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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Category Archives: Expectations

Life After Caregiving….

01 Friday Feb 2013

Posted by Ann Napoletan in Caregivers, Expectations, Grieving, Helpful Resources, Life After Caregiving, Saying Goodbye, Support system

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mom hands

From my perspective, the most on point piece yet regarding
life after caregiving…

Life After Caregiving, from The Caregivers Survival Network.

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Long Term Care: Asking the Right Questions….

06 Sunday May 2012

Posted by Ann Napoletan in Care Options, Expectations, Finding a Facility, Helpful Resources

≈ 1 Comment

Updated 11.30.16

Often, when looking at long term care options for our loved ones, time is of the essence.  While we would love to be able to take our time and thoughtfully evaluate as many facilities as possible, we rarely have that luxury.

In our case, my mom had been hospitalized for several days, when the occupational and physical therapists very unceremoniously told us that she could no longer live independently and it would be best if we found a place to take her directly from the hospital.  They felt that taking her home would just make a difficult transition even more painful, and I agreed.

So, with very little time and absolutely no experience in these things, the whirlwind began.  The ensuing days were challenging to say the least, and I wish I’d had questions prepared ahead of time.  It’s just so difficult to think clearly during such a stressful time, especially when entering unchartered waters.

Based on our experience, I’ve put together a list of questions that I hope will be helpful to families looking at care options.  They are presented in no particular order, but I’ve tried to group them by category where appropriate.

General

  • What is the facility’s full capacity?  What is the current census?
  • Describe resident demographic; age, gender, condition/cognition/mobility.  How many residents are living with dementia / Alzheimer’s?
  • What are the visiting hours?
  • How are changes within the community communicated?  For example: new policies, new management.
  • What on-site services are offered?  Physical and/or occupational therapy?  Hospice?  Podiatrist?  Religious services?  Hair salon?
  • Describe a typical day.  What types of life enrichment activities and entertainment are planned? What types of outings are planned? Please share a recent activities calendar.  Are activities geared toward various levels of physical/cognitive ability?
  • Is there a family support group?  Family Council?  Resident Council?  How often do they meet?
  • Does the facility provide laundry and cleaning services? Is there an extra cost?
  • Does the facility offer private and semi-private rooms?
  • Are small pets permitted?

Staffing

  • Is the staff certified in dementia care? If so, explain the certification process and continuing education requirements.
  • How many nurses and aides are employed?  What is the aide-to-resident ratio during both daylight and evening hours?
  • How is continuity of care ensured?  Are specific aides assigned to specific residents, or should residents expect to have a different aide each day?
  • Are all aides STNA certified; if not, what percentage are certified?
  • Are there any language barrier issues?
  • What is the tenure of the executive director?  The average tenure of the management team?
  • Describe the type and length of orientation/training for new staff members.  Do they shadow various shifts before their first solo assignment?
  • Describe the disciplinary policy.
  • How often is the staff in-serviced on dementia /Alzheimer’s?  What techniques/tools are used?  Are educational in-services offered to families?

Medical

  • What is the facility’s philosophy on psychotropic drugs?  What percentage of memory care residents are prescribed psychotropic drugs?
  • Are nurses on site around the clock?  How many RNs on staff vs LPNs?  What is the average tenure of the nursing staff?
  • Is there a “house” doctor, or are families required to take residents to their own private physician?
  • Does the facility have an in-house pharmacy, or are families required to order/maintain meds/supplies?

Care

  • What care philosophies are employed, e.g. person-centered care, validation, etc. Describe some of the related techniques and how they are used.
  • How are challenging behaviors addressed? At what point are psychotropic drugs considered, and does the family have to provide explicit consent before such drugs are administered?
  • What alternative therapies are employed, e.g. music therapy, art therapy, pet therapy?
  • Describe the levels of care.  Is care customized to each resident’s specific needs?
  • Is there an assessment process to determine needs?  What tool is used for assessments (e.g. Vigilan)?
  • How often and by whom are the assessments conducted?  Can families request an assessment at any time?
  • Is there any level of step-up care; for instance, if starting with assisted living, is there a memory care or Alzheimer’s unit for those who are in the more advanced stages?

Dining/Nutrition

  • Describe the mealtime procedure; how are all residents accounted for at mealtime? Is there a procedure in place to ensure that no one is “missed”?
  • What special provisions are made for residents who may need extra assistance at mealtime?
  • How are special dietary needs handled?
  • How often are snacks and hydration provided?  What are some typical snacks offered?
  • Are families permitted to dine with their loved ones?
  • Please share a recent week’s menu.

Security

  • Is the facility secured; describe security.
  • Do residents with dementia wear wander guards?
  • How often is the security system checked?
  • Over the past 12 months, how many elopement incidents were there?
  • Do visitors sign in upon arrival? Are there specific procedures to follow when taking residents out for a visit?
  • Is there a safe, secure outdoor recreation area for residents? If not, how often are residents able to safely enjoy the outdoors with accompaniment?

