Aging Parents: 7 Warning Signs of Health Problems and Taking Action

(Mayo Clinic) Concerned about your aging parents’ health? Use this guide to gauge how your aging parents are doing — and what to do if they need help.

As your parents get older, how can you be sure they’re successfully taking care of themselves and staying healthy? When you visit your aging parents, ask yourself the following questions. Then, if necessary, take steps to help your aging parents maintain their independence.

350x1.  Are your aging parents taking care of themselves?

Pay attention to your parents’ appearance. Are their clothes clean? Do they appear to be taking good care of themselves? Failure to keep up with daily routines — such as bathing, tooth brushing and other basic grooming — could indicate dementia, depression or physical impairments.

Also pay attention to your parents’ home. Are the lights working? Is the heat on? Are the bathrooms clean? Is the yard overgrown? Any big changes in the way your parents do things around the house could provide clues to their health. For example, scorched pots could mean your parents are forgetting about food cooking on the stove. Neglected housework could be a sign of depression, dementia or other concerns.

2.  Are your aging parents experiencing memory loss?

Everyone forgets things from time to time. Modest memory problems are a fairly common part of aging, and sometimes medication side effects or underlying conditions contribute to memory loss. There’s a difference, though, between normal changes in memory and the type of memory loss associated with Alzheimer’s disease and other types of dementia. Consider your aging parents. Are memory changes limited to misplaced glasses or an occasionally forgotten appointment? Or are memory changes more concerning, such as forgetting common words when speaking, getting lost in familiar neighborhoods or being unable to follow directions? If you’re concerned about memory loss for either of your aging parents, schedule an evaluation with the doctor.

3.  Are your aging parents safe in their home?

Take a look around your parents’ home, keeping an eye out for any red flags. Do your parents have difficulty navigating a narrow stairway? Has either parent fallen recently? Are they able to read directions on medication containers?

4.  Are your aging parents safe on the road?

Driving can sometimes be challenging for older adults. If your aging parents become confused while driving or you’re concerned about their ability to drive safely, it might be time to stop driving. To help your aging parents maintain their independence, suggest other transportation options — such as taking the bus, using a van service, hiring a driver or taking advantage of other local transportation options.

5.  Have your aging parents lost weight?

Losing weight without trying could be a sign that something’s wrong. For aging parents, weight loss could be related to many factors, including:

  • Difficulty cooking. Your parents could be having difficulty finding the energy to cook, grasping the tools necessary to cook, or reading labels or directions on food products.
  • Loss of taste or smell. Your parents might not be interested in eating if food doesn’t taste or smell as good as it used to.
  • Underlying conditions. Sometimes weight loss indicates a serious underlying condition, such as malnutrition, dementia, depression or cancer.

If you’re concerned about unexplained weight loss for either of your aging parents, schedule an evaluation with the doctor.

6.  Are your aging parents in good spirits?

Note your parents’ moods and ask how they’re feeling. A drastically different mood or outlook could be a sign of depression or other health concerns. Also talk to your parents about their activities. Are they connecting with friends? Have they maintained interest in hobbies and other daily activities? Are they involved in organizations or clubs?

If you’re concerned about your parents’ moods, schedule an evaluation. Depression can be treated at any age.

7.  Are your aging parents able to get around?

Pay attention to how your parents are walking. Are they reluctant or unable to walk usual distances? Is knee or hip arthritis making it difficult to get around the house? Would either parent benefit from a cane or walker? Issues such as muscle weakness and joint pain can make it difficult to move around as well. If your parents are unsteady on their feet, they might be at risk of falling — a major cause of disability among older adults.

Taking action

There are many steps you can take to ensure your aging parents’ health and well-being, even if you live far away. For example:

  • Share your concerns with your parents. Talk to your parents openly and honestly. Knowing that you’re concerned about their health might give your parents the motivation they need to see a doctor or make other changes. Consider including other people who care about your parents in the conversation, such as other loved ones, close friends or clergy.
  • Encourage regular medical checkups. If you’re worried about a parent’s weight loss, depressed mood, or other signs and symptoms, encourage your parent to schedule a doctor’s visit. You might offer to schedule the visit yourself or to accompany your parent to the doctor — or to find someone else to attend the visit. Ask about follow-up visits as well.
  • Address safety issues. Point out any potential safety issues to your parents — then make a plan to address the problems. For example, perhaps your parents could use assistive devices to help them reach items on high shelves or to help them stay steady on their feet. A higher toilet seat or handrails in the bathroom might help prevent falls.
  • Consider home care services. If your aging parents are having trouble taking care of themselves, perhaps you could hire someone to clean the house and run errands. A home health care aide could help your parents with daily activities such as bathing and dressing. You might also consider Meals on Wheels or other community services. If remaining at home is too challenging, you might suggest moving to an assisted living facility.
  • Contact the doctor for guidance. If your parents dismiss your concerns, consider contacting the doctor directly. Your insights can help the doctor understand what to look for during upcoming visits. Keep in mind that the doctor might need to verify that he or she has permission to speak with you about your parents’ care, which might include a signed form or waiver from your parents.
  • Seek help from local agencies. Your local agency on aging — which you can find using the Eldercare Locator, a public service of the Administration on Aging — can connect you with services in your parents’ area. For example, the county in which your parents live might have social workers who can evaluate your parents’ needs and put them in touch with pertinent services, such as home care workers and help with meals and transportation.

