THE CAREGIVERS' LIVING ROOM - A Blog by Donna Thomson.+Add.Feed Info1000FOLLOWERS
Donna is the Special Advisor for Caregiving at Tyze Personal Networks and is a Senior Advisor to the PLAN Institute for Caring Citizenship. Donna extensively writes for magazines on the topics of family caregiving.
Once in a while in the life of a caregiver, the chance of a few days away from home reveals itself. A respite break might come from a community care home or it might be arranged with the help of family and friends who have offered to stay with a loved one for a few days.
But time away might seem inconceivable when we are the only knowledge keepers of our loved ones' habits, medications and preferences. Training someone new to come in for a few days seems like a gargantuan task that might be more bother than it's worth.
It doesn't have to be that hard. If you DO have an option to take a break, plan it carefully to ensure that both you and your loved one will actually relax and enjoy the refreshment of change.
1) Ease your loved one into the idea of your break slowly. If your respite plans include a stay at a care home, visit a few times before you leave and extend the time with each visit. Explore the facility and introduce your loved one to staff. Engage in an activity together there with other residents, if you can. If your plans include someone else staying at home with your loved one, ensure that everyone knows each other well before your holiday. This might mean a few home visits and even an outing together.
2) Write out a care plan and keep paper copies at home as well as online (for easy access multiple ways). Include the following information:
Address and Telephone
Date of Birth and Health Card #, Social Security #, Insurance Information
Physician names and contacts
Diagnoses and current medications with times and doses
Recent health history (if there are any recent illnesses or ongoing health concerns
A day/night outline of routine activities
A calendar of planned activities while you are away
A list of likes/dislikes including food preferences, TV shows, etc.
3) Make a plan of how and when you are going to keep in touch with 'home' while away. You may ask carers to update you via email once a day - make sure you list the type of information you want reported. You may wish to know about your loved one's mood, or what they ate. Don't assume that carers will know what to tell you - they won't unless they're told. Think about how often you would like to call or skype home to speak with your loved one or their carer. A call plan will mean you can relax, knowing that your loved one can be reassured that you will call at a certain time. Or, you may decide that you prefer to speak with your loved one and his/her carer only in a case of emergency. The goal is to make arrangements that are planned and that are designed to ease stress.
4) Keep a photo journal of your time away to share with your loved one when you get home so that you can relive your holiday and share it with your loved one, emphasizing that he/she helped to give you a break.
There are so many barriers for caregivers to access respite. Family and friends may not be willing or equipped to step in. Residential care may not be an option. A loved one with Alzheimer's may suffer too much from change in routine, or a non-speaking child with developmental disabilities may be too vulnerable to place in the care of others. Nevertheless, having these plans in place (or at least thinking about them) will put you in a better position if you ever HAVE to leave home suddenly. And for those caregivers who CAN get away for a break, hopefully these tips will make a holiday more relaxing.
Last year, the US Providers Association for Home Health & Hospice Agencies (PAHHHA) designated the third Friday in February as National Caregiver Day. This year, that's today - February 16! The intention was to create a national occasion similar to Mother's Day - one day in the year when Caregivers are thanked and feted. So today, share this post with friends and family. Today is the day when everyone says THANK YOU for all you do.
You won't receive any cards or cakes for National Caregiver Day. You won't be handed a box of chocolates or a new diamond ring either. If you did, you would have made it or bought it and wrapped it yourself.
That's the thing about caregiving, it's for someone else, usually someone we love. And that's because caregivers learn, over time, how to derive deep satisfaction from a smile, a meal eaten by our loved one, washed hair, calmed anxieties and memories shared. We don't need gifts of chocolates or diamond jewellery to understand how our loving acts are needed and hopefully appreciated (although we'd never turn down those earthly gifts, of course!).
