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Everything posted by genden69

  1. Will the situation ever stabilize?

    Sorry I had not read your first post where you gave more information about your mother before I posted my reply. After reading your first post, my recommendation is the same—find a Movement Disorder Specialist, a neurologist who further specializes in movement disorders including Parkinson’s. Your mother might have one of the Parkinsonisms which a Movement Disorder Specialist would recognize.
  2. Will the situation ever stabilize?

    You don’t tell us how long your Mother has been diagnosed or what stage of Parkinson’s she is in. I am so sorry you and your Mother are dealing with these difficult and troubling issues. Does she have a Movement Disorder Specialist who is overseeing her care? If not, that would be my recommendation. A Movement Disorder Specialist that you have confidence in can be very helpful in helping you through difficult situations. Sometimes an ER visit is warranted, but in my experience the ER doctors know little about Parkinson’s and the visit is less than helpful.
  3. Space is your best friend

    Decisions are hard. For what it is worth, I vote for living near your son. I say this not just for the care of your husband, but for you. As his care becomes more difficult, not only does it give you peace of mind to leave him with someone that you trust while you do necessary shopping and errands, or a little R and R, you have someone close to talk over decisions you need to make or just unload about the difficulties of caregiving. I would check with my son and see how he feels about it.
  4. Worried I have early onset of Parkinsons..38M

    I don’t have Parkinson’s, my husband does. I have such a serious nervous system reaction to levaquin and all quinalones including cipro that I refuse to take them. There are alternatives.
  5. Space is your best friend

    A skilled nursing home in my area is $10,000 a month. Assisted living is less expensive, anywhere from $3000 a month up depending on the size of room/rooms and services needed based on level of disability.
  6. Space is your best friend

    Moving to a facility, assisted living or nursing home, may be inevitable for many of us as we age or have health issues and lose mobility. If our home is designed to accommodate disability, that decision might not be forced prematurely or avoided altogether. Because I have been able to make a few accommodations to our home, I have been able to care for DH at home—making it much more comfortable for him and saving us many thousands of dollars. Miracle seeker is right. Hiring an Occupational Therapist to go through your home and make renovation suggestions is a good plan. Some of these suggestions may not cost too much, but make a big difference.
  7. 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.
  8. 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.
  9. 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.
  10. Happy Holidays

    Thank you, Adam, for the heartfelt wishes. May you have happiness and peace.
  11. 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.
  12. 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.
  13. 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.
  14. 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.
  15. 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.
  16. 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.
  17. 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.
  18. 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.
  19. Summer adventure season starting

    ellaangel2, i am in agreement with you and second your request for a separate thread.
  20. 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.
  21. 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.
  22. 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.
  23. 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.
  24. 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?