Saying Goodbye To A Parent Or Loved One

caregiver holding handsHuffington Post is running a great article entitled “Saying Goodbye To A Parent” by Betty Londergan.  Many of us won’t have the privilege of saying goodbye because many times death can be acute, immediate and sadly… surprising.  For the lucky ones, being able to say-your-peace, and receive the same back can be incredibly fulfilling.

My husband was able to experience this with his grandfather many years ago.  His “Grandpa Joe”, a WWII veteran was dying of cancer that had spread extensively throughout his body.  He had been in and out of the VA in Spokane Washington… On and off chemotherapy…  And finally in his late 80′s he had had enough.  Weeks before he went into the VA (his final visit) my husband and his brother drove up to Spokane to spend some time with Grandpa Joe.  It was unlike any other visit they’d ever had.  The normally rough-and-tough Joe was extremely frail but still relatively lucid.  On this visit, Joe would open up about the war (he rarely if ever spoke of his year of grueling service as a medic in the war overseas), and Joe even initiated a discussion about what each grandchild had meant to him during his adult life.  Joe knew this was indeed the last visit he’s have with his grandsons.  Though I’m told the tears were at full flood stage, each of the boys (then in their 30′s) were able to share their favorite memories and thank Joe for being such a wonderful grandfather and friend over the years.  They also both (literally) said goodbye to Grandpa Joe one last time…

Being able to say goodbye, can be an incredible rewarding and fulfilling experience.  In her article, Betty Londergan calls being with a parent while they’re leaving this world “the great privilege”, and I must say I totally agree.  As a social worker, I’m around families dealing with these issues on a regular basis.  Some are good at it, and some not so much.  Most people know that in life there are no guarantees, so it’s important to take the opportunity to tell your loved ones how much they mean to you.  Tell them you love them while you have the opportunity to do so in this life.  It will eliminate (or at least minimize) the “I wish I would have” notions, or the “I should have told them what they meant to me” regrets.

Have you had the “privilege” to say goodbye a loved one before they passed on? How did it go?  What would you do differently?  -Share your thoughts in the comments below

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Dementia Care- From War to Grace

Aging with Grace photo“She’s ALWAYS been stubborn and it’s only gotten worse with age!”  When families care for their aging loved one a tug of war can quickly start over installing grab bars in the shower, keeping feet elevated or accepting the help of caregivers. Assumptions flare up without shedding useful light on the distinction between “will not” and “can not”. The lightning flash of judgment can blind clinicians and other care providers as well.

The elder in question may or may not have a diagnosis of dementia. Even mildly diminished mental function can derail every day tasks and stall cooperation.

Some folks have spent a lifetime resisting change and fending off help. Frustrated family members involved with such a person quickly take up their historic positions and either wage war or throw up their hands in disgust. As understandable as that may be, aging itself erodes the elder’s very foundation. It’s a new game now.  Wise and effective  families consider normal mental aging, physical/medical health and learn about dementia in an effort to find a fresh approach.

Normal mental aging introduces a new set of obstacles for the aging adult. Complex tasks take longer to understand and produce a response, the elder is more easily distracted, and hearing and vision may scramble input. Given all of these changes, errors are common; those errors are alarming to everyone.

Underlying medical disorders and pain can introduce additional corrosive factors that undermine cooperation. Shortness of breath, episodes of dizziness or fatigue as well as the ongoing fear of losing control of their bladder or bowels can be unrecognized distractions that further stall the elder’s ability to accept new equipment, learn a new task or make changes to their routine.

With the onset of dementia the very bedrock of mental function gives way. In some cases there is a slow decline; in others, as with a stroke for example, the damage can be sudden. That battle over grab bars or accepting a caregiver is fueled by much more than simple stubbornness. It requires a fresh approach.

It can be helpful to take an inventory of the physical, medical and emotional challenges the elder has to face each day. What kind of “vehicle” is the elder trying to “drive”?

A person who battles infection, medication side effects, sleep loss and pain has very specific and variable needs. A person who can’t hear, can’t see and can’t feel things accurately will, at the very least, be distracted and will certainly have problems with daily tasks. Poor vision and hearing result in poor memory – regardless of any underlying dementing process – junk in is junk out.

Consider emotional health next. Hopefully elders who have lived with schizophrenia, bi-polar disorders and the like will receive appropriate services. Depression has a serious impact on cognition and may respond well to medication and non-pharmaceutical treatment. Elders who have experienced the loss of their home, a life partner or pet may be aching and distracted with grief.

