Is long distance caregiving really possible?

This is always a difficult question that many of us face when our loved ones live a great distance from us and they've reached the point where they need extra assistance. At the time, was no such thing as a "Private Patient Advocate" whom I could hire to assist my family with their medical caregiving needs. And frankly, I didn't trust anyone with my family's finances. In my own situation, my father was suddenly diagnosed with terminal lung cancer and had already begun aggressive radiation and chemo therapy. The problem was exacerbated by the fact that Dad had diabetes and early onset ALZ. He lived with Mom who is legally blind, and my only sibling who is mentally disabled. And all three lived out of state. Because there were no other relatives, they were totally dependent upon neighbors to transport them to the hospital for Dad's radiation and chemo treatments, trips to the pharmacy and grocery shopping, etc.

This had been my fear all throughout adulthood. My husband and I immediately took time off work; obtaining a Family Medical Leave of Absence (FMLA), traveled to their home, started packing, secured a real estate agent and miraculously sold their home within 3 days for a huge sum! We then moved them to our city to live in a condo within 6 blocks of us. I retained the services of an Accountant and an amazing Elder Law Attorney who advised us all on my becoming Legal Caregiver of all 3 of my family members (Power of Attorney: Healthcare and Fiduciary), set up a Special Needs Trust with my mother as "for the Benefit of", and all 3 of my loved ones signed DNRs, Living Wills, and Advance Directives for Healthcare (ADHCs). I set up appointments for all three with the best physicians in the specialties that met their medical needs and had their former physicians mail (or fax) their full medical histories to their new MDs. By the time my father tragically passed away from Lung Cancer, he was comforted knowing "his girls" were under the loving care of me (and my sweet husband).

If this scenario is something that you don't think is do-able in your situation, then I highly recommend that you investigate Private Patient Advocates in the area where your mother lives. I empathize with your situation (3 times over!) and wish you the best in making a decision that put your mother's bio/psycho/social needs at the forefront of your decision-making. I hope you realize that, sadly, her condition is not likely to improve, as it's part of the natural aging process that our parents will need more and more assistance. Do you really want a stranger handling your mother's healthcare and fiduciary needs? It's a tough decision and I wish you the best.

It would be extremely difficult especially with the memory gaps. You really have no idea what she is forgetting to tell you, bills she is forgetting to pay, etc. I would suggest calling the local agency on aging where she lives for suggestions and a visit to you mom. In Colorado these sorts of services are provided through local or regional councils of governments.

I think it is possible when there are adequate finances. Everything can be hired out, realistically it does take quite a bit of money. The other option is assisted living. This forum is a great resource - good luck to you.

uberhaupt nicht (umlaut over the first u)

Not at all! :-) Wayne

Yes you can do it, but you need to go visit for a few days to set up some things. 1st get yourself a Geriatric Care Manager(hr'ly $$ Vary-ours is $90 hr), that is usually a RN specelizing in eldercare. They will be able to help you find the different types of care your Mom needs from transport to inhome visit's. I do My Dad's finances via internet banking. He has a POA+Medical Directive set up and I am signer on his bill pay accounts. I do go down every 5-6 weeks to take care of odd's and ends and My brother (who lives closer) stops in to check on him at other times. We have a live-in private duty caregiver and that is $42,000 a yr, assisted living depending on area may be cheaper-Dad's pension and SS would cover it but he has the finaces so far to stay home a little longer.Good Luck, it can be done but you need to go visit to set up finances,and so on.

As others have pointed out, if you can afford one, Geriatric Care Managers can be a great solution. There are people who provide a less expensive alternative to GCMs. I have a friend who started a service where she essentially takes the role of her clients' 'daughter'; accompanying them to doctors' appointments, doing their shopping, coordinating their home repairs and home care, sorting their mail, paying their bills, etc. She charges about $25 /hour. To find someone like that, I'd imagine you'd need to call on some connections in your parent's town.
As a side note, at the AL and IL community I'm associated with, I see people whose kids have tried to manage a long-distance arrangement. I see them after they've moved their parent closer to them and into a supported living situation. They are some of our happiest customers. It's a tough road you're travelling. If you can find the right person near your mom, and you have the resources to pay for it, it can be manageable. If not, don't wait until everything falls apart to make the decision to move mom nearer to you.

