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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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Is the bracelet something that alerts the home she’s in if she crosses a threshold leading outside? She needs to be in a restricted home. It won’t help moving her to one of her sons unless they can afford 24 hour nursing care because again, if she walks away, it could be life threatening. It sounds like she needs a locked facility but lots of visitors. If all the people you mention saw her at least once a week maybe she would get used to being in the home and it would become familiar and secure feeling to her.
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Reply to Meauxg12
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Her children, especially the one who is now carrying most of the burdens of decision-making, just really need your support. It is an overwhelming job to try to make a parent happy and safe. Frankly, they will never be as happy as they once were and will grieve for that life that they once had. The children can get as much advice as they can from the doctors and the people where she is staying, and just have to do what they can for their parent. It does sound as if Memoray Care would be the best place for her, and for all of the family's sakes. Ultimately, they need to know that their parent will never be as happy as they once were, their life will never be as it once was, and we, the family, have to accept that. You, the sister, know that her children love her, you love her, and all are trying their best. None of us are experts, nor are we miracle workers. If only we had magic wands, right? You know that she is loved, know that she is cared for as best as humanly possible, and know that none of us have a Disney-ending old age. My mother is still grieving deeply for my dad after 3 years, and is still upset with him because he promised her they would go to Heaven together. I wish you all the best, and there will be a time when acceptance, maybe not on her part, but on your, the family's part, that this is as good as we can do.
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Reply to asfastas1can
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Her POAs are responsible for making decisions about medical and financial matters; you can only advise. If she is a "wanderer" she needs 24/7 care in a safe place. Memory care units in assisted living facilities set off alarms when residents approach the exits. If your sister's financial situation allows her (her POA) to have 24/7 in-home caregivers, it is safe for her to be at home. Otherwise, she'll be safer in a memory care facility. These facilities have structured schedules and don't allow freedom of movement outside the unit, and for this reason, some residents may not enjoy them as much as being at home. But they are this way for safety. In time, she may adjust to being in a facility. Sadly, with dementia, her mental and physical condition are likely to decline. Her POAs should plan for this.
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Reply to NancyIS
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BHrzenak: Most likely your sister requires memory care facility living.
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Reply to Llamalover47
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Seems she needs to move to memory care since she can not remember to take her medications and is a flight risk. A memory care unit is usually a locked unit so she can not wander off and staff will make sure she takes her medications on time. Advise nephews to look into facilities that can "phase" her care from independent living to skilled nursing to memory care. Ask the facilities and her doctor to evaluate her for placement in the appropriate level of care. Make sure that he finances are used to calculate payment of services.
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Reply to Taarna
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Because of the wandering situation she does not seem safe in a regular Assisted Living however, I think the first thing that might be done is to get her fully evaluated by her PCP and a neurologist to determine her current cognitive status. PD does often lead to dementia and so at some point in her future a secured memory care unit might fit the bill.
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
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Evamar Oct 3, 2022
Parkinson does not necessary lead to dementia, only 30-40%.
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Parkinson is not as simple and many symptoms you describe could be related to not taking meds regularly.
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.
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Reply to Evamar
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Memory Care for her - group appointment online with a Geriatric Psychiatrist for you and the middle son.
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Reply to ConnieCaretaker
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Thanks for the info.
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Reply to BHrzenak
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Thanks for the info.
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Reply to BHrzenak
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Thanks for the info.
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Reply to BHrzenak
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Her son has to do what is right for him.
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?
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Reply to Evamar
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BHrzenak, I am really surprised that your sister's facility hasn't called the Power of Attorney or whomever to recommend that she needs a higher level of care. Also, it can take months for someone to settle into a new home, no different then us whenever we move.

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.
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Reply to freqflyer
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BHrzenak Sep 28, 2022
Thank you for your response.
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What a success story so far, family all working together.

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.
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Reply to Beatty
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BHrzenak Sep 28, 2022
Thank you for your response. The bracelet is an alarm bracelet that activates if she gets within a few feet of an exit. I was a little generous with the family situation. The sons actually, don't get along at all.
She does have a smart phone but has difficulty using it.
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This is very distressing for everyone, but it’s clear that she needs the utmost care for someone in her condition. No testing for dementia needs to be done immediately because she’s already demonstrated it - a lot. Lockdown is necessary, and it doesn’t matter what she wants anymore. It’s sad. Get her into a safe place where she can’t wander and let her adjust. Then you will all have done the best you can and can move forward from there.
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Reply to Fawnby
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lealonnie1 Sep 27, 2022
Except 95% or more Memory Care ALFs require a formal doctors diagnosis of dementia or Alzheimer's in order to accept a resident into their care. The facility can't just take a new resident based on a family members suspicions or relaying stories of their odd behaviors.
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I'm not sure what your question is? Your sister is obviously showing serious signs of dementia by getting lost and wandering away. Her son is unable to care for her if he works a lot, and she needs 24/7 supervision in a managed care environment where she'll get her medication on time, meals served to her, and a safe place where she can't wander. However, it sounds like she needs Memory Care Assisted Living vs. regular Assisted Living, and that she also needs a cognitive evaluation by a Neurologist or at least a consultation with her Parkinson's doctor. It's common to have dementia along with Parkinson's.

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.
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Reply to lealonnie1
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She is in a safe place and will be taken care of. Her memory issues are a symptom of progressive disease. You just described moderate dementia. Living alone is no longer possible. Sure it sucks that she does not get what she wants. However if she did get what she wants, then that means her sons' do not get to live their lives. The unseen expense if she got her way would be thet someone loses their wages and their retirement, plus possibly their health.
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BHrzenak Sep 28, 2022
Thank you.
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Your part about the medication and younger son is confusing. Assisted living usually does medications. At Moms, residents were not allowed to have medications in their rooms. I think if sister is in an AL that she needs to be in Memory care which is a lock down unit.
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