How do we take care of dad after mom's unexpected death?
February 25, 2015 7:04 AM   Subscribe

My mother died unexpectedly last week at the age of 64, more than likely of a heart attack, and the whole family has been in shock and upset. She had some serious health issues that she neglected (both to treat and to tell us about) and it basically was the end of her. One of the biggest things she did was being the primary caretaker of our dad who will be 79 next month. So now we're left with trying to figure out what to do...

The roller coaster of emotions surrounding her sudden death is very painful and I think the family is basically just trying to take it one day at a time with mixed results.

A few days after after her death we received a call from his PCP (who was also her PCP). Aside from his condolences he let us know that dad basically has dementia (not specifically know to us before), that he shouldn't be left to live alone, he needs care much like having a baby and that we should consider things like assisted living and maybe down the line a nursing home.

What?? what?!? whaaat??!?!? He had a stroke a couple of years and seemed to have suffered language and oral communication deterioration but dementia was new news to us. He's had hand tremors for years but that was not attributed to any neurological causes. His peripheral vision was affected also. He has had heart surgery in the past, was a cigarette smoker for years before that (not now) and recently with the stroke his medication list has grown.

At the risk or rambling on, please forgive me if I do, we don't know what the heck to do! Not even sure what questions to be asking or what resources to be consulting or where to even begin.

The facts are that between myself and 1 brother, our SOs who all have full-time jobs and 3 toddlers between us, our physical and mental capacities are stretched thin already. I thought I was stressed out before with 2 kids a mortgage and the horrible snowy winter this year but this takes it to a whole other level.

We live about 25-30 minutes (Winchester and Reading) away from dad (Watertown) and work about an hour's or so commute away (Needham and Worcester). So I don't that we could sustain going to see him everyday to make sure he takes his meds correctly for long term. He get confused and take his before/after breakfast meds at once. Or the other day he took the evening medication in the morning.

This is in eastern Massachusetts: Watertown is where dad lives in kind of an elderly independent living apartment complex. He has a visiting nurse come maybe once or twice a week (not sure). They had another woman coming in who was supposed to be a home aid from the same agency but my mom befriended her and I think maybe she didn't do all the things she is required to do like laundry or house cleaning etc... but she would take my mom food shopping or go for her if the weather was bad.

The visiting nurse and aid have already put in a request for more hours for my dad but we don't know if that will be sufficient. So what do we do about that? He is on Medicare and MassHealth so there is a possibility that some services will be covered but we certainly could not afford a situation like assisted living or nursing home.

We're trying to speak to his PCP to figure out what his plan of care is and what appointments he's got coming up.

We've spoken to the bank to have one of us be on the checking account to pay bills. He receives a yet unknown amount from SSI monthly. We have an appointment with SSI next month.

I don't even know what else there is to deal with, that's one thing we need help with. Another thing that we need help with is figuring out what to do long term.

Some of the ideas that are being considered are technological like a medication dispensing device that will simplify that process, I know there are some that will send out an alert if a dosage is missed etc...Another thing is maybe putting a webcam so we can keep an eye on him for whatever good that would do. There are motion sensors and things that we could install that would allow us to monitor him but I don't know how useful they are and a cursory glance at some options I've found online has shown that some of this is costly.

Non-tech things: Do we need an attorney for anything? Is it a good idea for one of us to have power of attorney? health proxy? Are there any social services we can/need to/should pursue? What else? or instead?

The life insurance policy we had for mom was practically useless when it came time to use it for the funeral expenses. Guaranteed life but only pays out the premiums +10% if you've had it under less than 3 years. So probably another thing we need to review.

These are all things that mom would have been good at figuring out :(
She would complain to us to a mild degree about dad and what she had to deal with but never led us to believe that it was this bad. And we didn't know about any serious cardiac issues until we started going through her documents and saw letters from her doc urging her to seek treatment. Had we only known. This has been my worse nightmare for a long while, to have mom go before dad, and now it's happened.

