Friday, April 5, 2019

Memory Care Unit; Things that Might be Helpful to Know


While most of our experiences at the memory care unit have been positive, there have been a few bumps in the road. Not totally unexpected given the challenges of providing care for 40 residents with dementia. Regular readers will remember over a year ago, when the physician lowered Jim's citalopram without consulting with me first. Jim's agitation increased dramatically, he had trouble sleeping, and lost his appetite. You can read about it here. Things stabilized once his usual dose was resumed. But I remember only too well the frustration of this experience. Worst of all, Jim suffered mightily. He was inconsolable during this period.

Fast forward to today. I learned yesterday that this occurred with another resident just recently. Her decline was even more dramatic than Jim's. Family is, of course, very upset. I was able to share with Ilene (daughter) about the GDR (Gradual Dose Reduction) policy as mandated by the federal and state government. We commiserated about our frustration and decided to do something about it.

Together, Ilene and I are developing a welcome packet for new family members that includes information about GDR and other basic, helpful information about our unit. When I look back on our first couple of weeks here, I remember feeling totally overwhelmed. I always make an effort to reach out to new family members, but perhaps putting something in writing would be helpful too.

Ilene created a form to document a GDR; it is filled out by the nurse manager and is signed by the physician, the nurse and the family member prior to the medication change. This way family members are aware right from the beginning, they know that they have a right to refuse this change, and are able  to monitor for changes if the medication is decreased.

While we are still working on the GDR form, I want to share with you the welcoming letter that I created; it covers some helpful tips for newcomers. While the specifics for memory care units are different, a lot of the basic concepts will be the same.



Welcome to the Memory Care Unit

There are many challenges facing us when the decision is made to place our family member in memory care. We hope that this information will help with the transition. 

  • Be sure to reach out to other family members for any questions that you may have. You’ll find that we are well connected and we support each other on this difficult journey of dementia. We’re a friendly group and we often feel like one big family. As you get to know the residents and family members, you’ll find that our caring spills over to all the residents on this unit.
  • Be sure to introduce yourself to the staff. Socorro is the Nurse Manager and Tifanie is the lead LPN. RN uniforms are royal blue, LPN uniforms are light blue, and CNA uniforms are navy blue. There is a daily posted schedule in the office that shows which CNA is responsible for the care of your family member. 
  • Structured activities are offered each day. The schedule for the activities is posted on the white board just as you enter the unit. The activity leaders are caring and experienced in working with folks with dementia. The activities provide an opportunity for folks to socialize with each other as well as to participate in different activities. You’ll find everything from Bingo, to Happy Hour (non-alcoholic beer and wine), to seasonal celebrations. 
  • There are plenty of beverages and snacks available at all times on the unit. Ask a staff person or a family member where to find the goodies. Kate is the dietician for our unit (maroon top). You'll often see her on the floor at lunch time.She is very happy to work with  you to make sure dietary needs and preferences are met. There are always two alternatives at each meal, and other options are available also, if needed.
  • If needed, physical, occupational and speech therapy are provided.
  • Family council meetings are held occasionally. Usually there is a mailing or a notice at the front desk giving notice when the next one will be held. These meetings are for questions and concerns specific to the unit, but not specific to an individual resident. We are encouraged to start with the nurse manager for concerns specific to one person.
  • Occasionally there are untoward events, such as falls or a change in health status. If you wish to be notified of these events when they occur, be sure to let the Nurse Manager know. 
  • You may wish to review the plan of care on a regular basis. This will provide you with information on the specifics of the care and level of assistance needed for your family member.
  • Sometimes medication changes are made. If you wish to be notified before medications are changed, be sure to let the Nurse Manager know. CMS (Centers for Medicare and Medicaid Services) regulations require attempts to gradually reduce the dose of certain medications. This includes anti-anxiety, antidepressant and antipsychotic medications. The response is monitored and documented. Family members can provide important feedback in this type of situation. 
The journey continues. I'm hoping my blog can in some small way make a difference and help others who are traveling down this road. 

Thanks for stopping by.


