The Whitworths of Arizona, bringing science to you in everyday language.

Saturday, May 17, 2014

Surviving in Long Term Care

You’ve done your homework. You searched out the very best long term care facility you could find for you loved one. And now he’s there and you aren’t happy. You still think it was the best one you could find. The staff is for the most part caring and thoughtful, if overworked. They know their job. But still, it’s not the same. They do things on their schedule and in their way, not yours. Even in a great facility, there will be problems. It’s never going to be like it was at home. Here are some ways to adapt and make this time more enjoyable.
  • Visit about the same time each day. Within this structure, occasionally come an hour early or stay an hour late, or even pop in for a little while at an odd time. Your loved one will do better with a set routine but staff does better when they don’t know when you may show up.
  • Develop new routines, with activities that both of you enjoy. Your job has changed but it hasn’t gotten any less important. The LTC has become responsible for meeting your loved one physical needs. Your job now is to help your loved one meet emotional, social and intellectual needs. You will find you have more time and energy to do this now too. You can take the time to work a puzzle or read or look at photos or reminisce instead of feeling overwhelmed by the physical chores.
  • Develop rapport with staff. Be more generous with your complements than you are with your complaints. (Remember the 3 positives for every negative rule—it applies to staff too!) Bring gifts. Bribes are often as effective with staff as they are with your loved one!
  • Look for the positives. Why did you choose this facility in the first place? Was it close to home? Did you like the staff? Does it feel comfortable? Do these things still apply? What else can you identify that you like about it? Don’t forget to include things like you are getting more rest, more “me time,” and that your back isn’t hurting from all the lifting.
  • Identify the negatives. Yes, they will be there. Routines that you’ve developed won’t work in LTC. And the LTC will have their own routines that may feel uncomfortable and foreign to you and your loved one. Be willing to speak up and make suggestions or requests when necessary. 
  • Adapt. The negatives most likely aren’t going to go away. And so, how can you adapt? This doesn’t mean giving in. It means finding a way so that both your needs and the LTC’s needs are met. For instance, staff turnover is a big complaint. Even when the staff in the facility stays the same, they usually rotate a lot. “I just get someone trained about what Dad likes and they are gone and I have to start all over.” Try writing up a list of things that need to be done and how your loved one wants them done. Then share it with the charge nurse and make sure each new staff is told about it. Most rooms have a dry erase board and you can leave a note about your list on it. Or even write the most important things right there.
  • Let go. Part of adapting is accepting that you aren’t in charge of everything anymore. One of the few perks of caregiving is being in control. It is seldom something you wanted, but when you have to give it up, it can be awfully difficult to do. Take time to consciously evaluate when you want step in and make changes in your loved one’s care. If it is something that really needs changing, go ahead. If it is just because “that’s not the way we do it,” reconsider. Relax and give this new way a chance. While familiarity is important to your loved one, he also needs peace. When you are upset, so is he.
Read A Caregiver's Guide to Lewy Body Dementia, available at, for more suggestions about caregiving.

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