New Elder Communities Take Root Where We Already Live.

Written By:

Christopher Van De Moortel, President

Aging in Place and Senior Villages are beginning to sweep the country. Each “village” may vary slightly in their approach to helping seniors remain in their homes, but most have a combination of volunteer services and third party providers. From roofing contractors to picking up a prescription, their mission is to redefine how we live out our days: at home, in our homes, and not in nursing homes.

Na Hoaloha in Hawaii began in 1995 with the mission of helping those who fall through the cracks of the state and federal systems, using a neighbors helping neighbors framework. In 2001 in the Beacon Hill neighborhood of Boston, older citizens got together and created a network of services provided by volunteers, non-profits, and for profit third party companies. Since then the concept has continued to move down through New York City; Philadelphia; Washington, DC; Richmond, VA; North Carolina; and to the west coast. Senior Villages are the new paradigm in caring for the elderly. They have grown up from within their communities and in many cases you’ll see seniors helping seniors.

In the greater Washington D.C. area we have a number of Senior Villages. Capitol Hill, Palisades, Northwest Neighbors Village, Bannockburn, Chevy Chase, Burning Tree, Cabin John and Somerset to name a few. In some cases there are fees charged to residents of these villages to pay for the coordination of volunteer services and referrals to third party providers. Often, discounts are extended from those providers to residents within the village.

Home care for older adults in senior villages has tackled much of the physical environment (getting your groceries, going to the doctor, fixing the roof, etc.). We also must address the things that are less tangible like communication and socializing. In the senior village model, for the people that have all their needs taken care of – the laundry done,  a ride to the doctor, groceries delivered, and Junior helping Dad shower – many of these needs are being met through a combination of volunteers and vetted third party providers.

Caring for the elderly at home, in senior villages or not, requires a multi-pronged approach. While online communities  can help mitigate feelings of isolation and depression, and sharing photos of grandkids via email can bring a smile to the face and help seniors stay connected to family, there is another kind of interaction missing.

It is imperative to include dementia support and caregiver support in this new paradigm of senior living – what we call Caring for the Caregiver. Even with all the help for seniors, the primary caregiver is often overlooked. By addressing the primary caregiver’s emotional needs first, aging in place is easier.

In my opinion, assisted living for seniors in an institutional setting just doesn’t fit the bill anymore.

Compulsive Hoarding Syndrome is often associated with obsessive compulsive disorder (OCD). It is a complex disorder, however – many hoarders suffer from other comorbid problems such as chronic depression, attention deficit/hyperactivity disorder (ADD/ADHD), dementia, generalized anxiety disorder (GAD), social phobia, or schizophrenia/paranoia.¹‚ ²

Hoarding is neither simple, nor benign. As we talked about in an earlier installment, “Hoarding: Time to clean out the house,” hoarding can kill.

Ole Bert’s place down the road, six old tractors, a few car carcasses, a refrigerator, rusty stove, lamp skeletons, disemboweled sofas and chairs, a bathtub, heaps of parts for whatever a body could ever want, a few dogs, feral cats around the house and throughout the yard of knee-high grasses and weeds. The shades always drawn. The porch falling off. No one knew what the inside looked like. Bert wasn’t one to socialize at home. No one called it hoarding. When yards were measured in acres, it was just ole Bert’s place.

Not many people live on acres of land now. In the metro Washington DC area as around the country, they’re closer, share walls, small yards abut. Ole Bert isn’t the eccentric living out on the edge of town. He’s next store, and the odors and vermin from his place are invading his neighbors’ homes. Slowly we’re realizing that Ole Bert isn’t just cluttered, isn’t just a collector, doesn’t just have excessive accumulations, isn’t just chronically disorganized, isn’t just a pack rat – he has a serious problem. And ole Bert is our parents, sister or brother, spouse, child, neighbor…ourselves.

Regardless of the causes, individuals with hoarding disorder share four fundamentals:

1. Difficulty processing information;
2. Problems in forming emotional attachments;
3. Behavioral avoidance; and
4. Erroneous beliefs about the nature and value of possessions.
   
   

   Unsanitary, unusable kitchen.

Compulsive Hoarding Syndrome severely limits the use of living spaces and poses safety and/or health risks. Equally important, it interferes with work, social, and everyday functioning.  Often, hoarders cannot cook in the kitchen, wash the dishes, sit in a chair, sleep in their beds, bathe in their bathrooms, launder their clothes – because every surface is buried in clutter. Utilities – plumbing, electricity, heat, air conditioning – usually don’t function well, or at all. Rodent and/or insect infestation is common. Frequently, hoarders have rented storage spaces – nothing more can be shoved into the home.

