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You know you are getting old when you hang a pendant around your neck with a button on it. Now, I know you have seen that commercial where the woman falls in the bathtub and lies there, unable to move, until her daughter shows up four hours later.  As horrible as that prospect sounds, there are two reassuring features about that commercial:  first, it was not her son that found her in that situation; and second, at least there was someone, daughter or otherwise, who had the key to her house and came over to see her that same day.  If I fell in the bathtub and broke my hip, no one would find me until the landlord decided to evict me for not paying the rent.  And so, around my neck the pendant hangs.

On the one hand, a medical alert system allows us to keep our independence, in the sense that it allows us to continue living alone instead of moving in with our children (if we have children, that is).  But on the other hand, it is an acknowledgement that we need some kind of assistance, even if it is only from the operators who are ready to help us should we fall, something that never crossed our minds when we were young.  By hanging that pendant around your neck, you are made aware of the fact that you are losing your independence in the very act of trying to preserve it.

But that we can joke about.  The real loss of independence begins when we give up the keys to the car, knowing we will never drive again.  Then what?  Setting aside the question of cost, a not insignificant consideration, the next logical step in trying to preserve some degree of independence is having people come to our home to provide us with various goods and services, such as transportation to the store, help with bathing, and Meals on Wheels.  Or, we can move into an independent living community, which is essentially an apartment complex replete with all sorts of amenities for the elderly, such as a shuttle to take people to various stores, bathrooms that have grab bars, and a cafeteria on the premises.  When it is no longer safe for us to be around an oven, or when we cannot remember to take our medicine, we can move into an assisted living facility.  And finally, when our mental or physical limitations become severe, we give up the last vestige of independence and move into a nursing home.

I once imagined that my mother would proceed through each of these stages in just that sequence, in what might be thought of as a natural progression.  However, because she had me to help her, she never needed to be in an independent living facility, and then, all of a sudden, she went to the hospital, and from there to the nursing home.  For the next two months, a nursing home was exactly what she needed.  But then she got better, at which point, putting her in assisted living became a genuine possibility.  Not only would the cost be less, but also she would have a private room.  And, inasmuch as my plan met with the approval of the nurse practitioner and other professionals in the nursing home, I decided this was the thing to do.  What may be critical to what follows, however, is that this was the reverse of the natural progression.

I cannot, of course, speak for all assisted living facilities.  I can only relate my limited experience in this matter, which you may regard not as laying down a set of absolute truths about all such facilities, but as something to be aware of as a possibility.  First, there was a fee to “enter the community,” which was $1000 at one place, $2000 at another I considered. Second, they required 30-days notice in case my mother should need to move out.  To put these two items in context, it must be borne in mind that at this stage of life, a lot can happen in 30 days.  In other words, I might have paid the fee and moved my mother in, only for her to undergo a sudden decline in health two days later, necessitating a move back to the skilled nursing section, forgoing the fee and a month’s rent in the process.

Then I found out that the rooms were not furnished.  Maybe I should have known better, but I thought the rooms would come with a hospital bed, a dresser, a chair, a lamp, and so forth, just like the rooms in a nursing home.  They did not.  Fortunately, the manager had a lot of donated furniture in storage that he let me borrow at no charge, or else I would have had to spend a lot of money setting it up.  The bed could have been a real problem.  My mother needed more than just a twin bed; she needed as hospital bed.  Fortunately, again, the administrator was able to get Medicare to pay for a rental.

Then I had to buy sheets, towels, wash cloths, and the like.  In other words, stuff that was supplied automatically in the skilled nursing section would have to be supplied by the tenant in an assisted living unit.  At the department store, as I was about to buy three sets of sheets for my mother’s bed, I had the good fortune to be waited on by a woman with experience in such matters (she had been a caregiver for her father).  She informed me that a hospital bed needed extra long sheets, since hospital beds are slightly longer than twin beds.

