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The NEVERENDING aging parents caretaking thread

Veloise

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Fasten your seatbelts. My sister the doctor and namesake niece went to visit dear ol' dad on Tuesday; he'd had a couple of falling incidents. She called me to discuss Possible Next Steps.

And on Weds morning Life Alert called to advise me that he's activated it. (This is the "fallen and I can't get up" pushbutton device.) After coming over twice late Tuesday night (he was calling 911 at that time), the cops got him taken to the ER. He's being fed and monitored and there's a movement alert on the bed.

In his absence, we are making some housekeeping and maintenance improvements to the house. Whether or not he returns to continue aging in place, the roof leaks, plumbing leaks, and broken appliances have to be fixed. As of late yesterday, the front room no longer has a large foot-catching cat-smelling throw rug and padding stuck to it.

From my two-hour distance, I get to post lost pet ads for his baby, an opportunist who likely snuck out during the commotion.


(this is not the culprit who ruined the rug)

I did not know that the small village PD has an adopt-a-senior program; they'll stop in almost daily. Also, meals on wheels is not income-based (sis believed that it was). It has not been easy to hire services, as he's dismissed everyone I've previously sent over.

As I explained to niece, this could be a short straight shot, or yet another curve in a long and winding road. And we have to laugh when we can; we ran through some abbreviations like FTD (Fixin' To Die) and MFC (Measure For Coffin).

Good thoughts appreciated. I am grateful for being the "designated daughter" during mama's cancer journey (ended '99), living in this area (visiting the D metro reinforces that), and for my current unemployment.
 

kjel

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My beloved mother was no longer able to work due to a myriad of health issues and effects of a previous traumatic work injury/slash injury when she was 59. She had already experienced a few TIAs which are often precursors to strokes and my ex and I could see that it was a struggle for her to keep working. As we were considering moving from our apartment at this time we decided to broach the subject of letting her retire and file for disability while we moved into her house and she could help with my daughter. She reluctantly agreed and we assumed full financial responsibility for everything and helped her apply for disability and get her much needed health care services and coordinate her care.

It was an interesting experience to say the very least and I felt sandwiched between taking care of her which was somewhat akin to dealing with a petulant teenager and my husband and daughter. I know that it was hard for her to give up her independence, financial and otherwise, and she was often resentful but there was simply no other option. About two years into the arrangement she decided she wanted to move out into a senior apartment complex because she was tired of living with us. We pointed out she wouldn't have the kind of space she had, it was far from the places she liked to go, and we could only visit her on weekends due to its location. She insisted so we moved her there and she was miserable there for all the aforementioned reasons and that it was full of old people. She was unwilling to move back in with us and could not afford to live anywhere else on her retirement income.

I had a good opportunity to transfer to South Carolina with my company at that time and they were offering a huge incentive with all taxes paid to do so. I figured that would at least buy a couple of years time to supplement her income enough to allow her to move back to her house which we were living in. She agreed and off to SC we went. About six month after we moved she suffered an aortic aneurysm and was rushed into surgery. I as advised she would be in the hospital for some time so to delay flying back until closer to her release date since she would require a lot of help. When I did fly back I was advised to put her in a rehab center until she healed up enough to be on her own again. I seriously considered it but she begged me not to do that to her so I took her home and cared for her myself until my leave ran out, hired a caregiver to spend part of the day with her, and arranged for the Meals on Wheels thing and a housecleaner. Her neighbors checked in on her daily. About six weeks home she passed away. Although it was extraordinarily difficult to be sandwiched between generations, put a lot of stress on my marriage, and was financially burdensome at least I am at peace knowing that she got to pass on in her own surroundings.

There's no right answer to dealing with an aging parent. Sometimes you have to make decisions that they will be angry about (I took the car keys/license away from mine) and often times it's rooted in fear and loss of independence. You have to find the best medium for you, your family, and your father when it comes to his care to make sure he is not a danger to himself and his needs are being met.

Hang in there.
 

WSU MUP Student

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I hope everything works out with your father.