Hoarders don’t have friends or family in. They’ll meet at a restaurant, a coffee shop, someone else’s home. Or they don’t go out socially. If they work, they go in early, stay late, pick up take-out on the way home. Or they don’t go out at all. They stay secluded inside, behind darkened windows and locked doors.

Hoarding Disorder – What’s Going On?

Although some cases are less severe than others, hoarders are reluctant – often unable – to acknowledge the problem, much less fix it. While they may acknowledge that their collections have gotten out of control, they seem to be powerless to whittle them down or stop collecting. They have no problem, others do. They will tidy it up tonight, tomorrow, or next week, but tomorrow never comes.

While hoarders can be charming, intelligent, educated, personally well-groomed and employed, in their homes they’re unable to get rid of anything. They may need it, it was on sale, it can be fixed and used…. Saving money, recycling, reusing is good – until you have hundreds of 48-roll packages of toilet paper, thousands of canned goods dating back twenty years, mounds of boxes from catalogue orders that haven’t been opened, walls of stacked newspapers, fast food containers and junk mail, and keep on saving, scavenging, compulsively shopping. Yard sales, alley finds and dumpsters can become irresistible, with lots of good (hey, with a little work, it could be good) stuff, for nothing, practically! Napkins, condiment packets from restaurants – no one will care if you take a few…they’re free…you can never have enough!

When someone tries to touch their things – to sort, organize, throw out useless, dirty, dangerous things – the individual will use every “weapon” to make them stop. Stealing is a common charge. The individual will scream, curse, weep, withdraw, become ill, throw things, urinate, defecate, manipulate, bribe, hide, not be at home, refuse to answer the door or phone…run guilt trips that Shakespeare would envy for variety and creativity.

Researchers know the behavior generally begins in childhood or adolescence and that it tends to run in families. Hoarders are likely to be unmarried or divorced, frequently isolated and without family. They may have difficulty meeting and interacting with others, so they surround themselves with things. Later, they experience shame at others seeing the mess they live in, so don’t go out or invite others in.

If family members are not close by, the problem can go unnoticed for years. Yet for the family, dealing with hoarding is tough. Children of hoarders are especially torn – they can feel like the red meat in a dog fight, between what the folks say and coming to the realization that the folks are in real trouble, and they – the folks and the children – need help. If you are a caregiver grappling with this issue, please read our earlier post Caring for the Caregiver.

¹ Frost, R.O.,  Department of Psychology, Smith College, Northampton, MA

²Steketee, G., PhD, School of Social Work, Boston University, Boston, MA

In order for a community to support its citizens as they age in place, the physical environment is paramount. Is it walkable? Communities that are successful in caring for their elders will answer this question, “Yes!” Are there supportive businesses nearby like a dry cleaner, cafe, grocery store, restaurant, or exercise gym with programs for seniors? What about a library, post office, church or community center? In many places the resources are there, but there are physical obstacles like roads. In Bethesda, Maryland this barrier was overcome with a variety of tools. There is underground passage near the metro station that allows pedestrians to cross the six lane, divided Route 355, and an overpass on the similarly busy Old Georgetown Road. The Bethesda 8 Trolley offers free rides all week long and circulates through much of the city. Even in places where it is too costly or unrealistic to build an overpass, municipalities can easily increase length of time of walk signals to allow senior citizens, a parent with two kids in a stroller, or someone on crutches to safely cross the street. That’s the beauty of universal design. It helps everybody.

As heard on the Kojo Nnamdi Show last week, Aging in Place Villages or communities like The Palisades in Washington, DC and the Bannockburn Community’s ‘Neighbors Assisting Neighbors’ nearby in Maryland, have taken a little more grassroots approach. In the Palisades when you join as a paying member you can call one phone number to request a variety of services performed by volunteers for free. Things such as major home repairs, home inspections and home health care for seniors provided by third party companies may be charged at a reduced rate. In Bannockburn they address the needs of their residents with volunteers too, emphasizing an intergenerational approach. Services can be arranged through the website Lotsahelpinghands.com.

The importance of the social aspect cannot be understated. From our own experience at Care for You over the past 14 years, we have seen a number of our clients with Alzheimer’s disease and dementia who enter nursing homes quickly deteriorate and die. When your memory is already impaired and you are suddenly taken out of your familiar surroundings, it deals a death blow to your soul. The value of being recognized at local businesses and feeling like a part or your community and neighborhood is truly something we all need. To quote Louis Tenenbaum, a leading authority on Aging in Place, “It requires a custom model of care that is about YOU. Aging in Place is based in the sanctity of dignity, respect and control- independence, your home is your castle. These important human and American values are almost impossible to maintain in the dehumanizing, medical model of ‘senior housing’.”

