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The Seniority Blog

February 22, 2012

A Zillion Kisses ©2012

By Arlene Uslander

Relaxing on the living room couch after a morning of errands, I stared idly out the   window, admiring the sprawling crab apple tree on my front lawn.  Now in full bloom, it had started out as a scrawny twig thirty-four years ago.

A frail, elderly man and a small child    a blonde, curly haired girl    walked past my window.  The man was tightly clasping the little girl’s hand in the protective, caring way that a grandparent holds onto a young child.  The pair smiled at one another, the old man bending his head; the little girl straining hers upward.  I would have given anything, at that moment, to have a camera close by. (This was before the days of IPOD phones that did everything but prepare dinner and lay out one’s clothes for work for the following day.) The expression of joy that passed between adult and child could have been adequately captured only by a photograph, not by mere words.

 Then they walked on, slowly, ever so slowly.  It was, after all, a hot day, and the old man could not walk very fast.  And, it was, after all, a long street, and the little girl’s legs weren’t long enough to move very fast.  I watched them as they walked, their strides matching perfectly.

I suddenly found myself thinking far back to a similar scene, on another street, in another time, when an old man held a little girl by the hand.  They, too, walked along slowly, sharing special dreams and important secrets, the way only a grandparent and grandchild can.  My grandfather and me.

And I also recall a question one of my sons asked me at about age ten. “How tall was Grandpa?” he wanted to know, while turning the pages of a time worn family album. “Oh, about five feet ten,” I replied.

“Is that all?” my son asked, an incredulous look on his face. “I remember him as being much taller.  To me, Grandpa was a giant!”

When I used to teach school, I was very much aware of how most of the children felt about their grandparents.  I saw the excitement on their faces and heard it in their voices when they told me they were going to sleep over night at Grandma and Grandpa’s.

I heard the fear in a child’s voice when a grandparent was ill and the child didn’t know when or if he or she  would see that grandparent again.

 I saw the tears streaming down cheeks and felt the anguish in hearts when a grandparent died.  I still remember seven year old Jill saying, “When my great-grandpa died, I was so sad: I cried twenty-four Kleenex boxes full of tears.”  Julie, who had recently lost a grandmother and wasn’t about to be outdone by Jill, reported, “And I cried a whole river of tears!”

 Another time when the children were given an assignment to write about whether they would rather travel to the past or the future if they could take a trip in a time machine, I remember Alex writing: “To the past    definitely to the past.  I’d like to travel back to when my grandpa was young so we could do so many fun things together, like playing baseball and running up and down hills.”

When I once asked a first-grade class what a grandparent is, this was one youngster’s definition: “A grandparent is someone with a big, soft lap, a jar full of cookies, and a zillion kisses just for you.”

There are many kinds of love: the love between a man and a woman, between parent and child, between sister and brother, between dear friends.  But I really don’t think there is any kind of love as pure and deep, as unselfish and undemanding– as enduring, and as unconditional — as the love between grandparent and grandchild.

 A zillion kisses, you know, can last a very, very long time, leaving a whole lifetime of warm memories.
Arlene Uslander is the proud grandmother of 4 grandchildren, ages 20, 19, 18, and 5 (from her two sons and their wives). The three older ones are now at the age/stage where the relationship between grandparent and grandchildren is one of friendship as much as anything else. And the 5-year-old, who came along unexpectedly? There is no way to describe the joy he has brought into the lives of Arlene and her husband, Ira. Just no way!!!

Arlene is the author of 16 books, including That’s What Grandparents Are For, an illustrated book of verse celebrating the special bond between grandparents and grandchildren; (she is currently working on a sequel, That’s What Grandchildren Are For), and her latest publication, which she co-authored/edited with Brenda Warneka, is  an award-winning anthology of true inspirational stories entitled: The Mystery of Fate: Common Coincidence or Divine Intervention? Visit her website: www.thefatesite.com    

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February 17, 2012

9 Common Alzheimer’s Myths

Dementia is not a normal part of aging
By Paula Spencer Scott, Caring.com senior editor

Myth 1: “Mom can’t have Alzheimer’s — she remembers all kinds of things.”
Alzheimer’s disease affects newly learned information or recent memories first. Memories of the more distant past — including arcane details such as names and places — may endure for some time. The majority of longer-held memories don’t typically erode noticeably until the middle stage of the disease. That’s why someone recently diagnosed can often recall things in the past quite well.

In addition, an Alzheimer’s patient has good days and bad days, sometimes appearing to improve or to function in a “back to normal” way for short periods. Sufferers also tend to retain basic social skills during the early stages of the disease — including the ability to “rise to the occasion” by doing their best to cover up potentially embarrassing or disruptive signs of the disease, like disorientation or memory loss.

Myth 2: “If you live long enough, you’ll get Alzheimer’s.”
Alzheimer’s and other forms of dementia aren’t an inevitable part of aging. True, almost everyone forgets things occasionally from middle age on. But not everyone develops a brain disorder that affects cognition (thinking ability), including memory, judgment, and eventually personality and behavior — which is what Alzheimer’s is. Millions of people reach their 70s, 80s, and even 90s with good memories and relatively little decline in mental abilities.

Myth 3: “Alzheimer’s only affects the elderly.”
It’s true that the vast majority of people with Alzheimer’s disease are older than 65, including half of all people older than 85. In fact, for each five-year span beyond 65, the percentage of people with the disease doubles, according to the National Institute on Aging. But a particular rare form of the disease, early-onset Alzheimer’s, can affect adults as young as their 30s. It strikes most commonly in the 50s. Early-onset Alzheimer’s disease accounts for only between 5 to 10 percent of the more than 4.5 million Americans with Alzheimer’s.

Myth 4: “Most people with Alzheimer’s are oblivious to their symptoms.”
Typically, those in the early stage of Alzheimer’s disease or other common forms of dementia do realize, at least part of the time, that something’s wrong. (Whether they recognize it as Alzheimer’s is another matter.) Most people with the disorder are aware that they’re experiencing memory lapses, for example, or that they’re starting to have trouble doing certain familiar tasks (following a favorite card game, cooking a particular recipe). Insight varies by individual, and the degree of awareness can shift from day to day.