National Caregiving Day is an opportunity to reflect on the meaning of our caring lives and to thank ourselves, not for being perfect, but for being the best caregivers we know how to be. (And to thank another caregiver, too!) National Caregiving Day is a chance to celebrate the nobility in our daily lives. Because we are noble - more noble than bankers, clerks, lawyers, sales reps, even teachers and police officers. Ours is the most noble work and all those working professionals know that their most noble work happens at home, with family. Caregiving is the core of what is most meaningful in life - our most intimate relations with those we love who are vulnerable and need our care. Caregiving teaches us all life's most important lessons. Eventually, after years of giving care, we become wise elders - that is our reward, and it's a rich one.
I always keep my eyes and ears open for news about devices that ease our burden of care while ensuring our loved ones are safe from harm. Today it's my pleasure to host this guest post by Sarah Jackson on just that topic!
As more people live longer and remain active into later life, they also face a variety of safety issues. The changing dynamic between older adults and consumer markets has produced a new and growing industry that focuses on senior safety tools, products and services.
At home or in care facilities, families, and senior caregivers have access to improved resources designed to ensure the safety of older adults — protecting them from falls, accidents, and other emergencies. Better safety leads to enhanced quality of life and more enjoyment for seniors, regardless of where they live.
Five Tools Every Caregiver Should Be Using
The senior safety industry includes a wide-range of services from home care to personal monitoring. Among the many new products, the top five that anyone in the senior safety industry should be using include:
1. Wearable Technology – from bracelets to socks and shoes, wearable technology that tracks movement, detects a fall, and monitors other functions should be the number one resource to implement in a care plan.
2. Medical Alert Monitoring – with GPS options, instantaneous two-way communication, and live video, medical alert monitoring advancements are both practical and comforting.
3. Senior-Friendly Kitchens – automatic shut-offs, “talk-back” technology, induction cook tops, and other new kitchen products make the most dangerous room in the house safe and functional.
4. Slip Resistant Devices – from bathmats to carpets, slip-resistant aids help prevent the number one safety risk for seniors — falls.
5. Interactive Devices – whether its medication management, health monitoring, or companionship needs in the middle of the night, easy-to-use tablets and monitors designed for senior homes are a valuable tool for immediate remote communication.
Understand the Market
Technology advances rapidly. What was innovative yesterday is obsolete today. The same is true for the senior safety industry.
Monitoring the market and being familiar with products, services, and manufacturers is the best way to choose and maintain the tools that fit every individual circumstance. The tools and devices that provide comfort and security in one home, may not be necessary in another.
Among the many services available in the developing elderly safety industry are personal consultants. Professionals can evaluate, identify, and advise older adults, family members, and caregivers on what tools would make the most difference in each home situation.
Use the Tools Effectively
Taking advantage of the many new products and improvements in senior safety technology will ultimately lead to increased comfort, greater independence, and more time for both older adults and their caregivers. Being a caregiver is often challenging, but ensuring that seniors have a safe and manageable home environment is easier when the right tools are available.
Sarah Jackson is a senior care professional. Her knowledge and experience ensure that elders obtain quality care and transitional preparation for their future.
A couple of years ago I met an amazing doctor. I was speaking at the American Academy of Cerebral Palsy and Developmental Medicine conference in Fort Lauderdale and after my remarks, a gentle but insistent man approached me saying, "Hello, my name is Jim Plews-Ogan. I'm a pediatrician specializing in complex care and I am really, really interested in what you said about kindness." These are the words from my speech that drew Dr. Plews-Ogan to me:
"Over the years of Nick's many hospitalizations and clinic appointments, I don’t recall ever once anyone asking me, “What do you believe is happening to your son? How do you feel about your treatment choices? How can we support you now, given Nicholas’ realities?” I do remember saying, “I need you to be kind to me; I really need that.” In my way, I was pleading for a compassionate, honest conversation that would enable us to examine each other’s understanding of where we were as a team with Nicholas’ treatment and where we were likely to go. I wasn’t seeking certainty; I was seeking honesty, reassurance and kindness."
