Sometimes Kids Just Have to Take the Bull by the Horns

There is a Point Where the Person With Memory Loss Can No Longer Make Decisions for Him or Herself

In the past week, I have made two home visits to prospective clients of Seniors’ Choice at Home, a non-medical home care service with the goals of:  1) helping seniors stay where they are longer with some practical help; and 2) providing some backup for adult children or other helpers as they try to balance the busyness of their own lives with the help their elderly parents/neighbors/friends need.  In both cases, the elder refused the help because they viewed themselves as OK.  In both cases, the nurse will probably need to involve Adult Protection because of the vulnerable state of the elders and because there is a mandatory reporting law in our state.

It is so common for us as adult children to find ourselves in denial about the reality of a parent’s condition.  No matter how mature and responsible we are, there is still that mystique around our parents being our parents.   It’s even more difficult for adult children who live across the country from  parents.  Sometimes when returning for a visit after a few months, the changes are obvious, but then it’s tempting to chalk it up to “a bad day.”   We want so badly to allow our parents their independence, to respect their right to make decisions about how they live their lives.

David Solie, M.S., P.A., in his book How to Say it to Seniors talks about what he believes is most important to older adults–the ability to be in control of one’s own life.  I agree with him up to a point.  When the decision or change the elder needs to make isn’t a matter of life or death, or when the person is of “sound mind,” it’s wonderful to be able to allow the elder to make the decision.  “Mom, I know this is difficult for you, but you are in charge of your life, you are in control, you can decide what you want to do.”   However, if your mom is lying on the ground struggling for breath, you don’t ask her if she wants you to call an ambulance.

With Alzheimer’s disease and other dementias, parts of the brain are destroyed and no longer function in the way the did in the past.  At autopsy, a diseased brain has lost as much as one third of its normal weight.  There are actually large spaces in the brain where cells have died.  The brain has had a “heart attack” and the person is gasping to think.

When an elder has significant cognitive impairment, when the doctor, the visiting nurse, and/or the neighbors  have serious concerns  about a parent’s safety, it’s time for the adult children to step in and make the recommended changes.   It’s probably one of the most difficult things for an adult child to do.

It’s That Time of Year Again

Summer Means High Temperatures and High Humidity–even in Minnesota

We know it’s hot when it’s in the 90’s, but when the dew point is higher than 57, the effect of the temperature is greater than the numbers.  For instance, on June 23 in the Twin Cities, we were told to expect temperatures of 96 0r 97 degrees.  With the dew point around 70, it felt like around 108 degrees–a very dangerous temperature that resulted in heat warnings for Hennepin and Ramsey counties (Minneapolis and St. Paul and suburbs.)

As we age, we are less able to respond to heat and cold.  During hot and humid weather, a buildup in body heat can cause heat stroke or heat exhaustion.  This is especially true for people with heart and circulatory disease, stroke or diabetes.

Heat Stroke is a medical emergency requiring immediate attention and treatment by a doctor.  Among the symptoms are:  faintness, dizziness, headache, nausea, loss of consciousness, body temperature of 104 degrees F. or higher, rapid pulse, and flushed skin.

Heat Exhaustion takes longer to develop than other heat-related illnesses.  It results from a loss of body water and salt.  Symptoms include:  weakness, heavy sweating, nausea, and giddiness.  Heat exhaustion is treated by resting in bed away from the heat and drinking cool liquids.

Protective Measures include remaining indoors in an air-conditioned room.  If the home is not air-conditioned, you might take your loved one to a cool public place (library, movie theater or store) during the hottest hours.

Other ways to cool off include taking cool baths or showers, placing ice bags or wet towels on the body and using electric fans (being careful to avoid an electrical shock.)

Remember that persons with memory loss and the other cognitive impairments that go along with dementias like Alzheimer’s disease often lack good judgement.  You may need to make sure that those you care for wear appropriate hat, sunglasses and sun screen.

