Jump to content

Managing an aging parent's health from 1,000 miles away...


Recommended Posts

Some unsolicited input here from someone who has been lucky enough to know Tom's dad, albeit briefly. (Patrick gets it right: "A creative force, and pretty darn robust.") 

--Did he perhaps have a long-term care insurance policy? (Through a union, or another source?) That can be an enormous help. 

--You will need to let him live in that house absolutely as long as possible and maybe then some. Of all the people I've known in life, I can't think of ANYBODY more rooted in the place where they live. If at all possible, simplify to where he can live on the ground floor all day and night, without climbing stairs. And look into hiring a home health aide, an insured one from a reputable company. Maybe just a few hours a day. Long-term care insurance would help with this. 

--I'm sorry to hear all of it, for you and your dad. I'm glad you've got good info and some social services support from the hospital; the hospital social services staff will know how to extend this support further into the community. 

--Follow your conscience. It's doing a hell of a good job.

--Do not be afraid to invoke FMLA with your employer. 

 

Link to comment
Share on other sites

  • Replies 100
  • Created
  • Last Reply

Top Posters In This Topic

When my mother wasn't well, and living 350 miles away I got a LOT of information and help from the Family Caregiver Alliance. I'm not sure if they operate outside of CA, but there's a lot of good info on their website as well as references in other organizations around the country. Worth looking into.

Family Caregiver Alliance

Link to comment
Share on other sites

This is one of those few times when it is not advantageous to be posting under your real name as I am going through something very similar with my mother right now. I will say this - it is very very hard to get a parent to voluntarily leave their house. It seems to take a catastrophic event for them to "see the light" and realize that they can't do it alone any more. I wish you luck. It's tough.

Link to comment
Share on other sites

Thanks again, everyone.  My employer will be incredibly supportive, and they were doing FMLA before it was ever mandated.  I'm planning to spend the better part of next week with my Dad, trying to get as much figured out near-term, as I can.  Probably the first of several trips in the near future.

We think our very first priority is getting him a medical aleart system that he can wear on his wrist (or around his neck), with fall-detection cabability.  Something he can push a button, and get help with.  And even if he can't push a button, if he falls, an alert is generated, so he can get help fast.

Second but almost equal priority may be getting him a wheelchair he can use at home, so he isn't on his feet nearly as much, so if he has one of these episodes, he isn't walking around nearly as much.

Of course there's half a dozen other things we've got to figure out in short order after that.  At the moment, I'm trying to get his primary care doctor to call me, so I can strategize with him.  They won't get the records/results from his hospital stay until tomorrow or Wenesday, but I need to get that channel of communication going.  I've left messages this morning with his office, and am waiting to hear back.

Link to comment
Share on other sites

I can't stress enough the importance of looking into whatever government resources are available in the area, state/county/city. Don't assume that all such assistance is means-tested. Assume nothing until you know from direct contact. There may be resources you have at your disposal that you can use. In my experience, you have to find it out yourself, they don't really "advertise" (and the "medical establishment" might want the business themselves). Every state is different, but you'll want to at least inquire.

Also - if your dad has any religious affiliation, check out what services are available from there. It might not be much, but anything you can get that he can use, hey.

As if you don't have enough to do...:)

Link to comment
Share on other sites

31 minutes ago, JSngry said:

I can't stress enough the importance of looking into whatever government resources are available in the area, state/county/city. Don't assume that all such assistance is means-tested.

I think my dad *would* easily qualify for assistance if the means-testing is based on his annual income.  He has some investments, but more than anything, he's as frugal as anyone on the planet, practically -- and he barely touches the principle on his investments, and relies a great deal on Masonic community he's involved in (for some of his meals, and such).  To be honest, he gets more food from left-overs from the Masonic events that he EVER asks for.  There's always food left-over, and whenever he orders anything "to go" - they just always give him 3x as much as he ordered (even though he's never asked for that).

Likewise, I think might qualify if his means-testing was based on liquid assets too --  he's certainly not rich (by any measure, whatsoever) -- just frugal as all getout.