So the “car” the elder is “driving” may be quite a clunker! The emotional state of the “driver” may at times feel like they are locked in a cell with a blaring radio and screaming kids or at other times imprisoned inside chilling darkness.

What about the mental resources of this imagined “driver”? How well is their cognitive equipment working? Most people associate dementia with memory loss, but impaired cognition involves so much more: perception, attention, judgment, problem solving, use of numbers, language and learning. Dementia damages all of these mental tools.

Even before dementia is diagnosed many elements of cognition may not be working well. The elder may always have had trouble with judgment, impulse control, problem solving and learning. Age, along with years of alcohol/drug abuse and injury, will strain already weak systems.

Perceptual damage often lurks unrecognized. Perception, the meaning the brain makes of sensory input, is an essential foundation to attention and memory. This delicate network of brain function requires specific testing; simple observation does not reliably detect impairments.

When perception is healthy, we can tell the difference between wet and icy and the difference between a motor and a bell. We can reach into our pocket and find our keys, leaving the coins behind. When perception is damaged, the very foundation of every experience falls apart in unpredictable ways.

Is the demented elder faced with “driving” an unpredictable and temperamental “wreck” of a body? Is that task complicated by episodes of fear, grief, voices, energy highs and lows? Do they know what is going on around them? Can they follow verbal instructions? Do they recognize hazards? Can they solve problems or get help? No doubt the answers to these questions will change with dementia’s inevitable decline.

The elder’s previous history and current challenges may dishearten even the most intrepid helper. Don’t be discouraged. Here is an important key: don’t introduce anything new by talking about it. Just bring the new bathroom grab bar or new foot rest or new caregiver and put it in place with the invitation to “try it for a week and then we can take it out if you don’t like it”. Plant the seed and nurture its growth.

A special grace comes with using something or someone that meets a need – you just have to get it planted so it can take root and flourish.

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The 10 Early Signs Of Alzheimer’s Disease

A special report published recently by the Alzheimer’s Association, noted; “An Alzheimer's disease facts and figuresestimated 5.4 million Americans of all ages have Alzheimer’s disease in 2012.  This figure includes 5.2 million people age 65 and older and 200,000 individuals age 65 who have younger-onset Alzheimer’s.”  According to CNN this number is expected to rise to 16 million by 2050!

The Alzheimer’s Association (alz.org) has published a list of warning signs and symptoms of someone suspected of Alzheimer’s Disease.  This is an important list, and we’d encourage you to pass it along to others that may need this valuable resource.  Knowing the signs and symptoms of Alzheimer’s Disease, can help keep you (or your loved one) out of trouble should these signs start to occur more regularly.

“The 10 Early Signs Of Alzheimer’s Disease”

  1. Memory Loss That Disrupts Daily Life (like forgetting names and appointments and remembering them later)
  2. Challenges In Planning Or Solving Problems (like making errors when paying bills or balancing a checkbook)
  3. Difficulty Completing Familiar Tasks At Home, At Work Or At Leisure (like occasionally needing help with the settings on an oven or DVD player)
  4. Confusion With Time Or Place (like getting confused about the day of the week, and remembering later)
  5. Trouble Understanding Visual Images & Spatial Relationships (like difficulty reading or differentiating colors)
  6. New Problems With Words In Speaking Or Writing (like having trouble finding the right word to use in conversation)
  7. Misplacing Things & Losing The Ability To Retrace Steps (like misplacing something and retracing steps to find it)
  8. Decreased Or Poor Judgment (like giving money to telemarketers)
  9. Withdrawal From Work Or Social Activities (like not attending events with friends)
  10. Changes In Mood & Personality (like becoming easily irritable)

“Studies presented at the (2011 International Conference on Alzheimer’s Disease) conference reinforced the notion that signs of Alzheimer’s may develop in the brain 10 to 20 years before any symptoms begin.” -CNN Health

The Senior List Check MarkIf you or anyone you know is experiencing any number of these signs you should consult with medical personnel immediately.  For further information and a thorough explanation of each of the symptoms above, visit alz.org.

Also Read:

A Letter From a Mother To Her Daughter (very touching)

Find a Caregiver Support Group

Your Mom Has Dementia… How Do You Keep Her Safe?

