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

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My Dad lives in SC. I live in OK. We talk two - three times a week. My brother lives near him and helps all the time. He is POA and Executor of all. This is his second caregiving stint as he took care of our uncle for seven years. Dad is 88 yo, still lives on his own, but has back and leg issues, anxiety since mom died 16 years ago, onset memory issues, still drives, but is forgetful and confused at times when I talk to him on the phone. He lives in an upstairs condo where he can hardly climb the stairs. He can afford home help but refuses, won't move to a garden apartment, and will cancel a Drs appointment rather than ask my sis-in-law or brother (who still works but both are willing to drive him anywhere) if it's outside of his driving "comfort zone." (Home to Chic-fil-A to my brother's house to home.) Ironically, I am a Caregiver Coordinator, yet, do not know what to do to help my brother. I can feel the strain in our relationship when I ask about Dad. I'm retiring early (15 months) so I can go spend time with Dad and give my bro & SIL long breaks, but it seems so far from now. I do go visit, but not for long periods of time. I've been reading Aging Care forums for a few years and appreciate the wonderful advice being offered here. Any and all thoughts and ideas are appreciated!

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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!
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Reply to Patts44ok
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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.
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Reply to 50sChild
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Pat, first thing to do is ask your brother. You might mention it in a phone call, but e-mailing him gives him a chance to think things over, especially since it might not be a good time for him to discuss what kind of help he can use.

Probably one of the most frustrating issues is that your father should be on a first floor level but refuses. This kind of situation can be hazardous, but also an intractable issue since the parent typically doesn't want to either admit the need for change or know how to accept it w/o sacrificing his perceived level of independence.

Ask your brother if he wants to share his plans for your father, and if that includes finding a more suitable place, if/when your father would agree. If so, that's research you can do from where you are.

That I think would be the key - what CAN you do from a distance? It couldn't be hands on at this point, but sometimes I found that the research needing to be done took time away from actual hands-on caregiving. I asked for help from a sibling but didn't get it, so had to rely on doing all the research myself. Having someone synopsize the issues in question for whatever I was searching for at the time would have been wonderful.

As a Caregiver Coordinator, conceptualize your father as a client. Itemize everything that you would recommend to a client's caregiver, than ask yourself what you can do for your own situation. Make you and your brother the clients and develop a plan, then e-mail it to your brother, for review at his leisure. Be aware that he might feel you're trying to tell him what to do, so couch your presentation in terms of trying to raise your level of commitment.

My research included private duty care as well. I researched companies, which wasn't always easy b/c their web sites indicate they're the best thing since sliced bread and electlricity. Getting behind those facades and marketing tactics wasn't easy. Speaking with representatives was better, especially since I realized early on that not everyone gives the same marketing spiel. When I caught inconsistences, that's when I reconsidered that company.

And sometimes just listening to someone vent is helpful. If you sense tension in calls, always ask your brother when you call if he feels up to talking, and if not, if there's anything you can do from a distance.

You didn't mention meals. Does your father get Meals on Wheels? If not, do you think you or your brother could get him to try it?

Respite care is another aspect. Contact the county or senior center in your father's area and find out what's available. If your father objects, your brother can tell him it's not for him - it's for your brother. Dad needs to know that your brother's stress is only going to increase, and he has to play a role in moderating that by being more flexible.
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"my sis-in-law shops and cooks for him"

But does she WANT to do this? And is he critical about her meals (you said he is critical towards people). What else does your SIL do for your father? Who cleans his place? 
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Reply to CTTN55
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CTTN55,
My bro hired a neighbor to clean his house once per week and she also checks on him by knocking on his door in the early evenings.
Sis-in-law told me she doesn't mind helping dad. She's a kind person. I have to go by what she and bro tell me ... and I trust them. It's not 24/7 care, yet. She takes him to dr appts and shopping (including a mattress and a new car for himself). My brother and sil do not take any money from dad.
Dad is critical of everything but passive/aggressive about it.
Dad to me during a visit: "Did you wash your hands before making me a sandwich?" (Of course I did, but was it necessary to ask? He's not a germ-a-phobe.)
Dad to sis-in-law on Thanksgiving: "Thanks for making dinner. Can you cook anything else besides turkey?"
Dad to waitress: The service was great. Do you always wear your skirts that short? (It really wasn't too short.)
Dad to gas station attendant: Consider getting a haircut.
Dad to Moose Lodge cook: Great lobster bisque. Have you been watering it down to go further?
Dad to my bro: You can take care of it.
And then when the chore is done: Why didn't you do it this way? (shows bro how to do it "right.")
One time when visiting, I found some fishing buddies for my dad, but they refused to take him out again because he wouldn't stop telling them how to hold their fishing rods. This isn't the dementia, because he's been like this for many, many years.

It sounds like I'm whining and ... okay, so I am whining, but it is frustrating trying to help him because anything that's done for him, is not done right.
Thank you for your help.
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Reply to Patts44ok
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Patts - it sounds like your dad doesn't want strangers to help him. And your brother is most likely stressed out/ burned out from caregiving.

The good thing is that your dad can afford home help to take over the tasks your brother is now doing for your dad. The best way for your dad to accept outside help is to for him to know and trust the person who will come to help.

I suggest finding a person you and your brother trust, bring that person by to meet your dad, first few times just to visit as a friend of yours or your brother, and later have that person take your dad out for a quick lunch or for some fun a few times, then spend some time with him at home to help a little around the condo. Gradually, that person can help more and more as your dad comes to know and trust him/her.

I had to find someone to take my mom out a few times a week because I didn't have time to take her out twice daily as she wanted. And I had to go through a similar process I described above in order for my mother to accept going out with that person.

When do you plan to visit your dad and give your brother a break? Perhaps, you can help him getting to know the home help person while you're there.
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Reply to polarbear
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Hi. I don't care give full time, but am the one on the spot, so end up sorting everything, paying bills, talking to agencies, taxiing , reassuring, reminding, over and over again. So much of what could be "my" time is taken with this.Over 14 hours this week and a half, not counting the three phone calls a day. Getting someone else to do the above is not an option and said parent won't accept let alone pay someone just for some company or taxiing for appointments, groceries etc. What I would love from my siblings is acknowledgement of how this impacts my life, some help with the financial costs of running around and some help in helping me catch up with all that doesn't get done on my home front. Don't know whether this helps, but thought I would offer it from a caregiver who is already feeling burnt out and yet not 24 hour caring. Great to read you are aware and wanting to do something about it. Great suggestions above. Good on you :)
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Reply to Mervyn
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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!
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Reply to Judysai422
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A lot of the resentments on the forum are about the main caregiver not receiving fair compensation for everything they are doing. Even when we give our time freely and insist we do it out of love it is hard to chase away that niggling little thought that when all is said and done those who haven't shared the burden equally will inherit an equal share - especially when caregiving stretches into years and decades. I'm a firm believer in paying for the "favours" received as they are given, at the very least your father should be paying gas money for all the driving.
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Reply to cwillie
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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.
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