Jim Plews-Ogan teaches the importance of kindness in care to medical students at the University of Virginia and he blogs about his work HERE. Jim and I have kept up a friendship based on our shared interest in how kindness can be manifested to patients and their families in health care. His work inspired me to ask families on my social media networks this question: What does kindness in health care look like? I asked families to tell me their stories about when medical professionals showed exceptional, personal kindness and how that compassionate care made a difference in their ability to manage very difficult circumstances of illness or disability. The response was incredible. Within four hours, 57 caregivers had responded. I was in tears reading these moving accounts of extraordinary kindness.
1. "I remember when my (adult) daughter had been in the hospital for 9 days and I was scared and exhausted. She was taken out of her room for tests and I started to weep: I had held it in for so long not wanting her to see my worry. Her busy busy nurse walked by the room and saw me crying. She came in and silently held me for about five minutes while I cried. So much beyond her call of duty, and so beautiful."
2. "We were visiting the NICU where my girls were born, after receiving the CP diagnosis. One of the neonatologists who had been a part of our journey since my twins' delivery noticed that her shoe was undone so he picked her up, put her on his lap and tied her shoe. It was honestly the cutest and still means so much."
3. "My daughter had some persistent respiratory challenges that kept escalating; and as a result she had a surgery cancelled on multiple occasions because we couldn't get her breathing stabilized. After 6 months of this, I emailed the specialist in desperation on a Saturday night because my daughter was still wheezing significantly and I was going to have to cancel surgery again. Well, he called me back within 1/2 an hour of emailing (from his home), reassured me that we would find a way to make the surgery happen, contacted all her specialists, got a medication plan and reserved an ICU bed...then followed up with me and got her in for a check-up just before surgery to make sure our plan had worked. Which it did... He then danced with my daughter at her follow-up appointment. I will never, ever forget his kindness."
4. "My son was in the ICU for a long time. We developed an amazing relationship with one doctor in particular. On rounds one day she asked the group of residents if they thought my son was retaining water. After a few residents tried to answer, she interjected and said "why don't you ask mom." She respected us and valued our opinion. She used the moment to teach the future generation how to value parents. This to me was real kindness."
5. "I have one with my “typically developing” daughter, L. She was about 3 at the time, making J (her complex sister) about 1.5. I had taken L. out for a walk and she fell on the concrete. She landed on her elbow. She immediately started babying it, but I could tell nothing major was happening. Still, she insisted on going to the hospital. Because she had seen how I would drop everything to take J. to the ER, generally because of lung infections/pneumonia. I kept telling L. she was fine. When she wasn’t buying that, I prepared her saying that we’d be at Emerg FOR HOURS. She was still adamant she needed to go. I went to triage and said “Listen. I think my daughter is fine but she sees me drop everything to take her sister to the hospital on almost a bi-weekly basis. I just need someone to prove that I’m willing to do the same for her as I do for her sister. I have told her that we’re going to be here for hours so please make us wait”. The doc overheard what I was doing and took us almost immediately. Checked her elbow and made sure everything was ok and it was just a bruise. Then wrote her a script for 24 hrs of ice cream and cuddle time on the couch. He applauded me for how I handled it and wished other parents would do the same. I said I felt like I was abusing the system. But frankly, L never asked to go to the doc again until she actually broke her arm at the end of grade 2."
6. "My daughters first kiss came from her primary NICU Nurse. As my daughter was born at 25 weeks keeping her free from infection was my top priority I was so afraid to even breathe around my daughter never mind kissing her. I will never forget that exact moment she leaned over and kissed the top of her head. That sweet moment reminded me what the importance of being a Mom was even though it came with risks."
7. "I think that we find little acts of kindness all around us, every day. My youngest makes it so very easy. The IV nurse that danced along with his favourite song (and he still looks forward to seeing him), the child life specialist that walked an important DVD down to us in the ER from the ward, the volunteer that got us TWO mats to play on in our ward room, the nurse that brought me water and cookies because leaving the room to get something to eat was too scary, the birthday banner put on a room door and signed by staff overnight. Not very grand gestures but they make the world of difference."