Sometimes aging parents won’t admit they need help around the house, and others don’t realize they need help. That’s where you come in. Remind your parents that you care about them and that you want to do what’s best to promote their health and well-being, both today and in the months and years to come.

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Caregiving and Depression

(Family Caregiver Alliance) Could the sadness, loneliness or anger you feel today be a warning sign of depression? It’s possible. It is not unusual for caregivers to develop mild or more serious depression as a result of the constant demands they face in providing care.

Caregiving does not cause depression, nor will everyone who provides care experience the negative feelings that go with depression. But in an effort to provide the best possible care for a family member or friend, caregivers often sacrifice their own physical and emotional needs and the emotional and physical experiences involved with providing care can strain even the most capable person. The resulting feelings of anger, anxiety, sadness, isolation, exhaustion—and then guilt for having these feelings—can exact a heavy toll.

Everyone has negative feelings that come and go over time, but when these feelings become more intense and leave caregivers totally drained of energy, crying frequently or easily angered by their loved one or other people, it may well be a warning sign of depression. Concerns about depression arise when the sadness and crying don’t go away or when those negative feelings are unrelenting.

Unfortunately, feelings of depression are often seen as a sign of weakness rather than a sign that something is out of balance. Comments such as “snap out of it” or “it’s all in your head” are not helpful, and reflect a belief that mental health concerns are not real. Ignoring or denying your feelings will not make them go away.

Early attention to symptoms of depression through exercise, a healthy diet, positive support of family and friends, or consultation with a trained health or mental health professional may help to prevent the development of a more serious depression over time.

Symptoms of Depression

People experience depression in different ways. Some may feel a general low-level sadness for months, while others suffer a more sudden and intense negative change in their outlook. The type and degree of symptoms vary by individual and can change over time. Consider these common symptoms of depression. Have you experienced any of the following for longer than two weeks?

  • A change in eating habits resulting in unwanted weight gain or loss
  • A change in sleep patterns—too much sleep or not enough
  • Feeling tired all the time
  • A loss of interest in people and/or activities that once brought you pleasure
  • Becoming easily agitated or angered
  • Feeling that nothing you do is good enough
  • Thoughts of death or suicide, or attempting suicide
  • Ongoing physical symptoms that do not respond to treatment, such as headaches, digestive disorders and chronic pain.

Special Caregiver Concerns

What do lack of sleep, dementia and whether you are male or female have in common? Each can contribute in its own way to a caregiver’s increased risk for depression.

Dementia and Care

Researchers have found that a person who provides care for someone with dementia is twice as likely to suffer from depression as a person providing care for someone without dementia. The more severe the case of dementia such as that caused by Alzheimer’s disease, the more likely the caregiver is to experience depression. It is critical for caregivers, especially in these situations, to receive consistent and dependable support.

  • Caring for a person with dementia can be all consuming. It is different from other types of caregiving. Not only do caregivers spend significantly more hours per week providing care, they report more employment problems, personal stress, mental and physical health problems, less time to do the things they enjoy, less time to spend with other family members, and more family conflict than nondementia caregivers. As stressful as the deterioration of a loved one’s mental and physical abilities may be for the caregiver, dealing with dementia-related behavior is an even bigger contributor to developing symptoms of depression. Dementia-related symptoms such as wandering, agitation, hoarding and embarrassing conduct makes every day challenging and makes it harder for a caregiver to get rest or assistance in providing care.
  • Women experience depression at a higher rate than men. Women, primarily wives and daughters, provide the majority of caregiving. In the United States, approximately 12 million women experience clinical depression each year, at approximately twice the rate of men. A National Mental Health Association survey on the public’s attitude and beliefs about clinical depression found that more than one-half of women surveyed still believe it is “normal” for a woman to be depressed during menopause.

The study also found that many women do not seek treatment for depression because they are embarrassed or in denial about being depressed. In fact, 41% of women surveyed cited embarrassment or shame as barriers to treatment.

