And they shouldn’t have access to other weapons either.
And they aren’t always considered competent to direct a 2 or 5 year plan.
A semester?? Seniors can linger for years, with declining capabilities, and it really is beyond the capability of one person to manage care. Before you agree to move him to your house you should either have POA so you can use his money to pay for extra caregivers, or make very sure that the brother that does have POA will agree to the payments.
Really, get the state involved if you have to. LF is right about getting an elder law attorney involved, and you need to do that and have things in place before he moves in with you. Otherwise, it sounds like once he moves in your siblings will push the work and expense onto you and your DH.
I understand infirmity, believe me, without going into detail why. And if I quit my job, my children can go to college locally for a lot less money; they will have to, or get a job and then go to college with tuition reimbursement. My point was that if he was ailing and then recovered to “linger” as one might say, I could get things in order for six months and then work only at night.
I agree that whoever’s house he moves into should have at least medical POA. (does anyone have experience with chair lifts in split level houses, like only six or seven stairs?)
On the bright side, we’ve started talking about some of these issues, and it turns out that he needs to get a copy of his will to my brother who will have POA (if nothing changes), and he needs to get a living will. So he will call his lawyer next week to get his living will done. He had no idea how detailed a living will is (if anyone here is not, they should look into it, for themselves and their parents; there are many detailed questions beyond “do all you can” and “DNR”).
I also am putting together a list of his doctors, and getting him check-ups. He needs to have doctors who are quite local; it is too taxing to drive him an hour away so I am getting his medical records forwarded to new doctors.
And the current house issue is that he has let some things like the basement and attic slip, so that’s on the agenda for next week, have my one brother review what he has and what needs to be disposed of. Of course that kind of stuff makes me believe that he can’t handle a house, no matter how much he wants to stay in it.
On the subject of doctors, have others found that almost all doctors’ offices will let you schedule an appointment for your parent, even without paperwork indicating such? Is that true in the hospital as well? Conversely, does that mean that every one of my siblings could do the same thing?
I thought because of HIPAA he has to write down my name to have permission to handle his medical information including appointment scheduling.
Thank you again for the advice, we have a lot to think about and this board has been very helpful.
I sent medical power of attorney forms to the hospital along with another paper I got my parent’s to sign. Once I got the papers to the right department (which is different from the department they tell me to send it to on the form), I now have a “mychart” tab for myself and both my parents. Through there, I can review lab results, message providers, and make appointments. I just made an opthamology appointment for my dad.
How do families handle this? I know, that if I quit my job to care for my parents, I would have talked to my brother about using money from the estate for my services. It doesn’t seem right for one child to quit a job, live without an income, while other siblings are allowed to work and get the same share of any inheritance. Even if there is no sibling, is there a way to pay for the services (from the estate) of the caregiver who is sacrificing income and time?
I’m up with my mom right n
Ugh…no editing allowed…I’m up with my mom right now. She told us last night she doesn’t want the valve replacement surgery. She doesn’t want to get the cathertization next week. She told me she had a long, happy life, she’s in a lot of pain, and she doesn’t want to go through another surgery and recovery. She also said she doesn’t want to die on the operating table. I told her I supported her decision, but I would like for there to be a discussion with the doctor so she, and we, understand having and not having the surgery. She is going to tell the other siblings so I’m keeping my mouth shut so she can tell them. I really hope we can all be on board with her decision.
We met with her sister and husband and my cousin this morning. She had to make the comment about how at least the sister still got to live in her home. Yes, my cousin is a saint. Her family moved in with her parents and she cares for them, her own young children, her disabled brother and husband and she works full time. My mom’s needs are so ongoing and tremendous but it sure does make me feel guilty and selfish. Mom never made a plan, never talked about what she wanted, etc. She’s really just too much for me.
Rhandco, sure, you can make an appointment. But just try asking a question.
Some people have no scruples. How are we related to such people? rhandco-
why are you giving your dad $? Is our brother in charge of managing his finances? If your dad has a cashflow problem he should be talking to your brother. Close your wallet and your ears, please.