8. And from the daughter of her elderly mother in hospice: "When an over worked, stressed out hospice nurse was inappropriately cheerful and made some silly comments and carelessly caused some minor pain to my dying mother, I was at the end of my wits and just sobbed at her thoughtlessness. Another nurse, seeing my reaction and sadness, hugged me and comforted me in the moment and then later explained that the hurt the other nurse had caused had not been intentional and explained a bit about that nurse to me. She didn’t excuse her actions but she explained some of that nurse's normally exceptional caring qualities to me without demeaning her fellow caregiver. It really eased and comforted me so that I was able to come away from the whole episode with a different perspective but still acknowledge that my upset was valid and understandable. I was even able to include the problem nurse in my individual thank you’s to all the nurses that had been so good to both my mother and myself at that tremendously heartbreaking time in our lives. The whole experience was truly remarkable."
9. "The male student nurse who gently washed my daughters hair after hip surgery. He was on his break."
These are only a few examples of the many and exceptionally moving examples of kindness in health care that were shared online. From these, I've learned that medical professionals can be kind in their actions and words by:
Acknowledging that family caregivers are experts and care providers
Going 'above and beyond' in their efforts to REASSURE and offer HOPE - and they do it OFTEN
Allow and enable ACCESS to complex care caregivers via email or phone (believe me, we do not abuse this access - we only contact health care professionals for advice when we REALLY need it) Dr. Plews-Ogan teaches this by example to his students - has been doing house calls for his patients throughout his 30 year career in medicine
Offer TOUCH (hand holding, hugs to both caregivers and to our loved ones - see experience #1 above)
Offer FOOD (cups of tea, for example)
Offer RESPITE (when staff notice that we are exhausted and offer to sit with our loved one so we can get a break)
HUMANIZE our loved ones by marking occasions such as birthdays, ceremonies for palliative patients, etc.
PALLIATIVE care professionals seem to know best how to deliver care with exceptional kindness. Other disciplines in health can learn from them.
These are just a few of the ways that health care professionals offer kindness to patients every day. I will be sharing all the responses I've received with Dr. Plews-Ogan. He will share them in turn with his medical students. And I'm thrilled to add that kindness is in the news today with the announcement of an exciting new book The Power of Kindness by Dr. Brian Goldman. Dr. Goldman is an emergency room physician and the host of the wonderful White Coat, Black Art on CBC radio. I never miss an episode.
Thank you to every doctor, nurse, social worker, personal support worker or therapist who has offered kindness in care to patients. We deeply appreciate it and we are stronger for it.
Today I was speaking with another caregiver. We were talking about trauma.
My friend's Mom has been progressively losing skills due to a degenerative disease. It wasn't just the disappearing abilities that hurt my friend, it was the numbness she felt herself. Here's how she described what happened yesterday. "Mom's been using a power wheelchair to get to the dining room where she lives in assisted living. But recently, she's become unsafe driving it - she's running into walls and people. So yesterday, I took it away. I did it mechanically, I just felt numb. This was a BIG deal and I didn't feel anything. But I went home and I realized that I should be hurting for Mom. I hate this. I hate being numb. I LOVE my Mom."
