Caretaker for parents?

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thefoggycity
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Caretaker for parents?

Post by thefoggycity »

Dear Bogleheads:

Have any of you modified your work to care for another family member? Has anyone done it long term?

I am considering helping my parents as my dad's Alzheimers progresses and my mom needs more and more help. They've made it clear that they don't even want to find help through their long term disability insurance and wish for "family" to be the ones to help. I am open to doing this and want to help take care of them. They said they would be willing to compensate me somehow either personally or through their long-term disability insurance. I am not sure about those details yet, but would love to hear from folks who have done similar things and if looking back, what are the pros and cons of that decision to either press pause on your career or work part-time.

Thank you!
dbr
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Re: Caretaker for parents?

Post by dbr »

I have experienced three instances of this sort of care. In each case it was not long before the care needs progressed to at least full time (7x24) attention. In one case it was possible to maintain a family member at their home pretty much until final days. These situations involved Alzheimers, senile dementia, mental illness, and drug addiction. Along the path needs arose that a person can't meet while trying to also hold down a job or even support their own family. In-home care with hired health care workers can work but that ultimately was insufficient in two of the cases and worked in the third. There are some pretty hairy stories that can be told. It can be very challenging to maintain a safe environment, especially if physical disability starts to combine with mental issues.
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LilyFleur
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Re: Caretaker for parents?

Post by LilyFleur »

I've told my kids I want to remain in my home as long as possible but I've asked them to install cameras when it gets to that point so they can keep an eye on the caretakers. One (the one who is bad with money) said they will move in with me if I need that. As I wrote that sentence, I am wondering how that would work. Perhaps I will give financial power of attorney to the other kid, with the caveat that they would transfer a limited amount of money to my checking account as needed so the kid living with me could purchase what we needed.

If the person being cared for has a very low income, I think the government will pay a family caretaker, but it's a low hourly rate.
chw
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Re: Caretaker for parents?

Post by chw »

You mention long term disability insurance- do you mean long term care insurance? If your parents have the means with/without the insurance to afford assisted living, I would explore options with them in their area. I went thru this with my parents earlier this year after Mom required unexpected surgery. I live 1500 miles away, and both parents had declined to a point they were codependent on each other for some daily needs, and if one of them became ill, the other would suffer in some way. I would say even if I lived nearby them, it would have been a huge task to manage their day to day living needs, with many of them beyond the scope of my skills.

You might find supplementing your “help” with private duty care in the home could work for you, but IMO, if you’re able to find a quality AL facility, your parents quality of life could be greatly improved- especially if they qualify for the long term care insurance to pay out. My parents love their new apartment and the activities and dining on site. Some of the nagging ailments my Mom suffered from for years have been diminished with the day to day nursing care she receives.

I’ve been able to better coordinate their day to day living needs, and consult with them daily on other issues as they arise (and they do!) with them living in AL. My parents also feel a huge weight off their shoulders with their home sold, and no longer having to manage their day to day living, or their financial affairs.
TN_Boy
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Re: Caretaker for parents?

Post by TN_Boy »

thefoggycity wrote: Mon Sep 14, 2020 3:20 pm Dear Bogleheads:

Have any of you modified your work to care for another family member? Has anyone done it long term?

I am considering helping my parents as my dad's Alzheimers progresses and my mom needs more and more help. They've made it clear that they don't even want to find help through their long term disability insurance and wish for "family" to be the ones to help. I am open to doing this and want to help take care of them. They said they would be willing to compensate me somehow either personally or through their long-term disability insurance. I am not sure about those details yet, but would love to hear from folks who have done similar things and if looking back, what are the pros and cons of that decision to either press pause on your career or work part-time.

Thank you!
Do you fully understand what a burden caring for someone with Alzheimers can be? As in 24x7? Constant monitoring, helping with toileting, eating, etc. If they get agitated, learning how to calm them down (sometimes, medical intervention/drugs are required). As the dementia progresses, this could become exhausting for just two people.

Different families have different needs and relationships. The help they are requesting is a very big ask. I would not ask a child of mine to do that. Why are they asking you to put your life on hold when they have some resources to bring in outside help?

If your career would be negatively impacted by this help, well, you should really think hard about this. You won't get that time back.
delamer
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Re: Caretaker for parents?

Post by delamer »

dbr wrote: Mon Sep 14, 2020 3:56 pm I have experienced three instances of this sort of care. In each case it was not long before the care needs progressed to at least full time (7x24) attention. In one case it was possible to maintain a family member at their home pretty much until final days. These situations involved Alzheimers, senile dementia, mental illness, and drug addiction. Along the path needs arose that a person can't meet while trying to also hold down a job or even support their own family. In-home care with hired health care workers can work but that ultimately was insufficient in two of the cases and worked in the third. There are some pretty hairy stories that can be told. It can be very challenging to maintain a safe environment, especially if physical disability starts to combine with mental issues.
In the long run, one caretaker isn’t going to be able to care for two elderly people with serious medical issues without ruining the caretaker’s own physical and mental health. In addition to dealing with their physical needs, there’s maintaining the house, cooking, doing laundry, etc.

Rather than long-term disability insurance, do you really mean long-term CARE insurance? Because there is a big difference.
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thefoggycity
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Re: Caretaker for parents?

Post by thefoggycity »

Thanks for the responses, everyone. Long term care, yes. My mistake. I am guessing I would only be able to help out until it wasn't feasible. At that point, they would need professional help. They're not buying that now (no pun intended) but they'll have to at some point.
jpohio
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Re: Caretaker for parents?

Post by jpohio »

I suggest you thoroughly research what is really involved in taking care of people with memory issues. It can get all-consuming, exhausting, and frankly family members usually cannot provide the same scope of care as can be found in Memory Care units within Assisted Living facilities. My two brothers and I are taking care of our mother, who is in reasonably good physical health, but has dementia. We shut off her gas stove because she left the burners on multiple times, hired a company to come in 5 days/week 3 hours per day, and we still need to go there almost every day.

All three of us, and her doctor, agree that she would probably be better off in AL facility, but COVID has complicated that decision.

Alzheimers is a whole different level of care. Before you start down this path, I would gather as much information as possible about alternatives.
InMyDreams
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Re: Caretaker for parents?

Post by InMyDreams »

thefoggycity wrote: Mon Sep 14, 2020 3:20 pm...They've made it clear that they don't even want to find help through their long term disability insurance and wish for "family" to be the ones to help.
Yeah, what is it about that. I'm running into it with my father, and I've seen it in others, dementia or not. It always makes me think of the TV family on The Waltons. Multi-generational family, living under one roof. As the eldest generation aged, they were still making contributions (shelling peas, rocking the baby, whatever) and there was family in and out to keep an eye on grandpa & grandma.

I think we crave the familiar as we age, but most of us don't have a Waltons lifestyle.

Very difficult situation, but keep in mind that the decisions you make now will set you on a trajectory. Even if you are significantly involved, I doubt that you will be able to do it all. Introducing help now, even if it's just a couple of times a week for a few hours, may make adding more later more acceptable.

Good luck.

Discussion about looking for the familiar as we age. This article is just a portion of a much larger podcast.
https://www.npr.org/sections/health-sho ... aths-chill
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galving
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Re: Caretaker for parents?

