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Parkinson's Disease
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Posted 1/29/2012 11:35 AM (GMT 0)
I just thought i would post about my lovely father, he has had parkinsons disease for 8 years now, started with sinamet and now taking 150mg of stalova. He was rushed to hospital yesterday with bleeding (vomiting blood) he hasn't been eating and drinking for about 6 weeks or so now and he has lost about 4 stones, he is just skin and bones, he has been bed ridden since 8 weeks, really gone down hill, decision was taken 3 weeks ago to put him in a nursing home, this i found very painful to do... just he needs 24 hour care... he is in a nappy, bed ridden, has a catheter bag, has been vomiting and he had asphyxional pneumonia on xmas eve... he overcame this because they gave him antibiotics, but he was taken to hospital yesterday and i found him in a terrable state, he had a drip bag (underneath the sheets - and blood was filling in the tube as it was backtracking) i told the nurse and she came and said well he shouldnt have the bag anyway!!) oh i am so mad - i phoned up the hospital made a complaint and the registrar phoned me back up and said well antibiotics are no good for you father no more, we feel it would be best just to leave him... i am apauled at their behaviour, he was sent back home to his care home at 9PM AT NIGHT!!! IT was 2 degrees outside and very cold!! I want to make an official complaint but not sure how abouts i go to do this!
Anyway parkinsons is robbing my father of his body and mind... but having to watch him every other day just getting worse and worse is killing me slowly, i have a young family of kids and i am having trouble even doing the most simplest of tasks, i am just waiting for that final phonecall that i am dreading :(
Anyway just thought it would help me to share x
Posted 1/31/2012 5:43 AM (GMT 0)
It certainly sounds like your Father has been fortunate to have you in his life. There comes a time when  it's about quality of life and knowing that there is a place where we will be free of these challenges.  My thoughts are with you and your family.

 

lizzy4451

Posted 1/31/2012 9:19 AM (GMT 0)
Our family GP went to see him yesterday and he is dying, i am torn part and heartbroken....... they are starting the care pathway for him this morning where he will have a syringe driver with hyoscine to dry the mucus in his lungs up, midazolam and also cyclezine (sp) for nausea also maybe a bit of diazepam but that will be in a few days just depends on how long he will last for... i just want to know one thing.... HOW DO I STAY STRONG? i have a special needs child who is 12 and 2 other kids.... x
Posted 2/1/2012 6:44 AM (GMT 0)
Daddyswelshgirl,

How do you stay strong?  By knowing there is a better place. A place where your Father is free from pain, from the things that have robbed him of his dignity, from the challenges he faces everyday. When the time comes, let him go ... and know that he will be smiling back at you ... that he is free.

 

lizzy4451

Posted 2/2/2012 10:03 PM (GMT 0)
I had to write after reading so many heart felt messages about loved ones with this terrible disease.  My Mum has had Parkinsons for almost 10 years and we have been asking recently, just how bad will things get? She lives with my Father, her carer, who cares for her well and with love but he is not young and looses heart and strength.  He has no life beyond caring for my mother, I'm sure this will echo with many of you.
Mum has 2 carers 4 times a day who get her out of bed each morning and to bed each afternoon, in between they call in to change her pads and sort out toileting.
She hallucinates frequently,seeing people in the house and gets Dad to pass biscuits around to non existing visitors and recently believes she is being poisoned.  We speak to her and tell her this is not right, she understands and just gets confuses.  She eats very little and finds it difficult to swallow, feels constantly hot but is cold to the touch and she is wracked with pain.  She sleeps almost all day and shouts out for my Dad during the night.  What is distressing is she knows what is happening to her, she used to manage a care home, and she is frightened.
I will not agree to a peg, one of her only pleasures now is taste, and I find myself wishing she was gone, that her pain and distress will end and the shell of my once beautiful mother who would have walked over hot coals for her family will pass away.
I live in a different county and visit both days at the weekend, leaving my own family to do so and call her every night to sing songs with her in an attempt to distract her for 10 minutes from her living hell, finishing the call when she can't hold the telephone any longer.
It's sad, but I now don't think of my Mum the way she was, her Grandson doesn't remember the days she ran along the beach with him and how we sat in the garden having bbq's but I hope one day we will again.
I do not know how long this will go on for, we are reluctant to look for a care home, an acknowledgement of failure! or an inevitable consequence of this illness.
What I do know from reading every entry on this forum is i'm not alone, others hurt and care too and this illness is very very cruel.
Posted 2/7/2012 1:24 AM (GMT 0)
Hi Daddyswelshgirl, you don't say where you are but from your naame and the term GP I assume you are in the UK as I am. I have PD but may be able to help you through the proper hospital complaints procedure as I was once a hospital discharge manager for Age Concern. If you emailo me I can start you down the road and give ou guidance and help if you need it. From what you say the hospital have not opened a complaints file on your father just fobbed you off. You can eventually go to the Health Ombudsman but first you must exhaust the inernaal hospital complaints procdure. Look under the bear in members and you will find my address. I hope this is helpful.
regards
The Bear
Posted 2/7/2012 1:39 AM (GMT 0)
Thanks Bear.Ed
Posted 7/9/2012 4:04 PM (GMT 0)
JRC
I am new to this site. The stories are so touching and so familiar to mine. I am long distance from my 87 yr. old father. He has to be in the last stages although no dr. has said so. I just spent 3 wks with my mom, trying to help and set up care. She is 85 and I can see it taking a tole on her. He hallucinates almost constantly. His sleep patterns are very irregular. Either sleeping all the time or not sleeping at all and talking constantly. He doesn't eat or drink much but still does some. That is about it. I don't know what to do next. I feel my mom will call 911 if he chokes bad or worse. But they have a living will and he has already had several episodes in the hospital and nursing homes. They are broke from bills and he is not even himself. She is keeping him comfortable. He still knows her but not many others. How do I get her into hospice when there is no life expectancy with PD.?
JRC
Posted 10/2/2012 1:16 PM (GMT 0)
My father has PD for over years and was admitted to hospital 9 days ago.  He kept falling over, would not eat/drink and had a very bad lung infection for a week or so coughing up copious amounts of orange-brown fluid.