I think it will be difficult to maintain a long distance caregiving absent family members or long time friends who are trustworthy and willing to make themselves available for your mother. For now if you can come up with a plan to make sure she has good eating habits (perhaps meals on wheels) and a paid friend to accompany her shopping and to/from medical appts. If you can switch to a doctor who makes house calls that would eliminate many problems scheduling appts and getting transportation for her. If memory is beginning to be an issue, things like driving and using the stove could be problematic.
Living far away you may need to see if she can safely use the shower, perhaps a transfer bench and a new hand held shower head is needed with protective
bars in the tub area so she doesn't fall. Does she have a high toliet or need a bedside commode at the bed or over a traditional toliet to give her handles to help her rise from the toliet. I think with a POA and health directive, you can handle the bill paying online or just have them mailed to your address. It is the safety issues which are very important to reduce injury due to memory lose or loss of mobility.

However, uprooting an elder has its drawbacks too. Now they have a loss of memory and they are in unfamilar surrounds. Not a good combination.

I think long distance caregiving is possible but like all caregiving it will not be a walk in the park but may be a walk that you must take to help her.

Good luck
Elizabeth

I am a caregiver and have had cases where family is out of state it can be done just need to make sure the caregiver has all the required documents and excellent references if you want your loved one to stay at home example- home care private 1,000 per week 24 hour care-- agency 1,500-2,200 per week and adl home up to 8,000 per month depends on income and if the person has long term health insur would help . also caregivers will travel to a case out of state with family paying expences hiope alll work out

One other item- as long as the elder can still make their own decisions(the dr determines that) they have the right to do what they want. My Dad is very good and careful around the people that might make that type of determination-(hence the 2 yr battle to stop driving) that is also why he does not live closer to me -HE says he wants to stay in home.
TammyAnn is right on when it comes to cost- we pay our caregiver$42K a yr and she gets room,board,use of car- pretty much anything extra she needs. Dad refuses to give her a raise(she's been there 4.5 yrs so i usually pad a little extra somewhere to compensate since i pay the bills. When she is off the agency gets $25 hr or $210 per weekend day. He's used his LT Ins up and is working on a reverse MTG- he's 93.
The reason I used a GCM was because i hadn't lived in the area in 40+ yrs and really didn't know anyone anymore.
The 1st 2 yrs I commuted every 10 days back+forth for 4-5 days , I had a very understanding employer- It finally took a toll on my health and pocket so i had to stop. tried living with him but it didn't work so I do Long distance-

It is possible. My mother will be 101 in a couple of days and is in assisted living. In her mid 90s she began to need more care. She is basically healthy though has Borderline Personality Disorder and narcissism which makes keeping help and dealing with her difficult. For years she had a cleaning lady who did extra stuff for her - laundry etc. but in time she alienated her, Mother went through a few people for grocery shopping each of whom worked for a while. Finally my daughter arranged for a live in senior nanny from the same agency from whom my daughter got a live in nanny for her kids (from the Philippines). Had mother been able to get along with her I think she could have stayed in her apartment. The cost of the apartment and the nanny was probably a bit less than her costs in the ALF. However she alienated the nanny, who quit after 9 months, and also a number of people in her apartment building, so, at her request, I moved her to an ALF. She lasted 6 months in that ALF, had an upset with staff - it was a mess - and I moved her to a second ALF and told her if she could not manage there, I would not move her to another ALF, but to nursing home which she dreads. There have been many problems, but in fact she is well cared for, though she cannot/will not eat in the dining room, so she pays someone to shop for her. She has home care 4 x a day ordered for life by her doctor - aides who come for about 15-20 mins. at a time to help her bathe and dress and who make her meals and clean up. Mother still keeps her apartment in order, The ALF does the cleaning and laundry. She manages her finances and calls on her financial advisor for help if there is something she doesn't understand. He is a Godsend and works in the same area she lives so visits her once in a while and does her taxes. I will be added to her accounts when I next go down to keep an eye on them as she is a bit paranoid and thinks people are overcharging her sometimes, and at her age it is wise. Most of her bills come out of her account, and I will try to set it up that they all do. I was more involved at one point but the stress of the narcissism and BPD affected my health and at 75 I have my own health issues. For a while she had a nurse, who runs a seniors help agency, do things for her, who I thought was very good, but mother stopped having her as she said she was to expensive. She takes cabs to her doctor's office. If she doesn't feel well the ambulance takes her to an ER and the ALF calls me. The ER has yet to find anything much wrong with her. She still makes these decisions herself as she is competent and wants/needs to be in control. She has a scooter and goes out quite a bit - to church and shopping. We are fortunate that she is so healthy and still mentally competent, though her personality is h*ll on wheels. A local cousin used to visit with and help her, but he has dropped out after receiving some of her criticism, and I do not blame him. My sister lives overseas and used to visit for free holidays, and do nothing to help, but does not visit since mother went into the ALF, as she would have to pay for a room. What sis wants is the inheritance when mother dies - all of it - her half and mine. Whatever! We see this time and again here,
I have digressed a bit but you can see that it is possible to care-give at a distance. by making use of suitable facilities, hired help and help available through the system. We are in Canada so it works a bit differently, but the basics are similar.
Find out what agencies etc. are in her area so you can find out what resources are available. If your mum has enough income she will have to pay for some help. If her income/assets are low enough you can apply for medicaid for her. You might want to contact the local Social Services as well as the Agency on Aging to discuss options.
Good luck and let us know how you manage. Having my mother close to me is out of the question as her mental illness is too destructive and, in any case, she wants to stay where she is. (((((((((Hugs)))))))) Joan

