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diet for advanced PD


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#21 chiefy275

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Posted 03 March 2012 - 10:15 PM

Dear Ms. Holden,
My dad passed away today at 11;55 am. We were all there this morning and as luck would have it, some of us, including myself, went to the flower shop to order flowers for him for his funeral before he passed and no sooner got there than a sibling called and said dad had died. I had whispered to him before I left that I would be back in a bit. As one sibling said, he waited until those closest to him left the room before he would let go, as he didn't want us to see him pass. No matter, I was still upset that as his number one caretaker amongst the siblings, I was not there. I cannot describe the emotions of trying to keep someone healthy and have abn enjoyable life or as much as possible and then have him go on hospice and watch him starve to death in front of your eyes. He was not in pain and for much of the time in hospice, was awake and able to understand what was happening. Very very sad. It will certainly take awhile to recover from this ordeal and find a semblance of normalcy. Throughout his ordeal, I had to not only fight a disease, but doctors and hospital and nursing home staffs that could not be more ignorant about the care of a PD patient. Total mind blowing- nuerologists ignorant about shock therapy and even when they saw it worked did not recommend follow up therapy when he slid back into depression, pyschiatrists ignorant about the cause of his depression and experimenting with all sorts of drugs, not one of which worked on its own. You basically had to be your own doctor. Even this last time, the hospital was giving him protein nourishment without delaying the feeding so his medicine could work. Dad was a trooper, only complaining when he was drugged up or in the hospital tied to tubes down his throat. He managed to have extra time on this earth through the help of his family and this website which informed me about what to do, as well as fellow PD sufferers or their caregivers who gave helpful tips. Without al this, dad would have passed a long time ago.
I just want to say thanks for all your help along the way. It helped relieve anxiety from not knowing what to do. The advice certainly would have helped a lot more if my mom, who is not able to take advice without an argument, had done what she was told. Now she has seen the result of her iron hand on her family. Only at the end did she show any semblance of compassion.
I'll be back in touch. I am sure my dad would have wanted to thank you for the advice and the extra time on this earth he had because of it.
Thanks again,
Bob

#22 Kathrynne Holden, MS

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Posted 05 March 2012 - 01:38 PM

Bob, I hope you are not blaming yourself for your father’s dehydration or the pneumonia that followed. You have done everything imaginable to provide support, care, and nourishment for him down through the years.

By no means were you responsible for his dehydration. He was, and no doubt had been for some time, unable to take in enough fluids to maintain good hydration. This is no one’s fault, it’s a result of the progression of PD. The constipation also can become much more difficult to manage as PD progresses – you knew it was important to prevent bowel impaction, and could not predict that suppositories would result in diarrhea. You were doing a superhuman job of trying to manage his many concerns and symptoms and you were amazingly successful for 18 years.

It’s most fortunate that he had a living will, and that you were able to go over it with him and that he could respond and confirm his wishes. He is now able to rest comfortably with family near, and this is a great blessing.

You deserve nothing but thanks and praise, which I am certain your father would tell you if he could. I hope you will be at peace in your mind and heart, knowing that your love sustained your father and gave him 18 years with his family.
Best regards,

Kathrynne Holden, MS

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#23 Kathrynne Holden, MS

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Posted 05 March 2012 - 02:52 PM

Bob, your post brought tears. May I offer my deepest sympathy on the loss of your dear father. I feel as though I knew him, and I certainly cared about him from the start. Your father was a strong and determined man, who surely knew of your love and care.

You have worked and fought so long and so hard, and I am sure have worn yourself out – I cannot imagine what you must be feeling. I can say, though, that it very often happens that a person is ready to leave this world, but feels they cannot while a loved one is near. I’ll bet your father was strong and determined to the very end, and chose the exact moment when he wanted to leave. Perhaps this effort to spare you pain was a father’s last gift – his only way to thank you for all your care.

Please be sure to take care of yourself now – you need and deserve rest and nourishment, and peace of mind. I hope the peace will come from the knowledge that your father enjoyed many wonderful years with his loved ones, thanks to your your problem-solving, constant inquiries and research, attentiveness to his needs, and devotion.

I feel honored to have known you, and indirectly, your father. You remain in my thoughts and prayers.
Best regards,

Kathrynne Holden, MS

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#24 chiefy275

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Posted 12 March 2012 - 12:47 PM

