Archive for the month “June, 2013”

At Disneyland with Tonsillitis

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Unable to sleep at night, anxious with anticipation, I was days away from my first trip to Disneyland at age 8. Then, a day prior, I woke up with tonsillitis. I didn’t tell my parents because I wasn’t about to miss out on the Magical Kingdom. Although my throat was on fire, the pain was more tolerable when I walked through the gates and into the make believe world full of characters I had only seen on TV on Saturday morning.

Pain—whether emotional or physical—is often with us throughout our lives and we often tolerate discomfort by focusing on something external similar to my childhood trip to Disneyland. As adults, this is often a materialistic reward—a new dress, piece of furniture, a vacation or a new car.

As we age into oldest years, both emotional and physical pain from illness, loss of independence and death of loved ones surrounds us each day. Tolerating these injustices by looking forward to diversions is more difficult as we are limited in what we can do or experience.  We can’t plan a day at the park or a visit to a friend if we don’t have transportation. We can’t “buy” our way out of pain if we are on a fixed income.

Yet, according to research, while most older adults will admit to multiple illnesses or physical limitations, they also claim to be happy and in good health. Why is that? Fortunately, for most, they have given up the false comforts of materialism and instead, they enjoy reflecting upon an inner strength that allows them to live in a state of hope and purpose that helps them tolerate pain. Many older adults and researchers refer to this inner strength as spirituality.

Spirituality for some is about a structured religious experience; others reflect on their inner strength that comes from a God that they have defined; others look to nature to provide meaning; and for others, their inner joy and healing may come from the experience of their creative selves.

In working with the oldest old and I am touched by the heroic efforts to mitigate the pain and loss that is present for most. Their simple, pure expression of spirituality gives joy, hope and purpose. We all have the opportunity to call upon this strength but it requires a conscious exploration of what spirituality means to each of us individually.

Often, we find the time to explore our inner strength only when the artificial diversions that come from a materialistic life are removed. No Disneyland, no trip to the mall, no trip to the Caribbean; just the quiet to explore the strength within.

~ Susan

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TRIPS, POPCORN AND MOVIES FOR PARENTS!

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When I began looking at assisted living homes for my 92-year old dad, I found some amazing places offering game rooms, ice-cream parlors, all-day popcorn machines, opportunities for group trips to casinos and even cruises. Wow. I was ready to move in myself.

Most of the large and/or chain assisted living or continuing-care homes have well-paid marketing specialists who realize that their target audience is often the adult children of older adults. These adult children are often active Boomers who, themselves, would enjoy having a full schedule of activities available.

It’s hard, at any age, to think of those much younger or much older than we are so we think about what it’s like for us and apply those feelings and thoughts to our parents.

I try to remind myself that at 64, I don’t want, need or enjoy many of the accouterments of a 35-year old. I would hate for my 35-year-old son to define my lifestyle through his personal perspective of what brings him joy and purpose.

If it’s necessary for your parents to move into some type of assisted living, consider bringing in an objective third party such as a Geriatric Care Manager experienced in working with elders. Then, with this objective third party, you and your parent(s) can explore what environment truly supports an empowering and purposeful daily life. Many, particularly when over 85, prefer a smaller environment that is better supported in adult foster care or, if at all possible, additional help so that they can “age in place” in their home.

 

 

5 Ways to Shake Up a Caregiving Rut

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Are you feeling exhausted, stressed out, guilty or plain fed-up about caring for an elder? Often when a caregiver is frustrated, so is the elder. Stop doing what you are doing that isn’t working and consider SHAKING IT UP!

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Elder: As we age in to the oldest old years it becomes a time of loss. Elders lose friends, physical abilities, independence, dignity and seemingly anything resembling control. Everyone else thinks they know what’s best for them and often do not bother to ask for the elder’s opinion. Decisions from the unimportant issues like when they may want a bath or what they want to eat to the big life changes like taking away a driver’s license or deciding where they want to live. These choices become dependent on other’s availability or needs rather than the desires of the elder.  Often days are filled with an abundance of time to focus on not feeling well, medication concerns or side effects, next doctor’s appointments, boredom, and how to get some more attention from whom ever can fit you in to their busy schedules. It’s no wonder elders have a reputation for being cranky. Depression and suicide rates are high in the elderly. White males over 80 have the highest suicide rates in the elder population. National Institute Mental Health reports, “Depressive disorder is not a normal part of aging. Emotional experiences of sadness, grief, response to loss, and temporary “blue” moods are normal. Persistent depression that interferes significantly with ability to function is not.” The problem with negative feelings in the brain is when we dwell in negative thoughts we have more negative thoughts, so disruption in the situational sadness may help those with normal mood changes become more engaged.