As for the towels and wash cloths, you may be wondering why I didn’t just use the towels and wash cloths that my mother had had in her apartment.  The answer is that I had already let go of her apartment, and had found it necessary to throw away a lot of good stuff that was simply impossible for me to stash in my own place.  So now I was going to have to replace much of what I had just thrown away.  One of the CNAs (certified nursing assistants) told me that I would need towels not only for my mother to dry with after bathing, but also for the CNA to wipe up the water on the floor that would inevitably be there when she used the handheld showerhead to wash my mother.  Without giving it a second thought, I bought a bunch of white towels.  When she saw them, the CNA announced, in a manner that would brook no exception, that I would have to buy colored towels, because white towels must never be put on the floor.  I was so awed by the gravity of her demeanor that I accepted this pronouncement without question.  As I had already put my mother’s name on the towels with a marking pen so that the laundress would know to whom they belonged, it was too late to return them.  So I bought a bunch of colored towels, and put them in the cabinet next to the white ones.  Three days later, I saw another CNA, who had just bathed my mother, wiping up the water on the floor with one of the white towels.

Then there is the toilet paper.  Even that had to be supplied by my mother, which is to say, by me.  Now, I was not worried about the cost of the toilet paper or other sundry items (facial tissues, soap, toothpaste, etc.).  The problem was that even with the availability of a shuttle to go to the drugstore, my mother was not really capable of handling money or remembering what to buy.  And while I visited her every day, and would normally be able to buy the items myself, I do get sick from time to time.  A mere cold can incapacitate me for a week.  What would happen if I got sick just when my mother needed more toilet paper?  In fact, I had surgery scheduled for myself the next month, and I could not be sure how long I would be convalescing.  In other words, when my mother was in the skilled nursing section, the room was furnished and supplied automatically, and even should I be sick for a month, I would know that she would be completely taken care of.  In the assisted living section, the situation was somewhat more precarious.

After about six weeks in assisted living, my mother fell twice, each time in the middle of the night.  Since the assisted living section is less staffed at night, I was told I would have to hire a sitter for her during the nighttime.  This additional cost would have completely defeated the purpose of having my mother in assisted living, and so I moved her back to the skilled nursing unit, where, with hindsight, I guess she really belonged.

I hope that I will not be misunderstood.  Assisted living is perfect for many people, and the one where my mother briefly stayed was excellent.  I simply was not prepared for all that was involved in placing my mother in an assisted living facility, the result, no doubt, of backing into it from a nursing home, instead of following the natural progression.

Originally posted to disinterested spectator on Fri May 04, 2012 at 04:32 PM PDT.

Also republished by CareGiving Kos and Community Spotlight.

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Comment Preferences

  •  A suggestion for others who might be wondering the (11+ / 0-)

    same thing about buying sundries for loved ones in assisted living facilities.  As I live in an isolated area, I have come to rely on online merchants.  It is not difficult to establish a regular delivery of non-perishable items.  Amazon actually offers a discount for goods purchased this way.  Cancellation or change are easy to accomplish online as well.  

    I use it for the solution for my electric cat litter box, coffee pods for my espresso machine and personal hygiene items that save me at least an hour long drive.

    "I cannot live without books" -- Thomas Jefferson, 1815

    by Susan Grigsby on Fri May 04, 2012 at 04:59:52 PM PDT

  •  The natural progression you describe was (16+ / 0-)

    the original intent of integrated living communities, some of which were built with independent living, assisted living, and skilled nursing facilities on the same property. I doubt it is any longer -- if it ever was -- the typical progression. Assisted living marketing people spend a lot of time cruisin' & schmoozin' hospitals and SNFs.

    IL & AL communities, nicely landscaped, faux-fancy dining rooms, fresh baked cookies and all, were first pitched as a life of leisure in your golden years. No more mowing the lawn or worrying about the leaky roof. Sell that home that appreciated like mad in the housing bubble, move into Friendly Acres and enjoy yourself. (I'm talking from California experience, but I think it holds in similar real estate markets.)

