Jump to content
  • Announcements

    • ForumAdmin

      Frequently Asked Questions - Step by step guides

      Do you need assistance registering, logging in, posting, etc? Please visit the all new Frequently Asked Question Forum for step-by-step guides. Click the link below to access these helpful guides. Frequently Asked Questions
    • ForumAdmin

      Recursos Nuevos en Español

      http://www.parkinson.org/ayuda   http://www.parkinson.org/espanol    
    • ForumAdmin

      Línea de Ayuda 1-800-473-4636

      Línea de Ayuda 1-800-473-4636   ¿Qué es la línea de ayuda 1-800-4PD-INFO (473-4636) de la Fundación Nacional de Parkinson? Es un número de teléfono gratuito que ayuda a las personas con la enfermedad de Parkinson, sus familiares, amigos y profesionales de salud, a solucionar diferentes inquietudes.   La línea de ayuda ofrece: Información actualizada Apoyo emocional Referidos a profesionales de salud Recursos comunitarios Amplia variedad de publicaciones gratis    


  • Content count

  • Joined

  • Last visited

  • Days Won


Everything posted by genden69

  1. Dual Diagnosis

    Clarity Now, Thank you for telling your story. From my experience with my DH with Parkinson’s, no one understands how it is to deal with the depression and anxiety that can go along with the disease, but worse than that is a lack of understanding of how difficult it is to deal with Parkinson’s psychosis. I know about the paranoia and accusations of infidelity and other indiscretions. I know about the violence as well. Fortunately DH was diagnosed after our children had grown and left home, so they did not have to deal with what I did. I can tell you that his Movement Disorder Specialist worked diligently with me to help him. Antidepressants helped with the depression to some degree, but the anxiety was more difficult. We tried every medication available for the psychosis and nothing worked. My DH ‘s paranoia cannot be blamed on agonists because he only took an agonist for a short time and the psychosis came much later. Not everyone who has Parkinson's will deal with psychosis and therefore will not relate to how awful it is. It is very disruptive to a marriage relationship. I understand and am empathetic with what you and your children have gone through. This is a terrible disease that can have terrible consequences for some. He also developed Parkinson’s dementia, but that has been much easier to deal with for me than the psychosis. Please accept my wish for healing and peace for you and your family.
  2. How to plan your own future

    If you have no one to care for you on a daily basis when needed, a care facility will be the option. I am the caregiver for my DH with PD, so currently and hopefully to the end, he won’t need to be in a facility. Though I don’t have PD, chances are high that I will need care, but with no caregiver, so I will likely be in a facility. I have saved as much money as possible for this eventuality and hope it will be enough. You are probably not eligible for long-term care insurance unless you already have it. Also, if you are a veteran, there are paid care options through the VA. Though things do not often go as planned, it is smart to plan ahead. Things go much better with the financial ability to make good choices.
  3. I am glad you have a neighbor to help when needed. I lifted my DH daily for a long time and it took a physical toll on me. He has been bedridden for a year and finally my legs, and feet are healing and returning to near normal.
  4. Happy Holidays

    Thank you, Adam, for the heartfelt wishes. May you have happiness and peace.
  5. Happy Holidays

    As caregivers, we experience hard times and much sadness. My hope is that we will be able to find the good and enjoy the holidays. May we all find happiness in the new year.
  6. Caretaker tip

    This tip is for those who are caregivers of someone bedridden, who sits a lot, or who spends a lot of time in a wheelchair and is at risk for bedsores or pressure sores. After DH was bedridden for a while, he developed a serious pressure sore on his tailbone. I was naive about the risk and thought hospice was covering all bases, but not. He cannot lie on his back and has to be regularly rotated from one side to the other. Because he is so thin, his hip bones are very prominent and soon red spots began to appear there indicating the beginning of pressure sores. I searched for a solution. I am a quilter and my favorite batting is Hobbs wool. I had a bag of leftover cuttings. Wool is resilient. It does not mat down. I had been using a sheepskin all along, but it didn’t prevent the tailbone pressure sore. The batting is spongy and I can use as many layers as I want for cushioning. We still rotate him regularly, but always with layers of wool batting under his hipbones. He has developed no bedsores there and the tailbone bedsore is healing miraculously when the hospice nurses told me it would not heal and would only get worse. The nurses are amazed and are now recommending the batting to other patients at risk for pressure sores. It is an effective, easy and relatively inexpensive solution for a difficult problem. I hope this information is of help to someone else.
  7. Caretaker tip