I've experienced numbness in my caregiving life and I'm betting that most other long-term carers of loved ones with chronic disease or disability have experienced it too. I decided to ask my niece Christina Opolko about this symptom of stress and exhaustion. Christina is a licensed drama therapist and is highly trained in trauma response therapy. Here's what she said:
"I think as traumatic moments and major traumas accumulate, they become something called complex trauma. Over time, when the body goes into overwhelm, some people train themselves to override their feelings (sometimes called 'functional freeze') in order to keep functioning. This is a symptom of complex trauma. Over time, this can lead to loss of identity, inability to claim space beyond the caregiving role, and a near constant anxiety regarding self and other, without a clear root cause....the cause has been cumulative. So I think the cause of feeling numb is complex trauma, overriding one's emotions and, I would add, forced accommodation. In trauma, if you are forced to accommodate constantly to someone's needs, there is a needs imbalance, and over time, it too can feel like trauma. The body cannot distinguish trauma from shutting your needs down to serve another under stressful circumstances. The two feel the same. The neurophysiological response is the same in both extreme stress and in suppressing your needs in order to attend another." I might add one more cause: hyper-vigilance over a long period of time. Hyper-vigilance in order to avoid dangerous and life-threatening consequences of an illness or disability can lead to 'shutting down' one's emotions, in my experience. Being on high alert for the sake of someone's life and limb is a good reason to use whatever coping mechanisms are at hand, even emotional numbing.
So, how can burnt out caregivers get their feelings back? Christina advises two strategies to begin. The first is called 'interoception' - it simply means being aware of your body in a purposeful way, the same as in yoga, mindfulness meditation or Tai Chi. The idea is to become more acutely aware of how the sensations in our bodies influence the thoughts in our heads. The second strategy that Christina is reaching out for support - to a medical professional, family, friends, or online. Seeking support may seem like a trite or even useless suggestion to caregivers whose emotional range has flatlined. "What's the point of talking to anyone?" could well be a symptom of being overwhelmed by a sense of futility.
Is emotional numbing a good coping mechanism? Maybe sometimes, it can be. But mostly (in my experience), it is better to cry, much better. And my worry that if I started to cry, I would never stop was unfounded. I cried, yes, but then I stopped and I carried on. We all do. I reclaimed my feelings by asking myself, "What do I feel right now? Where are my muscles tight? Where are they relaxed? How does this orange taste in my mouth? Which muscles move when I swallow?" And I reached out to my family, my friends and my fellow caregivers. For me, nature was and is a great healer, too. Being in my garden, walking in the woods, even standing at the window looking at the rain all heal my heart and soul making me MORE emotional, ready to sense my body and especially the bodies and emotions of those I love.
Christina recommended that I watch this video about healing trauma from Dr. Peter Levine. If you recognize yourself in this description of trauma experience, I urge you to watch it too.
Nature's Lessons in Healing Trauma: An Introduction to Somatic Experiencing® (SE™) - YouTube
PS: Deb, long-time complex disability Mom who is also a reader on the Caregivers' Living Room Facebook page posted the comment below. It is so beautiful, true and poignant. I just had to share. Thank you for your wisdom, Deb.
This article is bang on for me. I have been caring for my complex needs son for 30 years and the "hyper vigilance" over repeated crises, hospitalizations and just day-to-day monitoring of his medical instability have forced me to help us both survive through accommodation. I have definitely totally shut down my own needs yet, strangely, what I thought I needed before has evolved into a new and, not that awful, "extreme living in the present." If anything, I have a completely different perspective on what really makes a life and what we are able to accomplish under duress. Perhaps we are all heading toward that eventually and I am just getting there faster? It doesn't even seem like futility or numbness any more. It's more like entering a new sphere with different rules of engagement.....
Recently, a friend and I railed at how homeless people on the street are ignored. "What kind of a society do we live in where we step over another human being lying on the sidewalk?" she demanded. I visualised myself on the street, seeing a human shape huddled under a blanket in a doorway. Then, I see myself turning away and hurrying by, afraid to speak.
"What stops me from making eye contact or from speaking to a homeless person?" I wondered as I shifted in my chair. "Alright", I thought, "If I did stop and say hello, what exactly would I say? Excuse me, Sir... or.... May I help you? (do they look as if they need 'help'?) or.... Would you like something to eat? (I don't want to accompany this person to a restaurant, I'm on my way to an appointment!) Oh, forget it. I don't know what to say." So, in my mind, I keep walking.