    Then the bubble burst. The mostly healthy folks who would once have bought into these communities decided they couldn't afford to sell the house, and would just bring in help when they needed it.

    As a result, an AL facility will fill its census by bringing in more infirm residents -- often SNF patients who have run through their Medicare rehab benefit or folks too healthy for a SNF but no longer able to live alone. Unfortunately, the AL facilities did not change their staffing models sufficiently to accommodate the population shift. So they've got minimum wage CNAs who are often quite caring but are disastrously undertrained and working multiple jobs, inadequate "wellness center" staffing (because "we're not a medical model"), and medication managers who got about 10 hours of training to move up from the laundry room.  

    Meanwhile, food prices soared -- so much for the classy menus and the chef's toque and the filet mignon. Pass the canned green beans and Jell-O.

    Everything else you've said brings back so many bad memories I can't even address most of it now -- and my mother was also in a very good place. Just one extra twist: her AL facility not only had the 30-day notice of leaving, but the notice had to be given on or before the first of the month. So, you fell on the 3rd of July & we can't care for you any longer? Too bad. You owe us for July and August. There's a special place in heaven for some of the caregivers in these places, and a special place in hell for the corporate owners.  

  •  disinterested spectator, thank you for doing (15+ / 0-)

    this series.  It is an invaluable service.  The information you are providing will enlighten others & perhaps lessen the stumbles on their own journey.

    I wish I had known any of what you share when I was frantically trying to help my mother.  Today, 5 years later, I still am stunned by what I did not know & how totally unprepared we were.  

    My parents were the type that pre-planned everything-including pre-paying their entire funerals.  What they did not do was have documents & plans in place for the "what ifs" while alive.

    And their child (me) & remaining relatives were lulled into a false sense of security by their fierce independence & their habit of personal responsibility & pre-planning.

    In hindsight, I realize this was something I should have discussed with them.  It is too easy to see your loved ones as they always were & not realize the what ifs that can suddenly change them overnight.

    •  Not easy to consider (5+ / 0-)

      but we should also consider the "what-ifs" that can overtake any of us.  Sometimes way before logic tells us they will, because of accident, misadventure or various hidden treasures in the genetic tree.

      We all need contingency plans and clear communications with our loved ones and relatives regarding our wishes.

      Democrats give you the Bill of Rights; Republicans sell you a bill of goods!

      by barbwires on Sat May 05, 2012 at 10:20:28 AM PDT

      [ Parent ]

      •  Totally agree. After the what happened with my (5+ / 0-)

        mother as well as the aftermath of her death, I came home & promptly made sure docs were in place & that my adult offspring knew about them & my desires regarding "what ifs".  

        My offspring reacted just as I did long ago when my parents annointed me with keeper of their death wishes.  

        Sigh, but at least now they know what/who/where/etc in life or death..even if they do not yet realize that I've made their path easier when the time comes.

        Although I do admit to punking them when they started arguing to stall me.  I told them that I had made arrangements for a taxidermist to stuff me so they could take turns keeping me at their homes.  Priceless, the look on my dear young DIL face.  Poor dear believed me....(Did stop the stall tactics though...cackle)

  •  Thank you. This is the journey I am literally (9+ / 0-)

    embarking on tomorrow. My 87 year old mother, who lives in another state, has managed to cancel some of her health insurance, not paid her income taxes and a host of other things. I have four days to straighten out her life and figure out what to do with her next. My brother, who lives 5,000 miles away is "relieved" that I'm going to take care of it. He claims that Mom is still pretty sharp, although he hasn't seen her in two years. Having recently taken her on a trip, I beg to differ. It really does always fall on the daughter.

    "Blessed are ye, when men shall revile you, and persecute you, and shall say all manner of evil against you falsely, for my sake. Matthew 5:11

    by parsonsbeach on Sat May 05, 2012 at 07:09:59 AM PDT

    •  I saw a show on geriatrics on PBS a few years (7+ / 0-)

      ago that said if you want your children to take care of you, you better have three daughters.  Usually it is a daughter, and only one out of three will do it.