A study, “The Impact of Professionally Conducted Cultural Programs on the Physical Health, Mental Health, and Social Functioning of Older Adults,” complete with its outcomes, was published in The Gerontologist, Vol. 46, No. 6, 2006. Gene D. Cohen, MD, PhD, was the lead investigator on this study.

The intent of the study was to measure the impact, if any, of professionally conducted community-based cultural programs on the physical and mental health, and social activities of individuals aged 65 and older. The study was conducted in three geographic locations throughout the country, including greater Washington, DC.

The study solicited participants through mailed requests to be part of a study “to assess the general state of health and mental health as well as involvement in overall group activities of older adults living in the community. The notice for the intervention group differed only in that it sought singers for a chorale; no singing experience was required..”

Findings on the physical health side of the study included several that were statistically significant:

Self-Rating of Overall health: Over the course of the study, the intervention groups’ assessments of their health increased while the comparison groups’ decreased.

Number of Doctor Visits During the Past 12 Months: Both the intervention and comparison groups’ number of visits increased, but he comparison groups’ visits increased by more.

Number of Over-the-Counter Medications: Again, both groups’ OTC medications increased, but the comparison groups’ increase was greater.

Instances of Falls During the Past 12 Months: On this measure, the intervention groups’ numbers declined, but the comparison groups’ numbers increased.

The study also found that the intervention group, “reported a trend toward increased activities 12 month post-baseline, whereas the comparison group reported a decline during this same time period.” These differences are especially interesting in that the mean age of the participants was nearly 80 – greater than life expectancy.

Image via Wikipedia

Getting parents help when they need it is part of being an adult child and a caregiver. We have to be their advocate when they cannot, or will not, be one for themselves. At the same time, we have to create healthy boundaries for ourselves. It is possible that you will eventually decide sharing a home is not the best situation for the two of you.

“I like the way you described your mom — funny, generous, and great company.” That’s a good place to start, focusing on what’s good about her and her life. Thinking about the ways she benefits you even now helps especially when things get harried and you get overwhelmed with all that “stuff” around you.

Before you can tackle the compulsive hoarding issue, you do need to know what you’re dealing with. The causes of compulsive hoarding can be psychological or neurological. You really need a physician such as a neurologist or a mental health professional to diagnose your mom. An expert can also give you practical advice on how to keep a compulsive hoarding mother safe.

In addition to any prescribed therapy and medication, I recommend encouraging her to visit a bereavement counselor, support group, or both. Losing a son and husband can have a profound, possibly devastating, effect. She might also be suffering from depression. As much as you love her, you can’t be her all-in-all. If you’re having a difficult time with grieving over your own losses, share that and tell her that you’d like to find grief support together.

Ask yourself, are there ways that you enable her? Do you take her to garage sales because she likes to go — even though you know it feeds into her hoarding? Do you give her attention for her behavior, even if it’s negative attention, by complaining constantly about the “stuff?” It’s really hard to look at what our role is in our loved ones’ unhealthy choices, but we often feed into their lives just as they feed into ours.
Even with help, the compulsive hoarding problem is not going to go away fast. You are still going to be tested and frustrated. Be consistent. If she needs medication, make sure she takes it. If she needs therapy, make sure she gets there. She will be looking for you to forget, get tired, and give up. So don’t.

You can do these things whether or not you are living right there with her. If you do decide to keep living together, is there a way to create your own space? Could you have a bedroom door you can shut (perhaps even lock) when you are not home, and your own private bath? That could make a big difference while you work on the issue with professional help. Some caregivers mark off with blue tape a “clear zone” of, say, three feet around a living area.

I also find that focusing on the word “beauty” is a less-insulting way to discuss the clutter. Try telling your mom you need to clear the table so the two of you can have a space of beauty to eat your dinner.
Continue to protect a separate life from your mother. “When I cared for my mom, I learned that I simply could not meet all the physical and emotional needs of another human being — it was too much.” So ask for help. The more we create a circle of care around our loved ones, the more we help enrich their lives — and open our hearts to others.

Often we learn from our parents in unexpected ways. Perhaps your “life lesson” here is to learn to create a sense of space and serenity in your heart no matter what your outside surroundings may look like. I have known people who lived with hoarders and later took up feng shui or became a professional organizer! What I am saying is, try to glean something good from being with your mom. That is what we have to do with life. Forget making lemonade out of lemons —make margaritas!