 

Caregiver: Maybe you love the person you care for, maybe you don’t, but either way you are the one in the trenches doing the work. If you’re lucky you have support from other family and friends, but then again they may be causing a lot of the stress involved in caring for an elder. But still, each day you roll up your sleeves and do it all from errands and medical visits to cleaning backsides and dirty dishes, only to get up and do it all again tomorrow. If you are a long distance caregiver you spend twice as much money as a local caregiver trying to support your elder and panic every time the phone rings, not to mention the struggle with guilt that you want to be with your elder more; or guilt because you are happy to be with them less. You hear about self-care and how important it is, but you are baffled by who has time when your head is down and you are just trying to get through the day, week, and month! Possibly you are part of the sandwich group who have several generations you are caring for at home and another job outside the home.

Does any of this resemble what is unfolding for you in your caregiving journey? Well you are in a very large club. In 2012, 15.4 million family and friends provided 17.5 billion hours of unpaid care to those with Alzheimer’s and other dementias alone. Eighty percent of care provided in the community

is delivered by unpaid caregivers. and the majority of caregivers are women over 45. With numbers like these, being in a caregiver’s rut could be the next national health hazard!

 

So how do we shake it up, find the silver linings or just simply do it different? Let’s begin with deconstructing the pattern…

 

  1. Dialogue ~ look at the routine you have when talking with an elder. Is it utilitarian habit or are you engaged in meaningful conversations? Do you talk to them as a petulant child or cower every time they raise their opinion? Communication tools can go a long way here. If the elder you care for has cognitive disorders, watch some of Teepa Snow’s http://teepasnow.com/wp/ training videos on communication skills for elders with dementia and Alzheimer’s disease or catch one of her talks locally (see her website for details). Some very basic changes can make a world of difference. For mentally healthy elders, communication tools are still very useful. Lifelong patterns over the family life course can make it difficult to change patterns but there are tools to help. Activities that create new ways of talking can be around the elder’s need to share stories. Engage in storytelling tools and activities at a level the person can handle. From computers, journaling, genealogy research or simply inquisitively chatting over a bath or over the phone can make a mundane activity more of an adventure. Elders have a need to tell their stories over and over as a way of processing their lives as time here grows shorter. This is where the details of life live and this rich activity will yield pearls for you as well as the elder.
  2. Outings ~ A friend recently told me that upon visiting her parents a few months ago in another state she took them out for a drive. Her father barely ambulatory and her mother prone to falls were thrilled to be going out. On this journey she surprised them and took them to their favorite Jazz Club where they went when they were younger. She enlisted the help of a waiter and got them situated in the back of the room. As the music played on she said she could see the years melt away and their younger selves emerge. For 3 hours they enjoyed a part of life that had been lost to them. They have a code name now for when she comes to visit so that other family members do not know what they are up to on these outings. How empowering! This could not have been an easy outing for my friend, but it gave her immense pleasure and changed her parent’s outlook completely. If this is too adventurous for your elder perhaps just a drive around town; or closer to home set up a Skype session with an old friend, do some snail mail letter writing or perhaps engage in a beloved hobby like baking where they can sit close by and “teach” you a favorite recipe. If your elder has cognitive issues, setting the table, walking through the garden, folding laundry, or dancing all become enjoyable new adventures. Don’t give into the usual routine; Shake It Up so it is fun for you as well. Portland has a beautiful Alzheimer’s memory garden where you can take your elder (http://www.portlandmemorygarden.org/PMG/Welcome.html).