Depending on their level of awareness and attitude toward correction, people with Alzheimer’s may appreciate being gently told when they make a mistake due to memory loss, disorientation, or another disease symptom. On the other hand, self-awareness of symptoms can make someone frustrated, angry, scared, or socially withdrawn. As the disease progresses and symptoms worsen, awareness of the situation is likely to decline.

Myth 5: “My parent has Alzheimer’s, so I’ll probably get it too.”
Having a parent or sibling with Alzheimer’s does increase your risk for developing the disease compared to someone without a familial link. But it doesn’t mean you’re likely to get it. Family history only increases your risk slightly.

The role of genetics in the development of Alzheimer’s disease is still under investigation. Researchers have identified a “risk gene” called APOE-e4 (apoliprotein E-e4). APOE-e4 is one of three common forms of the APOE-e gene. Everybody inherits some form of that gene. Inheriting APOE-e4 from one or both parents is known to raise the risk of developing Alzheimer’s. But how this works is unknown, and it’s likely other genes are also involved.

Specific forms of Alzheimer’s disease are more likely to run in families: for example, familial Alzheimer’s disease, an early-onset type that accounts for fewer than 10 percent of people with Alzheimer’s. It’s caused by one of several rare gene mutations. More common forms of the disease, those with a “late onset,” however, don’t demonstrate a clear pattern of heredity.

Genetic tests are available that can identify the form of the APOE gene a person has, as well as the known rare gene mutations. A special lab must run these blood tests; a genetic counselor can assess the risks and benefits of testing for the possibility of a disease for which there is no cure. Most doctors don’t recommend routine testing. But you should decide what’s right for the person you’re caring for and her family.

Myth 6: “Alzheimer’s disease is preventable.”
There’s no known way to prevent Alzheimer’s disease because the cause isn’t known. Although researchers are learning more and more about the disease, they haven’t yet identified the reason that brain cells progressively fail. The best you can do is try to reduce your risk.

Purported causes of Alzheimer’s that have been discredited include getting flu shots, having amalgam fillings (the “silver” kind), and exposure to aluminum (such as eating or drinking from aluminum containers). Research is continuing on whether certain people are vulnerable to the presence of metals in food.

Note that having a risk factor doesn’t mean you’ll get the disease. It simply raises the possibility.
Women are more often affected (they also live longer, and the risk increases with age). Obesity, smoking, and alcohol consumption are suspected but aren’t considered strong risk factors.
Aside from advancing age and a genetic link, factors associated with higher risk of developing Alzheimer’s include:

Myth 7: “Dad’s Alzheimer’s will make him an angry and aggressive person, and he will lash out at us eventually.”
It’s a common worry that patients with Alzheimer’s will eventually turn irate or violent. Aggression is less common than you might think, however. It’s not a guaranteed part of one’s experience with the disease. It’s likely that someone with Alzheimer’s or other forms of dementia will feel frustrated or angry at times — perhaps especially when in an unfamiliar environment or when he’s embarrassed — but he may not express those emotions as violent outbursts.

The disease affects people differently. In fact, some people become more reserved or timid as the disease progresses. There are many ways to manage the full gamut of behaviors prompted by the disease.

Myth 8: “Alzheimer’s symptoms are reversible.”
A great deal can be done to treat and manage Alzheimer’s symptoms, slowing the pace of decline and helping someone with the disease retain independence and quality of life for longer than if these things went unattended. This is especially true with an early diagnosis. Possibilities include medications, environmental cues, cognitive therapy, and treatment for related conditions, such as depression.

Ultimately, however, Alzheimer’s is a progressive disease. A person may function fairly well for years in its early stage, or may decline rapidly. But there’s currently no way to reverse its progress or cure it.

Myth 9: “There’s no bright side to an Alzheimer’s diagnosis.”
It would be sugar-coating to suggest that Alzheimer’s is not a particularly difficult disease for the sufferer, the caregiver, or the patient’s family. It progressively robs her of her brain and, in turn, her personality, and it places a considerable emotional, financial, and practical burden on all those providing care. Many people do, however, come to appreciate some positives that can come from this hard situation.

Many adult children, for example, derive deep personal satisfaction and pride from meeting the challenge head-on and making their parents’ last years safe and comfortable. The crisis can be an opportunity to purposefully reconnect and share quiet quality time as a family. Some people realize that “now’s the time,” before a parent’s memory deteriorates further, to record a family history or sit down together and identify the faces in old photographs.

Another silver lining: Alzheimer’s diagnosis often brings together scattered or estranged family members as they work in concert to provide care.

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February 13, 2012

Can We Travel with Parents with Dementia?

Question:

A family caregiver asked…
We’d like to take my parents to Hawaii, their favorite place in the whole world, one last time. They live in an assisted living facility, both have dementia, but they currently go out unescorted for walks. They are registered with Safe Return and we would bring a baby monitor. Can they stay in a condo adjacent to mine?

Answers:

Paula Spencer Scott, senior editor, Caring.com, said…
The answer is…maybe. Traveling with someone who has dementia requires being aware of many different factors. You’ve already thought about wandering, for example, which is wise. The biggest factor is your parents’ condition. They may do all right with care and supervision, especially if they function relatively independently now. However, travel — especially long distances and by air — can be a major stressor, and stress can worsen dementia. One or both of your parents may become confused, upset, or show more memory loss than previously. If you do go, be sure to have seats together on the plane and remain with your parents constantly. A separate hotel room is probably not the safest idea; a suite with only one door is ideal. Another consideration is your parents’ reaction to such a trip: Do they seem genuinely excited? If they can’t remember plans for such a vacation from visit to visit, it may be simpler to spend lower-key time closer to home with them. You have to weigh your expectations and memories for this kind of family trip with where they are now and how they might respond to it.

littlesister said…
Think about the comfort level of two sets of people – your family and your parents. Talk to them. Do they sound enthusiastic about the trip? Are they comfortable with staying in a new place? How nervous are you for their well-being and safety? If everyone seems onboard, go for it! One suggestion I have is to explore lodging options. Perhaps instead of staying in separate condos, get one big enough for everyone so that you’d be likely to hear them if there was a problem. Another option is staying in a hotel suite. The pricing may be comparable to renting two separate condos, yet offer a better opportunity for support and supervision without compromising too much privacy.

mattie88 said…
We took my mom in a wheelchair with many needs on multiple trips. She had dementia and depression. I took an aide with me to help with care so I could enjoy my time too. It was wonderful and I have many memories and pictures that make me smile today. She passed this July and I have no regrets with taking her on a cruise, to Disney and Miami Beach. A place she loved. They do not know the whole time, but the moments they do, you will cherish forever. My husband was a critic until he went with us. I couldn’t leave him home after the first trip he took with us. Mother would smile. If you would like more information I would be glad to offer more. Do it! Just take someone for help. You will all enjoy it like you want.

