Interviewee: Yolanda Cooper. She is the home health aide and live in nurse and caretaker for Gene Fixler.

Interviewer: Rona Wexler (Gene Fixler’s wife and Ariel Fixler’s mother)

Yolanda has years of experience caring for clients with short-term and long-term, chronic, debilitating, progressive conditions, even terminal illness.

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For over two years, Yolanda has been our family’s professional Home Health Aide, caring for my husband, Gene, who is in late stages of Parkinson’s disease and Lewy Body Disease, another form of dementia.  In just two years, Yolanda has seen Gene’s disease progression “drastically change” his physical and cognitive functions; yet she can still find the real person.  She has been challenged to accommodate his rapid physical, mental and emotional changes.  She is passionate about bringing him out, making his day better, making him feel valued, comfortable, touched and she does so with humor, pleasant firmness and grace.  She is fully comfortable and know the value of human, comforting touch.  Holding the client’s hand, massaging shoulders and neck to release strained muscles and ease tension.

Here is what she says about what her work means to her, her experience with her clients and their caring “circle” and tips on how to help her care for the person you love.
My reason to enter this line of work is to help those who cannot care for themselves.  I enjoy bringing that care, support and happiness to my clients.  I treat them the way I want my family member to be treated or how I’d want to be treated.

I understand that when I first start, I expect those who care for, or are responsible for the client, to share their experience and knowledge (instructions and guidance about his or her needs, desires, allergies, preferences, and schedule).  It is very helpful for this to be written down.  Clearly written or typed.

I know the person who hired me will observe me until they sense that I know what to do and how to do it.  It takes some time to build trust.  I think cameras are a good thing for areas like the living/family room and bedroom.  If an aide is uncomfortable with cameras, then that’s a warning sign.  It is especially important if the client is more physically or cognitively challenged, has communication issues or is left with the aide for longer periods of time or when the client lives alone.  You always hope you have someone you can trust, but it is reassuring to be able to check in.

Developing relationship with the client:

I start right away to develop a relationship with the client where they feel comfortable and feel that I am there to care for them without judgment.   I want them to be comfortable talking with me about things, even things that they may not feel comfortable talking about with family and friends.  Maybe they don’t want to burden family, or feel friends don’t know how to listen or take in what the client wants to share. They could just need someone from the outside.  I tell them they can talk to me about anything without judgment.  I develop a different type of relationship and intimacy with my clients. I’ve been blessed to be able to have a special talent for picking up on their cues, expressions, feedback to quickly understand their moods and needs and get close to them and feel understood.

Know what level of training and skills you need.  This may change as the client progresses.

Different caretakers have different training and skills and you should know what they are to make sure that they know how to properly, safely take care of the client and themselves.  For example, there are ways to lift and assist clients who have physical limitations.  If a client has dementia, for example, the aide should know they don’t have to speak extra loudly.  That can frighten or irritate the client.  Better that the aide get at eye level, make eye contact and speak clearly and in a normal voice.

If a client lives alone, the aide should have more training, experience and initiative to manage things such as arranging for prescription refills (and delivery) from the pharmacy, replenishing health care supplies, groceries, scheduling transportation and keeping to the patient’s schedule for medical treatments, physical, social and recreational activity.

The aide may accompany the client on healthcare/medical appointments.  If so, the aide should have enough verbal and written language skills (to communicate with the medical people and explain to the client) because the aide should ask questions and take notes. This should be shared with the caring circle/family (by phone and leaving it in the log).  The notes help to explain or remind the client about what happened during the doctor visit long after that appointment.

How can a family and “caring circle” help you be the best you can for the one your client?

Communication is fundamental.  I appreciate it when the client’s responsible person(s) provide a clearly printed list of instructions or notebook about the client’s schedule, list of medications and when (or who) gives them.

Also contact info for anyone involved with medical, rehabilitation or nutritional care, transportation services, neighbors who serve as a back-up.  This contact list should be on the fridge or by the phone.  This includes the best phone number(s) to contact key persons, especially anyone with a health care proxy.  If there are instructions about a living will or palliative care, DNR’s, this should be clearly explained to me.

