Aging can be a difficult process. Between aches and pains, forgetfulness, diminished independence, and career and retirement worries, getting older can be complicated and scary. Roles are often reversed between parents and children, as elders become less able to take care of themselves and adult children take on increasing responsibility as caregivers. Sometimes, though not always, dementia and other cognitive diseases accompany the aging process and the end of life. Through working in hospice with families managing these illnesses with their loved ones at the end of life, I've compiled some helpful information. Let's go over the basics.
First, according to Alzheimer's Association at Alz.org, dementia and related disease affects more than 5 million people in the US, and disproportionately affects women over men. There are many different types types of diseases that involve dementia and cognitive decline, and lots of medical terminology describing the different symptoms you may see.
Dementia is a general term referring to a decline in mental ability accompanied by memory loss, difficulty communicating, and disorientation to people, places, or things that were once familiar. The distinct types of dementia result from the different areas of the brain that are affected.
Alzheimer's disease is a form of dementia caused by abnormal proteins around brain cells, beginning in the hippocampus which is responsible for memory. The disease has distinct stages with a progressive decline in mental functioning, with the hallmark first symptoms being the inability to learn and retain new information. Someone in the initial stages of Alzheimer's may experience mild forgetfulness or difficulty choosing the right word in conversation. Over time, organizing and managing daily tasks becomes harder, remembering things that happened a short or long time is harder, and communication with spoken and written words becomes more difficult. Difficulty using language is called dysphasia or aphasia.
The middle stages of Alzheimer's disease can involve wandering behavior and increased disorientation. The individual may have lapses in memory of details of their lives, like their name or address. They may need to be reminded how to dress properly for the weather, or prompted to initiate daily tasks like eating, bathing, or going to appointments. They may become unable to cook independently, leaving pots over lit burners, or leaving the gas on the stove. Risk of becoming lost and being unable to return home increases during this stage.
In the final stages, the loved one loses recognition of family members and caregivers by name, though they may recognize familiar vs. unfamiliar faces and have flashes of intact memory. Their personality may change dramatically. They may become verbally and physically aggressive. They may become incontinent, needing assistance with toileting and feeding. The ability to use and control muscles is diminished and they are unable to move about on their own. They may have difficulty swallowing, and their immune system is compromised. If you want to learn more about the signs, symptoms, and stages, click here for a 10 sign of Alzheimer's checklist. I will describe other forms of dementia in later posts, including vascular dementia and dementia with lewy bodies. You can learn more now about these conditions by visiting the Alzheimer's Association Dementia page here.
Now let's turn to caregiver grief. Grief is an important concern for family members witnessing the mental decline of a loved one, especially for those responsible for helping with day to day tasks. Depending on the severity of the illness, family members may choose to care for the patient at home or move them to an assisted living or nursing facility. There are many different levels of retirement and nursing facilities. Let's go over some of the terms used to describe them.
Many retirement communities offer services on a continuum based on need. Independent living is at the least restrictive end of the continuum. The patient has their own apartment within a retirement community, is responsible for their own meals and daily schedules, but have access to amenities like transportation, social events, activities, and common social areas. Assisted living is a next step when patients' needs become higher, and involves helpers in the home to assist with tasks like cleaning, meal preparation, medication adherence, and assistance with bills. Some facilities provide all meals in a dining hall type environment for those needing this level of care. Skilled nursing is an added service in some facilities when patients' medical conditions require daily health monitoring. Memory care is an even more intensive nursing environment for dementia, where patients are typically confined to one area of the facility to prevent wandering, and are monitored 24/7 for medical need. Hospice care is offered in addition to any of these levels of care when patients are diagnosed with a terminal illness and expected to live less than 6 months.
Some families decide to keep patients at home throughout the course of illness, with family members primarily responsible for looking after the patient's day to day needs. Home health and hospice care can provide additional support to family in the home. Some families hire private health aides in addition to home health or hospice to give family members a break or allow them to continue working. Many primary caregivers become exhausted with the round-the-clock care that dementia patients require in the late stages of their illness. Because caregiver burnout is common, the importance of self-care can't be over-stated. I will dedicate future posts to this topic.
