Elder Care vent...does Your Family Have Plans for Your Elderly Relatives?

Updated on February 26, 2013
J.B. asks from Boston, MA
23 answers

Do families actually plan care in advance for their elderly parents or do they all just sit around expecting their 90-something-year-old parents to live independently forever and then wait until illness strikes to think about what to do after they realize they have no plan? Honest to God I don't know what is wrong with people! My GMIL is 93 and lives alone. She was totally fine until a few months ago but has had two illnesses requiring hospitalization and rehab in the past few months and her three children (her daughter, who lives her, my FIL and her other son, who live out of state) can't get their sh*t together and deal with this. These are all successful, capable, mature people with tremendous resources and there are lots of viable options for how to care for her, from having one of the kids stay with her at her house or hiring a caretaker to be at her house to moving in with one of the children to moving to assisted living. The only thing off the table is living alone and yet that's where she is now, fresh out of rehab, still in her house with clear signs of ongoing illness and fatigue. It's abundantly clear that GMIL can't live 100% on her own anymore and needs some kind of care, no matter how stubborn she is about wanting to stay at home. I can maybe understand the family being caught off guard the first time (although at 93, did they really never anticipate serious illness?) but you would think that after that, they would have put a plan in place for the next illness. Nope! My husband and I live closest and do all we can (he tries to stop in and see her on the way home from work every day, I’ve been sending over meals and visiting on weekends) but we’re working and raising children so there’s only so much we can do.

Anyway…my husband has found himself in the middle of this mess, telling his father and uncle that they need to talk to their sister (who because she is local is in charge) and do something immediately about her being at home alone and it’s this relentless circus of phone calls and e-mails and in the meantime, GMIL is at her house, still ill, but not wanting to go anywhere else either.

Have any of your families navigated these waters before? What have been your takeaways from what was done well and what you would have done differently? I’m keeping my own parents in the loop on this and it’s opened up conversations about what we’ll do when they’re older, but my mom is a geriatric nurse so she’s already ahead of the game with anticipating what happens with elder care and preparing for when it’s her turn.

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So What Happened?

ETA: Finances are not an issue. GMIL has plenty of insurance and financial resources to cover her care, but at 93 and ill isn't the person who is in the best position to pull the trigger on getting that care. And good point on my mom - she counseled my FIL for about an hour last week via phone about how to navigate the care hierarchy at the rehab and locate various resources for finding in-home care or assisted living if that's the path they want to take but no one can make a decision.

Thank you everyone - judging from the responses, this is not unusual and they're not in as bad a situation as others. I didn't want to write a novel in the question and feel weird sharing too much info about my ILs on the internet but should have clarified a few things. GMIL is actually very sweet, selfless and compliant and doesn’t want to burden anyone. She is at home because she’s most comfortable there but also because doesn’t want to have people interrupt their lives for her so in that sense, she needs a bit of a firm hand saying “it’s a burden for me to not know that you are safe and cared for and to wonder whether or not you’re vomiting or not eating. It will ease our worry to make sure that you are being cared for. You choose where, but being here all the time by yourself isn’t the right option right now. Maybe when you’re better but right now you’re still kind of sick and we will take care of you just like you’ve taken care of everyone else your whole life.” Before becoming ill a few months ago she wanted to meet with her children about getting some sort of help at home because she wasn’t feeling as confident in her ability to be 100% independent but she got very sick before that happened. I guess what bugs me is that the three children have yet to get together and put together options for the inevitable so that when she gets sick, like 93-year-olds are wont to do, it’s not a sh*t show every time. Things like having a bedroom and bathroom ready at her daughter’s house (which are there they just need to be clean up and readied), having a list of in-home care providers, or having researched assisted living options. Staying in her home is an option, with appropriate care, which takes time to set up. So you would think that in the meantime, in between rehab and home-based care, the kids would coordinate having her stay with her daughter for a few days or that someone would stay there. But no, just lots of phone calls and e-mails and still no decisions.

Anyway…I’ll continue to have my husband urge them all to set up a family meeting and in the meantime, will get my mom’s opinion on a specific list of local in-home care agencies so we can pass along some information when they’re ready to address that.