Post by galving »

LilyFleur wrote: Mon Sep 14, 2020 4:10 pm I've told my kids I want to remain in my home as long as possible but I've asked them to install cameras when it gets to that point so they can keep an eye on the caretakers. One (the one who is bad with money) said they will move in with me if I need that. As I wrote that sentence, I am wondering how that would work. Perhaps I will give financial power of attorney to the other kid, with the caveat that they would transfer a limited amount of money to my checking account as needed so the kid living with me could purchase what we needed.

If the person being cared for has a very low income, I think the government will pay a family caretaker, but it's a low hourly rate.
Very similar situation with my family. They want to remain in the house as long as possible.
Given that the laundry is in the basement, its an obstacle course to get to the bathrooms and there are multiple stairs just to get in the house its probably not a long term solution.

We put Nest cameras in to keep track of everyone. Though we stopped short of having an in-home caregiver for now.
I think that's likely a matter of time, and would love to hear recommendations from folks who've already experienced this.
Broken Man 1999
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Re: Caretaker for parents?

Post by Broken Man 1999 »

DW took care of her mother for the last few years of mother's life.

Understand, caring for a loved one is draining. DW's mother had no cognitive issues, but her needs slowly sucked up DW's hours.

With all due respect, I don't think you know what you are signing up to do. You cannot do this alone.

Perhaps before signing up for this, seek out some folks who are caring for Alzheimer patients.

Go into this with the knowledge of what you will be facing.

Best of luck to you!

Broken Man 1999
“If I cannot drink Bourbon and smoke cigars in Heaven then I shall not go. " -Mark Twain
clip651
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Re: Caretaker for parents?

Post by clip651 »

If you take on caregiving as a family member, prepare for it to take over your whole life for an unpredictable time period (months to years). By taking over your whole life that can mean - no time for work, little time for your own family or friends or activities, hard to fit in all the errands and chores and caregiving, hard to find time to sleep or shower yourself, for example.

It can be very rewarding in certain ways, as you get time with your loved ones, and can take care of them the way you think is best. It can also be exhausting, draining, and at times, just impossible to keep up with the needs of the person/people you're caring for, particularly when there are two of them.

And the above is coming from experience with caregiving for family members with mild dementia and various physical needs, not for Alzheimers. Have seen friends and extended family deal with Alzheimers, which can be even more demanding. Do some reading on the disease, and/or talk to others with experience to see what you may be in for. I'm very sorry for your father's diagnosis.

Consider pitching in a bit to help as needed in the beginning to get a feel for what the situation is, what is needed now, and what may be needed later. Then consider hiring some help to supplement whatever you feel you are able to contribute to the situation. You will likely need to coordinate any hired help at a minimum, once they are at the point where they need more help than you can provide. You can also look into placement in an appropriate facility. Covid complicates all of this for high risk elderly, of course.

If you have multiple siblings and/or other reliable and available family members to share the load, it can work better in some circumstances. It's a lot to take on for just one person. You won't get any vacation days, ever, unless you have hired help (in home, facility, or respite care), or someone else in the family to give you a break.

I'm not in any way trying to discourage you from helping your parents. Just trying to help you and them walk in with open eyes and see what choices you are all making, particularly if you decide to avoid hiring any sort of help, since that's what you asked.

best wishes, there are no easy answers,
cj
k b
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Re: Caretaker for parents?

Post by k b »

I think this would work only if you are willing to take a lot of external help for as many chores as possible. Would be difficult to handle both the physical and mental/ emotional responsibilities.
rich126
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Re: Caretaker for parents?

Post by rich126 »

thefoggycity wrote: Mon Sep 14, 2020 3:20 pm Dear Bogleheads:

Have any of you modified your work to care for another family member? Has anyone done it long term?

I am considering helping my parents as my dad's Alzheimers progresses and my mom needs more and more help. They've made it clear that they don't even want to find help through their long term disability insurance and wish for "family" to be the ones to help. I am open to doing this and want to help take care of them. They said they would be willing to compensate me somehow either personally or through their long-term disability insurance. I am not sure about those details yet, but would love to hear from folks who have done similar things and if looking back, what are the pros and cons of that decision to either press pause on your career or work part-time.

Thank you!
My GF and her 2 brothers helped to take care of her mother. They had a caretaker during the work day (the state may have paid for some/all of that) and then each one of them would take a week. They would help her out in the evenings and weekends and with doctor appointments. In that case the mother was just getting older and had issues getting around along with being diabetic and some other medical issues. Memory wasn't a big thing.

In her case, while a lot of work, there weren't any other options and I think they were grateful to do that. With her father, I think a lot of the work rested on her and the brothers were not involved as equitably as they should have.

Unfortunately her mother passed a few months ago.
dbr
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Re: Caretaker for parents?

Post by dbr »

I would also add that even if care comes through a care facility you or someone needs full legal authority to deal with a person's affairs. This means a durable power of attorney actually exercised at banks etc., a health care power of attorney and so on. In one of the three cases I was involved in another family member had to get appointed custodian by court order as the person refused to grant power of attorney. Functioning as a legal custodian is an onerous responsibility to be avoided if possible. I was also a designated representative for Social Security, which is not granted just by having a POA. Designated rep also brings legal responsibilities and reports.
Point
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Re: Caretaker for parents?

Post by Point »

We provided care for a parent for 6 months of active Alzheimers. It turned into quite a nightmare. Her desire to "elope" was huge and we struggled to prevent it. 7x24x2x2 - that's all day, all night, two couples rotating care and coverage. We could not keep it up and ended up having her live in a very good assisted living for dementia care home. Without that we would have burnt out. The benefit of assisted living is they provide a schedule, repetition, and there are similarly situated folks who your parent can "draft" during the day - share routines, sit next to each other, talk to while they are still able, eat with, etc. A good care facility is an outstanding way to go. We would bring our whole family to special occasions there for meals too.
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WoodSpinner
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Re: Caretaker for parents?

Post by WoodSpinner »

OP,

A couple of suggestions....

1. Read the 36 Hour Day?, it is a good read for someone stepping up to help care for an Alzheimer’s patient.

2. Try and find an Alzheimer’s support group near by. It really helps to talk, share, and compare notes.

3. Expect personalities, food preferences and habits to change—be supportive when you can, it’s a new adventure.

Best of luck

WoodSpinner
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Re: Caretaker for parents?

Post by Fallible »

thefoggycity wrote: Mon Sep 14, 2020 4:43 pm Thanks for the responses, everyone. Long term care, yes. My mistake. I am guessing I would only be able to help out until it wasn't feasible. At that point, they would need professional help. They're not buying that now (no pun intended) but they'll have to at some point.
Then you do realize that your helping out can only be temporary until professional help is needed. Now, as noted by others here, you would want to prepare for that future legally and medically with their physician.

As for the impact on your job, I think you can determine that when you know better what caregiving duties will be necessary (and they can change often, even suddenly, as the illness progresses) and how your parents might compensate you financially if that's what is agreed to.

