Your parents' old age: share your stories, help me get ready

Right now my mom is 59, my dad is 66. They are in pretty good health, as far as I know. If one or both was to suddenly become dependent I think I would be overwhelmed and clueless. I am still used to having them for ME to fall back on.

Tell me what has happened/been happening in your family as your parents, grandparents, other relatives have aged and needed more help. Have you made mistakes? How did you figure out what to do? Who helped you?

Thanks for giving the straight dope.

If I had only one piece of advice, it is this.

Have a clear difficult discussion with both of your parents about their wishes should they become incapacitated. Make sure they have a living will.

This is the advice: **Make sure they also communicate their wishes to someone other than you, who is not a blood relative. ** My mother didn’t just tell me, she told my husband about her intentions. When my mother had a stroke and was paralyzed, I was an emotional mess. I said to my husband ‘I’m not sure I can make this decision.’ He answered ‘You don’t need to make a decision - your mother had already made her decision, and you are carrying out her wishes.’

The first word is --Patience.
They cannot see clearly, think/react quickly, hear clearly anymore.
They tend to repeat things quite often.

Heart attacks are horrifying. They shall happen: learn Red Cross CPR now. Not afterwards.

Love them, even if you can’t understand them at all.

The time spent with your family is a marvellous adventure–live it to the fullest.

You can’t “get ready,” because you don’t know what’s going to happen. My father died of a quick heart attack at home (at 73), my mother was in good health till she had a stroke at 82. We had to scramble and find a good assisted-living facility in her area (we got the advice of visiting nurses and physical therapists, who saw them all). Assisted-living facilities (unlike nursing homes) don’t take insurance, nor do the private-duty nurse she needs, so the money is pouring out.

Now I’m in charge of Mom’s legal medical and financial affairs; talk to her on the phone several times a day and visit once or twice a month. She may live another five or even ten years, her mental and physical condition steadily going downhill.

My sister and I have agreed—in all seriousness—we’re going to commit suicide at a certain point, because everyone on our mother’s side spends their last years dying by inches in hospitals or nursing homes.

Note to self: don’t get old.

(Damn—too late)

My in-laws are 80 and 76, and taking care of them has become almost a full-time job. Dad is still sharp as a tack but in very bad shape physically; Mom is starting to slip mentally and physically. Last year, after he ended up in the ER and it was discovered that he was dehydrated and slightly malnourished, my husband and his brother were able to finally convince them to sell the three-story family homestead and move into an “independent living” condo complex.

Dad has had esophageal cancer, a double bypass, prostate cancer, kidney stones and has bad arthritis in his back and knees. His balance is unsteady, and his stamina is down to nothing - walking from the car to the front door causes him to sweat profusely and stop to lean against the wall a couple times. Last week he was back in the ER because a kidney stone broke free and was lodged between his kidney and bladder, preventing him from urinating. He spent four days in the hospital on IV fluids and antibiotics. He takes twelve different medications every day, and is currently facing prostate surgery - but first he has to be seen by a cardiologist, to make sure his heart is up to the procedure.

Mom has osteoporosis so bad that she has become hunchbacked. She uses a walker and it takes her five to ten minutes to get from her bedroom to the kitchen. Her senses of taste and smell are just about gone, so she can no longer be trusted to cook (hence Dad’s malnutrition - she won’t let him in the kitchen to make food for himself, and when she feeds him it’s a 50/50 chance that the food is spoiled.)

It’s been a constant circus of doctor visits - neither one can drive - for tests, “procedures,” surgeries, pharmacies. I took Dad to the VA because ONE of his medications cost him several thousand dollars a year - through the VA he was able to get it for less than $200 a year. Last year they spent, out of pocket, $17,000 just on prescriptions. And that’s WITH Medicare and Blue Cross coverage. Growing old is not for sissies.

I’m a stay-at-home mom for the most part, while my husband, his brother and his sister-in-law all work full time, so I’ve been the primary caretaker-type person for the last couple of years. I don’t know that I have made many mistakes, but I have had to lecture myself about patience from time to time. As Bosda said, they are starting to repeat themselves and to forget important things and they move very slowly. Doctors and nurses are only human, and sometimes they can be unwittingly insensitive. I have had to question medical personnel in GREAT detail to make sure that I understand what they’re doing and occasionally I have had to throw full-scale tantrums to ensure that my in-laws don’t get shuffled to one side or sign things they don’t understand.

