Ontario Health Coaltiion

2017 Pre-Budget Briefing Note

In a speech April 13 to the Empire Club, Ontario Finance Minister Charles Sousa reported that in every corner of Ontario he heard from residents, civic leaders and businesses that health care and public hospitals are top priority issues, and he promised significant investments in this year’s budget. These increases will follow a decade of cuts to public hospital funding. The following is a briefing note on the key issues:

Hospitals

Public hospital funding has increased by the rate of inflation in this current year (2% for base operating funding, with an additional 1% for larger more specialized hospitals' specialized programs). This is the first time since 2006 that hospitals have received funding increases to meet inflation (inflation is running at approx. 2%), and it has come after the longest stretch of real-dollar hospital cuts in Ontario's history. For nine consecutive years, hospital funding was less than the rate of inflation. For four consecutive years it was frozen at 0% increases, thereby falling even further behind. Our campaigns pushed the government to make the funding increases to meet inflation this year. This is a major change in policy that has resulted from years of hard work, for which we should take credit.

However, this increase is not enough to keep pace with population growth, ageing and utilization (demand for care).

There is a deep consensus that Ontario needs ‎a 5 percent increase in hospital funding to maintain existing programs. We will applaud a significant increase in hospital funding this year -- if it is close to 5 percent -- and we will measure it against the needed 5 percent. But we will also note that after 9 years of cuts, we are still behind. Ontario's public hospitals have lost many needed beds and services. If the Ontario government does turn the corner on the cuts, we will lead with a message of support, note that they are finally responding to public pressure that considers these services to be a priority in every community, and we will focus our message on what is needed going forward:

Stable multi-year public hospital funding that meets inflation, population growth, ageing and utilization rates. Years of cuts, followed by a give-back just prior to an election is poor policy and has been deeply damaging to our community's hospitals. This funding cannot be for one year only. We need a commitment going forward to stable, multi-year funding that is enough to maintain services and rebuild capacity.

An evidence-based plan to rebuild public hospital capacity to meet population need for care. Ontario has the fewest hospital beds, nurses and staff of any province and patients are suffering as a result. Ontario needs to restore cut beds and services.

A moratorium on cuts, costly mergers and restructuring that take money away from care, and privatization.

Long-term care

For years, the Ontario government has increased long-term care funding by 2% per year. This is a basic inflationary increase but it does not cover the higher care needs of the increasingly complex residents in long-term care homes. Today, virtually all residents that are admitted into long-term care homes rank at the highest measures of acuity (care needs). But care levels have not increased to match the increasing acuity of the residents. Families, residents and staff alike have all identified this as the top issue of concern. There are also huge wait lists for long-term care, numbering more than 20,000, and these wait lists have persisted for more than two decades.

In this sector, the competing demands are between the for-profit nursing home industry, on one hand, and public interest advocates on the other. The for-profits routinely lobby for ever more money that goes into their profit-taking funding envelopes -- accommodation and renovations/buildings (the accommodation fees paid by residents and government and the physical buildings that are assets owned for the profit of the nursing home companies). The non-profit long-term care homes have supported the call for improved care levels and focus their lobbying efforts on these. In long-term care, we are working with other public interest groups for improved care levels to meet the needs of the residents. To do this, we are calling for a regulated minimum care standard of 4-hours of hands-on care per resident per day on average and the funding to support this. The funding and the regulation go hand-in-hand. We would not want to see more funding going to profit. In this sector, dramatically increasing acuity (complexity and high needs) among residents means that more care is needed, but it is not being provided, and residents, families and care staff are put at risk as a result.

Home and community care

Re. Home and community care: these sectors are going through restructuring as the Community Care Access Centres - the bodies that govern home nursing, health professionals' services such as physiotherapy at home and home personal support (CCACs) -- are closed this month and their services and staff (minus approx 4 senior managers per CCAC) are moved to the LHINS. This sector has received 5 percent increases in recent years, but due to the contracting out and for-profit privatization of home care, significant funding does not make it to care. The problem in this sector is privatization and contracting out that has created redundancies takes funding away from patient care. This sector needs fundamental reform. We are supporting the community sector's call for strong regulations to stop for-profit privatization. We are also calling for the establishment of public non-profit home care.