On a slightly lighter note, if your dad lives in the local small village that I think he does, which is one that I run through quite a bit on my morning and evening jogs, I will definitely keep an eye out for a black and white cat running free.

Does it have a collar?
 

JNA

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I can appreciate what you are going through because in a few yrs I will sooner or later have to deal with that situation long distance with my Mom who is 79.
Thank goodness my sister lives nearby.
 

Veloise

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I hope everything works out with your father.

On a slightly lighter note, if your dad lives in the local small village that I think he does, which is one that I run through quite a bit on my morning and evening jogs, I will definitely keep an eye out for a black and white cat running free.

Does it have a collar?
Super Cat might have a flea collar. Extremely friendly, probably scared s#!tless. I will send you a link with an area and my phone no, more ID photos. Thanks!
 

wahday

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Sorry to hear about all of that Veloise! I have been down that road with my mother and both of my wife's parents (who came to Albuquerque to convalesce and eventually died here).

Now my father has Alzheimer's and we had to move him out of his wife's house and up to Seattle where he has been for 2 years. He bounced around to a couple of different facilities and is now in an Adult Family Home (or AFH since we're working with acronyms and abbreviations here). Its really a fantastic model as there are only 5 residents and a small, consistent group of caregivers. They are much better able to detect when things are wrong (infections, etc.) and treat them ASAP before they get too bad. At the last home, he went to the hospital 3 times in two months mainly because the workers did not catch the issues fast enough.

The one major piece of advice I would give is to find some kind of case worker person to help you negotiate this journey. As you and others have noted, there are a ton of services, opportunities, and other things that can really make your life and your parent's much more fulfilling. Not to mention paperwork, advanced directives, living wills, estate planning, etc. But figuring that all out on your own is very time consuming and complex. Sometimes case workers are assigned or you can hire folks outright and depending on the nature of health coverage, some or all of this may be covered (though probably not all - largely it depends on what they are assisting with - doctors visits, probably. keeping someone company and taking them on walks - probably not). Case worker-type folks not only help the families find solutions to issues, but also serve as an advocate for the patient. For my father, we hired a person to stop in to visit, take him to appointments my brother could not and, most importantly, have a running list of stuff the facility was supposed to be taking care of which they would then check and talk to the administration about if it was not being done. They also provided their own feedback on his needs, ways we may address things, etc. All decisions are ours, but they help steward the process along, offer advice based on past experience, etc. It was/is immensely helpful.

Good luck with everything. Its a hard journey and you will also have to look out for yourself. Or hire an advocate to do it. Which, now that I think about it, isn't a bad idea - my own personal case worker. Maybe someone to make me get into bed at a reasonable hour instead of staying up too late....
 

kjel

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^^ One of the best resources I tapped into for my mother was the county senior services division. They were a one stop shop for all social services that she qualified for and full of useful information.
 

Veloise

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Super Cat returned

Good news there. He will be joining the menagerie at sis-the-doc's house, where there are four laps to sit on and four critters to play or fight with.

A bit of full disclosure: in the book Annie's Ghosts, the author talked to a retired shrink who had worked at the state mental hospital where his aunt had lived. That's my dad. They've become friends, and I notified him just in case there's any more glimmer of recollection that he can extract.
 

Zoning Goddess

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My mom just passed in Oct at 93 at her retirement facility of choice. Problem is, she had planned to move to this place for years, but kept putting it off (because the kid and I were around the corner). By the time she would move, dementia had set it and she had NO qualiy of life there. Her life-long "Friends" blew her off, she couldn't go on the bus trips to shows, etc. She was miserable, alone all day, lasted less than a year in her apartment and then had to go to the nursing home.

I know they may not want to, but parents need to move early, if theyplant to relocate, and make friends/contacts/get involved. If possible. Those seem to be the people who live years longer.

This is so tough.
 

kjel

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My mom just passed in Oct at 93 at her retirement facility of choice. Problem is, she had planned to move to this place for years, but kept putting it off (because the kid and I were around the corner). By the time she would move, dementia had set it and she had NO qualiy of life there. Her life-long "Friends" blew her off, she couldn't go on the bus trips to shows, etc. She was miserable, alone all day, lasted less than a year in her apartment and then had to go to the nursing home.