I drive to hospitals and clinics, sit in waiting rooms (buy a Palm Pilot, it’ll save your sanity) and argue with doctors just about daily. I’m also called on to soften the blow when there’s bad news, and sometimes I have to “finesse” my in-laws into doing the things they have to do.

Let me be very plain-spoken here: it’s a pain in the ass sometimes. It’s very easy to get impatient and upset and even angry, with them, with the doctors, with the loads of bureaucracy. I love my in-laws very much and I am truly glad that I CAN be there for them, but it is hard work. I worry every time I take one of them to the hospital that this time, they might not come out, and I have to wrestle with guilt on those occasions when I silently wish that they’d slip away peacefully in their sleep.

SO… my advice to you: be prepared to stand up for your parents, 'cuz you’ll have to do it a lot. Make sure while they’re still mentally sharp that they have their paperwork in order (living will, insurance stuff, DNR orders, whatever.) If they’re living in a home that requires upkeep, be prepared to be on the phone a lot with snow removal people and plumbers and the like. Be aware of fast-talkers who will try to take advantage of their “diminished capacity.” Familiarize yourself with whatever passes for Senior Services in your area - you’re going to need their resources. In matters of physical ability, keep a close eye on them - falls are dangerous and sometimes preventable. Learn first aid if you don’t already know it. BE PATIENT, be understanding (this aging shit is a lot harder for them than for you) and be firm. Understand that keeping their pride is sometimes a priority (I have to make up amusing cat and dog stories to entertain my father-in-law and let him keep some dignity while I flush his catheter.)

And good luck.

Carlotta - this may not be much of a help, I think your question is justified, but don’t dwell too much on potential problems instead of enjoying the time now.

My parents are almost forty years older than me, I spent a lot of time in my twenties worrying about their age and thinking about what would happen when they died, how sad it was they would be ‘old’ grandparents &, my personal favourite, the paranoia that Dad might have a stroke and wake up only able to speak his mother tongue, Welsh, thus no longer able to communicate with us etc. etc. Well they’re still not grandparents, Mum fell and broke her pelvis a few years ago and usually walks with a stick now, Dad has always had a dodgy chest and now takes what seems like forever to get over a cold but, for 73, they’re doing pretty well. (Touching wood as I type.) And yes I know how lucky I am.

I don’t take them for granted, we don’t live in the same country but talk once every five days or so. I worry about them in an almost parental fashion (ie are they doing too much, should they really be getting the bus at that time of night ?) but, gentle teasing aside, I don’t let them know that. The one thing worse than not being able to do what you used to do is people reminding you that you are losing your independence. I get them to a taxi now rather than using an airport bus but make it seem like I’m treating them rather than sparing them hassle you know ?

I don’t think this is your case but my situation is further complicated since Brits of their generation don’t readily accept weakness or needing help, they are very private (I only found out exactly how/when they met on their 40th wedding anniversary!) so rather than asking Dad how he is I’ll ask Mum and let her get serious/reassure me if she wants. Oh and they’re retired doctors so know more about any medical problems they are having than I ever will.

Always treat them like adults, with respect, and enjoy as much time with them as you can.

Thanks for the responses so far…
A few questions

Eve whose money is pouring out? Your mom’s, yours and your sister’s? Do you think the money will run out? Then what?

LifeOnWry how old are your kids? do your obligations to in-laws and kids ever conflict? do you ever have kids w/ you in waiting rooms for hours? You live in the same town as your in-laws?
Cat Jones I do enjoy them now! They are some of my favorite people to be with! Do you forsee having to move back to your parents’ country should they become incapacitated? Is that possible for you? Do you think the services available in Britain for them will be adequate?

I have a fifteen-year-old daughter. She’s pretty independent - she can stay home alone and tend to the beasties (a dog and three cats) if I can’t be here. Conflicts are rare; if I had little ones it might not be so. The worst thing we’ve had to deal with in terms of scheduling has been a chorus concert we had to leaving in the middle of. We alerted another set of parents my daughter knows well, and they took her back to their house after the concert. Cellphones come in handy for stuff like that. Since most of the doctor appointments are scheduled during school hours, she’s not sitting in waiting rooms with me then either.