Author: Carol O’Dell, www.Caring.com

http://www.caring.com/blogs/dear-family-advisor/moms-a-hoarder-whose-stuff-is-keeping-us-apart

Planning Ahead

Have you ever said or heard others say, “I don’t ever want to be a burden to my children”? It is a common thought, but what have you done to insure that you will not be? If your parents share these sentiments, now is the time to initiate dialogue with them before it is too late. The inevitable future includes aging for all of us.

Many of us, seniors included, will be called upon as caregivers of our loved ones. The first “baby boomers,” the group born after World War II ended, are just entering their 60s. It is likely that this group of Americans may spend more years caring for elderly parents than they spend raising children. They truly exemplify the sandwich generation.

Caregiving can be complicated. Finding resources and making decisions is not an easy task. The entire family should be addressing caregiving issues. If elderly parents are capable, by all means, involve them in an open discussion of issues directly related to their future. If they seem reluctant at first, persist. It is far better to “air” their fears and yours now, while they are still capable. Be sure to involve all siblings in the discussion, even the “long distance” children. If they cannot be there, keep them well informed, preferably in writing. Email, informal letters, serve well.

Questions to ask….

General Issues

• Who will be the principal caregiver?
• What involvement will siblings have?
• Which responsibilities can be shared? By whom? (Supervising medications, shopping, doctors, day care, etc.)
• Is communication open and honest between caregiver and elderly person?
• Do family members share feelings and information?

Financial and Legal

• What is the person’s financial situation?
• Is there a list of assets, their value, and their locations?
• Is there a private pension? Is it mailed directly to a bank? Which one?
• What is the social security amount? Is it directly deposited? Where?
• Are there other sources of income? Example: Annuities, stocks, interest, IRAs, CDs, safe deposit box.
• What are the debts? Mortgages, car payment?
• Is there a need to apply for SSI, Supplementary Security Income?
• Is medical coverage adequate?
• Is there a prescription plan? Long-term care insurance? Medicare? Medicaid?
• Has anyone consulted an eldercare attorney?
• Has the elderly person transferred any assets?
• What is the “time frame” in your state for transferring assets before being qualified for Medicaid?
• Is there a trust, a will, a living will, a medical power of attorney, a durable power of attorney that lasts beyond incapacitation? Where are they kept?
• Is there an insurance policy? Where is it kept?

Housing

• What housing options are possible?
• What can be done to keep the person in their home?
• Can the elderly person live alone?
• Should we be looking for companion care?
• What about an assisted living facility?
• Is a nursing facility or a personal care facility needed?
• Is senior housing or shared housing an option?
• Is a life care community or a continuing care retirement community (CCRC) feasible?
• Has the person or family any “up-front money” available for some period of personal pay for care at home or in a facility?

Physical Condition

• Has the person had a recent physical? Is there a family doctor? Has a geriatric assessment been ordered?
• What medications are being taken? By prescription? Over the counter?
• Ask the pharmacist or doctor if any medications interactions should be avoided. Ask if any meds should not be taken together. Any foods avoided.

After Death

• Are there any pre-paid funeral expenses? Any specific funeral wishes?
• What funeral home? A viewing? A family plot?
• Cremation? Any specific desires?
• Can you discuss death with the person for whom you are caring? Why not? Most of the elderly do not fear discussion of death.

(Source: CAPS, Children of Aging Parents, http://www.caps4caregivers.org)

The hallway looked like any other. But the smell was overpowering the moment the elevator doors opened. Getting into apartment 411 was like going into another world. The stacks of garbage and trash were so tall and so closely crammed together that there was almost no way to open the front door. Hundreds of soda bottles filled with a gold liquid were throughout his home – it wasn’t soda….

Hoarding:

1. the acquisition of, and failure to discard, a large number of possessions that appear to be useless or of limited value;
2. living spaces sufficiently cluttered so as to preclude activities for which those spaces were designed; and
3. significant distress or impairment in functioning caused by the hoarding.

Our first encounter with the compulsive hoarding phenomenon was in 1998 with Mrs. X, a widow whose apartment management had notified residents that new windows were to be installed. Residents had to remove all furniture and other objects three feet from windows in front and two feet on either side. When we arrived, we found an apartment so filled with hoarding clutter and accumulations it was nearly impossible to enter or get around.

