Is it time?(1)

OutsideLookingIn

Does anyone know of any kind of checklist or guidelines for considering whether a person "qualifies" for memory care?  Since I am truly on the outside looking in, I am trying to help my LO's primary caregiver with this decision.  I feel inadequate in doing so, mainly because I believe (from what has been said on here in the past) that it is time or past time to do so.  But I need something concrete so that the caregiver can feel like they are making the decision -- after all, it isn't mine to make as I don't know the 24/7 of living with it.  Any articles or brochures would be very helpful.  Thanks for being there for all of us.

OLI

harshedbuzz

OLI-

IME, there are basically 2 sets of standards that apply when trying to decide if a PWD "qualifies" for MC.

There are those set by which ever facility into which you are hoping to get admission. They'll be breaking it down to level of care which is appropriate- AL, MCF, or SNF. Often family hopes for AL- the decor is typically nicer, it's cheaper and the other residents are not end stage PWD. But generally by that time, the LO has slipped to a level where they aren't self-initiating to the degree they can get where they need to be without a physical prompt and will likely be disincluded at meals and activities by the other residents. Many savvy ALs that also have MC, will accept the resident with the unspoken plan to allow the family to see for themselves that the level isn't appropriate and ask to transfer the PWD to MC in a month or two. 

Many MCF, even those who allow residents to "age in place" (which is a lovely way of saying "die here"), will expect a certain degree of ambulation and self-feeding to be included. They'll expect their residents to enter able to walk or use a wheelchair independently and to eat their meals independently. More care than that generally means a SNF or hiring private pay aides to supplement the ones employed by the facility.

The other set of criteria are more focused on the quality and cost of caregiving. To a large degree it's more about the caregiver than the PWD. Is the CG able to get respite regularly? Is the CG fit for the physical parts of caregiving- bathing, lifting, incontinence care? Is the PWD mostly cooperative around eating, hygiene and medication or is everything a battle? Is the CG mostly able to get enough uninterrupted sleep to protect their own health and mood? It's these factors that most often drive the decision that the time has come for placement. 

In my family, my mom really, really wanted to care for dad at home until the end. She was motivated by the high cost of care (Dad had lost $350K of their nest egg day trading early in the disease) as well as meeting the societal expectation that women step up "in sickness and in health". What helped convince her were a number of things-

the nature of one of dad's dementias was that it was kind of self-inflicted

the reality that he would never even contemplate care at home were the roles reversed

and my pleas that caregiving was going to rob me (her DD) of both my parents. (I also told her that if she died, he would be in a SNF where he'd done rehab as they would accept him on the fly in time for dinner)

At the end of the day, I think what my CG-mom needed more than anything was permission. I focused on the great job she'd done for almost 10 years and presented the placement as a trial-run respite that she could make permanent or not.

In the end, I wish I had pushed hard and sooner. I was at their house helping a great deal, but I didn't know that my mom was struggling emotionally and wasn't looking out for her own health. A few meds were not renewed and weeks after dad's death she ended up with one set of medical crises and two months after that blew out an optic nerve that blinded her in one eye and cost her the independence of driving. The stage 8 to which she looked forward as compensation for all she missed as a CG has not been her reality. 

HB

OutsideLookingIn

Thanks, HB.  I appreciate your sharing your experience.

I keep talking about advantages/positives of transferring PWD to MC (more socialization for PWD, meals are assured, CG is free to be family instead of having to bear the tasks of care, CG's health frequently improves when relieved of the stress of caring).  I think some of why some people are reluctant is because of the guilt (I promised not to place him/her -- to care for him/her at home until the end).  I would love to know other reasons people are reluctant to transfer their LO.

OLI

MimiMinder

I think you summed it up that most people feel guilty about placing a LO because of a 'promise' made years ago. That promise probably came before any cognitive decline and without the person having a clue what it really it means to care for someone with dementia. 

Since you are on the outside looking in, and the caregiver isn't looking for advice (if I understood things correctly), you are in a tough spot. But as someone who cared for my LO in my home for a period of time, I can tell you that placing her was the most loving thing I could do. Once her needs exceeded my capabilities, I felt like I was sinking. My husband was great help, but there were many personal care responsibilities that fell solely to me. I am now able to be a daughter again and not the primary caregiver. And I am still her biggest advocate!

I would encourage you to contact the Alz Association and talk with someone who can point you to more resources. I will be wishing you all peace on this journey ~ Diana

aod326

Two things to add to the discussion. It might help if you can tell your LO's caregiver that placing her is something the caregiver would be doing FOR her and not TO her. Second, if you Google "When is it time for memory care" there are several sites with lists. Some, of course, are from MC centers themselves, but if you're lokking for a checklist to show the caregiver, that may help.

Good luck.

OutsideLookingIn

Thanks, everyone.  I'm going to give these suggestions a try.  Who knows whether they will work or what kind of reaction I will get (major anger from caregiver has been an issue in the past).  We WILL get through this.

OLI