Piver said…
My husband, 83, was diagnosed with Alzheimer’s 7 years ago and is at stage 5. Still walking, talking, feeding himself with help. We, a 3 generation family, take short trips of 1-6 days and take him along. It’s stimulating and good for him. We have help to bring along which relieves me. I do all the things I do at home: set up flashlights to light the way to the bathroom, keep bathroom light on, block doors with furniture, have the help sleep on the way to the outside door. We stay in suites or condos all together. Finding food he can or will eat can be a problem. We carry some food like bananas, peanut butter, bread, cookies, hot chocolate powder with us. I suggest you try some short trips first and see how they work. Good luck and God Bless

Mahwah said…
With input from my significant other’s doctors I put off traveling. The simple reason is he could become disoriented which would probably cause him to become agitated. Another reason is the safety factor. It is obvious to most people that my significant other has problems, and I am very afraid of being taken advantage of in any way. We do maintain a social life by going out to dinner or lunch. He is very happy with that. My goal is to keep him happy and to protect him. We had a great life together for over 20 years.

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February 9, 2012

Easy Exercise for Seniors

Here is a summary of some excellent reasons we need to exercise as we age, according to the Mayo Clinic, Centers for Disease Control (CDC), and the National Institutes of Health (NIH):

Reasons To Exercise

  • Is good for your heart
  • Stabilizes blood pressure
  • Increases proper lung functioning
  • Improves back pain
  • Decreases joint pain and stiffness
  • Is excellent for weight control
  • Strengthens the immune system
  • Helps manage diabetes and glucose levels
  • Increases muscles strength
  • Improves flexibility
  • Helps with arthritis pain, including rheumatoid arthritis
  • Helps maintain good balance
  • Improves overall walking ability
  • Reduces falls and injuries
  • Strengthens bones and improves bone density
  • Lifts your mood and helps with depression
  • Calms and relaxes, and can ease anxiety
  • Improves aging and sleep problems
  • Lessens daytime drowsiness

* Improves restless leg syndrome (RLS) and leg cramps
* Can provide important social activity too

We may know all this. But do we do it? Many of us still resist – but why? Sometimes out of habit, sometimes for health reasons. Maybe we think we don’t have time. Or maybe we’re just a little lazy? Some of us think exercise can be flat-out boring.
As far as I’m concerned, first and foremost, it’s got to be fun. I am one of those who resist exercise unless it is really appealing. Or necessary, like house work and yard work. And yes, those are included as forms of exercise. I also have to bribe myself to exercise – give myself a special reward when I’m done. Plus it’s got to be easy – and exercise for seniors and boomers can be very easy, including while sitting and reclining.

How Much Exercise Is Enough For Seniors?
According to the Centers for Disease Control (CDC), the average person 65 years or older, exercise for seniors should ideally include both:

Aerobic (cardio) exercise to increase heart and lungs activity;
Plus strength training for the various muscle groups.

The major muscle groups include: arms, shoulders, chest, abdomen, back, hips, and legs. Exercise for seniors should include using these muscles groups several times per week.

Here is a simple breakdown of the ideal amount of exercise for seniors:

2 ½ hours of moderate aerobic (cardio) exercise each week (including brisk walking) and muscle strengthening for all muscle groups a couple days a week; OR
1 hour and 15 minutes of vigorous aerobics and muscle strengthening for all muscle groups a couple days a week.

Any of this can be done in (at least) 10 minute segments throughout the day and week. It takes a good 10 minutes of any activity for it to really be effective. Stretching and joint exercises can also be included.

And what is considered moderate exercise for some seniors may be vigorous for others. Like walking. It depends on what shape your body is in, what you are used to, and your overall health. Moderate exercise will simply make your heart beat faster and you will breathe harder.
With vigorous exercise like running, you will also break into a sweat. Sweating is healthy for you, of course, for your liver and for cleansing toxins out of your body. Just be sure to shower afterwards, or the toxins can be reabsorbed, one of my health professional friends has advised me. And as we age we should always consult our doctors or health professionals regarding exercise for seniors and middle-aged folks too, especially if we have health issues.

This all may seem like a tall order. At least to me.

Sometimes you have to first just get started in a small way, and then build it up. I know that if I jump into anything too fast and too much, I won’t keep it up.

Exercise for seniors is meant to be flexible and fun, even social. If you don’t know where to start, check out the following possibilities in your area:

  • Senior center
  • Fitness club
  • Church groups
  • Some local clinics and wellness centers offer exercise classes
  • YWCA or YMCA
  • Community center

Whatever you choose to do, be sure to always consult your medical professional first if you have any concerns. And pay attention to your own body. The most important thing is – to get moving – even in a small way!

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February 3, 2012

Diabetes and the Glycemic Index

What is the glycemic index, and should you use it to help keep blood glucose levels in check and help prevent obesity, high blood pressure and elevated blood lipids (total cholesterol, LDL cholesterol and triglycerides) — all of which increase your risk of developing diabetes complications?

The “glycemic index” is the amount that a particular carbohydrate raises the blood glucose level as compared with a slice of white bread, which is a reference point with a glycemic index of 100. Foods with a glycemic index higher than 100, such as instant rice, cause a faster and greater surge in blood glucose. Kidney beans score low at 38, as glucose jumps much less after eating them.

A number of books and diet doctors advocate low-glycemic-index diets. Because foods with a low glycemic index (such as whole grains and most fruits and vegetables) do not produce as rapid an increase in blood glucose levels when eaten, proponents of these diets claim that they are more healthful than foods with a high index (such as white bread, candy and soda). Based on this reasoning, proponents say that low-glycemic-index foods should constitute the greatest proportion of your carbohydrate intake.