One other thing, which I base on my own experiences caregiving for a parent with Alzheimer's: I don't know if your mother's problem also involves dementia or just caring for your father, but when they tell you they don't want professional help, you'll want to remember that their judgment is compromised by illness. No matter how much you want to agree with them and do as they wish, you'll have to go against those wishes at some point and that is terribly hard to do. I came to rely heavily on my parent's physician as I felt he understood not only the illness but also the stress it placed on the caregiver. He felt that helping the caregiver was an important way to help the patient.
"Yes, investing is simple. But it is not easy, for it requires discipline, patience, steadfastness, and that most uncommon of all gifts, common sense." ~Jack Bogle
rjbraun
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Re: Caretaker for parents?

Post by rjbraun »

WoodSpinner wrote: Mon Sep 14, 2020 8:28 pm OP,

A couple of suggestions....

1. Read the 36 Hour Day?, it is a good read for someone stepping up to help care for an Alzheimer’s patient.

2. Try and find an Alzheimer’s support group near by. It really helps to talk, share, and compare notes.

3. Expect personalities, food preferences and habits to change—be supportive when you can, it’s a new adventure.

Best of luck

WoodSpinner
+1 for OP to tap the resources offered by the Alzheimer's Association. The association offers a 24/7 hotline and support groups. There's a support group geared to adult children caregivers which would seem a good fit for OP's situation. Not sure if the support groups are offered nationally or only location-specific, but OP should be able to get this information and more (including guidance on how to proceed) by calling the association.

https://www.alz.org

36-Hour Day is a worthwhile book. Personally, I couldn't finish it but what I did manage to read was helpful.

Best of luck to OP.
Newaygo
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Re: Caretaker for parents?

Post by Newaygo »

You do not have the training to care for a person with dementia. You can forget about being paid by the insurance company, it will not happen. If your father has long term care insurance, you should find a dementia facility. Your father will be safer and will get the correct professional medical attention. Your father will go through a stage of wandering off and turning on appliances in the kitchen. At the later stages, you will spend most of the day feeding him. At some time he will probably fall and break a hip or leg. Do you know how to bath, toilet, and dress a person with dementia? Would you be comfortable doing this to your father? What are you going to do when he starts to get combative with you? Think in terms of being punched hard every day in the late afternoon like clockwork. Please do not go down this path. It will end badly.
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Re: Caretaker for parents?

Post by Dottie57 »

Newaygo wrote: Mon Sep 14, 2020 9:17 pm You do not have the training to care for a person with dementia. You can forget about being paid by the insurance company, it will not happen. If your father has long term care insurance, you should find a dementia facility. Your father will be safer and will get the correct professional medical attention. Your father will go through a stage of wandering off and turning on appliances in the kitchen. At the later stages, you will spend most of the day feeding him. At some time he will probably fall and break a hip or leg. Do you know how to bath, toilet, and dress a person with dementia? Would you be comfortable doing this to your father? What are you going to do when he starts to get combative with you? Think in terms of being punched hard every day in the late afternoon like clockwork. Please do not go down this path. It will end badly.
Dementia is bad. Not everyone with dementia food the same downward path. My dad had some form of dementia. He could no longer read, or listen to audio books, make a sandwich or follow directions. He was however very sweet, passive, kind and gentlemanly. He could use the toilet himself, but other self-care was iffy.

My mom was exhausted by the time died. My brother and I did as much as we could - still working full time.
be careful of what you take on.
rjbraun
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Re: Caretaker for parents?

Post by rjbraun »

Dottie57 wrote: Mon Sep 14, 2020 9:30 pm
Newaygo wrote: Mon Sep 14, 2020 9:17 pm You do not have the training to care for a person with dementia. You can forget about being paid by the insurance company, it will not happen. If your father has long term care insurance, you should find a dementia facility. Your father will be safer and will get the correct professional medical attention. Your father will go through a stage of wandering off and turning on appliances in the kitchen. At the later stages, you will spend most of the day feeding him. At some time he will probably fall and break a hip or leg. Do you know how to bath, toilet, and dress a person with dementia? Would you be comfortable doing this to your father? What are you going to do when he starts to get combative with you? Think in terms of being punched hard every day in the late afternoon like clockwork. Please do not go down this path. It will end badly.
Dementia is bad. Not everyone with dementia food the same downward path. My dad had some form of dementia. He could no longer read, or listen to audio books, make a sandwich or follow directions. He was however very sweet, passive, kind and gentlemanly. He could use the toilet himself, but other self-care was iffy.

My mom was exhausted by the time died. My brother and I did as much as we could - still working full time.
be careful of what you take on.
Well said. Dementia is indeed bad, but our family experience was more along the lines of what Dottie57 described. It was scary and upsetting, for sure, to witness a loved one's decline, but in our case the person's essence of kindness and empathy, thankfully, very much remained.
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Sandtrap
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Re: Caretaker for parents?

Post by Sandtrap »

Research all of your options.

Us:
MIL is 94 with dementia. 24 hour in home care by licensed caregivers. (very difficult as it progresses)
M, age 92 with advanced Parkinsons, home care by family member for 7 years (difficult) then nursing home.

One of my friends and his spouse took care of his dad on hospice at home for 5 years. It was difficult.

Solutions sometimes have to be creative.
Be sure to guard one's own health and remain balanced and not immersed.
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TN_Boy
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Re: Caretaker for parents?

Post by TN_Boy »

rjbraun wrote: Tue Sep 15, 2020 8:29 am
Dottie57 wrote: Mon Sep 14, 2020 9:30 pm
Newaygo wrote: Mon Sep 14, 2020 9:17 pm You do not have the training to care for a person with dementia. You can forget about being paid by the insurance company, it will not happen. If your father has long term care insurance, you should find a dementia facility. Your father will be safer and will get the correct professional medical attention. Your father will go through a stage of wandering off and turning on appliances in the kitchen. At the later stages, you will spend most of the day feeding him. At some time he will probably fall and break a hip or leg. Do you know how to bath, toilet, and dress a person with dementia? Would you be comfortable doing this to your father? What are you going to do when he starts to get combative with you? Think in terms of being punched hard every day in the late afternoon like clockwork. Please do not go down this path. It will end badly.
Dementia is bad. Not everyone with dementia food the same downward path. My dad had some form of dementia. He could no longer read, or listen to audio books, make a sandwich or follow directions. He was however very sweet, passive, kind and gentlemanly. He could use the toilet himself, but other self-care was iffy.

My mom was exhausted by the time died. My brother and I did as much as we could - still working full time.
be careful of what you take on.
Well said. Dementia is indeed bad, but our family experience was more along the lines of what Dottie57 described. It was scary and upsetting, for sure, to witness a loved one's decline, but in our case the person's essence of kindness and empathy, thankfully, very much remained.
Seen both. Sometimes ailing person is "manageable" for want of a better word.

Sometimes, more of a nightmare/disaster/debacle (e.g. paranoia, aggression, etc)

Either way, the need for 24x7 monitoring becomes exhausting. If they start wandering at night, doesn't matter how sweet they are, the caretaker won't get any sleep (I think that is what finally caused things to snap with one of my caretaking relatives .... basically never got a good nights sleep, and I mean never). Not to mention all the other ways a person with dementia may get into trouble or need help. I kinda think it is better to place the relative before all the family burns out.

For that matter, even if your loved one is in an appropriate care facility, you'll spend a lot of time managing that. But a lot less than if you were doing the work yourself.