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answers from Modesto on

I have a 94 yr old grandpa still living alone except that just recently his 97 yr old sister had to move in with him! Basically Grandma needs to voice her needs, do you talk to her? Talk to her and find out where HER head is at and what she would like to do. Since you are an IN-LAW it might be less emotional for YOU and YOU might be able to break that barrier that you believe is in place.
Talk to Grandma and then let us know what she says..

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answers from Boston on

Hi! I am the monster who didn't do anything for her elderly mother, just ask all her friends and neighbors. I'm sure it's easy, it sure sounds like it's easy, everyone felt free to tell me how easy it was. But they didn't have to deal with the truth. The truth is the elderly do not have to do anything they do not want to do. And my mother did not want to do anything. She didn't want anyone in the house, she didn't want Meals on Wheels, she didn't want the visiting nurse, she didn't want one of those LifeAlert things (she assured me she wouldn't use it and guess what- she didn't!), she didn't want housekeeping, she didn't want an aide, she wouldn't even let the social worker in the house. She wouldn't move in with me or my sister, she wouldn't consider moving anywhere. And she didn't have to because she didn't want to and she had that right.
I lived four hours away. I did what I could do. I even did things like drive the four hours each way to bring in her mail because she didn't want to bother a neighbor to get it for her. Have you ever driven eight hours to bring in the mail? She wouldn't have her drugs come by mail so if she needed something I went to get it, yes sometimes multiple trips a week. I'd go stay for a few days only to discover later she was telling people she hadn't seen me in MONTHS! I paid her bills, I bought her food, I cleaned her house, I put my own family in jeopardy trying to cover my mother's needs. I did the best I could with what I had- it had to be her way and only her way. And she wanted to stay alone, in her house.
I am not resentful about what I did for my mom. But the deep resentment I have for all those people who told me I had to "do something" will stay with me always.
Please, please just do what you can for her. Find what resources you can. I found my best source of info came from the social worker at the Council for the Aging. I don't know what it is called here in MA. Try calling the town senior center and ask questions, they can point you in the right direction. There is SO much out there, just start digging. And maybe she will be willing to accept some kind of help. Her life would be so much better...
God bless you for caring and good luck!

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answers from Jacksonville on

I don't know, but I'd bet there are a lot of people with their heads in the sand on this issue. But, what you may not be giving enough weight to (I don't know, you only mentioned it in passing) is that it sounds like your GMIL wants to stay home. I think most elderly people do. Wouldn't you?

And, unless she has dementia and it has been determined that someone else has guardianship or whatever over her--legally, she is still the person who calls the shots for her life. So what are they going to do? Make a decision and kidnap her to live somewhere else? Force themselves into her home?
I don't know, but isn't it possible that they have had more discussions about this than you are privy to, and GMIL just doesn't want to move? What are they supposed to do about that?

My grandmother lived until she was 93. She spent her last 3 years or so in a nursing home. Until that time, one of my uncles lived with her. But he had pretty much ALWAYS lived with her---only left home for a brief time over the years. He had some issues of his own and together they managed to make it work. Eventually, it stopped working and she had to go into a home. But I'm sure she would have rather not had to do that... but at some point, she recognized that it wasn't possible anymore.
I'd suggest that your GMIL will eventually recognize that too. Sometimes it is hard to stand by and watch someone else be stubborn when you think it is not in their best interest. Would it be more in her interest for her children to fight with her and damage their relationships with her (and possible each other) over this, at this point? I am not suggesting that I have the answer, but simply am looking at this from a slightly different perspective. It isn't as cut and dried as you seem to want to present it.

And I'd suggest that that is exactly why nobody has a "plan". They may have general ideas about what they think would be workable... but ultimately, GMIL (or whomever the elderly person is---for the rest of us who must face this eventually) is the one who is probably going to be "the decider" about where she lives, and about who lives with her. Everybody doesn't get a vote. It isn't a democracy. It is HER life.

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answers from Dallas on

I had to relate a story my pastor tells. He was acting Chaplin at a hospital when he was sent to an elderly man's room to counsel a family. The family standing around we're in their 70s. The patient was 100. He was really not well. Pastor tries to comfort them and they were really upset. Their main fret was that it was all so SUDDEN! He had to bite his lip to keep from laughing!
I have no advice. Except knowing what we know now, we will be setting things up at 60. My H has nursing home ins through his employer now.

