How do I help with dad's care when we live 1300 miles apart?

I'm sorry for your loss Patts, it sounds as though your father was basically doing OK until he suddenly... wasn't. I'm glad you were able to spend time with him these last few weeks.

The final report and thoughts. Dad took a terrible fall the week before I flew out to visit. I got on a plane as soon as possible. Dad spent six days in Neuro ICU, eventually pulling out all means of life support on his own. The doctor called it a "life altering trauma." My brother and I knew what he was telling us. Dad's last eight hours on earth was spent in a lovely hospice facility.
What I learned from this experience:
There is no one answer to care giving issues because each and every person and situation are different.
No one is ever fully prepared for the death of a loved one, even with an elder parent.
Having your end-of-life decisions in writing is important, but it is still difficult to deal with the aftermath of a death.
And finally, very strange people come out of the woodwork at funerals.

Sorry to read the news about your dad Patts44ok. For those like him that refuse to allow someone to help, this is likely what will happen. Our mother was also "independent", maintaining that mantra along with being able to cook, clean and care for herself. The driving argument was always "I don't go far." We had hired aides to come in for an hour (minimum) a day to check on her and ensure her meds were taken (set up a locked pill dispenser.) That lasted a few months and then she refused to let them in. We had already taken the car away (oh that was fun!) Her refusal to move in with one of my brothers or AL was met with the same mantra along with pauuugh, I would not live in one of those places! We made plans to move her anyway and had to come up with some way to get her to move (this is what brought me here - attorney says we cannot drag her out of the house, MC/AL says they don't do 'committals', aka guardianship - rock-ME-hardplace!) Just before the move (planned for Tuesday, just after New Years), her neighbor reported that she bruised her leg (a Thursday, snowing, no way for me to get there.) Non-local brother was arriving Friday night and his first task was to send a picture to me. It was what I suspected - cellulitis! So, if this move had not been planned, she would have gone several more days untreated and it could have ended badly!  (forgot to add - that independent, cook, clean, take care of self?  Nope.  She had to rely on us to drive her at that point, often tried to cancel appointments or would forget to schedule them, balked at going to several (does that even now!), food in fridge dried up and/or moldy, food in freezer old and/or freezer burned, cleaning not the greatest, evident now that we're finishing up prepping condo for sale (UGH!), and clearly could not care for herself if she never reported the injury to one of us or sought treatment for it!  Cleaning was very minimal, and she was eating frozen dinners and prepacked "stuff".  Even with pill dispenser she would miss some days!  :-/)

You reported some improvement 2 days ago - how is he doing now? Tell him he has a horde of well-wishers cheering him on to get up and going asap!!!

Well, that's a BIG improvement and BIG step forward. Congratulations to your father!

I sit here with dad in ICU (and my computer) sending thanks to you all. He's doing a tiny bit better and resting as comfortably as he can since they took him off the ventilator. Thank God!

Patts, I'm so sorry to learn about this sad development. Don't give up hope though; my father went through something similar 15 years before he died. He was a fighter, and we both learned a lot about long term hospital care. And if I remember correctly, your father is a strong and determined man.

If anyone raises that issue, i.e., of long term care in a hospital rather than rehab setting, be aware that there are hospitals which specifically focus on this. We were guided to Select Specialty Hospital, which at the time rented floor space in St. Joseph Mercy Hospitals in our area.

If you get to this point and want more info, PM me. I had Dad in 2 different ones. If the patient decompensates and needs to return to a "regular hospital", Medicare requires that any return to a long term care hospital can NOT be from the one he/she was previously in. Weird.

I assume that your father is not able to communicate at this time. The ICU nurses said it wasn't really known how much someone could hear or relate to others during this period. So I tried anyway; sang his favorite hymns, played CDs of his favorite music, all the while watching the brain monitor (I can't remember what the specific name of the device is - BMI???.

I noticed that his brain activity increased during these musical sessions!

I'm "sending" healing thoughts for you and all your family. Be sure that each of you takes time out for respite; ICU vigil is emotionally draining.

Patts, I just now read this thread. I’m so sorry to hear about your dad.