I've been thinking a lot about the language of giving and receiving care. It's so difficult - maybe we've forgotten it? Did we ever have it, or do we need to invent a new language of expressing need and gratitude?
I've begun to think about the purpose of our language in caregiving. I think it's dignity that must drive our search for the language of care and most often, dignity can be equated to contribution. Everyone wants to feel useful and to have the opportunity for being empowered to act, even if their physical or mental capacities are very diminished. So perhaps, it's 'enabled independence' that we strive for in our caring relationships.
If we want to help someone be independent (even if they need assistance to get through much of the day), what are some ways of offering help? Perhaps the first way is to be silent and observe closely. Is your loved one struggling to do something? Is that the moment to ask, "Want some help with that?" Next time that task comes up, does it seem appropriate to mention, "I saw in a magazine recently these really nice sweaters with zippers instead of buttons. I'll pick one up for you to try, but in the meantime, I could help with these buttons - they are so annoyingly tiny!"
Facilitating people to be independent with dignity is time consuming work of the human heart. Caregivers know perfectly well that it's much quicker and easier to just do the task for the person while prattling on about a different topic in order to distract 'the patient'. And there may be times when that is necessary, but can't we be honest about it? Our loved ones deserve the dignity of an honest exchange during their care activities.
Offering assistance when it's unwelcome can be tricky. Sometimes, "I'm here if you'd like a hand with that" can result in watching in painful silence while a loved one tries and fails to manage eating a bowl of soup from a spoon held in a trembling hand. If inserting dignity into the situation, rather than dealing with the mess (or eating the soup) is the objective, perhaps it's not so hard. Make the soup texture the common enemy - "look at how they make the soup so runny these days! It's probably a cost cutting measure. Let's see what's in the fridge - maybe we can use that soup as a base for stew. Mashed potatoes here we come!" Because dignity is the objective and enabled autonomy is the means to the end, the words come out in ways that are conspiratorial, empathetic, light-hearted and conversational.
But, what about asking for help for ourselves? The blog post on this site with greatest number of views (almost 16,000) is 'Saying I'm Fine When I'm Not'. We all have lots of good reasons for not wanting to answer anything but "I'm fine" when someone asks how we are doing. We may believe (correctly) that someone else would never understand the nature of our care challenges. We might believe that by saying "I'm not fine, we need help at home" seems like a betrayal of your loved one or simply a declaration of personal failure. But, what if we thought of this moment as an invitation for another person to contribute - in a way that will make them feel good while it helps you? When conversation begins to flow naturally, and we find the words to be honest and the patience to listen, we experience the relief that a truthful conversation can bring. In this space, offers can be made, opportunities for giving and taking can be accepted - or not. The thought "You would never understand" morphs into the spoken words "we would really appreciate a meal one night next week - whatever night works for you, just let me know."
I still don't know how to begin a conversation with a homeless person I've never met. I don't know how I would end that conversation, if I ever did manage to begin. The language of care is very tricky and fraught with emotion. But one thing that my gut tells is right: we must begin with love and dignity. Perhaps the words will follow.
If you have ever been in the same room with your loved one and a health care professional, you'll know that it's disorienting. I say that because it's like going to the principal's office, or having a business meeting when what you really want to do is have tea and a fire in the grate to cosy up for a long chat about what hurts. You want to have your health care needs met in the context of comfort and family, not a sterile lab.
So today, I want to address health care providers - all of them - to suggest some ways that we can be cared for and still have family around us.
The first rule for home care workers should be to ask themselves, "How can I help this family do the things they would like to do in their normal way?" Professional health care aides should be prepared to take on a role of a 'shadow person' in the household, alert to what might need to be done, but watchful for cues to fit in to either a boisterous home or a bookish one. I'll never forget the time a caregiver friend told me that a personal support worker had complained to her nursing agency that my friend and her family 'laughed too loud'. When I heard that, I wondered whether it was ever possible to be entirely yourself in your own home if you needed professional care support.