Dear Ms. Holden,
Dad passed away March 3, just before noon. It was a painful process for us to watch and I do not think he gave it a thought years ago when he made his living will, that instead of making it easier for us, he made it harder to adhere to his wishes. He had recovered from his heart attack and the pneumonia, but could not stay awake to eat, chew and swallow for more than a few moments. He would then fall back to sleep, sometimes with food in his mouth. Initially, we were told not to feed him, then it changed to only feed him when he was awake. We followed these instructions but he was still aspirating food and had to be suctioned. We had, as I stated previously, changed his feeding of protein stopped for two hours between medicine times, so it could be absorbed properly. This seemed to work for a day but then he would fall back to sleep, even though the routine stayed the same. He was lucid when awake which was not a lot. I had the opportunity to ask him during one of his awake moments if he wanted a feeding tube in his stomach and he answered with a strong no. I explained to him what would happen if he did not have this done and he seemed to contemplate what I was saying without responding. Despite this, he did not want to give up but seemed to accept his fate. We did not explicitly tell him he was in hospice but I am sure he figured out he was dying by what we were telling and saying to him. He got a chance to see all his close relatives who lived nearby and my brother from California. He knew we were there and replied to my brother's telling him that we would take care of mom by saying, "I know". He also told me that he loved me, and of course, all of us. We spent the last morning around his bed, just talking about this and that as we knew the end was coming. Unfortunately, with our luck being what it is, the nursing home fire alarm went off just before the end. It figures.
Dad had a very nice funeral, with speeches by his children and grandson, a sermon and verses said, the songs Amazing Grace and Danny Boy were sung and military honors with taps was performed at the cemetery. I never knew where my parents plot was and it figures, Dad picked one close by the bell tower so he can listen to the chimes whenever they play. I know he picked that one on purpose.
Now Ms. Holden, I know you can't answer the following but why is it that nursing home staff, doctors, nurses, hospitals know so little about how to treat a person with Parkinsons? Every time we encountered these folks, it was the same. The doctors would not recommend shock therapy, even after we told them it worked. They do not seem to understand that protein is the enemy of Parkinson's patients. Once, I told the nutritionist at the nursing home years ago and she did not know it and thanked me for the info as well as being told about this website. The nurses in the hospital wanted to know who it was who googled the fact that you cannot give protein to a PD patient except at dinner. You especially cannot give it to him around the clock and expect him to wake up. I told them I did and I didn't have to google it. I wanted to tell them a few other things which are unprintable. During this whole time with dad, it always seemed the people who were supposed to help the most, instead, were always making things worse or at best, did not know how to do things the right way. The folks in the nursing home would let him lie down too much, the patient needs to sit up at all times and when sleeping, needs to be elevated. Of course he got pneumonia that time but quickly recovered, only because I happened by at just the right moment to catch it early.
Also, regarding this last episode, I still have a hard time trying to figure out what happened. In January, he had a cold and the head of the aide agency, a nurse, checked him out and told us what to do. He seemed to recover OK. But, I noticed in the weeks before this last episode, that in the morning only, he would, upon sitting up, sneeze/cough out brown mucous of significant volume. He would not emit anything else during the day, nor did I notice any changes, other than, at the same time, he developed severe constipation for which we gave him suppositories a week apart. This helped the first time and went off without a problem. He then did not go for another 5 days or so and we gave him another. Mind you, we were also giving him stool softeners each day, along with prune juice and milk of magnesia after he did not go for a few days. He just would not go on his own the last two weeks. The second suppository cleaned him out and we had to give him something to make him stop. It was not a bowel impaction as solid material did come out of his bowel. During this time, he was no different than any other time. The next day after we gave him something to make him stop going from the second suppository, he was very good, loose, maybe too loose as he tended to lean foward in his chair and the aide had to keep telling him not to. That was a Friday. Over the weekend, he was not as good and tended to sleep most of the time in his chair between meals. But that was the norm. On Monday, he was still sleepy. He had supper in the kitchen and we brushed his teeth and rinsed out his mouth. However, he was spitting out the water/rinse just as fast as I put it inhis mouth. We walked him insde and sat him down in his chair and only then did we notice a problem. He had a loose cough which he could not take enough of a breath to cough and break it up. We should, in hindsight, have taken him to the hospital right then and there. I can't tell you why we did not except that my mom is and always has been a hard head and probably did not want to go to the hospital again. It was not until the next morning that the ambulance was called and I am sure as anything, that if I was not there, mom would have done nothing and let him die. I cannot explain her either. My question then is this, what do you think caused this last episode. Was it something building up in his system that just suddenly presented itself as pneumonia or was it something he aspirated that night at dinner? If it helps any, when this started to happen, he did not have a fever, his pulse was normal, (55) his skin did not turn blue, he was awake, at least until we woke him up that morning. I just need to figure out what went on. Also, when they released him from the hospital, they said he was clear of pneumonia but he still rattled when he breathed. The doctor told us that was his body preventing the mucous from going into his lungs. As soon as he got to the nursing home, the hospice nurse put her stethoscope on him and believe me, she didn't have it on him for more than one heart beat at any one of the points she put the stethoscope. She said he was full of fluids and it would be a mistake to try and give him anything to eat or drink as it would make things worse.
Makes one suspicious a little. They started with the pain killers right away which made dad sleepy. Yet, he did manage each day to talk to us or respond right until the night before.
Is there a place on this website where I can outline my dad's story so others can be helped? I am sure it is a story told many times but you never know what you can tell others that may be helpful. Once again, on behalf of my family, I wish to thank you, the readers here and the doctors, who gave me quick answers to many a question that helped relieve the anxiety. I remember readers who told me that when my dad got so bad from a mere cold, that any stress would make him worse. And they were right. Luckily, he did not get sick from colds much.
Thanks again. Hopefully, I won't have any more family members get PD, but I will continue to follow along so I can pass any new info to anyone who I know can use it.
Best Regards to you for all you do,
Bob Hubbard
son George Hubbard