The glycemic index can encourage better carbohydrate choices, such as consuming more fiber and fewer high-sugar foods, but it may also lead to worse choices, such as avoiding carbohydrates altogether and eating fattier foods.

There are certain limitations to the glycemic index even theoretically: For instance, it considers the effect only of the carbohydrate and not the other foods you are putting in your stomach at the same time, each of which can affect blood glucose response.

In our opinion, then, focusing on and calculating the glycemic index of each carbohydrate you eat is often too complicated and burdensome. Choosing healthy carbohydrates is certainly beneficial, but this does not have to be done with a careful glycemic index calculation.

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February 1, 2012

Home Safety: Looking at the Bigger Picture

Kathryn Kilpatrick, M.A. CCC/SLP

shower handrail1 Home Safety: Looking at the Bigger PictureOnce a loved one is showing early signs of poor judgment, decreased orientation to time and place, anxiety and/or confusion, the environment in which they are living may need some adaptions while everyone is trying to figure out the best next step.

It is never too soon to start those sometimes difficult conversations about moving closer to family or to a smaller home in the same area, perhaps with all the rooms on one floor. Maybe it is time to talk about bringing in additional help or looking at an independent or assisted living residence. Postponing these discussions can only increase the safety issues where an older adult is currently living, especially if the person is living alone.

I was grateful that my mom chose to move into an apartment after forty years in the home where I grew up. That last evening before the move took place, I remember reminiscing about the memories in our home, room by room. She had many years in her new apartment without the hassle of yard work or repairs. The move to an assisted living was a proactive one, not one she was too excited about. Eventually she even admitted it was really the best thing to do in the long run. Mom was able to enjoy more than two years in an environment that was not only lovely but allowed her options when she chose to stop driving and also after she fell and broke her hip.

My move will be coming in the next few years. Leaving a space I love and adore where the outside views of nature, lots of trees and many deer visiting on a daily basis is going to be hard but I know it is the smart thing to do. Hopefully I will not face any major challenges but doing home health care for more than three decades, I have seen it all and need to “practice what I preach” to my aging clients and their adult children.

Over the years I have seen patients who had strokes or other physical limitations and the only way they could get out of their homes for medical appointments was by ambulance. One home was built on a hill and there were over thirty steps to the front door and the back had a pathway with a very steep incline. In this case, the family had to immediately start looking for a place to move their parents, who were in their eighties. Like so many, this couple just never wanted to leave their home where they raised their children. In some cases, I have seen homes where the older adult was able to stay, at least for a few years more. There was a bathroom on the first floor, they made the dining room the bedroom and had a wheelchair lift installed outside so they could get out of the home more easily. Others have installed a chair lift to be able to get upstairs and in some cases another one to be able to get to the basement.

One of my friends recently built a home and knew that the stairs would be problem for her aging parents when they visited, so they installed an elevator. She was also looking ahead since this was a home she hoped to be able to live in once she was retired. What will you look at as you approach those retirement years? One family built a new home on one floor and added a section for their aging parents who lived out of town but wanted to be closer to the grandchildren. This is a plan that began as a discussion many years ago when a set of possibilities were put on the table. As the health status of one of the parents changed, it was easier to put the plan that best fit the situation into action.

“Safety isn’t expensive, it is priceless.” Author Unknown

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December 1, 2011

So Your Parent Wants To Move In With You – Can You Afford It?

I can’t begin to tell you how often I hear about people trying to cope with aging parents moving in with them and, after the fact, getting family members to share the load. Even well-intentioned families with a history of close ties are unprepared for the realities of this situation. I think this article by Melanie Haiken offers some terrific insights into these realities and some great ideas on how to work toward solutions to keep the family unit nurturing and sane.

–Ira Uslander

 

So Your Parent Wants to Move In With You ‑‑ Can You Afford It?

by Melanie Haiken, Senior Editor at Caring.com

Recently I heard from Sarah, an old friend, about a hard situation she’s in that I’m sure many readers can relate to. Sarah’s mother‑in‑law moved in with her and her family more than a year ago, and since then Sarah’s had a really hard time dealing with her husband’s siblings, who aren’t helping out as much as they promised.

But what Sarah’s finding even more stressful is that the expense, both in direct costs and in time lost from work, of having an elderly person join the household is much greater than she expected. And what really galls her? No one else in the family seems motivated to chip in. “This summer it really got to me,” Sarah told me. “We were stuck here in the Midwest heat, working ourselves to the bone keeping up with our jobs and caring for mom, while my husband’s sister’s family went to the Bahamas, and his brother and his wife spent weeks at their lake cabin. They didn’t invite their mom to join them, and it never occurred to them that we could use a vacation too.”

The problem is, it’s much harder to get situations like this straightened out after the fact, after expectations have gelled and things have settled into a routine. So here are some suggestions culled from elder planning experts for how to set up a working financial arrangement with siblings before your parent or other family member makes the move.

Sharing the Financial Load With Siblings

1. Create a “caregiving budget.” Make a list of estimated expenses and determine how much the parent, the caregiver, and/or siblings will contribute. This budget should take into account the full cost of living for the family; not just food and transportation, but mortgage or rent, homeowners’ insurance, utilities, etc. Many people make the mistake of thinking, well, I’m already paying this mortgage amount, so I shouldn’t charge my parent for a share ‑‑ no. Even if your home is big enough that you don’t have to make any changes to accommodate your family member, he or she should still share those basic expenses, unless there’s really no money available. If not, resentments will arise down the line. Again, this may need to be made clear to siblings.

2. Figure out how much your parent can contribute. Sometimes, aging parents will have sufficient resources (possibly following the sale of their home) to pay the full cost of their care in your home. For example, if Sarah’s mother‑in‑law sold a home before moving in with Sarah and her husband, that money could be used to contribute to Sarah’s household. Sibling alert: This is an issue that must be discussed openly ahead of time. In many families, there’s an unstated expectation from adult children that they will inherit the funds from the family home. I’ve heard more stories than you can believe of families where the family home is sold, and the proceeds set aside for future inheritance, while one sibling struggles to support and care for the now non‑independent parent. That’s not how it should work, experts say. All the siblings need to discuss and agree that the proceeds from the home are to be used for the parent’s care during his or her lifetime. And if that care is in one sibling’s home, the funds will last much longer than they would if they were used to pay for assisted living.