I know they may not want to, but parents need to move early, if theyplant to relocate, and make friends/contacts/get involved. If possible. Those seem to be the people who live years longer.

This is so tough.
I think you are right. My grandmother lived in an apartment for seniors for as long as I could remember and she had a very active social life. We moved her into a nursing home when she was 90 after she fell and broke her hip. She healed up fine and lived til she was 92 when she went in her sleep. She was happy at the nursing home since she knew a few people there already, there was a bridge group she played with often, and she got visits from us three days per week.
 

Veloise

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As of tomorrow he'll have been in the hospital (one with fancy billboards all over metro Detroit) for a full week, and we still don't have a diagnosis. They don't perform procedures on weekends.

Sis has described some of the very non-customer-service behavior exhibited by some of the staff. (She was changing him, the orderly walked in, made a comment about how she seemed to not need help, and walked out.) Tonight she mentioned that she'd had to open the food containers, when she arrived mid-afternoon, because he couldn't do it to eat lunch. I said he'd be better off at a hotel with room service.

She said she could thaw some of the frozen meals she's made him and run them over to feed him. I said that's silly, why can't the staff be notified that they need to take the tops off the food, and you shouldn't have to drive an hour and then prepare meals at his house with broken appliances and questionable refrigeration. Then she started describing her hospital, room service menus on call, beautiful rooms. Mentioned that she doesn't know where in the medical school class the attending doc graduated. I said does it matter? Someone at your place can read a chart. She allowed as how he would get much better care at her place (they have the same distinctive last name).

And the two driving-age nieces are right there; they could bring over laptops and spend time with their remaining grandparent. I said he's not FTD and he'd survive an hour drive to the new hospital. Then he can go to rehab in that city and not return home. Many problems solved. I expect we'll move him by the end of the week.

It is really challenging to select a suitable Father's Day card for someone who will not be "having the best day ever!"
 

Gedunker

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I would always seek to know and develop a relationship with the charge nurse when a parent (or any loved one) is in hospital, whether short- or long-term. While the Doctor is running the big picture, the charge nurse is making the critical decisions. He/she will take the family's questions/concerns/comments seriously and factor them into the big picture. If you don't understand what they are talking about, make them take the time to bring it to a level you understand.

Good luck -- it's a hard place to be.
 

Veloise

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Sad news from M'skis

We are friends on Facebook. His mother has been terminally ill, and her journey ended early this morning.

He's on hiatus from Cyburbia so he won't see comments. Dunno if he set up private messages to appear in his e-mail; possibly worth a try.
 

ofos

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We are friends on Facebook. His mother has been terminally ill, and her journey ended early this morning.

He's on hiatus from Cyburbia so he won't see comments. Dunno if he set up private messages to appear in his e-mail; possibly worth a try.
Please give him our collective condolences.
 

Veloise

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Three weeks...

My brother came up from Texas. Yesterday sis-the-doc was in his room when I arrived. He looks like he's already dead, and sis says she doesn't expect him to last the weekend.

Amazing thing is: he's still lucid, verbal, user of big words (he describes where it hurts in Medicalese), and even slightly good-humored. I fire up the laptop and read him his e-mail and one came in from a distant cousin. He said he was proud of her for taking care of her sick mother for many years, and at one point strapped mom to a chair.
I said, "there's a thought."
He said, "watch it!"

Just in case any metro Detroiters hadn't noticed this: I am absolutely disgusted with the nursing staff. He pushes the call bell, nothing happens. He asks for pain meds. Nope. I walk out to the station and pleasant as can be request pain meds. Nothing. He's not eating (they still bring in trays of solid food and leave him). Tonight I fed him (FED HIM!) several teaspoons of orange Jello, and about half the cup of frozen ice cream-like Ensure.

He was supposed to have been moved to the Hospice area where he'd get full-time nursing care, but the paliative specialist says, "I have 24 hours to respond to a request." Hooo-kay.
We ordered in a private duty nurse to stay the night, and that will likely continue until we get some changes tomorrow.