Privatization

With the closure of the CCACs this month and the shift of home and community care to the regional health authority (Local Health Integration Networks that are responsible for funding and organizing health care in each of 14 regions across Ontario -- LHINs), non-profit community care agencies have sounded the alarm about the threat of expanding privatization of community care through the LHINs. The government has so far refused to bring in a regulation that would clearly stop the expansion of for-profit privatization in community care. The Ontario Health Coalition is demanding not just that privatization be stopped, but that it be rolled back.

With the release of the 2015 Ontario Auditor General's report, all justifications for the P3 privatization of new hospitals were stripped away. Ontario’s government must stop the P3 privatization of public infrastructure projects including hospitals, and put the billions in savings that result towards needed care and services. The Auditor General found $8 billion in higher costs due to the P3 privatization of Ontario’s hospitals and other public infrastructure. The privatized P3 program means that new hospitals are so expensive that for each one new hospital they are planning, they are now planning to close down two or three entire hospitals or more. This privatization is shrinking needed hospital services for decades to come. We will work hard to make this a key election issue.

BY CAROL BRADLEY BURSACK

Many people would consider losing their sight one of the worst potential losses that they could encounter. While most of us will not suffer from complete blindness, millions currently suffer from some form of visual impairment, with numbers growing rapidly as we age.

According to the National Eye Institute (NEI), older adults represent the majority of the visually impaired population, with visual impairment included among the 10 most prevalent causes of disability in the U.S.

In a quest to discover methods of managing sight problems, I first contacted Pris Rogers, program manager of VisionAware.org.

VisionAware.org is the website for the American Foundation for the Blind (AFB). This website helps people who are new to sight impairment as well as their caregivers. According to Pris, caregivers are often just as confused and overwhelmed, not knowing where to turn or what to suggest.

"Even though many older adults have overcome an array of problems during their lives, when they receive a diagnosis of this loss, they may believe that there is no way that they can cope with this, since it affects almost all of daily life," Pris remarks. "Often, the doctor has given them a diagnosis but has had nothing to offer in terms of where the individual can turn for help to live with effective eyesight loss."

"But caregivers and persons with visual impairment need to know that there is indeed hope, and life, after vision loss," Pris says. "A wide range of services are available that can enable adults who are blind or have low eyesight to continue living independently. The term ‘vision rehabilitation' includes highly trained professionals and comprehensive services that can restore function after great impairment, just as physical therapy restores function after a stroke or other injury."

10 Tips for Low-Vision Living

Good lighting is key: Keep rooms well lit. Use nightlights in bedrooms, hallways and the bath at night.

Eliminate clutter: Return things to the same place. Try using a basket to store keys, TV remotes and other items.

Remove hazards: Coffee tables, throw rugs or electrical cords can present a tripping hazard.

Use contrasting colors in the house: This can make your doorways, stairs, and furniture easier to see.

Use contrasting colors in the kitchen: For example, a white board for slicing red apples; a dark board for onions.

Mark appliance controls: Use tactile dots or raised markings.

Use contrasting colors in the bathroom: Towels, washcloths, and bath mats that contrast sharply with the tub and tiles.

Identify medications accurately: Use large print, tactile labels or talking prescription bottles. Or check with your pharmacist to find out about talking medication devices that are available now in many drug stores.

Make it easier to tell time: Find out about talking and large numeral clocks, watches, calculators, and other devices.

Reinvent the reading process: Check into large print books, audio books, smart phone apps, and magnification devices such as video magnifiers in portable and desktop versions.

Pris also suggests that people go to Visionaware.org for more tips.

Insight from an Ophthalmologist

Charles P. Wilkinson, M.D., ophthalmologist and chair of EyeCare America, provides additional insight for low vision management from his medical perspective.

