Anyone move to the middle of nowhere with the LO - How's it going now

elhijo

Hello ALZ Connected,

Blessing to all. Thanks for reading my post.

Due to high cost of living and poor healthcare options where I live, etc., I'm thinking about relocating with my loved one of state, to Nowhere-ville, USA. I have some places in mind but I've often though about what it would be like to live in the middle of nowhere, a small town, with a hospital nearby but out in the middle of nowhere. It doesn't make much sense to keep paying for the cost of a big city if the big city where we live doesn't offer much in the terms of quality of life for us.

So I'm thinking about just packing up and moving. My mom doesn't suffer from any maladies outside of ALZ thank God. So it's not like we would need to be in/out hospital frequently or need to go to the doctor frequently. Working remotely is an option for me, to an extent. So I'm mulling my options.

Anyone who has successfully, or unsuccessfully done this, please let me know. I'd really like to hear your thoughts.

Thanks,

elhijo

star26

My Dad was already living in the middle of nowhere and I joined him so that he could stay in his home. If you are complaining about poor healthcare options now, wait until you're in a small town. Options for quality home caregivers, adult daycare, geriatric psychiatrists, MC & AL, respite facilities, attorneys, etc will ALL be limited. Even the hospital may have a shortage of doctors like ours does. There are plenty of US cities with a relatively low cost of living that offer plenty of resources for elderly people. The South comes to mind. I would recommend considering that instead. And if you'd be isolating yourself away from family and friends, I probably would not consider it at all just for cost of living purposes. Small towns in the middle of nowhere are cheap for a reason.

Quilting brings calm

Define big city, small town, high cost of living 

If you live in a huge city of several hundred thousand or more, then maybe move to a city of 100-200 thousand. There you can find decent hospitals, specialists, and care options  for a lower price than say  Chicago. 

Think about external factors  such as weather, airports,  lack of a support system( friends and family).  You aren’t going to know anyone to come shovel your drive, charge your car battery, go to the grocery store.  You will need a car because busses (if any) will probably only run Monday/Friday 7-6pm.  Uber may not exist and taxis will be few. There won’t be a metra train.

There may be more delivery options but not near as much as a big city.  

Stuck in the middle

I agree that you shouldn't be thinking of a small town of 10,000.  My job took me to places like that, where you are a stranger if your grandfather wasn't born there, and I don't recommend it to anyone.  Mid-sized towns like Des Moines and Topeka are nice.

Stuck in the middle

If a small town has a hospital now, don't count on it being there next week.  Small town hospitals are closing right and left, and there are entire counties in Texas, Kansas, et. al. that have no hospital and no ambulance.  One candidate for Governor of Missouri last year ran on a platform of assuring that each county had at least a clinic.  She lost.

elhijo

Thank you so much for this reply. I had no idea small town hospitals were in that type of crisis. I would imagine if anything more would be needed because of Covid. I guess insurance is making them go broke? 

Thanks for everyone else who responded. Your advice was most helpful.

Stuck in the middle

Covid made them go broke, by stopping the elective procedures like knee replacements that are their main source of income.  They were in trouble anyway.  It has been well reported on the news out here in the "flyover" States, where it is happening.

Stuck in the middle

You are correct that more was needed during Covid.  It's not about what people need, it's about what people want and can pay for.  That is why hospitals were laying nurses off during a pandemic.  And closing.

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Ginsamae

Please reconsider this!  We already lived in the middle of nowhere when MIL moved in with us. It has been very difficult to get her in to appointments with the only neurologist within a 50 mile radius and don't even consider looking for a geri-psych or other mental health professional within a 100 mile radius that can see her within the next 6 months. Our local hospital (itself 25 miles away) doesn't have a lot going for it and the next closest one (30 miles away) is much more expensive. We also have very limited options for in-home assistance or adult day care.

harshedbuzz

elhijo-

There are many reasons I would not chose to do this.

1. You would be losing whatever network and safety net you have. Who would be there to make sure you're ok and advocate for you if needed? 