You really want the best for them, but I still believe everyone should step back and decide how of the caretakers life goes on hold (i.e. all fun activities gone, everybody exhausted ....) for months/years caring for a dementia patient versus placing them in a care facility (obviously, if money permits). And then think about, if mom/dad were in their right mind, would they *really* want the family to spend all their time taking care of them? I wouldn't want that. It seems like we (we since it might happen to me!) can get more selfish as we age, wanting family and friends to do the things for us we can no longer do ourselves.

It's a hard decision; a lot of people (I've seen this in person, and also posters on this site) get into a situation where they exhaust themselves caretaking (often much sooner than they think; you have to see dementia in person before you believe how bad it is) then the person with dementia has to be placed anyway. Not sure what is gained in that situation by delaying the placement. If there is enough money, 24x7 sitters in the house are an option (maybe 150k a year).
HomeStretch
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Re: Caretaker for parents?

Post by HomeStretch »

I am in a similar situation with parents, one of whom has Alzheimers diagnosed 4-5 years ago. The level of assistance needed has ratcheted up as the years progress but the resistance to outside assistance remains.

At some point the care could easily exceed that which family members can provide. Care needed can be 24/7 for assistance with toileting, meals, hygiene, medications, doctor appts, etc. A watchful eye may be needed 24/7 to insure Alzheimers patient doesn’t wander, fall, TEY to drive if car keys are around, set the microwave on fire, become over ‘friendly‘ towards others, etc. It can be more difficult if the parent with Alzheimers is difficult or combative.

It is easier to get outside assistance in place before a crisis occurs (for example, spouse that is the caregiver becomes ill or hospitalized) than in the middle of a crisis. Some early forms of assistance are grocery deliveries, prepared meal deliveries, cleaning service, laundry service, pharmacy/Amazon pill pack that puts together meds by day, a trusted family member handling finances/taxes/investing to take the load of daily household chores off the primary caregiver who is focused on the spouse with Alzheimers. But the caregiving itself can easily become a 24/7 job that can overwhelm the primary caregiver.
dbr
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Re: Caretaker for parents?

Post by dbr »

One thing we discovered is that the elderly family member may be happier and actually prefer life in a care facility. That is not because care facilities are wonderful but because the benefits of being in one's own home fade and the difficulties surface, including discomfort and insecurity. In our case one such person needs the limited and consistent environment to reduce stress leading to mental disintegration. In another the needed support simply could not be marshalled and that did not help at all. In other cases maintaining a familiar environment may be very helpful.
BarbBrooklyn
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Re: Caretaker for parents?

Post by BarbBrooklyn »

Www.agingcare.com is a wonderful caregiving website.

See an elder care attorney to set up a fully vetted caregiver agreement before accepting any compensation.

Read Atul Gawande "On Being Mortal".

The one situation I observed where an adult child moved in to care for two ill parents ended badly. Adult child gave up an already shakey career and ended up committing suicide after parents' death.

If you DO decide to take on this labor of love, understand that dementia is a progressive and unpredictable disease. You need to have a bright line definde in advance where you say "I can't do this any more".

Your parents will not accept that statement (mine didn't) and they may try to guilt you into continuing. In that situation, you will destroy your physical and mental health.

Read for a bit on agingcare.com before committing.
BarbBrooklyn | "The enemy of a good plan is the dream of a perfect plan."
delamer
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Re: Caretaker for parents?

Post by delamer »

BarbBrooklyn wrote: Tue Sep 15, 2020 10:06 am Www.agingcare.com is a wonderful caregiving website.

See an elder care attorney to set up a fully vetted caregiver agreement before accepting any compensation.

Read Atul Gawande "On Being Mortal".

The one situation I observed where an adult child moved in to care for two ill parents ended badly. Adult child gave up an already shakey career and ended up committing suicide after parents' death.

If you DO decide to take on this labor of love, understand that dementia is a progressive and unpredictable disease. You need to have a bright line definde in advance where you say "I can't do this any more".

Your parents will not accept that statement (mine didn't) and they may try to guilt you into continuing. In that situation, you will destroy your physical and mental health.

Read for a bit on agingcare.com before committing.
This is very well said.
Topic Author
thefoggycity
Posts: 148
Joined: Fri Jan 03, 2014 11:08 am

Re: Caretaker for parents?

Post by thefoggycity »

Thanks again, everyone! Very helpful. Yes, I read the 36 hour day, was very eye opening as are all of your replies.
BarbBrooklyn
Posts: 774
Joined: Fri Aug 24, 2018 9:33 am
Location: NYC

Re: Caretaker for parents?

Post by BarbBrooklyn »

One more thing. In managing my mom's dementia, the best treatment, explanations and support we got came from a series of geriatric psychiatrists.

I would get one on the "team" from the outset.

This is NOT medical advice. We would have saved a TON of mom's money spent on a very ill-advised placement had we gotten mom a psych consult first and had THAT person (as opposed to the Assisted Living's own assessment) describe for us the kind of support mom needed.

And yes, our mom THRIVED in both of her placements. More eyes on her situation, good activities and no more isolation.

Good luck!
BarbBrooklyn | "The enemy of a good plan is the dream of a perfect plan."
jmw
Posts: 66
Joined: Thu Jul 02, 2015 2:01 pm

Re: Caretaker for parents?

Post by jmw »

I'll just mention that it's very hard to prevent your career from taking a severe backslide when you're skipping out from work during the middle of the day. Your absence will be very noticeable even if you make up the time in the evening.
GreenLawn
Posts: 60
Joined: Tue Jul 21, 2020 10:58 am

Re: Caretaker for parents?

Post by GreenLawn »

BarbBrooklyn wrote: Tue Sep 15, 2020 10:42 am One more thing. In managing my mom's dementia, the best treatment, explanations and support we got came from a series of geriatric psychiatrists.

I would get one on the "team" from the outset.

This is NOT medical advice. We would have saved a TON of mom's money spent on a very ill-advised placement had we gotten mom a psych consult first and had THAT person (as opposed to the Assisted Living's own assessment) describe for us the kind of support mom needed.

And yes, our mom THRIVED in both of her placements. More eyes on her situation, good activities and no more isolation.

Good luck!
A happy ending? Wow, that is rare! Lots of gloom and doom around this topic, with placement in a facility seen as a last resort.

I haven't been through any of this, but as an outside observer, placing the person in a facility designed to deal with the problem seems like an obvious choice.

Would you care to add a few more details on how your mom managed to thrive when so many others fail? To go from "very ill-advised" to "thrived" is quite the transition!
dbr
Posts: 33736
Joined: Sun Mar 04, 2007 9:50 am

Re: Caretaker for parents?

Post by dbr »

GreenLawn wrote: Tue Sep 15, 2020 11:27 am
A happy ending? Wow, that is rare! Lots of gloom and doom around this topic, with placement in a facility seen as a last resort.

I haven't been through any of this, but as an outside observer, placing the person in a facility designed to deal with the problem seems like an obvious choice.