He has lost much weight, sleeps for most of the day and has a nasogastric tube fitted to allow feeding directly into his stomach as well as a saline drip into his arm.  The hospital claim he has improved because the amount of fliud coming up from his lungs has decreased but we all think he has become worse.

He is currently too weak for a gastrotube to fitted directly into his stomach.

Whilst my sister is very optimistic about his ability to improve both my mother and I think the worst and given his current condition hope that the end is sooner rather than later.  No-one at the hospital has mentioned the further possibility of pneumonia, which I believe he has just had and was treated with anti-biotics (this was not confirmed by the hospital) and is distinct possibility going forward.

Why am I writing all this?  Simply because I am very stressed about his condition, cannot concentrate on my job at present and really wish the end would come soon to obviate a long lingering death with minimal quality of life.  Is it wrong to think like this?

Would be good to get some feedback if there is anyone out there who is or has been in a similar situation.

Thank you

Posted 10/7/2012 6:33 AM (GMT 0)
JFB,
What does your Dad want, Did Imiss that.Does he really want to be tube fed? Does he just want to be comfortable and go to sleep? Have you asked and told him its okay to go, would your sister agree to do that because one willing not to let aloved one leave could keep them alive much longer than they want to be.
We're these decisions ever discussed before end stage?
Posted 4/8/2013 9:39 AM (GMT 0)
Firstly,
I wish all of you a peaceful journey with the rest of your days with your beloved ones.
I am crying as I am writing this.

My dad is also getting worse although I have tried everything to slow down the process. He has a caretaker that takes him to the living room in the morning and back to bed in the evening. He recently started hallucinating.

I have very confused feelings myself, I know he is never going to be my same dad, we will never play backgammon together, laugh or sing Italian songs or even watch soccer on TV together. He was a very sweet man, with a sense of great humour, great deal of intellectuality, knowing 4 different languages etc.

I would like to know if there are any studies being made to cure this darn disease whether there is anything I can do to contribute to the studies...

It really hurts being unable to do anything but wait for the last call. (I live 20000km away from my Daddy) and try to visit twice a year)
God please help me cope with this.
Posted 5/14/2013 12:06 AM (GMT 0)
I am a new member. Our mother passed away Tuesday, May 7, 2013 at 9:08. She was surrounded by my brothers and sisters, my daughter, and niece. She was with us as we took our first breath, and we were with her as she took her last.

Although the moment that I saw her take her last breath was a relief for me, I find it very difficult to not think of her final few days and how she struggled. She lost 10 lbs in April as was only 101 lbs. Her frail body was skin and bones. I know that she is at peace, but it is very hard to cope with the pain she must've been going through in her final days.