Friend me on Facebook if you want. Great supportive community and I am grateful for it.
 

Bear Up North

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Back in 1988 by Dad left his home to go to the store. He returned about 30 minutes later to find my Mom on the floor, gone. During her senior years she never spent a day in the hospital or.....even worse.....a rest home/retirement community. When you "go" her way is, IMHO, the best.

Dad moved into a Lucas County senior citizens complex. His apartment had a small patio and he always had a nice little garden. He enjoyed his life, he was active, still drove junker cars :-c, still chased young women. He tended bar at a few local joints a few hours a week.....spending money, you know.

In 1998 he fell at his apartment and couldn't get up. He crawled to the phone and called me. Because I was in outlying bedroom suburb Swanton I called Toledo authorities to respond. He was in the hospital for a short time and then had to be transfered to a medium-care facility. After a short time he was moved to a long-term facility. When I visited him during his final days the light was gone from his eyes. He knew he was dying. Dad did not want to finish his life sitting in a wheelchair in a big room filled with people he didn't know. When his eyes stopped showing joy his heart soon followed. Within a few weeks of stay at that facility he was gone.

This Bear wants to remember my Dad for all the positive and great memories that he gave me. Now mixed with those fine memories is my memory of his lost eyes, staring out a streaked window.
_____

Caring for loved ones is tough.

Bear
 

Veloise

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Rather than post here regularly, here's my dad's Caring Bridge site, for those who are interested.
http://www.caringbridge.org/visit/edwardmissavagejrmd

The private duty nursing did the trick, and he bounced back from the edge. On Saturday sis-the-doc psrung him from the hospital and transported him to a nursing care facility a mile from her house (and only an hour from me).

The hospital nursing staff decided that, since we'd hired adequate help, they didn't need to provide further care. After multiple requests over 30 minutes, I finally called the hospital operator to get his bed changed. But then, when we wanted him released, it had to be Against Medical Advice (AMA) because of their bureaucracy.

Anyway, he's on about the second day of getting to sleep as much as he wants.
 

WSU MUP Student

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I haven't read the book but I know a lot of the story - and it is a very interesting one indeed. They had that author on Diane Rehm a few months ago, and while I usually find her show pretty boring, that one definitely held my attention. http://thedianerehmshow.org/shows/2009-06-09/steve-luxenberg-annies-ghosts-hyperion

I hope your father starts feeling a bit better soon Veloise.
 

ofos

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Belated condolences. I've been without my laptop since last Friday. I actually saw the pet thread first and it sounds like it was just time for both.
 

wahday

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My condolences, Veloise. Losing a parent blows, no matter how you slice it. Its nice your sister was there though. My best to you and your family!
 

Veloise

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Maybe the NEVERENDING Family Estate Sale thread?

Estate sale company has turned things around. Going by the photos, they've cleaned up, and staged a bit too.

Image 16 shows the bare concrete floor in the living room. My effort to remove the ruined carpet/padding resulted in a damaged wrist.

Image 62: we've taken to calling these the "nightmare clowns." Back when Ma was sick (late summer '99), sis-the-doc kidded her about using one of these as an urn.

Image 94: my old 2 x 2 roller skates, circa 1982.

Image 107: the electric-start snow blower that dear ol' dad couldn't figure out how to start. (Plug the cord into machine and outlet, start it. Unplug and remove the snow.) A former BF showed him how to accomplish this. "That cord doesn't work." Hah.

Image 112: The one item that I sortof wish I'd managed to find during this summer's adventures. That "State fair" pinball thing was our gaming console for many years. Hardest slot to get was the "candy apple," 300 points IIRC.

Know anyone in metro Detroit? Please feel free to spread the word. And drop by if you want to see how not to design a house without a neighborhood. I am certain that spending my teenage years there opened my eyes to urban planning.
 

Veloise

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Snow blower you say? I could use one today! :)
Pretty sure it's the same one, and that incident was in 1990 or 91. The neighbor (some 20 years younger) had a massive blower, and he's a runner. He always did the driveway and the road frontage.

