The parent would stay at for 3-4 months at a time with each adult child. This means the parent would have to move from one residence to another every 3-4 months. Each adult child understands dementia care and would provide everything the parent needs. Just curious if anyone has done this before and if so, did it work out ok for the parent?
At first, this arrangement worked very well. Mom had spent many happy times at my brother's house in the past. As her dementia progressed, she became very disoriented and confused about where she was, and remained confused even when she returned to me and her own house. This confusion continues today.
Depending on the stage of dementia (and the person with dementia), routine and familiar surroundings are very important. Mom does not know who my brother is or why she is at his home (even though we thoroughly explain it to her every time) and then it takes about 4 days when she returns to her home to recognize her surroundings. She does not know me when she first gets home.
I will be looking into other options, such as in-home care, for Mom so she won't be shuffled back and forth.
Now if parent remains in the same location and sibling swapped places every few month, maybe. But I do not see that happening. One will be stuck with 100% of the care.
If could be different for your parent. I would talk to their Neurologist first and get their recommendations.
It has helped that Mom has traditional medicare, with parts A&B &D, which was good across state lines, as opposed to Medicare Advantage or an HMO. But coordinating medical care was an issue.
Also her dementia was mild, no hallucinations, just short term memory loss and confusion.
When we were children, my dad’s mother lived in turn with her sister and her two sons, so the arrangement seemed natural after mom died. My parents had been very active travelers and the pattern of being away from home and staying for long visits was familiar too.
My sisters and I are in NJ, GA and TX. The moves were pretty extreme. Initially, dad seemed to enjoy the variety and looked forward to his next trip. We kept dad’s existing doctors and coordinated his medical appointments with the moves.
Even with mild dementia, travel requires thorough planning. (Avoid layovers and find out which airports have family bathrooms instead of just handicap stalls in the men’s room!) Everyone’s has different tolerances, but moderate dementia made distance travel, even by car, overwhelming for everyone.
By that time, dad’s increasing cognitive and physical needs made it clear he needed to be settled. The sister who hadn’t moved away took over as sole care giver.
Dad has Parkinson’s and Lewy Body dementia, so his cognitive problems are mainly hallucinations and sleep disorder. Even now that he’s in memory care, with prompting he can generally orient. I suspect that someone whose dementia makes them forgetful and confused wouldn’t do well changing homes.
They tried 3 month visits but increased the time spent depending on each sibling’s ability to take care of parent. Usually their Mom stayed 6-12 months with a sibling and there was no set schedule as to when or who would take care of Mom next.
Some siblings could not take care of Mom until later on—after their own children left home or after they retired (so Mom would have been in late 80’s or early 90’s). One of the siblings was a farmer so their Mom did “take a break” and live on the farm for 3 years until that sibling could no longer take care of her.
Some siblings (friend’s aunts & uncles) had a bedroom set up for their Mom and other siblings did not. My friend said that her Grandmother would sleep in her bed and she would sleep on the floor while Grandma was staying with her parents. She enjoyed having her Grandmother visit for such a long period of time.
So some families have “Shared the Care” of their parent and it did work most of the time. Just thought you might like to know.
The situation was not a happy one, and I believe Grandma was quite clear cognitively until she died, but her personality was not very pleasant, and my mother wasn’t inclined Ed to share our very small house with her.
Grandma wound up in a room and board and seemed very happy and comfortable there until she died.
In a more modern perspective, consistency and structure are important for people with dementia, and it would seem to me that moving every few months could be difficult for someone who was already confused.
Here are some synonyms for "demented"; unbalanced, deranged, disturbed, unhinged, and more. Would your mom want you to say she is deranged? I doubt it. I know many people use the word demented, but to me it's very derogatory when referring to some living with dementia. "Living with dementia" or "has dementia" is much more respecful and dignified.
Medicare and Medicaid and Medicare Supplements qualification requirements (such as residency requirements) differ from state to state nor does each state offer the same services or the same level of services.
Before you begin this "Share of Care" process, you need to make sure that:
-your parent's Financial and Medical/Health POA and Advances Directives and Medicare/Medicaid residency meet each state's requirements,
-you determine who will manage parent's day-to-day expenses and bank account(s)/mutual funds/finances and how the adult child that your parent is currenlty living with will be reimbursed for parent's expenses without the money being considered "gifted" to them by Medicare/Medicaid,
-the parent has a Primary Care Physician in each city or state,
-that the parent's health insurance will cover health expenses in each state and that ALL physicians and hospitals, etc. are WITHIN insurance company's network,
-the parent has a pharmacy in each city or state,
-make sure that the parent's prescriptions (especially narcotics or pain killers) can be written by a physician in another city or state if they do not have a Primary Care Physician where they are currently,
-you have contingency plans in place for each adult child's residence in case the parent become ill while at that adult child's home,
-you have contingency plans in case one of the adult children (or their children or in-laws) become sick or injured or that adult child cannot take care of your parent (for any reason),
-you have plans for when the parent's dementia becomes too much for one (or more) of the adult children to handle,
-talk with your parent and agree as to how much clothing and personal belongings your parent will be allowed to move each time,
-you determine with your parent where the remainder of their belongings will be stored (or will belongings be sold so that parent only has the items allowed to be moved).
-have approval from the parent themselves for this arrangement.
Please be aware that people with dementia often need stability and consistency in their lives and that they do not do well with constant change of their schedule or environment. Some people become more confused each time they move to a new environment and the more they move, the longer it takes for the person to adjust to their new surroundings and routine.
Your parent is very lucky that their adult children are so willing to work together to take care of them. Good Luck.
I do not know how health insurance works in the USA, but would your Mum's health care insurance work across state borders?
Dementia always gets worse, unless the person dies of something else while it is mild. What is the long term plan for Mum?
All siblings are on board? I would be too. But ask your parent. You might consider such things also, given this is out of state --medical care? I have Kaiser supplemental and should stay in areas covered by it. POA? How would that work. I think you are thinking outside the box and I love that!