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A Letter From A Mother To Her Daughter

Sometimes you see something on social media that really moves you.  This is one of those pieces… You can find it here and there (on the internet) and on facebook, but if you haven’t read it yet- it’s more than worth it.  These moving words are reportedly penned by Guillermo Peña, and translated to English by Sergio Cadena.  The photo is also reportedly taken by Mr. Peña.  Enjoy!
Mother & Daughter by Guillermo Peña

A Letter From A Mother To Her Daughter (by Guillermo Peña)

“My dear girl, the day you see I’m getting old, I ask you to please be patient, but most of all, try to understand what I’m going through. If when we talk, I repeat the same thing a thousand times, don’t interrupt to say: “You said the same thing a minute ago”… Just listen, please. Try to remember the times when you were little and I would read the same story night after night until you would fall asleep.

When I don’t want to take a bath, don’t be mad and don’t embarrass me.
Remember when I had to run after you making excuses and trying to get you to take a shower when you were just a girl?

When you see how ignorant I am when it comes to new technology, give me the time to learn and don’t look at me that way… remember, honey, I patiently taught you how to do many things like eating appropriately, getting dressed, combing your hair and dealing with life’s issues every day… the day you see I’m getting old, I ask you to please be patient, but most of all, try to understand what I’m going through.

If I occasionally lose track of what we’re talking about, give me the time to remember, and if I can’t, don’t be nervous, impatient or arrogant. Just know in your heart that the most important thing for me is to be with you.

And when my old, tired legs don’t let me move as quickly as before, give me your hand the same way that I offered mine to you when you first walked. When those days come, don’t feel sad… just be with me, and understand me while I get to the end of my life with love. I’ll cherish and thank you for the gift of time and joy we shared. With a big smile and the huge love I’ve always had for you, I just want to say, I love you… my darling daughter. “

Original Text in Spanish and Photo by Guillermo Peña. Translation to English by Sergio Cadena
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Finding a Caregiver Support Group

Community Support photoCaregiver Support Groups

It’s November, and IF you didn’t know, it’s National Family Caregiver’s Month.  It’s a time when we’re supposed to be celebrating and honoring caregivers.  Sometimes that means that caregivers need to celebrate and honor themselves.  One way that you (caregivers) can do that is to find a support group and attend it regularly.  It’s one of the ways you can actively deal with the sense of isolation and frustration, by finding a safe place where you can share your feelings.  At the same time, you have the opportunity to give and receive advice and support from other caregivers.

Patient support groups have been around for more than twenty years because of initial research that indicated patient outcomes were more positive among cancer patients who were part of a support group.  Those early  results have been discounted by recent research, however, newer studies indicate that patients of all types who attend support groups experience lower levels of distress.  Bottom line: they feel less stressed… and that more relaxed state enables them to simply feel better.  Feeling good can also translate into faster recovery from treatment.

Who Needs Caregiver Support?

So why do caregivers need support groups?  At it’s most basic… it’s important for stress reduction.  Stress reduction is directly related to caregiver well-being.  A high level of well-being enables caregivers to remain strong to care for their loved ones.

Finding a caregiver support group isn’t always easy (though patient support groups are plentiful).  There are support groups for families, which are helpful to caregivers, but these will also include non-caregivers.  The focus in these groups tends to be on the patient and how the patients’ response to their illness and treatment affects the family members.  Good stuff, for sure, but not necessarily focused on the caregiver.

If you’re in an urban or suburban location, the local hospital or the organization which supports your loved one’s disease (American Heart Association, the Cancer Society, Alzheimer’s Association, etc.), is a good place to find a support group.

Blessings, Joanne

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Caregiving During The Holidays

Holiday Surprise PhotoThe year-end holidays are coming, and I want you to think for a moment about your plans to celebrate.  Rather than do your traditional celebrations, please consider alternative plans and reducing the burden to both honor and support your loved one.  People who are dealing with chronic ailments or who are in pain shouldn’t be expected to go through the holidays as they once did.  No matter how much you (or they) may want “the usual traditions”, you need to take into account reduced stamina and increase frailty.

Tips For Caregiving During The Holidays

Be sure you include your loved one in the planning process, this is very important.  They may want to do everything as it’s always been done… So you’ll need to help your loved one understand that there needs to be new traditions started (in order to account for the place you all find yourselves in now).  That’s not to say you can’t or shouldn’t celebrate!  It’s just a way of remembering that whatever you do, you need to take your loved one’s state-of-health into account.