  • Men who are caregivers deal with depression differently. Men are less likely to admit to depression and doctors are less likely to diagnose depression in men. Men will more often “self treat” their depressive symptoms of anger, irritability or powerlessness with alcohol or overwork. Although male caregivers tend to be more willing than female caregivers to hire outside help for assistance with home care duties, they tend to have fewer friends to confide in or positive activities outside the home. The assumption that depressive symptoms are a sign of weakness can make it especially difficult for men to seek help.
  • Lack of sleep contributes to depression. While sleep needs vary, most people need eight hours a day. Loss of sleep as a result of caring for a loved one can lead to serious depression. The important thing to remember is that even though you may not be able to get your loved one to rest throughout the night, you can arrange to get much needed sleep. Hiring a respite worker to be with your loved one while you take a nap or finding a care center or scheduling a stay over with another family member for a few nights are ways to keep your caregiving commitment while getting the sleep you need.
  • Depression can persist after placement in a care facility. Making the decision to move a loved one to a care center is very stressful. While many caregivers are finally able to catch up on much needed rest, loneliness, guilt and monitoring the care a loved one receives in this new location can add new stress. Many caregivers feel depressed at the time of placement and some continue to feel depressed for a long time after.

People assume that once caregiving is over, the stress from providing hands-on care will go away. Yet, researchers found that even three years after the death of a spouse with dementia, some former caregivers continued to experience depression and loneliness. In an effort to return their life to normal, former caregivers may need to seek out help for depression as well.

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Caregiver Label Doesn’t Define You, But Helps Recognize What You Do

(Mayo Clinic) Last week I reconnected with a lovely couple I met a while back, Nick and Marie. It’s apparent they’ve been in a caring relationship with one another for many, many years. Yet, when their doctor recently addressed Marie as caregiver (Nick is living with early stage Alzheimer’s), Marie was a bit rattled, stating, “I’m a wife.”

So I wondered, when does the label caregiver replace wife? If your husband or wife receives a diagnosis of Alzheimer’s, do you (the spouse) leave the doctor’s office with a new label, title and role? When do spouses label themselves as caregive

To a great degree we rely on labels to define ourselves. Labels connect us to our identity and self-worth: I’m a wife, I’m a husband, I’m a father, I’m a daughter, I’m an artist, I’m a manager, I’m a vegetarian. Often these labels don’t necessarily reflect who we are as much as what we do, what our social status is, or how we function in life.

In a society that puts so much emphasis on the desire to be something, each of us grapples with figuring out exactly who we are in relation to our world. Importantly, the language or words we use to describe ourselves largely influences the way we think. And the way we think drives our emotions, our expectations and our behaviors.

In the case of Marie, instead of “being” a caregiver, she chooses to see herself as a wife in a caring or supportive role. Perhaps then caregiving or caregiver is a verb and not a definition — one that describes your relationship to other people, not who you are nor your relationship with yourself.

The ability to see ourselves beyond our jobs, roles, labels and titles and as the real, genuine substance of who we are is defined as the authentic self. It’s who you are at your absolute core, not defined by anything external. Authentic self is all of the things that are uniquely yours and need expression.

For those in a caregiving role, faced with never-ending tasks, a sense of true self is often diluted and quite possibly something that gets lost early on. The path to authentic self may be somewhere between who you are and the one you are caring for.

Maybe it’s the “golden mean” (Aristotle anyone?) between the extremes of selfish and selfless — the balance that rises out of compassion and loving care, and ends well before neglecting your own needs. It’s an inner sense that you matter, that you deserve to be healthy and whole just as much as the person you’re caring for.

I think many of you would agree that you don’t want caregiving to define who you are. However, identifying yourself in a caregiving role as Marie does is a good for you. By identifying yourself in a caregiving role or as a caregiver you begin to pay attention to information, resources and services that can help you.

Most importantly, you become part of a large group of a people with common issues, needs and concerns. You begin to build recognition not of who you are, but of what you do.

When we name and label a role that we have, we validate our experiences and can nurture our feelings. We say to the world: Here I am, acknowledge me, hear me, support me, I matter.

Today you are You,
that is truer than true.
There is no one alive
who is Youer than You.–Dr. Seuss

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Alzheimer’s Disease: The Magic of Pets

(BrightFocus Foundation) Walk into many long-term care facilities these days, and one of the first things that you might see is a dog, one that is often times flopped down at the feet of a resident in the main area of the facility. The dog looks as comfortable and relaxed as could be, and so too, does the resident.

Whether it’s a big floppy dog, a bird, a cat, or even a fish aquarium, the benefits of having a pet for one with Alzheimer’s or other dementia are numerous. Pets bring great benefits to all of us—companionship, unconditional love, and fun.

pet_therapy_300_X_200By their very nature, pets do not judge, and they are not critical. And for someone with dementia, those qualities make them a good companion. Their very presence can help reduce the effects of dementia—anxiety, agitation, irritability, depression, and loneliness. By their friendliness and non-threatening way, pets can help a dementia patient be more interactive, when sometimes they are not able to do so in social settings with other adults.

Resident Dog in the Alzheimer’s Special Care Unit Helps with Problem Behaviors

In a 2002 study conducted on an Alzheimer’s special care unit, researchers set out to determine the effect of a resident dog (versus a visiting dog) on behavior.1 Resident’s behavior during the day and during the evening was measured both during the week before the dog was placed on the unit, and then for four weeks following the dog’s arrival. Though no significant behavior changes occurred on the evening shift, the day shift participants showed significantly fewer behavior problems during the four weeks of the study.