3. Calculate a fair contribution for the parent to make to household expenses. This is tricky, of course, and has to take into account both what resources the parent has, and what the cost of living is for that particular household. But here’s a ballpark way to look at it: If an aging family member becomes part of what’s now a five‑person household, and the total monthly expenses for that household are $2,500, the new resident might contribute one‑fifth, or $500.

4. Call on siblings to contribute. If an aging family member doesn’t have resources to pay for his or her care, the siblings together should come up with a payment plan. Really ‑‑ it’s only fair. If you figure it costs you $1000 a month to have your parent in your home, and there are three additional siblings, you could ask each for $250. Alternatively, your siblings might very reasonably decide that your time in caring for the parent is your contribution, and divide the $1000 three ways.

5. Keep track of additional costs and share those too. Food, housing, and utilities are only the start, and not realizing this ahead of time is one of the biggest stressors for family caregivers, as the costs begin to mount. If you’re the one taking Dad to the doctor and picking up his medications, you’ll be writing checks for co‑pays and prescriptions. There will be special purchases to make and supplies, such as adult diapers. You may have to make changes to your home, such as putting bars in the bathroom or widening a door for a wheelchair. There may be transportation costs, or fees for services. Since you’re Johnny‑on‑the‑spot, these expenses will end up coming out of your pocket. Keep a running tab of caregiving expenses and send a regular tally to other family members, with their share indicated. One way to simplify the record keeping? Have a separate credit card and use the monthly bill as your record. If other siblings can’t or won’t pay their fair share on a monthly basis, you’ll want to keep even more careful records, as you may be able to recoup your expenses from your parent’s estate before it’s divided up.

Hiring Help and Getting Paid for Your Time

6. Don’t be afraid to hire outside caregiving help and share that expense. Whether you work full or part time, or stay home, you may need to find adult day services, or a senior center that provides meals, or hire a caregiver a few hours a week, so that you have the freedom to take care of your other responsibilities. This is perfectly understandable; don’t get stuck in the guilt trap feeling like you signed on to do it all. You may also need transportation for your parent to and from the senior center or day care center, and may need to pay for that, too. Discuss these arrangements with other family members ahead of time, so they don’t feel blindsided, and see if there are other options. Another family member might, for example, choose to step in and have Mom come for a visit every Thursday rather than pay for adult day services, and that’s fine. But if no one else can provide regular, continuous care you can count on, then you’ll need outside help, and that’s a shared expense.

7. What about being paid for your time? This one is pretty individual, and every family situation is different. But here’s the bottom line: If you or someone in your immediate family has to quit work or cut back hours in order to care for your aging family member, then that lost income is a family‑wide issue. Likewise, your time. If your parent needs a lot of day‑to‑day care that would otherwise be provided in an assisted living facility or by a caregiver, and it’s you doing that work, your family needs to acknowledge that time spent, and its impact on the rest of your life. Maybe they’ll want to spring for a caregiver, maybe another family member can step in for a few shifts, or maybe they’d prefer to pay you for your time. But no matter what, the contribution of the one doing the caregiving needs to be acknowledged. You can also look into being paid as a caregiver through Medicare.

Of course, if an older family member is already living with you, and some of this advice is hitting a nerve, it’s never to late to revisit arrangements. Call a family meeting and be direct and honest. Explain that you’re happy having your family member in your home, but there were certain details about how it would all work financially that you didn’t know enough to consider at the time. Lay it all out for the rest of the family, and explain that things need to change. It helps if you’ve made a budget, kept track of expenses, and can demonstrate what is and isn’t working. Remember, your siblings are getting off easy, here. All the work and responsibility for your family member’s care is falling on your shoulders, not to mention the inconvenience, lack of privacy, and at least occasional frustration and irritation of having an elderly person in your space. So let them step up to the plate in other ways, so you feel supported. It’s the only way to protect other family relationships from the stress and strain of resentment.


Taking the Distance out of Long-Distance Grandparenting

Long distance grandparenting is not a new issue, but the development of technology over the past few years has made a tremendous difference in our ability to cope with it. Of course, the first thing to accomplish is what my wife and I had to do, which is to accept the geographic distance and do things to “shrink the world.” The Internet is being used for many things, both good and bad, but for the senior community it is truly “the window to the world,” especially when it comes to family. I hope you enjoy reading this article as much as I did, and as much as Arlene did writing it.

–Ira Uslander

 

Taking the Distance out of Long-Distance Grandparenting

By Arlene Uslander

When I found out that my 2-year-old grandson, Eric, was going to move 8,000 miles away from me, with his parents, all the way to Guam, my reaction most closely matched that of a friend who told me, “If my grandchild moved that far away, I would absolutely die!” And I thought I would, from a broken heart.

For months before Eric left, every time I was with him, all I could think about was that soon, I wouldn’t be with him. Yet, when the time finally arrived and he left, I began to realize that there was nothing I could do to change the situation – that the only thing I could change was my reaction to the situation. So I stopped feeling sorry for myself, and started thinking more about my grandchild, and what I could do to make the transition as easy for him as possible.

By comparing notes with other “long-distance grandparents” and by trying my own ideas, I found that there are many things one can do to keep the relationship between you and the grandchildren alive and well. Here are some ideas:

Internet Video Communication. Whoever came up with the idea for Skype and other Internet voice-video programs that allow people not only to talk to each other, but to see and talk to each other via the computer, must have been a grandparent whose grandchildren lived far away. Webcams have been around for a number of years, but when they first came out, the image one saw on the screen was very small, and there was usually a delay in hearing the sound. Today, due to ever-increasing advances in technology, the visual part covers the whole screen, and you can carry on a conversation with someone or ones on the other side of the country – on the other part of the world! What a fantastic thing for grandparents and grandchildren.

Voice recordings. Whether on audio cassettes or hand-held digital recorders, your grandchildren can play the cassettes over and over again. Shortly after Eric moved away, I sent him a cassette that I called “Eric’s Friends,” on which I recorded the voices of people who were important to him. Some of the people I recorded in person; others I taped over the phone. Each person reminded Eric of special times they had shared with him, and at the end of the message, each would ask, “Do you know who this is?” so it would be like a little game for him. You can read story books on the cassette or digital recorder and mail the book, along with the cassette, so your grandchildren can turn the pages and look at the pictures as they hear you read the story.