I did solo, long distance caregiving for my  parents. Mom died in April and Dad is in memory care now.

Sadly, your dads plight is common with elders. No one wants things to change or admit they can’t handle things any longer. It’s usually a crisis that forces change.

My folks were hanging by a thread for years in their home. The refused any in home help. Not even meals on wheels. Drove me bat s crazy.....

Mom started to have falls, dad had moderate dementia. After a bad fall I moved mom directly from the hospital to assisted living.
Then moved Dad in with her a few days later. It was pure screaming hell but I did it.

This stuff is no one’s fault. We do the best we can. We do as much as elders will allow. I live 600 miles from my folks. The situation would have been the same if I lived next door.

Good luck to you, your dad and your family.

7/9/2018 UPDATE:
Well, Dad took a bad fall before I could get out there on my already booked flight. I got on an immediate flight and am now sitting in Neuro ICU with him. He broke his femur (surgery to repair) and wrist, gashed his head and arm and lay on his condo floor for 12 hours overnight before my brother found him. (not blaming anyone for this.) Dad was extremely dehydrated because he had turned up the heat to 92 degrees F.
He's on a ventilator, and there are tubes coming from every orifice in his body. So, now the decision in the matter of Dad's future care is moot. He will need 24/7 care. He cannot live in a second floor condo anymore, much less on his own. He will not be able to drive. He's going to need weeks/months (?) of rehab, and probably a nursing home after that. We haven't even begun to consider that part.

All the signs were there, but my Dad is fiercely independent, as are so many elderly. He refused help. He wouldn't or couldn't follow simple verbal requests. He over medicated himself with some meds at the same time as under medicating with others.
Please pray for my dad.

UPDATE: For those of you who offered so much wisdom, here is an update to my dad question a couple of weeks ago.
My caregiver brother and sister-in-law took a well-deserved weekend break for their anniversary. Our dad continuously called my brother for help with minor things (tv remote, computer, door key doesn't work, etc). At bro's request I began calling dad every few hours to check on him. It made me more aware how bad dad's dementia has become.
I've booked a flight to South Carolina in less than two weeks. I've done my research about in-home senior services (trying to avoid a long-term-care facility at this point). While I'm there, my brother and I will set up contracts to hire a part-time homemaker service to help with cleaning, food prep, medication management, laundry, etc. (A person to visit Monday through Friday.) My sister-in-law will still provide assistance for dr apptmts and shopping. I will set up online bill pay through his bank. I'm told he's hoarding pretty good now so I'm mentally prepared to do some heavy cleaning.
Most importantly, I get to see my dad again and talk to him about his own wants and needs as he becomes more frail, which is never an easy "talk."
As for becoming a full time caregiver for dad, I've lived away from my parents for more than 30 years. My life, family, job and obligations are here in OK now. This is where I'm staying.
Thank you all for your input and help. {{{HUGZZZ}}}

Okay, something's wrong here. I've posted 2 previous quick requests for an update and each has disappeared. This is the third try.

Patts, I'm bringing this thread forward so you can share your updated plans.

Patts44ok, I'm relatively new to caregiving, but one thing I have found so far, is that if my long distance sibling is responsible for something (research, or arranging something which can be done from afar), then I really don't need to know the details....I just want it to be done. I don't want to be asked to read and comment, I only want to know details if there is something to be done on my end.

disgustedtoo, what a great idea!!!!

If he can still make lures and talk fishing, perhaps the senior center would be interested in holding a training class of sorts - get people to sign up and dad can teach them? This would allow him to be, in a small way, the big fish in the small pond again?

GardenArtist,
I will certainly try those suggestions about fishing. At this time I am ghost writing (I am a writer also) for dad when he sends me old articles he wants re-written. I do it, send them back to him and he can submit those articles under his own name. There is no doubt he's in mental and physical decline, but I go along to keep his spirits up. Unfortunately, not only has he lost the ability to cohesively put all that information in his head onto paper, but his computer skills have massively declined. i.e. deletes things at random, cannot turn on computer at times, cannot email or send a document when he did so a few days previous. The TV remote is a puzzle. Direct questions are a foreign language to him.
Perhaps I will contact some of his old fishing cronies from up north and ask them to drop dad a line, a walk down memory lane, as you will.
I've decided to jump on a plane and head to SC soon just to spend a week with him this summer, and then head back for a couple of weeks in September/October. Whatever I have to do to help, I will do. Thank you. {{{Hugzzzz}}}

Pat, thanks for that update and background information on your father's fishing expertise. There is a way that he could create some semblance of what he did before - online fishing forums. This is something you could help him with, even if it is difficult for him to remember or articulate answers to questions.