We've been researching on-line all weekend, and have some leads -- but to say it's arduous doesn't even scrape the surface.

No religious affiliation any long -- he used to be a LONG time member of the United Church of Christ, but the particular congregation he was involved in folded (everyone got old), and he never got involved with any others.  He is still a pretty religious man, and DEEPLY devoted to the Masons.  There USED to be a couple Masonic retirement homes that he and my Mom had planned to going to "some day" (20+ years ago they looked in them) -- but all of those with 250-300 miles have all gone belly up 10+ years ago.  I may search farther and wider to see if I can find any that are still in business, but the two in downstate Illinois are no longer in existence.

My wife's grandmother was in a Mosaic-related home 10 years ago (up in the Minneapolis area), so perhaps we could find something out here on the east coast.  But we haven't yet looked into that.  Plus, I really don't want to pull him away from everyone he knows (and everyone who knows him), around the area he lives now.  I suspect he could still go places, and I think there's plenty of guys (Masons, and some other non-Masonic friends), who would take him places -- since he would probably be fine in a wheelchair.

Link to comment
Share on other sites

I can only speak for Ohio, but they had elderly service options that included basic needs like house-cleaning, nothing intense, but enough to keep the dishes from piling up and drawing rats, stuff like that. He might not need that now, but...always "easier" to know what your options are before you need them, as best you can.

Perhaps Missouri is not as aged/ill as Ohio...I sure hope not. But most every state is getting older and sicker, so...

 

Link to comment
Share on other sites

One other thing I forgot. You may encounter someone who says they can help your dad get a veterans "aid and attendance" pension from the federal government. Don't fall for it. It's usually a gateway to a scam. 

I mention it because five different parties have tried to snag my parents on this one in the last four years. As recently as last week. 

https://www.consumer.ftc.gov/blog/2015/11/veterans-dont-let-scammers-bilk-your-benefits

 

Link to comment
Share on other sites

Every day I alternate between 1) being absolutely terrified of dealing with the enormity and complexity of all this -- even just struggling to hook myself into finding and talking to the right people.

...and 2) finally getting somewhere on something related to all this, and suddenly feeling like: well, that's one less thing that I'm 100% in the dark about.

 

We had another big scare last night (long story), but it turned out to probably just be that my dad was super-tired, and really out of it (he answered the phone, but all he would say (mumble) was "hello" every once in a while, for almost 7-minutes straight (I looked at the time on my phone).  I had to call the police to have them check on him and make sure he wasn't having a stroke, or delirious for some other reason.  I'm going to have to look into getting him some new landline phones while I'm home next week (jeez, where the fuck can you buy simple, bare-bones landline phones anymore? - guess I'll find out).

But then I finally got his home visiting-nurse care people on the phone today, and just had a wonderful 45 minute conversation, and now I'm 10x better in the loop about their stuff (and his physical and occupational therapy).  Turns out they did have all my contact information since they first saw him at his home on Monday.  But he's been well enough every time they've seen him (no specific new health events/issues) that they normally don't call relatives, unless there's a specific need to (or specific new information) -- or unless the patient (my Dad) asks them to call me.  And because he's also been communicative and "very high-functioning cognitive" all of the 3 times they've seen him... they said they didn't have any reason to call me.

Meanwhile, for 3 days, I kept waiting for them to call me -- since I had NO idea who they were, or even what the name of their agency/organization was (or any contact info for them), and all my Dad knew was that it was on some piece of paper around his house somewhere (with all the papers they sent him home with from the hospital).  Luckily I called this morning when his home nurse happened to be there, and I had him hand the phone to her.

 

As I said, a complete roller coaster between abject terror in trying to deal with the totality of something like this, when I don't even have any contact info for almost any of the professionals involved.  But when that barrier (and lack of communication) finally drops, I am suddenly finding super helpful and really incredibly kind people (who clearly found their calling in life).

I'm sure I'll know more, and feel a little less chaotic about everything when I'm actually there with him early next week (I fly out Wednesday first thing).  I'll be there a whole week, almost -- from March 27 thru April 2.