    •  Blessings on your journey. (3+ / 0-)
      Recommended by:
      worldlotus, parsonsbeach, Creosote

      It's a difficult one with the reward of a clear conscience and, if you're lucky, some joyful memories, but a lot of facepalming frustration.

      If you want to reveal her location, or anticipated location, you might get some local advice here. I'm in Southern California if that would be useful.

      I'll be back later to post an addition to the info in the last installment concerning Veteran Aid and Attendance benefits, but it's important to get going on that asap if she's eligible. It's a long process, but worth it if she'll be in assisted living, memory care, private pay nursing home or, in some regions, independent living. Not so much if she's imminently going to be on Medicaid in a skilled nursing facility.

      •  Thank you! (3+ / 0-)
        Recommended by:
        JanL, Creosote, Villanova Rhodes

        We're on the east coast and this is the very beginning of my/our journey. My late dad was wonderful in planning ahead. Sold the house when mom didn't want to and as soon as he bought the condo he began looking into nursing/retirement homes. He truly was an example of not wanting to be a burden and dying on his own terms.

        Mom is very independent, still drives and pays her bills, but has become increasing forgetful and misplacing things. We've looked at a lovely place, where she has friends, but she's just not ready to make the move. This week my goal is to "let her" have me take over her bills and mail. I wrote my first diary recently which explains why I'd like to take over her mail:
        It would be a huge first step if I could accomplish that goal. I've got so much on my plate right now that I am very grateful to everyone here at Kos and these groups which allow sharing and some gentle venting.

        "Blessed are ye, when men shall revile you, and persecute you, and shall say all manner of evil against you falsely, for my sake. Matthew 5:11

        by parsonsbeach on Sat May 05, 2012 at 03:51:04 PM PDT

        [ Parent ]

        •  Uggg.... increasingLY (0+ / 0-)

          "Blessed are ye, when men shall revile you, and persecute you, and shall say all manner of evil against you falsely, for my sake. Matthew 5:11

          by parsonsbeach on Sat May 05, 2012 at 04:00:56 PM PDT

          [ Parent ]

        •  Oy. I hadn't seen your earlier diary. (1+ / 0-)
          Recommended by:

          You do have a situation on your hands. There's a lot of good info that's been posted in this series and in others with the group tag "CareGiving Kos," especially by GreyHawk and HawkWife. You may want to join that group and search for related diaries & references they give.

          I'm going to assume that your mother's problems are not remediable -- that they are age-related deficits or Alzheimer's, etc., and likely to worsen -- but you should be sure to get a medical opinion on that. Things like undiagnosed UTIs, medication conflicts, and depression can cause reversible cognitive problems.

          It's good that you already have found an assisted living place that may suit your needs. (You should also scout nursing homes when you have a chance.) If your commute to the place is going to be burdensome, you'd be wise to try to convince her to move to an appropriate facility in your area once that becomes necessary. Your life is going to be difficult enough without adding a long trip on top of it, unless it is long enough to justify setting boundaries you want to set anyway. If you're going to feel like you're on duty every day, you're within your rights to say that she will move to your area, whether she wants to move to another state or not. If she's heading toward dementia, neither the state nor her current friends will matter. Your mental and physical health matter more.

          If it's going the direction you sense, you will also need to start the process of having "the talk" about driving. I didn't face that one, but if you google something like "senior driving" and "the talk" you will find suggestions. Also, maybe you can convince her to have all the mail rerouted to you if you promise you will bring it all to her and go over it with her. She can continue to pay the bills with you involved (or you can do it for her once she agrees), and you can work with her to go over the obnoxious solicitations, weaning her down to a few pet causes (swallow hard).

