I have just placed my mom into a skilled care facility.  The transition is difficult for us both.  Educating the staff on what works best with my mom is a delicate dance between what they do and what we expect.  We are still making adjustments but for all you folks doing a similar thing, here is a letter I’ve composed to help communicate our position.  Maybe it will help you, too.

Dear Caregiver,

Have I told you how important you are to us lately?  Along this journey with my mother and Alzheimer’s disease, you play a very important role.  You have the power to guide the outcome of her day by your sensitivity, creativity and kind nature. What helps my mother helps me.  And when Momma’s happy, everybody is happy.

Forgive me if I ever question the way you are caring for my mother.  You see, I am responsible for her welfare.  Before I chose you to help, I was providing her care.  Through trial and error, I figured out what methods worked best to achieve a pleasant day while accomplishing the activities of daily living.  When I could no longer handle the high demands of providing care alone, I turned to you for assistance.  However, I have the experiences that you could benefit from to help you do your job.

I have the privilege of knowing my mother very well.  I know her history, her preferences, and her personality.  I know how she might have responded to your personality when she was well.  Now that she has dementia and can’t use words to convey her wishes, we both need to take the time to listen to her nonverbal cues. Then we will best know how to approach and achieve what we are here to do.

We are both here, communicating with each other for one purpose―to care for my mom.  For me, this is a daunting task that I take very seriously.  I often feel helpless and afraid that I’m not doing everything I should to care for her.  At times, I have chosen to look the other way when things seem amiss because I don’t want to become estranged from you.  I need you.  I have learned a lot from you and value your input.  I couldn’t do this without you!

I need to trust your care for my loved one.  I know this isn’t an easy job for either of us.  I have added you to my team in hopes of working together.  Your interaction with my mother is of major importance to her quality of life.  If you’re having difficulty, let’s put our heads together to come up with a solution.  And when we do communicate, please pass that information on to the next caregiver so our solution and awareness won’t be lost.

In this information age, there are solutions to our challenges with a click of a mouse, a visit to the library, or time spent watching a DVD.  I encourage you to continue to take the time to educate yourself on all aspects of your job.  Please don’t be offended if I offer a suggestion when I think I know a better way.  And I’ll welcome any suggestions from you.   I want to keep the conversation going.  I am for you, not against you.  I want us to succeed.

I believe I speak for all the families who rely on someone else to care for their loved ones.  Our peace of mind and the quality of someone’s life depend on it.

Thank you.

The Area Agency on Aging is pleased to announce its new dedicated Alzheimer’s helpline.  It provides free, trusted, unbiased information about services available in Mobile, Baldwin and Escambia Counties for individuals and families affected by Alzheimer’s disease and related dementias.  The phone is answered Monday through Friday from 8 a.m. to 5 p.m. on normal business days.  The service is provided in partnership with the Alzheimer’s &  Dementia Coalition of South Alabama.

Try these tips to prevent wandering out of the house by your loved one.

1. If there is a securely locked high fence around the whole perimeter of the property, let your loved one go outside, in good weather.  Go outside with them.
2. If there is no secure fence or there is other danger to allowing them to go outside at will, try these approaches:
   1. Remove from site triggers that would make the loved one or person with dementia think of going out, such as coats, umbrellas, shoes, purse, etc…
   2. Tell your loved one or person with dementia frequently where they are and why, in a calm tone of voice. Reassure them with words like, “XXX will return in an hour to be with you” or “Your family knows where you are”.
   3. Don’t confront or argue with the person, walk with them and redirect to another part of the house or to an activity. Use humor if possible.
   4. Purchase childproof doorknob covers, or deadbolts to put on the door above the loved one or person with dementia’s eye level, or slide bolts on the top or bottom of the door. These items will never be used when the loved one or person with dementia is alone in the home, only when someone is with them.
   5. If you don’t want to do any of the above, place warning bells above the outside doors, or activate the house alarm system, or get a monitor that goes on the loved one or person with dementia (such as a toddler monitor) or a pressure mat alarm, so at least you know when your loved one or person with dementia has left the house.
   6.  Try putting a full-length mirror on the inside face of the outside door. Sometimes people don’t recognize themselves and think someone is standing there and turn around and go back.
   7. Try putting a black throw rug in front of the outside door. To some people, it looks like a hole in the floor and that they won’t attempt to cross it.
   8. You might try to hide the outside door by putting a curtain in front of it, or maybe by making sure it is the same color as the surrounding walls, that way it may not be seen by the loved one or person with dementia.
   9. Put a big sign on the outside door saying “Stop” or “Do Not Enter” or “Danger- Do not Open”.
   10. Sew ID labels in the loved one or person with dementia’s clothes, or get a special Medic alert bracelet for the loved one or person with dementia, if they have a history of escaping the house. Also they need to have a current picture and a piece of unwashed clothes (for tracking dogs) handy to give to the police, in case the loved one or person with dementia does escape.
   11. If the loved one or person with dementia escapes while you are in the bathroom , grab your cell phone, and run out side, look around the whole block the house is on. Cover the whole block, if not found, call 911 and tell them that a person with dementia has escaped the house and is lost. Try to convince them that this person needs to be found immediately, they need their medicines badly.
   12. If the loved one or person with dementia doesn’t recognize his or her home as where they live, they may want to leave to go “Home”. They may be thinking of a home they lived in previously, such as in their childhood. Instead of telling them that this is their home, talk about the home they are thinking of. Reminiscing about it sometimes lessens their urge to leave.
   13. If they still want to go “home” tell them you will walk with them, and take a walk with them or tell them that you will drive them there, and take them out for a drive. It may help if you stop to get a treat, an ice cream cone, or snack. They probably will have forgotten about the other home by the time you get back, and may even recognize where they live now as home.

