We all know caregiving is complex. So much to learn, so much to do and so little time. This may surprise you. But, through personal experience, I believe the most critical skill for a caregiver, regardless of diagnosis, is good communication. Understand that effective communication will always be a work in progress, a goal to strive towards.
You, as the family caregiver, are the super-connector for all your loved one’s physicians, service providers as well as family members and friends who care.
At times, you will feel as if you’re being pulled in 100 different directions by all these entities. They are not trying to make your life hard (although it may feel that way!) They are simply trying to get the information they need to best help your loved one. And, of course, there will always be their protocols and regulations they must adhere to. Remember this: you are all working on behalf of the best interest of your loved one.
So I offer up the following pointers for good communication….guidelines I try to follow. I’ll use communication with my husband’s neurologist as an example.
On a daily basis, I keep a personal notebook (for my eyes only), recording vitals & other key info at each provider visit. (PCP. PT, OT. Palliative care team. Nurse manager at memory care.) I also record info related to each event (falls, unusual eating or sleep problems, dizziness, etc)
Before each appointment, I set aside time to review my notebook and prepare for the appointment. I list key events & my top 3 concerns that I wish to discuss. Fortunately my husband’s neurologist is with UCHealth which provides a robust patient portal. I submit my top 3 concerns via the portal before the appt.
Day of the appointment, I bring along a packet with printed copies of any additional relevant information. I ask to speak to the intake nurse out in the hallway & hand over my packet. This last appointment, my packet included name & address of new memory care; recent labs; low b/p event reported by PT, report by mobile dental hygienist.
The hardest communication piece for me is to keep my mouth shut during the exam! It takes a long time for Bill to process each question & formulate his answer. When the neurologist turns to me to discuss, I will often rephrase what I believe she has said so I ensure I understand. There is so much information exchanged during our hour visit, she always ends up correcting me. You must speak up and get confirmation or correction.
And then there is the post-appointment follow-up. This is a very important piece as you may need to get clarification, report reaction to new/adjusted meds or ask for more resources.
My advice: Ask each physician or provider how best to communicate with them. Believe me, they will be most appreciative. I recently asked the nurse manager at Bill’s new memory care how best to communicate. She prefers quick questions through text message & likes a monthly one-on-one with each family. We went ahead and scheduled our monthlies right then and there.
I hope these pointers help you as you super-connect on your loved one’s behalf. Becoming a skilled communicator will help your loved one get the best care possible. And something amazing may happen along the way….you and the physicians/service providers may become “partners in care.”
(Many thanks to our guest blogger, Jane Mullins, for sharing her wonderful insight into effective, empathetic communication with loved one with dementia. Jane is Freelance Dementia Nurse Consultant, Author & Researcher. Her new book is “Finding The Light in Dementia.”)
One of the biggest challenges of dementia is that it can affect a person’s ability to speak and communicate their needs. This must be so frustrating for the person and for their loved ones. Often people withdraw from social circles as the effort to convey their needs and ways of getting their voice heard becomes too hard and takes time. Bearing in mind that their brain also may be slower in processing information and slower in gathering thoughts to communicate back, here are ways that can help you stay connected and communicate together:
Take time, give your loved one time to express themselves
Being stressed can make speaking and communicating harder when you have dementia. It is important not to rush your loved one or finish their sentences for them. When we slow down, we can take more notice of non-verbal communication, this includes facial expressions, gestures, posture and movement. Be present with them, face them on the same level and maintain eye contact. Take a moment to be still and mindful, try and learn to respond without negative emotion. Also, be mindful that if your loved one’s mother tongue is different from the language they have spoken for most of their lives, they may revert back to old language or a mixture of both. The use of picture cards may be helpful here (if they are able to see them).
Be aware of possible hearing loss
Don’t shout or over exaggerate and make sure background noise is at a minimum. You can speak a little slower but make sure that the natural rhythm of your speech is maintained. Also make sure that if your loved one wears a hearing aid, that it is in working order and try and arrange regular visits to your audiology clinic. Try and involve family and friends in helping you with hospital and ophthalmology visits.
