How do you handle the care of an elderly family member?

[sunshineandpinot]

pdq

My Grandma is 96 years old with three children all in three separate parts of the country. She lived by herself until about 3 years ago when it became apparent she needed to live closer to family.  So at the time, my mom offered to bring grandma to the city where we live.  She moved into an independant living community and was doing just fine. I live here and visit her often with my two girls. My brother and his wife also live here and try to see her often as well.  My mom has everyone to her house about 2x a month for a big family dinner.  However, about 2 years ago Grandma's health really declined and she's become difficult to care for. Her hearing is almost non-exsistant which makes everything difficult. She has multiple doctors appointments every month (If I'm being honest, 1-2 a week it seems) which require my mom to take her to and from- they take up an entire afternoon. It's very time consuming for my mom and it's making her miserable. (I should mention my mom also works- we have a family business.) While she loves her mom, the role of caretaker is not a role that comes naturally to her. Patience is not her strong suit :/ 
Grandma has 2 other children.  And it seems they just do not appreciate the time and energy it takes to care for Grandma. They come visit her once a year. They of course stay with my parents, who cook and wine and dine them. Mom wants to feel appreciated. 
My aunt and uncle are VERY financially stable- there is no question to that. My parents also do very well, but are not at the level of my aunt and uncle. But to be very clear, money is not an issue for any of of them. 
My aunt and uncle are here for their annual visit and last night ended up a huge fight, yelling, tears. It was ugly. 

Before I list the options that have come up, I'd like to hear some outside thoughts or maybe experiences from other people who have dealt with similar situations. 

Moving Grandma to a different city is not an option. Hiring a full time caretaker is not an option either, I do not think :/

And sorry, I don't mean to ramble. I'm having trouble getting my thoughts lined up. 

[krystee]

Your mom could figure out now many hours a month she is caring for your grandma and what it would cost to hire a caregiver for those hours, and then split it in three. Your mom can then choose to still spend that time there or she can pay a caregiver for her one-third, and the aunt and uncle could pay for their thirds. (Unless your grandma has money that could pay it?) If she has a house that will be sold after she passes, they will get paid back.

[sunshineandpinot]

Mar 1, 2015 9:54:00 GMT -5 krystee said:

Your mom could figure out now many hours a month she is caring for your grandma and what it would cost to hire a caregiver for those hours, and then split it in three. Your mom can then choose to still spend that time there or she can pay a caregiver for her one-third, and the aunt and uncle could pay for their thirds. (Unless your grandma has money that could pay it?) If she has a house that will be sold after she passes, they will get paid back.

That is an excellent idea. I like it, thanks. 
Grandma does have plenty of money and could pay for something like that. 

[krystee]

Or, she could move from independent living to assisted living, which might be safer for her. Or she could move in with your mom or one of the grandkids, and the money that had been spent on the facility could go toward a caregiver.

[sunshineandpinot]

Mar 1, 2015 9:56:22 GMT -5 krystee said:

Or, she could move from independent living to assisted living, which might be safer for her. Or she could move in with your mom or one of the grandkids, and the money that had been spent on the facility could go toward a caregiver.

Girl, you are in my head!!! We actually just moved her from independent to assisted. It's actually the same building/complex- it's very nice. As nice as it comes. And she hates it :/  

[truckentruck]

I'm sorry. My parents are/were in a similar position and it sucks how the responsibility and stress are not shared equally. In the case of my grandmother, after my parents had her living with them and doing everything for 2 years, it reached a breaking point and the agreed-upon solution for now is 3 out of 5 of my dad's siblings have agreed to split 1/3 of the year to be primary caretaker. My grandmother lives in the home of one of the three children for 4 months at a time, and that person is the designated appointment person for that stretch of time. It's not perfect, especially when the 2 siblings that don't take time as primary caregiver are the ones most financially well off and seem to have great job flexibility, so there is still resentment. Those siblings have some issues of their own though that I guess maybe the rest aren't privvy to. It's better than it was before bow that they share the designated caretaker role, but it's not perfect. I think there may have been some money agreement as well, but I'm not sure. I don't know if there is ever a situation that goes perfectly when caring for aging parents. I hope in your grandmother's case the siblings that don't contribute equally see the toll it is taking on your mom and step up. Caring for the caretaker is extremely important.