I know this is a lot to ask from strangers on the internet but...damn if this isn't anxiety/panic attack inducing stuff!
Thanks in advance for any and all contributions. I can check in and answer any questions if needed periodically.
posted by eatcake to Human Relations (20 answers total) 9 users marked this as a favorite
Did your mother die in hospital? When my uncle died in hospital, one of the first things they did when they realized he was dying and that he was the primary caregiver for his elderly and disabled commonlaw spouse was to get a social worker to help make sure that she (the spouse) would get the care she needed. If the hospital hasn't taken this initiave, you should ask about this (they may not have known your mom was a primary caregiver) or if she did not die in hospital, you should ask their family doctor to hook you up with a social worker or other community resources.

These people will have a clear lay of the land of what the options are not just generally, but in your area and for your situation. They will also know the best way for you to navigate your options, and the difference between how things work on paper and how they actually work.

Also, I'm very sorry for your loss. I know how overwhelming the pragmatic concerns about your dad must be right now, but please also be sure to take care of yourself. If you have a spouse who is maybe less emotionally overwhelmed, (or if your siblings do) it would be great if they could also meet with social workers with you because the will have a clearer head for analyzing and remembering what they tell you.
posted by If only I had a penguin... at 7:19 AM on February 25, 2015 [3 favorites]

Get in touch with the Watertown Council on Aging. They should be able to help you sort things out.

Neither you nor your brother is in any position to take your father in. Your young children take priority. Don't let anyone guilt-trip you into feeling you're not doing enough.

I sorry you've lost your mother so suddenly.
posted by mareli at 7:32 AM on February 25, 2015 [7 favorites]

I'm sorry for your loss. This has to be very hard on you and your brother. Whether your mom was trying to shield her kids from the truth of your dad's health, or she was just in deep denial, the fact is that it's making life harder for you right now.

Right now you are understandably overwhelmed. The first plan of attack should be to get in touch with a social worker at your dad's hospital or doctor's office. His PCP should be able to put you in touch with one. I recommend going to this person with a written list of items to discuss, a notebook/iPad to jot down notes, and, if possible, your spouse or another relative or close friend to serve as a second set of ears (when you're stressed and feeling rushed, it's easy to forget or misinterpret things).

You can also contact your local agency on aging or department of aging and adult services. Here is a link to the Massachusetts Office of Elder Affairs, and a link to senior agencies in Massachusetts. Contact them and find out what help you and your dad can access.

Good luck, and take care of yourself as well.
posted by Rosie M. Banks at 7:33 AM on February 25, 2015 [3 favorites]

You might try calling the Office of Elder Affairs for guidance on your options and local resources. The Council on Aging may also be helpful.

One thing to keep in mind with dementia is that it's not just about being able to manage his own health conditions, but about staying safe in the house. You may want to talk with his doctor about things like memory and concentration -- is he likely to turn on the stove and forget about it, for example? Is he likely to leave the house and then forget where he lives? I certainly don't know the situation with your father, but a lot of the push for 24-hour care for people with dementia is due to safety issues rather than just medical concerns, so that's something to take into account.
posted by jaguar at 7:35 AM on February 25, 2015 [4 favorites]

I'm sorry for your loss. This is a lot to deal with, for sure.

It sounds like your dad's doc said he can't be left alone for any amount of time, is that right? Usually, what people do when they can't afford assisted living for a loved one who needs it, is live with the person needing care. But it might be that you have some resources you don't know about; 2nd getting in touch with a social worker. Also check out
posted by cotton dress sock at 7:36 AM on February 25, 2015 [1 favorite]

I can't speak to specifics, but Medicare can cover nursing homes, once the person's own assets have been liquidated. This happened to my grandmother - she had to go into a nursing home, the cost of which ran through her savings, and after that, a combination of her social security checks and Medicare covered the cost of the nursing home. In that case, however, I believe that you would be required to sell your father's house (if he owns one) before Medicare would pick up the tab. This can be a tough pill to swallow for many, particularly if they were expecting an inheritance, but ultimately it might be the right decision for your family.
posted by Caz721 at 7:38 AM on February 25, 2015 [7 favorites]

1. You should absolutely start getting medical and durable power of attorney right now. Your dad's doctor should be able to provide a letter stating that he has dementia and should not be in control of his finances.

2. Your dad, if his dementia is as progressed as his doctor seems to think, should be moved to a place where he has attendant care. It is likely that your mom was reminding him when meals were, when to take his medications, even reminding him potentially to use the restroom. An assisted living facility has people who will do all of these things. He will go downhill very fast if he is not getting adequate nutrition and/or getting his medications on a regular basis.