    Caregiving is a challenging and lonely job—a job most of us don’t have training for or even experience with. As a result, we find our way through determination and inventiveness. If anyone has helpful tips to pass along, I would be ever so grateful.
  8. Caretaker tip

    Another tip. Because DH is lying on one side or the other most of the time, his ears are at risk for compression sores. I have a plush throw that I put over his pillow to cushion his ears. It washes easily and has been effective. This is not minky. Minky sheds too much. It is a soft plush—maybe like a fleece, but I call it plush. It is soft and cushiony. My daughter says they are popular as throws and there are a lot of them in the stores.
  9. Call your senator about the awful tax bill

    Please give a source for this article. Is this your words, or is it from an unnamed source? I like to know where the information I read comes from.
  10. I am so sorry you are dealing with this. The only thing I can say is that is what I dealt with until my DH became bedridden because he could no longer walk and his dementia had advanced. The falling stopped at that point of course. He did slip out of bed three times in the beginning, but no such incidents for the past ten months, The disease progresses and brings new challenges. Celebrate and enjoy any good days or moments you have.
  11. Call your senator about the awful tax bill

    A relevant fact-not a point of argument because I don’t want to argue—almost half of the 45% who do not pay federal taxes are retirees who don’t have enough income to pay taxes. There are other points that deserve more scrutiny such as those who make the giant share of money should pay the giant share of the taxes. Also the statistics you have presented just go to highlight the fact that we have a huge wealth gap in this country and the proposed tax bill will widen this gap. I will leave it there—no arguing intended.
  12. Disability

    My husband did not apply for disability, but friends that have say it is essential to hire a good disability lawyer. There are too many "mother may I" requirements to traverse it on your own.
  13. Summer adventure season starting

    ellaangel2, i am in agreement with you and second your request for a separate thread.
  14. Some advice please

    The advice is good to write down the new symptoms and your concerns, then discuss them with his doctor. If he has been diagnosed with Parkinson's for ten years, it is not likely Lewy body dementia. It could be Parkinson's dementia. He may need a medication adjustment, his recent illness may have caused some temporary symptoms, or it might be the progression of the disease. When the doctor has all the information he will be able to sort it out for you.
  15. latest news on healthcare cuts coming

    PatriotM, There are some of us who believe that everyone should have healthcare and are willing to pay taxes that may help in that goal. There are others who believe that if you can afford healthcare, you get healthcare and if you can't afford it, you don't. There are proponents of either side. Any attempt to change the minds of those who think differently is almost always futile.
  16. No Sleep For The Weary

    What I have learned as caregiver for my DH diagnosed 20+ years ago is that medications should be kept as simple as possible, especially for the elderly. More medications for the side effects of other medications is a vicious cycle. DH's MDS did not prescribe agonists for the elderly because they often contribute to mental confusion. Another side effect of Mirapex is sleep problems and insomnia. DH did best in the later stages of the disease with regular sinemet every two hours during waking hours and an extended release sinemet at bedtime. We found that optimizing sinemet was the best for him. I hope you can find a medication adjustment so that your mother and her caregiver can get sleep.
  17. No Sleep For The Weary

    As caregiver of DH with Parkinson's, diagnosed 20+ years, I have found that in regards to medication, simple is better. For DH, agonists including Mirapex, caused more problems with side effects than benefits. DH's MDS did not prescribe agonists for elderly patients because of risk of worsening dementia. One of the side effects of Mirapex is sleep problems. DH responded best with regular sinemet at two hour intervals and an extended release sinemet at bedtime. Unfortunately, in my opinion, the tendency is to add more medications that cause side effects rather than optimizing sinemet. I so hope you can get her medication adjusted so that both your mother and the caregiver can have rest.
  18. For caregivers only

