Senior Housing

Be an advocate for your aging loved one.

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If your loved one no longer has a voice in which to defend or advocate for herself, who better to do so than you?

In this post I will assume that your loved one, e.g., parent, grandparent, spouse, or sibling, lives in a long-term care (LTC) facility.  Oftentimes by the time our parent has entered a facility, we are so relieved that someone else has taken over the caregiving, we willingly take a back seat and let the professionals do their job.  By all means, reward yourself with the freedom that less active caregiving of your loved one has afforded you, but don’t leave your caregiving role behind.

I know it’s hard to hear what I’m about to say – especially since you finally turned over your parent’s caregiving to someone else – but I want to encourage you to NOT assume that the care being provided (or withheld) is in your loved one’s best interests.  It’s easy to have a perhaps unwarranted laid-back attitude because:

  1. mom is being taken care of by trained professionals who wouldn’t be doing this job if they didn’t love it; and/or
  2. mom is living in a ritzy/expensive place so it must be the best option for her; and/or
  3. this place couldn’t possibly have any problems as witnessed by the waiting list we had to climb to get her accepted.

I wish all of the above points were reason enough to become somewhat removed from the picture but the truth of the matter is that none of the above have any bearing on the quality of care being provided to your mom.  Let’s take each point separately.

  1. Without a doubt, there are caregivers and management staff that truly do love what they do and this attitude is demonstrated in the compassionate way in which they care for your loved one.  However, in 2007, studies showed that staff turnover rates ranged from 50 percent to well over 300 percent a year!  There’s a reason why caregiver turnover is so high.  This job is TOUGH and the pay is unconscionably low.  A 2004 U.S. Dept. of Health and Human Services report addresses the front line long-term care workforce challenges which have only increased in the past several years.  This report is worth your while to read.  Learning is power – right?
  2. Champagne and chandelier facilities are just that – beautiful buildings on their face, but not necessarily representative of the care being provided.  Don’t get me wrong, I’m aware that stellar higher-end senior housing companies exit, but it’s important that we not be lulled into thinking that glitz equals great.   Sometimes what I call “generic” buildings oftentimes provide as good or better care.
  3. The waiting lists that so frequently exist for LTC facilities – especially for dementia care – are representative of the demand for space that, as of 2011, is not adequate for the burgeoning influx of Baby Boomers needing care.  So a waiting list does not necessarily represent quality.

So here are some pointers for you that I hope encourage your continued involvement in your loved one’s care.

SPEAK UP.  You don’t have to be a squeaky wheel to get the grease.

  • Be persistent yet respectful.
  • Take the time to be a part of your loved one’s care meetings/conferences with staff to discern their reasons for the care being provided.
  • Be present: in person if you live nearby or by phone if you are a long distance family caregiver.  Trust me, if the caregivers know that you care and are going to be an active family participant, you’ll get their attention, and so will your loved one.

OBSERVE.  When visiting your loved one, observe her behavior and demeanor; her cleanliness and her appearance.  How does it differ from visit to visit?  Is her room tidy, clean and uncluttered?  One way to observe staff members in action is to accompany your mom on facility outings.  Observe the staff’s interaction with the residents.  Do they speak respectfully to them?  Are they patient with them?  Do the residents enjoy their outings or do you get the impression that these outings are forced upon them?  All of these impressions are important towards discerning what goes on in your absence.

ADVOCACY RESOURCES.  Do your part in acquiring the tools needed to better understand the resident rights guaranteed by law that your loved one should be receiving as a long-term care facility resident.  Each state in this country has a LTC Ombudsman program.  Get acquainted with their mission of advocating on behalf of vulnerable adults and contact your local program to receive help in assuring optimal care for your loved one.

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Caregiver Guilt

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Do you feel as though you don’t visit your loved one often enough at the long-term care (LTC) facility in which they live? Try to acknowledge that guilt is a feeling that may not necessarily reflect an accurate reality of how attentive you are towards your loved one.

The local caregiver.

Many people have expressed their concerns to me that they’re just not doing enough for their loved one who lives in a LTC facility. Even when a caregiver visits Mom several days a week, the caregiver still feels guilty for not making more of an effort to be there for her.

Guilt is a valid feeling – I believe all feelings are valid – but the feeling of guilt may not accurately reflect what is going on. Let’s face it, most of us are hard on ourselves. The old adage, “we’re our own worse critic” came about resultant from generations of people who unfairly beat themselves into the ground.

At a recent gathering I attended, a woman expressed how guilty she felt for not visiting her mother more often than she thought appropriate. Another person, also a caregiver, suggested that this person ask herself whether or not she felt she was doing the best she could in this situation. “If you are, then perhaps your feeling of guilt is based on emotion rather than reality.” Whether five visits a week or one visit a month – if that’s the best a person is able to do, then it’s sufficient.

