Helping Those Who Care for Parkinson's Patients
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As most of you know, we lost our family rock 5+ years ago. I occasionally come here to see if there is anyone trying a new treatment that is helping (not yet, sadly) and today found myself reading how so many of you are are dealing with the dementia issues PD brings, which I too found to be much harder than the mobility issues of PD. We got to a point where our neurologist suggested hospice. I seem to remember it was when I was having an increasingly hard time trying to get my husband to eat and drink. We had dealt with all of the issues you all mention, inability to dress/bathe/even feed himself, rummaging around at night but increasingly falling or getting "lost" in our small home (and then yelling for help to get up), and on and on as all of you know. As hard as all of that was, it was nothing close to the shock of hitting the point when my husband just did not want to eat or drink. I had to nag, beg, and plead to get him to just take a few spoon or forkfuls, and as the days and weeks went by he just took in less and less. The doctor could see the decline and referred hospice to us. I did not feel we were at that point but they will come do an assessment and make that decision. When they came to our home, they of course said yes, you need hospice and probably should have called us in long ago. Once they began their work, and I got past the flood of tears that came after that first visit, it honestly was a relief. They managed (and covered) all medications. They evaluated him medically every time they came. They gently bathed my husband (bed bath only by the time they came in-they were shocked I was still getting my husband in and out of the shower). They washed and combed his hair, even gave him a haircut, cut his nails, shaved him, and provded not only the hospital bed but all of the bed pads, diapers, etc. that we needed. I never knew what hospice really provided and it gave me the energy to "be" with him undistracted by the exhausting tasks of taking care of him. Because of hospice, I was able to keep my husband in our home until he passed away, which allowed our children and myself to spend as much time as possible with him. I will be forever grateful to and for those loving, kind, compassionate hospice ladies who helped us navigate the most difficult part of the most difficult journey in our lives. So don't be afraid of calling in hospice like I was. Any neurologist who deals with Parksinson's should have a pretty good idea of when it is appropriate to bring in hospice, and of course the hospice team will do an evaluation as well. One thing I would add: I did not want to upset my husband, so I did not allow anyone to use the word "hospice" in our home. I simply told my husband that we were bringing in some help, and instructed the children and hospice staffers not to use the "H" word. My husband was brilliant, though, and I suspect he knew who those women were and why they were in our house. It made me feel a little better, though, since I was not able to do much else to help him. Most people cannot truly be a caregiver, it is simply too hard, physically and emotionally. I can't think of anything more difficult, it is 24/7, 52/365. I hope that each of you are able to take comfort every day, knowing that you are providing care and love to your PWP as best as you can, and that if your loved one could, they would tell you how much they love you and so appreciate it 
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