How can a family still be a family when one of its own is acutely ill? The fact is, everyone fares better (including the patient) when families are allowed to care for each other. Family centred care is a concept that bandied about by hospital staff all the time. On the ward, caregivers can experience family centred care like 'family do-it-yourself care'. In a system that is over-taxed and under-staffed, hospitals may prefer to leave feeding the patient and even changing his sheets to a loved one who is holding vigil. But what can hospital staff do to welcome families and support them in a joint healing venture? By offering them a cup of tea, making clear that family washrooms are nearby, not on another floor. By acknowledging the family care role by making hospital parking free. By assuring family caregivers that special attention will be paid to their loved during caregiver breaks for meals and respite. By providing chairs at the bedside and a comfortable cot for overnights if a patient is very ill or particularly vulnerable.
Paid staff at long term care institutions may cling to strict routines in order to avoid chaotic disruptions of medication or physical care schedules. Families visiting residents may threaten those routines. Telling families how they can help staff by caring for a patient in a health care institution may be akin to admitting failure or incompetence, so families end up being discouraged from helping a loved one to eat, get dressed or move about. Family members may want to visit and they may want to continue giving care to a loved one in order to preserve intimacy and the integrity of long-standing relationships. So, what can managers and front line staff of long-term care facilities do to welcome families? They can have a chat about what role the family would like to take with their loved one. They can offer to be most supportive but least restrictive to enable family gatherings. That means if the family wants to bring special food for a party, routines are adjusted for that. If family members would like to visit at a mealtime, they are welcomed to join the residents.
I think families do belong in health care. But I don't know that all health care providers agree that we do. What I can guarantee is that most patients want us there because we provide the comforts of home when we're together. And I also know that we cannot do our family care work unsupported, either at home, in hospital or in long-term care settings.
There are two questions about caring families that interest me. The first is, "How can we plan our days and weeks to give us a better chance of being happy?" The second is, "How can we tell how we're doing with our wellbeing plan?"
If you feel like your life is not your own, that you just get blown and buffeted from crisis to crisis (or one monotonous day just seems like the next), then this blog post's for you. It's time to get intentional about how we live our lives and to do that, we need to think differently about wellbeing. Here are two approaches that can help caregivers influence health and happiness in the family.
1) The Wellness Wheel is a project of Hospice Yukon in Canada. Infused with wisdom of native people in the north, this is a simple way of day planning to ensure your life is balanced between activities of mind, body, spirit and heart.
But how can we use this idea of the self to ensure we nourish all these aspects of the caregiver self? Here's how. Start by choosing just one activity from each domain, every day. See whether there are activities that you can share with your loved one, because they need the benefits of the Wellness Wheel, too.
The second wellbeing approach I'd like to present is called The F-Words in Childhood Disability. This strategy for planning daily life to optimize health and happiness may be from CanChild, a pediatric disability research institute at McMaster University in Canada, but the approach works for anyone. I love it.
Here are the F-words. Think about what they might mean in your life and the life of your loved one, no matter their age or circumstances - these are HUMAN concerns.
Function: refers to what people do - how things are done is not what is important; synonyms include ‘role’, ‘job’, ‘task’, etc. (for children, ‘play’ is their ‘work’)
Family: represents the essential ‘environment’ of all children
Fitness: refers to how children stay physically active, including exercise and other recreational opportunities
Fun: includes particular activities children are involved in or enjoy participating in
Friends: refers to the friendships established with peers; social development is an essential aspect of personhood
Future: is what child development is all about; it refers to parents and children's expectations and dreams for their future
Here's how the F-Words work for youth with disabilities, but consider what they might mean for designing the day (and the week) for someone with Alzheimer's or dementia. Think of how these approaches might change your family life and your wellbeing.
These six F-words won’t fill up your swear jar: What do the F-words mean to youth with impairments? - Vimeo
When your parent was diagnosed with Alzheimer’s disease, you had an important decision to make: Where would your parent live? After discussing it with your family and a medical team, you’ve decided to move them into your house.