Long distance caregiving gives you just that: long distance contact. If you want others who are paid to care for your parents, then you can expect mostly disappointments because others do not love and know your parents like you do. Buyer beware. Lots of people out there to take advantage of others.

emjo -- your Mom sounds like my 97 year old neighbor -- is there something about narcissistic personality disorders that lets people live to 100???? Alienating family, controlling w/tantrums, etc. She IS nice to people if they could easily leave. I'm just a neighbor so I'm a golden-haired child. She has a long-suffering night caregiver whom she feels free to abuse verbally & emotionally since she figures she can't leave. Her long-suffering son has learned to cope by setting boundries. She is allowed to call him daily at 9:00am, not one minute sooner, and he will call her at 6pm exactly. If he were ever late (he never is) she may not call him until 6:15pm. Sounds draconian but before that she would call 7-8 times a day, dialing 17 times in a row if he or the kids didn't answer (not ABOUT anything, just calling), so the kids had quit answering her calls at all. This is a compromise they worked out that keeps everyone sane.

Don't get me wrong --- I really enjoy my neighbor, join her at Denny's for breakfast every chance I get, but it's definately been a real learning experience to be around her for 12 years. (BTW, she does NOT have dementia -- a lifetime of personality disorders, but not dementia, ).

ferris -you are right that some people want ti take advantage, however, mother has good people and it as happy as she can be in her situation, If something does not work out, you look for someone else. Mother delights in being miserable and finding fault so she will never be very happy no matter what
horserider -ah - the golden child. I am and always have been the scapegoat/servant. I actually think there is some literature about those who "let it all out" and are miserable living longer than "nice" people. It may account for some of the stats about caregivers dying before those they care for. Mother is nice to people if it benefits her, and if they are not much in her life. She cannot keep it up. She can be absolutely charming, funny, interesting company and is very intelligent, but eventually she gets nasty. It took years before my cousin got it. You absolutely have to set boundaries. I have had over 20 emails a day and she got mad if I didn't answer each one. I had to set boundaries on that, and also on the verbal/emotional abuse. She asks for help, gives me partial information, gets mad and abusive when I don't do something instantly, but, when I do do what she asks me to do, she accuses me of interfering and going behind her back - something I have never done, and gets abusive again. Last time she did that I cut her off for several months. The ALF calls me if she is not well so I am still in the loop. I can take the repetitiveness, and paranoia etc, but will not tolerate the abuse. In her case, too, there is no dementia - just as you say - a lifetime of personality disorder and narcissism. It has always been this way. I have some PTSD from childhood and later experiences -I could write a book about verbal and emotional abuse from her and my sis who IMO and that of a psychiatrist who saw all of us, is worse than my mother. Unfortunately my daughter seems to have inherited it too. I am surrounded! There are several of mother's cousins with the same problems and all the other cousins, aunts and uncles are the nicest people you could meet. Keeping your sanity has to be a primary goal.

I don't expect to have to do long distance care, but all these answers are so helpful and full of information about resources. Thank you all!

Thank you everyone! I am very exhausted and depressed tonight, but it helped so much to read your responses with so many ideas and support. I wish I had the brain cells working to write individual replies, but please know I read and value each and every one. I'm not sure what the future will bring with my mother so much is up in the air. She has many issues similar to emjo's (much sympathy to you btw) so it's um, tricky.

One of the many plus's of a GCM is also dealing with the medicare and other legalities of Eldercare- Ours was a nice bridge between the dr after hospital stays and other health issue's. She mediated the struggle of me understanding Dad's new found "loss of independance" and My struggle with him on "Dad , I am an adult now not the teenager who just left the house." He had a Hard time with that.
We have an Ageing Resource Center up here that has to do with Dartmouth(college+hospital) they have a wealth of info on the "two way street", offer classes for caregivers and even have social times that give the caregivers a bit of time to unwind while the one they are caring for is being entertained and socializing with their own equals.
The GCM has something similar down In NJ where my dad is. So look around there is help and resources out there.
There are some online courses you can also take, i did while i was still driving a truck cross country before Dad started his down hill slide, hoping I'd be ready to help when needed. Check the community colleges for that.