          If your plan-ahead dad didn't convince her to put together the appropriate documents (power of attorney, advance directives, etc.), find an attorney -- preferably an experienced elder law attorney, failing that, an estates & trusts atty. If she did these documents but put your helpful brother in charge, you need to get those changed yesterday. The closer she gets to not being mentally competent to execute them, the more difficult it will be. Get with all of her health care and insurance providers to make sure you are either the representative payee (she's probably not there yet) or at least in their records as authorized to give and receive info about your mother. (Often, the appropriate form will be on their websites.) Ditto for banks/credit unions/etc. if she'll allow it. Yes, a power of attorney should work for many of these, but they all want their own very special form used, and it's just easier to go along at this point.

          While you're at it, find and keep safe (1) your dad's original discharge papers or other proof of when he served and the nature of his discharge, (2) their marriage license, and (3) his death certificate. You will need them all for the VA Aid & Attendance benefit application. (You'll also need a physician's report, but there's no sense doing that until she's ready to move into a facility.)

          There are different considerations depending on whether your mother has substantial assets or not. If she does, make sure the attorney knows how to structure her affairs to protect her assets, or can recommend a financial planner to do so. (Note that I am not suggesting fraudulent transfers, hiding assets for the purpose of qualifying for Medicaid, or anything illegal or unethical. I'm talking about making sure her assets are available for her care, not subject to loss, and accessible by you if you're to be her responsible party.)

          If a rapid decline, fall, or illness pushes you to find an assisted living or nursing home placement before you can do adequate planning, DO NOT SELL THE CONDO IF IT IS IN HER NAME. Unless she has a reverse mortgage on it (which would require sale if she is leaving it permanently), or unless she will recover nothing from the sale, you do not want to move on this until you have completed the financial/estate planning process suggested above. Having a condo will not disqualify her for the VA benefit; selling it and taking the money will, if it pushes her assets high enough.

          Your other diary mentioned that your father was a naval officer. Based on your mother's age, I'm guessing he served at least one day during a war era & assuming his discharge was not dishonorable. If your mother does not already receive a pension based on his service, she will probably be able to obtain one if she needs an assisted living environment (or higher level care). If she already receives one, she should be entitled to the higher of the two options. (For the surviving spouse of a veteran, Aid and Attendance is up to $1,094/month, tax-free. In any reasonable AL facility, she would qualify for the maximum assuming her income is not too high.)

          Do not start with the VA, other than to review their website for the basics. You will get a different answer on each call to the VA. Have someone outside the VA determine her likely eligibility before you file. There are good actors and bad actors out there dealing with this and they're not as easily identified as one might expect. Some people who do it pro bono are terrible, and some people in it to benefit from asset structuring can be really excellent. Normally, you should be able to get this done for free unless you need a lawyer -- e.g., to create a trust -- and that shouldn't be too much. The AL facility you already know will probably have a couple of references for you. In some places there are good Veterans Service Offices who can help, but not everywhere. (Check the gov't pages in your phone book -- in my area they are county offices.) They are good if there are relatively few assets (not Medicaid poor but, say, under $40K or so). They are usually not that good if there is more money or equity in a house because they're not in the business of helping people become qualified.

          Do not believe the VA, a VSO, or an assisted living facility that tells you she has too much money to qualify for the benefit. They often do not know what can be done within the regulations to qualify. Get information from your elder law attorney, or kosmail me and I might be able to give you some references.

          It is important to get started quickly because it takes a long time (often 6-9 months) to get the benefit, but the payments are retroactive to the date of filing a complete application. For some people, it can make the difference between being able to afford a decent facility and not, and between being able to stay and going to a nursing home. Note, though, that she will almost certainly have to stop driving in order to obtain the benefit. That's not explicit in the law, but as a matter of practice it is almost always disqualifying. (This may eventually help you in "the talk" I mentioned.)

          If you can convince her to live with you, or to bring in help where she lives now, she may also be eligible for a "housebound" benefit somewhat lower than the figure I mentioned. (She isn't housebound yet, but you're planning ahead.) I'm less familiar with that but could find you some references.