Nutrition Can Improve Too

The nutritional benefits of therapy pets on Alzheimer’s patients have been studied and shown to improve nutritional intake. In a 2002 study2 conducted by researchers at Purdue University, fish aquariums were used with 62 Alzheimer’s disease patients on a daily basis over a two week treatment period, and then weekly for a six-week period.

The outcome: Nutritional intake increased during the first two weeks, and continued to do so during the next six week period.  The patients gained an average of 1.65 pounds, and required less nutritional supplementation, thus reducing the overall costs of their care.

At Home with Pets

While most studies about pet-assisted therapy have been conducted in long-term care facilities, the same benefits can be obtained with a pet in the home. Companionship, reducing anxiety and agitation, an excuse to get exercise, and improving interactions and socialization remain benefits of a pet in the home. There are some considerations to remember when it comes to a pet at home though. Four footed pets can be tripping hazards for the elderly, so that must be considered.

And if the person with Alzheimer’s cannot remember to feed the pet, someone else must be sure to do so. The same is true for keeping up with licenses, grooming, and shots.  Allergic to pet hair?  Perhaps a fish tank would be a good option in that case. The important thing is to match the pet with the abilities of the one with Alzheimer’s, and have someone else on hand as a backup to assist with caring for the pet.

Wherever the setting, and whatever the kind of animal, the magic of a favorite pet remains. They can make a big difference in the daily life of one with Alzheimer’s or other dementia.

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Coping After the Loss of a Spouse

(Well Spouse) For twelve years, my wife, Dolores, struggled with the ravages of Parkinson’s Disease.  It took a toll on her mind as well as her body.  During that time, I served as her primary caregiver.  It was my job, 24 hours a day and seven days a week – a difficult but rewarding job.

But the time came when my services as a caregiver were no longer required, when she passed away unexpectedly in June of 2012.  All of a sudden, I was forced to take a new job – one I was neither prepared nor equipped to handle: the job of being alone after nearly 54 years of marriage.

Just as I had to learn how to be a caregiver, I now needed to learn how to grieve and to adjust to a life without my wife.  The new job was even more difficult because I had so many conflicting emotions – shock, disbelief, anger, sadness, loneliness – and some loss of identity from the recognition that I was no longer the most important person in someone else’s life.

A special challenge was dealing with all these issues at once.  Some have an immediate impact and some linger for extended periods of time.  In addition to these struggles, I needed to recognize that while I had lost my spouse, my children had lost their mother.  Even though they are adults, they needed support from me as they too, grieved.  I felt overwhelmed on more than one occasion.  Hopefully, we will all be available to help support each other as we go through the grieving stages, recognizing that the process will be different for each one of us.

A year and a half after my wife’s death, I can report that I have made progress.  In the past 18 months, I have learned a lot about my new position.  Slowly, I’ve grown more adept at it, although it has never been easy.  Dolores had been a part of my life for more than half a century.

The noted psychiatrist, Dr. Elisabeth Kubler-Ross, in her 1969 book “Death and Dying” identified five stages of grief.  These are denial, anger, bargaining, depression and acceptance.   Looking back over the past year and a half, I can see that I went through all of these stages at one time or another.  Grieving is a very personal experience and it is different for everyone who has lost a significant person in his or her life, but I found things that helped me and I want to share some of those.

***

I learned very quickly that I could not grieve alone.  I needed someone that I could talk with, whom I could trust – someone who was a good listener, non-judgmental, and available when I felt the need to talk.  My goal was to understand the multiple conflicting feelings that I was experiencing and not try to deal with all of them at the same time.  This person may be a close friend, family member, minister or counselor.  In fact, it did take more than one person to fill all  these roles.

One of the first emotions that I had to deal with was anger.  Not because my wife had been taken from me so suddenly – I would not have wanted her to suffer – but because she had been stricken with Parkinson’s Disease in the first place.  My anger got so intense that I could not sleep.  Finally, I made an appointment with our priest to talk about it.  In our first session, we talked about the anger that I was experiencing and other topics relating to how I was coping with losing her.  The most important aspect of this meeting was that, after it was over, I wasn’t angry any more.  We had a few more meetings that were also helpful for me.

In addition to having several confidants (some very good friends as well as the priest), I also relied on a network of other friends to help get on with the process of living.  As the primary caregiver for my wife, I had become isolated from much of our former social group.  It was up to me to initiate contact with others to let them know that I was interested in social activities.  I rejoined a group of golfers that I had played with in the past.  I started having breakfast with a group from church on Sunday mornings and I frequently walked in my neighborhood with a close friend.  All of these activities were beneficial, even therapeutic for me.

