Upcoming Move

RobertH

New member, been dealing with this for a few years now.
Bit of question  / vent.

Background : Me & DW have been together for about 30 years, she's from a large family, me smaller family.  She's only mid stage right now, mostly functional, but can get confused easily if lots of people are all talking to her at the same time, that raises her anxiety & confusion.  Evenings are good for the most part, some days we get the "I want to go home" and I'm learning how to redirect, or just saying "home is upstairs" works most of the time.

Issue. Balance issues are starting to increase, few stumbles, slips on bottom of stairs, few slow falls in bedrooms. No injuries to date.

But we're in a 2 story house in California (Rental) and it's going to be unsafe in a few years when the balance issues increase.

Solution We've both agreed to. is Moving

We've spent the last few years looking around areas, only 4 states are real options with any form of family, Most of the family is in CA, foster child in FL, my Sisters in WA / NY  

With housing cost, support, medical support, we decided on FL
Wife is looking forward to the move (about 5 day drive) And she's been to FL to visit Daughter 2 times (1 week each, once by herself, once with me) and enjoyed her time.  And found a lovely single floor house, large walk in shower (will hold chair & 2 people easily) quiet area in Citrus Springs.  
So we decided to go for it. and put in an offer 

Then All *^)^ hit the fan.  Not with the wife, but local family / local children 
that causes anxiety when they all start questioning everything about the move and why so far.

After setting up eldest daughter as secondary POA if something happens to me that seems to of helped clear up most issues.

We've gone for hour drives multiple times before, and such, and wife handles drives without issues so far.

So we're looking at moving next month and I'm wanting her to get settles before this disease progresses further, and I'm thinking the sooner the better, yes we could keep renting here for a few more years with the risk of falls, but when in progresses, any move would be harder on her later than it would be now.

Trying to find advice for both easing here anxiety during the move & how to help the family realize that this really is best for her & me, both in the support available in FL vs CA for her & me as the caregivers.

RobertH

Also: Job, I currently work %99.9 remote, and my job has no issues with that being %100, as is I'd only go in 1 or 2 weeks a year where I'd travel to WI and have family watch the wife while gone.

Quilting brings calm

We did a two day drive move back to our home state with my mom.  I totally understand you want to be near the people that will help the most in the future,  no judgement from me. 

Take people with you, even if they travel in a separate car.  Your spouse will become confused and disoriented. She will sundown even during the day on the long drive. she will be lost and will think you are driving in circles. She will most likely voice her opinion and frustration as a  long stream of consciousness the entire time she is awake.  It will become frustrating for you to listen to for hours at a time. Expect her to be least one stage of dementia past her normal while on the trip and for a while afterwards 

You will need help at rest stops, restaurants, rest rooms, gas stations. You will not always find family restrooms   A female will need to go in with her to normal restrooms.  Someone will need to be with her while you use the restroom or when you need to pay for gas, go to the counter to pick up your meal, etc

Make  sure she is in the back seat WITH the child locks on. This is a must.  We had my mom in the back seat, but did not have the child locks engaged.  She opened the door at speed on the highway because she wanted to walk the dog.  Luckily my spouse got the truck stopped before she attempted to get out. 

Hopefully the people going with you will be family members.  I would suggest you share a hotel room or adjoining rooms with at least one other  person.  You will want to put her in the bed farthest from the door and you will want to put a chair in front  of the door.  In her confusion, she may open that door and wander while you are sleeping.  More people to hear her attempt to do so is a good thing.  

Good luck.  

Joydean

RobertH, hi and welcome! I have no advice for you on moving, but I just wanted to welcome you. You have come to a very good place for help and advice or to just vent. The wonderful people here will share good advice from their own experience’s. True fully I’ve learned more here than I have for my dh’s doctors. Each person with Alzheimer’s is different in many ways and yet the same. You are right about moving now in early stage than later. Best of luck to you and your dw.

Rescue mom

It sounds like the move to Citrus Springs, as the location, is a done deal?? Did you spend much time there? I live in S.FL for decades, and somewhat familiar with that area. I’d advise looking at (or for) what kind of dementia-related services and health care is close by. 