My in-laws’ old house was about three miles away, but the condo complex they’ve moved to is less than a mile from my house, so that’s very handy.

I should also say (thinking of Eve’s situation here) that we’re extremely fortunate in terms of finances with my in-laws. The condo they bought was very expensive, and they pay a huge monthly “association fee” that covers a lot of amenities. Just to give you an idea - we’re in the suburbs of Chicago, and the condo was $280K, plus the monthly association fee is $1300. The other choices for senior living around here are section 8 apartments with NO amenities, or nursing homes - mostly state-run, underfinanced, and understaffed. Getting decent nursing home care is as expensive as buying a new home. It can bleed you dry in short order, but you get more peace of mind.

I have nothing but sympathy for Eve and her family. I can’t think of anything harder than what she’s going through with her mom.

My parents are still okay. They both have health issues (diabetes and cancer recovery), but can take care of themselves. They made the decision to move to a senior community when my Dad retired. It’s a gated neighborhood of prefabricated homes with small gardens. There’s a clubhouse that provides a number of services, including meals for shut-ins, some physical therapy and massage and some entertainment choices. I don’t really care for the place. It’s very nice physically, but the oldies-only atmosphere can be kind of oppressive at times (like when we got told off for letting our barefoot baby walk on the bowling green.) They really like it though. They feel secure when they are there and when they leave their home to travel.

We’ve had “the talk” recently and my husband and I both know where to find the trust documents and so forth. I should probably talk with my brother about it at some point, but he tends to get freaked out about such things.

Thank goodness Mom is well-off and can afford the best care. All the money she’s inherited and made and saved—I can’t bring myself to tell you how much her care costs per month, you’d all faint dead away. Her broker is assisting me with making sure we don’t over-spend, but still spend everything we have to to keep her as safe and comfortable as she can be under the circumstances. And of course when I visit, every cent of expenditure comes out of my pocket, not hers.

My sister and I will be perfectly happy if there’s not a cent left for us, as long as Mom doesn’t outlive her money (my sister and I would spend ourselves broke in just a few months if that happens). Mom’s broker basically has a calendar with “you have to be dead by this date” on it.

So I’m no longer a madcap hairess, I’m just madcap.

What happens if they become physically or mentally disabled? Can they stay there, or will they get the bum’s rush? A lot of these places are for “independent-only” residents.

carlotta, basically what happens when an older person runs out of money for their care is that they end up on Medicaid. This happened to my maternal grandmother - while there was an assisted living facility/nursing home she wanted to go to, she could not be placed there because they did not take Medicaid. She ended up in another facility that would. All the money she had in the world ran out in about 18 months - in Ohio, at least, you cannot have more than $700 in assets to qualify for Medicaid. The nursing home had a social worker who handled the paperwork.

My other grandmother was more fortunate. She had a lot more money and was able to go to a facility she liked, where she stayed until she died.

My own parents are getting to the point where I don’t think they will be able to stay in their own home much longer, but it’s absolutely impossible to talk to them about it. Stubborn as mules, both of them, but at least they do have directives written up so if they become incapacitated there is some guidance. They spend about $12,000 a year on medications. It’s ridiculous and I have to wonder how bad it has to get before we have health care reform in this country. Besides the fact that getting old isn’t for the faint of heart, do they really need to be sucked dry of all their lifetime earnings? Makes me wonder what happens to the next generation, too, since only the truly wealthy will end up with any inheritance at all, and so many kids today start out behind the 8 ball with huge college loans they need to pay back before they can even consider saving anything of their own.

Plus, by the time my sister and I (and people our age and younger) need Social Security and Medicare/Medicaid, they won’t exist anymore—and the nursing home/assisted living situation is only going to get worse as they get more overcrowded and understaffed.

Suicide, I tells ya. Start savin’ up the pills.