My parents lived in central FL in the winter and while they knew their neighbors and had made friends, when my mom went into liver failure because of some autoimmune issue, dad couldn't recognize that she was ill- spoiler alert- she was the color of a school bus. She nearly died on his watch.

2. Healthcare can be an issue. And again, this isn't about your mom, she is terminally ill. But you need good care available to keep you in the best health possible to be there for her and for after. Not just hospitals that no longer exist or are in danger of closing (mostly in places that did not expand Medicaid-Why Rural Hospitals are Closing (healthline.com). It's also an issue with access to specialty care and continuity. My parents spent half the year in a east coast resort area. They had trouble attracting talent. Their PCPs tended to leave in 2-3 years for a more desirable setting. There was a 2 hour drive to see a some specialists and  the local hospital was notoriously mediocre. 

My mom brought dad to their ER in a psychotic episode. They did a CT scan but no bloodwork and turfed him to the "local" neurologist who could see him in 6 months. A week later I had him in the ER at a major university teaching hospital near me- the resident took a thorough history, did the tests required and started treatment for one of those conditions that mimic dementia before he was even admitted. In the end, dad was diagnosed with very early Alzheimer's and Wernicke-Korsakoff"s. I often wonder if dad would have had a longer period of a decent quality of life before the Alzheimer's progressed further if he'd gone to the second hospital first.

3. Getting help can be harder. Even little things that make life easier- a tow from AAA, groceries or a pizza delivered take longer or aren't available. A few people who live very rural report having trouble getting HHAs and even hospice services set up. 

4. You risk becoming really isolated.

5. While certain expenses can be dramatically lower in rural or small towns, others are actually a bit higher. My MIL lived in a small town in the midwest where she taught 4th grade to 3 generations. She was a pretty revered member of the community. Certain things were a wash- her utilities and groceries were about the same as ours, but she paid more for things like cars, appliances, ad home decor cost more because there was little competition. 

6. And then there's the after. Sadly, one day your job as caregiver will be done. Do you want to rebuild your life in the middle of nowhere? One thing to consider, if you are currently a homeowner, is that even if the replacement home you buy appreciates at same rate as the one you have now, with a cost differential you might not be able to move back into the same level of housing. 

It's a lot to consider. Wishing you the best as you decide.

HB

Whyzit

I lived the dream of living in the Colorado mountains eleven miles out of a town that had no stop lights, a small clinic and was 55 miles to the nearest hospital. It was great until it wasn’t. We were no longer able to manage cutting firewood, monthly shopping in the city, etc. Hated to move, loved it there, loved the people and our church.

We moved to that small city 55 miles away. Used the nearby hospital and doctors but still had to go to the big city for specialists. Bought a nice ranch style house that would work for most but DH wanted to climb ladders to clean gutters and use his chain saws to cut the trees down. We walked with canes dragging garden hoses to water the lawn. DH hated the cars driving on our street. I hired a good handy man but it was a daily battle with DH who wanted to do things he shouldn’t. We lasted there three years.

We now live in a modest independent living condo we bought in Connecticut that is 20 minutes away from our son. We order groceries on line and when delivered, the staff brings them to our kitchen counter. All of Our medical needs are being handled at the geriatric unit of the local medical university hospital. We have Dial-a-ride that costs $35 a year and will take us anywhere in our town as well as to the medical center. We have a great senior center that today is reopening from COVID. DH is on a waiting list for day care which hopefully opens soon. I’m investigating memory care options for DH so I will be ready when it is needed.

Our condo fee includes weekly light housekeeping and many activities. If something needs repair or tending to a call to the office takes care of it. We have virtually no responsibilities. It is nice to have people around to talk with.

I encourage you to live your dream to live in the middle of nowhere but do it when you don’t have the responsibility of someone who has dementia that is only going to become worse. Your dream will turn into a nightmare. I will be interested in seeing what you decide. Best wishes.