Would you care to add a few more details on how your mom managed to thrive when so many others fail? To go from "very ill-advised" to "thrived" is quite the transition!
Not Barb, but one of the examples in my tales was "resurrected" from severe dementia by finally getting to a brain doctor (Alzheimers, dementia, neurology specialist) who recognized that a large part of the problem was inappropriate medications for psychiatric conditions. Fixing up the meds made a difference from being in a memory care unit and getting by in assisted living. You can never stop questioning the medical care someone might or might not be getting. But this is also a time consuming and challenging task all by itself. The breakthrough was arriving at a severe enough condition that some hospital or another finally made some connections. A lot of this comes from the silo model of medical treatment where each piece of the whole is treated independently with very few physicians truly attending to the whole.
BarbBrooklyn
Posts: 774
Joined: Fri Aug 24, 2018 9:33 am
Location: NYC

Re: Caretaker for parents?

Post by BarbBrooklyn »

So, to follow up (and this is NOT medical advice; this is very much financially actionable, because there was no way that I or either of my siblings could quit our jobs to care for mom)...

My mom started to become increasingly...worried and anxious about everything around the time she got to her late 80s. She gave up driving. She turned her checkbook over to my SIL (the MBA). She started calling us every day about "emergencies"--storms in far off places, burned out light bulbs. This was so NOT my mom, who used to keep a tidy list of chores for each of us kids to do when we showed up to visit; this had been quite manageable since my dad died, about 10 years before.

We were all about to lose our minds (and me my job) on the third day running "emergency". I explained to mom that we could no longer drop everything and show up. She didn't get that, which should have been a big clue that something major had changed. But we were dumb.

We placed mom in a "lovely" AL place where another family member had 3 other elderly aunts. They were doing quite well. For a whole bunch of reasons, mom did not do well there and the Director of Nursing appeared to pigeonhole my mom as a "complainer" right off the bat. Just to add, the population of this facility was well aligned with mom's ethnic group; to put it nicely, mom had evolved beyond the passive-aggressive martyr part of her upbringing and was well able to advocate for herself. I think that's what didn't sit well with the DON.

It turned out that mom had something medical going on that she wasn't being forthcoming about; she ended up non-responsive in her room and was taken to the hospital.

Best thing that ever happened. Between the behavior that mom had been displaying both at home and in the facility, we got a psych consult. The psychiatrist interviewed mom and us together and at the end he said to me "your mom doesn't need Assisted living; she needs a place with socialization, good activities and an opportunity to meet other people who are her intellectual equals; she needs some help with med management, but you guys can provide that".

We started looking at INDEPENDENT Living facilities--3 meals a day, light housekeeping and linen changes, hot and cold running religious services (mom went to them all--she was fascinated by religion) and a stock market club! She made friends. She complained about the food along with all the other folks. She went on dinner theater trips and lots of other activities. There was a geriatrics doc on site.

The geriatrics doc realized right away that mom's most pressing issue was unrelenting anxiety. He called in the geri psych who paid a call weekly to this facility.

After one visit with my mom, the geri psych called me and said "your mom needs a complete neuropsych workup."

I couldn't imagine why. Mom was "sharp as a tack". She pressed; I got mom to agree.

Six hours of paper and pencil testing (and an MRI) showed that mom had had an undiagnosed stroke and that she now had the reasoning ability of a 6 year old (I'd be anxious too!). This got us all to see that mom was not just having a "pity party". She had had an insult to her brain and could no longer manage her own life.

The geri psych managed mom's anxiety and the geriatrician managed mom's bp, which had a mind of its own (due to other physical issues that don't obtain here--she was headed for a stroke and there was no way to avoid that).

Mom had a good 18 months in that facility until she stroked out. A broken hip on top of that landed her in a Nursing Home; I was so sad, because you know, people just go to nursing homes to die, right? On top of all that she was diagnosed with Vascular Dementia. Oy.

Mom rehabbed with a vengence and walked with a walker. Again, the geri psych at the facility, looking at mom as a WHOLE PERSON, one with aphasia, some paranoia and lack of executive functioning, got mom on a cocktail of two anti-depressants and a very low dose of anti-anxiety meds which kept her calm, happy and mostly lucid. The Vascular Dementia got worse over the course of 4 1/2 years and eventually claimed her. Along the way, she also had dx's of CHF with the attendant fluid build up in her lungs.

My mother had a good long life and lived to 94 1/2.

My ex-MIL (age 91) has recently moved to a CCRC and is in IL; she's got some vascular and vision issues, but keeps busy and is cheerful when I talk to her.

To summarize; I think you have to figure out what you CAN do and what you WANT to do, not simply bow to the demands (if there are demands) of your elderly parent. There is this thing--Fear, OblIgation and Guild (FOG) that some folks use to manipluate others into doing what THEY want.
BarbBrooklyn | "The enemy of a good plan is the dream of a perfect plan."
GreenLawn
Posts: 60
Joined: Tue Jul 21, 2020 10:58 am

Re: Caretaker for parents?

Post by GreenLawn »

BarbBrooklyn wrote: Tue Sep 15, 2020 12:34 pm So, to follow up (and this is NOT medical advice; this is very much financially actionable, because there was no way that I or either of my siblings could quit our jobs to care for mom)...

My mom started to become increasingly...worried and anxious about everything around the time she got to her late 80s. She gave up driving. She turned her checkbook over to my SIL (the MBA). She started calling us every day about "emergencies"--storms in far off places, burned out light bulbs. This was so NOT my mom, who used to keep a tidy list of chores for each of us kids to do when we showed up to visit; this had been quite manageable since my dad died, about 10 years before.

We were all about to lose our minds (and me my job) on the third day running "emergency". I explained to mom that we could no longer drop everything and show up. She didn't get that, which should have been a big clue that something major had changed. But we were dumb.

We placed mom in a "lovely" AL place where another family member had 3 other elderly aunts. They were doing quite well. For a whole bunch of reasons, mom did not do well there and the Director of Nursing appeared to pigeonhole my mom as a "complainer" right off the bat. Just to add, the population of this facility was well aligned with mom's ethnic group; to put it nicely, mom had evolved beyond the passive-aggressive martyr part of her upbringing and was well able to advocate for herself. I think that's what didn't sit well with the DON.

It turned out that mom had something medical going on that she wasn't being forthcoming about; she ended up non-responsive in her room and was taken to the hospital.

Best thing that ever happened. Between the behavior that mom had been displaying both at home and in the facility, we got a psych consult. The psychiatrist interviewed mom and us together and at the end he said to me "your mom doesn't need Assisted living; she needs a place with socialization, good activities and an opportunity to meet other people who are her intellectual equals; she needs some help with med management, but you guys can provide that".

We started looking at INDEPENDENT Living facilities--3 meals a day, light housekeeping and linen changes, hot and cold running religious services (mom went to them all--she was fascinated by religion) and a stock market club! She made friends. She complained about the food along with all the other folks. She went on dinner theater trips and lots of other activities. There was a geriatrics doc on site.

The geriatrics doc realized right away that mom's most pressing issue was unrelenting anxiety. He called in the geri psych who paid a call weekly to this facility.

After one visit with my mom, the geri psych called me and said "your mom needs a complete neuropsych workup."

I couldn't imagine why. Mom was "sharp as a tack". She pressed; I got mom to agree.

Six hours of paper and pencil testing (and an MRI) showed that mom had had an undiagnosed stroke and that she now had the reasoning ability of a 6 year old (I'd be anxious too!). This got us all to see that mom was not just having a "pity party". She had had an insult to her brain and could no longer manage her own life.