The shocked question was, “Where do you expect us to put anything we move?” Boxes filled with paper – newspapers, invitations to exhibitions, letters, junk mail, tissue, stuff – were stacked all the way to the ceiling next to the walls, and waist to chest high throughout the rest of the apartment. Other accumulations were scattered about. There were only narrow paths from room to room, and not enough clearance for two people to pass. We did not have to do anything in either the kitchen or bathroom, but both were so filthy any normal person wouldn’t use them.

Then Mrs. X took us to her second apartment – she’d rented it in the same building after she couldn’t get anything more in her first apartment. The second apartment looked just like the first.

We didn’t even have a word for what we saw. Today if one Googles™ ‘hoarding,’ nearly three million hits will result, yet even a few years ago little was in the mainstream media about this obsessive compulsive disorder. Care for You is not in the business of medical diagnosis, but we certainly knew that what we were seeing was abnormal.

Immediate and Long-Term Consequences of Compulsive Hoarding

After completing the work for the day, we chatted awhile, getting to know her. We also pressed our case that she continue using our services. We stood the whole time because there was only one place to sit and she needed it. She was worried that management would discover her mess and evict her.

Mrs. X agreed to have a Care for You Companion visit one day per week for three hours to help with daily chores. However, upon arriving Mrs. X would not allow the Companion to do anything. After about six months we quit trying, as companions were unwilling to go there and stand in clutter and filth, doing nothing. And Mrs. X decided she didn’t need our help anymore.

Mrs. X, six years later: The social work agency called with another hoarder case. A lady had fallen in her apartment and broken her hip. The stacks of accumulations had fallen on her, trapping her for two days before someone in the hall heard her weak cries. When the EMT arrived, they could not get in and contacted the building management before breaking down the door. They also had difficulty getting her out of the apartment.

Upon release from the hospital, she entered a rehabilitation facility for several weeks. Mrs. X still had the two apartments. Both were still hoarded, worse than when we worked with her in 1998. Over an intense four-week period, Care for You sorted the garbage from the real possessions, hauled innumerable loads of trash, and cleaned her apartments so she could return home. In the process we unearthed a bed in one living room that we didn’t know existed, her Will, stock certificates, uncashed checks from years ago, and over $6,000 in cash – between papers, in canisters and jars, under cushions, as bookmarks…. What about Mrs. X? She wasn’t able to recover from the severity of the injury, the two days without food and water and lying in her own waste. She died within two months, and never returned home.

Mrs. X was the first of our clients to die because she refused help, and no one was there to ensure that the problem was addressed. Over the years, three other clients have been killed by their accumulations. Unlike Mrs. X, they all lived in single-family homes, with no shared walls with anyone else. Therefore, health and fire were not able to issue citations in a timely manner. When no one else is endangered, the legal process is long and slow at best – it’s not against the law to be a hoarder. In two cases the family was not able to withstand the violent, searing attacks of the parents. They backed off, traumatized themselves – “it’s their life, they’ve been like this as long as I can remember, that’s why I left, I’m not taking it any more.” In the third case there was no family. We worked with a medical social worker who was familiar with the situation to try to prevent what we knew was life threatening. We had no authority, the law had no authority. What we feared would happen, did. So, by the individuals “winning,” they lost their lives.

We’ve learned a lot since then. In upcoming installments we’ll discuss what compulsive hoarding syndrome is, the professional team needed to deal with it, case studies, legal issues, government interests, and how to maintain the progress once dehoarding has been achieved.

(Hoarding definition from Frost, R.O., & Hartl, T.L. (1996). A cognitive-behavioral model of compulsive hoarding. Behavior Research and Therapy, 34, 341-350)

While textbook symptoms of Post Traumatic Stress Syndrome, these are common experiences of The Caregiver. The dirty little secret of the burdens on Caregivers and the effects of these burdens is often not only not spoken of, they’re more often not even realized. Mom, dad, sister, brother is a rock, she can do anything, he’s always done everything. She’s strong, he’s proud. But Wonder Woman has lost her bracelets and Superman has lost his cape – and they can’t find them. Super Caregivers are in trouble.

They’re depressed, they’re isolated, they’re angry. They feel trapped – How long is this going to go on? Is this the rest of my life? They feel hopeless – all that I’ve worked for, lived for, is gone, and it’s not coming back. They feel like failures – if I were a good husband, wife, son, daughter, I could do this with grace, patience, strength, love. And they feel so guilty – How can I feel like this when I’m needed most? Why am I so mad at him? He can’t help it, he’s sick. Why does her illness infuriate me? She didn’t ask for this. What kind of selfish monster am I?

What’s Going On?

