Long Distance Care?

Judide65

Hi - My sister is in the process of EO diagnosis.  She lives in TX and I live in NC.  Is there anyone here who has experience with long distance care/support?  I am working with her children (they live near her) to navigate this disease/process.  

Just looking for someone to exchange ideas with.   

TIA. 

sandwichone123

Just remember that the best support for your sister is to support those caring for her. The book "The 36 hour day" has suggestions for distance support, too.

Jill N

Hi there,

I am not states away but I am a two-hour drive from my mom. My sister and I are her guardians.  My sister is a short flight away.  Mom is currently stage 5.  We have caregivers in her home part-time, cameras, and frequent check-ins. We are currently researching memory care facilities in the towns my sister and I live in.  Once she is no longer safe at home, she will move near one of us.  Im not sure how much of a resource I would be to you, but Im here!

tramey50

Hi, I live in Oregon and my Mother lives in Memory Care in Montana. I have helped long distance for about seven years. The best tip I have is to build a care team in your sisters area. This would include her children and Any relatives and friends willing to check in or assist. Some might have contacts in the area. 

Contact her local Area Agency on Aging. Not sure is your sister is a senior, but the agency should have referrals to help. We also talked with many in-home caregivers and had contracts in place for emergencies (this was very difficult during Covid as everyone was short staffed).

Was she a member in a church or similar groups? We have received some help with visits from the pastor and other church folks.

We also put a durable Power of Attorney and health proxy in place. Get that done as soon as you can. 

I was lucky as I could spend a week a month with my Mom. Good luck and let me know how it’s going. It is so hard.

Tracy

LevisHouse

I live in MN and I'm the conservator and have been the primary caregiver for my aunt who is in CA - and I'm working full time. I definitely don't have this figured out but happy to share.

LicketyGlitz

I have a friend in a very similar situation to yours except it's her mother with dementia, and her sister is boots on the ground care, while my long-distance caregiver friend manages all the healthcare aspects. She is the health proxy and can communicate with her mom's doctors. She does so through phone and email, keeps up on all her meds, sets up appointments, is sometimes zoomed into appointments, and has managed all the automated processes she can for her sister with prescriptions and such. They are a great team and she feels like she is contributing even though she's two states away.

Fairyland

I have been in the throes of this for nearly a year when I left my home and moved in with my mom. I live 4000 miles away across the Atlantic! I’ve recently decided enough is enough and she would be better off staying in the USA so I am going into full remote mode.

I am an only child and her relatives and friends have gradually lost touch, a process accelerated mightily by the pandemic, and those I could ask to do even a rare look-in on her, are even older or up to their eyes with their own issues. The tremendous onslaught of scammers has rendered independent use of the phone basically out for her.

So far, I have realised there are two aspects to it: setting it up, and maintaining it.

I don’t think I could have set it up without a good long spell IN her home, or failing that another person on the ground, which is not available to us, unless I could have found a geriatric care manager (a WHAT? What is that? We don’t have those round these parts! Is the response I would predict to that idea here in her midwest town).

Getting absolutely everything online and paperless has been one chore and some things just do not work, so I’m looking into an expat mail forwarding service to me now. Do NOT use USPS mail forwarding, in my experience, I’m still trying to untangle the mess that made.

Next is to tackle the idea of intrusive care and attention by someone who is not me, when there is “nothing wrong” with her. And of course, I don’t have anything else to do, right? Lol. I’m still tiptoeing around that one! Wish me luck.

I’m still hoping to get somewhere with technology so she can talk to us, and watch tv, without lots of assistance, but she is only MCI now so while promising, it probably won’t last even if it does start out well. iPhones and multi step tv services and normal remotes are no longer working.

Judide65

Thank you!  I am working with my sister's children.  We are actively putting plans in place while we are working on her diagnosis.  Our next goal is financial....

Judide65

Thank you for the suggestion of the book!  I have been pouring through it and it has been very beneficial.

jfkoc

You also want to get a DPOA in place and likely a Trust written.

Lindsay22

Hello. I was long distance caregiving for several years (we were in FL, mom in PA) until May when we moved back to PA (my hometown).  The first thing I would suggest is that you have open and honest conversation with your nieces and nephews about how much time they are able to give to caregiving and what their long-term goals are.  I have seen many times on this board where one sibling wants to "keep mom at home no matter what" but isn't the one who intends to live there and provide 24/7 care.  As others have said you should get the POA in order and decide who is the primary (you or one of her children).  Dementia changes so while you may feel on top of things now and like you have a workable plan you must remain flexible as her condition will require changes to her care as she progresses.  If your nieces and nephews have young children and/or highly demanding jobs they may not be able to provide the kind of day-to-day admin and care that is required.

MsNayMathews25

I am 5 hours away, am an only child of LO, within CA. My LO has been living alone and has yet to be formally diagnosed. I have been in contact through letters and calls to her PCP, the social worker and other medical providers. Within the last year she has fallen and broken her collarbone.  I found out a week later and got her to emergency however, she did not go for follow-up care.  We got an over the phone assessment for a dementia diagnosis, got scheduled for a full assessment and she avoided going in by canceling the appointment.

I do have family within the area who have recently joined in trying to support her. I travel often to check on her and have been unsuccessful in getting her to appointments as she will cancel them when called for a reminder. I have also been unsuccessful in visiting her, which tells me she is embarrassed about the state of her home. 

Her safety is of a major concern as she continues to drive and we may have to resort to disabling her car. Talking with her about her health and need for care is a challenge as she has lost words, and is increasingly confused about who she is speaking with. As her DD, she attempts to let me know that she is managing although I see that she is not.  I feel helpless, worried and scared. I have no clarity about what to do.  I am grateful for the many responses that I have read through and for the resources on this site, I did buy the book!  

mommyandme (m&m)

My brother and I did long distance care for a couple of years.  We had caregivers come in split shifts every day to start.  Then the 24/7 came which we did for over a year with hired help.  It was very difficult so we eventually moved her next to me.  

I would suggest cameras at the very least.  They were invaluable.  Still use them even though I’m with her all the time except for my respite breaks.  

Good luck! Sorry you’re in this club. 

Sarah1269

I'm also interested in people who do long distance care! I am 25 and a only child living in Texas my dad was in Massachusetts I noticed his decline and came back to check on him, I've been here for 3 weeks now. I'm going through my options. Very heartbreaking

Fairyland

If I could have a do-over and knowing what I know now,  AND I lived elsewhere in the USA, I would have moved my mom to live with me, using a fiblet that it was a vacation visit and only temporary.  

Then depending on how I and my DH felt, I probably would have selected and moved her into a suitable facility near my home, so I could keep an eye. I would tell her it was while we sorted out repairs in her own house, or the pandemic was over, or whatever it took. 

Me living abroad has made everything even more difficult, but I would question why he needs to stay so far away, and avoid long distance caregiving, it will always be suboptimal in my experience. I have already been through this with my father.