My heart continues to ache for her.
Posted 7/1/2013 11:54 PM (GMT 0)
I hear you all, especially Tesspren. I lost my Mum on June 5 at 5:05pm due to respiratory failure from Pulmonary Edema. She got it becasue they geve her too much fluids despite my protests that she was swelling too much, while they were trying to treat her for hypercalcemia.Her PD made all her symptoms worse. She had recuperated from it and was ready to go home and told me what she wanted t eat (one of her few pleasures left) when we went home. Bu tthey kept giving her too mcuh fluids and she succumbed. Till the very end she fought to live by breathing harder when I asked her to, but her body was too compromised all the doctos failed and did not listen when i told the, to stop the fluids. I am completely devastated, I cant stop crying. she was so close to coming home. For over 20 years it was just me and her and our four , now two cats. My siblings could not care less and never called. I tried my best to fill the void they left. It was very hard to take care of her at the end becasue I did to know why she was suddenly getting worse when she had been doing so well despite her age of 91. She went from taking a shower everyday to two people having to help her do anything. i thought it was just her Pd getting worse, it never occured to me that she had something called hypercalcemia killing her. The doctors never told me about it although they had known about it since January of this year. It was when i demanded that she be admitted in hospital in early May, that i found out about it. even then they would not take the steps to treat her appropriately despite it being a treatable condition if treated properly immediatlely. .They just did not care because of her age. Even her PCP ignored my pleas for help. I feel like I failed her at the end. I cannot sleep at night, I miss her so much, her smiling at me first thing in the morning when I would go to wake her up. My cats keep looking for her and her wheelchair. It was a game for them to escort her around the house by walking beside her wheelchair and sitting beside her and having their meals when she had hers. Now they feel lost without her too. They say time makes it better, i just feel worse. I cant believe she is gone.
Posted 9/15/2013 8:26 PM (GMT 0)
Hi everyone I'm new this sight my husband has pd but it so hard to understand. One day he great next day he don't speak. Is this suppose to happen with pd..... He was diagnos 1 year ago but now he stumble when he talks he is on carplepo which has help him but his memory is also going away he can't remember from one day to the next.alzhimer runs in his family so the doctor put him on the exelon patch.... I am so happy I found your sight it has help reading everyone story. Now today he is in the room all day and has not said a word don't want to eat,talk nothing. So I just let him be.. Just neede to share and vent thank you
Posted 9/20/2013 4:41 AM (GMT 0)
Parkinson's diease symptoms and severity of symptoms and progession varies from person to person. Age is a factor too. How old is you husband? Also, in the earlier stages such as your hubby, doctors should also be looking out for symptoms that denote other types of parkinsonism such as Progressive suprenuclear palsy, other conditions that mimic parkinson's Disease such as Hydrocephaly. Your husband should be observed carefully if you are with him all day anda diary should be kept as to fluctuations in his condition through out the day as well as notifications as to time when meds were give, food and dink wee given. Managing PD is a juggling act. His doctor may need to order a CT scan to rule out hydrocephaly and stroke.
Posted 3/24/2014 3:26 PM (GMT 0)
I just joined last night and reading others postings my heart knows what all are going through watching a love one with this dreadful disease. I have cared for my husband the last five years and all I can do is cry these past months, and pray for God to give me strength. We will be married 58 yaars in may, he sleeps most of the time now and hardly awake, I searched for a site to help me deal with what all he is going through. I don't have time to get on line much. But looked for a site last night to see what I could gain in helping him at this time. He can only whisper and most of the time unable to do that I pray God give us each the strength we need.
Posted 4/9/2014 5:05 PM (GMT 0)
Prayingforacure,

