Thursday, January 5, 2017

Dementia: When is Home Care Not Enough?

For some basics on dementia in general, click here.
If you have a dementia patient in your family, there may come a time when you will be forced to grapple with this question:  Is it time for professional memory care?

My family has been forced to answer this question twice; first with my Dad, and then with his sister.  I've also talked with a number of families at the memory care facility where Dad lived for ten months.  So, if you are facing this situation, the information you'll read below isn't merely theory or supposition.

For purposes of this discussion, I'm going to assume that your loved one isn't currently living alone.  I can't really imagine a loving scenario in which a person who has been diagnosed with dementia is allowed to live by themself.  If your loved one has lived alone up until the point of their dementia diagnosis, they will need to either be moved into the home of a loved one who will become their primary caregiver, or someone will need to move into their home to act as a caregiver.  Remaining alone is not an option.  Dementia is going to demand big, significant changes from people who most love the patient.  And living arrangements constitute a major part of this disruption.

Granted, depending on the degree of dementia being displayed by your loved one, at least in their early stages, perhaps it won't be necessary for them to have 24/7 care.  But that scenario will likely not last very long.  You see, it is not fair for people with dementia to be intentionally left alone when there's a risk that they could wander off, accidentally burn themselves, or otherwise harm themselves or others.  In many cases, it would be akin to leaving a two-year-old alone at home for hours on end - and a caregiver who allowed that to happen would likely be charged with abuse.

So now, you've arrived at the point where keeping your loved one at home is not just a burden, or a sacrifice, but it has devolved into something else.  Something that appears to be demanding from you a level of resources that your body, your brain, and your emotions seem far too taxed to meet.

If you are fortunate enough, and are able to patch together the finances to pay for professional memory care, here is when that care might be timely:

1.  If your loved one consistently displays no recognition of their current surroundings, it may be that placing them in professional memory care will be less distressing and disruptive to them than you think.  Of course, this applies mostly to dementia patients who are currently living in an environment they should otherwise recognize, such as their long-time home (longer than a couple of years), or even perhaps in the home of a relative that they've visited for years.

If they've lived in their current environment for only a couple of years, it's to be expected that they won't readily recognize it.  Remember that a hallmark of dementia is the gradual loss of memory, and that loss is measured from where they are today.  It's called "short-term memory loss."  The shorter the memory, the quicker it's lost.

If they can't remember how to find their way around a home in which they've lived for only five years, or even ten, that may not be as significant as if they can't find their way around the home in which they've lived for thirty years (which is how it was with my Dad).

And, if they keep saying they "want to go home," and they're still at home, chances are they'll keep saying that if they're in a memory care facility.  "Home" to them likely means someplace familiar to them from their childhood, not anyplace they've lived recently.  If they are particularly religious, "home" can also come to mean Heaven, or whatever constitutes eternal reward in their religion.

2.  If your loved one is consistently belligerent or combative to the point of trying to physically fight with a caregiver, it might be safer for you - and for your loved one - to be in a facility where trained staffmembers know how to better avoid things like flying fists or gnashing teeth.  Verbal abuse may be emotionally draining for you and other caregivers, but when the abuse becomes physical, things become far more dangerous because it likely means your loved one no longer can distinguish between proper acts of frustration and baser impulses of aggression.

It's not that professional memory caregivers wear body armor or are incredibly nimble, but they have more experience at recognizing warning signs of aggressive behavior.  They also have the ability to summon assistance quickly - something you probably don't have at home.

3.  If your loved one has lost the ability to talk, or clearly communicate basic needs, then it could be that you miss important signs that they are suffering from something compromising their quality of life.  Most memory care facilities will likely require you to sign a "Do Not Resuscitate" waiver when you place your loved one in their care, so this isn't about extending their life.  But quality of life - however tentative and ambiguous that may be at this point - remains important.  Things like pain and other internal discomforts might be more easily detected and monitored by professional caregivers.  Having different staff members in different shifts working with your loved one also creates a broader base of evaluation and trouble-shooting, another benefit you likely don't have at home.

4.  Most reputable memory care facilities will invite prospective families to visit during mealtimes, so you can see for yourself in real time how the staff interacts with their residents.  The facility where my Mom and I placed Dad encouraged us to share a meal with him as well, but he was actually in the hospital at the time of our exploratory visit.  My point is, however, that if your loved one can eat a meal in the dining room of a memory care facility, and eat their meal along with a room full of other dementia patients, they're a likely candidate for professional care.

