Has anyone shared the care of their moderately demented parent with a sibling who lives out of state?

I share care of my 90-yr-old mother with my younger brother. I stay with her at her home two weeks out of each month, then I pack her up and take her to my brother's house about 15 miles away for two weeks.

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.

This is a person with moderate dementia. They do not have the ability to reason or problem solve. This is a terrible idea and will be very hard on the parent. Each move will be another decline and more difficult for the siblings each time the environment changes. I cannot imagine such a situation working well for anyone involved.

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.

I haven't shared that type of responsibility but I did deal with my father having dementia and read a lot on here and other places.  But I can tell you, at some point him changing around every couple months is not going to work out very well.  It will be very hard on them mentally (on top of the dementia) because they will become scared, etc.  Is there some place in between where maybe your parent can be placed in a memory car place?  who has the POA?  dementia patients don't handle change very well.  maybe someone else on here has some better suggestions, wishing you well.

Yes my sister and I share my 91 yr old mother’s care although she gets her most of the time because where I live in the winter it gets very cold and so she goes back down to Florida where she can stand it. She’s in about stage 5 but she knows she’s losing it....can’t remember this place when she’s gone and can’t remember my sister’s when she’s here with me. Works out ok for both of us now but we’re just about done with the back and forth. Travel is stressful and we’re 3000 mi. apart. From experience with my grandmother who lived with us for 10 years growing up that when they become completely demented nobody gets any sleep because days and nights get mixed up and you might as well kiss your life goodbye. It’s too much for me and my husband is ready to divorce me. We’ve been at this with aging parents and sick relatives for 15 years while trying to juggle our own lives. I think the constant moving adds to the confused mental state personally and wish mom could have gone into assisted living 5 years ago. Having an aged loved one in your care 24/7 isn’t good. You can be a much better daughter/son with cheerful, regular visits where they can stay in one place (and the heat can be on constantly at 80 degrees).

Imho, this may not work because the parent with dementia needs consistency. Prayers sent.

Most dementia or alzheimer's patients need consistency. Change in physical, emotional or enviroment areas greatly affect their lives. A cold or hospital stay, move to a nursing home, seeing a new doctor; all these things can increase their chance of the disease going to the next level. You would be shocked how one stress item can cause them to rapidly jump from moderate confusion to completely not knowing who someone is or where they are.
If could be different for your parent. I would talk to their Neurologist first and get their recommendations.

As a retired Geriatric Nurse Practitioner, I must agree that it depends on the level of dementia. The more severe the dementia, especially when the person is alert the more disruptive and unsettling a change in environment becomes. People with dementia need consistency and routine--people, environment, schedule. Traveling with a person with dementia is a challenge in itself, as pointed out earlier. Who takes the person to the bathroom if they are a different sex? How do you get the person to eat strange food in a strange place? Air travel would definitely be the trickiest. My mildly demented father almost had a meltdown in an airport on his way to my son's wedding because the plane was delayed for several hours--and he was with my mother, my aunt and uncle. He could still care for himself with BR and meals, but he had no patience with "sitting around" which was totally different than his original personality. It would be a totally different situation if the person had no reaction to people or to their environment--the final stage. Traveling would certainly be a challenge but might not be as upsetting as in an alert person.

Two of my sisters shared the care of my Mom. They are maybe 60 miles apart, but in different states. The transit time is only an hour and a half, or two hours, depending on traffic. They alternated taking her two weeks at a time. This worked for about two years. Now she is staying with one and the other comes to help a few days at a time.

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.

This approach worked for us for about a year and a half. We communicated frequently with conference calls and maintained shared dementia and medical logs. But as dad’s dementia progressed the moves became disorientating, and then disturbing.

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.

Yes we are doing it now. My MIL will get upset and want to go to her daughter's house about every 3 days. Then when she is with her daughter it's her wanting to come back to us. This is 16 hours one way between us. She gets confused not knowing where she is at. I'm not sure if it's the right thing to do or not. I wish I had better news for you.

You and the siblings need to start working on a plan to keep her in one place. Moving creates more confusion. It's not that mom would not get appropriate care, it has to do with keeping her in familiar surroundings.