See your ophthalmologist. The American Academy of Ophthalmology recommends seniors age 65 and older get a dilated medical eye exam every one to two years, or as recommended by their ophthalmologist—a medical doctor specializing in the diagnosis, medical and surgical treatment of eye diseases and conditions. During an eye exam, your ophthalmologist does more than assess your eyesight. He or she also assesses the health of your eye and identifies any eye diseases and conditions. Additionally, new glasses may be able to help, even if there are other problems or conditions, such as cataracts.

Make things bigger. Sit closer to the television or to the stage at performances. Get large books, phone dials and playing cards. Carry magnifiers for help with menus, prescription bottles and price tags.

Make things brighter. Make sure areas are well-lit and cover shiny surfaces to reduce glare. Consider increasing color contrasts as well. For instance, drink coffee from a white mug and always use a felt-tipped pen with black ink.

Use technology. Many of today's newer technologies have applications that can help with low eyesight. For example, e-readers allow users to adjust the font size and contrast. Many smartphones and tablets can also be used to magnify print, identify cash bills and provide voice-navigated directions.

Organize and label. Designate spots for your keys, wallet and frequently used items in your refrigerator. Mark thermostats and dials with high contrast markers from a fabric store; label medications with markers or rubber bands; and safety-pin labels onto similarly colored clothing to tell them apart.

Participate. Do not isolate yourself. Keep your social group, volunteer job, or golf game. It might require lighting, large print cards, a magnifier, a ride or someone to watch your golf ball. Ask for the help you need.

Eat for your eyes. Try to consume a diet high in citrus fruits, dark green leafy vegetables, nuts, whole grains, vegetable oils and cold-water fish. These are packed with nutrients that support your eyes.

Exercise regularly. Even gentler exercise, such as walking, yoga or stretching can be effective in promoting good blood circulation and oxygen intake—two things our eyes need!

Quit smoking. Not only is it good for your body, it is also good for your eyes. This decision is one of the best investments you can make in your long-term health.

Wear your shades. Regardless of the season, wearing sunglasses with at least 99 percent UV protection helps protect your eyes from damage.

Consider low vision rehabilitation. If your eyesight is failing, you can greatly improve your quality of life through vision rehabilitation, which teaches you how to use your remaining sight more effectively. Talk with your ophthalmologist if low vision rehabilitation is right for you.

How caregivers can help

Losing eyesight is often so subtle, it may not be apparent to those whose vision is getting worse. 

Squinting or tilting the head when trying to focus,

Knocking objects over,

Discontinuing everyday activities such as reading or writing,

Missing objects when reaching for them,

Falling or stepping hesitantly, or

An increase in "dings" on the car.

Encourage open and honest communication. Some people with low vision experience hallucinations known as Charles Bonnet Syndrome. This is often confused with dementia, but is very different and is harmless. Let your loved ones know they can talk to you if something seems to be amiss.

Millions of aging boomers wonder if their memory lapses are from normal aging, or a sign that they are developing Alzheimer’s. There’s some basis for the worry. According to the Alzheimer’s Association, more than 5 million people in the U.S. are living with it. One in three seniors will die with Alzheimer’s or another type of dementia.

While these statistics are scary, you shouldn't let them cloud the reality that many of us will age normally and will not develop AD, or any other type of dementia. Certainly, we will have some memory changes as we age. Improvements in our lifestyle may help mitigate some of those. Other changes we’ll just have to live with. So what is normal memory loss and when should we worry?

What if you momentarily forgot an old friend's name? What if it routinely takes time to remember where you left your car keys, or your glasses? Are these glitches something to be worried about?

In most cases, no.

This is likely the effect of normal aging. Just as the rest of the body ages, so does the brain. Recall may slow down. You may not be able to juggle as many things at once and still do them well. You are likely to be more easily distracted. The “tip of the tongue” syndrome, forgetting why you went into a room, forgetting where you last left an object -- these are all common occurrences with age and aren’t normally something to be concerned about.

