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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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.
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!!!
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.
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.
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.
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}}}
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}}}
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 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. =]
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!
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.
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!
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!
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.
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.