And you can do it by long distance.

Another option is to see if you can find a forum of fishing enthusiasts for retirees, or even a local group of similar former fishermen. One of the restaurants we used to go to had a special section reserved for Veterans, who met there weekly for meals.

Maybe you could even start a local retired fishermen's club, just for retirees, and just to get together to talk.

I think his negative attitude is part of the loss of self, prestige, goals and other helpful factors after retiring. It can be a difficult challenge to keep that self esteem, especially if it was supported by praise and a certain amount of public acknowledgement and support.

Do you think that just taking him for a few fishing trips to a local lake might help spark those good memories?

You are all so, so helpful. I appreciate every thought and idea offered. At this point I think my brother, sister-in-law and I have it covered. I do understand dad's passive-aggressive attitude, though. He was a big fish in a small pond until retirement and the move south. Everyone wanted his advice on fishing up north. He field tested fishing equipment for companies and made his own rods, lures, and wrote for some of the big sporting magazines. When he moved south with mom, he became the small fish in the big ocean. No one knew him. No one wanted his advice. He became obsolete in his field. It hurts him still even after 30 years away from his northern home.
I spoke with him last night and he sounded so frail, almost defeated. I think after the last time we spoke (I explained how important it is for my brother to know what's going on with dad's health) he finally realized that he cannot go to dr appointments alone. Not because he'll get lost, but due to his inability to tell us what the doctors said. He confuses the doctors' advice and it's confusing my brother and me. He's also been taking over the counter meds that may be wrongly interacting with his prescription meds. Another little piece of independence has been chipped away and I know this frustrates our elders. I see it all the time.
I thank you all for letting me vent, and helping so many caregivers with your advice and wisdom. That's why I try to read the forums here. Good advice and a warm hug is always good for the soul. =]

Terri4077...Do it! It,can't hurt. Ask in a loving way...hey guys, I could really use some help with Mom''s care. Could any of you help with......?

With regard to parents being negative, sometimes I sat to my dad in a teasing tone, Hey dad, you sound like a grumpy old man! " or when he gets short with me, I day, "maybe I should come back when you are in a better mood." Honestly, after a while, he actually started saying thank you and telling me I am doing a good job. Try it!

I so appreciate the advice and (generally) kindness on this site. :) Much good feedback has been given. As the person who lives far away and struggles to be there for Mom, this perspective is helpful for me. But I'm the one who does everything, and can't get help from my local siblings. What would your advice be about an email to my sibs asking what they WOULD be willing to do? thanks for any feedback that comes to mind.

"Anything that's done for him, is not done right". That sounds like my mother. She's passive-aggressive and loves to criticize. It sounds to me like, if the cooking, cleaning is taken care of sufficiently for now, without complaints from brother or sis-in-law, then leave it be. I've been seriously thinking about prepared meals for my parents, but sometimes getting away to the kitchen is a vital break for me.

Heres a way to help your brother. Pay for some respite care for him so he can get a break once or twice a week. insist. Come up with a plan by figuring how to get your dad to let someone come. Even if you tell your dad its covered by insurance, that or when you go to visit, you and your brother find a place for dad together. Ask him how you can help. Keep the line of communication open. Its easy to get very resentful once you are swamped and over your head in the caregiving world.

Pat, your post about the kinds of remarks your father makes sheds a lot of insight, and perhaps what is a major factor to any burn-out your brother may be suffering. The strain you sense when speaking with him may actually be a factor of his frustration with your father.

Sharing examples of his critical nature reveals a lot about how challenging it must be to care for him. Someone that critical can not only challenge or undercut a caregiver's confidence in himself or herself, but can also make caregiving more of a challenge, more of a job, and definitely more difficult.