Quality of Life for Individuals With Dementia

“Quality of Life” (QOL)–an Important Goal for All Who Care For Those With Memory Loss

When a person is suffering from any form of memory loss, it is very difficult to achieve the goal of care that offers quality of life, mainly because the the diminishing cognitive capabilities of the dementia patient.  QOL is also difficult to measure because part of the disease process involves difficulty with communication.  So how can we determine if a client with dementia has QOL?

There are a few QO: models for dementia patients.  Below there are examples of two of the models:

1.  M.P. Lawton’s (Alzheimer Disease Association Disorders, 1994) definition of QOL: encompasses four (4) domains:

A.  Psychological well being

B.   Behavioral competence

C.   The objective environment

D.   Perceived QOL

2.   L. Volicer (Clin. In Geriatric Medicine) developed another model for patients with severe dementia:

A.   Provision of meaningful activities

B.  Treatment of medical conditions

C.  Management of behavioral symptoms.

Even with these models there are no set guidelines for ensuring QOL for those with dementia.  However, Sandy Burgener (1998) has developed QOL guidelines and interventions that are very helpful in caring for those individuals with dementia.  They focus on patient experience and are as follows:

I.   Pain and Comfort Status

Intervention: A.)  Observe nonverbal pain expressions;  B.) Inform those caring for patient about his/her expression of pain; C.)  Integrate pain assessment into care giving routine.

II.  Individual Touch Experiences

Intervention:  A.)  Observe verbal and nonverbal responses to touch;  B.)  Employ touch based on patient’s response.

III.  Structural Care Routine:

Intervention: A.)  Follow familiar pattern of care; B.)  Build pattern of care around “routinized” behaviors.

IV.  Low-Stimulus Environment

Intervention: A.)  Reduce extraneous noise;  B.)  Reduce crowding or unfamiliar persons or objects;  C.)  Avoid misleading or distracting stimuli.

V.   Health

Intervention: A.)  provide palliative (comfort care and pain relief as apposed to restorative treatments) care interventions.

VI.  Time Use and Social Behavior

Interventions: A.)  Help family and friends who visit understand the nature of the disease and the person’s need for contact;  B.)  Encourage visiting by close family members and friends.

From a hospice perspective, it is important to note the reference made to addressing the pain and comfort status of the dementia patient.  It is also important to note that two of the dementia experts cited, Volicer and Burgener, address the need to take care of the patient’s medical needs to maintain QOL while avoiding unnecessary aggressive or restorative treatments.

Thank you to Linda Debner of Hospice of the Twin Cities in Plymouth, Minnesota for permission to use information from her newsletter of March, 2009.  The website for Hospice of the Twin Cities is:

http://www.hospiceofthetwincities.com

References:

Burgener SC:  Quality of Life in Late-Stage Dementia in Hospice Care for Patients with Advanced Progressive Dementia.  Edited by Volicer, L, Hurley A.   New York:  Springer, 1998, pp 88-113.

Lawton MP:  Quality of life in Alzheimer’s Disease.  Alzheimer Dis Assoc Disorders. 1194;8 Suppl 3:138-50.

Volicer, L:  Management of severe Alzheimer’s disease and end-of-life issues.  Clin in Geriatric Medicine. 2001; 17 (2): 377-391.

The Importance of Taking Medications as Directed

Medication Reminders Are a Valuable Part of Care Giver Service

Taking medications as prescribed and directed by one’s physician can improve one’s well-being and ability to live independently.  Because short-term memory loss is one of the initial symptoms of Alzheimer’s disease, verbal reminders by care givers are critically important.  By taking medications at directed, you:

• Lower the chances of hospitalization.  For seniors, almost 3 of 10 hospital admissions result from incorrect use of medications.
• Avoid deterioration of health.  Many seniors (estimates range from 10-25%) either take only part of their prescription medications or forget to take them all.  Poor adherence can have serious consequences including increased discomfort, inadequate disease prevention and even death.
• Reduce the risk of falls.  Thousands of seniors suffer hip fractures each year from falls caused by medication-related issues.
• Extend the time seniors can live independently.  25% of people who enter nursing homes do so because they are not able to manage their medications when living on their own.