Video tapes. Shortly after Eric moved to Guam, his sister, Carly, was born. So now there were two little ones with whom I wanted to connect. If you can’t see your grandchildren in person, and they can’t see you, the next best thing is seeing each other via Internet video communication as mentioned above, and next is on video tape. Knowing that we couldn’t be with Eric to celebrate his 2nd birthday, or with Carly to celebrate her first, the rest of our family made “Happy Birthday” videos. We all wore birthday hats, including the two family dogs; we sang to our grandchildren and recited their favorite nursery rhymes and stories. You can video tape yourself reading story books aloud, and send the children the book along with the video tape or DVD.

Photographs.  Photographs are one of the best ways to take away some of the distance. I continued to send Eric photos of the people and things he most enjoyed back in Chicago, where we lived, and where he spent his first two years of life. After he and Carly visited us, I sent them each a small photo album filled with pictures of the things they saw in Chicago, and the things we did together. Once digital cameras came out, we found that sharing photos via the computer is a wonderful way to stay in touch and to feel like you are part of your grandchildren’s special occasions and events, and vice versa.

Gifts. Even if you’re not too handy with crafts (as I’m not), you can make simple things that appeal to children: sock puppets, yarn dolls, and little houses or farms from shoe boxes or other small boxes, for which you can purchase inexpensive animals and figures at discount stores. Whenever you send your grandchildren a gift, ask their parents to show them your picture, so they know that the gift came from you.

Phone calls. These will be important to you as well as your grandchildren. When you talk to them, mention the names of people and things with which they are familiar. Repeat the child’s name and the name he or she calls you, during the conversation. Even if your grandchild is too young to carry on a real conversation, he/she isn’t too young to listen.

Visits. NOTHING can take the place of time spent together. When you do visit with your grandchildren, arrange special times to spend with them without their parents. This will help you and your grandchildren become re-acquainted, and will also give the parents some time to themselves. Take the children to places they especially enjoy, and to places they have never been. Arrange for quiet time to be alone with each child: to read stories, exchange confidences, and to give some extra hugs and kisses.

Email. As the children get older and learn to use a computer, emailing is the best thing ever invented to connect grandparents and grandchildren who live apart. And don’t forget the fax machine. I will never forget the time I received a fax from then  3-year-old Eric (dictated to his parents) that said, “I will sing one hundred songs for you.” Eric is now 20 years old, and I am still waiting for that first song. But that’s OK. At least he and his 18-year-old sister, and 5-year-old brother live in California, as do their grandfather, Ira, and I. Now, we have to think of ways to connect with our 19-year-old grandson, Ryan, who still lives in Chicago.

 

Arlene Uslander is the author of 16 books, including That’s What Grandchildren Are For, and her latest award-winning book: The Mystery of Fate: Common Coincidence or Divine Intervention? Visit her website: www.thefatesite.com  


November 30, 2011

Misunderstanding Home Care

I too, see the misunderstanding of how Home Health, Non-Medical Care and Hospice confuse many people and am somewhat surprised that many healthcare professionals are not as clear as I thought they should be. This article is a bit on the long side but please bear with it since there is some very valuable information provided.

–Ira Uslander

 

Misunderstanding Home Care

by Angil Tarach‑Ritchey

There is so much misunderstanding about homecare that I want to help clarify the misunderstandings. Many refer to homecare as home health or just homecare without ever realizing there are 3 types of homecare. This isn’t a just a misunderstanding in the lay community, but there is an enormous lack of understanding among medical professionals and those working in the medical field. Even websites that provide health information can be very wrong in their description of home care. They use home health and homecare interchangeably as if it were one in the same.

The lack of knowledge, particularly in the medical community is a huge disservice to patients. Because of the changes we have witnessed in healthcare in the last several years patients are being left to their own devices to educate themselves, and advocate for the best care. If doctors, nurses, social workers, and discharge planners don’t understand homecare, or teach their patients about home care options, how are patients supposed to find the resources that would best suit their needs?  I have spent most of my career working as a nurse in Home Health Care, Hospice, and for the last 8 years owning Visiting Angels Private Duty Homecare in Ann Arbor, Michigan.  I speak about this from years of experience, and care for countless families in all 3 types of home care.

There are 3 types of home care as I mentioned. Home Health Care, Private Duty Homecare, and Hospice Care.

The most confusion comes between Home Health and Private Duty. There is also a need for Hospice education, but that is specifically related to hospice services, and when hospice is appropriate. I will briefly touch on Hospice care in this article.

HOME HEALTH CARE:

Home health care is medical care in the home for homebound patients. It is a benefit of Medicare, Medicaid, and most private health insurances if the patient meets very specific criteria. Home Health provides Nursing, Physical Therapy, Occupational Therapy, Speech Therapy, Social Work, and Home Health Aides.

To qualify, a patient typically has had an acute health change requiring hospitalization, and home health is initiated upon hospital discharge. The patient must be homebound, meaning they only leave the home for medical appointments. Qualifications don’t require hospitalization, but that is the most common qualifier for home health. A patient can also qualify if there is a significant change in health status, such as an acute illness or injury not requiring hospitalization. For example, if a patient went to ER for trouble breathing, and was having a hard time controlling congestive heart failure, they would most likely qualify, but again would have to be homebound. If a patient was physically debilitated due to an illness or injury, and needed therapy to regain strength and balance, they could qualify.

Patients also can qualify based on a new and life altering diagnosis, such as insulin dependent diabetes. Diabetics are at risk for a multitude of problems from uncontrolled blood sugar so education and monitoring is essential to prevent complications.

Home Health is always set up on a short-term, temporary basis. It must include either nursing or physical therapy to obtain services. Home Health must be ordered by a physician to be covered by insurance. Visits are determined based on the nurse’s initial assessment, and the therapist’s assessment. Nurses typically determine which of the services available will be initiated and how often they and the home health aide visit. Therapists, either initiating care or being initiated by the nurse, provide their own evaluation to determine the frequency and length of their visits.

