For those who care for someone with Parkinson's disease
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Hi. I haven't posted in a while because my dad is getting worse. He needs Sinemet every 3 hours, day and night. His wear-off, freezing, neediness, and cognitive impairment are driving me crazy. After 2 years of asking, I now have an aide coming in 2 nights a week, but I don't know how much longer I can keep going. How long can I live this sleep-deprived? When dad freezes, I try to pull him up from the adjustable bed to sit and stand. He is 180 pounds and it is breaking my back. Even when I help him initiate movement it is increasingly difficult. I looked at a horrible nursing home (unbeknownst to him) and an assisted living place for him but I do not think he will agree to respite or long term care. Earlier this month I had to leave for 2 conferences and my brother covered for me and I think he has gotten worse since I left. He is an endless bucket of needs. I am losing my compassion. Has anyone been in this situation before? |
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One word: respite. I don't think my husband would still be at home if I hadn't accidentally discovered respite care and started taking him there. We save up and I take him for a week or so at a time, as I don't think one or two days is enough to recharge. The last time I took my husband, I came home and fell asleep for three hours, got up, made dinner and fed the kids, then went back to bed and slept all night-with no interruptions. It was life-giving. Your dad will probably not want to go. I was told they never do, so you have to just take him. I have been told to explain why he is going, if he can understand, but if not, to just take him. Most places can help get him out of the car and into the facility once you get there if you need help. If your dad can understand that you will be able to keep him at home longer if he goes to respite occasionally, that may help. It makes him an active participant in his care decisions, and also benefits him greatly by extending the time you are able to care for him at home. If you need to leave for a conference (or vacation, what a concept!) it may also help to remind him that it is not safe for him to stay home by himself for long periods of time. I can't stress enough how respite has saved me. And I realized recently that the more my husband progresses and his needs increase, the more frequently that break needs to be. Getting up once a night is hard enough, but when your loved one is getting up 2-3 times a night, you just get depleted all the faster. A bonus: I find myself using an upcoming respite as a way to get through particularly difficult times. If I know that in 3 months I am going to get a week off, I can power through the latest poopfest and make it  As to where to take him-check your local facilities. Not all offer respite care, some will require a minimum number of days, and others are so expensive you just can't afford it. Shop around-I toured many facilities and you need to have backups in case your preferred place does not have any availability when you need it. The further out you can schedule it, the better. Once you choose the facility, let them know that you will need X days of respite care, with starting and ending dates, so that they can plan and have everything ready (bed, bedding, staff, etc.) You can get a caregiver to come into your home to give you a break, and we did try that, but I found that option to be quite a bit more expensive (and my husband hated it!). Plus, if you need few days by yourself in your house, that option doesn't really work. When my husband was in the hospital a few years ago, I was able to paint the inside of the house-something I never could have done had he been at home, even with a caregiver in the house. I hope you are able to get a break, and soon. |
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| O, lurkingforacure, thank you! I love how you phrased it--yes, I can make it through the current poopfest if I know I will have a break soon. I have started to look for respite places but there is only one near by and one 13 miles away. When I am here with caregivers, I do not really get a break or real rest. He also calls me all the time. Thank you! |
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I am so glad you are looking to get a break. I read once that caregivers should get one week off for every three weeks of caregiving,so basically every month! No one I know can do that, but it gives us an idea of how exhausting this is and what all is needed to keep us going. The best part of the respite care for me is knowing that my husband is safe, being fed, given his meds on time, and if someone calls in sick, the facility has back-up staff. I had more than one experience with the paid caregiver we used for awhile simply not showing up-no phone call, no notice, nothing. What if I had an airplane to catch, or a meeting for work? What if I had already left the house, assuming the caregiver would be there on time? And when I called the agency to let them know the caregiver had not showed up or called, they were shocked, as they didn't know, either. Good luck, you can't get a break soon enough from what it sounds like
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| You mentioned doses every 3 hours. Are you using the ER/CR Sinemet? I’ve found an odd reluctance amongst neurologists to prescribe it for patients with high dose and high frequency needs, yet our experience is that used correctly it makes things FAR more manageable and provides the intended smoother overall results. |
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Thanks for the ideas about different Sinemet types. He has been taking regular during the day and ER at night, Unfortunately, smashing the pills in pudding negates a lot of the benefit of the ERs. Swallowing has become very problematic. After meeting with neuro today, we are doing a trial of Sinemet dissolvable during the daytime. We are also reinstating swallow and PT as well as trying to get a nurse to come to the house. His BP had gotten really low, so the cardiologist increased his Florinef. Unfortunately, that made his BP even more erratic AND pushed his blood thinner levels to a crazy high with an INR of 4.7 so he might have bled out at any moment. Too much drama. Also started discussions about palliative and hospice care. He will not be a candidate for assisted living. |