Here are a few examples of how to reduce stress on your loved one:

  • Instead of a day-long cookie-baking extravaganza that will only exhaust mom, why not pre-bake the cookies?  That way mom can join in the shortened party to decorate them.  She’s still participating, but at a level she can handle.
  • Instead of the big traditional holiday dinner, why not down-size to a series of short events with much lighter menus.  A tea-and-cookies event, wine and appetizers, or even a bring your favorite soup party?
  • Folks who are frail and those suffering from dementia can be overwhelmed by even a handful of familiar faces.  It quickly becomes too much information to recall, too much energy to absorb, and your loved one may respond not with enjoyment, but with highly anxious behaviors.  It’s a good reason to keep your gatherings very small, maybe only two or three people at a time.
  • For the elderly, the process of selecting, buying and wrapping gifts may be too taxing.  Instead of doing a gift exchange, what not use the time to pull out the family photo albums, videos or 8 mm movies?  Other alternatives to spending time exchanging gifts would be to play board or card games that your loved one enjoys, or watch holiday-themed videos.  Our family holds a comic movie film fest.  Laughing together really makes for a great holiday mood.

You get the idea—think small and intimate.  You can still do all the holiday decorating, just have mom supervise from her favorite chair.  You can share and enjoy the music and food of the season.  Just keep your loved one’s state of health in mind and then make appropriate plans.

Blessings, Joanne

Photo: freedigitalphotos.net

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Mom Has Dementia; How Do I Keep Her Safe?

Dementia Safety Precautions

“Mary” posted a question to an on-line caregiver-group that I want to share with all of you:

“How do I keep my parent, who’s suffering from dementia, safe while I’m at work?” – Mary

Here are some suggestions from the Alzheimer’s Association brochure, “Staying Safe”:

  • Be sure to have working fire extinguishers, smoke alarms and carbon monoxide detectors in the house.  Test them regularly.
  • If you are out of the home during the day, use appliances with an auto shut-off feature, such as coffee pots.
  • Install a hidden gas valve or circuit breaker on the stove so your loved one can’t turn it on.  You can also consider removing the knobs when you leave the house.
  • Store grills, lawn mowers, power tools, knives, firearms and cleaning products in a secure (that means locked) place.
  • Discard toxic plants and decorative fruit that may be mistaken for real food.
  • Store medications, vitamins, and other dietary supplements in a locked cupboard.  Remove sugar substitutes and seasonings from kitchen tables and counters.
  • Supervise the use of tobacco and alcohol.  Both may interact dangerously with your patient’s medications.

thumbs upDementia & Wandering

More than 60 percent of dementia patients will wander.  The danger is that they can become lost and die before they’re found.  The Alzheimer’s Association recommends the use of their MedicAlert-Alzheimer’s Association Safe Return program.  There are other, similar programs available, which you can find on-line.

Even if your dementia patient is equipped with one of these tracking devices, prevention is still the best plan:

  • Short term memory loss can cause anxiety and confusion in a place that’s large or contains lots of people, such as the market, a theater, a restaurant, a shopping mall or sports venue.  That confusion can cause patients to wander off in search of something that will quiet their sense of panic.  The best strategy is to keep away from places that will induce this behavior.
  • Be on alert for wandering if your loved one wants to “go to work” or “go home,” if he or she is restless or has a hard time locating familiar place in the home such as the bedroom or bathroom.
  • Other ways to prevent wandering include placing deadbolt locks on exterior doors either high or low, and controlling access to the car keys.

One of the best things you can do when your patients are showing signs of anxiety which may lead to wandering is to give them plenty of assurance that you will not leave them alone.  Try distracting them by giving them repetitive tasks, like folding laundry or helping prepare dinner.

Keeping your dementia patient safe is really a matter of being aware of their reactions and anticipating problems before they actually occur.

Blessings, Joanne

*photo - freedigitalphotos.net

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National Family Caregivers Month Is Here

National Family Caregiver's MonthNovember is National Family Caregivers Month

Here’s what I’d like to see:

  • A big parade featuring caregivers on 5thAvenue in New York;
  • A huge rally in support of pro-caregiver legislation on the National Mall in Washington DC;
  • Restaurants across the country offering discounts to family caregivers;
  • Members of the NFL, NBA, MLB, and NHL wearing colored equipment that draws attention to caregivers  (What color would that be?).

While none of this is likely to happen, I do think that having a month to draw attention to family caregivers is a good thing.  It brings the facts about caregiving closer to the forefront of issues to be considered in 21st century America.  There have been gains made in the past decade in terms of government support for family caregivers through creation of national programs such as the Area Agencies on Aging and the Offices of Senior Resources and Councils on Aging.

Still, there’s a lot more that can and should be done to support family caregivers, but in the wake of the vitriolic debate over healthcare reform, I doubt that policy makers from either party are much interested in wading into similar waters to craft a spending plan to support caregivers.  So that leaves us doing what we do without “official” support other than in the form of having a whole month that honors and celebrates our unpaid work on behalf of family and friends.