The best way to defend against severe age-related memory loss is the same way you defend physical abilities: keeping your mind and body active will help both.

In fact, during the latest International Alzheimer’s Conference, researchers stressed that challenging work is one of our greatest defenses against not just memory loss but even Alzheimer’s disease. The studies underscored the old saying: “use it or lose it.”

If you’re 60-years-old will your memory be as quick as it was when you were 20? Not likely. However, you have decades of experience to draw on, so your wisdom will contribute to your decision making skills which may actually make you more prepared to navigate life.

Unless your memory issues disrupt your life so significantly that they are more than simply frustrating, it’s unlikely you’re developing dementia. On the other hand, if your problems make you fearful or are preventing you from living your life in a normal manner, you may have something to be concerned about.

In that case you should have a good physical exam so that your doctor can discover and treat reversible symptoms of dementia. These issues can include medication side effects, thyroid problems, infections, a vitamin B12 deficiency and more. Don’t panic, but do get checked out.

If you are physically okay, but still have frequent memory issues as opposed to occasional glitches, this could be a sign of something called mild cognitive impairment (MCI). If this is the case, you may want to seek an evaluation just to test where you are cognitively, because a large percentage of people with MCI eventually do develop Alzheimer’s. Early diagnosis could help you cope with this in a more productive way.

How to evaluate yourself at home

A convenient tool to help you decide whether you should seek help is available free on the Ohio State University website. Called the Self-Administered Gerocognitive Exam (SAGE), the test is designed to detect early signs of cognitive, memory or thinking impairments. You can take the test on your computer in about 15 minutes.

The bottom line is that what you are experiencing is likely normal memory loss unless it is disrupting your life.

However, if you truly are concerned, make certain that there aren’t any potentially reversible reasons for your brain fog or forgetfulness. Next, you may want to take the SAGE test just so you are more informed. Remember, it’s free and private. If you are still concerned, see a neurologist or a dementia specialist of some type to determine if you have MCI or are actually on the road to dementia.

You may find this last step scary, but if you are truly worried, it’s by far better to know what is happening than to struggle going forward into the unknown. Alzheimer’s can’t yet be cured but assistance for planning and care is available.

Hillsdale Estates Offers an Adult Day Program!

A support service that provides supervised programming for adults living with dementia, in order to assist them in achieving and maintaining their maxiunm level of functioning. The program also provides respite and information for the cargivers.

Mission

Provide a community that embraces excellence in person-centered care

We Offer Participants the Opportunity

• To socialize and benefit from peer support in a stimulating environment.
• To participate in programs that are designed to focus on the individual person and their abilities and strengths.
• To remain involved in recreational activities of their choice.

 We Offer Caregivers the Opportunity

• To well-deserved respote, so theu can relax and enjoy some personal time, knowing their loved on is well cared for.
• For support, education and linkages to community services.

Choosing a Care Facility? Listen To Your Gut

Carol Bradley Bursack, Minding Our Elders 

People often ask what to look for when choosing an assisted living facility or a nursing home for a loved one. There are grading sites such as the Medicare Nursing Home Guide, found on Medicare.gov, and I suggest you use them. However, there are many things that go into good care that can’t be measured on a chart. In order to see the heart of a facility, you need to spend some time there. Observe routines and pay attention to the atmosphere. What is your gut feeling about the place?

Do you feel that the staff members respect one another? If you notice that the people who give your loved ones the most hands-on care – the Certified Nursing Assistants (CNAs) – are treated with respect by the nurses and other professionals in the facility, you are likely visiting a good home. If the hands-on caregivers, who aren’t often well-paid, at least receive respect for their work and are treated as professionals in their own right, there is more chance of job satisfaction. Job satisfaction can translate into better care for your loved one.

People smiling at one another, sharing a laugh or helping out even if something isn’t “their job” can be a tip off as to the way the staff works together. This is not to say everyone will always be jolly. Nursing home staff work very hard and must cope with frustrating and heartbreaking situations on a daily basis. Still, you’ll get a general feel if there is some sort of fellowship among those hard at work.

