As sunset years approach

[Figment]

I need some help.
My parents are aging beyond their years and the time has come for the children to start acting as parents. A number of changes are looming on the near horizon, and my brother and I are unsure of how to have the necessary conversations.
I'd appreciate any comments from those who've been down this road already, either as the child or the parent.

Brief breakdown:
He's 62, she's 60.
His back problems have him on enough narcotics to bring down a rhino. He's capable of clear rational thought until about 10:30 am.
Her multiple sclerosis has reared its head, affecting her mobility and her cognitive abilities. She's capable of clear rational thought from 9:30 to 2:00 most days.

It's clear that neither is capable of providing sufficient care for the other. They need some sort of assisted living arrangement. How do we do that when they're 61 and the median entry-age at such facilities is 79?

How do we tell her that she shouldn't be driving a car anymore?
How do we tell him that (after his third pill of the day) he shouldn't be driving a car or operating a ten ton boat at 25 knots?
How do we tell her that she's lost grasp of the difference between $1,000 and $100,000 and shouldn't handle "real money" anymore?
How do we tell a lifetime workaholic that he needs to find hobbies that are less labor-intensive?

We're grasping at straws.

[Another One]

Okay, first of all, do they have health care powers of attorney and living wills on file with their doctors? If not, that should be done right away. (I can get you a link to a standard form used in Wisconsin, if you need it.) Tell them its a simple precaution in case of the unexpected, which is true. But get that done immediately, while they are still arguably legally competent.

Second, talk to their doctors. (You may need written permission from Mom and Dad before the doctor can talk to you.) But get the doctor involved, since they have dealt with similar situations regularlly and can give you a more complete evaluation of your folks' condition. He or she may refer you to a social worker, who will have even more experience and suggestions for how to deal with this situation. They can also help you tap into local resources and support groups.

Third, plan on taking care of yourself! This is an exhausting, stressful, mind-numbing situation. Don't let it negatively affect your other relationships more than it absolutely has to. Involve your sibs, if any, and make plans for how you will jointly care for your parents into the future.

This situation could last a long time. Try to keep positive and take one day at a time.

Good Luck! I'll be sending postive thoughts your way.

Jami

[Dale R. Hamilton]

Fig: Good advice from Jami- thats the very first thing to do- and then safeguard the money, so that their access to it is somewhat monitored. Next, living arrangement. Assume they have their own house. I'd go for a live-in person. Making a small salary plus room and board. They would cook. clean, and look after the old folks- with maybe you/siblings providing them relief. Obviously its critical to choose the right person- and of course, valuables in the house would be safeguarded. When the right time comes, you will find that Hospice is invaluable.

Tough deal my friend. And they are so young- damn, I'm older. Life is not fair.

[Alan D. Hyde]

See another physician for a second opinion.

Their current physician may be doing all that's possible.

On the other hand, sometimes a change or reduction in medication can do wonders. And one physician may see or know or try something that another doesn't or hasn't or won't...

Alan

[ 10-07-2005, 04:09 PM: Message edited by: Alan D. Hyde ]

[Donn]

My parents moved into a stepped assisted-living facility in their mid-60's, almost 20 years ago. It's a fantastic place that allows them to live together, alone, but provides every level of care needed.

There are lots of assisted-living alternatives out there, and they don't all require you to be ancient.

[Bob Cleek]

I've been there... it is difficult. Your parents aren't that old. It may be a long haul. All that has been said before is very sage advice. I would only add that you need to become and remain very "present" for them. You can't do it from a distance. It takes dropping by several times a week, at least, by someone in the family. Home care is good, but expensive, and people often resent having someone in their home. The most important thing, I suppose, is to try to remain sensitive to THEIR reality. They've spent their lives together through thick and thin. They may need a little help, or a lot, but don't rob them of their independence and self esteem. Be supportive and helpful until it hurts... and then some. I found it helpful to remind myself occasionally, "She changed my diapers... it's only fair I return the favor!"

[George Roberts]

In the cases I know about:

In house nursing care for 1 person is $30k/month plus medication.

Nursing homes are all of the adults' assets less the house at $6k/month and then medicare kicks in.