That means you will need to make a few changes to the place so your parent is safe and comfortable. Before you do anything, you should better understand what Alzheimer’s means.
Alzheimer’s disease is a neurological condition that can affect older people. The National Institute on Aging explains symptoms tend to appear in the mid-60s, although it can appear as early as the mid-30s. Because it affects the mind, it can lead to problems with memory, cognition, and behavior. Seniors with Alzheimer’s can suffer from a wide range of problems, but the most common include memory loss, impaired judgment, and difficulty with everyday tasks like paying bills or cooking meals.
Perhaps the biggest concern is that there is no cure for the disease. The FDA has approved some medications that help slow the progression of symptoms, but that only happens with about 50% of the seniors taking these prescriptions. The severity of problems coupled with the lack of a cure is why so many families take in a parent with Alzheimer’s disease.
Changing Your Home
Because the symptoms can be severe, you will have to make some changes to your home. The key focus is to improve safety for your parent. Two rooms tend to have the highest chance of accidents: kitchens and bathrooms. That’s why you should work on those first.
When it comes to the kitchen, Dementia Today recommends that you make sure appliances and drawers are clearly marked and easy to use. You may have to label drawers and cabinets in case your parent forgets what is stored inside. The same is true for controls on the stove, microwave, and appliances. You should also make sure you have a smoke alarm in the kitchen and that the batteries inside are changed every season.
For the bathroom, the Mayo Clinic explains that you should install a grab bar in the shower or tub. This helps someone with Alzheimer’s steady themselves in a risky environment. In addition, you should lower the temperature of your water heater. This way, your parent won’t burn themselves by forgetting just how hot the bathroom water can get.
As for the house as a whole, you will want to use proper lighting to make rooms well-lit so it’s easier to maneuver around furniture. Tape down any throw rugs so there’s no chance of slipping on them, and consider installing a home monitoring system that you can view online. This can help you monitor your parent’s safety while you are at work.
Planning For The Future
Unfortunately, Alzheimer’s disease has no cure. That means the symptoms and problems can get progressively worse. While modifying your home can help a lot, you will need to speak to your parent about future. This can range from what other changes to the home need to be made to the uncomfortable talk about end-of-life care.
As the Neptune Society shows, this conversationwill be difficult. But it is also very important to have. First, you want to respect the rights of your parent regarding any arrangements they want. It’s also better to make any such decisions now rather than when there is a crisis. But this talk can also be a great way to bond with your parent and help everyone in your family feel better about the situation. The unknown can create fear, so by having this conversation, everyone can understand what the future will entail.
Get Your Home Ready -->
Becoming your parent’s caregiver is a difficult job. You can make this easier for you and your parent by making a few changes to the home. Label controls and drawers in the kitchen, install a grab bar, and have a conversation about end-of-life arrangements now before the symptoms get worse. This can help everyone involved handle the transition more smoothly.
Thank you, Lydia Chan of http://alzheimerscaregiver.net/ for this informative guest post!
In this recipe, the essence of the caregiver is kept aside, similar to the starter in sour dough bread. This 'starter' will be needed to make and re-make the caregiver into different shapes and sizes as needs for her or him arise.
Recipe for Making A Caregiver
Start with a cool oven, but make sure to the turn temperature up slowly till it's very hot.
When needs arise, tear off a bit of the starter. Mix in: Love for yeast Muscle for flour Determination for salt Creative problem solving for water
Mix by throwing together. Let rise and then make sure that medical and insurance systems punch it down.
Let rise again.
Now, bake at a high temperature till done (remember, this recipe burns easily). Everyone eat - this recipe feeds many!
Start all over again when your loved one transitions to a new level of care.
NB: Remember, when a caregiver's loved one passes away, the starter will be used to bake an entirely different recipe. It will have the same ingredients, but will look very different. Bon appetit.
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