Consistent assignment is something else to consider. As you question staff members about services, ask if the CNAs are consistently assigned to the same group of residents so that the staff and the residents get to really know each other. If so, you are likely looking at a quality facility.

Consider how the staff interacts with the residents. Do you get a feeling that they genuinely care about their residents or does it seem like they are just doing a pretty basic job? Do they get down to eye level with the residents in wheelchairs when they communicate? Do they look residents in the eyes when they smile at them or address them? Do they smile often? Give a tender pat on the arm or a hug?

How do they handle difficult resident behavior? Do they have the patience and training to correctly distract and redirect people who are agitated? Have they been trained in the validation method? Validation of the individual, no matter how outrageous a comment or action may be, can be vital to the self-esteem of an elder, so that is an important element, particularly in good dementia care.

You may not be able to witness enough life at a facility to answer all of these questions to your satisfaction, but keep them in mind as you observe. You’ll get a better feel for the care home.

Location has much to do with our choices in our review of care facilities and often we have to choose among less than perfect options. It may help ease your mind if you check with the long-term care ombudsman for the location you are considering. Go online to www.ltcombudsman.org. Then, type in the Zip code of the assisted living or nursing home. Here you’ll find contact information for the ombudsman. Contact this person and ask whether or not there have been a significant number of complaints about the facility you are considering.

If the general atmosphere of the care home seems depressing or fearful, you might consider looking elsewhere even if official ratings are good and there have been no major complaints. Conversely, if you get a good feeling when you are around the staff, question the administrator if the Medicare Nursing Home Guide or another resource shows less than desirable ratings for the home. There may be a good explanation for a slip in numbers at a particular time.

In the end, it’s about balance. You want a facility that is clean, safe, serves good food and is medically sound. However, you also want one where the caregivers enjoy the care receivers and each other. That is the intangible factor. That’s where you need to trust your instinct and listen to your gut.

Compassion Fatigue: When Caregivers Go Beyond Burnout

Most long-term caregivers have times where the fatigue and frequent frustration of providing care for a vulnerable person can border on burnout. Even though I’ve handled caring for multiple elders’ situations reasonably well, there have been times when I’ve wondered how much longer I could keep it up.

Those times have come dangerously close to burnout, but I have always moved through them with a focus on faith and self-care. Since my darkest days, however, I’ve learned that there is another stage that exists beyond burnout—one that can be extremely scary. This stage is called compassion fatigue.

Many readers have had feelings similar to mine. Some have even told me that they feel they have progressed beyond burnout. In the interest of helping these readers, and clarifying how a somewhat common feeling of caregiver burnout can turn into compassion fatigue, I looked for assistance. After some research, I contacted Christine M. Valentin, a Licensed Clinical Social worker in New York City and the state of New Jersey and asked her to educate all of us about burnout and compassion fatigue.

Christine has a Master’s Degree in Social Work. For the last six years, she's owned a private counseling practice where she works with adults who are experiencing anxiety related to work, relationships, family, multiple sclerosis and/or caring for a loved one with Alzheimer's disease. Prior to her private practice, she worked for six years with older adults and family caregivers in various non-profit organizations in NYC.

CBB: Christine, as I mentioned above, I’ve read about compassion fatigue and heard it sometimes used interchangeably with caregiver burnout. Can you please explain what this phenomenon actually is?

CMV: Compassion fatigue is an extreme state of great tension and stress that can result in feelings of hopelessness, indifference, pessimism and overall disinterest in other people's issues.

With regard to caregivers, this can manifest through actions like yelling, hitting or neglecting a loved one. Basically, any action that is not characteristic of the caregiver’s typical behavior but is now present and consistent could be considered a result of this condition.