As patients with dementia are unable to do things independently, become combative, and sometimes dramatically change personality, caregivers and especially their adult children, must adjust to the loss of the person/mother/father they used to know. Because the loss of the relationship happens gradually through the mental decline but before death actually occurs, the grief process is unique and starts early. I will write future posts on this topic, but in the meantime for more information, visit the grief section of AARP's caregiving website.
Look for future posts on other types of dementia, caregiver self care, and caregiver grief. And as always, if you or someone you know if suffering from grief of any kind, please call a counselor.
If you or someone you know if sad much of the time, is withdrawing from things they used to enjoy, seems hopeless or having thoughts about death, this poem may resonate with you. I wrote it sometime last year during a particularly long stretch of down days. I've struggled with depression on and off throughout my life, and writing about it has always helped. I encourage others experiencing depression to speak to someone you trust, and own that it happens. But don't let it define you. Being sad isn't all you are...you are a bright, blooming, vessel of energy beneath the veil of depression.
by Kambria Kennedy-Dominguez
Nine days passed, or twenty nine, or ninety nine.
Breath keeps coming, oxygen flows in and out,
I am breathing above great wall of water.
Only to find I’m trapped again beneath
Clear white water turns to stale black confinement
A trick of the mind
Makes me believe I am sadness.
From under it I gasp, I must rise-- it is only water!
I command myself without compassion for illness or exhaustion
I must transcend this trick, expose the foolery of a sad mind
I grasp, I swim, I grasp
Upward toward air and daylight
As if there is leverage between finger and water
I slip down, giving way to downward pressure,
Moving fast to swallow me whole.
How scary is this darkness and the sinking--
What fear is provoked in the heart of a child to be swallowed up!
Fear leaves its image upon us, like a permanent tattoo,
Like a searing brand proving ownership.
Please share this with anyone you know. Forward to friends, share on Facebook, tweet and retweet. There are lots of organizations whose mission is to end the stigma around mental health issues. A particularly great page is http://notalone.nami.org. There are some courageous stories here of real people experiencing psychological pain.
I don't really like the term "mental illness" because it implies pathology or disease, and it's not always helpful to label our experience that way. One of the hallmarks of the counseling profession is our uniquely developmental and strengths-based perspective. Counseling grew from the need for career guidance in the early part of the 20th century when wartime in America shifted its workforce needs. The earliest counselors helped people find what they're really good and enjoyed, and encouraged them to follow that career path. This emphasis on the clients' assets and how they can become productive members of society continues to inform our profession today.
My own story reflects this. I've experienced depression, discouragement, ill health from lack of self-care, family issues, etc. Because others have helped me find encouragement and recognition of my strengths, I (most days) am lifted above depression to find my vessel of energy to bloom and Flourish...
I feel like there's a racetrack in my house sometimes. We have a sort-of circular floor plan, and if I counted the times I've rushed from my dining room through my bedroom through my office into the kitchen and around again, I'd be in the tens of thousands I bet. Sometimes I feel exhausted with all the rushing and the to-do list that seems to only get longer.
I've noticed I'm usually rushing because of a need to move something, provide something, respond to something, or take a break from something.
Move, provide, respond, take a break...isn't that what's entailed in a busy life? Let's explore more.
There are lots of demands for movement at some point most days, right? Gotta roll out of bed in the morning, stretch the legs, shower up, walk out the door to the car or bus or train...GET SOMEWHERE. For those of us that work a lot at home, especially with kids, we may have instant demands to start moving, especially when they are kicking us in the bed or crying at 5am.
