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genden69

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genden69 last won the day on July 18

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About genden69

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  • Birthday 01/01/1970
  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. Bladder control

    I hope you didn't take it as a criticism, Linda. Just a heads up that one of the brands I have used for DH is almost half as much in price on Amazon. It pays to price shop. Thanks for the list of recommended brands.
  6. Bladder control

    Linda, Amazon is much cheaper than your link for briefs and pull-ups.
  7. Morphine in hospice care

    Thanks Miracleseeker. I hope things are going well for you and your mother.
  8. Morphine in hospice care

    Thanks everyone. Just an update. DH had a high fever and seemed in pain. The hospice nurse's solution was morphine, but I was hesitant. She said pain and fever is normal for end of life. The aide and I made a discovery. He actually had an infection that had probably been brewing for a while--epididymitis--which likely came from a UTI. A very painful infection. A course of cipro stopped the infection. The fever and pain are gone and he is eating again. Morphine can mask treatable problems. He is still bedridden, profound dementia, but the last few days he has been enjoying produce, his favorites, corn on the cob if I hold it for him and rotate it, watermelon, and peaches off our tree with ice cream. He may make it for the tomatoes, cantaloupe and plums. I am tired, but carrying on with the tasks.
  9. Morphine in hospice care

    tedybrs, so sorry about the loss of your husband. Since your husband was sound of mind enough to make a decision, it took the pressure off of you. I am happy for you both that he passed peacefully and with dignity on his own terms.
  10. Morphine in hospice care

    Thanks Diane and Adrienne for your comfort and support. It is a hard time in many ways. He has Parkinson's dementia, so I don't believe he understands how dire his situation is. On the other hand now and again he expresses a coherent thought that surprises me. I didn't give him morphine last night because he seemed peaceful when he went to sleep. I told myself that if he awakened during the night and seemed restless or in pain I would give the morphine, but he slept through the night. He has eaten a few spoonfuls of mashed pitatoes and some juice today but that is all. He began losing weight a year and a half ago. The weight loss seemed to happen even when he was eating nourishing meals. I doubt if he weighs a hundred pounds now. He is skin stretched over bone. He has not walked, been totally bedridden since the last week of December when his legs collapsed under him. I have tried hard to avoid bedsores, but he has one on his tailbone that is not healing---actually getting worse. A hospice nurse changes the dressing every day. My hope is that when the inevitable passing comes, it will be peaceful and painless. It has been a long journey for both of us.
  11. 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?
  12. Social Security Disability - Trump's Budget

    What do we do to sort things out and revise policies so that people who really need the help get it? The unfortunate truth is that when cuts are made, the most vulnerable are the ones who get cut. My son, early in his career, worked with the homeless population. He said that the majority of the homeless have significant mental health issues. The panhandlers who have figured out how to hold up a sign with a heart wrenching story, then go around the corner and get in a nice car and go home with cash give a bad name to the really needy homeless and unemployed. My son also worked with the aging population who lived in subsidized housing. Many were elderly widows who had very few resources. The majority had worked hard in low wage jobs and hadn't been able to save for retirement. They didn't have big televisions or luxuries. They had food and shelter. How do we separate out the truly needy from the freeloaders? An across the board cut doesn't do that. Government programs really help those that truly need the help. Government programs enable the the shiftless free loaders and further ensure that they don't become productive citizens.
  13. For caregivers only

    Silent55: I have been told that if I don't take care of myself, I can't take care of someone else. It is hard to do. Don't feel guilty for taking care of your needs and your husband's needs. We have to prioritize because we aren't capable of doing everything. I am sorry you are feeling so exhausted. Do the best you can and don't beat yourself up over what you can't do. Sounds to me like you are doing everything you can for your mother. Miracleseeker: I am so sorry you are having health issues. Get the ultrasound. Don't cross any bridges before you need to. You may not need surgery, so no need to worry unnecessarily. I wish you the very best. Please take care of yourself.
  14. Tell Congress: Vote No on New Health Care Reform Proposal

    People who have no children pay taxes to support the schooling of other people's children. People pay taxes for roads they may never use. People pay taxes to support research for diseases they may never get. People pay taxes for people who are victims of natural disasters when they may never have a natural disaster themselves. Why then is it such a foreign idea that we pay taxes for healthcare we may never need or don't need today, but may need in the future and to benefit others who do need healthcare? The philosophy is that we have a communal responsibility to others and that the world is a better place if those who are able help lift the load of those who can't do for themselves. The argument can be made that this shared financial lift provides economic and social benefits for all of us. Are healthy children more likely to do better in school and become productive, contributing citizens? Just one possible economic benefit to society. There are many more. The alternate philosophy is the Darwinian survival of the fittest. The philosophy that we are only responsible for ourselves and must turn a blind eye to the needs of others. ----Am I my brother's keeper? A healthcare system that eliminates expensive layers that have nothing to contribute to our care, only make it more complicated, will lower healthcare costs.
  15. Frustrating day!

    Pathfinder, I am so sorry you are going through a difficult time for you and for him. I know from my experience with DH who is now on hospice, that we as caregivers want everything to be "fixed" when in reality Parkinsons is not a fixable disease. I don't know how long your DH has been diagnosed with Parkinson's or what stage he is in. For me the most difficult thing has been to come to an acceptance of the fact that there is nothing more that can be done other than to keep him as comfortable as possible. I have so desperately wanted doctors to fix everything, but finally I realized as I read the doctor's eyes that it wasn't fixable. I could have interpreted this as not caring, but I know this isn't true. It is a doctor knowing what is possible from training and experience. My advice is to follow the doctor's recommendations. At your appointment, ask the doctor to level with you about what to expect and how you can handle things. My husband is totally bedridden. A hospice CNA comes in twice a day to change him and reposition him. Twice a week they give him a bed bath. Three times a week a nurse comes in to check him and change the dressing on a bedsore on his tailbone. I can call a nurse if I need to any time of day or night. So far I have been able to manage caring for him at home. Acceptance of the inevitable has been difficult, but ultimately necessary. Get the best medical advice there is and go from there. I wish you strength--emotionally and physically.
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