3. If your dad was a vet, he may be eligible for veteran's benefits (I'd be happy to direct you further). You cannot be charged for assistance in getting these benefits.

4. As soon as possible, start looking at their finances and talk to a financial advisor. All of this needs to be accessible by you and your siblings. Your dad probably does not have any idea where their money is or how much there is or isn't.

5. Go buy the 36 Hour Day. It's a really helpful book on dealing with dementia.

I've been dealing with very, very similar issues for the last two years. I'm completely open to talking either by email or by phone. Please feel free to memail me if you'd like.
posted by Sophie1 at 7:44 AM on February 25, 2015 [17 favorites]

It looks like Springwell is the Aging Services Access Point for Watertown MA.

I'd call them first and see where they direct you. Set up an appointment with your father's physician to get more detail and think about what services he needs NOW vs. SOON. Triage the most important things.

This will take some time to figure out. If you have other friends and family in the area, think about specific ways they can help out: can they make you food, do other errands, check on your father once a week, etc.? Many folks don't mind pitching in for a limited amount of time with specific instructions. My guess is he's going to need a different situation sooner rather than later.

One step at a time: you will figure this out, in the midst of everything. Be kind to yourself, your father and your family as you wrestle with all the things at once.
posted by barnone at 7:59 AM on February 25, 2015

From's Massachusetts page on assisted living:

How to pay for assisted living in Massachusetts

Most assisted living is paid for privately by the resident and/or his or her family.

For people with very low income who qualify for Medicaid, the Group Adult Foster Care (GAFC) program pays a monthly amount to the facility for a resident's care. Most people eligible for GAFC also qualify for a special Supplemental Security Income (SSI) payment, which covers the rent portion of the facility's fees. Facilities that participate in GAFC usually limit it to a small number of their living units.

The ElderCHOICE program offers a certain number of reduced-price units in participating facilities. To qualify for an ElderCHOICE unit, a resident must have only about half the median income for that geographic area. Facilities that participate in ElderCHOICE must reserve 20 percent of their units for qualifying residents.

Not all assisted living facilities participate in either GAFC or ElderCHOICE. The limited numbers of units means there's almost always a waiting list. To learn more about these programs, see the assisted living pages of the official website of the Massachusetts Office of Elder Affairs.

Low-income veterans or surviving spouses of veterans may be eligible for Aid and Attendance or other payments from the Department of Veterans Affairs (VA), which can help pay for assisted living.

So, it doesn't sound easy, but there are solutions, as others have said. There's a waiting list - and it's probably best to get your dad on there ASAP - but if you or your sib did have to take him in, it would be a temporary situation.
posted by cotton dress sock at 8:04 AM on February 25, 2015 [2 favorites]

dad lives in kind of an elderly independent living apartment complex

Have you spoken to them? Often these sorts of places have a continuum of care as their residents need more assistance, and can offer assistance in (for example) getting in-home care or helping with transportation to day centers for adults until you can put something more permanent in place.
posted by anastasiav at 8:08 AM on February 25, 2015 [13 favorites]

If that is your dad's PCP's opinion, you really should heed it, and start moving in that direction now, before an emergency forces your hand.

One of you needs to be appointed POA asap. Do this before your father is incapable of making that appointment on his own. Things get really difficult if he is no longer competent, but has no POA appointed.

This sounds heartless and mercenary, but once you get POA, you might also need to have your dad's PCP formally declare him incompetent, especially if your dad is going to fight you on moving into a facility.

If he was a veteran of any sort, he is eligible for Aid and Attendance. This will help pay for in-home healthcare. It's a good option if he qualifies.
posted by Thorzdad at 8:17 AM on February 25, 2015 [3 favorites]

Yes! You need healthcare proxy and power of attorney! Ideally these things should be secured prior to the person in question not having capacity, but as long as he's still alive and not acutely ill it's not too late. Definitely get the ball rolling on this ASAP. This will simplify your life hugely if he were to fall ill or die suddenly like your mom did. Please talk to your dad about what he would want done medically if he were to suddenly fall ill (i.e. would he want heroic measures, would he just want comfort care). I assume since the dementia appears to be mild that he can still have this conversation. I know it is awkward and maybe painful to bring up, but there is no time like the present to do it. Tell him your mother's death has brought the issue to the forefront and you realized you need to know what he would want.