[sunshineandpinot]

Mar 1, 2015 10:03:06 GMT -5 truckentruck said:

I'm sorry. My parents are/were in a similar position and it sucks how the responsibility and stress are not shared equally. In the case of my grandmother, after my parents had her living with them and doing everything for 2 years, it reached a breaking point and the agreed-upon solution for now is 3 out of 5 of my dad's siblings have agreed to split 1/3 of the year to be primary caretaker. My grandmother lives in the home of one of the three children for 4 months at a time, and that person is the designated appointment person for that stretch of time. It's not perfect, especially when the 2 siblings that don't take time as primary caregiver are the ones most financially well off and seem to have great job flexibility, so there is still resentment. Those siblings have some issues of their own though that I guess maybe the rest aren't privvy to. It's better than it was before bow that they share the designated caretaker role, but it's not perfect. I think there may have been some money agreement as well, but I'm not sure. I don't know if there is ever a situation that goes perfectly when caring for aging parents. I hope in your grandmother's case the siblings that don't contribute equally see the toll it is taking on your mom and step up. Caring for the caretaker is extremely important.

wow. That last sentence is very insightful and even really helpful for me to read. Thank you. I'm glad you all have found a situation that is somewhat working.  It's nice to hear that my family isn't the only one going through this. 

[lurknomore]

There are several of us here caring for elderly relatives in many different capacities. To speak of assisted living...I think her hating it is especially common. I don't know of anyone who enjoys living there. But it's one of those things. I've never known one person in assisted living who didn't ask to go home on a daily basis. That seems to be especially true if dementia is starting to become an issue.

krystee has some great suggestions for splitting up care. Your mom should also talk to the facility where she is staying and see what resources they have available. I know at my FIL's place, they have shuttles that will take you to dr appointments. They also have many doctors, therapists, etc that come in house. See what is available where your Gma is. You may be surprised that there is stuff there to help your mom out.

I will also say that your mom will always have the burden of caring for your Gma. We live out of town, whrereas DHs sisters are local to their dad. We can only throw money at the problem and have DH visit occasionally. When he visits he says with his dad (he's in independent living still) or at his sisters but he's careful not to become a pain (I hope anyways!). Your mom needs to explain to her brother and sister that their visits give her a much needed break and that while they are welcome to stay with her, she is taking a few days off from entertaining. My guess is that her siblings have a hard time seeing her this way. My g'parents live on their own and my aunt who lives nearby is their primary care taker in a daily basis. My lives 600 miles away and rarely comes to visit (even tho we live here with her grandkids). It is hard for my mom to see her parents aging and tho she won't admit it, is in total denial. When she does come, she stays with my g'parents and I suspect still leaves 90% of stuff to my aunt. It sucks.

Best to you and your family. Getting old sucks.

[sunshineandpinot]

So money is becoming the issue. Grandma has plenty of money; there will be a hefty inheritance, to be split evenly in thirds. And my mom is becoming very bitter about that. She feels that it is unfair that she is spending hours and hours caring for grandma, not to mention the emotional toll it is taking and at the end she'll receive the same amount as my aunt, who visits grandma 1x a year.
Mom wants to feel appreciated.... and I am having a very hard time figuring out how she can be appreciated, putting the money aside.
My aunt and uncle (unless some sort of big talk has taken place this morning) say that is the way the will has been written and they don't feel they should deviate. Grandma also doesn't appreciate the time/stress my mom has taken on. Dementia and depression are kicking in.
You are so right, lurknomore, getting old sucks.

[explorer2001]

The whole situation is hard. Since I don't have any answers here are two stories.

Grandpa fought going into assisted living ( really skilled nursing) for years. He wanted to be independent and continue to call the shots. It was really hard in part because he was mentally very sharp and relatively young when it just wasn't feasible for Grandma and local family to continue to care for him even with help from nurses and CNAs coming in. He basically fought it until he nearly exhausted their resources and was on Medicaid relatively soon after going into the nursing home. BTW Parkinson's sucks.

Everyone continued to visit often Grandma daily. But losing authority and autonomy really galled Grandpa. His health improved because he was getting the care he needed but it was never what he wanted. I think he wanted to be robust and fiesty until the end and sadly his disease slowly trapped him in his body taking away so much of what brought him joy and pleasure. Grandma's health also improved because she was able to take care of herself and was less exhausted and injured from trying to care for Grandpa when she really couldn't.

Fast forward seven years, Grandma moved into the assisted living side of the same facility Grandpa was in. She was perfectly happy to move. She already knew the place and had friends there from all the time she spent visiting Grandpa over the years. She likes not having to cook and clean any more. She isn't very ill, just in her 80s and not very healthy. She participates in the facilities events, goes to church with her friends, spends time with her kids, grandkids and great grandkids. Grandpa chose to switch to hospice care and passed shortly after Grandma moved. Everyone said it was in part his relief knowing Grandma would be taken care of and safe that helped him finally let go.