Before my mother-in-law went to a nursing home, I said I would stay at her house until she died. The offer was turned down. I sense some regret on her part with that decision.

[Figment]

The live-in person we already have, sort of. My sister is a nurse's aide, and she lives with them. It's taking a terrible toll on her, though. She only sees them when they're at their absolute worst, and she basically has no life. Getting her out of that situation is part of the impetus.

How did you all approach the conversations on these topics? Or are the conversations the easy part compared to the execution?

Thanks guys.

[Another One]

It's too big a job for any one person, and its worse when it's family. Mom and Dad may see your sister as just "helping out," or worse "interfering." A new caregiver wouldn't have to fight their way out of a previous role, and your parents might give them a little more respect.

I keep coming back to what you said about your Dad driving his boat while doped up. I have a similar situation in my family - - my stepfather has clearly lost much of his short-term memory, and he gets lost or turns into the wrong lane. Mom feels she will be permanent chauffer to an angry, demanding and frustrated man if he can't drive himself. I wish he'd just fail a driving test and let the DMV be the "bad guy" who says he can't drive anymore.

Bottom line, I don't have an answer for your question. But one of our local hospitals just put out community education pamphlets on this. Maybe this is another question for your parents' doctors?

Good luck - - and make Sis get away for a bit, preferably someplace where she can get a massage!

[Bob Quick]

Just finished this with my mother. The age was different but the issues are the same.

My advice is to be proactive and push everyone from the docs to the public agencies. Get aall the paper work up to and including funeral plans in place. Wills, powers of attorrny, everything. If someone doesn't like what you are doing, assign them the task. After a rash of activity thing will settle down.

The toughest thing is the talk with your parents. We went to mom as a group after a crisis and she realized she needed to have someone else (me as it turned out) do things. You may have to wait for that. If the point of ability is past, than you may have to get a lawyer (not something I would like) involved to get custody or guardianship, whatever they call it there.

I've told my daughter that will be doing this for us that I haven't done her any favors. You have my thoughts and prayers. Not fun at all.
Bob

[Alan D. Hyde]

Please don't take this advice lightly:

"See another physician for a second opinion.

Their current physician may be doing all that's possible.

On the other hand, sometimes a change or reduction in medication can do wonders. And one physician may see or know or try something that another doesn't or hasn't or won't..."

Both of my maternal grandparents, with the restoration of a proper diet and with much reduced meds., bounced back, and had three more years of fairly active life before the years caught up with them irreversibly.

I know of several similar cases among friends' families.

Occasionally, different physicians prescribe dfifferent meds., without either knowing what the other has prescribed, and then the increasingly befuddled patient takes both sets...

IF nothing can be done, then of course the other advice above is good and proper. BUT, please don't assume that nothing can be done, until you verify that this is in fact so.

Alan

[cs]

This is a tough road, been down that road. Mom had very little money and it was tough making it stretch, but I did what I could to make her comfortable.

Might look at starting out with a retirment home where they serve meals and offer minimal care (ie cleaning the room). I started that way with Mom and as she needed further care than just I could offer we moved her into more advance care facillities. Don't be afraid to shop around and do visits at these places.

Sitting down and talking to your parents is all I can offer you. You don't know how they will react until you confront them with it. If they really need the help be firm.

Chad

[PatCox]

I am inclined to give Alan's advice a lot of respect. I am certainly not a doctor, but I see a profession that seems completely pill-happy and I have seen doctors who don't really seem to put any care or thought into just how many different things they are prescribing. And Ihave seen people on these meds start to suddenly look very very bad. I have wondered about this. I think I have read somewhere that drugs are hardly tested at all for interactions with other drugs.

[Gonzalo]

Ditto about Alan's advice.

My wife has worked with elderly people a lot in nursing homes, and has seen and heard LOTS of stories of people with either too much medication, the wrong medication, or multiple meds that interact with each other. Sometimes adjustment of the medications works wonders on physical as well as mental health.

Drugs don't act the same with all people, so substitutes can be tried that have the same theraputic value with fewer side effects.

