Ireland, but here if some federal agency creates a problem, you call your Congressional representative. They contact the agency, who doesn't want to PO a Congressman and the problem is often easily resolved. They even have an unofficial term for it, "a Congressional." The Congressman, of course, has been able to help a constituent who hopefully will vote for him/her next election.


Mon Jul 25, 2011 2:11 pm
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: Dad's huge decline
Hopefully Dad will be home tomorrow or the day after - we are just waiting for his oxygen tank to be delivered. I have taken names of the offending people and intend to send a complaint the hospital administrator. I will also commend the beautiful ladies who did listen to us and helped my Dad, so that they will see that I'm not complaining because I am awkward, but that I had legitimate reasons to be upset. Thanks so much for all your support and advice,
Ger xx

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


Mon Jul 25, 2011 2:49 pm
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Joined: Sat Jan 03, 2009 2:59 pm
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Post Re: Dad's huge decline
Ger,
Good Luck with bring your Dad home, I hope it goes off without a hitch !

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Irene Selak


Tue Jul 26, 2011 8:30 pm
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Joined: Mon Feb 21, 2011 9:55 pm
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Post Re: Dad's huge decline
Irene, unfortunately there were too many hitches. I am so ready to bail out of this country. Poor Dad was left sitting in a wheelchair for 2 hours - he is so weak this almost killed him - literally. They couldn't wait for the ambulance to get him out of his bed. :evil: THEN they arrived in to inform us that we would have to get a wheelchair taxi to take Dad home as there were no ambulances available. :evil: :evil: This was almost too much for him, but he is such a darling and a fighter that he said 'ok. lets do this and get out of here!!!' So we did - it was tormenting to watch him having to ride sitting up in the chair when all he wanted to do was to lie down. My 2 sisters and I then had to transfer him from the taxi to bed - no mean feat - but we got him there - and boy was he glad to be home. Yesterday, we discovered he had a nasty kidney infection - his catheter bag was full of blood. His regular doctor was so good, called up, checked the catheter, gave him an antibiotic, and the strong pain relief. Dad seems to have settled a bit for now, but every day brings a new challenge. I am so mad at the government here that they can abandon the people who worked so hard all their lives, and just leave them without a shred of dignity. I won't get on my soapbox now, because if I do I will never get off. The silver lining in all this is that Dad is relatively pain-free right now, and thats all that counts. Thanks for listening
Ger xx

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


Fri Jul 29, 2011 8:28 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Dad's huge decline
Wow Ger, I can't imagine that they actually let him out of the hospital with a kidney infection. That alone is inexcusable. I'm so sorry for what you are dealing with in addition to his health issues. Do you have assisted living places there that he could move into? Lynn

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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.


Fri Jul 29, 2011 8:33 pm
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: Dad's huge decline
I know Lynn, we are tearing our hair out. We (all my siblings) are having a big meeting with all the health care providers on Wednesday next - the earliest I could get. (It is a bank holiday weekend here this weekend). We are going to decide where we can place Dad to get the best possible care available for him at this time. It is heart-breaking, but we are doing our best - it just feels like our best isn't enough any more.

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


Fri Jul 29, 2011 8:43 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3359
Location: Vermont
Post Re: Dad's huge decline
Ger - it will never feel like you are doing enough. That's just how it is with empathic caregivers. It sounds like you are definitely doing all you can do, and that's all you can do! What we need is a miracle, but that's not reality unfortunately. Please take care of yourself during this particularly stressful time. Lynn

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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.


Fri Jul 29, 2011 8:57 pm
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Joined: Wed Mar 02, 2011 1:04 pm
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Post Re: Dad's huge decline
Thinking of you Ger......

Best wishes always,

Tonya

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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........


Fri Jul 29, 2011 9:55 pm
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: Dad's huge decline
I have noticed lately, but more so since Dad has come home from hosptal, Dad complaining with his left leg and foot. After his stroke 5 years ago, all his left side was affected. His left hand has turned into a claw, and is useless. But I have noticed that his left foot has become really deformed. It is like the muscles are tightening up, and his foot is curling inward. His instep is now extremely high and his toes are curling right in under his foot. I am sure this is what is causing all the pain. Do any of you have any advice on what I can do to help alleviate the pain, or make it easier in some way for him. I tried massaging it for him a few times but it is too painful. Is there some kind of medication I can give him, or is there even a name I can put on this to tell the doctor about it so that he can prescribe something.

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


Sun Jul 31, 2011 12:52 pm
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