Some of us caregivers simply need to cut ourselves some slack. Even when the loved one we’re visiting has no concept of the passage of time and is not able to discern whether they’ve been visited as recently as the last hour or as long ago as last year, we still berate ourselves for not being there more frequently.

Caveat: I need to add that even if your loved one doesn’t a) recognize you, and b) can’t quantify the passage of time, you are still a wonderful addition to that person’s life.  No staff caregiver can take your place when it comes to providing a loving presence for your Mom who lives in a facility. Just being there with a smile, a hug, and speaking words of compassion can do wonders towards brightening Mom’s day.

The long-distance caregiver.

One of many walks my father and I took around his facility

My biggest role as a caregiver was that which I performed long distance for my father who lived in a dementia unit in a Southern Oregon assisted living facility. I felt like I was doing something truly valuable for him while I was there but as soon as I boarded the plane for Seattle the guilt enveloped me. Usually, the first night of my return was spent crying because I felt I had been impatient with him, or I acted flustered when I had to answer a question that my father had already asked me no less than two dozen times prior. I relived every moment of my visit, criticizing this and that about what I did, or didn’t do. I was a wreck. I had to talk myself into believing that dad did have a good time and dad was genuinely happy to see me, and by golly, I didn’t do that bad of a job as a caregiver daughter.

I could then relax knowing that he was being well-cared for in my absence; my visits augmented that care, and I could rest on that fact rather than falling back on my guilt. The NY Times article, Being There and Far Away sheds some light on the long distance caregiver’s experience.  I hope you’ll take the time to read the article as I believe it will touch on some topics that all caregivers may experience.

As I mentioned in my Blog entry, Deathbed Promises and How to Fulfill Them take a deep breath and shed the mantle of guilt you’re wearing. It doesn’t do you any good and it gets in the way of you being the best caregiver you can be.  Cut yourself some slack and don’t be so hard on yourself.

Do your best – that’s all that is required.

Avoiding the pitfalls of selecting Senior Housing.

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You’re patting yourself on the back, congratulating yourself for:

  • finally deciding that it’s time to move into Senior Housing; and
  • deciding which type of long-term care (LTC) option suits your needs.

Now what?  You’re scared to death because of the abhorrent negative press you’ve read regarding certain types of Senior Housing.  Good for you – you should be!  There are ways to make your selection a more trustworthy one.  What follows will hopefully weed out the bad eggs, but there is absolutely NO guarantee the decision you make is 100% sure.

WORD OF MOUTH

Chances are that those similar to you in age – your friends, work associates, neighbors – have looked into or are currently looking into Senior housing options and they can be a very worthwhile resource.  Don’t be afraid to ask them to share their experiences with you and you’ll certainly do the same with others as their needs become known to you.  Better yet – if you know of someone who already lives in a LTC facility, visit them to discern what they think about their own choice.

HOUSING SEARCH RESOURCES 

Where will your path take you?
  • Check out your state’s Aging & Disability Services Administration department (linked here is Washington State’s ADSA.)  You really can’t go wrong checking out your State’s services for the Senior population.  These resources usually have links to long-term care facility research tools, such as the Assisted Living section of my local state’s ADSA.  No doubt your State’s Aging & Disability department will have similar links.  If you’re looking for retirement communities that involve totally independent living, or a Continuing Care Retirement Community (CCRC), an all-care type of residential model mentioned in my previous blog “Selecting a Senior Housing Community”, your search will be less informational because most States do not license retirement communities.
  • STATE INSPECTION SURVEY.  All licensed facilities in the United States are inspected/surveyed every 12 – 18 months.  This survey is quite thorough and covers absolutely EVERY aspect of a facility’s operations.  When you tour a facility, always ask to look at a copy of that building’s latest State Survey.  By law they must make it available to anyone who asks.  I don’t think I would ever consider a Senior housing option without reading the building’s State Survey.  You’ll find minor or major citations which will be very telling as to how the building is run and how the Administration or Owner of the building responds to such citations.

LONG-TERM CARE OMBUDSMAN PROGRAM (LTCOP)

Every state must have a long-term care ombudsman program in place.  These programs are mandated by the Federal Older Americans Act and are intended to improve the quality of life for people who live in long-term care facilities.  A call to the LTCOP intake line in your state is a call worth making.  Let’s say you’ve narrowed down your housing search to a few options.  You ask the LTC Ombudsman’s office about the types of complaints that have been filed against those facilities and this office will provide worthwhile information to help you make your housing decisions.  The National Long-Term Care Ombudsman Center  will help you locate your local LTC Ombudsman program.

SENIOR HOUSING LOCATORS

You’ll notice that I’ve placed this type of resource at the bottom of my list.  There are numerous housing “finders” out there and they can certainly be helpful.  You tell them what you’re looking for; what area of town you prefer; what type of care you need; and what you’re willing to pay; and they’ll come up with some options for you.  Please keep in mind, however, that these senior housing finders have an inventory of housing clients that may or may not be representative of all that is out there.  They may come up with some very good options for you but their list will most likely not be an exhaustive one.