Indeed, mealtimes in a memory care facility are not for the faint of heart.  It is quite distressing to watch grown adults struggle to eat, or protest eating, or having to be fed.  If your loved one can tolerate an environment like that, it's a sobering indication to you that the experience won't be as traumatizing for them as you fear it might be.

5.  Some other considerations include the degree to which your loved one tolerates interaction with others.  There were times when it seemed my Dad enjoyed being around other residents in his memory care facility.  A good facility will have coordinated activities and live music that are surprisingly stimulating, yet things you may not be able to regularly provide in your home.  My Dad's place also prioritized getting residents out of their rooms during the day; only the sickest were regularly kept in their rooms.  Carpeting helps minimize excess noisiness, but it also has to be kept clean for sanitary reasons.  If the flooring isn't carpeted, make sure it's not slippery.  There should be no trip hazards, like throw rugs, or furniture with legs or feet that protrude from its undersides.

Speaking of sanitation, make sure there are no trash cans simply left out in the open - dementia patients love rummaging through them, which is a big health hazard.

6.  For some dementia patients, particularly those whose families are struggling with the enormous monthly costs of professional memory care, it may become unnecessary to have actual memory care.  If your loved one becomes exceptionally low-functioning, bedridden, severely detached from their environment, and otherwise incapacitated, a regular nursing home may be able to provide enough care without the expensive memory care pricetag.  If you're fortunate enough to have an elder care specialist as your loved one's physician, your doctor will help you determine if or when you can forgo professional memory care.

Of course, remember that many nursing homes, for whatever reason, still do not provide the type of care to dementia patients that you'd think would be obvious.  A friend of ours had his wife, with full-blown Alzheimer's, in a highly-respected rehabilitation nursing facility after surgery to repair a broken hip, and the nurses there would put a platter of food in front of her - covered by a plastic bowl to keep it warm... yet the woman had no idea food was under the plastic bowl.  They'd give her a cup of yogurt or pudding as a snack, and not remove the aluminum foil top.  They'd even give her a plastic cup with a beverage inside, a plastic cap on top, and a straw, yet the woman didn't know how to drink from a straw.  At her memory care facility, none of those things ever happened, because the memory care staff knew what dementia patients can't comprehend.

7.  If and when you visit professional memory care facilities, ask whatever questions you have.  This is a big deal, so don't be embarrassed by treating it like one.  If you feel rushed by the staff, or if you get the sense they are being evasive, let those be red flags for you.

When you're walking the halls on your facility tour, does your host acknowledge residents and employees by name?  Does the place employ at least one full-time nurse?  Ask if any local hospice companies are on a black list of theirs - a memory care facility that is zealous about their residents' health likely will prefer some hospice companies over others.

Visiting during a mealtime won't be comfortable for you, but it will be an eye-opener, and you need raw honesty, not sugar-coated platitudes.  If the place smells, feel free to ask why.  Don't necessarily assume it always smells like that, because bodily function incidents happen constantly in these types of facilities.  But if every hallway smells, and the furniture smells, and the smell is more of a stench, those aren't good signs.

Look for how well exit doors are locked and marked.  Is there a fence around the property?  What is the front door protocol?  Is there a staff member stationed nearby to prevent a resident's "escape"?  Are there security cameras?  Dementia patients tend to fall a lot, as their sense of balance is lost; do they archive videos for family members to review after an incident?

I'm not sure what a good resident/staff ratio is, but at Dad's place, I believe it was 10:1, not counting office and kitchen staff, and that seemed adequate.  They aimed to give each resident three showers a week, but with people like Dad, who could be quite belligerent at shower time, Mom and I were satisfied if they could get him in for two! 

Whatever your family is able to decide, please understand that you will likely feel some degree of guilt.  That seems pretty normal and unavoidable among all the families I know who've placed loved ones in memory care.  These are stressful decisions that not only drain you financially, but also emotionally.  All I hope to do with this information is help you in the decision-making process, and perhaps give you some things to consider that maybe hadn't already dawned on you.

Hopefully, someday, perhaps before you or I get to be the age of our loved ones with dementia, a cure will be found, and our families won't have to go through what we are.  Until then, however, like one nurse told us, "you've gotta do what you've gotta do" when it comes to loved ones whose minds are being stolen by dementia.

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