Feelings are often communicated more easily than facts
Often where speech and language deteriorate, the language of emotions step in. It is important to recognise your loved one’s need to communicate and here you may need to find creative ways of doing so. If they appear stressed, they may not be able to express that they are hungry, in pain or need the toilet. People who have dementia may speak more in metaphor or skirt around those “lost” words using other well used phrases. It is important to listen to what is being communicated, not solely by concentrating on the words being spoken, but more by the feelings being conveyed.
It is so important to show that you are listening. Sit together on the same level and use eye contact, you may say something like “I know it must be hard not being able to tell me what you want to say, but I am here for you.” This way can help you stay connected.
Avoid contradicting or correcting
Be aware that whatever your loved one is saying; their reality is real to them. For instance, if your loved one insists on going out in the rain without a coat, their reality may be very different to yours. Try and say to them “I believe it is raining outside, shall we put our coats on?” that way you are being honest but not challenging or contradicting them. We must try to imagine how we would feel. Also, be kind to yourself, it is tiring when one of you has difficulty with communicating, take some slow deep breaths be in the moment.
There are more suggestions and tips to help you learn to re-connect and communicate with your loved one in my book, Finding the Light in Dementia, a Guide for Families, Friends and Caregivers www.findingthelightindementia.com
I want to talk about a very important concept, building your “care partner team.” It is far too easy to think as a spouse (or primary family caregiver) facing caregiving … “I can do it all” or “I have to do it all”.
You know I always loved that song by Helen Reddy, “You and Me Against the World.” But that is absolutely NOT the right perspective. You will burn out AND loved one will miss out on the caring, love, expertise and rich relationships with others.
Building your care partner team is vital. Ours include a wonderful adult day program (two days a week), our adult children (living across the country), my husband’s alumni friends, his doctors and nurses. It’s true that my husband’s condition continues to “evolve” and I often feel I am in a state of constant assessing and adjusting. But I know I have my “care partner team” in place and ready to help us. Before I ask for help, I am careful and respectful to think about the right person and right question to ask.
I am often faced with the challenge of getting my husband somewhere that I know is impossible for me alone. Instead of just saying, “sorry I just can’t get him there”, I think about who best could help me. Last April when Bill’s sister passed away in NY, it was my Denver son who flew in and helped me fly his dad to a family gathering and funeral that meant the world to Bill. Afterwards, the 3 of us drove around to special places in Bill’s hometown as Bill shared memories of his years there. It was an incredibly meaningful time for each of us. And, it was at the end of that visit that our Denver son looked at me and said, “Mom, you can no longer do this on your own.” And so began our move to Denver.
The lesson: Build and nurture your care partner team for your loved one and yourself. It’s not just finding and coordinating care, expertise and support. It’s about expanding the circle of love for you and your loved one!
Caring for a loved one with Alzheimer’s is a full-time job. It is a thankless and exhausting labor of love and one that many caregivers are unwilling to step away from even for a moment. However, it is this sense of obligation that often results in caregiver syndrome. CNN notes caregiver syndrome presents with guilt, anger, depression, and deteriorating health. It can be debilitating and compromise the care being given. Here are a few ways to combat caregiver fatigue so that you may continue to provide lifelong care for your aging family member:
Ask for assistance. It’s easy to get wrapped up in the day-to-day care of a person with Alzheimer’s, dementia, or other cognitive disorder. Between repeating yourself over and again, administering medications, and calming unnecessary outbursts, you may not even have time to ask for assistance. But you should. Adult children, grandchildren, and even close family friends may cherish the opportunity to bear some of your burden.
Consider respite care. Even if the afflicted doesn’t have other family that can step into your shoes, there are a number of companies that offer respite services specifically for Alzheimer’s caretakers. The Alzheimer’s Association assures that it’s normal to need a break. It does not mean you don’t love the person with dementia but that you understand his or her well-being is directly related to your own. A respite provider can take over every aspect of care including cooking, cleaning, bathing, and companionship.