I realized that while I was busy caring for my wife, new families had moved into our neighborhood whom I had not met.  With more than a little encouragement, I hosted a neighborhood gathering at my home.  The act of planning and organizing it pushed me  a little out of my normal comfort zone.  The event proved to be a success, as I got acquainted with more of my neighbors and they with each other.  I made some new friends, and I think that it also helped bring our neighborhood together a little.

There is no question that doing things with other people is essential, but I learned that it was equally important to develop interests of my own.  For me, remaining active and busy was important for my survival.  The routine tasks of taking care of the house and yard helped fill some of the daytime hours.  Home projects were also helpful.

I rediscovered the importance of exercise – walking, riding a bicycle, golfing, working in the yard.  Anything that required movement and focus helped me.  I acquired an MP3 player and, with some help from my oldest grandson, loaded music onto it so I had something to listen to while I walked.

After the chores were done, I had plenty of time to read, listen to music and watch movies on TV – other pastimes that I had put aside due to the fulltime task of caregiving.  I started reading again – a mixture of fiction and non-fiction – something that I had not done in a long time.  I also caught up on some overdue letter writing, starting with thank-you notes to everyone who had sent cards of sympathy or flowers in memory of Dolores or food to help us get through the funeral period.  I also kept in touch with other friends through e-mail messages.

I have never been one who enjoyed a special hobby, other than participating in sports, but I felt the need to do something that mattered to me, something that required thought and energy and a little creativity.  I came up with the idea of generating a history of the life that my wife and I had together.

Over the course of several months, I put together a scrapbook of photos of her and us and our family and friends, including special events and activities.  I wrote captions to describe the pictures and asked others to contribute their memories, and everything ended up in the book.  It helped me remember the good times we had together and it gave me something to share with everyone who knew her.  It became a beautiful tribute, and it continues to comfort me.  It will be there for my children and grandchildren when I am no longer around.  My children have asked me to write about my youth and some of my family activities, and I intend to do that as well.

A good friend suggested another project for me.  I had faced numerous challenges during the years that I cared for Dolores, and my friend suggested that my experiences might help others going through the same situations.  I enjoy writing, so I began putting together an article about the problems I faced and the solutions I found while providing that care.  The article is a comprehensive summary of safety considerations, caring activities and information about pertinent legal documents.  Writing it gave me a focus and a reason to believe that I could do something, in my wife’s memory that could benefit people who had the same challenges that I faced.  I submitted the article for publication online and had a very good response – it gave me a real lift.

As Parkinson’s took its toll on Dolores, our world became smaller and smaller.  For the last year or so of her life, she was unable to travel, so we stayed home.  After she passed away, our son, Richard, encouraged me to visit him and his partner in Seattle – my own hometown.  I hadn’t visited there in many years, though my brother and his family still live there as well as my son.  I did visit Seattle, and reconnected with a cousin and a few old friends as well.  i made two other trips out west to participate in special events.

Nearer to home, I’ve become closer to my younger daughter, Doris, and her family, who live only ten miles away.  It has been a pleasure to spend more time with my local grandsons and granddaughter.  They all play soccer and I have gone to watch some of their games.  I am also helping them get introduced to skiing.  I have dinner with Doris and the family about once a week and I usually make the dessert for that meal (I feel useful and it helps her with the meal preparation).  I keep in touch with Janet (my older daughter) and Richard by phone, on a regular basis.

Holidays are still difficult.  On our wedding anniversary and on my wife’s birthday, i can’t help but remember previous events on those days.  I visit the cemetery and take flowers – and talk to Dolores while I am there.  Christmas is especially hard for me, especially my first one alone.  I tried to maintain the same traditions that we had observed for so many years – with some adjustments to account for the fact that things were no longer the same.  I put up a Christmas tree and hosted a family gathering for dinner.  We left her usual place at the table empty, to remind the family that she was with us in spirit.  She had collected sets of the US quarters for each of the grandchildren, and I wrapped them as gifts from her.  That first Christmas was tough.  The second one was still difficult.

***

Many resources are available to help anyone who is going through bereavement.  There are numerous organized groups that can provide information about the grieving process and may be able to provide help through the stages of grieving and, possibly, provide some social networking.  It can be comforting to learn that others are going through the same process.  Do some research online, or even in the old-fashioned phone book to see what’s available in your area.  Some of the groups are hosted by senior centers, funeral homes or are specifically for people who have lost loved ones to cancer, or multiple sclerosis or Parkinson’s, etc..  Some groups are led by trained guidance counselors and others are more informal.

Are there hobbies that you have not had time for, books that you have wanted to read, concerts or theater programs that you would like to attend?  These activities can be done alone or provide an opportunity to meet other people.  Stay in touch with friends by phone or e-mail.  Keep a journal.

Activities with family members or close friends are a good place to start.  Join a club   Senior Centers offer a wide variety of activities that may be of interest.  Many colleges – like our local community college – offer free or reduced tuition to seniors.  Let people know that you are receptive and interested in some social activities.  Just being with others will help you focus on things besides your own grief.