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answers from New York on

My aunt arranged for full-time home health care for my grandfather for the last eight years of his life. It was a lot of work for her to manage this -- it's not like you can just call up an agency and then that's it -- but she never regretted it or complained. My grandfather died in the house where he'd lived for the past 30 years -- my aunt lived right around the corner.

We also have some good family friends who have moved their mom (who's in her 90s and in failing health but mentally sharp as a tack) into a basement apartment in their house. There is a room in that apt. for a home health aide.

Both of these -- plus a really nice assisted living place -- seem like the best options for elder care, but they are NOT cheap. And you'd be surprised by what insurance WON'T cover. And all of them do require a point person to handle logistics. But it's what I eventually want to do for my mom, years and years down the road. It's what the elder generation deserves.

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answers from St. Louis on

My first take away from your post is the GMIL should have prepared for this day herself. Does she have money put away for her care?

I have tons of anger and resentment towards my parents, for so many reasons I won't even get into, but one of them being that they never tried to better their lives or plan for ANYTHING. They are divorced, 73 and 63 and BROKE. I am the only child, so that means I am starting now to plan for their care. Problem is, I have prayed and talked to my husband about it and we have come to realize it isn't our responsibility to care for my mother fully.

As painful as that is to say, I have no choice but to allow the state to take care of her because she failed to plan for her own care and I simply cannot pay for her care with my own family to raise.

So to answer your question, yes this should have been discussed LONG before now. But, it is what it is. Now don't get me wrong, I do think able bodied children should participate in the loving care of their parents, but if I understand your post, this is not your husband's parents. I would simply do what you can, visit when you can, and stay out of the drama.

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answers from Philadelphia on

My inlaws are in denial. They know they have no money so they just keep kicking the problem down the road. FIL used to be in charge of all of the money and financial decisions and MIL pays no attention AT ALL. Like at all. She has no clue what they have, where it is, what is owed etc. None.

BIL lives with them but he is not very bright shall we say and cannot be counted on to take over the finances when FIL finally dies. In the meantime, FIL is getting more and more forgetful and irresponsible, but they refuse to step up and take over. When confronted they both say he refuses. But, when I asked him he said they needed to do it and he wanted them to but that they would not sit down with him to learn.

Dh and I have pleaded and shouted and spoke to religious leaders, paid for a financial advisor to come help them. Nothing has helped. Eventually FIL will die and MIL and BIL will probably lose the house. The one thing I have been clear about is that they are NOT living here. DH says not to borrow trouble til it comes..... And that we have done all we can. Some people simply cannot face reality until it runs them over. The rest of us just have to protect ourselves from the fallout.

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answers from Portland on

Have you tried to arrange a formal sit down together conference. In my family, it's worked to all get together to discuss options and make a decision. You could arrange for a social worker thru her doctor's office to help with this. Or call the local Council on Aging or similar organization for a referral.

Please remember, that unless your GMIL is declared incompetent you cannot make the decision for her. You can suggest and recommend. You can get really pushy but you have to also consider that doing so can result in hostility and broken relationships. I've known of the elderly who died when they were forced to go to a nursing home. They give up after experiencing the helpless feeling of being forced to move against their will.

Is it possible that the sister in charge and others have decided to let this happen hoping that eventually she will have to accept help. I suggest it's difficult to make decisions for an adult whose adamant about staying in place. Forcing her to do something may result in just as bad a consequence as letting her continue to live alone.

If that's the case, it's still helpful to arrange for some in home care. My mother and my aunt were offered help thru the hospital social worker and they accepted it. Perhaps you could call the hospital and find out who did the discharge planning and talk with them.

It's essential that you have the ability to talk with her medical caretakers, i.e the doctor, social worker so that you can help with plans. It's my guess that the sister in charge is maintaining communication with them. I suggest that you need to talk directly with her to find out her reasoning for allowing this to happen.

As long as everyone is separate you will have little luck making changes. I urge you to have a family meeting to discuss the situation so that you all have the same information and can either find a way to work together or decide to leave it as just one person's responsibility. What you describe sounds to be disjointed and disorganized.