The company says "enter at own risk," and that goes for buying anything as well.
 

Cardinal

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I imagine it has to be hard to watch some of those things go. I think of how a person spends a lifetime collecting things that have meaning to them, and hoping to see them go to someone else who will appreciate them in the same way. Not having any kids of my own, I often wonder what will become of my own things when I eventually pass along.
 

Mud Princess

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Wow! I like some of the glass birds, and the Danish modern credenza! As if I need anymore stuff... :r:

I imagine it has to be hard to watch some of those things go. I think of how a person spends a lifetime collecting things that have meaning to them, and hoping to see them go to someone else who will appreciate them in the same way. Not having any kids of my own, I often wonder what will become of my own things when I eventually pass along.
Me too. :( I've been attempting to de-clutter, and I often don't know what to do with items that aren't of much (if any) value to the average person. Freecyle only goes so far. There are a lot of people who would just as easily purchase something brand-new.
 

jsk1983

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Wow! I like some of the glass birds, and the Danish modern credenza! As if I need anymore stuff... :r:



Me too. :( I've been attempting to de-clutter, and I often don't know what to do with items that aren't of much (if any) value to the average person. Freecyle only goes so far. There are a lot of people who would just as easily purchase something brand-new.
My mom will donate just about anything to a local person who collects things for Nicaragua and then has them shipped down there by the truck load. They'll take just about anything.
 

Veloise

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I imagine it has to be hard to watch some of those things go. I think of how a person spends a lifetime collecting things that have meaning to them, and hoping to see them go to someone else who will appreciate them in the same way. Not having any kids of my own, I often wonder what will become of my own things when I eventually pass along.
There were several thousand pieces of art glass in July. Each of us selected favorites, in the quantity that we each wanted, without regard to original price or whether it was "our fair share" (one of dad's favorite terms). For years I've looked at various paperweights and vases, thinking I'd take them home someday. That day arrived, and I have new/old glassware in almost every room. Mine is a tiny fraction of the total, not even 50 pieces. I do have some of the original vases (bought at J.L. Hudson's downtown) and some other items that I spent long childhood hours looking at.

Seeing everything pictured by the company, it's clear that a) the folks were compulsive collectors 2) they forgot what they had at home and would readily pick up duplicates or "cousins," and iii) it's just stuff.

A longtime buddy suggested the same, and allowed as how the little toddler rocker (last photo) should be saved for a great-niece. But a lot of that stuff (notable the religious icons, the lunchboxes, and the kiddie rocker) were collected during the late 80s, right after they retired and were scraping by on four pensions. Way more time and space than common sense. But it's not my house, and it's not my stuff. I debated on Ma's fur coat, deciding that my house doesn't need another one. (Mine purr.)

Bottom line: live in housing that suits your current situation, not 3500+ s.f. and five BR if you're flying solo. Pare it down and don't put your heirs through this.

My Salvation Army buddy is ready with the truck for post-sale clean-up.

Dan, interested in your estate sale experience.
 

Veloise

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The NEVERENDING sis-the-doc needs psychiatric help thread

Oh, the irony. Passive-aggressive.

From my comfy desk and high-speed internet two hours away, I created an event page on FB, hawking the estate sale. Brother and I have shared it again and again...between us we have 800 friends. I updated the Caring Bridge site to help promote the sale to people who cared about dear ol' dad. And this morning I added a listing on the garage sales section of Craigslist.

Sent a message to the bank trustee about having real estate sell sheets available. She's a banker, not a marketer; "first we have to get past this estate sale." Not in the project management world! I created a couple of documents and sent to the local Kinko, FedEx Office, a colorful card with bullet points and photos about the house, and a distinctive "visitor sheet" where folks can list their contact info should they be interested in possibly buying the place. Paid about $5 for the printing and $9.95 to have them delivered. With ink pens.

And sis's reaction: "were you asked to do that?"

Well, no.

No one asked me to get in the car and drive to the hospital (two hours) the day he was admitted, and on Father's Day (she was in Chicago at a Jethro Tull concert). No one asked me to drive from Ann Arbor (one hour) every single freakin' day that Ma was a patient there. No one asked me to craft not one, but two well-written, loving, and complete obits pre-need.

