She has been found wandering around a couple of times outside and when confronted she had no explanation of where she is going or able to tell anyone what she is doing. She gets angry when confronted. She has three sons with two of them being in the local area. She just recently moved into an assisted living center in Overland Park, Ks. Her husband passed last year when they were living in Florida, and in the last few months we lost our mom. She doesn't drive anymore because while in Florida she had a few situations where she got lost. I don't believe she has ever grieved over losing her husband and now I am concerned the stress of losing our mom has affected her also. Her middle son is her POA and is the most involved. She was living with him for 5 or 6 months before moving into an assisted living center close by. She didn't like it and subsequently moved in with her oldest son and his wife and four older children who lived close. However, an incident occurred, where she fell down the stairs while sleepwalking and the oldest son decided he didn't want the responsibility of her safety. So, she has moved into another Assisted Living apartment 5 minutes from the oldest son and 25 minutes from her middle son. She says she hates being there. Her middle son is a truck driver and works nights and it was very difficult for him to monitor his mother and entertain her and make sure she takes her Parkinson's medications when he would get home at 7 AM. She would frequently forget to take them and often would forget to eat. I live 45-60 minutes away. My other sister lives about 10 minutes from her. Her middle son, my nephew, called for advice. He had the assisted living Apartment, bracelet her, which she is not happy about. I don't know if she has been tested for dementia.
I told him that he should do what he thinks is right for her and not be concerned with consequences as long as he thinks things through. Any recommendations?
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It is nice that PoA is concerned about doing what's right for his Mom but he also need to consider what is good for him. He doesn't need to be getting phone calls in the middle of the day (or night) that Mom has been found wandering.
Good luck in this journey
The most important aspect to control this disease is meds always on time all the time. Failure to do that results in motor skills decline, but as meds enhance dopamine levels, it has impact on memory and other functions.
Dementia diagnosis is not done on assumption.
Several specialist, extensive six hour testing, MRI etc.
Sending somebody at 70 to MC potentially for 15-20 years would be cruel.
The progression is different for everybody and unpredictable. But you need formal diagnosis to determine dementia, could be so many factors. Sending somebody to NH or memory care is the last step. Dementia is not common although happens with 30-40% with PD.
Most neurologists and experts do not recommend facilities for Parkinson’s, there is several reason for that, which make sense to me. There is stigma attached to this disease for one and people who can function pretty much properly do well and independence is encouraged, she might be experiencing grief and not expressing or dealing with it, which is completely different matter.
My husband does well with adjustment to meds, he has no dementia. Lots of day programs for PD, socializing, physical therapy and exercise as PD affects motor skills, so movement is important. Proper nutrition and occupational therapy to deal with daily activities.
IMO your sister would do better living on her own, having caregiver will help, the worst thing for PD is taking independence away if there is no dementia, some forgetfulness or clumsiness could be if she forgets taking meds, but, there are simple solutions to that. Of course, falls are common with PD, that is why physio is so important.
She is 70 so I would assume she was diagnosed not so long ago?
My Dad was in Memory Care, the residents had freedom of using the elevator to go from their floor down to the main floor for arts and crafts, music, etc. The exterior doors to the building were managed by a Staff member, as to whom can come in an go out. There were alarm bells on emergency exterior doors. At night, as we all do at home, the doors are locked. The elevator is locked for the Memory Care floor, except for the Staff. There was that sense of security that no one from the outside could get into the building and use the elevator.
The adult sons balancing their Mom's independence & wishes where they can against the safety concerns.
Also willing to change direction as needed (what a refreshing change).
I think your advice is spot on. There will be much the family cannot control - the progression of PD being one. How grief effects your sister being another. (I personally believe grief & stress can certainly have impacts on cognition).
AL seems a good plan here. With staff for assistance, medications & meals being managed & 'more eyes'. Also less burden on the next gen, at busy stages of running their own lives.
The new behaviour of getting lost IS of concern though.
Residents may be free to come & go in AL..? If getting lost is becoming frequent, it may be time for a updated cognitive assesment & a move to Memory Care with locked doors.
Before that big step, what could improve her safety now? Extend her time safely in AL longer?
-Is the bracelet you mentioned for ID only or an alert that warns AL she is leaving the premises?
-Does she have a smart phone that POA could see location?
- Availablity of a hired Aide for an outing 1 X week?
PD does cause dementia as it progresses - but not to every person with PD as far as I have read.
I trust your family will continue to work together to find suitable solutions.
She does have a smart phone but has difficulty using it.
It's also common for a resident to dislike living in Assisted Living, but it takes time to acclimate. She's best off in AL or Memory Care AL where teams of caregivers can look after her 24/7 vs. living with a family member who isn't familiar with her disease or what her daily needs will be. People tend to think it's 'no big deal' taking care of an elder with Parkinson's and dementia when in reality, it's a HUGE deal that they can't manage alone at ALL.
Her sons should not be feeling guilty about providing their mother a safe environment in which to live in. They should visit her regularly and make sure she's tested for dementia/cognizance, and see that she gets regular medical care which is normally available on site in the ALF.
Best of luck.