[ECB]

What does she hate about the assisted living? I would imagine a part of it is the loss of independence. Is it possible (if it's not done already) to have her meet with a therapist so that she can at least talk about some of this?

Or- the fact that dementia is setting in, that's going to play a role in her dislike too.

I don't know that I would move her into your mom's home. I'll save the long story, but FIL has been taking care of MIL for years. She recently spent 3 months in a rehab facility. While he still had to take her to appts, etc, not having her in the house gave him freedom. Freedom he hadn't had in years (and that was being taken away from him the more demanding and depressed she became.). Then after she came home from rehab, she was a shell of who she was before and his ENTIRE LIFE was now about her. Even w/ people coming in to help and looking into a PT caretaker, his life was entirely about her.

If your grandmother is becoming worse, even w/ caretakers coming to the house, your mom's life would probably become even more about her mom. At least at an assisted living home, there is more regular care for her mom - even if she still has to help her get to and from appts.

I just personally wouldn't do it. After seeing what FIL went through, I wouldn't want to bring someone into my home to take care of them.

[lurknomore]

Mar 1, 2015 10:36:57 GMT -5 sunshineandpinot said:

So money is becoming the issue. Grandma has plenty of money; there will be a hefty inheritance, to be split evenly in thirds. And my mom is becoming very bitter about that. She feels that it is unfair that she is spending hours and hours caring for grandma, not to mention the emotional toll it is taking and at the end she'll receive the same amount as my aunt, who visits grandma 1x a year.
Mom wants to feel appreciated.... and I am having a very hard time figuring out how she can be appreciated, putting the money aside.
My aunt and uncle (unless some sort of big talk has taken place this morning) say that is the way the will has been written and they don't feel they should deviate. Grandma also doesn't appreciate the time/stress my mom has taken on. Dementia and depression are kicking in.
You are so right, lurknomore, getting old sucks.

I hate to say it but your mom is in the wrong here. A will is about a lifetime. Not about the last few months/years. Your mom wants to feel appreciated and a monetary payout shouldn't (and prob won't) help with that. That money belongs to your Gma, not her kids, and it should be used to care for her in her old age. your mom should tap into that resource and get her and her mom the help they both need. Does your mom have a power of attorney to use ans spend it for her care? Is there a healthcare poa in place? If not, you mom and her siblings should contact an attorney ASAP and get those documents in place while your Gma is still lucid and can express her wishes to her children. I'm guessing with so much resentment already built up, and the view that this is about the money and not the care of their mom, things will only get worse once your Gma passes. But in the meantime, your mom should be getting some support. And if it needs to be bought and paid for, so be it.

GL. Sounds like a crappy situation to be in.

[sunshineandpinot]

explorer2001, thanks for sharing your story. Parkinson's is so cruel. It sounds like your grandma is in a really good place. I'm so glad to hear that!
ECB, my mom has entertained the idea and I really think it's a terrible one. Grandma just hates the loss of independence and honestly, nothing is really going to make her happy :/ The loss of her hearing is so challenging (she's seen the best of the best with no great result)

[Pom]

Based on what you've written, I think that Assisted Living is probably the very best option here for her and your mother. The facility that housed my FIL had different levels of care, so dependent on the level that they determine your grandmother's health is, they can manage her care better 24 hours each day (often less costly than providing in home care), most doctors appointments, etc...are also handled right at the facility. Everyone has already made great points, and be assured that no one WANTS to go to Assisted Living or a full-time nursing care or place their loved there. That doesn't mean it is not the right choice.

[sunshineandpinot]

Thanks lurknomore, I needed to hear a different perspective. I really hope they can come to some sort of resolution where my mom isn't so resentful. The assisted living will take g'ma to dr appointments and I know someone could be hired to assist. I honestly think that's what they should do. And if aunt and uncle and mom don't want to pay for it then I really think mom should be compensated; paid what they would pay someone. But she wants her siblings to come up with this idea.... not her tell them. ykwim? The whole "being appreciated" thing.

[ECB]

That's exactly it - she's not going to be happy with anything. That was a part of the problem FIL was having. He had been on a LONG slippery slope for, really, 13 years. And I think he felt it was his "duty" to take care of her. And I know he did his best. But - there were issues at hand with her that were out of his scope and I think things got missed (like dealing w/ her depression). And it got to a point where she wasn't happy about anything he did and the idea of changing things (like putting her into a home, where she had never been) - I... well, never in a million years would that have happened.