The geri psych managed mom's anxiety and the geriatrician managed mom's bp, which had a mind of its own (due to other physical issues that don't obtain here--she was headed for a stroke and there was no way to avoid that).

Mom had a good 18 months in that facility until she stroked out. A broken hip on top of that landed her in a Nursing Home; I was so sad, because you know, people just go to nursing homes to die, right? On top of all that she was diagnosed with Vascular Dementia. Oy.

Mom rehabbed with a vengence and walked with a walker. Again, the geri psych at the facility, looking at mom as a WHOLE PERSON, one with aphasia, some paranoia and lack of executive functioning, got mom on a cocktail of two anti-depressants and a very low dose of anti-anxiety meds which kept her calm, happy and mostly lucid. The Vascular Dementia got worse over the course of 4 1/2 years and eventually claimed her. Along the way, she also had dx's of CHF with the attendant fluid build up in her lungs.

My mother had a good long life and lived to 94 1/2.

My ex-MIL (age 91) has recently moved to a CCRC and is in IL; she's got some vascular and vision issues, but keeps busy and is cheerful when I talk to her.

To summarize; I think you have to figure out what you CAN do and what you WANT to do, not simply bow to the demands (if there are demands) of your elderly parent. There is this thing--Fear, OblIgation and Guild (FOG) that some folks use to manipluate others into doing what THEY want.
Thanks for sharing! What a great story and an inspiration :happy

Gloom and doom can wear people down, so we need uplifting stories occasionally to bolster morale and encourage caregivers to stay in the ring and fight for the win.
MadHungarian
Posts: 175
Joined: Tue Jan 02, 2018 4:53 pm

Re: Caretaker for parents?

Post by MadHungarian »

An interesting thread, because we're dealing with related issues. My elderly Dad (who lives several hours away) currently needs 24x7 care. My sister is mostly running the show and doesn't really listen to me. Not surprisingly, since she's the most responsible, skilled in these things, is retired, and has a vacation house across the street from them. I'm pretty much the opposite of all those characteristics! Though i am able to manage my Dad's finances and help out a bit, in between trying to keep a job and deal with my own house & personal issues (including aspergers).

My sister has managed to hire 24x7 caregivers, at a cost of several thousand $ / week. It wasn't easy in this pandemic environment, and none of the local caregiving agencies had the staff to take us on. My sister had to pay the caregivers considerably above market rates. But i think she's paying the caregivers 'under-the-table', which is worrying me due to potential legal issues. All this is all being paid for from my Dad's savings, which will eventually run out in a year or two. At which point i fear the under-the-table payments may come back and bite us, if my Dad is still living. But paying the caregivers properly would probably add another 50% to the costs and cause my Dad's savings to run out much sooner. It's a difficult situation in the midst of an ongoing pandemic.
clip651
Posts: 726
Joined: Thu Oct 02, 2014 11:02 am

Re: Caretaker for parents?

Post by clip651 »

MadHungarian wrote: Tue Sep 15, 2020 1:30 pm An interesting thread, because we're dealing with related issues. My elderly Dad (who lives several hours away) currently needs 24x7 care. My sister is mostly running the show and doesn't really listen to me. Not surprisingly, since she's the most responsible, skilled in these things, is retired, and has a vacation house across the street from them. I'm pretty much the opposite of all those characteristics! Though i am able to manage my Dad's finances and help out a bit, in between trying to keep a job and deal with my own house & personal issues (including aspergers).

My sister has managed to hire 24x7 caregivers, at a cost of several thousand $ / week. It wasn't easy in this pandemic environment, and none of the local caregiving agencies had the staff to take us on. My sister had to pay the caregivers considerably above market rates. But i think she's paying the caregivers 'under-the-table', which is worrying me due to potential legal issues. All this is all being paid for from my Dad's savings, which will eventually run out in a year or two. At which point i fear the under-the-table payments may come back and bite us, if my Dad is still living. But paying the caregivers properly would probably add another 50% to the costs and cause my Dad's savings to run out much sooner. It's a difficult situation in the midst of an ongoing pandemic.
Consider getting a quote from a payroll company or two. NannyChex is an example, there are others if you search. I think your estimate is really high, I don't think it raises costs by that much, I think it is a much smaller percent. But get a quote on the costs for the payroll company (they take care of state and local paperwork for you, as well as paychecks) as well as estimates of employer contributions to medicare and social security, etc, before you write off the idea as too expensive.

In addition to being the proper way to handle things, it would mean that the workers would be paying into social security, which will benefit them in the long run (vs. really hurt them in the long run if they have a lot of years of zero earnings with social security over time, particularly if they never accumulate enough credits for medicare). Depending on their income, they may also be able to qualify to buy ACA health insurance, which they may not be able to do without having income they can document.

best wishes,
cj
BarbBrooklyn
Posts: 774
Joined: Fri Aug 24, 2018 9:33 am
Location: NYC

Re: Caretaker for parents?

Post by BarbBrooklyn »

MadHungarian wrote: Tue Sep 15, 2020 1:30 pm An interesting thread, because we're dealing with related issues. My elderly Dad (who lives several hours away) currently needs 24x7 care. My sister is mostly running the show and doesn't really listen to me. Not surprisingly, since she's the most responsible, skilled in these things, is retired, and has a vacation house across the street from them. I'm pretty much the opposite of all those characteristics! Though i am able to manage my Dad's finances and help out a bit, in between trying to keep a job and deal with my own house & personal issues (including aspergers).

My sister has managed to hire 24x7 caregivers, at a cost of several thousand $ / week. It wasn't easy in this pandemic environment, and none of the local caregiving agencies had the staff to take us on. My sister had to pay the caregivers considerably above market rates. But i think she's paying the caregivers 'under-the-table', which is worrying me due to potential legal issues. All this is all being paid for from my Dad's savings, which will eventually run out in a year or two. At which point i fear the under-the-table payments may come back and bite us, if my Dad is still living. But paying the caregivers properly would probably add another 50% to the costs and cause my Dad's savings to run out much sooner. It's a difficult situation in the midst of an ongoing pandemic.
So, the issue here is if dad needs Medicaid in the next 5 years.

Do you live in a state with a 5 year Medicaid look back? Can sis account for where funds went or do they look like cash "gifts" to her, i.e. ATM withdrawals?
BarbBrooklyn | "The enemy of a good plan is the dream of a perfect plan."
rjbraun
Posts: 1682
Joined: Sun Sep 09, 2012 8:22 pm

Re: Caretaker for parents?

Post by rjbraun »

clip651 wrote: Tue Sep 15, 2020 3:38 pm
MadHungarian wrote: Tue Sep 15, 2020 1:30 pm An interesting thread, because we're dealing with related issues. My elderly Dad (who lives several hours away) currently needs 24x7 care. My sister is mostly running the show and doesn't really listen to me. Not surprisingly, since she's the most responsible, skilled in these things, is retired, and has a vacation house across the street from them. I'm pretty much the opposite of all those characteristics! Though i am able to manage my Dad's finances and help out a bit, in between trying to keep a job and deal with my own house & personal issues (including aspergers).