No one asked me to donate money to his church's (no longer shabby) social hall to fix it up. No one asked me to create a scholarship for her alma mater, to be awarded to female medical students studying psychiatry.

It's hard to believe that this person was raised in the same environment.
 

wahday

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That sounds pretty crappy Veloise. I've been through all of that three times now (my mother and both of my wife's parents), with the fourth and final time probably not too far in the future. My father has Alzheimers and is pretty advanced right now. He lives in Seattle near my brother now but has a big ole storage unit of stuff in California we will have to deal with at some point. So tedious! But we were just talking about what to do regarding all the memorial stuff, unloading the storage unit items, etc. He lived and worked in PA for almost 50 years and so all of those friends and colleagues are back there, making the plan for what to do after "the event" rather complicated

I count my lucky stars every day that my brother and I are so close because it has made all of this so much easier. The financial stuff, the power of attorney issues, healthcare decisions, and on and on are things that can really tear families apart. Let alone what happens after they pass away.

Sorry you are having to go through this. I expect this is your sisters way of dealing with her grief and lingering feelings of powerlessness, but since its not contributing to the bigger picture or the cohesion of the family, it seems like its just downright annoying. And frustrating. Oy! Good luck!
 

Veloise

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Thanks wahday. A big part of it is her ongoing power struggle with the bank trustees. Every week she swings from a polite request to a dripping-with-hostility nastygram. First bank declined to work with us. Second bank, our trustee was re-assigned after two months.

Sis's current MO (she told me today) was to not do anything extra "because that's the trustee's job." So...if the sale is a flop (thanks, Michigan winter!) there's more to put into a dumpster. What's the benefit to us?

Oh, and she won't use the Salvation Army for the leftovers. "It will be handled." She won't tell me how.
 

Cardinal

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I feel so lucky to have the family I do, where everyone gets along and nobody gets into another's business. My wife's family... not so much. Her brothers are alright, but she has these two aunts that make Homer's "gruesome twosome" look appealing. There are a few others in that generation that are almost as bad. After getting off the phone one day she said something that is still quoted on our refrigerator door - "I am so glad I live in Wisconsin." (The rest of her family lives on the west coast.)
 

mendelman

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This may sound callous - but what is the price for the house? The color rendering and Bing Maps aerial indicate it is a pretty well executed Mid-Cent Mod house.

Hopefully, someone doesn't buy and tear it down for some hideous Neo-Gothic-Tudor-Colonial monstrosity.

Also, post pics of the house if you have them. I'm going to pass your estate sale link to my parents who would probably be very interested provided they're in the Flint area this weekend.
 

Veloise

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This may sound callous - but what is the price for the house? The color rendering and Bing Maps aerial indicate it is a pretty well executed Mid-Cent Mod house.

Hopefully, someone doesn't buy and tear it down for some hideous Neo-Gothic-Tudor-Colonial monstrosity.

Also, post pics of the house if you have them. I'm going to pass your estate sale link to my parents who would probably be very interested provided they're in the Flint area this weekend.
Aren't you a friend on FB? I have a house page set up there, with better pics. No price set; needs some repairs. A local friend went to the sale, and she got back to me about "the condition of the house."

Here's what the book author wrote. He was very kind.



Here's one showing the back of it.

 

Otis

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Put my 87 year old father in a nursing home on Tuesday. My 86 year old mother can't take care of him any more. They live in Virginia Beach, I live in Oregon. My sister died four years ago, and her daughter lives in Baltimore. Her attitude is "Getting old sucks." They had in-home help for over a year, but it still was too stressful for my mother. He has dementia that waxes and wanes, is incontinent, is deaf, and can't walk. Yesterday in one of his clearer moments he looked me in the eye and said, "Why am I here? Why can't I go home?" This is killing me. I want to try to figure out if there is some alternative. My mother can't afford 24-hour in-home care for him, and to be honest doesn't want someone in her home due to her own issues. There seems to be no right answer: no matter what, someone is going to get screwed. I'm just beside myself.
 

kms

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I can understand your feelings, Otis. Can your parents move to a place together, a place equipped to care for your father and be comfortable for your mother?
 

