Moving a person with dementia

MNPS

Hello, first post here.  My 69 year old mother was recently diagnosed as having dementia, most likely due to Alzheimer's.  She has been having memory issues for approximately 2 years, with more pronounced issues in the last 6 months (forgetting phone number, forgetting how to use appliances, asking where they are going in the middle of a roadtrip).  My father is 80, in excellent health, and he will likely be her primary caregiver for as long as he can handle it, and I doubt he will want to put her in any kind of memory care or assisted living for as long as he can.  He likes being self sufficient can be fairly stubborn.  My sibling and I each live far away (full day drive or a flight away).  For several years we have been discussing the idea of them moving closer to my sibling as they age, because sibling is unlikely to leave their location, and they have excellent medical facilities there.  With mom's diagnosis, it's made us think more about this, but I have to wonder if moving someone with dementia is a good idea?  She has lived in their current home for over a decade, so I'm concerned that being in a new house will upset or confuse her.  Dad hasn't been letting her drive for at least a year now, so I'm not concerned about her being confused about that.  I know when they visit my sibling, if dad isn't there with her, she sometimes gets anxious.  The choice is up to them ultimately, but moving would make it easier for at least one of us to help out; or should they just wait until things progress and they REALLY need the help, which would also make moving more difficult??  The other concern is dad's age.  We have always assumed dad would pass first simply because he's older, but now it seems like he could very well outlive her - or worst case die when she's in much worse condition, which is another reason we would  like them to be closer to one of us.  I know they have been open to moving in the past, but never really got past the 'thinking about it' phase.  Has anyone moved their loved one earlier in their dementia?  Any advice?  I know they won't agree to go to assisted living yet, so they would likely buy another house.  Finances aren't really a concern, just want to help make decisions that are best for them.  They are very happy where they live now, but not sure how this will change their feelings.  We are going to visit them in about a month after they are both vaccinated for Covid, and hope to help them get a lot of their affairs in order (they have no wills, no power of attorney, etc.) and I want to be prepared to discuss this topic.

LicketyGlitz

Hey MN, I do not have experience with moving my mom in early stages, so I'll leave someone else to give you good advice there. But it is very common at some point in dementia for the person to no recognize their home and be anxious about their surroundings regardless of how long they have lived in their house. That will come up as an issue at some point anyway so I would move that off your backburner of concerns, and just think of it as something your family is going to go through eventually.

If it was my parents I would encourage my dad to make the move. My father was also very self sufficient and didn't want a bunch of people poking their nose in him and Mom's business, but 4 years into the diagnosis he was drowning emotionally and physically. If our fathers are similar at some point your dad will realize this is not a journey to take on your own, and if you are all closer that will be a blessing. I don't know if my dad would have ever accepted help outside of my sister and I because he died of pancreatic cancer, fast - from diagnosis to death was three weeks. Which is when I moved in with my mom, and my sister and I split up the 24/7 care.

Which leads me to another suggestion, make sure both your mom and dad have POA's done with you or your siblings as 1st or 2nd choice. If you dad is your mom's sole POA and he dies first it's a helluva uphill climb to access finances and SS and all the other personal business if that is not in place for your mom.

Good luck!

Cynbar

I haven't had any actual experience in this, but I would encourage them to move now, before things get worse. Your mother may have some difficulty adjusting, but that will only get worse as her dementia increases. The task of their children managing this from a distance would be a nightmare. Your father could run into medical challenges at any time, you would want someone close by to help him navigate that and make plans for both of them. There should be one of you who is keeping an eye on the situation, making sure they both are taken care of of, hiring and supervising caregivers if that becomes necessary. Being the primary caregiver for a dementia patient is mentally and physical exhausting for a much younger person.  He is going to need your support, more than phone calls and occasional visits. There have been a number of threads here about long distance children who didn't realize how bad things were getting, just heard phone assurances that everything was fine when it actually was spiraling out of control.  It sounds like they were willing to move when it was discussed in the past --- remind them of this, talk up how wonderful it will be to have them close, and get a plan started. It's wonderful to honor your dad's independence, but most children of aging parents find they need to reverse roles a little bit and become more forceful in pushing a plan that makes sense for their safety. It's a hurdle to get over but it can be done.

abc123

My parents moved 9 hours away about 15 years ago. Mom is now stage 5/Alzheimer's. I'd give anything for them to move back or at least move closer. Out of 3 kids, I'm the only one who tries to help. Driving alone for 9 hours to get to them is not fun. My advice would be for your parents to move as soon as possible nearer to family. If everyone puts a positive spin on the move, I think your Mom will be okay. I wish you luck.

harshedbuzz

BTDT. 

My parents split the year between the beach and Florida which is a 4hr/plane ride away from where I live. They would say they were "private" in their relationship; I would call them sneaky. Dad was diagnosed in midstages after years of me pestering my mom to get him evaluated. What finally caused a sense of urgency around this was dad's inability to recognize or advocate for my mom when she became dangerously ill. Mom developed an autoimmune liver failure. I knew from daily calls that she wasn't feeling well, but mostly dad was reporting that they were getting a divorce because she wasn't taking care of him. At no point did he mention that she was the color of a school bus. A neighbor ran into her and transported her to the ER; once she was admitted the hospital called me as one of her emergency contacts. I flew down to FL as soon as I could get a flight which was a challenge given that it was Presidents weekend and a popular time to head south. 