I feel for you. I know all about crying everyday watching helplessly as your loved one deteriorates and what you do is not enough and wish you could do more but you are all zapped for energy. I wish I had more reassuring words, it is just such an insidious disease and very cruel in all ways. I also felt that I did not have the strength to go on one more day helping my mother and would sob in my room with only my kitties as my witnesses. But somehow the body is on a war footing as I say, and you just goes on.
Posted 5/19/2014 12:57 PM (GMT 0)
I really appreciate this forum and have turned to it a number of times trying to deal with Parkinson's in my mother. After 5 years (4 with a live in caregiver), now nearly at age 90 she is beginning to display the end stages behavior of sleeping all day. She has had a great deal of pain throughout these 5 years during "off periods" and off days, but would usually get a reprieve and have some normal hours or even a day. I remember her neurologist said "we would not be able to take care of her" at the end. But I think we can manage as long as we get relief for caregiver(s). I spend about 2 days a week caregiving for my mom when the live in caregiver gets time off. I am amazed when I read that other caregivers think it is an honor to caregive as your loved one becomes helpless. I am so sympathetic for what is happening with my mom but find it very difficult to provide that patient, attentive care she demands/requires. And then I read about other posts where the caregiver is taking time away from a young family to help the ailing parent. I think our society has to evaluate what we are doing when care for the elderly takes away care for the children. So while I hate this disease for taking away all my mother's dignity and ability to control her life - I am resentful of the toll on my life. That sounds very selfish - but like most family situations - most care falls upon me and not my other two siblings - because I am able (children all grown and single). Only the sophisticated knowledge of medicine and drugs allows us to maintain the elderly - and of course it has turned into a huge employment industry too. I can only imagine what will happen with the huge wave of baby boomers hits the assisted living stage. After watching my mother deteriorate and lose those independent qualities that make her so unique - I hope I have the "where with all" to end my life with dignity and not burden others. I am sure the "will to survive" will be the strongest force though - we will have to see. Many of my friends with loved ones in a digenerative disease situation swear they will never let this happen to them! Hopefully we will have some choices - and the fact that we have to helplessly watch loved ones wither away is a burden of our modern age. Sending lots of strength out to all others facing these issues!
Posted 8/6/2014 7:22 AM (GMT 0)
My dad has had Parkinson's for about 10 years now, the last 3 months he has deteriated rapidly and is currently in Respite while carers are put in place to help my Mum out. I feel heartbroken at seeing him as he is now and find it frustrating because health professionals don't seem to be upfront and honest with us, we don't know whether he is in the final stages of Parkinson's or not?! He now barely takes a couple of steps, is incontinent, hallucinates and if I'm honest looks like he wants to give up, how do you know if Parkinson's has reached the end stage? It is a very cruel disease, and one that I find very hard to understand no matter how much reading up I do about it.
My Dad now seems like a completely different person since Parkinson's took over his life, it can be very hard to watch someone you love so much go downhill so quickly. My thoughts go out to all of you on this forum xxx
Posted 8/26/2014 3:38 AM (GMT 0)
Linda Freeman,  thank you for that heartfelt and honest post.  My brother has PD, he is only 64 but from hat I am reading is probably nearing he end stages.  You are right in feeling so many different emotions. One wants  an easy solution or even some definite timeline but there are none.  There are so many good people here, so loving and kind.  God Bless you all.
Posted Today 11:19 PM (GMT 0)
I am new to all this but hopefully you all can help me. My husband was diagnosed with Parkinson's just over a year ago, is on a lot of meds and has recently developed a very stoic face and talks very little. I have no idea what stage he is in but he is 67 and his PD is the result of Agent Orange. I want to take care of him as long as I can but I have no idea what I can do to help. I read everything I can about PD but all I can seem to find are definitions, symptoms, treatment. Can anyone tell me what to expect?
Posted 11/30/2014 5:13 PM (GMT 0)
Is he a veteran, and is he receiving treatment through the VA? If so, ask to speak to a social worker or other representative about services they have for families and patients other than the pat on the head you get in the clinic.
Posted 12/8/2014 12:45 PM (GMT 0)
Delucain ... You mentioned the Parkinson's is a result of agent orange. My dad was in the Marine Corps for 38 years... Served in Korea and Vietnam... His Parkinson's is a result of agent orange .
The VA will help a lot if you reach out to them and
Stay persistant! My email is folan5 @ icloud.com . I can help you with this journey if you like. I live in Tx but my patents are in NH. I am currently in NH as my dad was hospitalized a week ago... Never admitted... Observed a couple of days because he became unresponsive ... Sleeps all the time... Doesn't eat much.... Cannot communicate... Just heartbreaking to see him this way. I do believe he heard us. He's always loved music so we brought a CD player. I feel he us in the last stages... But now he's in a nursing home as the caregivers and my mom could no longer take care if him safely. His neurologist had him on a lot of seraquil which a geriatric doctor immediately drastically lowered the dosage. I feel as though he experienced acute akinesia but haven't been told that.... He had several bouts of pneumonia ... Meds were changed, he experienced constipation, stopped being able to communicate and then started sleeping and eating little. He is 84 .. My mom is 86. My brother and sister and I all live in different states. This Parkinson's journey is such a heart wrenching one... My once strong, athletic, gregarious dad has been taken away. We love him unconditionally.., I just hope he's not in pain!! I wish there was more info on oarkinsons about the final stages. I'm a huge believer in that he can hear us... We continue to cover him in love. If anyone has suggestions or just wants to be friends my email address us [email protected]!

Post Edited (Folan5) : 12/8/2014 5:48:08 AM (GMT-7)

Posted 12/10/2014 4:00 AM (GMT 0)
I am working on my husband case he had Parkinson for 20 year he serveing year in 1954 thru 57 he came home and had problems and miss a lotofwork in 1995 he was told he had parkinson and was told has parkinson he was station at fort ord calif this place is superfund for clean up his record were burned in 1973 fire they have usesolentin this training camp and there is a lot of heavy waste it been research and this Solent can cause parkinson 20 to 40 years later. It was rearcher at the parkinson inst. in sunny vile calif that Solent can cause parkinson s20 to 40 year later having trouble with getting them to admit this the person that did the research is dr Sam Goldman. Has one anyone been station at fort ord calif with parkinson out there. I did a lot of research an parkinson action net also know about Dr Goldman research please reply with answer or question
Posted 12/14/2014 3:07 AM (GMT 0)
folan,

seroquel is dangerous in Pd pts who are elderly. Maybe the reason your Dad is sleeping and non communicative. Ask dr. about azilect, after seroquel is at the lowest dosage or stopped completely. I am assuming he does not have dementia.
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