    With apologies to those who are not caregivers, end stage issues are probably not what anyone but caregivers want to read. I understand that need and don't want to trouble anyone diagnosed with PD. As a caregiver, I need support from other caregivers. As some of you know from reading my posts, DH has been diagnosed for twenty years. He has Parkinson's Dementia, Parkinson's Psychosis, severe orthostatic hypotension, and is totally bedridden for the last three plus months. In spite of all if this, his vital signs are good. He has no swallowing problems and is still eating. I am caring for him at home with the help of hospice since he has been bedridden. He has developed a bedsore in the tailbone area that despite our best efforts is getting worse. Today the nurse put in a catheter thinking that if the area is kept dry, it may prevent infection. There is risk of infection from the catheter so we have to weigh the risks. Where I need help and support is with the emotional roller coaster of this end-if-life care. On an intellectual level I know he has very little if any quality of life. Intellectually if he were to pass tonight, he would be in a better place. Intellectually, if he were to pass, I could get on with life for the few years I will have left. Emotionally it is much different. In the morning the first thing I do is check to see if his covers are moving up and down to confirm breathing, then I plan what I will prepare that he might like to eat with plan B and C in mind if he isn't interested. Though he sleeps a lot, I spend the day focused on caring for him. It is emotionally wrenching when he cries our and moans when I or the hospice aide changes his brief or bedding or give him a bed bath. His body hurts and he cries out when moved because of not moving and Parkinson's stiffness I guess. It is emotionally wrenching that he is in his own reality of dementia. The fact that the DH that I have been married to for 56 years isn't in that body any more is a painful reality. It is emotionally wrenching that there is no cure for his condition and that he will die, but at the same time I don't know how much more time I can live with this emotional pain. I am sure that all of you caregivers are dealing with similar struggles. How have you been able to deal with it?
  19. Big News?

    Twenty + years ago when my husband was diagnosed, his MDS in all sincerity told us that medication would eliminate any Parkinson's symptoms for five years and after that we wouldn't need to worry because there would be a cure. I hope and pray that the cure is finally here--too late for my DH, but a welcome life changer for so many.
  20. Husband keeps falling need suggestions

    Maral77, I wish you and your husband the best and hope you were not offended by my comments. My DH has been diagnosed for 20+ years, has severe dementia and has been bed bound and on hospice for eight months. I care for him at home. The daily battle with the help of CNA's and nurses is to prevent and treat pressure sores. He has a deep bedsore on his tailbone that we are keeping from spreading and getting infected. It means constant turning and vigilance. A nurse changes his dressing daily. Today we are dealing with bowel issues. Feeding him has become a challenge. He has no co-morbid conditions and his vital statistics are very good. He is very thin. He has no quality of life. This may sound harsh, but with what he is suffering, if he had passed away quickly from a fall, in my opinion, it would have been a blessing. As the nurse left a few minutes ago, she said it breaks my heart. There are things worse than death.
  21. Husband keeps falling need suggestions

    No, you would not be cited for that. When they take patients for walks in a wheelchair, they can strap them in. That makes sense. It used to be because it was easier and took less staff that patients were put in a chair, strapped in and then left for the day. Then at night tied in for the night. It was for the convenience of the facility, but torture for the patients. Your comment about bubble wrap was an appropriate observation. It is nearly impossible to avoid risks and still treat patients humanely and with dignity. We all die, there is no escaping that fact, but if we make life so miserable to avoid risks that life is not worth living, that is not a good solution either.
  22. Husband keeps falling need suggestions

    When my husband was in rehab, because he was a fall risk, they used what is called a high-low bed that can be lowered right to the floor to prevent injury if he should roll out of bed. An honest fact is that though precautions can be taken, falls are hard to totally prevent without someone in attendance 24 hours a day and even then there are falls. The reason for no long bars on the bed is that they can cause greater injury. It is easy to blame the NH and regulations, but they do the best they can. Before my DH was totally bedridden, he would fall right before my eyes when I was within an arms reach and in our home under my 24 hour care. One of the aides who comes on hospice told me one of her patients fell and shattered her hip last week. Her son had taken her into the bathroom to help her shower. He had her hold onto the bar while he turned to get her clothes and she went down. I am so sorry about the falls. Maybe it is better to risk falls than to physically restrain someone by tying them in a chair or bed all the time. That is what they used to do before regulations against it.
  23. Hospice

    I am being encouraged by our Primary Care Physician to put my DH (Parkinson's diagnosed 19 1/2 years) on hospice. This is a difficult and heart wrenching decision for me. Any advice from those of you who have had personal experience with hospice?
  24. Morphine in hospice care

    My PD husband is on home hospice. For the past week he has been refusing food, eating very little. He has been taking a little liquid. The hospice nurse has been giving him a small dose of morphine when she thinks he is in discomfort. Now she wants me to give it to him on a regular basis whether he exhibits pain or not. She says she wants him "evened out." I don't have a problem with morphine when he is obviously in pain, but when he is sleeping comfortably, what is the point? Anyone have any experience with hospice end of life and morphine?