The goal of home health is to improve health outcomes. Their services are guided by Medicare guidelines.   Medicare expects the home health team to educate the patient and family specific to the ordering diagnosis and discharge as soon as possible. Medical procedures that were once done by nurses, such as dressing changes on wounds, daily catheterization and injections, are now being taught to patients and families with the expectation that a responsible party within that patient’s family or friends will provide those medical procedures, after being taught by the nurse.

Home Health aides can only provide personal care according to Medicare guidelines. This includes bathing and grooming, but does not include providing meals, housekeeping, or any type of tasks that aren’t directly related to personal care.

Therapists provide therapy but their main job is to educate the patient how to perform the therapy and all the work is up to the patient. No one really improves if they don’t follow the therapist’s directions to follow the exercise plan when they are not there.

There is always a care plan that is followed by the team, with the inclusion of the patient, and family if applicable. Home Health is set up on a 60 day basis. The professionals who visit will typically be in the home for 45 minutes to an hour. As weeks go on in the 60 day certification period, visits decrease, unless the patient’s health status declines. If the team determines the patient improves to the point they no longer qualify for services, or they do not remain homebound, discharge will be before the 60 day certification period ends. If the patient continues to have significant health needs that cannot be improved in the 60 day period, home health can recertify the patient beyond the 60 days.

PRIVATE DUTY HOMECARE:

Private duty homecare is non-medical. The services are provided by caregiver’s and/or certified home health aides (may be dependent on individual State regulations). The services provided are considered custodial care, and do not require a physician’s order. Services are designed to help the care recipient remain in their home as independent as possible by providing hygiene, meals, light housekeeping, companionship, errands, and medication reminders. Some agencies or individuals providing services include transportation of clients, some do not.

The amount of services is determined by the care recipient, and/or family, because Private Duty is not covered by health insurance. Most Private Duty Homecare services are paid out of pocket, but may be covered in part or whole by long‑term care insurance or Veterans benefits.  Individual States may have programs providing limited Private Duty services for low income residents, but my experience is they are very limited on the number of residents they can qualify for services. There is typically a waiting list for these programs, or they are closed to new applicants. They provide very little amount of services from agencies that contract with them.

Private Duty often works in collaboration with Home Health agencies because the services are very different in nature and typically if someone needs home health, they also need assistance with activities of daily living (ADL’S). Because I am a nurse and geriatric care manager, I always assess the need for home health care if our client comes to us before home health. I make referrals so our clients’ can improve to enjoy the best quality of life possible. Many Private Duty agencies do not involve themselves with health care at all because of the lack of knowledge in understanding health care needs.

Private Duty Homecare is available 24 hours a day, 365 days a year. Clients can obtain services long term or short term. Some agencies require a minimum amount of hours either per shift, per day or per week, some do not. This varies by the agency, as well as the rates, so check around.

Each State determines if they will regulate Private Duty agencies, so check with your State to determine whether they license Private Duty agencies or not. Michigan is an unlicensed State, so there are no regulations on Private Duty homecare in the State of Michigan. Ethical, legitimate agencies, like my own, are pushing for regulation for the protection of the elderly.

Private Duty agencies are NEVER certified by Medicare, because Medicare does not cover these services. Long Term Care Insurance companies have been difficult to deal with in the recent years because the language in their policies states the home care agency must be licensed or Medicare Certified. They are beginning to understand this varies by State, and paying claims they tried to deny in the past.

Some Home Health agencies also operate Private Duty, but they are run as separate companies. Even when their Home Health division is Medicare certified, their Private Duty is not. Very few companies that offer both Home Health and Private Duty do both well. The focus tends to be ion the Home Health division with little attention to providing excellent Private Duty.

I’ve always believed that if a company diversifies itself too much they typically don’t do it all well.

I would rather contract a company whose sole concentration and expertise is in Private Duty, or Home Health than one that tries to do it all.

HOSPICE:

Hospice, as most know, is care for the dying. The perception is usually not accurate with what hospice is or what they provide. Hospice can be provided in homes, hospice facilities, long term care facilities and in hospitals. Medicare, Medicaid and most private insurances cover hospice care. This also requires a physician’s order, but does not require the patient to be homebound. It is initiated based on a terminal diagnosis. The old rule of thumb used to be if the patient was given 6 months or less to live. That is no longer the case. Although it is expected that death is impending from a terminal diagnosis.

Hospice consists of Nurses, Home Health Aides, Social Work, Spiritual Care, and Volunteers, as well as a Bereavement Counselor. Patients may use all or some of the services based on their needs and preferences. Visits are short, typically between 45 minutes and 1.5 hours. Volunteers may be scheduled longer, and of the staff may be in the home much longer than a typical visit if the patient is in need of pain control or other comfort measures.

Although Hospice operates under a primary physician or medical director who is a physician, hospice nurses direct care. Nurse’s case manages the care and work as a team with other hospice professionals, as well as the family and even friends of the patient.

Some Home Health companies have hospice as well, and often have a transitional program. Patients may start out with Home Health, and as they decline decide to transition to Hospice services. Patients never have both. The focus of Home Health and Hospice are very different. Home health concentrates on improvement, and Hospice concentrates on comfort, support, and the best quality of life possible for however long the patient will live. They specialize in pain control and the process of dying. They address physical, emotional, and spiritual needs, not only with the patient, but with their loved ones.

Private Duty will often work in collaboration with Hospice, to provide care when families are unable or need respite. Private Duty follows the direction of the Hospice team to maintain comfort and support for the patient. Rather than contacting EMS or the client’s physician for help with changing status, Private Duty caregiver’s contact the Hospice nurse for instruction.

I hope this clarifies the misunderstanding of home care. There is no charge for most Hospice or Private Duty companies to meet with you to assess your needs, and provide information. Home Health is a bit different in the fact that it is physician ordered, and they make the appointment to assess, and plan the start of care. Hospice and Private Duty are more optional. Understanding your health status, or your loved one’s status, and what your needs are can help you obtain the best services for your situation. Most companies are very receptive to calls for information.