While some may simplify and attribute this change in behavior to frustration and/or resentment, it is important to understand that this is not something that occurs overnight. It is the cumulative result of days, weeks, months and years of managing caregiving responsibilities that are often unrecognized, seemingly endless, emotionally demanding and physically exhausting. As a result, it is not uncommon for feelings of frustration, resentment, hopelessness, guilt and/or a diminished sense of self to manifest.

CBB: How do long-term caregivers who are close to or already experiencing burnout avoid reaching an even more dire state?

CMV: Being proactive is one of the best ways to combat this or at least prevent it from getting out of hand. First and foremost, be aware of the warning signs:

Feeling overwhelmed, exhausted and drained

Not wanting to be around your loved one (choosing to work late, daydreaming about no longer having to care for them, etc.)

A decrease in patience and tolerance

Angry outbursts that are uncharacteristic of your behavior

CBB: Being aware of the changes in your behavior is obviously the first step toward preventing compassion fatigue. What comes next?

CMV: The next step is to begin making yourself a priority and tend to, at the very least, some of your needs. While many caregivers feel this is impossible to do, it is important to understand that if you don't make time for yourself, no one else will.

Therefore, allocate at the very least five minutes each day to eat, pray, dance, laugh, walk, sing, read an inspirational quote, meditate, chat with a friend, the list can go on and on. My point is to give yourself a mental and physical break from actively caring for a loved one. The ability to do so in small bursts can allow you to begin the practice of adequately caring for yourself and hopefully get you to increase these efforts moving forward.

CBB: What else would you suggest?

CMV: Having a non-judgmental outlet to express your thoughts can also be beneficial. Outlets like writing in a personal journal, talking with a confidant, or seeking advice from a healthcare professional can help you with processing your feelings and offer a safe place to release pent up thoughts and emotions.

CBB: What if a reader is experiencing what they now recognize may be compassion fatigue?

CMV: If you find yourself already experiencing these feelings and symptoms, then let others know and seek professional help. Believing the feelings will not subside, especially while you are still actively caring for a loved one, can cause some individuals to become depressed, develop panic attacks and/or potentially put their loved one in harm's way.

CBB: Thank you for clarifying this for us Christine. Readers can get more information about you and your services on your website.

From my point of view, the courageous caregivers who comment on the Agingcare forum, as well as in other groups about caregiver stress and burnout, need to take especially aggressive steps to take care of themselves to avoid these emotional and physical complications. Seeking professional help could be a good approach even for burnout, but seems to be necessary when caregivers reach the more advanced stage where their feelings lean toward compassion fatigue. Practicing proactive self-care is as beneficial for the care receiver as it is for the caregiver.

http://www.agingcare.com/Articles/compassion-fatigue-caring-too-much-196224.htm

Do brain games make a difference in staving off brain diseases such as Alzheimer’s or are they just harmless fun? While studies have been all over the map on this issue during the last few years, lately they indicate that at least formal brain training may help, which indicates to me that well designed informal brain training would have at least some validity. The National Institute on Aging (NIA) has this to say:

“Formal cognitive training...seems to have benefits. In the Advanced Cognitive Training for Independent and Vital Elderly (ACTIVE) trial, for example, healthy adults 65 and older participated in 10 sessions of memory training, reasoning training, or processing-speed training…These improvements persisted 10 years after the training was complete.”

I’ve never enjoyed games. I am, however, rarely without two or three books, including fiction and non-fiction, by my side. Therefore, I’ve was personally gratified when further down in the NIA article the scientists say that “...Intellectually stimulating activities may also reduce the risk of Alzheimer’s…ordinary activities like listening to the radio, reading newspapers, playing puzzle games, and visiting museums... “ can help keep the brain healthy.

Most likely, a variety of brain activity is best, but my view is that if we don’t enjoy what we are doing we won’t do it, so we should find something that we enjoy and carry it though. For me that is reading, although I will try to be open to more variety.

What is the takeaway – for now?