A good way to use this month is to consider the way in which you go about your caregiving and find new ways to make it less stressful:

  • Learn to ask for and accept help;
  • Find ways to care for yourself in order to stay strong to care for your loved one;
  • Shift your thinking into new patterns of doing family celebrations that make room for the reality of your caregiving.
  • Pat yourself on the back—or take yourself out to lunch, a movie, some kind of treat—as a way of saying ‘thanks.’ You deserve it.

Blessings, Joanne

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Dementia Patients And Wandering

caregiver holding handsAccording to the Alzheimer’s Association, six of every 10 dementia patients will wander.  When they do, their lives are at risk.   And yet, how many of you caregivers of (elderly) dementia patients are prepared to deal with the reality of this dangerous potential?

Too often, I hear a statement like “Well dad hasn’t tried to wander off yet, so we don’t need to worry about that right now.”  The problem is that there’s no way to know when dad will wander off.  It makes sense to be proactive to prevent wandering rather than wait for disaster to strike.

A recent story in the Los Angeles Times reported a 92-year-old dementia patient whose family was in denial about the possibility of him wandering.  When he did, he was lost for nearly 24 hours.  The story had a happy ending when he was found, tired, hungry and dehydrated, but safe.  Sadly, not all of the stories end that way.

In this case, the family was convinced that even though their loved one was suffering from dementia, he wouldn’t wander.  They all went to dinner in a large restaurant and let him go to the restroom alone.  He didn’t come back. “He kind of has dementia,” said one of his relatives.  “He might not have remembered that he was with us or where he was.”

Oh brother.  Without dealing with the denial of reality (in those statements), let’s just focus on the fact that as a person with dementia, he has significant short-term memory loss.  He can be easily confused in surroundings where there are large groups of unfamiliar people.  Obviously he could’nt remember he was with family in the large and unfamiliar restaurant.  And likewise, he didn’t know where he was… so he went in search of “home.”

“He kind of has dementia” – (Family member of wandering dementia patient)

Don’t wait until something like this happens to your loved one.  Take action now.

The Alzheimer’s Association (1-800-272-3900) has some terrific information to help you make sure your loved one will stay safe.  In addition, there are now tracking devices, smartphones, dumb phones, and apps for seniors that can be tracked from your smart phone, tablet or computer.  Type “tracking devices for dementia patients” into your search engine and you’ll be amazed at the number of products that are available.

Blessings, Joanne

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Family Meetings With Caregivers

family's and caregivingChristine M. Valentin is a Licensed Clinical Social Worker (LCSW) who specializes in working with caregivers.  She has an excellent website at www.familycaregiversocialworker.com.  One of her recent posts concerned how caregivers can manage successful family meetings.  Here are her top four tips for doing that.  Keep in mind, a successful family meeting won’t always end with unanimity, but it can allow every family member the opportunity to be respectfully heard.  Sometimes that’s more important than everyone being in complete agreement about what to do for mom or dad.  Here are her tips:

Caregiver Tips for Family Meetings:

  1. Everyone who attends the meeting should, at the very least, want to attend and respect the viewpoints of other family members/attendees. This is not to say they have to agree with everything that is said, but if they are solely attending the meeting to get others to side with their viewpoint, then it won’t work.
  2. The purpose for the meeting should be made very clear when inviting people to attend and should also be reviewed at the start of the meeting. Family members/attendees should not show up believing certain topics will be addressed because it could lead to a feeling of mistrust, skepticism and in some cases, complete disregard for what is being said.
  3. Don’t be afraid to bring in a mediator.  Whether this individual is a professional or the most level-headed person in the family, having someone who can make sure the discussion doesn’t get too personal can be of great assistance. During family meetings, it is not uncommon for past conflicts or accusations to get in the way of the objective for the meeting. Having a mediator can help refocus the group.
  4. Assuming that this meeting will solve everything, will only set you up for disappointment. Any family meeting, especially the first few, will most likely be filled with a lot of clarification, explanation and emotion. Set your goals low but aim high. Once you get a feel for how the meeting is flowing, then you can get a sense for how many topics can be addressed.

Ms. Valentin closes her list with an important thought, which is that while there are no guarantees that a family meeting will resolve your caregiving issues/conflicts, there is a great chance that people who attend a structured, goal-oriented meeting will come out experiencing a greater understanding of another person’s viewpoint and a sense of relief.  If a plan of action is devised and agreed upon by all, then the meeting was definitely a success!

Blessings, Joanne

Image: FreeDigitalPhotos.net

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