When they came north for the summer, dad had a psychotic episode which led to his diagnosis. He was hospitalized and then went to rehab for 8 weeks during which my mom agreed to move. We moved them into a senior apartment which wasn't a great fit. A few months later I found a lovely home in a 55+ community not far from me and moved them while they camped out in a nice hotel nearby. I chose the community to be a good fit for my mother both before and after my dad died. She's in stage 8 now and while she misses FL and the beach, she's happy to have her grandkids nearby and feels secure knowing we're looking out for her. That, btw, is kind of a fulltime job at times. 

Some random thought specific to your situation:

This is your dad's call to make. So I would make the pitch to him. He may feel strongly that he wants to remain in his home, not just now but after. It's a big ask. If he says "no", you can explore options that might help him with the hands on aspects of caregiving- a day program, respite, HHAs, cleaning/meal delivery services. 

I tried mightily to get my mom to agree to a CCRC instead of a home. I don't know that dad would have been accepted given is cognitive shift, but I know people for whom this worked really well. The couple started out in an independent living apartment or cottage, with the PWD transitioning to AL for MC and finally the SNF. They could still attend activities and meals as a couple. One caregiver used the SNF for his own care after surgery because he didn't want to burden his children. 

You need to get the legal paperwork drawn up and also get your dad to share the financial aspects of their household with you in order that you could step into the caregiver role seamlessly should your dad become ill, disabled or die.

A full 1/3 of caregivers died first, so you need to have a Plan B you can execute on the fly should something happen. That means you are primary agent for dad/secondary for mom on health care and financial POAs. If your mom won't be moving into your home, you will need to investigate MCFs and SNFs both where they are now and where you live. 

Be aware that the ability to physically move a person in late stage dementia may close. Some MCFs will not accept residents past a certain point and the actual move can be very expensive if an ambulance is required.

I found it easier to move my parents first and then deal with their homes once they are settled. A good realtor is a godsend around this. My mother insisted on telling dad about the sale of the first house against my wishes and we paid a price in terms of aggression and agitation. We created a fiblet around renting the place in FL to avoid a repeat. After a time, he thought he was in FL anyway which was great unless hurricanes were forecasted. I eventually put parental controls on TWC.

I don't really think the moves- we moved dad from FL, to MD, to the hospital, rehab, an apartment and home in a 6 month period- really impacted his rate of decline. And if it did, it was a reasonable price to keep my mom well and supported. I knew I was going to lose one parent to dementia- I wasn't willing to sacrifice the other as well. A lot of people here report that in the late stages their LOs are confused and lost in their own homes anyway.

YMMV.

HB

AZGirl

Does anyone have experience with using a professional medical transport for moving people with Alzheimers/dementia?

My parents both have dementia:  Mom has Alzheimers, Dad has some form of dementia--both his short-term and long-term memories have almost completely faded.  He knows who I am (she doesn't), but neither really know where they are.  She is in full memory care and he is in assisted living in the same facility (which has been an excellent facility, by the way).  Both are basically incontinent.  I am the only child and living relative and have both medical and financial POAs for both of them.  But finances and difficulties in long-distance care now necessitates moving them to where I live.

I live in Tucson and they live in northern Virginia.  There is no way I could drive them to Tucson, no matter how much help I had.  3-4 days on the road, with hotels and stops is inconceivable.  I am also very nervous about transporting them on a commercial flight, as there are no direct flights to Tucson, and it is quite possible that one or both of them could have a full meltdown somewhere along the way, possibly resulting in one/both of them being denied boarding the aircraft.

We are fortunate enough to be able to afford transporting them via medical air transport (what we would save in care costs would be recouped in just a matter of months).

Has anyone used such a medical air transport company to make such a long-distance move?  I haven't been able to find many independent reviews of any of these companies, which is always a bit concerning.  Any guidance/thoughts would be most welcome!

Rescue mom

Azgirl—I don’t know anything about your question. But you will get more and better responses,if you make this a new, separate question. Now you are “hidden” at the bottom of another different matter. Look at the top of the page, toward the right, you will see a green box that says “add topic.” Click on that and start your question.

robinja

My Mom and Dad moved when my mother was in the early to middle stage of AD. It was mostly positive. They lived in a rural area and Mom was unhappy there after the doctor told her not to drive anymore. She also couldn’t cook anymore and they were a long way from restaurants so their diet was atrocious. My sister-in-law found a wonderful living arrangement closer to family that got us through 2 years. A small assisted living facility owned a condo next door and rented it out as independent living, but they provided meals, house cleaning, and activities. It was just what they needed at the time. My dad wasn’t really ready to move, but it was a reasonable compromise. This particular situation was kind of a one-off, but I know there are some senior communities that have a variety of living options. 

In hindsight, the only thing I would have done differently would be to not have Mom involved in the actual move. That part was stressful for her, but I’m not sure we could have gotten away with moving without involving her.