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Everything posted by genden69

  1. genden69

    Loss of confidence

    Miracleseeker, look back at the last year and see all the acts of kindness you have given to your mother. No one is ever sorry for being kind. You do what you do because you love your mother. I know it is hard. I have been there, but there will be no regrets. Please take some time for yourself if you can. A little break does wonders.
  2. DH passed away Sunday April 8 at home after being diagnosed with Parkinson’s for twenty-one years. He had been on hospice for fifteen months totally bedridden for the entire time. He had suffered orthostatic hypotension, hallucinations, psychosis, Parkinson’s dementia, and Cachexia and other ravages of a terrible disease that robbed him of his mental and physical abilities. Though it is too late for DH, I hope for a cure and prevention soon to spare others. Thanks to those of you on this forum who have been supportive. It has been helpful. My heart goes out to caregivers who are on the same journey I have been on. Parkinson’s is a cruel thief that robs us of all that is precious. May it soon be conquered.
  3. genden69

    The period at the end of the sentence.

    Thank you, Linda. Over the years as I have watched DH lose mental and physical abilities, sometimes the pain and grief has been almost unbearable. This might sound odd to say, but his death has almost been anticlimactic. I have had my heart torn out on a daily basis and cried myself dry for many years. His death was a sweet release for him from the prison of the hospital bed, a body and mind that weren't functioning for him, and the indignities of not being able to care for himself. My heart aches. There is a lonely emptiness, but not for what he was at death, but for what he was when he was whole. I believe he is whole now, with his abilities restored and waiting for me, I am compelled half a dozen times a day to go to the door of his room and check to make sure he isn’t still there waiting for me to take care of him. I have been vigilant and on call for so long, it will take some time for that feeling of responsibility for his care to leave me. Though it was very hard, it was my pleasure to be the one to care for him through all the difficult times.
  4. genden69

    The period at the end of the sentence.

    Thank you again for the beautiful thoughts and prayers. It lifts me up. Adams234, what a beautiful prayer and sentiment. I appreciate all of the kind thoughts that have been posted. To the question of how old DH was, he was 81 years old. He was diagnosed at age 60. With medication, he did very well for five years, reasonably well for four more years, then disabling symptoms, mental and physical began to appear and continued to escalate in intensity until the end.
  5. genden69

    The period at the end of the sentence.

    Thanks to all of you for your kind words of condolence.
  6. genden69

    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.
  7. genden69

    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.
  8. genden69

    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.
  9. genden69

    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.
  10. genden69

    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.
  11. genden69

    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.
  12. genden69

    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.
  13. genden69

    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.
  14. 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.
  15. genden69

    Happy Holidays

    Thank you, Adam, for the heartfelt wishes. May you have happiness and peace.
  16. genden69

    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.
  17. genden69

    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.
  18. genden69

    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.
  19. genden69

    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.
  20. genden69

    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.
  21. 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.
  22. genden69

    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.
  23. genden69


    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.
  24. genden69

    Summer adventure season starting

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