I'm sorry for your loss.
posted by treehorn+bunny at 8:28 AM on February 25, 2015 [1 favorite]

As well as a social worker, you may want to consult with an elder law attorney about various options. You probably also want to investigate Medicaid, which can cover a great deal of the cost of assisted living (or sometimes in-home care) if his assets are sufficiently miniscule.
posted by McCoy Pauley at 9:01 AM on February 25, 2015

MassHealth is Massachusetts' name for Medicaid, so the OP's father does have Medicaid. (Which I point out in case it gives other posters more ideas for available options.)
posted by jaguar at 9:14 AM on February 25, 2015 [1 favorite]

nthing that you absolutely need to get POA and health care proxy ASAP. Also nthing that the place where he lives might be able to guide you with local resources - my grandmother lived in an apartment complex like that, and they had resources and other facilities as her needs grew.
posted by bedhead at 9:22 AM on February 25, 2015

Yeah, an elder law attorney is a really good idea. They can help with MPOA/POA, guardianship if necessary, and any issues regarding nursing home qualification. The fact that he's already on MassHealth is great, as far as getting a nursing home paid for. Amateur advice can be really problematic, especially since the rules change so frequently. Also, your mother's death may complicate issues depending on how her estate is distributed. This site answers some of the relevant questions -- I don't know anything about the attorneys involved, but the Q and A is helpful.
posted by katemonster at 9:39 AM on February 25, 2015

I'm so sorry for your loss and all of this upheaval. Lots of good advice.

It sounds to me like you're trying to cobble together Assisted Living or Skilled Nursing Care out of lower levels of care. If your Dad has dementia, this won't cut it. As horrible as this all is for him, he should probably move into a facility that's appropriate for his care.

I would head down to the social security administration and talk with someone who can walk you through the ins and outs of Medicare and survivor benefits and anything else. Have another family member get with the state to see what's available there.
posted by Ruthless Bunny at 9:56 AM on February 25, 2015 [1 favorite]

This sounds heartless and mercenary, but once you get POA, you might also need to have your dad's PCP formally declare him incompetent, especially if your dad is going to fight you on moving into a facility.

This is an important point. POA only gives you the legal power to administer the person's wishes, which you can't override. And, it can be withdrawn by the person at any time (or superseded by another POA designating someone else). It only works if everyone's on the same page, unless the competency issue is addressed. (But an attorney would help you with all this.)
posted by cotton dress sock at 10:21 AM on February 25, 2015 [1 favorite]

MassHealth is a good thing. Do you know who administers it for your dad? It's probably either BMCHP, Celticare, Fallon, Network Health Plan, or Health New England, or Neighborhood Health. If you don't see any mail for any of them lying around at your dad's place, you can call MassHealth (with him there, if you don't yet have a POA) and they'll be able to tell you. The number is 1-800-841-2900.

Once you find out which plan your dad is a member of, call them. But don't just talk to member services, because they're entry level and probably don't know everything that's available to you. You want to talk to a care manager or case manager. Chances are that at 79 years old your dad has some chronic conditions - heart disease, diabetes, etc. - and your dad's MassHealth Health Plan will have a care management program that's appropriate for him. Mental health is also something the health plan will have care management programs for. The web site for whatever health plan your dad is a member of should have a phone number for care/case management, but you may have to dig around for it in the members section or contact us section.

The point of the call is not to get your dad into a care management program - though you will end up getting him into a care management program. The point is to get in touch with one of the nice, knowledgeable, bustling New England nurses who staff the MassHealth Plans' care management teams. These women (and men) know everything there is to know about services that will be available to your father and your family to help you get through this. And you're lucky, because in MA, there are a LOT of services available.

Memail me if you have other questions. I've been in your situation for years, with the complication that my dad doesn't live in MA and isn't willing to move. I also work for one of the health plans listed above, so I've got quite a lot of experience in this area. (There's a bank of bustling NE nurses in care management sitting right down the hall from me right now.)
posted by kythuen at 10:47 AM on February 25, 2015 [3 favorites]

Message boards are very helpful for you to search and sign up to ask questions and get support.

These have been the most helpful for me in dealing with my mother's dementia. You will find MANY people in exactly your circumstances.
posted by Riverine at 12:34 PM on February 25, 2015

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