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Topic Webinar on Lewy Body Dementia Go to previous topic Go to next topic Go to higher level

By flowers12 On 2017.07.04 20:30
This is a very interesting Webinar on Lewy Body Dementia

LBDU Webinar Series: The Reality of LBD - Hallucinations & Delusions & How to Manage Them

By Daisy123 On 2017.07.05 08:01
Very interesting webinar. Sadly it describes exactly what we are living at the moment. I haven't been able to post for ages as every day my time is taken up completely and every ounce of energy I have is zapped.

Along with this horrible new reality that has been forced upon us, all Dh's motor problems, which had been "relatively" well managed, have started to slide.

I have reached out to our primary care doc, neurologist and psychiatrist to advocate for help at home, for me as much as DH as I'm struggling to cope and won't be able to go on alone for much longer. But the official cogs turn very slowly so I will wait and see. 2 prior refusals as incredibly Dh could still "showcase" when the need arose although this talent too, is declining.

But I still look in every day and wish everyone the best on their respective journeys. Take care.

By flowers12 On 2017.07.05 11:34
Daisy, I've had such a stressful time these last few months trying to get help. The neurologist had suggested long ago that I get a Home Safety Evaluation from an agency to help identify what would help us in our daily struggles of mobility issues. This would be covered by Medicare. I ran into obstacles with the first Home Healthcare Agency because they had to have the Primary doctor issue the order not the Neurologist. My Dh's primary doctor is a real jerk when it comes to ordering anything to do with his Parkinsons and says the Neurologist must do it. I'm working on finding another Primary doctor. The criteria for this service is that the patient be home bound, unable to care for themselves if no one is there to assist them. Of course this is the situation for my DH. The Caregiver Agency found another place and we finally after two weeks got the ball rolling. We now have a nurse once a week to check his vitals, a Physical Therapist twice a week and a Occupational Therapist twice a week. This will only last for about 6 weeks then Medicare money will run out. Having them come to the house is a relief because it was almost impossible to get him in and out of the car to go to PT last year.

My Dh's mobility has drastically changed over the last two weeks where he can't stand up on his own at all. I'm hoping that some PT may get him going again but not optimistic about it. We have a walker now and a chair that both are used always now. I'm not happy about the suggestion that we get a Hoyer Lift because it seems like giving up.

Having a caregiver two hours a day 3 days a week at $25 an hour for this last 3 weeks has not been as helpful as I thought. I guess it will take a while to get the routine going but I seem to spend as much time overseeing as they are here. It's exhausting too.

I know how your daily life goes as mine is the same. Sometimes I don't know how to survive this struggle but take it hour by hour, day by day.
Sending you a BIG HUG and will keep you in my thoughts and prayers.

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