Also check with the aide and responsible person(s) or back-up people if texting is also a good way to communicate.

The person hiring the home caretaker should start with a conversation to define what is, and what is not, expected.  Do not assume that an agency acquainted the aide about the client.   Aides usually arrive with little client background or requirements about the job.

Generally it’s expected that areas used by the client are kept clean and tidy, but aides are not cleaning people who climb ladders and do heavier work.  Heavier cleaning is not part of a typical job, unless of course, you find someone who wants to do it.   Everyone has different definitions of tidiness, cleanliness, healthy food preparation.

Giving and getting feedback is important.  Don’t let things simmer but ask in respectful way. Some things may not get done because the client needed more time to get ready, extra care, or someone simply to sit listen to them that day.  Maybe you find someone who enjoys cooking, even creative food preparation, but that’s not often the norm, so clarify what type of meal prep (or grocery shopping) the client desires.  Some caretakers have certain limitations, too, such as driving longer distances, lifting, technology, etc.  Make sure you both know about it.

It’s also very good, actually very important, for an aide and caregiver to keep a notebook or log to record when meds were given, the foods the client is preferring and what foods no longer digested as well.  The log helps us monitor “intake and output.”  Output (kidney and colon) can become blocked and painful, yes even dangerous for the client if untreated.  It’s easy to overlook, even more so when you have more than one person helping the client during the week.  The client doesn’t remember this or doesn’t see a connection about it if they are uncomfortable or they can be too embarrassed to say anything.

Only thing I really ask of the “caring circle” or family is that they ask me if everything is okay, anything I need.   Then let me do my job. If I’m doing a good job, or took the initiative that you appreciate, it feels good to hear and encouraging.  You don’t need to be around or hover.  I would hope you would use this time to take a break, get out, run your errands, meet a friend, or do something for yourself.  It’s good for you and the client.

It’s helpful if the caring circle can see that the client and I become like family.  A lot of times, I’m the only person they have consistent contact with from the outside world.  Very often, a client has become isolated.  That’s why I try to get them out of the home for light shopping, a picnic, movies, concerts, social groups, etc.  The client also becomes less anxious and sleeps better when we get out into the world and do something different.  Of course, cold winter weather makes that harder.  Gene used to fight me and the other aides on going out.  I think it was because he was embarrassed about how he looked so different; he knows he lost a lot of weight and said he “looks sick.” And he knows that his speech became much worse.  Now, he doesn’t fight going out so much and actually seems to enjoy it.

Over time, the clients’ condition can change, for better or worse.  They may not be able to enjoy things that they used to, they may become frustrated about it or simply lose interest.  It’s helpful for the family to tell me what they do or did that they liked: music, foods, cards or board games, reading aloud, television programs, walks (with walker, wheelchair or a cane), exercise classes, dance programs for seniors and those physically challenged, groups, support groups, types of movies, plays, or other entertainment or activities.  But the family may not understand that the client no longer enjoys what they used to.  New things will be added and old ones lost.

With Gene, he lost his ability to read: I heard it was gradual and by the time I came, it was gone.  This was very hard.  He lost his ability to concentrate so being read to made him even more frustrated. He used to like crime shows, he watched just about every Law & Order episode over and over.  It was the “go-to” show; his family used to tease him about it. This past year or so, I see that those shows seem to disturb him. Now he likes shows that are fun. Like Family Feud or the Price is Right, The Wendy Williams Show or a couple of energetic talk shows.  I know he didn’t used to watch these types of shows, but they attract his attention, now.  At first, the family didn’t understand that and I think they assumed I put the shows on for me.  I got a chuckle out of that.  That’s where that ongoing communication is helpful.

Yolanda Cooper is a certified Home Health Aide who has over 10 years of experience providing skilled, sensitive and compassionate care to her clients in the New York metro area.