You may have had experiences with care giving that that you would like to share with others.  Many organizations have newsletters and are receptive to including short articles describing those experiences.

It helps a great deal, to give yourself something to look forward to, something that you can anticipate with pleasure.  Be creative – do something different.  Volunteer.  Travel.  Ski.  Fish.  Ride a horse.  Hike.  Go somewhere just to have a change of scenery.  That will not stop you from thinking about your lost partner, but it will be different  – and that is desirable.

***

My goal, after losing my wife, was to build a life without her.  I don’t think I will ever be entirely adjusted to her absence.  But I have made progress these past 18 months.  Grief is intensely personal, and people experience it in different ways.  I think that grief is a journey of small steps.  I move ahead.  I have my work cut out for me, but it will keep me busy and engaged for the rest of my life.  It’s up to me – by myself – to work at it, to make something meaningful; of it.

Written by Richard N. Sater

March 10, 2014

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Seeking That Elusive Good Night Sleep

(Family Caregiver Alliance) Americans are more sleep-deprived than people in other countries. According to the National Sleep Foundation, most adults need between seven and nine hours of sleep each night for optimum performance, health and safety. The Foundation advises: “When we don’t get adequate sleep, we accumulate a sleep debt that can be difficult to ‘pay back’ if it becomes too big. The resulting sleep deprivation has been linked to health problems such as obesity and high blood pressure, negative mood and behavior, decreased productivity, and safety issues in the home, on the job, and on the road.”

sleepCaregivers often find themselves exhausted at the end of the day, but many are still not able to sleep. Varying studies have documented that approximately 70% of caregivers for people with dementia report sleep problems, 60% report sleeping less than 7 hours, and 10-20% use alcohol to go to sleep and/or sleep medication. In data collected by the California Caregiver Resource Centers, 41% of caregivers said they are awakened during the night by the care receiver. These same caregivers also scored higher on the depression screening.

Insomnia comes in several forms—trouble falling asleep (more than 30 minutes), trouble falling back asleep after waking at night (e.g. to use the bathroom or care for someone else), waking up early and not being able to fall back asleep, or waking up not feeling refreshed. People with depression and anxiety also have a higher incidence of insomnia.
People with Alzheimer’s disease and other dementias frequently have sleep disturbances. The most common is “sundowning,” so called because the person gets agitated later in the day and often has trouble falling asleep and/or staying asleep once in bed. This leads, of course, to lack of sleep in caregivers, and is one of the most common reasons for a caregiver to place a care receiver in a facility. Lack of sleep also makes people irritable and impatient, which makes caregiving even harder.

It is important to talk with your loved one’s physician about sleep disturbances. This is as important for your loved one as it is for you and your health. You might consider a night time attendant or ask for respite help at night, so you can get sleep. Medications might help also. A rule of thumb is that you need a good night’s sleep every third night to prevent burn-out.

There are a number of ways to help yourself get a good night’s sleep. Getting exercise everyday is good for you in every way, but in particular, it helps with sleep and in reducing depression. Having a regular sleep routine—one that is calming, e.g. taking a bath or reading—and a regular bedtime are also important. Having a room which is dark, quiet and a little cool, and not eating a big meal before going to sleep make a big difference. We all know to cut down on caffeine (and don’t forget many sodas contain caffeine), and also that alcohol may help you fall asleep, but may actually contribute to waking up during the night.

The National Institutes of Health have published a free booklet called “Your Guide to Healthy Sleep” which can be downloaded from their website, www.nih.gov or by writing to National Institutes of Health (NIH), 9000 Rockville Pike, Bethesda, Maryland 20892. Other helpful websites are: National Sleep Foundation, www.sleepfoundation.org, American Academy of Sleep Medicine, www.aasmnet.org, and National Center on Sleep Disorders Research, http://www.nhlbi.nih.gov/about/ncsdr/index.htm.

Getting a good night’s sleep is not only necessary in order for you to take care of yourself, it is also necessary in terms of the quality of care you give your loved one. It should go at the top of your priority list instead of at the bottom where we usually find it!

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Caregiving: A Universal Occupation

(Family Caregiver Alliance) Most people will become caregivers—or need one— at some point in their lives. A caregiver is anyone who provides basic assistance and care for someone who is frail, disabled or ill and needs help. Caregivers perform a wide variety of tasks to assist someone else in his or her daily life, for example, balancing a checkbook, grocery shopping, assisting with doc-tor’s appointments, giving medications, or helping someone to eat, take a bath or dress. Many family members and friends do not consider such assistance and care “caregiving”—they are just doing what comes naturally to them: taking care of someone they love. But that care may be required for months or years, and may take an emotional, physical and financial toll on caregiving families.