You are two generations away from your GMIL and are not immediately responsible for her care. It's wonderful that you're providing for some of it. I hope that you're doing this out of love. It's reasonable for you to want to have some influence over her care. However, it may help to keep in mind that caring for her is the responsibility of others. You have no control if they're not doing what you think is best. It may be best, if you can't get the family together, to do what you're able and let go of the need to fix the situation.

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answers from Detroit on

Often times adult children are either in denial or just oblivious to their aging parents. Is the Aunt the power of attorney or patient advocate? If she is, than it's her job to take care of her mother. If she is failing to do so, then someone else can petition the Court and ask to be appointed grandma's guardian and/or conservator if grandma herself is incapable of deciding. Your husband is doing the right thing by talking to his father and uncle. If the problem continues, you can always contact your local adult protective services and see what they suggest.

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answers from Fargo on

My parents are in their sixties, in excellent health, and have already squared away plans for their care, in the event that they become infirm.

My parents are actually dealing with this with my elderly uncle. It's not as clear cut as having a plan. The elderly, though vulnerable, still have rights. My uncle is not making good choices for himself at all, but he does still have the right to make them. It's very hard on the family, but people are rallying around to help, much like you are doing for GMIL.

I'm sorry that it's so difficult, but I think you are doing a great job of providing support, as well as getting your mom involved in coaching your FIL through this. That's WAY more than a lot of our elderly population has. Very sad, but very true. Your GMIL is lucky to have you to be concerned for her welfare!

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answers from Chicago on

Amen to everything that Elisa S said. If your GMIL doesn't want help, she doesn't have to accept it unless someone can have her declared legally incompetent.

Did she give her children power of attorney? If not, they can't spend her money (even though it is for her care) without her permission. So they would have to use their own money to pay for her care. Are you sure finances aren't an issue for your husband's parents and their siblings? When my father was in a nursing home, it cost around $8000 per month. That was about 10 years ago. I'm sure it costs more now.

Perhaps your in-laws are being selfish and uncaring. But caring for an elderly person -- especially a combative one -- is all-consuming. It can take over your life. Even if you hire a nurse or put that person in a nursing home, you still need to be in constant contact with physician's, nurses, and social workers. And you have to make sure the bills get paid, insurance papers get filed, taxes get filed, a legal documents are correctly submitted.

That is so wonderful that you are using this to open a dialogue with your parents. You are so smart to do this, and you will all benefit tremendously when the time comes. My siblings and I were caught flat-footed when my father had a stroke onboard a cruise ship off the shores of Barcelona. He had no health directives or power of attorney. It took us more than a month to establish a legal conservatorship to use his money to pay the $60k to fly him home. He was comatose and remained in a vegetative state in a nursing home until he died a year and a half later. Cleaning out his house, selling the house and car, and selling his property overseas was a lot of work.

My husband and I hired an attorney to help us write our own health care directives, power of attorney, will, and trust paperwork. I have slept so much better every night since then, knowing that our children will be okay if anything happens to either one of us.

Good luck to you! I hope your GMIL gets the help that she needs. You are kind to look out for her welfare.

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answers from San Francisco on

Most of the relatives on my husband's side have been pretty responsible about their future care. All but two moved into some kind of retirement housing when they hit a certain age, places where assisted living would be available to them when and if they needed it. That way they still had their independence AND saved their children the burden of figuring out what to do if/when they became ill or disabled. My husband and I plan to do the same thing.
Now my mom is another story. She has no savings, no retirement and won't even discuss it because she says it's depressing. I know there will come a time when my siblings and I will be fighting over what to do (out of three sibs I am only really on speaking terms with one) and I am not looking forward to it.

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answers from Wichita Falls on

This should be one of the conversations you have with your children about the same age as you retire, long before it is necessary. In fact you should probably bring up the subject with your own parent and in-laws in the upcoming months. If they object, point out the grief that lack of planning has caused granny.

There are many ways to handle this, but first you need to sit everyone down and figure out what your options are. How much financial resources are available, if there aren't any, what assistance does she qualify for, what level of care is needed, what are granny's wishes, who is willing to do what (realistically not ideally)?