Studies have shown that most any type of mental enrichment is useful for at least staving off the symptoms of Alzheimer’s if not preventing the disease. Brain games certainly fall into that category. So would reading books and newspapers, playing a musical instrument or creating a work of art. It seems likely that maintaining brain health falls into a category similar to maintaining heart health. In both cases, we either use it or we lose it.

Just as with physical exercise, something is better than nothing. Walking is better than sitting. Reading the newspaper is better than watching TV. Anything that requires us to exert some effort, mental or physical, is bound to be helpful to our overall health.

Article by Carol Bradley Bursack, Minding Our Elders

Empathy Leads to Compassion Then Joy for the Alzheimer's Caregiver

The role of empathy in dementia care.

I am sitting here thinking about the role of empathy in dementia care.

How does empathy apply in the carer - caree model?

Empathy I believe starts with understanding.

Learning how to understand how a person who is deeply forgetful might be feeling at any given point in time.

This includes being sensitive to the actions that might be taken, and the cause effect of these actions.

The caregiver begins to acquire empathy by asking how, why, what. How is the person who is deeply forgetful feeling? Why is the person who is deeply forgetful acting this way? What do they need?

The only way the caregiver can come to understanding and then empathy is by looking at the world out of the eyes of the person who is living with Alzheimer's or the other types of dementia.

All to often, we spend our time telling others how we feel. We the caregivers.

We spend our time describing the actions of the deeply forgetful to others. Then relate how we feel.

The act of "venting" or "complaining" is negative. This negativity adds to our burden.

On the other hand, when we begin to examine the words, actions, and acts of the deeply forgetful we slowly come to the understand that because of the changes in their brain they perceive the world differently at times then we, the caregivers, perceive the world.

Some caregivers come to believe that the person who is deeply forgetful is not the person they "knew". It does not seem apparent to them that the person they "know" is changing. This change is being caused by the effect of dementia on the brain.

This change is not being caused by any intentional acts on the part of the person living with Alzheimer's. This change is being caused by illness. Not because the person who is deeply forgetful has intentionally decided to change, and change for the worse.

The first step in effective caregiving is to acquire empathy based on how the person you are caring for perceives and views the world. How? Why? What?

The next step is the coming to an understanding that dementia is the culprit; not the person who is acting differently because of the effect of the dementia.

Empathy and understanding lead to compassion.

Compassion diffuses much of the burden a caregiver might feel. Leading to new, different, and more positive feelings.

It is at this point that we can turn our attention to our mission -- caring.

Caring for someone is never really easy. It if often trying, and often difficult.

However, caring can be tremendously fulfilling. Emotionally and spiritually uplifting.

Empathy and compassion married with love make caregiving meaningful and joyful, not burdensome.

Article by Bob DeMarco

January 6, 2016 

My life is an amazing one on so many levels.

On one hand, I have two amazing children. I know I am a little prejudice, but they are my life, and I am one proud mamma. I have a home in a nice neighborhood. I am alive and healthy. My children are healthy. My parents are still alive and help as much as they can. I have friends and neighbors who help often. I have food and electricity. I have a job I love and the start of a new career. I have a good life.

Then there is the other hand.

I have a husband with Younger Onset Alzheimer’s Disease and he is declining at a pretty quick clip. I am now a single mother and feel the weight on my shoulders daily to figure out our future and to sit close by and watch helplessly as Jim changes from a strong, confident and capable man to a person who doesn’t know his wife or children and drools all over himself.

The contrast between my two lives is stark. So much to be happy and grateful for yet so much to be heartbroken and angry about.

I must work through my mind each day the many blessings I have. I must force myself to focus on the gifts we are given by those we know and those we don’t. I make a conscience effort to remind myself and our children how very lucky we are for all that we have.

Some days this comes easier than others.

When I visit Jim and see the changes that let me know the disease is progressing, I take mental notes. I don’t comment to him. I don’t cry in front of him. I take it all in. Then I speak to the staff and I leave.

I usually make it all the way to the car before I let go.