Florida ranks near the bottom in most rankings of state services/assistance for seniors/dementia; that said, you never know what you may find where, and you may be able to hire private help there, for less than charged elsewhere. 

The advice above is good for any long car trip.

ButterflyWings

Robert - welcome, we always wish you did not need such a group. However you are in great company here to share experiences and understanding support.

In addition to the really spot on advice above, I wondered what (if) your LO has a specific diagnosis? And a neuropsych who might be able to either follow her progress after you move, or refer to someone in your new location. The medical team of advisors/prescribing Dr is super important as is having some in home help as soon as you can arrange it. 

It sounds like family may not be really clear how dementia works (?) if they are bombarding your DW with questions and expecting her to respond as if her brain was not failing her. That is stressful and can only be improved on if they are open to learning and applying best practices for PWDs. One major best practice is to support the decisions of the primary caregiver (you). The article by Jennifer Ghent-Fuller on "Understanding Dementia" can be downloaded free and would be really good to share with family and friends if they are willing to read it.

Lastly, I had a LO who began slow falls in the bedroom or other rooms and turned out they were little mini-strokes, before she actually had the larger one that changed our lives and her care needs completely (paralysis, in-home hospice for which I was the primary caregiver the last months of her life). She was much older and did not show signs of dementia except I now think maybe some vascular dementia showing up the last year or so (almost 100 y.o. so it was not a surprise that there might be some capacity loss especially with the recurring TIAs).

Not trying to scare you at all. Just wanting to make sure she is checked out as the balance and falls can definitely be dementia progression or may be a sign of something that meds can help minimize. You sound like such a thoughtful husband and also a planner. Dementia can make it tough to plan, but as long as you're flexible, having plans B and C make this life so much more manageable.

QBC - I had forgotten about the endless (anxious) chatter of my DH on earlier road trips where he truly thought every sign he read meant I was taking him to the city listed on the road-sign and was certain I was either lost or kidnapping him. That led to not getting back in the car at pit-stops a couple of times and other "adventures".  

Ed1937

Robert, welcome aboard. Sorry you have a need to be here. I was hoping Rescue Mom would post on this. It might not be that important now, but it seems there are many other locations that would be a much better fit when it comes to care options, including placement. This could be a very important consideration for you. I hope you can make a move that will be appropriate for your situation.

Rescue mom

Ed, I am super-curious if he already bought/committed to this place.  If so, not much to say except temper expectations for any elder/dementia state services.

RobertH

We're committed to this place at this time, and not looking for long term care at this time, when needed we'll be using in home care for the most part, her wishes are to NOT be put in any form of home, and she is looking forward to the move and likes the new house, the layout is going to work great with her. Currently the only external care she needs is more social interaction (looking at getting her reconnected to the Red Hatters)

Our daughter that lives about 1.5 hours south was a CN and did some work as a care giver for others with dementia already. (and cost in Florida even for in house caregivers is about 2/3 the cost in California) 

When talking with her about having a family member also drive with us, she's not really thrilled on that idea currently, I'll still bounce it off her family and won't deny anyone the trip if they wish to come also.  

We're on a mix between Early / Middle.

She's still able to dress herself, no bladder / bowel issues, still sleeps well through the night, no wondering even.

harshedbuzz

Hi Robert-

I would have some concerns about the move.

Aside from the logistics of getting to FL from the west coast, your situation could have some unintended down-sides.

Some random thoughts-

1. While it is prudent to move to an area with a lower cost-of-living given the high costs of dementia care going forward, you may find that some of the issues Rescue Mom mentioned will impact your quality of life. It does sound like this is a good window in which to make the change. 

In general, Florida is not a great state in which to access services for those with dementia. There's not much in the way of support or funding to assist family caregivers.