MN Chickadee

I would never in a million years choose to move to a place with my PWD with fewer services, supports, people, help. Your mother WILL decline. This is a terminal illness. Alz will eventually cause her body to forget how to walk, swallow, remain continent, get up out of a chair. Caring for them becomes a full time job and then some. Her personality may change and become ornery or even combative making for a constant unpleasant job for you. Very, very few people do this all alone - eventually you will need help, and usually have to hire it if they don't have family members to pitch in. And it's pretty hard to bring help to the home when you live in the middle of nowhere. Once she isn't sleeping at night and is up finding trouble at all hours of the day, how long do you think you can go on your own? Seriously, how many nights can you go with broken or no sleep? Respite is usually the biggest factor that makes in home care possible. You will need a break. You will need time to work for your income. You will need to sleep. What is your plan to make that happen as her disease progresses? Agencies probably aren't sending home health aides to where you have in mind. There likely is not an adult daycare. Or volunteers or groups with programs for PWD to socialize, or literally ANYTHING. Or specialists she may need in the future. She may not need the hospital much now, but take my word for it. Eventually she will. My mother was the most fit person in the world, but Alz has caught up with her body and she is in the ER frequently. I would seriously consider how this decision will impact the quality of life for both of you long term. And I would research Medicaid laws in whatever states you are considering. If you get to a point where you can't care for her anymore and need to move her to a memory care facility, hopefully you land in a place that has a reasonable situation to pay for it. Just my two cents. I would look at this description of the stages of the disease and average lengths of each stage. At what point would the living arrangement become impossible, and is it worth relocating and investing in a house for this amount of time? Assume stage 5 and after means you are spending a majority of your day caring for her, supervising, entertaining etc. 

https://www.alzinfo.org/pym/feature/clinical-stages-alzheimers-disease/

elhijo

Thank you to Everyone who replied. 

I actually came on the site today to help out someone who was helping take care of his dad, was going to offer some words of encouragement if possible. In doing this I went through my old posts and saw more replies.

Whyzit - you wanted to know what I ended up doing and we ended up staying right where we were. 

Basically, I get so fed up with the whole home health aide service sometimes that it makes me want to get up and move as I don't have much in the way of family for direct help. Family comes over yes but they aren't willing to give me respite so it's just me and the home health aide (she's very good but can only do a couple of days a week). I have tried other aides/ agencies with 'ok' to downright terrible results.

Nonetheless you all made some very salient points. I appreciate your collective honesty and willingness to share. I guess sometimes I get caught up in the romanticism of moving my mom somewhere with cows and chickens and me cutting wood and making her happy, as she had that type of existence growing up. She is after all almost 90 and I want to see as happy as possible.

But you all raised a very valid point about the progression of this illness. I gotta say though, I didn't listen to anyone (after doctors, nurses, pills, repeated angry bouts, etc., failed us), and took my mom off all meds (under a new doc's care). My mom after this has actually gotten better. She still has memory problems but her gait is much, much better. She smiles and is happy and her cognitive abilities have gone up. There are days or even weeks when I think she doesn't have ALZ anymore but then something changes (a relative comes over and then leaves or I move a piece of furniture or even acidic foods) and then it's the sundowning again/ endless pacing and endless going to the bathroom all night. By the Almighty those behaviors have come down - a lot. But they do still happen enough that they count as still happening. 

So you all gave me some really good perspective. This disease sucks. Sucks isn't even the right word for it but it's the most I can manage tonight. 

Thanks harshedbuzz, Whyzit, and MN Chickadee. Yours were the responses I didn't see originally and I am so glad I saw tonight. The responses really resonated with me.

Best of luck to you all and have a happy and safe Thanksgiving Holiday.

elhijo

Iris L.

elhijo wrote:

  There are days or even weeks when I think she doesn't have ALZ anymore but then something changes (a relative comes over and then leaves or I move a piece of furniture or even acidic foods) and then it's the sundowning again/ endless pacing and endless going to the bathroom all night. By the Almighty those behaviors have come down - a lot. 

I'm so glad your mom is responding positively to your good and wholesome care.  This is something promoted by our member, Alz+.  I believe PWDs need to live in a nurturing bubble.  PWDs cannot tolerate change too much.  Best wishes for the future.

Iris