          Your father -- and in her own way your mother -- earned these benefits, and as a taxpayer I am happy to help subsidize them, even if she does listen to Fox News. Unless she is rolling in dough, don't leave them on the table without exploring her options.

          If none of this makes sense now, save it for later. Feel free to kosmail me if you have questions. Good luck to you both.

          •  I can't say thank you enough for your great advice (1+ / 0-)
            Recommended by:
            Villanova Rhodes

            And I can't thank you enough for taking the time that you did trying to help me. You gave me a lot of great ideas! And lastly thank you for inviting me to kosmail you. I will take you up on that. Thank you so much!

            "Blessed are ye, when men shall revile you, and persecute you, and shall say all manner of evil against you falsely, for my sake. Matthew 5:11

            by parsonsbeach on Sun May 06, 2012 at 06:45:30 AM PDT

            [ Parent ]

  •  My sister just went this morning to pick up (8+ / 0-)

    a hospital bed we just bought for my mom.  One of my good friend's mother fell and broke her hip and laid on the floor for three days until someone found her.  He moved in with her and took care of her for the next ten years until she died.  Those buttons can make a difference.

  •  I pity my mom (5+ / 0-)

    She made all 3 of her children not want to be around her or have little to do with her. She was a drunk while raising us, what little she did. We learned to wash our own clothes and cook out own meals by the age of 8 or 9 when we didn't eat pizza 3 or 4 times a week. Even when she finally quit drinking there was never a apology, or even a word at all said about it. Our Skeletons stay in the closet in my family. My 2 sister may talk to each other but none of my family talks with me anymore.
     I made the mistake of trying to repair the relationship that I let my mom come to visit for a couple months every winter, then that turned into her moving into the spare room I rented out to help make the house payment. She didn't think She should have to pay her own way even tho her double State Pensions added up to twice what I made a month. She ended up costing me the th house, my credit,my job, and my relationship with the rest of the family. I also reminded me why I had moved out at 14 to begin with, stupid me. No one every really can go home when that home was only a nightmare instead of the dream.

     With the history our family has of Alzheimers disease she may find it a blessing that won't be able to remember much. I personally plan on going out while my dignity is somewhat intact.

    "the government's role should be to uplift, enlighten, educate and ennoble the citizen, not oppress them with taxation and intrusive laws," Gatewood Galbraith, Historic Marijuana Advocate, aka "The Last Free Man In America," RIP 1-3-12

    by SmileySam on Sat May 05, 2012 at 11:53:36 AM PDT

  •  My mother is in (3+ / 0-)
    Recommended by:
    JanL, Creosote, Villanova Rhodes

    assisted living, and her experience is much different.  We had a number of choices of homes, some absolutely wonderful and expensive, some so dismally bad I still have nightmares about walking through the door.  I found one that is affordable, and reasonably nice.  Most of Mom's incidentals are provided by Medicare or, now, hospice.  Actually the only thing I am ever asked to provide is batteries for her bed and chair alarms (she's fallen so many times I can't count).  Yes, the facility is staffed at the bare minimum allowed by the state, and, to me at least, the food is dreadful.  However, my mother is eating better than she had been eating for years and seems to like the food well enough.  I could eat there when I visit at meal time, but it's not something I'd do voluntarily.  The staff knows my mother is a fall risk and keeps her with them whenever she is awake, while they go about their other duties.  They are very caring, but sadly underpaid and overworked.  However, the work atmosphere is quite pleasant.  I visit my mother every day at meal time and have made friends with all the staff.  I think that is essential.  I also do her laundry, which isn't required.  Her end of life time is very sad, but I think she's contented enough where she is and all in all, I'm satisfied with the facility she's in.

    •  Paradoxically, they are usually pretty (1+ / 0-)
      Recommended by:

      good places to die. If you can't be at home, they're much better than nursing homes, as long as you have sufficient hospice services. You are right -- making friends with the staff and doing as much of their work as you possibly can goes a long way, as does being there often and at irregular times. Best of luck in these difficult days -- you've done the best you can.

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