#25 chiefy275

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Posted 13 March 2012 - 10:03 AM

Dear Ms. Holden,
I did not see your posts from the other day when I wrote yesterday. I did not realize there was a page two. I thank you for your thoughts and prayers and I was informing my dad about everyone, including yourself, who offered their concerns and when I asked him what I should tell them, he said to say Hi, as that is all he could give. I told him that I was in contact with you and getting the best advice possible. I know you would have enjoyed his company as he was as easy going as a light spring breeze. I am starting to feel a little better but wake up every day with anxiety for a bit as I would before he passed, my thoughts racing as to what I could do to help. The first day, I was on auto pilot as I was so conditioned to racing somewhere for a long time and I had to keep telling myself there was nowhere I had to go that morning. I am sure my dad would not want me or anyone to be upset, he was a kind guy and would not stay mad, even when his doctors made mistakes. He would just roll with whatever came his way.
I look forward to hearing form you as regards my questions yesterday. In the meantime, I encountered someone at the service who has a friend with PD, aged 63, and according to her, it is advancing rapidly. I told her about the website and it sounded like maybe she could be helped by deep brain therapy as her friend has the shaking PD. My dad had the rigid type and never really shook, except for a little in his hands.
Thanks again,
Bob

#26 Kathrynne Holden, MS

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Posted 14 March 2012 - 07:29 PM

Dear Bob,
Again, you have written such a detailed, moving, and meaningful post, so valuable for those of us working and caring for people with Parkinson’s disease. Your information regarding your father’s care, and his sudden downturn and hospitalization is very well written. I am so very happy to know that his mind remained clear and that he could tell you all of his love and say his farewells. It is comforting, too, that his funeral was so dignified and so well attended; he will always be with you, in a way – in your memories and your love, and his love for you.

Your questions are so pointed, and so very important, and how I wish I had good answers for you. The National Parkinson Foundation, and other agencies, have designed information packets that people can take with them to hospitals and nursing homes, to educate the staff about the needs of people with PD. I have taught many, many seminars to health professionals on this subject. Yet there are so very many more, in every town and city in the world, that have not yet heard the message.

Your question, what caused this last episode, is not an easy one to answer. Your dad had always been such a fighter, and overcame so many obstacles and tough times. My best guess would be that it likely was a combination of circumstances. It had become more and more difficult for him to stay awake, and more difficult for him to swallow. You were all doing a magnificent job of making sure he got food and fluids, sat upright, coughed appropriately. But it is impossible to accurately gauge an individual’s needs as PD progresses, and how much food/fluid he is getting, especially with more than one caregiver. The sleepiness and swallowing difficulty may have led to not getting enough fluids, and dehydration, constipation, and stress resulted – not something anyone could have predicted at all. Nor could anyone have predicted that his swallowing ability would suddenly deteriorate and that he might aspirate food or fluid, leading to pneumonia.

Quite likely he was weakened more than he, or anyone, could possibly have realized, and if so, this may have led to a combination of effects upon his system that were simply too much for him to overcome.

Your wish to help others with PD, and those caring for people with PD, is admirable and I hope you will indeed follow up on this idea. I hope you will post to the NPF Caregivers Forum at: http://forum.parkins...regivers-forum/

Another excellent forum is CARE (Caregivers Are Really Essential):

http://listserv.muoh...SUBED1=care&A=1

People are constantly discussing the very problems you have mentioned, and could benefit from your father’s experience and all the help you gave him.

I am so happy that you have been able to post your experiences and concerns here on the forum, and I do believe you have a great deal of help to offer others. Please do continue your caring work – the world of Parkinson’s needs more people like you.
Best regards,

Kathrynne Holden, MS

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#27 Kathrynne Holden, MS

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Posted 16 March 2012 - 04:10 PM

Bob, I also missed your post on page 2 at first, I didn't scroll down far enough. Thank you so much for forwarding your father's greeting -- I only wish I could have said "Hi" back, I feel as though I did know him. It's good to know you're beginning to feel a bit better, and I trust that in the near future, you will be sleeping better, and not feeling so upset -- indeed, I am very sure your dad would not want that. Just the opposite, I'd bet. If it seems good to you to join one of the caregivers forums, I believe you will find others who have experienced many of the same worries, frustrations, and concerns that you have been through, and perhaps that will help keep things in perspective.

I hope your acquaintance will use the forums for help for her friend. The doctors are very knowledgeable and helpful, as you know, and can help give guidance and questions to ask her neurologist.

Please take care of yourself, and I hope you are secure in the knowledge that thanks to your efforts, your dad had many years filled with love and family. I know he did his best to tell you so, to the very end.
Best regards,

Kathrynne Holden, MS

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