Your brother may be burning out from this factor more than caregiving itself. Rudeness to a waitress and other employees is embarrassing. Has your father always been this critical? If so, he's probably not going to change, but you or your brother can stand up to him, although it won't be easy.

You and your brother do have the right not to be embarrassed when you take him out in public. And you and your brother do have the right to refuse to do so if he won't alter his behavior.

For whatever reason, he wants to, or has a need to, cut people down and insult them. That probably arises from some psychological issue which I won't try to analyze as I'm not medically qualified to do so.

There are some very good medical pros here who might be able to lend insight into why he behaves like this, and what compensating mechanisms might be. Or, if you have that kind of access, ask a psychologist or psychiatrist why people want to belittle others. If you get answers, that might help your brother.

And as you help your brother more, this may become a problem that will need to be addressed for both of you.

Ask your brother if he has made most of Dads or talked to Dad about making most of his bills autopay ..Its such a relief. Maybe you can research grocery delivery and you or your brother or dad cna just order. He wont have to do steps then and your brother has one less time consuming task to do . I use Meijers and i think whole foods and a couple other companies do it. Maybe you can make some meals and bring them or ship them . The kind that you store in the freezer and just nuke . If hes not eating all that well. My Mom likes her independence and i always keep cold cuts and salads for her in fridge so she can make sandwiches etc. It really is time to get some in house help ..esp if he can afford it . See if you can find someone he likes . Let him have a say in the choice . That helps alot .

ClaudiaG--you are way off base. Sounds like you need a caregiver support group to help with your frustrations. If you'd like I can search for one in your area.

50sChild & MelissaPA2AZ, thank you for your kind words. I moved away from home (NY) more than 30 years ago and have raised my own family. I work and will NOT quit my job. I am not being selfish. I have obligations to family here in OK just as much as I have with my dad. When mom was ill, I lived with dad to help care for her for 6 months. After she passed, dad insisted on moving to OK with me. He and my husband did not get along. Dad created chaos due to his anxiety. Now he lives close to my brother. Dad doesn't need monetary help. In fact, his retirement income is more than my brother's income or mine. I also don't want to be an "interfering relative" when it comes to dad's care. I'm not there, so I accept their decisions and choices.

I've talked to my brother and he has assigned me the research for assisted living facilities in the area for future references. I can do that! I'm finding other resources that may be in their area. I can do that too!
You all have helped so much! Thank you!

I am in the same position as your brother, however, I am lucky because I am retired, now. Mervyn''s response made me think that maybe you can help your brother by doing something nice for him and his wife. Give them a weekend at a nice hotel, a gift of a cleaning service, massages, a food delivery for them, etc.
Also, I agree that there are things you can do from a distance. For example, do ordering of paper goods and non perishables from a warehouse store so your brother does not have to lug them there...your dad can pay - you just need the cc number. Running to the store for my parents is a time buster, especially since the request is usually right after I did the shopping!
Also, when you do visit, be productive. The thing that frustrates me the most is when my brother won't accomplish tasks my dad has saved for him, like going thru paperwork or shredding or taking things to good will or servicing his car. Those are short term projects that would help me a lot. And I won't have to listen to my dad complain that it did not get done. Think of it as a working visit, not a social one. As your brother in advance what would be the most helpful while you are there.
It seems that lots of us get more critcal as we age, so your dad should be able to find like minded friends to gripe with. Perhaps he needs a purpose to give him a more positive perspective. He might find someone at the Senior Center or church who could use his help or support.
It is nice of you to retire early to help more, but don't put financial future in jeopardy by doing so. You can't help if you need it.
Good luck, and I wish you were my sibling!