Regulatory Violations, Grievances, Issue Resolution

  • Please share results of the past three state surveys.  Describe any violations that have occurred in the past 12 months.
  • How are grievances are handled?  Is there a grievance committee that meets regularly? Is there a formal escalation process?
  • When there is a concern or issue, how quickly does staff follow up with family on the status?
  • Are there any pending lawsuits concerning this particular facility?

Financial

  • Describe fee structure (i.e. flat rate, a la carte, care levels, etc.).
  • Is the facility private pay?  Is Medicare/Medicaid/LTC insurance accepted?
  • How often are rates increased and, on average, at what percentage? Provide historical rate increases for the past five years.
  • Are payment plans or financial assistance offered?
  • Describe general terms of any required contracts.
  • What supplies (e.g. continence, etc.) is the family responsible for providing?

And finally, a few important do’s and don’ts:

  • DO ask to speak privately to residents and family members.
  • DO make unannounced visits at various times throughout the day/evening.
  • First and foremost, DON’T worry about offending anyone; if it’s on your mind, ASK.  Otherwise, you may find yourself regretting it later.
  • DON’T assume that extravagant decor and high prices equate to good care. That is simply NOT always the case.
  • DO remember that the people you speak with at various facilities are trying to sell you something.  Many are wonderful individuals who have a true passion for elder care, but it is always best to be cautious and not overly trusting.  For them, this is a business deal.  For you, it’s the life of your loved one.
  • DO listen to your gut.  Never doubt your instincts – they are almost always right on target.

Last, but not least, take advantage of the many free and readily available resources online and in your community.  Your local chapter of the Alzheimer’s Association is a great resource, as is A Place for Mom. (Note: It is important to understand A Place for Mom’s business model. Their revenue stream is tied directly to placements. Each time APFM places a client, they are paid by the facility where the placement occurs. I like to point this out because it is very helpful to have them compile a list of possibilities based on your needs and schedule tours for you; however, you must do your own independent due diligence.)

If your loved on is hospitalized, ask to speak to a social worker for some tips.  Once you come up with a short list of facilities, consult the health department or local long term care ombudsman.  You can find these resources online, and they are more than willing to provide assistance.

If you know the day is coming, try to be prepared. Unfortunately, I kept telling myself I’d start doing my research “soon,” but continued to put it off until finally I was backed into a corner.  This is never an easy situation, but the more prepared you can be when the time comes, the better…

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ALZ Lesson #423 – Rein in expectations.

05 Monday Mar 2012

Posted by Ann Napoletan in Expectations, Holidays, Old Blog Posts

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While traveling this journey, there are those times when our expectations tend to exceed a realistic level, and of course that can only lead to disappointment. I’m learning, but it hasn’t been easy and I still slip up from time to time.

Even as recently as Thanksgiving 2010, I’ve created some extreme let downs by expecting too much.  2010:  Mom’s first Thanksgiving at Eason House, and I had great visions of having our traditional meal there. I baked pies ahead of time, prepared the sides, and shuttled everything to the house, where I would cook the turkey.

Oh, I had grandiose dreams of my mom having a wonderful day and even being able to help out in the kitchen.  We would have such a lovely meal, almost like old times.

Enter harsh reality.  It was one of the worst days mom had experienced since she’d been at Eason House.  Crying (sobbing), screaming, wanting to leave.  You name it.  By the time dinner was ready, my stomach was in absolute knots and I didn’t care if I never saw another  Thanksgiving dinner in my life.  That was really a turning point for us in terms of holidays; the realization that they would never be the same.  In fact, they would never even slightly resemble the old days, so we needed to work on some new traditions.  This past year, we did just that – no more overinflated expectations – new traditions for a new chapter in our lives.  Acceptance.

The past few days have threatened to yank me into the land of overly lofty expectations yet again, though on a lesser scale.

On Friday, I received an enthusiastic text from Eason House.  The girls were so excited; apparently mom was having a great day and was “talking up a storm.”  At one point she said, “That dog is mean,”  then a bit later she went to the fridge, pulled out a bowl of jello and said, “I want this.”   They couldn’t get over how clearly she was communicating.

But the coup de grâce was when they heard her say, “You know Ann.”  Well, if indeed that is what she said, that would be the first time she’s spoken my name in … well, in as long as I can remember.  I couldn’t believe it; I was so excited at the thought that I decided I’d go straight to the house after work.

Of course, by the time I got there, it was all over.  She was very tired, extremely restless, and lacking anything that even slightly resembled focus.  She wasn’t talking much at all.

Fortunately, I had been prepared for the worst.  As I drove out of downtown, I told myself to rein in my expectations.  Let’s face it, the odds of the visit going anything like what I had conjured up in my mind were slim to none.  Cautious optimism is one way to describe it; in a way, you hope for the best but prepare yourself for the worst.

That night, when it was all said and done, I left Eason House feeling disappointed and a little sad.  But for the most part, I was happy to know that she’d had those wonderful moments of clarity earlier in the day – even if I wasn’t there to share them with her…

Until next time…Carpe diem…

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