  3. Self Care ~ OK we are diving in the deep end now. Funds are low, time is scarce and what is self care anyway? Simply put it is a change of environment to recharge your batteries. Connect with the spiritual side by gardening, taking a labyrinth walk, attending church or joining a choir or painting class. Identify something that brings personal joy and fulfillment for a few minutes a day and a few hours a week and a few days a month. No one will give you permission to enjoy something without regard for others, so you must be strong enough to go for it without permission from anyone but yourself. Typically caregivers put themselves last, which makes you the worst advocate for your own selfcare. By putting yourself last, you will likely have less patience and unlikely to find joy in your caregiving role. Magical things happen when you practice self care. Perhaps your biggest challenge is getting a good night’s sleep. If you can afford it, hire a professional caregiver to come in 2 nights a week so you know you will get some relief. If you are long distance, hire a Geriatric Care Manager to pop in and check on your elder and/or his care givers every week or month. If funds are tight, barter with friends to come spend the night in exchange for a homemade pie or watching their elder or child during the day. Get creative and reach out to local support groups and social services that will allow you the time you need when you need it. If you schedule it on the calendar it will happen. There are some ways to combine self care with your care giving activities. Give your elder a sacred foot massage and make a ritual of lighting a candle and using lotion or oil with a scent like lavender or chamomile. Then if the elder is able have them do the same to you. If you can afford to have someone come in and give you both foot massages then make it a weekly or monthly routine. There are many massage therapists who will come to your home. My favorites are Sister Emma at the Franciscan Center in Milwaukie, Oregon (503-794-8542) or Sister Delores at St. Mary’s in Beaverton (503- 944-9641). The important thing is to schedule the time and make sure it happens. Have someone come in for one day a week and you decide what you feel like doing that day. The answer may be nothing or a nap. That is OK! Learning to ask for help is the biggest challenge for caregivers. Do it, you will be surprised where the help comes from. You will be surprised once a routine is in place how your relationship with your elder improves. They may protest at first or even always when you leave them, but the benefits will come.
  4. Empowerment ~ it can be exhausting making decisions for another human being. Too often feelings of guilt or inadequacy flood in even when you are doing just fine. Know that nothing in the world is perfect and you simply being there is an amazing gift. The rest is all gravy. To help cope with the times it can be emotionally overwhelming, try learning a few mindfulness techniques. Our local psycho-therapist Donald Altman (http://www.mindfulpractices.com/) has some great tools for breathing and meditation that can help when things get stressful for you or if your elder is in a funk. Space cannot always be achieved physically, so having techniques to navigate through these times is priceless. These tools can be used by your elder as well. One of the best methods to decreasing your decision fatigue is by giving back some of the responsibility to the elder. Depending on your situation, the answer may be a modified version, but honoring their level of ability to give an opinion can go along way for both of you. Give your elder decision making power whenever possible. You are there to keep them safe. There are also local classes available designed by Legacy Health for Caregiver Help. This course is offered in many places from senior centers, hospitals, and even at the Franciscan Spiritual Center. The course is designed to teach you about community resources, care strategies, support group and self care. All great ideas to Shake Up your current routine.
  5. The Unexpected ~ If you haven’t already, begin building a support network: Online, in-person or host a weekly meeting in your home. Whatever you have to do to be with others going through the same important work you are doing. It is too common to become isolated with an elder. This is not good for you or them. Have some social activities in the home even if your elder does not engage. The presence of others can be soothing or annoying, so be aware of the best format for your situation. Online could be a great way to support long distance caregivers, start a facebook group and open it up for members. As life unfolds with your elder health challenges may increase, a need for hospice may arrive, or a medical need for a move into a nursing home or rehab center may happen. All of these situations can create crisis and stress for the caregiver and elder alike. Having medical, social, and caregiver support nets in-place can make the transitions easier. Our Geriatric Care Manager services can also be part of this safety net, there to pull the resources together to make sure the decisions for your elder are coordinated and serve the elder’s best interest through advocacy and care planning. Our website also offers tools and resources to help with these transitions www.FiresideCMG.com

 

As we advance in life it becomes more and more difficult, but in fighting the

difficulties the inmost strength of the heart is developed.

                                                                           – Vincent van Gogh

 

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