  

13 comments:

DJan said...

Jim is so fortunate to have you as his caregiver. And now that extends to all others in the unit. I hope that the doctors will honor these requests, which are so important in keeping the sufferers stable and happy. Thank you so much for sharing your journey with me, Carole. It's a difficult time, but people like you make a huge difference.

Tom said...

This seems like it would be very helpful -- and comforting -- to people new to the situation. Good for you for taking the initiative, and like DJan I hope the nurses and physicians appreciate what you're doing.

Carole said...

DJan, Theoretically, you can refuse medication change on behalf of your family member. However the pressure is on the facility to proceed with these dose reductions. Failure to do so brings the facility under close scrutiny by the government facility inspectors. Thus there is pressure to avoid receiving a citation for failure to follow these guidelines. It appears that if specifics are well documented, the decision will stand up under the scrutiny of the reviewers.

I quickly became a part of the extended family for all of our residents. I like to think of myself as one more person in their life to keep an eye out for them and to help them feel they are cared for.

Carole said...

Tom, I know that the nurses are very happy to have this kind of family involvement. The physician is on the unit only once a month. If more pressing needs arise, they are seen by the NP, or the physician will Skype with the RN.

Yesterday there was a new gentleman getting settled in our unit. I spoke to his wife, and you could see the relief as I reassured her that we are a family friendly group, and are available to show her the ropes and help her in the transition during this difficult time.

The hopelessness of dementia is brightened by the fact that we are trying to make the best of a difficult situation, and being able to support each other is a true blessing.

Arkansas Patti said...

Wow, that letter is so informative and helpful for the new persons. What a comfort for them to know they are not alone in this journey. You were so through, even to the color of the uniforms which would be a huge help. Jim is lucky but so are the others who are traveling the same path to have you guiding them. Your caring shines through.

Carole said...

Patti, I'll never forget that first day on the unit with Jim. I was scared, felt very alone, and terribly overwhelmed. The guilt, the devastation, the relief and everything in-between.... The feedback I've gotten so far has been very positive. I'm hoping to spread the spirit of a caring community as we support each other on this journey.

Jabberwalky08 said...

Carole, this is brilliant. I would have appreciated that type of information when J started at Avita - the voice from other family members means so much. It's quite a challenge to figure out who is who, what their jobs are, what the communication chain is, etc. I finally figured out that everything is moving all the time - residents moving in, moving out, having various needs, staff changing every shift and every day - that nothing stands still, really, and we family members need to learn how to function at that pace and with that constant flowing.
I'm learning a ton from you!

troutbirder said...

Brilliant.... I'm thinking of doing something similar here in an unnamed Minnesota Memory Care institution. Am off to there no (this morning) later tomorrow will follow up with a few questions. Thanks...:) ray

Carole said...

Jabberwalky - thanks for the feedback! You're right, everything is constantly moving/shifting. The family support is so important! I'll never forget that first day, feeling alone and scared. And if that was how I felt, imagine how Jim must have felt.

Troutbirder - Ray, I know you are going through some real challenges right now. Sending lots of warm wishes your way.

Dr Sock said...

Carole, I have scarcely been reading any blogs for the last couple of months and I am just catching up on your more recent posts. Sorry for my absence. I think of you often, and your admire your grace, kindness, and steadfast love for Jim as both of you negotiate this difficult journey.

Your welcome letter is wonderful, and what a great way to reach out to other family members at the memory care unit!

Jude

Carole said...

Hi Jude! I enjoy reading your blog! And you certainly have been very busy; lots going on in your life too!

Lately I've been finding comfort in poetry by Mary Oliver, and writings of Thich Nhat Hanh. I've become good friends with a woman whose husband is in the same memory care unit. It's been wonderful to have each others' support. Sadly, he is now close to death. The memory care staff are doing an outstanding job of providing end of life care to him and to his family. Reassuring to see this, as I know our day will come too.

Chris Lesnar said...

This blog post shares useful information about assisted living facilities. It is beneficial for people who need dementia care facilities.

Memory Care

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