MaggieBill_dinnerFor some people, caregiving occurs gradually over time. For others, it can happen overnight. Caregivers may be full- or part-time; live with their loved one, or provide care from a distance. For the most part, friends, neighbors, and most of all, families, provide—without pay—the vast majority of care.

Many American families care for an adult with a cognitive (brain) impairment. Cognitively-impaired people have difficulty with one or more of the basic functions of their brain, such as perception, memory, concentration and reasoning skills. Common causes of cognitive impairment include Alzheimer’s disease and related dementias, stroke, Parkinson’s disease, brain injury, brain tumor or HIV-associated dementia. Although each disorder has its own unique features, family members and caregivers often share common problems, situations and strategies.

Caregiving and Cognitive Impairments

We know that cognitive and memory impairments can change how a person thinks, acts and/or feels. These changes often present special challenges for families and caregivers. An ordinary conversation, for example, can be quite frustrating when your loved one has difficulty remembering from one moment to the next what has been said.

Individuals with moderate to severe dementia or another cognitive impairment often require special care, including supervision (sometimes 24 hours a day), specialized communication techniques and management of difficult behavior. They may need help with activities of daily living (called “ADLs”), such as bathing, eating, transferring from bed to a chair or wheelchair, toileting and/or other personal care.

Challenging Behaviors

Individuals with cognitive impairment may experience a range of behavioral problems that can be frustrating for caregivers. These might include communication difficulties, perseveration (fixation on/repetition of an idea or activity), aggressive or impulsive behaviors, paranoia, lack of motivation, memory problems, incontinence, poor judgment and wandering. Some people may develop behavioral problems early on, while others go their entire illness with only minor issues. Most cognitively-impaired persons fall somewhere in the middle, having good days and bad days (or even good or bad moments). Anticipating that there will be ups and downs, and maintaining patience, compassion and a sense of humor will help you cope more effectively with difficult behavior. It’s important to remember that it’s the disease, not the person, causing the behavior.

Helpful suggestions for managing these problems include communication techniques, such as keeping language simple and asking one question at a time. Break down tasks and questions. For example, instead of asking, “would you like to come in and sit down and have a snack?,” use simple statements such as, “sit down here,” and “here’s a snack for you.”

Wandering and poor judgment may signal the need for 24-hour supervision. Be sure to review the home safety checklist on page 4 and know whom to contact in your community in case of an emergency. If wandering or aggressive behaviors are problems, you may need to contact emergency, police, fire or medical systems.

Ten Steps to Get You Started

Whether you have moved into the role of caregiver gradually or suddenly, you may feel alone, unprepared and overwhelmed by what is expected of you. These feelings, as well as other emotions—fear, sadness, anxiety, guilt, frustration and even anger—are normal, and may come and go throughout your time of providing care. Although it may not seem possible, along with challenges will come the unanticipated gifts of caregiving—forgiveness, compassion, courage—that can weave hardship into hope and healing.

Each caregiving family faces unique circumstances, but some general strategies can help you navigate the path ahead. As a traveler in new terrain, it is wise to educate yourself as best you can about the landscape and develop a plan accordingly, with the flexibility to accommodate changes along the way. Below are ten steps to help you set your course.

Step 1. Lay the foundation. Establishing a baseline of information lays the groundwork for making current and future care decisions. Talk with your loved one, family and friends: What was mom “normally” like? How has she changed? How long has she been forgetting to take her medicine? When did she stop paying her bills? Answers to questions such as these help create a picture of what is going on and for how long. This basic information not only gives you a realistic view of the situation, but also provides an important foundation for professionals who may be called in to make a more formal assessment.

Step 2. Get a medical assessment and diagnosis. It’s very important for your loved one to get a comprehensive medical exam from a qualified health care team that reviews both physical and mental health. Many medical conditions can cause dementia-like symptoms, such as depression and medication interactions. Often these conditions can be reversed if they are caught early enough. Additionally, new drug treatments for diseases such as Alzheimer’s and Parkinson’s diseases may be most effective in the early stages of the disease. A confirmed diagnosis is essential in accurately determining treatment options, identifying risks and planning for the future. Take your loved one to a memory disorder clinic, if one exists in your community, to get an accurate diagnosis.

Step 3. Educate yourself, your loved one and your family. Information is empowering. Talk to doctors, health and social service professionals, and people going through similar experiences. Read books and brochures. Do research at the library and on the Internet. Learn how the disease progresses, the level of care that will be needed, and what resources may be available to help. Keep a notebook and a file folder of information you collect that you can refer back to when needed. Knowledge will increase your confidence and may reduce the anxiety and fear that many of us feel in the face of the unknown.

Step 4. Determine your loved one’s needs. Care assessment tools include a variety of questionnaires and tests designed to determine the level of assistance someone needs and establishes their personal preferences for care (e.g., bathing in the morning rather than the afternoon). Each situation is different. While one person in the beginning stages of Alzheimer’s may need assistance with grocery shopping and bill paying, another in later stages may have problems with dressing, eating and hygiene.