Veloise

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Ideas...

Assisted living places: a nice ranch unit for your mother and drop-in care for dad. My community bands play at such places, and they offer a continuum of options for everyone from the "active senior" to the ones for whom Dr Jack would sign up.

It's a lot easier to hire someone than draft a relative. Health aides will cheerfully do just about anything, while the sibs - nieces - grands - cousins will develop their own issues.

Lots of social service agencies are available to help. Let your fingers do the walking. (My father didn't have to die of self-induced malnutrition. Seniors are eligible for meals on wheels, and it's not income-based despite what my sister thinks.)

Feeling your pain. HTH
 

JNA

Cyburbian Plus
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This has been semi instructional in that I will be dealing with long distant parental care / property issues my self.
Sister & Brother - just 1+ hr away
Brother in CA
Me in IN
 

wahday

Cyburbian
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Put my 87 year old father in a nursing home on Tuesday. My 86 year old mother can't take care of him any more. They live in Virginia Beach, I live in Oregon. My sister died four years ago, and her daughter lives in Baltimore. Her attitude is "Getting old sucks." They had in-home help for over a year, but it still was too stressful for my mother. He has dementia that waxes and wanes, is incontinent, is deaf, and can't walk. Yesterday in one of his clearer moments he looked me in the eye and said, "Why am I here? Why can't I go home?" This is killing me. I want to try to figure out if there is some alternative. My mother can't afford 24-hour in-home care for him, and to be honest doesn't want someone in her home due to her own issues. There seems to be no right answer: no matter what, someone is going to get screwed. I'm just beside myself.
So sorry to hear about this. I am in this boat for the third and final time as far as parents are concerned (combing both my parents and my wife's). My father also has dementia (Alzheimer's) so I am also aware of the particular problems that creates.

Veloise is right about the assisted living situations. To be more detailed, there are places that provide the full range of care, depending on developing needs, that may range from totally independent living, to assited living, to nursing care, to hospice. It is very common for couples to move together when one is still independent but the other is requiring care beyond what they can provide. One reason this can be attractive is that at some point the other spouse will need care and then they are already at a place that can provide it. It also gives them some time to develop relationships rather than being ushered into such a place at a crisis time. And knowing that they can be there until the end is helpful.

Expense can be a big factor, depending on existing coverage, but if they are both leaving their home, that can help. Proceeds from the home sale can go toward the care if they owned, or if they rented, that rent can be applied to the new living situation. Don't rule it out without looking into the costs.

My father, who does not have a spouse caring for him, lives in an Adult Family Home (AFH) which has been really great. Its like a regular home in a regular neighborhood that serves a small group of 5 people, all suffering from dementia (you can imagine what THAT dinner table conversation is like...). The staff is 2 people FT during the day and then 1 at night unless there is an emergency. There is lots of consistency in care, lots of personal attention (which is so important for dementia patients) and the caregivers know the patients much better, thus reducing indicences of medical complications. They can read the signs of an emerging infection or change in behavior and catch them earlier. Its a huge improvement over the large nursing home type facility he was living in. Also, he can be there until the end.

The moments of terrified clarity you mentioned have been the hardest for me to deal with, but its important to remember that with dementia, they really do forget about their anxiety after you leave. Its the family members that hold onto those feelings and are haunted by that desperate pleading face. Believe me, I know. This may sound crass or insensitive, but I think about my father's state (which is actually much further along now - he can't really speak nor get around or eat by himself) as being much like a dog's state of consciousness. He is very much living in the moment and not capable of reflecting on a lot if it isn't actually happening right then. And I don't think he thinks much about me when I am not there. But when I arrive, he sees me and remembers me and used to plead with me to take him with me, etc. So terrible. But, out of sight out of mind. Plus, any explaining I used to do about whay I couldn't care for him in my home is forgotten within the hour anyway. My dog also probably doesn't do a lot of thinking about me in my absence, but when he ses, me, he thinks "oh, there you are!" It feels very muchy like that.

