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Everything posted by genden69

  1. 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.
  2. Summer adventure season starting

    ellaangel2, i am in agreement with you and second your request for a separate thread.
  3. 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.
  4. 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.
  5. 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.
  6. 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.
  7. 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?
  8. 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.
  9. 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.
  10. 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.
  11. 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.
  12. 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?
  13. 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?
  14. 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.
  15. Bladder control

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

    Thanks Miracleseeker. I hope things are going well for you and your mother.
  17. 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.
  18. 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.
  19. 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.
  20. 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.
  21. 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.
  22. 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.
  23. 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.
  24. For caregivers only

    Miracle Seeker, you have to do what you feel good about and not worry about what someone else thinks. At the end of the day we have to feel good about our decisions and actions. Bless you for caring for your mom with such love and sacrifice.
  25. For caregivers only

    To continue the saga. Last night around 11:00 when I was preparing DH for the night, I noticed that he was extremely hot to the touch. He had been restless for a couple of hours, pulling off his sheet, fidgeting. I took his temp and it was 104.5. I quickly gathered cold wet wash cloths and covered his upper body. I was able to get him to drink a glass of cold lemonade. It brought his temp down a couple of degrees. Then it shot right back up. At around 1:00 a.m. I called hospice. A sleepy voice said a nurse would call. No nurse called. At 6:00 a.m. His temp was 103.5. I called hospice and talked to a nurse who said to give him Tylenol. I just had gel caps and he won't swallow them. The case nurse came at 9:30 a.m. While she was here, his temp started to drop. She gave him a Tylenol suppository. His temp is now normal and he is sleeping comfortably. I concluded it was related to the catheter, but the nurse isn't sure and is waiting and observing. It is so hard to see him going through this and is exacerbated by the fact that I had almost no sleep for two nights of this weekend.