Hi. It is so wonderful that you love and want to help you brother and father. Since you do get to talk with your father several times a week, maybe try to avoid asking your brother how dad is doing. Perhaps ask you brother how he is doing, coping with everything. I live in AZ, folks are in PA. Like you, I am on the phone with them as often as possible. Like your dad, my folks are stubborn. This may not work for you, but I contribute financially to their care (they finally agreed to move from Independent
Living to Assisted Care in their progressive care home). Like you, I visit when and for as long as I can. Beyond that the best I can offer is a listening ear which, as previously mentioned in one post, can be more valuable than it may feel. Regarding the stubbornness, I always told my parents the choice in all things was, of course, theirs, unless they were putting themselves or someone else at risk. As they continue to decline I am beginning to evaluate the “putting themselves at risk” piece through the lense of quality of life over quantity or length of life. A life they can’t enjoy feels to me like I am being selfish. Finally, while I am doing long distance caregiving I try to remember and honor the fact that they are the parents and I am the daughter. If I slip and think of myself as the parent I risk losing respect for their choices, and they can sense that and resent it. It is such a challenging balancing act especially when there is distance involved. And it is not surprising you have trouble “performing” in your professional role with someone you love. There is a reason surgeons are discouraged from operating on family members. You have a good heart. Love your brother, express the appreciation you feel for what he is doing, and be kind to yourself. Wishing you peace and wisdom during this journey.

Claudia G, you’ve engaged me and I am in a very RAW distance caregiving frame of mind.

I’ve been a distance caregiver for over 15 years. People’s reasons for distance caregiving are as varied as people’s god-given individuality and their own life forces and trajectories. I devoted a huge part of my life to figuring out how to care for my parents long-distance. Early on, I opted for cross-country commuting, thinking it was an irrefutable devotion, as ClaudiaG suggests it is. I kept up the ClaudiaG perspective for years, missing holidays, vacations, personal savings, sanity and physical health to meet the inner morality I thought I was serving.

When my folks began needing much more, I retired early and moved with my husband 1500 miles to be nearer my parents, sacrificing my own retirement and husband’s family homestead. For more than a decade, I put my parents first, over my husband, though he supported me as he was trying to be a loving person. Where I am now is that my father is on Hospice and I am burnt out. Yes, I still manage absolutely everything for my father, except I get nauseous and ill, cry at the drop of a hat, am bitter and can’t bring myself to visit him (he is unable to be understood any more and I am not cut out to handle the smells). I can’t help that. I do it occasionally anyway.

I’m sick of having to enact the “proofs” of my love. I don’t want anyone telling me I didn’t really love my parents.

ClaudiaG noted to Patts44ok: “You are coordinating care giving for other people, you should know this.” So, you are shaming a person who is reaching out for solutions? Beyond managing caregivers as a vocation -- anyone who works in any job is somehow contributing to the care giving of other people. Caregiving is not simply a black or white series of fixed actions. Caregiving and jobs involve deep experience, which Patts44ok deserves from us. Not shame.

Don't let others make you feel guilty for not up-ending your life to be there. I am an only child and my parents declined rapidly in their 70s, living four doors down the street from me. It has been a nightmare that has affected my life so negatively for the past 8 years. I think I've got many, many years to continue to go through this slog. Much of their situation was self-inflicted due to poor lifestyle choices. If I could go back in time, I would have moved several states away and let this mess unravel without a front row seat. Nobody says you HAVE to be there. Don't sell or give your life away to deal with this elder-care garbage. I'm watching a lot of my dreams and goals fade away.

Sorry but OK is not on the other side of the planet, you could have been going there all along. Don't wait for your brother to ask for help, he won't. Those of us doing all the heavy lifting don't need phone calls, we need your time. You can go 'make dinners' for your dad to freeze, don't leave that to your SIL too. You go visit for short trips, have you taken a longer vacation to elsewhere? You are coordinating care giving for other people, you should know this. Sorry, but I'm the caregiver for my dad (94) and I've heard all this bs before. It's not that hard to help, but it is easy to say you want to. Don't make people ask. it just builds resentment (if you can't tell).

Dear Pats44ok sounds as if everything is in place: The most important thing is that you, your brother and your sil are all on good terms. If your brother can email you a list of what he needs to keep his sanity and maintain your father's health, you will be able to sort through what you can do long distance. In order to get an outsider into the house, use your brother's list and determine monthly light house cleaning tasks and contact a reputable agency that can provide versatile home health aids. Aim to get your father's trust then over the next 15 months expand, adjust and update the task list with suggestions from your brother and sil.