It is there, in the privacy and quiet of my vehicle I can release the anger, the fear, the heartache. But only if the kids aren’t with me. Then I just get really quiet and try to wait until I am alone. Sometimes this doesn’t happen for a while and those feelings get pushed deep down inside of me. That is when I end up having a really, really good cry. I have to hope that it doesn’t force its way out when I am not ready or not in an appropriate setting.

No matter, eventually, all of those bottled up feelings come back out. They can’t stay in. Letting go every once in a while releases stress, releases the hurt and the bitterness.

And when I am wrapping up my pity party, my mind always turns to those things for which I am and should be thankful. The friends. The help. The love. The kindness. The memories. There is and always will be a battle between what is gone and what we still have. Looking for the rainbow in the midst of the storm brings a sunshine from within that nothing can dimmer.

Text from http://www.helpforalzheimersfamilies.com/2016/01/Finding-the-Rainbow-Within

Family members are often uncertain about the protocol for visiting their loved ones at an assisted living community or skilled nursing facility. They may wonder when, how long and how often should they visit, and what they should do when there. Every situation is different, but these tips and guidelines can help make the time spent visiting a loved one as pleasant and worthwhile as possible.

Visit Protocol: When and How Long Should You Visit

The first thing to do is to check with the community or facility where your loved one is residing to see if there are preferred times for visitors. For instance, you may want to avoid mealtimes or specific activity times. Frequently mid-mornings or mid-afternoons work out best since these may be the less regimented parts of the day.

The days of the week that you visit may be more dependent upon your own availability and convenience than that of your loved one’s. If your loved one seems to crave routine and predictability, it might be best to visit on the same days each week, as well as at a predictable time of day.

The length of your visit may be dependent upon your loved one’s physical and mental stamina. If you live nearby and can visit several times a week, then an hour is probably a good guideline. If you have to travel a greater distance and can only visit once a week or less, then you may wish to plan on a visit of a couple hours or longer. Check with the facility to see if you can make arrangements to eat lunch or dinner with your loved one. Or as an alternative, you can bring a cake or other dessert to share, especially if it’s a special occasion like a birthday or holiday.

Avoiding a “Guilt Trip”

Visiting your loved one regularly is certainly preferable than sporadic visits, especially if your loved one is prone to such mood disorders as feeling lonely and depressed without seeing you or other family members. In fact, research shows that social interaction has great benefits for the elderly.

However, visiting more than once or twice a week can be difficult if you are leading a busy life that includes work and raising children. If the assisted living community or skilled nursing facility has a caring and attentive staff and offers a full slate of social activities to keep its residents occupied, your loved one should be in good hands on the days that you don’t visit.

Don’t feel guilty or let your loved one lay a guilt trip on you for not visiting more often. Remain calm and explain that you’re doing the best you can and try to make the visit as pleasant as possible. If you are unable to visit as much as your loved one would like, coordinate with other family members (your siblings, your grown children, nieces, nephews, etc.) and friends on creating a regular schedule of visits to keep your loved one’s spirits up.

What You Should Do When Visiting

What you do in a visit depends upon the loved one’s cognitive and physical condition. Typically it’s best not to make the visit too overwhelming or overstimulating. If you plan to bring young children along, make sure they understand to keep their voices down and to be calm around their grandparent.

Have a plan of what to do or talk about before you arrive. Perhaps bring a gift, such as a framed photograph or homemade artwork, which may in itself prompt discussion or reminiscing. If conversation is difficult for your loved one, have a plan for other activities to do together. You can play a board game, read aloud from a favorite book, or watch a DVD together. If your loved one’s mobility permits it, you can take a walk together around the grounds. If your loved one is wheelchair bound, take the wheelchair on an outdoor path (weather permitting, of course) and comment about the trees, gardens, birds or other natural elements in your surroundings.

Sometimes just being with your loved one is enough. Holding your mother’s hand or sitting together with your dad as you watch a favorite TV program can be a meaningful experience for the two of you. The main point of your visit is to be there for your loved one. What you do is secondary to the fact that you cared enough to be there and share precious time together.

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