[ 10-10-2005, 03:25 PM: Message edited by: Gonzalo ]

[George Jung]

A second opinion is certainly warranted; I'd recommend that, even if I was the primary doctor. That said, I'd like to congratulate PatCox; from my count, I'd call you 1 for 3! You ought to look at some of the medical trials; drug interactions are evaluated all the time; the problem is, there are so many drugs, and not everyone responds the same way to any given medicine, or combination of meds.
" Pill happy profession."... certainly no bias with you, Mr. Cox! It appears you have issues; maybe you should evaluate that agenda a bit, eh?
I mentioned you were 1 for 3 (certainly poor results). Are there Drs. who don't "put any thought into what they're prescribing, or interactions...."? Of course. The different personalities, the human limitations, are the same for Drs. as they are for anybody else. But I would have thought that was obvious.
Back to Figments' predicament. I don't know the specifics of your parents medical problems, but would strongly encourage you to pursue another opinion! They seem very young to be facing such significant concerns.

[Figment]

Things have progressed (and degenerated) in fits and starts since October. I'll spare the recant of all the ups and downs, and cut to the chase.

After a string of Family Meetings, it became clear that we were getting nowhere. Continued denial of the challenges they face, coupled with the (seeming) inability to retain the jist of those conversations, had us talking in circles.
We called in some Professional Help. They found a therapist, and did two sessions with that therapist on their own (so they'd have opportunity to "tell their side of the story) before the kids attended this third session.

After my parents left the session, the therapist's words were
I urgently reccommend you speak with an attourney about having them declared Incompetent. They clearly are no longer able to handle their own decisions.

That hit home. This is not a new thought, of course, but to have that thought voiced by a professionally qualified objective third party was enough to make my eyeballs click.

I think this hit my brother the hardest. He's getting married in August, and understandably would rather have his parents attend without resenting him.

so, thinking of the other side of the coin for a minute.... what are the chances that this therapist is a total quack?

[Meerkat]

There are organizations that provide volunteers to relieve a care-giver on a regular schedule.

Your parents may not be old in years, but they are old in medical condition. I suspect that 79 as the average age of admission to a nursing home is for otherwise healthy people who have just gotten too frail. I expect I may be in a nursing home before I'm 60, if not in the next year (I'm 56 in Sept).

[botebum]

Tough one Figment.
My parents handed over the powers when they realized they were terminal (Mom lives on:) )
Your brother's situation certainly plays on things and I empathize with him.
I hope there is no discord between you and your siblings on the subject.
You should choose between yourselves who will be the leader. That person will make the decisions. Votes will be taken on difficult decisions. Everyone has a veto right and any subject vetoed will be discussed until resolved or it resolves itself(not always good).
The leader has the most difficult position. Living near the parent(s) is imperative. Visiting (expected and otherwise)or living with is necessary. The ability to make instant decisions is necessary. Financial access is necessary. Giving your parents the impression that you are doing exactly what they tell you to do even when what you are doing is against their immediate wishes but for their own good- is necessary.

The night before my father passed I was leaving his hospital room and his words to me were "Tell those f**king nurses to bring me my f**king walker so I can go to the f**king bathroom by myself." (Dad really had a way with words) I told him that because he was weak he couldn't have his walker and he'd have to ring for a nurse. He was in the hospital now and they were the boss, not him. "Well, f**k you too then!" (What a guy!) I told dad that that's the way it was and that I loved him. He smiled at me, flipped me the bird, and told me he loved me too and thanks for being there for him, and to go the f**k home. I told him I'd see him in the morning and left.
As I was leaving his house for the hospital in the morning the phone rang. It was his nurse and she told me that Dad had passed in his sleep about 10 minutes earlier. The first thought that went through my head was-" Ya F**king Bastard! Ya could'nt wait till I got there???!!!God, what an asshole!"true story

Doug

[Henning 4148]

Haven't been down that road yet, but it's going to happen not too far away. Still, there is one point that might carry some hope for some time.

To me, just killing back pain with heavy painkiller seems a bit - how can I say - stopping short of attacking the problem. If there is a medical condition causing this pain, than a real treatment might still help. Anyway, as long as he is taking painkiller, he won't be able to take care of his back because he won't feel when he overloads it.