Moving around to different places may be difficult for your parent. My mother has advanced dementia. She used to be a person who loved change, trips and travel. As the dementia progressed she had more and more difficulty whenever her environment changed. As mentioned below, she couldn't think of her new apartment as "home." She'd get confused trying to find her room. When her dementia was milder the move from independent living to assisted living in the same facility caused her anxiety and difficulties. Trips to the doctor got difficult, she didn't like the travel. She hated when she had to stay in the hospital after falls. (We eventually changed her care to hospice type care with no hospitalization and no doctor visits). She doesn't really recongnize me as her daughter and when I visit, she seems very comfortable with the aides she sees all of the time. Also remember that dementia can get worse over time and that there may be good and bad days. You have to take it as it is.

The worse thing you could do for a LO with Alzheimer's or dementia. Routine is vital for keeping them on as even a keel as possible. I know folks who have had family members come to the LO instead when possible. So much easier for the LO. Lord knows their world is in a turmoil in their mind as it is. Anything we can do to help alleviate that is a blessing for all involved in the care of your LO.

Constant moving would be hard on her. An example, I took my dad to Louisiana to visit with my sister. We stayed two weeks, on the way home dad kept asking me if we were going home. When we got home I watched him decline in his memory and ability to do things for about three weeks before finally leveling out. Each time we went anywhere and spent more than a day I would see a decline. Dad had been diagnosed 6 years before the trip to see my sister so maybe it was a part of the natural process of his Alzheimer’s but I believe I wouldn’t move her around so much.

That was supposed to be the plan when my mother moved in my house. Never happened. Then one day I had a sister tell me she's my responsibility now and that was the end. That's when I realized that I could not do this alone nor would I even try to keep doing it alone. So I moved my mother into her own small senior apartment... that was the best thing that ever happened.

I was talking with a friend about your question. She told me that while she was growing up, approximately 1985 to 2003, her parents and her father’s nine siblings took turns taking care of their Mom (friend’s grandmother) for 15+ years (while grandmother was approximately ages 75-93). 

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.

Even if a parent were to agree with such an arrangement, it seems as though it would be an awful lot to ask of them. They'd have to continually get used to different surroundings and sets of different people while their mental state is already spiraling downward. Seems like they would have no sens of belonging if this were to be done. It would probably be better if there were a place where your mom stayed and others took turns coming to stay with her instead of uprooting her every quarter. I will say though that that is a very generous thing for siblings to offer. You don't usually find ones that are willing to cooperate this way. Props to all of you.

seniors do better living in surroundings they know..that is why my brother took care of my aunt, it was hard enough moving her to assisted living but she adjusted and knew her surroundings..i lived 300 miles away and travel for work every week almost. it worked out best for her..

My mother and father alternated with my aunt in taking care of my grandmother, after my cherished grandfather died.

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.

Personally, I wouldn't favor the constant change in environment for your mother. It's admirable that the family is willing to participate in her care, but it'll be disruptive and confusing for her. You say she is MODERATELY "demented" (see below). What does that mean? On the dementia scale of symptoms, where is she? If she's moderate now, what happens when she's more advanced? Which of the siblings is going to care for her when she requires fulltime care? I would leave her where she is until that sibling can no longer care for her then start looking at care facilites.

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.

Agree with the points made about: 1) asking what she wants (and add to that what is realistic/doable for the caregivers), 2) she's probably on Medicare, but does she have supplemental insurance that isn't portable? Or in a limited network? and 3) this arrangement works until it doesn't so, indeed, a longer term plan should be discussed with her now so she can have a say in how she hopes her care will look like in the future. If she ever requires Medicaid, in which state is she a current resident? Does she have to live 6 months and a day in one state in order to be a resident? Qualifications differ from state to state so this should be researched to avoid distressing surprises. I think house-hopping sounds wonderfully fun as long as she likes it and it works for her hosts.

I have not heard of adult children willing to take turns having their parent in their home like you plan to do. If I understand correctly, your parent will live in 4 different cities and 2 different states within a 12 month period?

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 would be concerned about how far the out of state sibling is from the parent's Primary Care Team.

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?

How does the parent feel about the move? I mean they might LOVE that change of scene and people and they might hate the idea. Because you know, what about my "stuff". How can all that be moved? For me I think I would love it, and if I got tired of someone at least the time would be limited. But I can see others might hate it. What does your parent say? I just heard a program on NPR where parents who were elderly said "Why don't they ask ME what I want? Why do they discuss it with everyone else?"
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!