((((((whirlpool))))) first, always first, look after you - especially if you are caregiving a narcissist. If your mum does not have the finances for an ALF, start looking into Medicaid. Distance is best with these kind of people and it is doable.

Of course you can take care of all the financial care-giving from a distance, but the day-to-day care is a different story. Unless you are willing to pay an all out salary for a live-in caregiver (s), I see no way that long-distance caregiving is a possibility.

I tried it last year with my folks. They had home health in 3 times a week and their church members would come and take them to Dr. Appointments. Mom started to go down hill and the HH nurse called me and we got her admitted to the hospital. She never did recover. I brought Dad back home with me and it was nice to have him with me. I wished they would have made the move a few years ago so I could have helped them, but they were stubborn and would not come. Dad was sad and lonely after mom passed and his health had gone down hill with trying to care for mom. Lost Dad in January. I relied on the HH agencies, social workers and the church but really would not recommend it.

copper - So sorry for your loses.

I disagree with ferris,sorry i am a caregiver i had a couple i took care of 1 yr both passed away i lived with them 3 days a week all holidays when noone else would do it.. u see i had deep affection for the two of them . they taught me what love is and was and such devotion. i am an inspirational writer too. and i got to speak at the memorial for both u can get good help and loving caregivers not all are bad. long distant caregiving can be done right certifications and background check and references and prayer..

I was a long distance caregiver for a few years, and spent at least $16,000 on travel, bills, maintenance of Mom's house she never went back to, partial payment for her assisted living, etc. etc. etc.....if you have a chance to either move or get them moved to your neck of the woods it can be a lot better, but sometimes you can do a lot by phone, neighbor, internet, etc. in between visits. Prepare to spend all your vacations on caregiving and visiting, and try to reduce work commitments if you can. My dad would have consented to move and I was starting to explore the options just before he passed on; Mom I eventually did sell her home and bring her here into a rehab program that would accept her. It did not go all that well, but at least she got to see her favorite grandchild a lot more and she did not have to be alone when she passed on, and that very well could have happened if we had not moved her, as it did with my dad. It is a hard decision to be faced with, and I have watched people make either choice and either have no regrets or tons of them. Sometimes I wanted to say that "long-distance caregiver" is just a euphemism for "not being there..." but then I go back and remember what we actually did and realize it might not have been all wrong either...big sigh, because there is no knowing what would have gone well or gone badly had I decided otherwise!

I think it comes down to how receptive the person needing care is to the idea of having people help her. My mom wasn't. Flat out, she wasn't. And I knew she WOULD accept me in her home to cook for her and so forth.

Also, she would drive despite having had her license revoked - the neighbors would call to tell me they saw her down at Kmart or wherever. Nearly every night, as I got off work, I'd have messages from the neighbors, a doctor's office (blowing off an appointment), the senior transport system in town (refusing to go with the driver), Home Health (refusing entry), Adult Protective Services (YIKES!), the people I'd hired to go in and help with errands a couple times a week (being literally thrown out the door - for 91 and only 95 pounds, my mom is surprisingly strong and nasty when she wants).

So I just couldn't do it anymore and moved out here 11 months ago. Honestly, if I hadn't, she'd be dead by now.

But if she'd been receptive to having people come in to help her, I wouldn't have had to move in with her - she wasn't and still isn't. If I hadn't been able to make the life-altering choice of moving in with her, I don't know what I would have done...

oreosmeow- I have had the same issue with my mother. Caregiving is not for the faint of heart and you definitely need alligator skin. I have been caring for my mom for nearly two years now. We have had a couple of other caregivers on four different occasions. Each one my mother asked to leave because of her paranoia about strangers and stealing from her. The most extreme case she actually attempted to throw one out of the house, with the phone in one hand ready to call 911. This was when I realized that I needed to notify the police of my mother's Alzheimer's. When this occurs the only possible caregivers, if parents want to remain in their homes, is a family member. It is much less stressful on the parents, as well, family have the same memories and are able to comfort and provide reassurance as no one else can.

TammyAnn- three days per week does not a week make. What happened the other four days? Having someone with dementia takes 24/7 care because each person has unique symptoms. I agree there are good substitute caregivers (paid) and then there are not. Unless one has cameras throughout a house, you never know what really goes on. Spending those last years or months with a parent will allow you to say good-bye. And no, caregiving is not for everyone and each has to make that decision what to do for themselves.