There's alot of physical movement required most days, but there's also the moving of things from one place to another. I find myself constantly taking my kids' things from one part of the house back to their room, things I'd just put away the day before! But here they are again... my daughter's hairbrush on my desk, my son's slingshot on my bed, an upturned bag of those tiny rubber bands for making bracelets in the kitchen floor. Ugh! Won't things ever be in their right place, and just stay there? No they won't, because people and things constantly move (and that, in and of itself is not a bad thing.)
So, I could definitely putter around my house all day putting things back where they go, but I'd get nothing truly important done. So I have to be ok with a bit of a mess. I have to be content with things out of place, and without order in every corner of the house. I have to let movement be graceful and come from a true need, rather than an obsessive desire to get somewhere, put things somewhere, or control my environment. I have to find balance between moving and being still. I have to find stillness when the urge to move will distract me from what is really important.
Sometimes the being busy comes from the need to give, to create, to deliver, to provide something. Whether it's a meal, a service, a phone call, a lesson, a document, or anything else, the pull towards giving can easily become unmanageable. Because what happens when you don't live up to a demand to provide something??....GUILT, that's what. It really should be a four letter word, this most tricky emotion!
Here's the mental commentary we may experience:
"I gotta provide what is being asked of me...or what I expect of myself...but I'm exhausted from all this moving and doing...I need a break...if I take a break, I won't be productive...I won't be providing, and how can I possibly live with that?...I can't live with that so I keep giving and providing."
It's a self-defeating cycle of feeling unworthy. So when you feel the need to keep on providing, take a moment of self-awareness to inventory what you've already done. Whether it's doing the laundry, making lunch for a loved one, writing a paper, seeing a client, completing a project, or anything else, acknowledge it and give yourself gratitude. Even if no one else says thanks, you can give thanks to yourself.
Have you gotten those emails yet?
What about those voice mails?
Can you stop what you're doing real quick and answer a question?
The trickiest part of multi-tasking is responding to the needs of others. We not only have to know what's on the to-do list and work on it, we also have to juggle the things that come up in the midst of an already packed day. We have to decipher what is important and what can wait. Who needs immediate attention and who will be ok until later today or tomorrow? And if we do stop and respond, how in the world do we get back where we left off? Especially if we were really in a good flow and accomplishing things. Is it even possible to get the momentum back if I stop and respond?
It's no wonder our brains hurt and we get headaches with all the mental work it takes to handle multiple demands.
When you're multi-tasking, do you even realize you're doing it? Next time you feel overwhelmed, stop everything you're doing and name all the tasks on your mind at that moment. Write them down or make a star next to them on your to-do list. If you have more than two or three, and especially if they are complicated tasks, it's time for a new approach. Otherwise, you'll spend time moving between tasks and not making progress rather than wholly focusing on one or another.
Prioritizing is key. If you don't know what's most important, ask yourself. "If this task isn't done tomorrow, will someone critical in my life be disappointed?" If the answer is no, then it can wait. You can also ask, "Can I accept my efforts today even if this is not done tomorrow?" If the answer is yes, it can wait.
4. Take a break....
Ahhh, that's just what will help when all the moving, providing, and responding becomes too much. Getting away for a quiet moment, taking a walk, gazing out the window, grabbing a snack, locking ourselves in the bathroom for a moment or two...it helps right?
It sure does, but it's hard to get a break most of the time. Sometimes we don't get to choose when to take a break, we just have to snag it when the opportunity arises. It's critical to seize those opportunities and to savor quiet and stillness. Will you allow yourself to be still, even while the to do list looms, the phone rings, the iphone dings, or someone calls your name? Cultivating stillness in the midst of activity is part of what yoga can teach us. That's why I use yoga in counseling, because it helps calm nerves, ease fears, and see the beauty of the moment.
The bottom line is that all of this moving, providing, and responding is important. It's what keeps us connected to the external world, with all of its beauty and all of its chaos. It's what keeps our social connections healthy, and our communities fertile. We just have to learn to be still within all the movement.
Kambria Kennedy-Dominguez, Counselor and yoga teacher specializing in mental health, substance abuse and wellness.