How do I help with dad's care when we live 1300 miles apart?
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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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.
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.
I talked to my brother and he brought me up to speed as to what's happening in all areas--health, finances, mental capacity, etc. I'm going there in September, but my bro said he'd call me if anything changes and I need to be there NOW.
The Senior Center is a great idea! Dad is still pretty social, but men his age tend to avoid dad because he likes telling people what they're doing wrong, from how to hold a fork to how to blow your nose. He's extremely critical, which is getting worse as he ages.
I think he's just lonely without mom. They loved each other so very much.
I'm so grateful my brother is there to help dad. He knows I am happy to do whatever I can from here. Thanks again GardenArtist and polarbear!
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?
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.
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.
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.
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!
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!
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.
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 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. =]
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?
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}}}
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}}}
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.