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Change is difficult. Change is difficult for everyone.  Change is more difficult for someone with Dementia.  It’s hard to adjust to something new if everything is new to you and you are unsure about what has gone before.  This makes it more difficult for caregivers who feel the pain of change themselves and then postpone the inevitable, sometimes until it is no longer feasible.

Part of planning for the future when you are a caregiver is figuring out what “criteria” or change in the daily status quo will mean moving to the next step of the process, the next level of care.  That next level of care may mean finding more help to support you in your current home situation or it may mean moving to a residential, assisted living or personal care setting.  Thinking about this ahead of time can help you move ahead at the best time for both you and your loved one.

Some things that I have seen trigger  the need for changes to be made by family caregivers are:

  • Wandering
  • Incontinence
  • Inability to walk
  • A hospital stay by either the person with dementia or their caregiver
  • Behaviors that interfere with safety of either the person with dementia or their caregiver

Think about what your capabilities and boundaries are.

  • When does the need of the person you are caring for interfere with your own health?
  • When does your inability to care for them because of your own physical limitations, their physical or behavioral limitations, or their increasing care needs point to a need for something more?

Take some practical steps

  1. Do some research – (Start by asking friends and family if they are familiar with any of these providers word of mouth and the personal experience of others is often your best measure of an organization’s services)
    • Contact facilities and see what you can afford and who can provide what you anticipate needing in the future – you may need to fill out an application and provide financial information to solidify your decision even if you anticipate waiting a while before pursuing this option
    • Contact Agencies that provide in home care and find out what that would cost and whether there are things you need to know about initiating that care.  Do they only enroll new clients on weekdays?  What happens if you have a crisis on the weekend?
    • Contact Adult Day Facilities – this is a good stop gap measure.  Often having your loved one go to a day program gives them meaning and purpose as well as giving you a break.  There are often added services like bathing/showering, meals, medication administration etc.,that can occur at these places too.
  2. When you figure out your preferred plan write down.  Include contact names and phone numbers.
  3. Contact your/their POA and let them know what your plans are for your loved one if something should happen to you.  Provide them with a copy of your preferred plan.
  4. Share your plan with the person or persons next in line to care for your loved one if you are not available. This is not always the same person as the POA.  If you have a private caregiver coming to care for your loved one they need to know who to contact if something should happen.

While working in a CCRC I saw caregivers postpone a move to a higher level of care thinking that was best for their loved one.  Sometimes it was unclear to me who they were holding out for,the person with dementia or themselves.  I do know there were multiple times where individuals completely skipped over a level of care because they no longer met the criteria.  This was most frequent with couples who were in Residential Living where the spouse was the caregiver though it did occur with adult children caregivers who were still afraid of their parents.  Fear of the anger of the person with Dementia if they were moved, fear of loneliness and being alone, fear of earlier financial need because of the cost of the next higher level of care were all factors in this postponement.  Many individuals skipped right over the Personal Care setting and went straight to Healthcare which was a more appropriate setting for them.  The struggles as they continued to try and function in a setting that did not provide the supports they needed accelerated their progression and sent them to this higher level of care faster.

Plan ahead for transitions – it will save you both unnecessary stress.

Click on the link below for a free printable worksheet

Future Planning Worksheet


“We have to make decisions,

and we can’t make them if they’re based on fear.” 

 Madeleine L’Engle


Next time….Making the actual transition

Transitions in Dementia Part 1
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