Your Job is Done...NOT!

What happens when your loved one enters a residential care facility? Your job is done, right? NOT. Your job has changed, but it is far from done. When you are the full time caregiver at home, you are responsible for it all, the physical care, the emotional support, and the coordination of all the services your loved one needs.

When your loved one enters a care facility, your job is still very important. Yes, you have given up the physical care, but that is something any well trained person can provide. Only you can provide the emotional care your loved one needs. You are still the most important person in their life. You are their link with all that is safe and familiar to them. You provide loving, non-work-related words and touching, which the care staff has neither the time nor the ability to provide. One woman said it this way: “I get to be a wife again! Before, I was so bogged down with physical care, I felt like a nurse, not a wife.” And don’t discount just sitting and visiting. Socialization, which is as important as exercise, is something else that care staff have little time for.

Likely you’ve already been coordinating doctor’s visits, physical therapy, haircuts, and other services. This doesn’t quit. In fact, it may be even more difficult to do with you in one place and your loved one in another. You’ve probably been your loved one’s advocate for a long time too, especially if verbal skills are slipping. This too may increase. You are a great source of information for the care staff. You are the one who knows that your loved one hates green beans but loves baked beans, that they have ticklish feet, that too much sun always makes them break out in a rash, or that a certain medication makes them very agitated, etc. You’ve probably been social director for a long time too, encouraging family and friends to visit, but watching to make sure that they didn’t come too many at a time or stay too long, something else where only the place changes.

Finally, it has been shown over and over that a residential patient who has a regular visitor gets better care. The staff spends more time with a patient whose family caregiver is regularly present. It isn’t about trying to please you, or show off, or even that you are keeping a critical eye on them. It is simply human nature! In addition, even though you are no longer doing the physical stuff, there is still a lot you can do…get a glass of water, plump up a pillow, walk in the hall with your loved one, etc. things that the staff would have to do if you weren’t there…some of which likely just wouldn’t get done.

And so, no, your job isn’t over; it’s simply changed. However, even if you realize this, it may not be an easy transition. Next week the blog will be about the emotional trauma that caregivers feel as their job changes from physical to emotional care giving.

For information about Lewy body disorders, read our books:

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia

Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.

Adjusting to Residential Care

Last week we talked about entering residential care. This week, the blog is about the adjustment period. Banner Alzheimer's Institute, in Phoenix AZ offers a handout that says it better than I could:

The vast majority of people with dementia have difficulty adjusting to a new home environment. For at least two weeks the person can't find things, is besieged with new people and routines and has feelings of frustration and/or anger. Here are some suggestions for helping a loved one adjust:

Visit often, even if the facility discourages this. Make the visits BRIEF. 10-15 minutes are enough for you to know your loved one is well-cared for and to give them reassurance. A 3-hour visit is going to cause agitation.

If the loved one demands to be taken home, DON'T try to explain. Look at your watch and say, "I have to go now." It will break your heart, but will minimize the behavior after a few times. Many patients start the "take me home" pleas after a 30 minute visit when they get tired. Take it as an indication that it is time to go.

Expect the person to be agitated and angry, but stop beating yourself up about it. You did what had to be done. Your loved one needs to grieve. To expect happiness is unrealistic.

Take something to do. Do their nails or give them a hand or foot massage, have a snack, listen to a new piece of music or share an activity. Once you are done, it is time to go. Have the staff divert your loved one to an activity such as a meal.

Call before you come so you know what kind of day your loved one is having. If you know they are agitated and having a bad day and if you don't think you can face it without becoming upset, don't go. Wait until later, when they are not so agitated. Agitation is contagious and your poor response will just make their already difficult mood worse.

Talk with the staff. Smile. Find the staff doing something right and complement at least one on each visit. There is nothing worse than the family who comes in with their microscope looking for flaws. They will become apparent soon enough -- we are talking about working with demented adults here. Know that the facility and staff have no magic for dealing with behavior problems. If it was difficult to manage at home, it will be worse in the care facility -- especially with 7+ other people who are also demented.

Before you leave, talk with an administrative staff member to see how things are going and what you (as a team) can do to improve care throughout the adjustment.

DO select an activity-based program! (It keeps residents alert longer.) If your loved one is not a socializer, ask the staff to let him have daily alone time, and introduce him more slowly to the group.

Last, do not let the adjustment period dissuade you from the placement. It most likely will work out.

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia

Managing Cognitive Issues in Parkinson’s & Other Lewy Body Disorders

Moving into Residential Care

Last week we talked about the caregivers and their issues with the move of a loved one from home care to residential care. This week is about the loved ones. The decision has been made. Your loved one is no longer safe at home, for whatever reason. This process can be wrenching for both of you, even when it is voluntary. How do you get your loved one into the new home with the least amount of stress? Ideally, this process started with the first diagnosis of dementia.

Talk about it early. Talk about the possibility of such a move while there is still reasoning ability. Jan and Peter talked first about the possibility of residential care right after his diagnosis. He begged her to "never put him away." Jan knew she couldn't promise this. Instead, she told him, "I will keep you as long as it is safe for both of us." You don't want to make promises you can't keep!

Cry. Likely, you are as upset as your loved one is about the idea. Go ahead and cry. Jan said, "When I cried, it gave Peter permission to cry too. It really made us feel close to grieve this together." Crying is an emotional response. Much more than talking, it will bring you together and let him know you aren't deserting him. A warning: like the talking, crying should be done well in advance of the move. It is too stressful at moving time.

Chose something close. Sue finally found a facility that worked for her mother-in-law. It was an hour away. Now, Sue finds this a great drawback. Not only does she spend far too much time on the road, she can't visit as often as she could otherwise. Norma finally settled for a place that was only five miles from her home. "It isn't as nice as some of the others," Norma explained. "And it is more expensive than some of them too, but it's close enough I can visit a couple of times a day and still have lots of time for myself. And I think I probably save a enough on gas to make up for most of the extra cost.

Consider Adult Day Care. Larry took his wife, Eve, to the Adult Day Care program that their chosen facility offered. It gave him some respite and allowed Eve to get acquainted with the place. When the next step came, and she moved into Assisted Living, both of them were more comfortable with the idea.

Just do it. Nancy wanted to involve Bill in his move. "We've always done these things together," she explained. Her support group discouraged her. "Bill will just worry and fret," they warned. The group is right. Moving involves major change. For someone with dementia, even voluntary change leads to anxiety, which increases LBD symptoms like hallucinations and delusions--and acting out behavior.

To avoid these issues, Nancy needs to keep the time up to moving day as calm and uneventful as possible. This means not telling Bill when he is moving. If it isn't talked about in the last day or so, he will likely forget any earlier conversations. Nancy can pack up and bring Bill's belongings to him after she has delivered him to his new home.

This may sound unfair, but the rules have changed. Dementia decreases the ability to understand cause and effect. Likely, Bill can no longer understand why he must move. There's also the fear of abandonment.Thus, not letting Bill know about the move is like the therapeutic fib: when it is done for his good and to avoid damaging stress, it is therapeutic.

Use a little medicine.  Matthew's doctor suggested that he take a small dose of Seroquel, starting a few days before his move and lasting a week or so afterwards, while he was getting situated. . Dorothy reported that it really helped to smooth the way for the move. "Matthew wasn't nearly so upset as I was afraid he'd be," she said. Even for the family who avoids drugs as much as possible, there are times when they can be very useful and this is one of them!

Next week will be about the first weeks in residential care.

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson’s & Other Lewy Body Disorders