"I told her I supported her decision, but I would like for there to be a discussion with the doctor so she, and we, understand having and not having the surgery. "
Sorry your mom and you are going through this tough time. Lots of pain is no fun, especially if you are not used to it. A frustrating thing for my mom was she could not talk at all in her last few months of life, so there was no way to ask her what she wanted, and my father was pretty much in mourning once it was clear there was no hope. Actually deciding on care was beyond him, and I was in my early 20s so I just didn’t have the bandwidth nor the gravitas to get my dad to make decisions. Only now am I pushing my dad to get a Living Will, which includes things such as surgery or not etc.
On quitting work and becoming a “full-time” caregiver: My friend’s wife quit her job and took care of her MIL for several years.
Of course, his brother was complaining about their mother’s will, so my friend talked to his lawyer, and at the very least, they calculated how much money his wife would get being a home health aide for 12 hours per day, 5 days per week and 6 hours per day on the weekends. In her case, she had to be at her MIL’s house all day, even with teenagers and her husband at home. She will get compensated from the estate. They kept careful records of how much time she spent early on, when it was clear the brother wanted financial control but wouldn’t lift finger one to help his mother.
It is one thing to “be a saint”, another thing to have others complain about what they get from the estate because after the loved one passes, suddenly it’s got to be 50-50 when during their life, it was clear who helped and who was too busy.
I’ve always been listed on my mother’s individual medical records (for each ongoing doctor) as next of kin and someone they could speak with. But in terms of more, have never been asked for proof of POA (eg, when she was in the hospital and different staff would speak with me. Same when my MIL was dying in ER.) Similarly, when DH was in ER and later ICU, major issue, lots of people updating me, no one asked me more than whether I was the wife. When my grandmother was in hospice in AZ, again, no one “verified” I was authorized. But you can’t count on that ease. I only mention this because it is unexpected. The old saying is, a chain is only as strong as it’s weakest link. It helps to plan for worst case.
It’s not just whether we know someone else who provided long term care or think we can manage the individual tasks. It’s the whole of it. You did mention changing colleges- that makes it good to consider the impact on all the family members. That’s not selfish. Someone mentioned getting assistance from home help agencies. Again, you need to get funds released for that. If the money co-mingled with your brother is locked in the business (or other stocks,) you need advice on alternative ways to access that. There was something similar on the radio this am, I only caught the end, but it’s not so easy to say, my kids will transfer colleges, I’ll pay, and later collect from the estate.
rhandco, I think you have rose-colored glasses on regarding how difficult this will all be. Even if you can individually address all the myriad problems and situations that will arise, first – nothing, and I do mean NOTHING, will go according to plan. And second, cumulatively it takes a big big HUGE toll, on your time, on your body, on your emotions, and on your relationships.
Your dad apparently has resources to pay for his own care. If they are tied up, your brother should be the one doing the work to liquidate them, and the work of finding and installing paid care. Or take on the burden of care himself. Or otherwise figure out how this is going to work. I don’t understand why you’re taking this on, especially knowing that you’ll probably never be fully compensated (unless you relish the idea of a drawn out court fight at some point).
Sibling situations are tricky, as many of the posters here can tell you, and I think it’s impossible to perfectly even out the burdens of caring for a parent. But at the very least, the one holding the purse strings shouldn’t be expecting the others to do all the work, just so that his inheritance is preserved.
@eyeamom. sorry for these tough times. I am supporting her decision not to have the surgery which I didn’t mention before because I don’t/didn’t want to be negative influence. However, my dad’s wife had the valve replacement surgery and physically it went pretty well, but she was in rehab a long time and it also seemed to knock her off her rocker. The Dr. said there was a thing actually called “broken heart symdrom” when, after heart surgery, the patient gets all sad and grieves and she basically never came out of that fog. She lived 2 more years, but mentally they were extremely difficult. Physically, she did lots better for the first while.
Facing the rehab and nursing home and other people bossing you around are issues that I do hope the Dr. can address; cause they are just as important as healing up stitches.
My mom moved in with Grandma when the live-in care giver situation just never worked. (as Grandma’s Alzheimers got worse). It was sort of a win for Mom as she and my dad were divorcing at the time. But Mom spent 10 years with Grandma being her caregiver and yep, siblings were mad that she “seemed” to get more than her share of the estate. Fortunately, one sibling (out of 5 living) supported Mom. She was the other one who even came to visit Grandma and take her to lunch on occasion. Otherwise the other ones said “It was too hard to see Mom like that.” Yeah, try living with it 24/7!