Another advantage of the high level of personal care at the AFH setting is that the staff is there to help you out. They usually help provide a distraction when its time to leave, easing my father's anxiety and mine. They know how to handle the situations well...

Good luck with everything. Its really a totally crappy situation no matter how you slice it. We just stumble through the best we can.
 

Veloise

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Caregiver issues

Drafting a family member means no time off, 24/7/365 caregiving, and often a changed living situation anyway.

Some years back my father's favorite kid mentioned that her house, with a separate guest room and attached bath, would be ideal for taking care of an old man. (She overlooked the steps, but then again so did dear ol' dad when he offered to host his aging aunt.)

During my exploration into services (wow, it's been a year since he landed in the hospital for the last tidal wave), it was amazing to find how helpful the social services world could be. Police said they have a route of solo seniors who they check, and they referred me to another agency with home care. Those folks suggested another place. They all work together and support each other.
 

Veloise

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Bumping so a new seeker can find it

IP, perhaps this will help a bit.

And for everyone who doesn't live near an aging parent, here's a link to what appears to be a nationwide service that provides help with "aging in place."

The term home care describes two very different types of care:

Home health care provided by licensed medical professionals, for which you need a prescription.
Non-medical home care, such as personal care, homemaker or companionship services provided by professional caregivers.​
 

wahday

Cyburbian
Messages
3,960
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22
Sitting vigil with my father in Seattle. He's been living with Alzheimer's for years and we are at the end. He was admitted to the hospital over the weekend and as per his medical directives (since he could not swallow on his own) he has been without fluids or food for a few days. The end is nigh.

The bummer (or, more of a bummer) is that my brother, who lives in Seattle, is out of town with his family - at the bottom of the Grand Canyon. Literally unreachable. The group he is with has a satellite phone but as fate would have it, the number he left is missing a digit and despite many hours tracking down customer service and support, it turns out there is no directory for these phones, so its impossible to find the correct number. I even called the Park Service who said they would try to get a message to him, but the section he is in is inaccessible so it will have to wait. He isn't slated to get off the river until June 10 when all of this will be done. He missed our mother's passing, too, so I feel bad for him. Though he has been living here with him and caring for him more than I.

So, doing this one solo (got a kid still in school this week so mom is with him and the daughter back in NM). Pretty heavy, but I am glad to be here to send him off. This will be my 4th death. It ain't fun, but it is part of life. Still, its not exactly experience I would put on my resume.

In brighter news, my son is receiving an award for academic excellence tomorrow at a school-wide ceremony. I'm so proud of my little over-achieving 6th grader! Just like his grandfather. He would be proud...
 

Whose Yur Planner

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Sitting vigil with my father in Seattle. He's been living with Alzheimer's for years and we are at the end. He was admitted to the hospital over the weekend and as per his medical directives (since he could not swallow on his own) he has been without fluids or food for a few days. The end is nigh.

The bummer (or, more of a bummer) is that my brother, who lives in Seattle, is out of town with his family - at the bottom of the Grand Canyon. Literally unreachable. The group he is with has a satellite phone but as fate would have it, the number he left is missing a digit and despite many hours tracking down customer service and support, it turns out there is no directory for these phones, so its impossible to find the correct number. I even called the Park Service who said they would try to get a message to him, but the section he is in is inaccessible so it will have to wait. He isn't slated to get off the river until June 10 when all of this will be done. He missed our mother's passing, too, so I feel bad for him. Though he has been living here with him and caring for him more than I.

So, doing this one solo (got a kid still in school this week so mom is with him and the daughter back in NM). Pretty heavy, but I am glad to be here to send him off. This will be my 4th death. It ain't fun, but it is part of life. Still, its not exactly experience I would put on my resume.

In brighter news, my son is receiving an award for academic excellence tomorrow at a school-wide ceremony. I'm so proud of my little over-achieving 6th grader! Just like his grandfather. He would be proud...
Hang in there-prayers are with you and for an easy passage
 
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