Once the cause for the backpain is gone, the need for the painkiller is gone and he should be up for a few more sensible years, which would help everybody a lot.

Just a thought.

[Figment]

No, no discord between siblings. We each have slightly different exposure to them and their issues, so naturally we each have our own take on the larger agenda, but the larger agenda is absolutely universal.

Henning, we wholeheartedly agree with your thought about the meds interfering with his ability to actually monitor his condition.
The real treatment for his condition doesn't really exist. There have been a small handful of surgeons who have been willing to TRY, but they all have been absolutely adamant about the fact that it would be completely experimental. Few conditions like his have ever been attempted, and only the smallest percentage of those have been successful. He's not willing to take the risk. He'd rather "stay active", albeit in a lot of pain, than take the risk of winding up in a wheelchair or worse.
Even if he were willing to try it, one has to ask if it's worthwhile given his lifestyle, which would just go back to doing more damage.

Meerkat, your point about age is spot on of course. Mom's immediate response to any component of this is that "she'll cross that bridge when she's 75 or older, but not now". Our pleas of "It's not about age, it's about ABILITY" have yet to make a dent.

[Mrleft8]

"so, thinking of the other side of the coin for a minute.... what are the chances that this therapist is a total quack?"
Greater than less I would say. IMHOP, "Therapists" are people who couldn't stand the thought of real work.
No doubt you have a signifigant, real problem here, but I wouldn't trust a "Therapist" as far as I could throw you. ( ;) )
Have you talked to any of your parents peers/friends about this situation?

[Tristan]

You got some very good advice. Man, they are awfully young to have such problems. Good luck.

[geeman]

We buried my mom about 3 years ago,,Dad is now dating again at the age of 75.Though he is mentally sharp his health is going down. It hasnt slowed his dancing down but he has trouble breathing and refuses to go to doctors.Each visit with him winds up with a small argument about a simple doctors visit.HE simply wont go.I dont know what to tell you as we cant get a grasp of the problem ourselves here. Just know that more and more people are going through the same problem.Your not alone .

[geeman]

Slightly off the subject here,I have noticed myself at age 54,and my wife being 59 with bad health,thinking more about life later on.I discovered the other day that I'm now thinking in terms of "seasons" instead of years.I find it strange that I think of life in those terms now and cant get a grasp of why that is so.In the terms I seem to be thinking now I tend to think in terms of how many more "seasons" of boating I have left.Very strange.

[Kevin G]

Not easy. You have mentioned many of the things that scare me, most of all being a burden and not being able to take care of my self. My wife and I are aged 67 & 65, both very healthy and active. All four of our parents lived well into their 80's and90's. Gotta love those genes.

A couple of years ago we took out two Elerly Care insurance policies. I know you have to be careful with these, and we researched carefully. Also got them from a fellow with whom we have done lots of business and been satisfied. Now my kids will have to spend neither their own money, nor their inheritance. We have policies that allow for inflation as the cost of care WILL go up. If you think you will get old (let's hope so), look into this type of care. It just might make you feel better. One work of caution, It ain't cheep.

[Another One]

so, thinking of the other side of the coin for a minute.... what are the chances that this therapist is a total quack?

Fig, whether or not you feel comfortable with this particular therapist, you already know from your gut what the reality is. Are you looking for justification from the therapist, or advice on how to handle the situation that you've already acknowledged?

In any case, good luck with a tough situation.:(

Jami

[mariner2k]

Fig,
Going through some similar things with my parents. I spoke with them both. On the financial end we all agree what to do. On speaking to them on there restrictions, or loss of abilities, my Dad was fairly understanding. He realizes his restrictions. (He can still drive) Mom...not so easy. ( I get my stubbornness from her)

Resign yourself that It will require a great deal of sacrafice. But that's ok...they're your parents. Enjoy them while your able to. Bob Cleek was very right in suggesting that they keep they're independance and self esteem, as much as possible. Alan Hyde was correct in a "second opinion". I had an uncle who was over medicated. He looked like he never knew where he was. This went on for a few years. someone figured out his meds were off. It was amazing.
From there he could drive , cook and take care of his ailing wife.
All of the advice you've gotten is pertinent. Your certainly not alone in this. Hope I helped.

