Help me help my mom while she helps my dad!
July 30, 2014 3:45 PM Subscribe
My dad has Lewy Body Dementia, and my mom is his primary caregiver. He is very disabled at this point, and it's taking a toll on my mom. I need suggestions that I can give her, and internet searches are leaving me overwhelmed!
My 76-year-old father has been unwell for several years. First we thought it was Parkinson's, but a few months ago he had an official diagnosis of Lewy Body Dementia. He is mostly bedridden, although he does gather up strength to move around the house occasionally. He is most definitely a fall-risk, and has had numerous (non-serious) falls. Lewy Body has wreaked havoc with his internal clock, and as such he sleeps for extremely short periods of time and is awake more than he is asleep (so, asleep for 45 minutes, awake for 3 hours). He has visual hallucinations, which sometimes play into his sleep issues. He is fairly demanding and needs a lot of attention. My mom is his primary care-giver, and is not sleeping enough. She is 74, and I know it's just too much. I live a little over an hour away and try to visit at least once a week to help run errands (she can't leave him alone), but I have 3 small children and can't really sit with my dad to allow my mom to sleep for any decent length of time. My brother was staying for a couple of days a week to give her some respite, but he had to cut his days down to about one a week. There is a fellow who comes to give respite for 6 hours every other week, but my mom won't sleep while he's there. My dad was in a rehab facility for a while, but when he tried to become mobile they asked him to leave because of the risk of falling, so my mom brought him home and has tried to make due as she can. I'm super worried for my mom, and wish I could do more! She has no internet access, and is rather closed off to in-home nurses and such, as she feels a bit uncomfortable with strangers in her home. I need ideas for where to start looking for options my mom might be comfortable with. If it's any help, my dad is located in the Eugene, Oregon area. My mom has spoken with a social worker and with some of the people at the hospital, but the impression I get is that it's just too much to figure out right now.
Other things to note: my dad can't take sleep aids due to his disease and other medication interactions. We've checked with his neurologist, and some can worsen the problem or cause more intense hallucinations, so we avoid a lot of medications due to that.
Any suggestions you might have would be so appreciated! I am incredibly new to all of this, and have no idea where to begin.