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Caregiver Stress: Tips for Taking Care of Yourself

(Mayo Clinic) Caring for a loved one strains even the most resilient people. If you’re a caregiver, take steps to preserve your own health and well-being.

With an aging population and changes in health care, such as shorter hospital stays, more and more caregiving is being provided by people who aren’t health care professionals. A caregiver is anyone who provides help to another person in need, whether that’s an ill spouse or partner, a disabled child, or an aging relative. Indeed, more than 65 million Americans provide care to a loved one.

Caregiving is rewarding but stressful

If you’re a caregiver, you know that taking care of someone who needs your assistance can be very rewarding. Being there for your loved ones when they need you is a core value for many. But being a caregiver can exact a high toll, and caregiver stress is common.

Caregiver stress is the emotional and physical strain of caregiving. Individuals who experience the most caregiver stress are the most vulnerable to changes in their own health.

Many caregivers fall into the trap of believing that they have to do everything by themselves. Don’t make that mistake. Take advantage of the many resources and tools available to help you provide care for your loved one. Remember, if you don’t take care of yourself you won’t be able to care for anyone else.

Signs of caregiver stress

As a caregiver, you may be so focused on your loved one that you don’t realize that your own health and well-being are suffering. Watch for these signs of caregiver stress:

  • Feeling tired most of the time
  • Feeling overwhelmed and irritable
  • Sleeping too much or too little
  • Gaining or losing a lot of weight
  • Losing interest in activities you used to enjoy

Too much stress, especially over a long time, can harm your health. As a caregiver, you’re more likely to experience symptoms of depression or anxiety. In addition, you may not get enough physical activity or eat a balanced diet, which only increases your risk of medical problems, such as heart disease and diabetes.

Strategies for dealing with caregiver stress

The emotional and physical demands involved with caregiving can strain even the most resilient person. That’s why it’s so important to take advantage of available help and support. These strategies have helped others manage their caregiver stress:

  • Accept help. Be prepared with a list of ways that others can help you, and let the helper choose what he or she would like to do. For instance, one person might be willing to take the person you care for on a walk a couple of times a week. Someone else might offer to pick up groceries or even to cook for you.
  • Focus on what you are able to provide. Don’t give in to guilt. Feeling guilty is normal, but understand that no one is a “perfect” caregiver. You’re doing the best you can at any given time. Your house does not have to be perfect, and no one will care if you eat leftovers three days in a row. And you don’t have to feel guilty about asking for help.
  • Get connected. Organizations such as the Red Cross and the Alzheimer’s Association offer classes on caregiving, and local hospitals may have classes specifically about the disease your loved one is facing.
  • Join a support group. A support group can be a great source for encouragement and advice from others in similar situations. It can also be a good place to make new friends.
  • Seek social support. Make an effort to stay emotionally connected with family and friends. Set aside time each week for socializing, even if it’s just a walk with a friend. Whenever possible, make plans that get you out of the house. Many have identified that maintaining a strong support system is the key to managing the stress associated with caregiving.
  • Set personal health goals. For example, set a goal to find time to be physically active on most days of the week, or set a goal for getting a good night’s sleep. It’s also crucial to eat a healthy diet.
  • See your doctor. Get recommended immunizations and screenings. Make sure to tell your doctor that you’re a caregiver. Don’t hesitate to mention any concerns or symptoms you have.

Respite care

It may be hard to imagine leaving your loved one in someone else’s care, but taking a break is one of the best things you can do for yourself as well as the person you’re caring for. Most communities have some type of respite care available, such as:

  • Adult care centers. Many adult care centers are located in churches or community centers. Some care centers provide care for both older adults and young children, and the two groups may spend time together.
  • Day hospitals. These hospitals provide medical care during the day. In the evening, your loved one returns home.
  • In-home respite. Health care aids come to your home to provide companionship, nursing services or both.
  • Short-term nursing homes. Some assisted living homes, memory care facilities and nursing homes accept people needing care for short stays while caregivers are away.

The caregiver who works outside the home

Two-thirds of caregivers work outside of the home. Juggling work responsibilities and caregiving isn’t easy, and employed caregivers experience high levels of caregiver stress. If you’re in this situation, try these strategies for balancing your work and personal responsibilities:

  • Learn to delegate. Share your work — and home — responsibilities with others. Don’t be afraid to ask for help.
  • Investigate support services. Ask your human resources department about resources your company offers, such as support lines or referral services. Then make use of these assistance programs.
  • Keep information flowing. Keep an open line of communication with your supervisor and co-workers.

You aren’t alone

If you’re like many caregivers, you have a hard time asking for help. Unfortunately, this attitude can lead to feeling isolated, frustrated and even depressed. Rather than struggling on your own, take advantage of local resources for caregivers. To get started, contact your local Area Agency on Aging (AAA) to learn about services in your community. You can find your local AAA online or in the government section of your telephone directory.

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