 

Incredibly grateful for the warm, kind, and gentle medical professionals I've been talking to on the phone (finally) this morning.  But I'm still more than a little terrified of dealing with the enormity of all this.  And it's NOT that I'm worried about making bad decisions, or "doing the wrong thing" -- it's just navigating everything, when I don't have any earthly idea about any of this, except purely in the abstract.

But some progress, finally.

Edited by Rooster_Ties
Link to comment
Share on other sites

15 hours ago, Spontooneous said:

 (jeez, where the fuck can you buy simple, bare-bones landline phones anymore? - guess I'll find out).

Buy 12 at the thrift store and you might be able to piece together 3 that work.

Actually, I'm about to order a couple cordless landline phones off Amazon, with 2 separate base stations, and one of them has a much better answering machine than my dad currently has (and that'll play back messages at half-speed, if he wants).  Fairly big buttons, and reasonably simple -- not 2 dozen features he doesn't need -- and fairly simply answering machine interface.

That should solve a bunch of issues with his phones -- and also let him keep the phone with him at the dining room table, or in a room where the phone isn't super close -- so he *doesn't* feel like he has to RUN to get the phone (in another room).

He's also going to have a panic button (probably a small unit he can wear on his wrist), for more true emergencies.  It's a 60-day trial (his insurance will pay for the first 60 days), and we may get a better "help I've fallen" button after the first 60 days, one with automatic fall-detection.  So that's all completely separate from the cordless phones (meaning the cordless phone isn't intended to be his emergency life-line, necessarily).

Edit: Just joined Amazon Prime (finally), and I'm looking at a bunch of different cordless phones now (with a built-in answering machine), that have free one-day delivery.  Seem to be lots of good options.

Edited by Rooster_Ties
Link to comment
Share on other sites

4 minutes ago, Kevin Bresnahan said:

If he's anything like my mother, he won't press the button. My mother fell out of bed and broke her upper leg - luckily not her hip. Instead of pressing the button, she dragged her bleeding body back up onto her bed and stretched over to the phone to call her sister to come bring her to the hospital. She didn't want to pay for an ambulance. That's my mom.

I think my dad will actually use, if he needs it.  We don't have it installed quite yet (within the next week, I think). but I think some of them have a microphone integrated into the button device, so it's possible my dad can speak to someone on the other end of the line about his situation, and how serious it is.  I understand there is no "per use" fee for pushing the button, and in fact they want the person to test it at least weekly.  This is so the user (the elderly person) gets used to how easy and commonplace it is to use, so they don't have any stigma about using it (and to reinforce to them that it doesn't cost anything to at least push the button, so someone can help assess your situation.

Link to comment
Share on other sites

A word about the multiple headset w/base landlines. We have those ourselves and love them, but you want to make sure that a system is in place to always have one headset at the base. Portability is wonderful, but if you forget where you left the damn thing...They have finder functions, but if a person is a little confused or whatnot, that could get dicey.

Link to comment
Share on other sites

1 hour ago, JSngry said:

A word about the multiple headset w/base landlines. We have those ourselves and love them, but you want to make sure that a system is in place to always have one headset at the base. Portability is wonderful, but if you forget where you left the damn thing...They have finder functions, but if a person is a little confused or whatnot, that could get dicey.

Yes. My elderly parents often misplace a handset. Also try and find one that it is easy to replace in the base unit. This sounds obvious but some can be replaced in the holster without cutting the line which can leave the line engaged.

When it cones to learning to use the new phone it would be good if someone's there to talk through or show your father how to use it. I underestimated how long it took my folks to feel comfortable with a new unfamiliar phone when they had had one they were used to for a long time ( even the different, ironically improved, sound quality threw them both for a while). I found it invaluable to have a copy of the phone manual to hand too.

 

Link to comment
Share on other sites

I had similar issue with parental units misplacing cordless phones. It got so bad that when we moved them into a care facility, I purchased a corded phone with big buttons. Parked it next to her chair in the living room area of her apartment and it worked well. She has since moved to a different (service) level and the phone jack is inconveniently located in the bedroom, so I am reevaluating cordless possibilities. One friend suggested just buying one that comes w several handsets and deploy them if/when they go missing.