Regardless of what/who you use to locate a LTC facility, I hope you’ll go through the previous options I’ve listed above to discern the appropriateness of any facility you’re considering.  Perhaps a Senior Housing Locator has provided what appear to be some great options for you and you’ve even toured them and feel comfortable with what is offered.  Prior to making your final selection, at the very least go through your State’s Long Term Care Ombudsman to discern whether or not any recent actions or citations have been placed against that facility.  And when touring any housing location, be certain to ask for the facility’s latest State Inspection Survey so you can see what the State thinks about that facility.

My father & I on a picnic a year before he died.

Selecting a Senior housing community – easy for some, not for the rest of us.

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Even if you think you will never move into a Senior housing facility you should at least do some research so that in an emergent situation, you’ll be well-enough informed to start moving forward with a plan.  This is not the time to be making snap decisions.  Your well-being, or that of a loved one, deserves more attention than that.  Making an advanced decision, and thinking ahead regarding future living circumstances, will afford you the opportunity to make a decision that you want, not what others have decided for you.  What follows may be too basic for those who are already familiar with Senior housing options, but for many, this blog entry will serve as a first step primer towards getting ones’ feet wet.

INDEPENDENT LIVING – sometimes called After 55 Housing.

These complexes are designed for adults who want an independent lifestyle in which they can relinquish yardwork and house maintenance tasks to someone else.  Now you’re talking!  If the independent complex has a common dining room they will either provide meals in a restaurant setting (ordering off the menu) and/or buffet-style selections.  Depending upon the particular independent community you’re considering, other amenities such as housekeeping, transportation and on and off-site activities may also be available to its residents.  It’s important to know that although these communities may offer wellness programs in which you can become involved, e.g. exercise or nutrition classes, there are typically no care options offered unless the community is licensed as a residential care facility for the elderly.

ASSISTED LIVING.

This category of facility promotes independence while also offering personal assistance for specific care needs such as bathing & toileting, dressing, walking assistance, and/or medication assistance.  These needs are called Activities of Daily Living (ADLs).  Assisted living communities may be a stand-alone building or an extension of an independent residential community.  If an assisted living facility is also licensed to provide dementia/memory care, a resident could readily move from general assisted living care to dementia care in the same facility.

GROUP HOME/ADULT FAMILY HOME (AFH)

An Adult Family Home is typically a single family home with a State-imposed maximum allowable number of residents – in Washington State, this number is six.  These residences offer assistance with ADLs.  This is a desirable option for those looking for a residential situation that is more home-like than facility-like.  Many adult family homes also provide specialized care for those with dementia.

ALZHEIMER’S/DEMENTIA CARE.

These facilities provide all the expected assisted living services plus specialized services that meet the needs of the memory impaired adult and is usually always a secured unit to protect a resident who might be a wandering risk.  By secured, I mean that in order to exit to a public hallway or common area, such as a lobby, a person would need to punch a code into a keypad that one with dementia would most likely not be able to navigate.  A secure dementia care unit can exist as a stand-alone building or can be found within an assisted living complex, a nursing home complex, or a continuing care retirement community.

NURSING HOME/SKILLED NURSING FACILITY/REHABILITATION FACILITY.

This facility provides 24-hour medical care on a short-term or long-term basis.  Additionally, rehabilitation programs are offered.  If someone living in an assisted living community has orthopedic surgery, he would probably undergo a certain amount of rehabilitation at a nursing home and then return to his previous residential situation.  A nursing home can sometimes become a permanent care option for those requiring a higher level of care.  Since assisted living and dementia care facilities have certain limits on the level of care they can provide, a nursing home may be necessary in order to receive the advanced care needed by a resident.

CONTINUING CARE RETIREMENT COMMUNITY (CCRC)

A CCRC has all levels of Senior living – therefore it’s usually quite expensive: independent, assisted, dementia care and nursing home care.  The benefit of a Continuing Care Retirement Community is that you can age in place regardless of your growing medical or cognitive needs.  This type of community exists on a larger campus that truly does provide an entire spectrum of care.  You can move into a CCRC totally independent – without any care needs whatsoever – and gradually move through the campus property without leaving your friends and without greatly changing your surroundings, thus assuring a continuum of experience for many years to come.

Housing for Seniors is addressed in the attached Federal Seniors Resource website that provides an extensive list of pertinent resources.  I hope you’ll find it helpful – not just for senior housing information but for many topics about which you may have an interest.

My wonderful dad and I taking a stroll in 2006.

What challenges have you faced – or what concerns do you have about either your future or the future of a loved one who might need Senior housing?  Let’s talk about it – let us hope that what each of us contributes benefits those tuning into this blog.