Right now, you may be able to pay a neighbor to stop by once a day and make sure she's okay and taking her meds, but you would wise to outline a plan as increased care is needed. Medicare/medicaid will cover some of the bills depending on what is needed and her financial resources, and those options need to be explored.

Lastly, some people cannot handle the aging of their parents and react with a head in the sand mentality. Resentment is not going to help, you can only focus on what is best for granny, not what everyone else should be doing. While you are at it, make sure she has a will, an advanced directive, a health care power of attorney, and a legal power of attorney, and that those named to be responsible are willing to take on the chore.

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answers from Minneapolis on

It's a difficult situation and the answers aren't always obvious. I have an almost 91-year-old grandmother living at home alone and she is VERY stubborn about that is where she wants to be. Could it be that the sister has tried, but Grandma has resisted any help or moving? We are always telling my grandma that she would be happier and less lonely at an assisted living place or somewhere like that, but she refuses to really discuss it even though at one time she said, "I won't fight you when the time comes." For now she's holding her own, but we all know she is only one fall or illness away from needing a change. I think it is pretty common to either not have "a plan" or to have the elderly person resist whatever plan might be in place. My parents made sure my grandma's finances are mostly in order, but in terms of where she is living and where she should be living she is fighting us and there isn't much we can do about it right now short of forcing her out of her home.

Anyhow, we have found the social workers to be helpful. If she was recently in rehab there should be one at the rehab facility that is a resource for you. They can also be found at hopsitals and there might be one in her county. They can offer advice, find other living arrangments and serve as an intermediary.

We have also found home care to be helpful. They qualify for that for a certain amount of time after discharge from a hospital or rehab. My grandma had a nurse coming in for awhile to check her vitals and an aid also came in once or twice a week to help her shower.

My grandma tried Meals on Wheels for awhile, but hated it. Her neigbors, my dad and my brother bring her food. She can prepare simple meals for herself. But, meal delivery is often an option if someone wants to look into that for her.

Good luck.

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answers from Oklahoma City on

When I worked in home health there were many options for person's who wanted to live at home until the end.

There are company's that you can call to find out their prices and insurance options.

I was an Advantage Aide. I did light housekeeping and ran errands for my clients. I also helped them with bathing and even helped a few with toileting.

I DID NOT do any sort of medical care, I am not a nurse nor am I any kind of nurses aide. The RN came by according to the clients needs. She might come by once per day to give the person their meds or she might just set them up in a pill box for the month. She did all blood pressures and medical procedures.

The client also had a case manager to set their services and do their billing. They were responsible for their care and what we were contracted to do while there.

I did everything from light housekeeping to sitting and watching TV while a family member caregiver got a break, respite care. I worked for one family 10 hours per week just doing respite care for the DIL so she could go take a nap and buy groceries.

This program would fit with this elderly person's choices if she has the insurance to cover the costs. There are many resources for elderly people who want to remain at home. This is the ideal choice for them, they don't fade away in some nursing home that takes every penny they have so that they have nothing left to leave to their children.

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answers from Redding on

There are so many families in this situation.

Have you checked to see if there is a Visiting Angels or Bright Star franchise near you? They are dedicated to providing care in one's home.

Call your local Senior Resource center, call the Primary Care Physician and see what you can get set up. If she is a veteran or the wife of a veteran, there may be benefits to help her. If she has long term care insurance, that's another resource.

The main thing is for her to get the help she needs and provide respite for the immediate family members who are trying to deal with everything.
I deal in this type of work, and it is possible for all to be cared for and happy.
You just have to do a little checking.

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answers from Dallas on

Yes. We have a plan. We learned a lot more than we wanted to at a much earlier age with my ex-step-father who has MS. He had an accident 2 years ago that left him blind. A blind man with MS cannot take care of himself.

My brother and I were left to figure everything out. Temporarily he moved in with me. That was very difficult. At the time my children were 6 and 13, and we didn't have an extra room. We love my ex-step-father, so we all pulled together and made it work, but it was far from easy.

Meanwhile, my brother and I quickly got power of attorneys (financial and medical), and began sorting out a huge financial mess that he had, and began looking at assisted living places. We also had to take him to numerous doctor's visits. His MS has gotten worse over the past two years as well.