Link to comment
Share on other sites

Anything would be better than my Dad's old, kludgy landline phones that are mostly 25-40 years old (every one of them).

And his answering machine ain't so hot either.  I don't think he ever figured out how to playback messages, and they seemingly auto-delete(?) after he plays them the first time.  No idea where the manual got to (the machine is a 20 year old ancient digital machine -- just barely better than the old tape-based(!) machine he had before, for 10 years before that).  But like everything else in my dad's house:  if it still works (even if just barely), why replace it?

He had an old electric kitchen stove that literally dated back to the 1920's -- which finally bit the bullet back in the 1970's -- and he was LITERALLY complaining about not being able to get parts to fix it as little as 4-5 years ago (because 10 years ago he gave it to my cousin as an antique, simply for 'display' purposes -- and before he gave it to her, he went around town to every single place he could find in the entire yellow-pages that (supposedly) fixed old stoves, trying to find someone who could get whatever replacement part it needed -- because DAMN IT, it's a perfectly good stove and would still work good as new, if only part XYZ could be replaced.  Again, this is a stove dating back to the 1920's.

ANYWAY, all in all, he'll be OK with the new cordless phones, and the new (integrated) answering machine -- and I really should have made him upgrade all that 10 years ago.

Link to comment
Share on other sites

I'm on a plane in a couple hours, for a full week with my Dad in St. LouIs.

All this with him came up a few days before my 50th birthday (which was last Monday). And I have to say that I suddenly feel dramatically older than I have my entire life.

Like my Dad's situation aged me 10 or 20 years overnight.

Not trying to state that in a "woe is me" sort of way. But god damn, if I don't suddenly feel old right now, like 50 smacked me up the head with a crowbar.

I am not ready to deal with this, but I'll be 'back home' in 6 short hours. I know we'll figure it all out, one way or another.

Up in my head I "know" that, but I sure don't "feel" it, or anything even remotely like it, deep inside.

 

 

Link to comment
Share on other sites

Life doesn't necessarily prepare you for these things is what I found. I found it physically and emotionally a real challenge and recognise the 'feeling older' sensation both in terms of physically but also in taking on a new sense of responsibility that arises from being this age with parents of their age. One thing to remember is do look out for yourself as well as for your Dad. Here's hoping your visit goes well, resolves some of the practical issues and allows you and your Dad some time together that's not about phones, care packages and such stuff.

Link to comment
Share on other sites

Mostly going ok-ish here with my Dad (I've been here in St. Louis with him since Wed) -- all things considered I guess.

Long story, short (best as I can): we're going to get my Dad out of his house and into a retirement center (not quite "assisted care"). A place with his own appartnent, with onsite dinning 3 meals a day, just down the hall from his own space.

One possibility is the place my dad's mother went when she was in her late 90's (she was born in 1897, and lived to be 100!). That may not be the exact same place he moves into, but something quite like it probably. Added bonus though is that's where he took his own mother 24 years ago, and it was a good, family-owned place. It's a small facility, just two small wings, maybe 40-50 units total? - not sure how big the place is exactly. We have a more formal visit scheduled on Monday.

Earliest we think we can move him in there might be June or July. He's pretty on-board with the whole thing. He's pretty frustrated that he feels fine, and is very moble, but twice now he's just crumbled into a heep.

We've got a walker for him, and a compact wheelchair that will actually maneuver ok through the corners in his house. He can walk around fine, but is a risk for falling, so that transition into the mobility aids is not going to be easy, BUT he is trying.

I'm holding up pretty well, but 2-3 times I've had something happen that -- I don't know what -- and I've just lost it (or damn close). Once was walking out of the retirement place my grandmother was in 24 years ago (which I ducked into quickly, alone, while I was out without my dad). And most of that was relief that the place was still there (they aren't on-line), and seemed to still be a very good and down-to-earth place. The day manager I talked to for 10-12 minutes informally was super nice and genuine, and I got a really good vibe from her. She said she'd worked there almost 20 years, iirc, and seemed good.