That's why I wouldn't take her OUT - once she's out, she's not going back.

Plus, if your mom is already upset and doesn't feel appreciated, it will absolutely only get worse if your grandmother moves in. It really will.

Is it possible for your mom to talk to someone? I hate the thought that this could all destroy her relationship w/ her siblings. And that it all boils down to $$. I feel like your mom needs help too.

[Pom]

Aplaceformom.com helped us tremendously with the whole process: helping us make a short list of care facilities that would be appropriate. Locating a facility, supporting us, answering questions, lots of great articles on their site. I can't say enough good things about them and all at no fee to your family. As lurk said, a medical and financial POA is going to become crucial to your grandmother's situation considering all the different opinions and concerns.

[livinitup]

My grandmother had 5 sons. She moved into an in-law suite at my parent's house when she was in great health. Years later, when she deteriorated,100% of her health care needs were managed by my mother. No one helped, not even my father (well, not more than a little). All five sons allowed themselves to be completely oblivious, overwhelmed and in denial. One son had a wife, and she talked with my mom (out of state) and was very nice and a bit of an advocate.

From what I've heard, it's not that uncommon.

[lime]

Mar 1, 2015 10:36:57 GMT -5 sunshineandpinot said:

So money is becoming the issue. 

This is why I like the idea of her getting paid for the time she puts into managing grandma's health. This could even be back dated to include the past 3 years (I think that's how long it's been?). 

[sunshineandpinot]

Mar 1, 2015 11:45:02 GMT -5 lime said:

Mar 1, 2015 10:36:57 GMT -5 sunshineandpinot said:

This is why I like the idea of her getting paid for the time she puts into managing grandma's health. This could even be back dated to include the past 3 years (I think that's how long it's been?). 

I do too. I just want to make sure outsiders think that is fair as well.  Obviously I have a vested interest bc it's my mom and I see the toll it's taking on her. And I also really wish my aunt and uncle would come up with this on their own. 

My mom would rather my g'ma not know about this.... she doesn't need the money now. Her preference would be that when grandma passes, the "money" would come to her off the top, before grandma's remaining assets are divided into thirds. 

[lime]

Mar 1, 2015 11:48:50 GMT -5 sunshineandpinot said:

Mar 1, 2015 11:45:02 GMT -5 lime said:

This is why I like the idea of her getting paid for the time she puts into managing grandma's health. This could even be back dated to include the past 3 years (I think that's how long it's been?). 

important stuff you might not want quoted

This is basically how it is going to work with one of our elderly relatives. 

I absolutely understand and back your mom with wanting to feel appreciated, because this shit is hard. Big hugs to her. 

[ECB]

Mar 1, 2015 11:48:50 GMT -5 sunshineandpinot said:

And I also really wish my aunt and uncle would come up with this on their own.

But they might not. Don't operate on what you WISH would happen. Is there a neutral party who could talk to them?

[starlily]

Mar 1, 2015 11:48:50 GMT -5 sunshineandpinot said:

Mar 1, 2015 11:45:02 GMT -5 lime said:

This is why I like the idea of her getting paid for the time she puts into managing grandma's health. This could even be back dated to include the past 3 years (I think that's how long it's been?). 

I do too. I just want to make sure outsiders think that is fair as well.  Obviously I have a vested interest bc it's my mom and I see the toll it's taking on her. And I also really wish my aunt and uncle would come up with this on their own. 

My mom would rather my g'ma not know about this.... she doesn't need the money now. Her preference would be that when grandma passes, the "money" would come to her off the top, before grandma's remaining assets are divided into thirds. 

I think your mom needs to let go of this idea. Given what you've said is not likely to happen and it will just fuel her resentment further.

I'm POA for my mom, who has severe dementia, and while I don't do her daily care I have had to deal with a lot of issues that have arisen, took time off work during hospital stays, visited frequently even though she's six hours away, etc. Meanwhile my older brother flies in for one weekend a year, because that's all my SIL will "allow" him to do, yet they expect a full half of my mom's eventual estate. I'm allowed a yearly stipend under the POA, but I don't take it because I worry they'll get mad and find a way to use that against me. It really, really tore away at me the first two years that they never once said thank you or offered any more help. Even after a conversation with my brother where I laid it all out, nothing changed.