No, the place really isn’t set up to provide much care beyond delivering meals. They have neighbors who no longer drive or go out much, but as far as I can tell, they are cared for by friends or relatives. No one under 55 is allowed to buy a house or live there, but there is an exception if you are caring for a relative. We haven’t discussed it yet, and I know we should. I know how they feel about medical treatment if there is a catastrophic illness, but not what they would want for something longer term. My parents have saved enough that I don’t think money will be a big problem and California has a lot of seniors, so there should be enough options.

None of my grandparents went to nursing homes. My maternal grandfather was bed-ridden for years after a stroke and my grandmother cared for him herself. All the rest of them died fairly quickly after heart attacks, but were pretty independent before that.

I think you’ve inspired me to bring it up next time we visit, though. My husband doesn’t have any contact with his dad and his mother died of lung cancer at 60. I dearly wish she could have lived to see her grandchildren, but at least we will only have to go through this on my side of the family.

Believe me, I’ve thought about it. I’m an only child with no children of my own, and I doubt I’ll ever have a couple mil in the bank to pay for professional care, so if I don’t get lucky enough to just up and croak, the Hemlock Society will probably start to look pretty good to me.

My husband and I have shared our home with two elderly relatives: first my husband’s father, and then my father.

My husband’s dad was a delight. Although he was quite feeble in body, his mind was sound, and he was a gentlemanly, thoughtful person. I loved him dearly, and I do not regret a single moment of our time together. When he died peacefully in his bed (in the largest, nicest bedroom of our home), I felt a great emptiness. I miss him still.

My own dad, on the other hand, was a wretched, mean-spirited, manipulative man whose incessant demands, threats, and hateful remarks hurt me deeply and nearly wrecked my marriage. When he died peacefully in his bed (in the largest, nicest bedroom of our home), I felt nothing but relief and regret: relief that he would not be able to hurt me any more, and regret that I had ever allowed him back into my life.

My advice to anyone who is considering taking care of a relative in a home setting is this: before making the decision, think back on the worst times you’ve had with this person in the past. Imagine what it would be like if those times were extended day after day for several years. Could you maintain your own health and sanity, and would your other relationships with loved ones remain intact? If not, consider placing your needy relative elsewhere. You may feel that you owe your parents a lot. But you do not owe them everything. Do not place your health and life and mental well-being in jeopardy.

When Mom had her stroke, my first thought was, “I’ll move down there, or move her up here, so I can take care of her.”

A little thinking-through showed this to be impractical. I didn’t want her to leave her lifelong neighborhood, as well as her friends, doctors and shops. And if I quit my job and moved down there, she’d still need the kind of 24-hour professional nursing care I couldn’t give her (and how would I support myself?). When I hear people talk about children who “dump their parents into homes,” I get furious—she’ll live longer and happier and healthier there than I could make her.

She doesn’t like where she is—“Agatha Christie House,” I call it—but she recognizes it’s a necessity and that she’s lost her independence and can’t live alone. Depressing and demoralizing for someone who was a 24-hour-a-day perpetual motion machine, always doing something. Now, just making it down from her apartment to the dining room is an exhausting and confusing trek.

My parents were older (when I was born, dad was 66, mom 42), so I faced a lot or things a generation or so ahead of people my age (I’m 45).

I don’t claim to be an expert, but many of the biggest headaches my two brothers and I faced dealt with health care financing and estate planning.

In a nutshell, state governments are trying to cover the increasing cost of health care for the elderly. To do this, they are getting more and more intrusive into families’ personal affairs. This was less true in 1980 when my father died, but we encountered it a lot with my mother.

Nursing care is not covered by Medicare, so if you wind up in a nursing home, you have to spend all your money until you’re eligible for Medicaid before you can get help with the costs.

My mother suffered for the last decade of her life from vascular dementia, which has symptoms similar to Alzheimer’s, but did not cause her physical health to deteriorate. So she was able to live in an assisted living facility, which is much cheaper than a nursing home. So the cost was supportable by her income, with some help from my brothers and me. Had she required nursing care, her small estate would have been eaten up in about a year.

My brothers and I are lucky in that we were all on our feet financially – had any of us been needing to inherit her house to live in, it would have been tough to see her forced to sell it off to pay for her nursing home bills. (And your parents can’t simply sell you the house for a dollar the day before they move into a nursing home – state Medicaid boards, in trying to cover the increasing costs, are mandating longer and longer periods prior to need when a patient is not allowed to dispose of assets without having it count in their net worth).