Good luck, kevin

[Figment]

Are you looking for justification from the therapist, or advice on how to handle the situation that you've already acknowledged?


We were looking (hoping, I guess) to get some assistance in communicating the issues of concern. We weren't really expecting to be told that communication will be fruitless and that we need to (pardon the expression) Bring The Hammer.

As far as the "quack" factor goes, we have since heard from a couple of sources that this particular therapist has a less than stellar reputation. We're pursuing a second opinion from another who happens to also be a social worker, and therefore is more familiar with the mechanics of all of this.

As a side effect of all of this, I personally have lost all patience with my parents after their behavior at that session. I kept my distance for the weekend to give myself some time to digest and cool off, but monday morning it took about three words for my father to completely piss me off. I've been smiling-and-nodding and being nice and it's gotten us nowhere. I just don't have the energy to pretend anymore.

I've heard through the grapevine that the parents are upset that we children are "being so mean" to them. How am I supposed to have any respect for that?

[Ed Harrow]

It really is a no-man's land. Mum is 93, has macular degeneration, trouble with her knees and her memory (esp short term), well it just about isn't there.

We (sister and I) were concerned about Mum driving. Doctor said she's fine. Eye doc says her vision is OK. Police say there is nothing they can do. Seems to me that when folks get to some certain age that the very least should be annual vision tests. We're saved as there seems to be something in her car causing volts to head to ground so the battery is always flat. She got a new battery and the problem continues. She's cheap and doesn't want to spend money on the car; we're not complaining.

She's fought us everytime we've interceeded in her day-to-day affairs. We started with a helper a few hours a day, a couple of days a week. This was done thru a nat franchise org, Home Instead. We found them to be quite helpful. Anyway, Mum kind of got used to that, eventually. As things 'developed' we'd add another day of service. Mum is always saying she doesn't need the service, but she's not fighting us anymore (at least as much). We wanted to get her moved downstairs - same deal. Nearly over her dead body. We suggested a shower in the downstair's bathroom. No way. "Why on earth would anyone want a shower in a first-floor bathroom." We, essentially, did that behind her back. Her memory is such now that she might think it's always been there (no, not really). She does use it, and doesn't complain about it. These sorts of things are played out over, and over, and over again.

The long and short of it is that there doesn't seem to be the sort of support out there, unless you go really looking for it, that one might think would be available. An oft over-looked resource is the senior center/services that towns about here provide. The folks at the Senior Center in Mum's town were very helpful. You might check in with your equivalent. We also touch base with some of Mum's 'younger' peers to get their viewpoint as to Mum's situation. They are often a good touchstone.

Good luck.

[mariner2k]

It is very frustrating and it does try your patience. And you will have to take some time to yourself and regroup. Then you do what you have to do again. Not many of us are really prepared for this...there is quite the learning curve. Hell, I'm still learning.....I've been the "bad son" once or twice...

[Peter Malcolm Jardine]

"Nursing homes are all of the adults' assets less the house at $6k/month and then medicare kicks in."


Is this a relatively accurate figure???

[py]

Hey Figment, we are pretty much in the same place. Mum's second husband died a few years back, leaving her on her own. She's not very active, doesn't have a lot of friends. She's 68. Started getting a bit forgetfull, trouble finding words, keys, thoughts. Didn't feed herself very well. Was still driving, but hasn't been a confident driver for a long time. My brother lives 500 miles away, my sister is on the other side of the world. We are not a close family, parents split when I was 10 or so, and I lived with dad. But basically me and my wife (and I have to say she's doing a lot more of it than me) have been left to look after mum. I kind of resent that, because we are not close, and I'm probably going to end up spending more years looking after her than she ever spent looking after me. That kind of sucks. (OK I'm selfish and shallow).

Anyway, really what did it for us was a medical crisis, she got a UTI, which threw her mental state into a spin, (apparently that happens), through a crazy series of events she ended up in the emergency ward of a hospital, and has not been back to her home since. Couple of weeks in hospital, a few weeks staying at our house (try to avoid that!) back to hospital, then a nursing home, now a retirment home which offers a reasonably high level of care.