For starters, we’re living longer. In days of yore long-term caregiving wasn’t such a problem because most of us died younger and faster of acute illness and injury. The fabled extended family with grandparents, parents, aunts, uncles, cousins and siblings living within a two-mile radius is exactly that now – fable. For most, families are scattered far and wide. The traditional caregivers – the youngest daughter, the daughter-in-law, the maiden aunt – are working full time, raising children, involved in community activities, maintaining their own houses, caring for many lives. Caregivers now find themselves in the position of doing more, in more demanding situations, for longer periods, with less help. And if they feel they had no choice in taking on the responsibilities, the chances are that they experience greater strain, distress, and resentment.

What Are Some Numbers?
(from the National Family Caregivers Association. Care for You, Inc. is a member)

• 25 % of all U.S. households are already involved in caregiving.
• More than 50 million people provide care for a chronically ill, disabled or aged family member or friend during any given year.
• Caregiving is no longer predominantly a women’s issue. Men now make up 44% of the caregiving population.
• The average length of time spent on caregiving is about eight years, with approximately one third of caregivers providing care for 10 years or more.

• Elderly spousal caregivers with a history of chronic illness themselves have a 63% higher mortality rate than their non-caregiving peers.
• The stress of family caregiving has been shown to impact a person’s immune system for up to three years after their caregiving ends, thus increasing their chances of developing a chronic illness themselves.
• Family caregivers who provide care 36 or more hours weekly are more likely than non-caregivers to experience symptoms of depression or anxiety. For spouses the rate is six times higher; for those caring for a parent the rate is twice as high.
• Family caregivers providing high levels of care have a 51% incidence of sleeplessness and a 41% incidence of back pain.
• 44 % of physicians believe that poor care coordination leads to unnecessary hospitalization, and 24 % stated it can lead to otherwise unnecessary nursing home stays.
• By the year 2030, nearly 150 million Americans will have some type of chronic illness, a 50% increase since 1995.
• Family caregivers who acknowledge their role are more proactive in reaching out for resources and talking with their loved one’s doctor than non-acknowledged caregivers.
• Both male and female children of aging parents make changes at work to accommodate caregiving. Both have modified their schedules (men 54%, women 56%). Both have come in late and/or leave early (men 78%, women 84%) and both have altered their work-related travel (men 38%, women 27%).
• 15 million days are missed from work each year because on long distance caregiving.
• American businesses lose between $11 billion and $29 billion each year due to employees’ need to care for loved ones 50 years of age and older.
• The value of the services family caregivers provide for “free” is estimated to be $257 billion a year. That is twice as much as is actually spent on homecare and nursing home services.

What Can A Caregiver Do?

The most important thing you can do is: TAKE CARE OF YOURSELF. This is not selfish – it is essential. Research consistently shows that the combination of loss, prolonged stress, the physical demands of caregiving, and competing demands on obligations and time place the caregiver at risk for significant health problems as well as an earlier death. If you can’t help yourself, you can’t help anyone else, and everyone loses.

GET HELP. Help can come from community resources, family, friends and professionals. Ask them. Don’t wait until you are overwhelmed and exhausted or your health fails. Reaching out for help when you need it is a sign of personal strength. Many don’t know how to ask for help. You don’t want to “burden” others or admit that you can’t handle everything by yourself. You don’t have to do everything, nor does anyone else. Help them be helpful, help yourself and help your loved one by building your support. Break down requests into specific, simple tasks. Whether a person helps once, once a week, once a month, daily – it’s all helpful, and takes a bit of responsibility off of you.

The National Family Caregivers Association Offers These Tips on How to Ask:

• Consider the person’s abilities and interests. If you know a friend enjoys cooking but dislikes driving, your chances of getting help improve if you ask for help with meal preparation.
• Resist asking the same person repeatedly. Do you keep asking the same person because s/he has trouble saying no?
• Pick the best time to make a request. Timing is important. A person who is tired and stressed might not be available to help out. Wait for a better time.
• Prepare a list of things that need doing. The list might include errands, yard work, a visit with your loved one. Let the “helper” choose what she would like to do.
• Be prepared for hesitance or refusal. It can be upsetting for the caregiver when a person is unable or unwilling to help. But in the long run, it would do more harm to the relationship if the person helps only because he doesn’t want to upset you. To the person who seems hesitant, simply say, “Why don’t you think about it.” Try not to take it personally when a request is turned down. The person is turning down the task, not you. Try not to let a refusal prevent you from asking for help again. The person who refused today may be happy to help at another time.
• Avoid weakening your request. “It’s only a thought, but would you consider staying with Grandma while I went to church?” This request sounds like it’s not very important to you. Use “I” statements to make specific requests: “I would like to go to church on Sunday. Would you stay with Grandma from 9 a.m. until noon?”