People are strange, even family. Well, YOUR families are strange, mine are just down right weird.
My dad had a very specific living will and although it was hard, hard, hard to follow his directives when the time came, I was very grateful that I knew exactly what he wanted. If anyone would like to see the text of my dad’s living will, pm me.
esobay, have you had any luck trying to get your mom’s pain dealt with? Her decision not to have the surgery seems sensible to me, but I’d think that she deserves to get adequate pain management so she doesn’t have to be in pain all the time.
eyemamom - I know this is a difficult time for you, your family, and your mom. Your mom is showing remarkable discernment. Most people just follow along with what the doctor says. I doubt the doctor will discuss the emotional toll of the surgery, but the point eso makes is good.
As to caregiving and estate issues - as my parent’s POA, I would set up a payment plan for caregivers, including family members, before anybody dies. Doesn’t this make more sense rather than waiting after the estate needs to be settled? Shouldn’t all this be decided beforehand?
rhandco - I wonder if there is a cultural expectation in your family that the daughter unconditionally cares for her parents while the son(s) manage the finances? I such a case, you will need an elder attorney to bring some authority to the issue. This should be done now, before you spend any more money on your dad who seems to have enough.
@eyemamon, this must be a tough road for you and your family, but I understand your mother’s reluctance to have the surgery. My mom had valve replacement surgery at 82. Before the valve problems she was otherwise healthy, active, independent, and cognitively strong with a positive life outlook. She had demonstrated 2 years earlier with knee replacement that she would and could be consistent and determined with rehab and physical therapy. In other words, a near perfect candidate. If she had known what she was in for she would never have done it. She’s fine now, but there were complications (reactions to some post op drugs) and setbacks and it was a much tougher road than she had expected. She became discouraged and regretted putting herself and her family through it, and it was about a year before she could look back and decide it was probably the right decision. If your mom is not now tough as nails and sharp and bright and determined, I worry about how she would recover from what is a major physical trauma.
Hi CF! Mom’s pain management is doing fine as far as I can tell. She still is escaping from the sling-upgraded-to-a complete-shoulder-immobilizer, so stopping healing of the break. But she doesn’t complain about pain .
The AL place finally put a bed alarm on her bed so that they know she is up in the night. They also reassessed her need for Level of care to 5 which is on top of daily hospice nurse visits, the private care givers coming 4 hr a day to get her dressed and to meals. Burn rate for care (not including rent, insurance and pharmacy) is over $4000 a month. Not sustainable for long, but I am hoping for a shorter life, but more comfortable. If it comes to it, we will sell the assets so that she will have good care.
MomofJandL … that is what I was trying to describe for eyeamom, but you did a better job.
I appreciate the insight. I completely agree with my mom about the trauma of surgery. I don’t know how everyone else will take it. What I’d like to know is the trajectory of either choice. She seems to believe she’ll just die in her sleep one night. While it could happen and if I could guarantee it I would, I don’t know if she could handle the reality. She’s so physically broken down. I don’t know how her body is still functioning. I was there for the weekend so my sister could be away worry free. With me she ate like a horse. I swear she goes on hunger strikes when she’s upset.
eyemamom, that’s the $64 gazillion dollar question. Unfortunately there’s no way to predict.
My late brother, who passed away in June and whose eldest daughter just got married yesterday and whose 60th birthday would have been later this week, always drilled his doctors about how much time he had left and what would it be like. Alas, they would never give him a satisfactory answer, because they didn’t know. The article below, which I sent him, was somewhat helpful but he never stopped wanting an answer and never got one, and pneumonia took him away.
I think that it’s possible that hospice organizations in her community may have resources that would be helpful for you, for her, and for your siblings. It’s a really tough situation. But I think it’s a breakthrough that your mother was brave enough to tell you what she wants. If it were me, I think I might want her to reaffirm this wish once more, to make sure it wasn’t just a passing thought.
Good luck with your siblings. This isn’t easy, ever.
DOCTOR AND PATIENT
Why Doctors Can’t Predict How Long a Patient Will Live
http://well.blogs.nytimes.com/2012/01/19/why-doctors-cant-predict-how-long-a-patient-will-live/