Eventually we found a suitable place for him to live. It took about a year before the finances were sorted out. We still take care of him even though he's living in an assisted living home. We visit every week, taking him groceries (they feed him meals, but he likes extra snacks and drinks). We arranged counselors and therapists to help him adjust to being/living blind. We take him to all of his doctor's appointments, and we take him to our homes to visit, as well.

When he went blind, our lives changed forever, as well. It has taught our children to be more compassionate, patient, giving people.

Now my MIL is aging, and we are much more prepared. She is financially prepared, but we know where she can live if she needs to, and have talked about how to have those necessary discussions. My parents are thriving, but my dad is getting older. Both of my parents have openly talked about where they will move when the time comes, and they are financially stable and will be able to pay for any care they need. My husband and I are considering the way we financially plan for the future, too, because of what we've been through the last two years. It has certainly been a learning experience.

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answers from Philadelphia on

Your family is not the only family with no plan. As for myself, I think I will take my cousins advice and put a big DNR tattoo across my chest when I reach a certain age;) There really are no easy answers.

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answers from Los Angeles on

Most don't have a plan. How many in middle age even have life insurance? Why get it, nothing will happen to *them*. If your mom is a geriatric nurse, wouldn't she be the best person to get advice from?

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answers from Boston on

sigh....I feel your pain....It's my mom who's in denial..and finances were not great (and mine are worse)

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answers from Amarillo on

My coworker had this happen recently. She went to visit her dad and discovered that he had a cough and could not get his breath. He was admitted to the hospital and got the medications needed. While he was there he bacme combative and had to be placed in another ward for Alzheimer type patients. He kept saying he wanted to go home. Fast forward sons (2 live in town) got him home with healthcare coming around the clock to care for him. He lasted all of three weeks at home. The thing is for him he did have the money to pay for the help and he was 90. His wife died about three years ago so he may have wanted to go to join her.

But as a whole most people don't have a plan. They just "leave it" to the children to care for them.

Just make sure you and your husband have a plan so that your children are not saddled with this scenario.

the other S.

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answers from Boston on

Sorry you're going through this. My family always had plans in place, and the older generation sat down with the younger generation and spelled out what was where, what policies existed, and so on. Sounds like the 2 brothers in your family want the sister to handle everything, but she's not able to OR there's just too much to handle. In my family, we've got someone from out of state trying to rush in on the white horse to save the day, unaware or unconcerned about what's already being done, not to mention unclear on what kind of condition the older person is in.

It's so very hard to view one's parents as compromised - and often the elderly person wants to stay in their own home or just has no idea how to proceed. They often don't want to "burden" their own children and still see themselves as the caretaker rather than the person in need of care.

We've be working a lot with rehab facilities and elder care, and we've learned that the older person often cannot sense their own failings, has no idea that they don't have the balance or judgment they once had, etc.

I'd suggest that your husband contact the elder care agency in your GMIL's town or state, and find out what services are available. Often getting an objective case manager in there to assess things is a huge help. You might also start with GMIL's primary care physician to see whether there are any orders in place, such as health care proxy or even do-not-resuscitate (DNR) or do-not-intubate (DNI). Usually doctors are checking with their patients on these things. These professionals can help connect your husband or his aunt to services in the area. Your husband's father and uncle either need to drive/get on a plane and sit in the room with their sister and their mother and a professional, or they need to get the hell out of the way.

You can also find out about respite services for your husband's aunt - if she's got all the work, she's got all the stress. I'm going through that myself, and that's in a family where the older person made all the arrangements, moved into a retirement building with lots of levels of services available from assisted living to rehab/nursing home to temporary care to personal care attendants. She's fallen, had surgery, rehab, and 24 hour aides, and she's feisty and difficult, denying she needs anything. Meanwhile she leaves the stove on and does a variety of other things, saying she's not going to fall. Never mind that she's bruised and has broken bones from all the falls she's supposedly not having! And she's good and mad at the family members who are "butting in" to help. So even when plans are in place, they don't always function well.

Good luck - your husband has my sympathies!



answers from Hartford on

Most seniors do not ahve long term care insurance which is the only thing that would cover the type of care she needs. Medicare will not cover a 24/7 companion which is what she needs. I would contact her local senior center to see if they can help point your family in the right direction. They may even be able to have some one help connect them to needed resources

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