TAKE THE LEAD in deciding what needs to be done and who’s doing it. The person who needs caretaking often wants only a certain family member or friend to provide care. Often s/he has made the decisions concerning home and activities for years, and is adamant about continuing to do so. Now, however, s/he can’t do this. S/he may or may not realize this; if s/he does, it can be very frightening. With his or her needs so great, s/he frequently is unable or unwilling to see the extent of these needs and that the caretaker also has needs. S/he as well as the caregiver may think that it is the caregiver’s duty. The person in need may behave in a number of disconcerting ways – such as anger, verbal abuse, crying, withdrawal, depression, shaming – to maintain control and get what s/he wants. There are, however, options. While needs do need to be met, no one person MUST or CAN provide everything all the time.

The most loving thing a caregiver can do is draw the line, non-judgmentally and non-confrontationally, and hold it. The person in need will eventually, usually quickly, see and accept that s/he is not abandoned and uncared for, and the main caregiver has more time and energy to devote to the far deeper needs.

LEARN about the condition your family member is facing and how it may affect his or her behavior, pain level, etc., and how to communicate effectively with doctors.

PROTECT YOUR PERSONAL TIME for something you enjoy or something you have to get done. Your loved one’s needs don’t cancel out your own desires and needs. Even if you do it less frequently, continue doing whatever you’ve always enjoyed – going to church, meeting with friends or family, going to a movie or play, walking the dog, playing cards….

PROTECT YOUR BODY. Give yourself time for exercise, eating well, sleeping enough and personal grooming. Caregivers often do a lot of lifting, pushing, and pulling. Learn the proper ways to do these things and protect your back – ask about going through physical therapy training with your loved one. If you have back (shoulder, arm, etc.) problems, have someone else do this, or assist you.

REWARD YOURSELF. Caregiving is a big job – provide yourself with frequent respite breaks and regular, even if small, rewards.

FIND A SUPPORT GROUP. Use your personal network of family and friends. A support group for caregivers targeted to living with similar issues that you face can provide not only a safe haven, but tips for daily living. There is great strength in knowing you are not alone.

BE OPEN TO TECHNOLOGIES AND IDEAS that promote your loved one’s independence.

WATCH OUT FOR SIGNS OF DEPRESSION (see the beginning of this discussion topic), and get help.

GRIEVE FOR YOUR LOSSES, and then allow yourself to DREAM NEW DREAMS. Consider how you will feel and what you will do after the caregiving ends.

TRUST YOUR INSTINCTS. Most of the time, you’re right.

Do you remember what you had for dinner last night? What about dinner last week? How about the name of your second-grade teacher?

Do you remember where your bedroom door is? How to turn off the stove burner? The way from the mailbox on the corner back to your house? Where you put your glasses? Somebody stole them! What are they doing in your shoes? Do you remember your daughter’s name?

Everyone’s daily routine includes activities like eating, bathing, dressing, and using the bathroom. For people with Alzheimer’s or any other form of dementia, it can become impossible to do such things alone.

De•men•tia – Loss or impairment of mental powers;
from Latin: de – away from + mens – mind

Dementia is literally going away from the mind, as parts of the brain are slowly, gradually destroyed. Two common forms are Alzheimer’s Disease and Vascular Dementia, caused by a series of small strokes. The individual can become unable to perform motor tasks like brushing teeth; interpret sensory signals like hunger or pain; recognize objects, persons, or sounds; or communicate.

These sensory and behavioral conditions can make it very hard for caregivers to care for a loved one. How do you know when someone should eat who isn’t expressing hunger—because he or she cannot find the words or cannot recognize the feeling?

Care for You first began working with Mr. B when he was discharged from a hospital for malnutrition and dehydration. If asked if he was hungry, he never was, because he could no longer sense hunger or thirst.

Why does someone never make it to the bathroom on time? Mr. and Mrs. R both have dementia, both are incontinent. When we began working with them, neither was able to consistently get to the bathroom on time; both just urinated while sitting in their chairs. Not surprisingly, the house smelled of urine and both had skin breakdowns. A person with dementia who doesn’t receive constant care can end up suffering from dehydration or malnutrition or living in unsanitary conditions.

We have experience dealing with the behavioral changes that can accompany dementia. These include:
• Over-stimulation
• Paranoia
• Anger with anything unfamiliar or new
• Wandering
• “Sundowning” (agitation or confusion beginning in late afternoon).