My sister has managed to hire 24x7 caregivers, at a cost of several thousand $ / week. It wasn't easy in this pandemic environment, and none of the local caregiving agencies had the staff to take us on. My sister had to pay the caregivers considerably above market rates. But i think she's paying the caregivers 'under-the-table', which is worrying me due to potential legal issues. All this is all being paid for from my Dad's savings, which will eventually run out in a year or two. At which point i fear the under-the-table payments may come back and bite us, if my Dad is still living. But paying the caregivers properly would probably add another 50% to the costs and cause my Dad's savings to run out much sooner. It's a difficult situation in the midst of an ongoing pandemic.
Consider getting a quote from a payroll company or two. NannyChex is an example, there are others if you search. I think your estimate is really high, I don't think it raises costs by that much, I think it is a much smaller percent. But get a quote on the costs for the payroll company (they take care of state and local paperwork for you, as well as paychecks) as well as estimates of employer contributions to medicare and social security, etc, before you write off the idea as too expensive.

In addition to being the proper way to handle things, it would mean that the workers would be paying into social security, which will benefit them in the long run (vs. really hurt them in the long run if they have a lot of years of zero earnings with social security over time, particularly if they never accumulate enough credits for medicare). Depending on their income, they may also be able to qualify to buy ACA health insurance, which they may not be able to do without having income they can document.

best wishes,
cj
Also, you or your sister should probably look into whether your father needs to get Workers Compensation (WC) coverage if your sister is hiring the caregivers directly. Your state insurance department website may have information on WC requirements. When my family hired caregivers over a certain number of hours, this was a requirement. My recollection is that the homeowner's policy would not provide coverage. Sorry to add more to your (or your sister's) to-do list, but WC coverage is something you would want to address before there's an issue and a worker tries to file a claim.
TN_Boy
Posts: 1826
Joined: Sat Jan 17, 2009 12:51 pm

Re: Caretaker for parents?

Post by TN_Boy »

dbr wrote: Tue Sep 15, 2020 11:50 am
GreenLawn wrote: Tue Sep 15, 2020 11:27 am
A happy ending? Wow, that is rare! Lots of gloom and doom around this topic, with placement in a facility seen as a last resort.

I haven't been through any of this, but as an outside observer, placing the person in a facility designed to deal with the problem seems like an obvious choice.

Would you care to add a few more details on how your mom managed to thrive when so many others fail? To go from "very ill-advised" to "thrived" is quite the transition!
Not Barb, but one of the examples in my tales was "resurrected" from severe dementia by finally getting to a brain doctor (Alzheimers, dementia, neurology specialist) who recognized that a large part of the problem was inappropriate medications for psychiatric conditions. Fixing up the meds made a difference from being in a memory care unit and getting by in assisted living. You can never stop questioning the medical care someone might or might not be getting. But this is also a time consuming and challenging task all by itself. The breakthrough was arriving at a severe enough condition that some hospital or another finally made some connections. A lot of this comes from the silo model of medical treatment where each piece of the whole is treated independently with very few physicians truly attending to the whole.
I have had more luck getting a relative's medications reviewed and pruned down during hospital visits than using any other approach. The hospitalist managing a patient's case in a good hospital is often doing exactly what you want -- looking at the big picture to see what is going on.

Outside the hospital, the specialists all have a reason for THEIR prescription. The general practitioner taking care of a person is reluctant to override a specialist or even consult with them. And rarely do doctors step back and say "hey, you've been taking this medicine for 25 years and really, this med is not recommended for seniors."

Spent a lot of hours on this problem .....
TN_Boy
Posts: 1826
Joined: Sat Jan 17, 2009 12:51 pm

Re: Caretaker for parents?

Post by TN_Boy »

MadHungarian wrote: Tue Sep 15, 2020 1:30 pm An interesting thread, because we're dealing with related issues. My elderly Dad (who lives several hours away) currently needs 24x7 care. My sister is mostly running the show and doesn't really listen to me. Not surprisingly, since she's the most responsible, skilled in these things, is retired, and has a vacation house across the street from them. I'm pretty much the opposite of all those characteristics! Though i am able to manage my Dad's finances and help out a bit, in between trying to keep a job and deal with my own house & personal issues (including aspergers).

My sister has managed to hire 24x7 caregivers, at a cost of several thousand $ / week. It wasn't easy in this pandemic environment, and none of the local caregiving agencies had the staff to take us on. My sister had to pay the caregivers considerably above market rates. But i think she's paying the caregivers 'under-the-table', which is worrying me due to potential legal issues. All this is all being paid for from my Dad's savings, which will eventually run out in a year or two. At which point i fear the under-the-table payments may come back and bite us, if my Dad is still living. But paying the caregivers properly would probably add another 50% to the costs and cause my Dad's savings to run out much sooner. It's a difficult situation in the midst of an ongoing pandemic.
24x7 caretakers are extremely expensive. Is placing dad in a care facility completely off the table? Better to do this now than run out of money.....
Gnirk
Posts: 1311
Joined: Sun Sep 09, 2012 3:11 am
Location: Western Washington

Re: Caretaker for parents?

Post by Gnirk »

OP, my heart goes out to you and your family. You may be able to care for your parent in the early stages of Alzheimer''s. However, by working less or putting your career on hold, you may very well be affecting the amount of social security you will get, and how much you can save for your own retirement. Perhaps family can give your mom a respite, or you can take your dad to respite care or day care once in awhile. Please check with your local ALzheimer's Association, Senior Services or your local Agency on Aging for resources.

My widowed mom had Alzheimer's for 12 years. The first 3 years, we (me, my brother to a small extent, and my daughters) would take turns taking care of mom. It soon became apparent that this could no longer work, she needed 24- hour care. We tried a large assisted living community; after six weeks again, it became obvious this wouldn't work either. She would leave her apartment and wander the halls during the night. We were referred to a retired geriatric social worker who specialized in matching demenentia patients with appropriate care. We ended up finding a wonderful adult family home that specialized in dementia care and was licensed for three residents. She received home-cooked meals, awesome nearly one-to-one care, and lived there for a little over 8 years, through hospice and her death. Family could visit whenever they wanted.

Her LTC insurance covered the costs for four years, the remainder was private pay.

I understand your situation is different, because your mom is taking care of your dad and needs more help. But I would recommend that even if they don't want professional help that they look into it. And if not, perhaps an Adult Family Home, if you have them in your area, would be a good fit for your father. As Alzheimer's progresses, and it can progress rapidly and then plateau, then progress again, your father will need more and more help.
MadHungarian
Posts: 175
Joined: Tue Jan 02, 2018 4:53 pm

Re: Caretaker for parents?

Post by MadHungarian »

TN_Boy wrote: Tue Sep 15, 2020 6:43 pm
MadHungarian wrote: Tue Sep 15, 2020 1:30 pm An interesting thread, because we're dealing with related issues. My elderly Dad (who lives several hours away) currently needs 24x7 care. My sister is mostly running the show and doesn't really listen to me. Not surprisingly, since she's the most responsible, skilled in these things, is retired, and has a vacation house across the street from them. I'm pretty much the opposite of all those characteristics! Though i am able to manage my Dad's finances and help out a bit, in between trying to keep a job and deal with my own house & personal issues (including aspergers).

