Saturday, May 31, 2008

Should My Relative Move into an Assisted Living Facility?

First, what’s great about assisted living?

Assisted living is NOT nursing home care! Most people get a horrified expression on their faces when I suggest they look into assisted living for their relatives but I’ve met many other people who happily have chosen this option for themselves to retain their independence and enjoyment of living longer. Assisted living communities can be a great source of new friendships. Most of them offer activities that beat sitting by yourself in front of the television any day. Some provide transportation to things people want to do and all of them provide meal preparation, housecleaning assistance and personal care services that would otherwise be hard to manage. Assisted living frees family members from the burden of juggling caregiving with dual careers and child-rearing. It can give an overstressed spouse a chance to rest at night and can even be used, in some cases, for a week to a month of respite for those caregivers intent on mostly caring for a loved one at home.

What’s not great about assisted living?

It’s expensive. $3000-$6000/month is not unusual in this area. MediCal and Medicare do not cover assisted living and neither do many long-term care insurance policies. (Be sure to read the fine print!) However, the reality is that 24 hour in-home care is much more expensive and, when a person is willing to move, there is often a house that can then be sold to pay for services. Unfortunately, for many families the choice to use either facility care or extensive in-home services is, financially, out of the question.

Also, change, by it’s very nature, is disruptive and stressful. Moving into a new home can be especially traumatic for people who have lived in one place many years and have their whole identities wrapped up in their home environments. Dementia patients almost always go through a period of increased disorientation when they move. If they are prone to having catastrophic reactions, these displays of intense emotion are much more likely to occur in the wake of a move and caregivers who don’t expect this can be wracked with anguish and grief. Even healthy people go through incredible grief and loss at the reality of dismantling a beloved home and trying to reduce a household of belongings into what will fit in a 1-2 room apartment. New routines, diminished expectations, and being surrounded by a sea of unfamiliar wrinkled faces can bring thoughts and fears about one’s own age and mortality into sharper focus. If part of one’s belief system includes a fear of dying alone among strangers, it can feel as if one’s worst nightmares have come true.

None of these are reasons not to choose assisted living and not all people have reactions even close to this. The earlier in the course of the disease such a choice is made, the better in terms of ease of adjustment. In fact, many of my clients have been pleasantly surprised by how well their loved one adjusted to their new homes and how easily they made new friends. Some people positively thrive and come back to life. Still, it is foolish to ignore the downside. I hear just as many stories about people who gave up on living as soon as they left home and died.

So how is an exhausted caregiver supposed to make such a difficult decision?

You need to address the worries and needs of the care receiver as much as possible while doing what has to be done for your own physical health and mental well-being. Nobody benefits when a caregiver dies or goes into physical decline as a result of trying to do too much. Then there are two patients instead of one and the care receiver almost always winds up in a facility anyway—only instead of having the support their dearest loved one would have provided, they have none.

If using an assisted living facility is something the family is willing to consider, start visiting them early. Educate yourself on who provides the services and environment you prefer in a price range you can consider. Make peace with not leaving your children an inheritance or, if it’s not too late, get a long term care insurance policy that covers assisted living care.

Choose to focus on the positives when you introduce the concept of assisted living to your relative and the rest of the family. Bring the care receiver for a visit during lunch or at a time when an activity they might enjoy is planned. If you have friends or family who deliberately chose this arrangement for their retirement take advantage of their help and positive mental attitude by visiting or talking with them by phone. Alternatively, ask the facility if they have any happy residents who might be willing to chat with you. Find out why they like it and how they made their decision. Knowing others who are having a positive experience goes a long way towards dispelling many of the fears you and your family members may be carrying.

Also, understand that using facility care does not mean giving up on providing your own loving care. Reject the stereotype of the heartless relative who dumps their patient in a rest home and forgets about them. Families can still maintain a loving connection even when a demented loved one lives in a separate place. I know caregivers who pick up their patients every day to go for a drive, go out for ice cream, take in a movie or go for a walk and report that their relationships are sweeter because they can focus on love and creating pleasant experiences instead of on how to survive the stress of not getting enough sleep and providing constant supervision. The care facility provides the much needed hands-on care and respite so the caregiver is free to be a daughter, son, spouse or friend again.

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