And then I totally lost it recounting my impressions of the place on the phone with my wife, about 15 minutes later -- just her and me, my dad was back home still.

And then I decided to give my dad a hug this afternoon. He's not very affectionate, and I usually only give him a hug literally just as I'm about to leave when I've been visiting him.

But still I'm here until Tue, and I just decided to give him a big hug an hour ago. And I simply said he meant a lot to me. I kept it all down, but I totally lost it inside.

I had dreams again last night, like I've had a several times over the last 4-5 years, of this house my Dad grew up in being "dismantled" room, by room. Holes in walls, walls knocked down, entire rooms being taken out with cranes, and occasionally a wrecking ball being taken to the whole house, despite it being such a great house, in good shape, with lots of character, and early 20th century style.

I can believe how hard this all is. Not 24/7, but every day something causes me to let my emotional guard down, and I'm either a puddle, or at least one on the inside for a minute or two.

I'm ok, but this is really hard.

 

Edited by Rooster_Ties
Link to comment
Share on other sites

Hey, if he's onboard with moving out, count your blessings.

And yes, it's hard. A connection to every moment of your life is being dissolved, in slow, if at times seemingly violent, motion. That's your dream. Accept it as the subconscious meditation that it is and let it do what it do. It's about as honest as honest can be,

There will be moments of overwhelming emotion, sometimes the result of a slow-build, and sometimes totally out of nowhere. Allow them to fully cycle, they are yours.

He's your dad, and he is going to die, probably sooner than later. And it's no longer hypothetical, shit is real now, and is going to only get real-er.

It's a heavy thing, but just let it be that. As difficult as it is and is going to be, trying to avoid/deflect it will only diminish your humanity. When it all resolves itself, you will be glad to come out the other side of it enriched rather than diminished.

Good luck, god bless, and feel free to contact me offline if/when.

Link to comment
Share on other sites

This slow-roll of my Dad's last 5-10 years he has left on this earth is nothing like when my mom passed 16 years ago. She passed suddenly, without warning, an aneurism.

This is all so different, because I'm really seeing the aging of one of my parents for the very first time. And the enormity of it all isn't a one time event, but rather something to manage over several upcoming years now. And the weight of all the associated logistics.

I really did not anticipate how this would affect me. And I should say for the record that I'm 100% certain a good chunk of the people on this very board have experienced FAR more difficult challenges than what I'm going through with my Dad now. I hope I'm not coming off with a "woe is me" attitude in all this.

Compared to many, I know I've had a comparatively easier life, been dealt a much easier hand of cards, etc. I don't want to come off as not being mindful of that.

None of what I'm experiencing now is anything like a "gut punch", but I am suprised it feels like that some of the time, when all these emotions I can't even quite identify come bubbling up.

Link to comment
Share on other sites

Forgot to say thank you, Jim, for your kind support.

And I wanted to put it out there that 1) I don't want (and never have wanted) ANYTHING to do with owning my Dad's house. And I don't love it (though I'm certainly fond of some aspects of it / good memories / etc..). You couldn't pay me to inherit this house. If my dad died tomorrow, the executor of his will sells the house, and that's been the plan for 15+ years (so I don't have to deal with it). It's loaded with 90 year old knob-and-tube wiring, and hasn't had any updates since the 1960's. I wouldn't touch owning this house with a 10-foot pole.

...and 2) I'm convinced that my 4-5 years of dreams about my Dad's house being dismantled, or sometimes grotesquely and crudely modified (think more like the sarcophagus over what's left of Chernobyl) -- ALL THAT seems clearly to be a metaphor about my dad aging and his health issues. I'm sure I could literally correlate specific increased concern about my Dad over the last 4-5 years, with my crazy dreams about this house and its demise.

The mind is indeed an amazing thing.

Edited by Rooster_Ties
Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

  • Recently Browsing   0 members

    • No registered users viewing this page.

×
×
  • Create New...