Outsource time-consuming tasks. Caring for an Alzheimer’s patient also means caring for their home and pets and fulfilling other obligations on their behalf. Many of these time-consuming tasks can easily be left to the hands of others without compromising your position as primary caregiver. Dog walking, cleaning, and grocery shopping are just a few of the chores that should occasionally be handed off in order to give you a break.
Take time for yourself each day. Your mental and physical health should be among your top priorities. Set aside at least an hour each day to focus strictly on yourself. Read a book, paint your nails, go for a walk, or simply snuggle with your favorite four-legged friend; studies have shown that time spent with dogs can reduce stress and help heal depression and anxiety. Your body and mind will feel better if you physically separate yourself from your duties even if just for a little while when your loved one is sleeping.
Understand the disease. One of the biggest sources of stress in many Alzheimer’s caregiver’s lives are the unpleasant personality changes that may accompany the disease. It’s not unusual for Alzheimer’s patients to be described as cantankerous or overly-emotional. This is stressful enough at home but can be even more so when trying to do things to keep the patient’s life as normal as possible. Traveling, dining out, and doctor’s’ office visits are especially trying. Remember that Alzheimer’s is a degenerative disease that takes a toll on the brain. Your formally sweet and patient grandmother may have morphed into an angry and bitter woman who lashes out at everything. She can’t help it, and she isn’t trying to be difficult. Once you understand the effects on the brain, it is easier to handle the emotional roller-coaster associated with watching helplessly as your loved one changes for the worse.
Remember, just because you’re in charge of the daily mental, physical, and medical care of someone else doesn’t mean that you should set your own needs aside. There is no shame in stepping out for a moment to reclaim your sense of self. After all, you can only provide the best care if you are in your best shape.
As caregiver spouse for my husband (with Parkinson’s and Lewy Body dementia), I want to share a few of my key “lessons learned.” I wrote this “still relevant” list in another blogpost 2 years ago. Amazing how timeless these lessons are.
As a caregiver, recognize that you will ride an emotional roller-coaster. There were moments of feeling blessed for receiving an early diagnosis and then times of despair as I realized that our future had changed forever.
Recognize that while there may be no cure for a loved one’s diagnosis, we each can choose our response to the situation. I’ve always been an action-oriented advocate. Know there is a time for that BUT there is also a time for just being present with your loved one. There is great healing in your presence, even just sitting in silence.
Certainly educate yourself and your family members about the illness and prognosis. But recognize that each family member will process the situation differently and in their own time. My daughter told me she could not bring herself to read the info I sent her, but one night she watched a Netflix show, “The Boss”, in which the lead character has Lewy Body. She told me she sat, riveted to the show, and finally was able to understand what was happening to her father.
Ensure you build and maintain a circle of support for your loved one and for you. My husband’s “twice a week” CAREgiver is a vital part of his life. He tells me that she patiently helps him, shares in his interests and even plays the piano for him. As for me, a colleague convinced me to take a much needed birthday getaway weekend with a childhood friend while my son took my husband to see his sister. Sometimes it seems that all the planning to do special events is just too much trouble and expense, but it is critical for your well-being.
One thing I struggled with even before being a caregiver was getting enough sleep and fitting in workouts. This is not just important. It is vital to your physical and emotional health. Set a bedtime and get at least 7 hours of sleep. I choose to do my workout in early morning. It doesn’t matter when you exercise, meditate or take time for yourself. The key is actually doing it!
And, finally, recognize you are on your own unique journey. There is no right or wrong way to do things. So much is out of your control. If you act out of love, compassion and the humility that you need others, you will be doing the best you can for your loved one and yourself.
Thanks to all the many local friends and colleagues who support me each day as well as some of the most amazing virtual colleagues. It is from your wisdom and insight that I have been able to craft my caregiving philosophy and all I do. I love each of you, Viki Kind, Gary LeBlanc, PK Beville, Susan Baida, and so many more.
If you’d like to share tips from your caregiving journey, please join me on Facebook at “Transition Aging Parents”.