By Carole Larkin  MA, CMC, CAEd, DCP, QDCS, EICS is an expert in Alzheimer’s and related Dementias care. She has a Master’s of Applied Gerontology from the University of North Texas, is a Certified Alzheimer’s Educator, is a Dementia Care Practitioner, is a Qualified Dementia Care Specialist, and an Excellence in Care Specialist at the Alzheimer’s Foundation of America, as well as a Certified Trainer/Facilitator of the groundbreaking dementia care training tool, the Virtual Dementia Tour Experience She is a Certified Geriatric Care Manager who specializes in helping families with Alzheimer’s and related dementias issues. She consults with families telephonically nationwide on problems related to the Dementias. Her company, ThirdAge Services LLC, is located in Dallas, TX, and her website is www.thirdageservices.com.

As my mother’s abilities have declined, I’ve become creative in solving the daily challenges of personal hygiene.  Standing in front of the bathroom sink to brush her teeth became very difficult as my mother’s stamina weakened.  The day I had her sit in her recliner to carry out the task was a relief to us both.  I have a small table that I can place all the implements I need close by.  I lay a towel over my mother’s chest to keep her dry.  I begin the process by first using a brush pick to

Tools used to brush teeth

clean out the excess food stuck between her teeth or pocketed in her jaw. I wipe what I dig out on a paper towel.    I then put toothpaste on a soft bristle child size toothbrush.  All the while, I compliment my mom on what a good job she’s doing, that her dentist would be proud, and what we are doing next.  On most days, she will open her mouth willingly and allow me to gently brush. Next, I give her a small cup of water to swish around in her mouth, then hold up a small bowl for her to spit the contents of her mouth into.  Sometimes I have to show what I want her to do – swishing the water in my mouth and spitting it into the bowl.  I inspect our progress, then may need to use the brushpick again or brush again, and rinse.  Once satisfied that we have thoroughly cleaned everything, I give her a capful of mouthwash.  I remind her not to swallow the mouthwash but show the swishing motion with my mouth and have the bowl close by to empty her mouth.  I wipe her mouth off with the towel on her chest, then finish by applying some chapstick to moisten her lips.  She will agree that she feels better now.

If she is not willing to open her mouth at the beginning of the process, I usually move on to her hands, wiping her hands with a damp towel, cleaning her fingernails with the tool attachment to her fingernail clippers, and applying lotion to her arms and hands.  This will distract and relax her and she will usually agree to open her mouth.  Most times, I follow the teeth cleaning with the hand washing.  I also play easy listening music while we do both activities.

What once was a problematic situation such as bad breath, food stuck in her front teeth and agitation in trying to remedy that has turned into a daily intimate ritual that is satisfying to us both.

I have to report what a great help our hospice nurse is to my mother’s care.  My mother has been experiencing problematic health problems for several months now.  When the assisted living nurse brought it to my attention, we went to see Momma’s general practitioner.  That visit resulted in a few changes but the problem persisted.  We next consulted the hospice nurse, Candice,  who began to diligently research what the problem might be.  She checked for a bacterial infection which turned out negative. She wrote orders and consulted with the doctor at the weekly team meeting whether to discontinue a monthly preventative order that she takes to prevent recurring infections.  They decided to keep that in place and see if the new order solves the problem.  So far, it seems to be working.  I am so thankful that we have help in solving health problems that my mother can’t express with words.  You get a gold star, Candice, for making such a difference in  both of our lives.

1.  Third Thursday of every month at 10:00 a.m. at the Human Resources location of South Baldwin Regional Medical Center, 1613 N. McKenzie Street, Foley, AL  36526.

2.  Last Wednesday of every month at 10.00 a.m. at the The Brennity of Daphne, 27440 Co. Rd. 13, Daphne, AL  36526.

3.  Third Thursday of every month at 9:00 a.m. at the Foley Senior Center, 304 E. Rose Street, Foley, AL  36535

These groups are open access, private and confidential.  For more information, call Kitty Bradshaw, RN, CHPN, or Leslie Johnson, MEd @ Covenant Hospice, Daphne, AL, 251-626-5255.

Today we qualified for hospice.  We had to drop hospice three months ago when we  moved into a special care assisted living facility (SCALF).  Since we saw my mother’s doctor last week, I asked for an order to be reassessed.  Odyssey Hospice came out and did an extensive interview with me and momma,  gave me an overview of their services and we filled out paperwork.  By the end of the assessment, I was given the news that we were approved.  This means that they will provide support and care for my mother by means of medications, pullups and bed pads, and 24/7 nursing care and all medical equipment related to the terminal illness. She will have a consistent CNA coming 3 days a week to bathe her. I can call on their social worker, enjoy spiritual care and can consult them for medical advice without leaving our facility. Having hospice is like having a safety net.  Maybe you qualify for hospice and just don’t know it.  Look into it.