Singly or in combination, behaviors like these can turn any task into a tremendous undertaking. Care for You companions receive initial and on-going training in the care of persons with dementia or Alzheimer’s. They know how to smooth out the many small details of everyday life: by preparing familiar foods on a regular schedule, presenting them one at a time to avoid over-stimulation, manipulating utensils, and helping with regularly scheduled trips to the bathroom.

Our Companions know that people with dementia have trouble understanding the meaning of what is said. However, they are very sensitive to how things are said. An agitated tone can be upsetting. A calm tone can reassure.

Individuals are often confused about reality, often can’t separate the past from the present, may forget who others – or themselves – are. Companions know to avoid arguing about reality with the individual and insist on their version of reality – it may cause more confusion and stress. Instead of saying to Ms W, “Your husband died 20 years ago, he’s not coming home!” Franchette says, “I’m sure he’s working late tonight. Let’s call him later.”

When Ms P asks, again and again, about her doctor’s appointment, instead of saying, “I just told you! Your appointment is at 2 o’clock!” Margaret reassures her and says, “Don’t worry, I’m going, too. I won’t leave without you.”

When Ms P tries to leave the house alone, Margaret uses distraction – Instead of saying, “Where do you think you’re going? You can’t leave by yourself!” she says, “Before you go, could you help me with this for a minute or two?”

When we began working with Mr. M, he had not bathed or changed his clothes for 3 months. The odor was “pretty ripe,” and his assisted living facility was going to evict him. When Mr. M insisted that he had already showered, Doug did not argue with or rush Mr. M – he made them coffee. A few minutes later he made a statement instead of asking a question. Instead of saying, “Are you ready to shower now?” he ran the water and said, “Your shower is ready. Here’s your towel.”

Attention to the mental and emotional needs of individuals is just as important as the physical needs. We call it play, and play is critical. Studies show that daily social interaction can reduce or temper the behavioral changes of individuals affected by dementia. Our experience shows that the more engaged the individual is, the healthier and happier the individual is. We walk, we talk, we paint, we make crafts, we literally sing and dance – it’s calming, focused, short-term…and fun.

It’s often very difficult for the family or caregiver of someone with dementia to realize and understand that their loved one can no longer make logical, reasonable decisions. The individual and the family are used to that person being in control – but dementia isn’t reasonable, and the individual is not able to make complex decisions and maintain the control of before.

Care for You works with families to tailor a routine to their loved one’s needs, whether the individual needs round-the-clock care or only a daily telephone call. Companions can give your loved ones the continuous one-on-one attention and care that will put them (and you) at ease and ensure their well-being. Most of all, we work to preserve your loved one’s dignity, privacy and security.

What questions can a person ask to help answer this big question?

We began talking with her a year ago. She was 86, spry, mentally sharp, unsteady on her feet, used a walker, and had fallen “maybe a couple of times, but wasn’t hurt, just some bruises.” Her house was seriously cluttered. She couldn’t get around using the walker because there wasn’t room for it. She didn’t want to do anything until she talked with “her boys.” Her boys were in their 50s, with families, jobs, homes. The son who lived nearby came to his mom’s 3-4 times a week. The son who lived out of state came one weekend a month. The boys said, “Mom, you need some help, more than we can give.” Mom said she’d think about it, maybe next month. Eleven months passed.

A meeting was set up for Monday among her, her boys and Care For You.

The boys had just come from Suburban Hospital. She’d fallen the previous Thursday evening, wasn’t found until Saturday morning. The injury was severe. Her right leg was amputated at the thigh. C-diff infection set in. We talked about rehab, building a ramp, refitting the bathroom, de-cluttering. Three weeks later she died.

Sad. Frustrating. Avoidable. …and not uncommon. Most seniors want to stay in their homes* – fiercely. Age in place. Keep control. Remain independent. After 14 years professionally, and a decade personally, we’ve learned the ultimate irony: the biggest threat to someone losing their independence, and sometimes life, is fear of losing independence.

Determining if and when your loved one needs caregiving assistance demands objective observation. Usually, it’s defined by FUNCTIONAL ABILITY, not by age. It’s important to:

• Ask revealing questions,
• Pay attention to the telltale signs,
• Look for patterns of consistent neglect.

The following questions are a tool to help determine if in-home care is needed. Just as difficult, they can help direct how to talk about it. If the answer to Number 1 – “Is it important to the person to continue to live independently in their own home?” – is yes, then the focus moves to:

• What is threatening the person’s safety?
• Why can’t s/he stay home?
• What has to be done to remove the threats?

How do you take stock of the “situation” – your loved one’s, and yours?