Specifically, to that area of Florida, the medical care available may not be up to the standard to which you are accustomed. My parents spent half the year not far from there near Leesburg. TBH, I was appalled by some of the care they received and the cavalier attitude of some of the professionals delivering it. I understand care is better further south, near Tampa and around Gainesville. When I moved my parents back to where they raised me, their new medical teams engaged in much eye-rolling over their previous care when they could obtain medical records-- about half never sent them despite multiple requests. 

Am I reading it correctly that you will be 90 minutes away from the nearest family in Citrus Springs? That may be impractical in terms of much hands-on help even if said daughter is not otherwise occupied with career and family and is willing to commit. A 3 hour round trip is a big ask. 

Is the secondary POA local to you in Florida or would you be asking this person to act on your behalf from across the country? IMO, the POA should ideally be someone who has boots on the ground and day-to-day familiarity with the current presentation of their LO's dementia. I've been secondary agent for 2 aunts simply because my mom's family doesn't have a wealth of options in my generation to look out for the one before. 

The other piece to this is that by living a distance from family your wellbeing is at risk. Not long before dad was finally diagnosed, my mom almost died on his watch. She developed an auto-immune hepatitis with extreme fatigue and confusion. I called my parents daily only to have dad tell me mom was at the pool, napping or being mean to him. Imagine my surprise when the local hospital called me as an emergency contact for my mom. I flew down the next day and when I arrived my mom was the color of a school bus. Dad had been too impaired to recognize she was in trouble or advocate for her with their medical B-team. Had a neighbor not stopped by and driven her to the ER she would have died. 

Another concern I would have that if your dear wife has already progressed to the mid-stages-- wanting to "go home" and trouble with larger gatherings-- are more of a mid-stage thing, she may struggle with socializing among women who have not had a cognitive shift. One of my aunts with dementia was placed in an AL after she was an appropriate candidate for that level of care; she was unable to keep up with the activities and conversation of the other ladies at the AL. Most of them shunned her, but there were a couple who I felt wandering into bullying behavior. It was all heartbreakingly "Middle school".

If your daughter could attend with her, that might be best. There may be day programs or even Memory Cafes for you to attend together as a social outlet.

I did notice that there was a bit more acceptance of PWD in my parents' Florida community in the early stages. This was particularly true for well-mannered men and those who were longtime members of whatever social group but over time dad became a pariah in his neighborhood. When I went down to sell their property, only one neighbor who dropped by (and there were at least a dozen who did) and only one asked after dad and he did so only to complain about him.

I hate to be such a downer and I do truly hope this is a good choice for you. I would just be ready to pivot if necessary.

HB

Iris L.

Ditto what HB said about the Red Hatters, she will not be able to keep up; she already cannot keep up with multiple family members.  The local Alzheimer's Association may offer a Memory Club for PWDs.  You can call now and ask about this.

Iris L.

Whyzit

We moved from Colorado to Connecticut to be near our son. Instead of driving, we sent our car by auto carrier. It cost us $1,000 and the door to door service took 6 days. DH and I flew and were there the same day. It worked out well for us and I didn’t have to deal with motels, rest stops, meals, safety on the road, etc. Just thought you may want to consider it as an option for you. Best wishes!

Rescue mom

I definitely agree what Harshed Buzz said. The OP seems to be going, regardless. But, just in case others may consider a move, (weather, relatively lower-cost housing) this  is a part of Florida that many people never see, and certainly not picture when they think “Florida.” 

They were about 10 years behind even getting cellphone service.. Real estate is less expensive there, the inland towns are small —which has pros and cons, as HB said—and the population, hence services,  is relatively low.  There’s not much for employment, (legal) so it could be really easy—or not—find caregiver help.  

Many, if not most, homeowners in that community are seasonal. I’d be concerned about medical care and socializing, as HB said.  When  everybody is a newcomer, that can make things easier. But cognitive issues or needing special care/help, is another side.

OTOH, for kayaking, scuba and cave diving, horses, flat hiking, and some basic-course golf, many people think it’s great. I loved it up there myself, when I was much younger  and had no kids in school nor health care issues to deal with. If you’re active, liked rural, and don’t need much health care, schools or a good job outside the home, it could be great.