LO with Parkinson's and progressing hallucinations. Does the caregiver share their own medical issues with the LO?
I am a long distance caregiver, legal and medical POA for my brother with Parkinsons. He is in a care facility. He is in Hospice Care. His hallucinations are increasing dramatically. We live in different states.
I was recently diagnosed with an illness that will ultimately have a good outcome, but treatment will keep me from traveling for some time. I had been visiting once ever 6-8 weeks. We have a local relative who visits him, and I have hired someone to visits 2 or 3 times a week. Because of the Hospice care, he receives regular Nurse and Aide visits as well.
Just last weekend he called to tell me that our mother had died. He was with her 15+ years ago when she passed. I usually go along with his hallucinations, but this time I did tell him that I knew our mother had passed. This is just an example of the hallucinations. My question is should I tell him about my own medical issues and the limits it will place on me? I'm concerned that it will make him fret and/or that once told he will forget and I will have to repeat it over and over. I don't want him to feel neglected when I don't visit. I will continue to call him daily by phone. Sometimes he answers, sometimes he doesn't.
I also wonder if I should share this personal info with his Hospice team or the caregivers in the facility where he is living. I don't want his care to change because I am not there to check on things. Has anyone else had a similar situation?
I'm specifically asking the PD forum because of the hallucination aspect.
5 Answers
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Any therapeutic lie will do, keeping it light and not something that may worry him or cause anxiety or distress. Hallucinations from Lewy's or Parkinson's in my opinion, are greatly exacerbated by stress.
I don't know what you mean by your being unable to visit for "quite some time", but you already are not seeing him sometimes for two months. So telling him this is going to put it off for four months at least.
If his memory is poor you can even say that you WERE there.
I would discuss with admins where he is, making certain they don't pass on your difficulties. They can back "your story" and be reassuring.
You can also be honest and "keep it light" as you have with us. Just say you will be fine but it will take some time. His sense of time and space may already be so out of kilter that none of this will matter a whole lot.
Wishing you the best and speedy healing.
Tell aides and hospice staff.
Hard to say if hallucinations would get worse if you told me but generally stress increases progression of Parkinson.
My husband with Parkinson’s has some hallucinations, seeing people by his bed, one time white cat.
Neurologist advised melatonin for sleep as he screams, talks loudly, which is not him at all, he is rather quiet person.
Wishing you speedy recovery!
I would share with Hospice and maybe the facility that due to your health you will be unable to visit as often. You do not have to share details.
You could request from Hospice that a Volunteer stop in and visit a few times. This would be in addition to the person you have hired. (Volunteers are available through Hospice it is a Medicare REQUIREMENT that Volunteers are used for any number of things. The Volunteer hours must equal at least 5% of the Hospice providers total patient care hours.)
I do hope all is well and you are able to resume your normal activities soon.