My suggestion is to always check out the company before beginning services. Most consumers don’t realize they have a choice. You have the right to choose a Home Health, Hospice or Private Duty company. Just because a hospital or care facility owns their own home care companies doesn’t always mean they are good or the best for you or your loved one. Keep in mind some health care companies want to provide it all and keep their patients in their system for financial reasons. Their financial goals will not benefit your care. Ask the tough questions, ask for references, Google the company you are interested in. Know the owner’s name and Google them as well. Many consumers are now voicing their dissatisfaction with providers that are all over the web. Just realize one person’s dissatisfaction isn’t verifiable to exclude a company. A few dissatisfied consumers can provide be the basis for exclusion.


How Do I Get a Break from Caring for my Mother

Many times we can learn as much, or more, from each other as we can from the professionals. This is especially true when they are peers who are walking in your shoes. One of the most important aspects of this sharing is the knowledge that you’re not alone, your loved one is not exhibiting symptoms and behaviors that have not been experienced by others, and that family stress seems to be almost universal when dealing with dementia. I hope you will find some value in the following words of wisdom.

–Ira Uslander

 

How do I get a break from caring for my mother?

 Question:

My mother thinks I should be available to her 24/7. I live with her. I need a break for my own sanity. How do I deal with this? She can be very abusive.

Professional’s Answer:

You have two different problems, it seems to me, and both need addressing. The first problem is that you need regular breaks from your caregiving duties. The second problem is that your mother’s behavior is unacceptable.

In general terms, both these problems have the same solution: you need to develop some boundaries to protect yourself from caregiver burnout, and abusive treatment.

What would such boundaries look like? First of all, you need to make it clear to your mother that she cannot talk to you in a rude or belittling way. The best way to do this is by speaking directly about how you would like to be treated. Avoid accusations, threats or guilt trips, as this will only put your mother on the defensive. Instead, use “I” statements to make it clear that you love her and are committed to caring for her, but that you expect to be treated with respect and courtesy.

As part of this discussion, you can also make it clear that you need and intend to begin taking regular breaks from caregiving. Before you sit down to talk to your mother, do some research on respite care, senior centers and other caregiving resources in your community. You can get started by contacting your local Area Agency on Aging. Have this material on hand when you talk to your mother, and present her with options so she’ll have choices about what type of caregiving arrangements she’s comfortable with.

Do not let yourself get derailed if your mother resists your attempts to take time for yourself. As a caregiver, you need regular breaks to pursue your own interests, see friends, or simply relax and do nothing. IIn fact, if you continue at your current pace, you are at risk of becoming ill, burned out and/or seriously depressed. You will be a far better caregiver if you have the opportunity to regularly refresh yourself and recharge your batteries.

You may need help and support to change what sounds like a long-standing dynamic between you and your mother. If you talk to your mother and she continues to act abusively toward you, or/and if she refuses to allow anyone else to care for her so you can have some time off, I’d advise you to see a therapist or mediator to help you resolve this issue.

Ginger’s response:

I don’t know if I have an answer but I understand what you are talking about because I’m in the same boat. My mom expects me to do everything for her. I can’t sit down or do something for myself unless she is sleeping. The visiting nurse told me that I was an enabler and that I have to just say no.! But to do this I get all stressed out because I know that she will argue with me. So i grin and bare it. I have a lot of health issues myself but she doesn’t understand. Maybe you can give me some advice?

Sweetone’s response:

Dealing with my mother and her memory loss has been hard and until I learned that I, as the caregiver, had to take care of myself, to be able to take care of her. When she is demanding and wants only me, I have say I will when I get back or wait for just a few moments, talking ugly is not allowed by her or anyone else that helps to care for her. Now, in this stage of her progress, she does not want to be disturbed at certain times, we have learned to let her rest and she will cooperate better.

DeSing’s response:

I’m sorry to hear that your mother is being abusive. My Dad is like that, too. I’ve had to tell him more than once that he cannot say mean or sarcastic things about me, even if he thinks it’s a joke. He tends to think everything is a “joke” so that he can’t be accountable for it. At least that’s the way he was before his dementia. If someone knows if this is a trait of dementia, I’d like to know. Anyway, he has now learned that he can’t say mean things about me or anyone else. He also makes comments on someone’s looks, their weight especially. I tell him it’s not appropriate to discuss someone’s appearance. He’s still learning that one. I don’t have any children of my own, but I am a child and family therapist. I’ve discovered that if I respond to Dad’s behavior as I would a 5 year old, it’s pretty much on the mark and he responds well to it. I don’t get harassed and he learns limits.

Early in his dementia I had more comments from him about being treated like a child. Those were his more lucid moments, unfortunately. I did apologize to him, but I reiterated that those are the rules. Now he has fewer lucid moments, if any, and he just tells me, “Man, you’re tough.” Above all, I try to keep the balance between limits, rules, and dignity. Sometimes, it’s very difficult.

Good luck with setting limits with your Mom.

Hellofasittuation’s response:

It all depends on your individual circumstances. If your mother is abusive, there are different gradations of such treatment. Does she generally have empathy for you, but gets frustrated and lashes out? Or, is she incapable of emphasizing, in which case she will be cruel, demeaning and brutal. This would mean she has sociopathic traits and you and your feelings are merely strings that get pulled in order to produce a desired outcome. The result is you feeling gutted like a fish, and your mother will get great satisfaction and enjoyment out of doing this. Can you blame her? Psychologists can still not agree on what causes this condition. She may have been born this way or it could be the result of growing up in an extremely abusive environment. Either way, not engaging with a sociopath is often the way to go, but detachment often enrages, which could be dangerous. I’m sorry you are in this situation. Especially since we all care for our mothers, even more so if they’ve seemingly cared for us.

Seansmom’s response:

My mom will soon be 92 and she has been living with my husband and I for about four years now. It is difficult as we are pretty much together 24/7. I used to feel guilty when I went out without my mom but I’m slowly learning I must….there are not any two people on earth that can be together constantly, everyone needs breaks from one another. I’ve come to the realization that I’m a wonderful daughter, my Mom had a wonderful life and she is in a safe caring environment but I’m also entitled to breaks from time to time. It is exhausting. I totally understand what you all are going through as I’m right there with you… I keep all my interests…I even started a blogtalk radio show literally as a hobby. I became a caregiver but I as well as all of you are far more than just that. I speak of all things related to 50 somethings … I’m 52.