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genden69

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Everything posted by genden69

  1. 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.
  2. Linda, Amazon is much cheaper than your link for briefs and pull-ups.
  3. 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?
  4. Thanks Miracleseeker. I hope things are going well for you and your mother.
  5. 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.
  6. 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.
  7. 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.
  8. 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?
  9. 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.
  10. 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.
  11. 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.
  12. 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.
  13. 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.
  14. 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.
  15. Thanks to all of you for your kind compassion, support, and helpful suggestions. I mentioned that yesterday they put in a catheter to prevent urine from contaminating his tailbone bedsore. He was uncomfortable last night, but I thought it would take a little getting used to. I was up with him most of the night. This morning he started having periodic pain spasms. He would cry out in pain, flail around for a couple of minutes, then settle down. These episodes kept getting closer together and more intense. This afternoon I called hospice. Because it is Saturday, they contacted the on call nurse. She was occupied with another case, so it was a couple of hours before she was able to get here. In the meantime, it was very difficult for DH, and wrenching for me to watch. When the nurse got here, he had a severe pain episode and was grabbing in his bladder area. She removed the catheter and it was covered with blood clots. She said he was so thin the catheter was rubbing on the bladder and causing irritation. He is resting comfortably now. I hope for a good night of sleep for me and him. I am putting extra absorbing pads in his brief to protect the bedsore area. Hope it works. The responsibility for care is heavy. As Jsaltsgaver said, those who haven't experienced this level of caregiving don't have a way to relate. Each day brings new challenges and requires an extraordinary amount of resourcefulness.
  16. In my opinion, there is no venue, churches included, that can be a justification or cover for speech that degrades, humiliates, offends, or hurts, is meant to marginalize the disabled, groups who are "different," etc. How can the expectation of civility, trust, respect, and tolerance, respect for all human beings, ever be considered shoving it down our throats? My children couldn't get away with "everyone is saying it," "I just meant," "but he is not like me." as a justification. Freedom of speech demands responsibility for what you say.
  17. Political correctness has evolved from not calling black people the "N' word to include other offensive, degrading or hurtful things that should not be used in a civilized society.
  18. Caregiver agencies provide stability. If the aide is ill, they will send another one. They are bonded, so it relieves you of liability from injury. The agency pays the social security and workmen's Comp.. The problem is that unless they are there 24 hrs a day, they often are not there when you need them for falls, etc.. In that case, a medical alert might fill in that gap. Yes, for them, it is a job. Some are more caring than others. We all wish to go quietly in our sleep before we are unable to care for ourselves, but we have to prepare for other contingencies. My husband is fortunate as is Miracleseekers mother to have a family member who loves them to meet every need. I won't be that fortunate. The hospice aides who come once a day to help me with DH are either in nursing school and will move on, or wish that they had more education and have taken the job they qualify for until they find something better. The hospice I selected sends an aide once a day to change him and bed bathe him twice a week. A nurse comes twice a week to take vital signs and to change the dressing on the bedsore on his tailbone. I think the dressing needs to be changed more often, but the aides aren't allowed to do that. I have done it myself, they can't fire me, but it is very hard alone. No matter how you look at it, protracted end of life care presents difficult problems and decisions.
  19. Lahdedah, i certainly sympathize with Mr. X. If Mr X had insurance with his employer, the results would have been the same. It doesn't matter if the insurance is Obamacare, employer insurance, or self pay insurance. The problem is how insurance companies pay for addiction treatment and mental health. If Mr. X had been treated for cancer or injuries from an accident, the best practices care would have been paid for. The state agencies who regulate what these policies pay for can make those changes.
  20. The discussion should be had, but the comparison of home owner's insurance, car insurance, and insurance for healthcare isn't quite the same. I can, in most instances fix my own leaky faucet and other routine home repairs myself. I can't fix a broken arm myself or a bladder infection. For many people, these routine health issues that require a doctor would be financially devastating without insurance. I understand your point Patriot and it is worth discussing and thinking about. When we come to a concensus about what insurance should cover in healthcare, then how to pay for that insurance, we will have the problem solved.
  21. I stand corrected. A doctor can register as a nonparticipating Medicare provider and Bill more than Medicare allows. This is called balance billing, but the amount over the Medicare allowance is restricted. The article I read said only 4% of doctors do balance billing. Patients must be told up front before services are provided of this practice.
  22. Interesting. If Medicare is billed out of this doctor's office, this is problematic.
  23. It is against the law for a doctor to accept Medicare payment, then require the patient to pay more. If a doctor accepts a Medicare patient, they must accept the Medicare payment as payment in full for the service. There are doctors who won't accept Medicare, but in my experience with myself, DH, mother who is 103, two sisters and a brother, we have only come across two doctors who wouldn't accept Medicare. My brother's family doctor switched his practice to no insurance at all and a yearly fee, then he would see you as many times in that year as needed. The other doctor was a neurologist whose practice was so large he didn't need to take Medicare patients.
  24. My suggestion is to find a continual care facility that begins with assisted living and moves to nursing home as needed on the same campus. You will not have to worry about caregivers who quit or are incompetent that you have to replace through a taxing process. Hiring your own caregivers creates extra tax work in paying social security, workmen's comp, making sure they are bonded, etc. You will also be relieved of home maintenance, yard work, etc. Transportation would be provided as needed for medical appointments, etc.. Your home and accumulations would be taken care of through sale, etc. while you are able to handle those decisions. These facilities are becoming more numerous and popular. Do your homework and make sure they meet your needs. My brother-in-law and his wife are moving into such a facility. They have no children and don't live close to any family. They are selling their home and making the move in June and feel very good about it.
  25. DH who has been diagnosed for 20 years does not have bulging eyes. My aunt who had Grave's disease had bulging eyes.