My sister has managed to hire 24x7 caregivers, at a cost of several thousand $ / week. It wasn't easy in this pandemic environment, and none of the local caregiving agencies had the staff to take us on. My sister had to pay the caregivers considerably above market rates. But i think she's paying the caregivers 'under-the-table', which is worrying me due to potential legal issues. All this is all being paid for from my Dad's savings, which will eventually run out in a year or two. At which point i fear the under-the-table payments may come back and bite us, if my Dad is still living. But paying the caregivers properly would probably add another 50% to the costs and cause my Dad's savings to run out much sooner. It's a difficult situation in the midst of an ongoing pandemic.
24x7 caretakers are extremely expensive. Is placing dad in a care facility completely off the table? Better to do this now than run out of money.....
For now it seems to be. The sister (who's running the show) won't do it. And she does have some good reasons. But the endgame of the path she's taking does scare me.

The payroll agency thing others mentioned would be worth looking into. I know it won't be cheap though -- we're in a high-employer-tax state here with every sort of employer tax imaginable; not very employer friendly. Then of course the sister won't be happy with anything that might conceivably cause any of the hard-to-find caregivers to leave (such as paycheck deductions and such). And if the sister isn't happy with it, it won't happen.
Katietsu
Posts: 3863
Joined: Sun Sep 22, 2013 1:48 am

Re: Caretaker for parents?

Post by Katietsu »

If the OP can help without risking their own financial well being, I would consider doing so in the short run. I am hoping that right now Dad’s condition is such that it can be managed with the help of the OP for the next several months. The coronavirus situation has definitely complicated these situations that were already challenging. I am not going to address the risk of contracting the disease to Mom or Dad from a congregant setting, though that is something that all will need to assess. Unfortunately, manyof the enriching activities and even daily interactions with the staff have been eliminated or diminished thanks to Covid-19 precautions. The ability to have visitors may be severely restricted. And even if visitation practices are acceptable now, they may not be in another couple months. I certainly do not want to add any additional stress to the OP’s decision. I agree with all the concerns expressed by others. I do know that if I were making this decision right now and Dad’s health and my financial well being permitted, I would try to by some time before moving to a facility. I would, however, be researching options for supplementary care in the home as well as possible investigating care facilities now.
Carl53
Posts: 1960
Joined: Sun Mar 07, 2010 8:26 pm

Re: Caretaker for parents?

Post by Carl53 »

The wife of a couple we know eventually moved in with her Mom full time as she felt it was her duty. Husband could not take the dissension Mom brought and would not agree to have her move in with them. Fast forward about five years, full dementia, the wife maybe gets someone to spell her a couple hours a week for a grocery date with husband, and she herself has a lot of difficulty moving around as she has lifted Mom too many times and it has taken a substantial toll. Her out of state brother still offers no assistance. Most recently the husband has been hospitalized with congestive heart failure. This is not going to end well. Mom could have afforded extensive care, but...
TN_Boy
Posts: 1826
Joined: Sat Jan 17, 2009 12:51 pm

Re: Caretaker for parents?

Post by TN_Boy »

Carl53 wrote: Wed Sep 16, 2020 3:34 am The wife of a couple we know eventually moved in with her Mom full time as she felt it was her duty. Husband could not take the dissension Mom brought and would not agree to have her move in with them. Fast forward about five years, full dementia, the wife maybe gets someone to spell her a couple hours a week for a grocery date with husband, and she herself has a lot of difficulty moving around as she has lifted Mom too many times and it has taken a substantial toll. Her out of state brother still offers no assistance. Most recently the husband has been hospitalized with congestive heart failure. This is not going to end well. Mom could have afforded extensive care, but...
It was perhaps the wife's duty to ensure her mom was cared for, but that does not mean it was her duty to do all the work.

Tangential note: when a person gets sufficiently immobile (or somewhat immobile and heavy) and needs a two-person assist, it is dangerous for one person to try and move the sick person. I have a relative that needs a two person assist. I'm strong enough to literally lift pick that person up and move them anywhere needed. But, given her frailty that would be dangerous. Nor would it solve the showering problem, etc. This person is in a care facility and that is the only appropriate place for them.

Maybe the out of state brother chose to prioritize his marriage. And being out of state, help options are limited (obviously there are things he could do). It's also possible he suggested that outside help be brought in, or a facility be considered, but if that suggestion was rejected, well, he chose not to step into the tarpit. Just because the sister thought it was okay to give up large chunks of her life to help, doesn't mean he is wrong to make a different choice.

These are difficult decisions. I would repeat one point, the person doing the work gets to make some of the decisions.

It's amazing to me when mom or dad insists that only family help, even when money is there for other options. And the child agrees. No. You get a vote. You are not a bad person for worrying about your own health, your own marriage, your job etc. A parent sometimes has to tell a young child "no, we are not doing that." When a grown child becomes a caretaker, sometimes they have to tell their parent "no, we are not doing that."
GetSmarter
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Re: Caretaker for parents?

Post by GetSmarter »

thefoggycity wrote: Mon Sep 14, 2020 3:20 pm Dear Bogleheads:

Have any of you modified your work to care for another family member? Has anyone done it long term?

I am considering helping my parents as my dad's Alzheimers progresses and my mom needs more and more help. They've made it clear that they don't even want to find help through their long term disability insurance and wish for "family" to be the ones to help. I am open to doing this and want to help take care of them. They said they would be willing to compensate me somehow either personally or through their long-term disability insurance. I am not sure about those details yet, but would love to hear from folks who have done similar things and if looking back, what are the pros and cons of that decision to either press pause on your career or work part-time.

Thank you!
I gave up work to care for my mother, who was very sick. I prefer to skip the details. It was beyond 24/7 hard and I needed help in short order but the demands were so great it's not like there was time to interview help. In my mom's case, she soon qualified for hospice and this most difficult situation didn't last more than a few months. Had it, I absolutely don't know how I possibly could have sustained my own health and sanity. I wanted to be there for my mom, and on retrospect I do not have regrets. But you need great health, patience and stamina. If I were you, before committing, I'd create a plan that creates added help and time-off for you. I also went to a caregivers support group, which was helpful though the subject was always sad though we'd try to find humor and often did. In time, after my mom's passing, I helped my dad often. I'd re-injure a bad shoulder all the time, and be in pain, helping lift him, move him. My automatic reaction was to help my parents and I stepped up. My brother did nothing to help. Nothing. At the time, there was no time to resent the unevenness but be aware if you have family that doesn't step up while you do everything, you definitely take notice. Now that both parents are gone, and I'm tired from giving at least 4 years of my life to prioritize their needs, I have to say, I look back with mixed feelings. I had benefit in that it's a very loving connection and mutual appreciation that is recognized. And I gave up interesting work, a chunk of my fifties when I was in great health, gave up income because I felt a duty to care for my parents who raised me. My brother and other family kept working, earning, socking away. It also hurt my own relationship. I think this hard work should be shared. With other family, or hired help. You must take care of yourself. You must. Find the balance somehow. If you can, find your options for help before you commit. Discuss with other family that may chip in here and there. Personally, knowing what I went through (but every case is unique) if the family has enough money, I'd hire help and visit often. Or if possible build a guest house in the back, hire help, and check in multiple times a day. Don't expect to do this alone. That's my advice. Caregivers are angels that deserve a massage, and all the help they can muster.
“The more simple we are, the more complete we become.” August Rodin | | “The less I needed, the better I felt.” Charles Bukowski
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