OTOH, the fact that no one in our families was at home full time (I’m single; both my brothers are married, but their wives worked outside the home) meant that once she had been declared infirm, we were forbidden by law from moving her in with us unless we provided round-the-clock care, which was beyond our means. I’m quoting West Virginia law here – your state may vary.

Advice I would offer families with aging parents:

See an estate planning lawyer while your parents are still alert and vital. A prerequisite of this is give your parents reason to trust you with their finances.

If you can afford long-term care insurance, get it. I don’t know much about the subject – it was a decade and a half ago that mom became infirm, and there weren’t many such insurances available then.

Discuss plans well in advance. My older brother lived in the same town as mom, so it made sense that he would take on a bigger share in her care. The fact that it wasn’t just dumped in his lap made it much easier for him to accept. (As a result, my other brother and I insisted, over the older brother’s objections, that he receive a bigger share of mom’s estate).

In the words of Dear Abby, you never really know someone until you split an estate with them. I feel very lucky that my mother’s hardships brought my brothers and I closer.

Spend time with your parents, picking their brains on family history and the like. Even in the grip of short-term memory loss, many people can recall the distant past with surprising clarity. Doing so may help slow their decline, and will provide you knowledge you will treasure for life.

PS: I wrote this earlier this morning, and just before I posted it, my network crashed. Apologies if others have made the same points as me.

My parents are still young and healthy (well, relatively young) but I know a little about my grandmother’s health care. Grandma is in assisted living and the per week cost is unbelievable. Of course, the trade of is that it is a really nice place where she is living. And, baring something unforeseen, she is unlikely to outlive her money.

Some things I haven’t noticed being mentioned. Older persons often become profane and abusive to the relative who provides the most care. (I won’t commit to them not doing this to non-relatives, I’m just saying that I’ve never heard my grandmother swear, but she frequently swears at her number one son, the closest relative). Accusations of theft are not unusual (though we haven’t had to deal with that yet).

My grandmother’s mental image of herself is stuck back at least 10 years, probably closer to 20. (She’s in her mid eighties now). She still thinks she can climb mountains with the best of them, and is more mobile and capable than anyone will give her credit for. She insists that she holds an arm whenever it is convenient to do so because she feels sociable.

She refuses to go to activities sponsored by the assisted living facility because the people there are all “old people”- though many of them are in fact younger, healthier and more mentally put together than she is. Some aren’t, of course, but I’m sure she doesn’t see what we see when we look at her.

She “lost” her ability to tell you what was going on in her life a long time ago. I’m not sure that that expresses it well. It’s related to memory, but I’m referring to the general way that if you ask someone a question like “did you have a good weekend?” Most people will say something like “yes, I went to the museum/movie/park” etc. then you follow up on that. She’s long ago quit answering that way, one needs to ask her if she saw “Movie X” to get any kind of an answer, and probably not even then.

The daughter of another aging relative comments that she calls her dad every morning and asks him if he fell the day before, because otherwise he’ll “forget” (true forgetting mixed with a significant dash of not wanting to admit that he fell and causing her to worry). He’s in a senior center where they provide meals, but if he needed true nursing care other arrangements would need to be made. Unfortunately, if you don’t live near a big city, options between near independence and nursing homes may be limited.

Even before my grandmother’s health started declining, some of her more exasperating character traits became more noticible. She didn’t want to come visit my parents because it was “too much effort” (yet she could fly off to foreign countries if she wanted to). She has put herself in harms way more times than I care to remember, and always came out alright, so it is really depressing to know that she now spends much of her time in front of her tv, asleep.

I work in annuities, so I’ve had more experience with the elderly and their children than would be suggested by my age. I can’t speak as to the emotional impact of these situations, but I can get one bit of advice:

If you have significant assets, consider getting a power of attorney before things get too bad. Speaking as the person who will be listening to/processing your requets, things go much more smoothly if we have that piece of paper on file. If you need to withdraw money to pay for, say, medical expenses, we’re going to need the signature. Having the POA on there means you can sign for them. If you need the money, it’s probably going to be an emergency; best to have everything on file.