That's the last two years.

Its really hard. She knows her mind is shot, she forgets things, she finds all that pretty frustrating, she's often in pain for one reason or another, back, bowels whatever, she resents what's happening to her, she tends to be pretty miserable and often unco-operative. She has been down right rude to my wife, who spends about a day a week on average looking after her, taking her shopping, to doctors, paying bills etc etc. My wife is great at marshalling the doctor, the retirement home manager, a part time carer we have hired, and between them all shoehorning mum into taking her meds, or going out to a concert, or doing whatever it is that needs to be done.

We got a lawyer friend to witness the powers of attorney etc, he was prepared to say she understood what she was signing. I'm not so sure. Although sometimes she seems perfectly rational and sane and can carry on a sensible, intellectual conversation.

Your dad driving his boat at 25 mph scares me silly. Has he seen that picture of a boat, I think its called "Temporary Insaniity" wrapped around a beacon? Find it, show it to him. If neccesary do something to bust his engine. Drain the oil and disconnect the warning light or something.

What can I offer? Your parents won't agree with everything they need to do. They will be resentful, angry, nasty. To you, your wife, your kids, your sibs. Forgive them, they are not in their right mind and they are having a crappy time. Maybe there has to be a crisis. maybe you will need to withdraw your support for a couple of weeks, or a month, let them see how much they are relying on you, and taking you for granted, and that things have to change. They aren't rational, so you can't neccesarily just talk them round.

If you are carrying the can, your sibs need to acknowledge that. You need them to acknowledge that. My brother comes to visit every few months, not much real help, but at least he can get some sense of how thigs are. Mum got stuck into his wife once, which was great, gave them a good taste of what we get a lot of.

Don't be afraid to get the doctor, the carer, the therapist, the social worker and the neighbors all to gang up on your parents if that's what it takes.

All those support services that you kind of assume are there somewhere in the system-they aren't. or if they are, they are in the wrong place, or there's a 6 month waiting list, or your parents just won't accept them anyway.

Its a really horrible time, it will take a heck of a lot of your time and energy, and there's no upside.

Jeez, I hope that helps!

[Harry Miller]

A quick thought, here in Ontario it is illegal to drive while taking prescription pain meds. What are your laws?

I am a physiotherapist and have worked in geriatrics. We saw people who were elderly or who had symptoms that were those of aging. Do you have a geriatric assessment team in your area. We touched on memory, meds, competency "in Ont. a medical function" ability to drive as well as home safety and level of care needed.

Does the MS society have resources for competency/ housing needs for your Mom?

You are dealing with this fairly early on. Harry and I are older than your parents and so far well.
We have both gone your route with our parents and know how hard it is. I was blessed by my mom who gave me permission when she was still with it that I do what was in her best interests when she could no longer make her own decisions. It helped me through a few tough days! We should all plan ahead so our kids don't have to guess our wishes. There is no better gift !

You have had good advice, let me know if I can help.
Mary

[brad9798]

Sorry to hear that ... 60 and 62, respectively is rather young for incapacitation ... that saddens me to hear that.

Of course, neither of my wife's parents even made it to 60!

A second opin. is in order, as Alan says ... it's worth the investigation, especially when looking at 10-20+ years of taking care of them.

I wish you well.

Brad

[brad9798]

"We should all plan ahead so our kids don't have to guess our wishes. There is no better gift !"

WELL SAID, Mrs. Miller.

[George Roberts]

Peter Malcolm Jardine ---

That is what my mother-in-law pays. Her assets, less her house, will run out this year. At that time medicare will pay whatever they pay and the facility will accept that amount. (The nursing home often fails to cash checks for months at a time. I expect they get very few checks - perhaps 2/month out of several hundred rooms.)

There are a lot of "strange" rules:

If you are in a nursing home and need hospital care for 3 days, medicare will pay for 90 days of nursing home care following your hospital release. Hospitals try very hard to keep the day count down to 2.

While a person is paying for their time at a nursing home, he is free to leave for as long as he wishes and still return. While medicare is paying, he can only leave for 17 nights/365 days.

[brad9798]

A pitch for all young folks to obtain long-term care insurance at an early age ...