If your aunt and uncle haven't changed their attitudes by now, they probably won't after their mom dies. Your mom needs to do whatever will reduce stress for herself, like encouraging your grandmother to outsource what she can, so that your mom can have a better chance if just enjoying the time she has with her mom.

[delawarejen]

I think it's fair for your mother to be paid. My mother was paid for my grandmother's care, from my grandmother's funds, while she lived in a house near to my mom. Luckily my mother and her siblings were generally in agreement on my grandmother's care and there was money available. Also, the siblings had discussed this issue at length over the years. I worry about what will happen for me with my 4 siblings when it comes to our (divorced) parents and their elder years. I'm certain I'm going to end up responsible for at least one of them, as my healthy and independent mother has already decided at 65 that she no longer wants to live alone and so we're going to be sharing an apartment now (because I'm the only unmarried one she can stand).

She moved to a facility and then my mother moved away, so I stepped up as none of her children were local. The current responsibilities are not time consuming, so I preferred not to be paid for my time, but my uncle sends me random checks here and there as a thank you. I hold and manage her spending money while my uncle manages her overall finances and sends me spending money as needed.

As far as the decision to move into a facility, if you can afford it, it's better to do it before it becomes a crisis. Mine went to assisted living, and then a locked dementia unit. If it weren't for my mother, my grandmother would have been in assisted living years earlier.

(Also, when people ask why I save so much of my money for retirement? This is why. Money buys you options in old age. I'd rather live a lesser life now and have money when I'm old.)

[miniroller]

I'm sorry not to offer help, just wanted to let you know you & your mom have my utmost sympathy It SUCKS because the other siblings have No Idea the work, effort, frustration, $$$, etc. that is involved. In my experience, they don't really want to! They're just fine letting the one sibling handle it all, drop in once/yr, & shrug their selfish shoulders while plugging their childish ears and ignoring the reality that's happening. I don't know that it's possible to make them understand without taking a walk in your mom's shoes for a month, which I'm sure isn't possible. Again, so sorry not to offer a solution, but I feel you... Hard

[ECB]

The thing with the money - I feel that some attitudes about the $$ need to shift.

Your mom is using her time and possibly money to take care of grandma, right? Your mom's time IS worth something. And on that front, if she wants to talk to her mom about some kind of payment/stipend, I think that's fair. And yes, that should happen NOW, while her mom is still lucid.

But it was said above - this is grandma's money right now and to already be talking about when she dies, and how your mom should get more at that time... no. The will is the will. And if your mom doesn't want to talk to your grandmom about this and just wants her brother and sister to agree "yeah, sure, we'll give you more of our share". I don't know. In the end, this is what is going to tear the family apart.

I guess I'm not really sure why your mom is equating money w/ appreciation anyhow (which, though, is why I feel it might help for her to talk to someone, a therapist, someone, to work all this out in her own head).

BUT - the reality of taking care of her mom, if she wants to be paid for that, THAT is fair. But she needs to talk to her MOM about it. She can't sit around and expect everyone else to "realize" what's fair and not fair and then act accordingly.

[Deleted]

It sounds like it would be good for an assistant to be hired to take her to appointments. Especially since grandma has plenty of funds to pay for it.

[Deleted]

Just wanted to come in to offer support. When something like this happens, you really see the best/worst in family members. It's uplifting sometimes, and a bitch other times (as you're seeing). without getting into the details, we had a similar situation where multiple siblings (plus spouses) were in position to assist in some manner - and there was about hald the siblings assisting to various levels, with 2-3 shouldering majority of the physical, time, and financial burden (large, large family). It's caused some major, major resentment and issues (and some marital issues with some of siblings + spouses). Very sad.

I would just say - you loose the right to be pissed if you won't discuss it, and one has to draw the line in the sand for what one is willing to deal with.

[ssmjlm]

You could hire personal care aids to care for her. They will take her to appointments. Costs vary based on amount of care. I know for my nana who needed 24hr care it was around $12k a month, plus the cost of her assisted living (she was waiting for a spot in the Alzheimer's building).

[lys]

Time to use some of grandma's money for more paid assistance. Your mom will carry most of the responsibilities - but she is not the one who has to actually DO everything - pay someone else to do some of them.
The siblings who live away do not fully understand what and how much she is doing and how it impacts her - and your mom needs to TELL them just those things.
Your mom also needs to have breaks - plan a week out of town every so often and have one of the siblings come and stay at the house while they are gone - or if they won't do that - just go with more paid time for personal aides while away.