Your pharmacist is an excellent resource when you have questions about medications.

Comfort as a Goal

Comfort, Respect, Maintaining Independence: Goals for Seniors’ Choice at Home Caregivers in Minnesota

When I orient new employees coming to work for Seniors’ Choice at Home, I spend considerable time talking about our goals.  Basically, we have two:  1) to assist clients with practical tasks, so that they can remain in their home; and 2) to provide some relief to the adult children of our client by helping their parents.

I spend even more time talking about how we want our care givers to interact with their clients.  Seniors’ Choice at Home, from it’s very beginnings more than 13 years ago, has based our service on the importance of the relationship between the care giver and client.  We only hire care givers whom we believe have the ability to establish a positive relationship with seniors.  I think some of the things we encourage our employees to do would be helpful for family care givers as well.

We don’t want our workers to just make lunch for the client and then go in the living room and watch TV.  We want them to sit with them, eat lunch with them, visit with them, so that meal time is a pleasant experience.  If clients are able and want to help with household task, we strongly encourage care givers to engage the client and encourage him or her to do as much as possible for that individual.

We want our care givers to take direction from the client where possible, so that tasks are completed the way the client wants them done.  When a client asks a care giver to do something, I tell the new employee that the best answer he or she can give is:   “I’d love to!”  It’s so hard for folks of the generation of our clients to ask for help.  An enthusiastic reply makes it easier to ask the next time.

In the book, How to Say it to Seniors, the author, David Solie, says he believes there are two things that are very important to remember.  One is that many older people want to leave some kind of legacy.  More interesting to me was Solie’s belief that Seniors really want to keep from losing control.  He suggests that whenever possible, mainly by the words you use, you give seniors the message that they are in charge.  “Mom, you can decide about this; you are in control.”  “Dad, this is your decision; what would you like to do?”  Very few decisions are life and death matters; most of the time, even in very serious matters, the person can at least be given a little time to think about what he or she wants.

We also spend a good deal of time talking about special ways of working with persons with memory loss.  I tell people don’t argue. After a certain point in the disease process, orienting to reality isn’t always helpful, go with the flow, if the person tells you the sky looks green today, don’t try to talk him or her out of it, just go along, “Wow!  I’ve never seen the sky that color before!”  Do everything possible to decrease the frustration level.  If someone asks for the salt for his cereal, don’t correct him, just pass the sugar.  Here I think the very best goal is to provide comfort.  Do whatever it takes to help the person remain as comfortable–in every way–as possible.  Therapeutic fibbing is acceptable.

One wife, caring for her husband with Alzheimer’s was greatly relieved when a friend helped her understand that it was no longer in her husband’s best interest for her to consult him about business matters.  Even though he had always been the expert, the damage to his brain made it very difficult for him to think through certain financial or legal matters.  While she was trying to be respectful to him, he became uncomfortable and agitated when she tried to include him in these decision.

Some years ago, I taught private piano lessons.  After both my daughters began violin lessons with a Suzuki teacher, I started thinking about how I might change my teaching methods to incorporate some of the Suzuki method.  I attended a weeklong seminar at the U. of Wisconsin where I was able to participate in classes about the method and observe master teachers working with their students.  Probably the most valuable idea I came away with was that children should feel better about themselves when they leave a lesson than when they came.  I’ve thought about how beautifully that idea can be implemented in the work place, and even in our home.  If our customers, our patients, our clients, our students, our employees, our family members are helped to feel better about themselves after we interact with them than they did before, we will have been successful.

Think about it.  If you are caring for someone, see how you can help him/her  feel comfortable about whatever is going on at that particular moment, and how you can help him or her feel better about themselves after you’ve spent time with them than they did before.

Minnesota Care Givers Ask What To Do With A Person With Alzheimer’s

Creative Collages–A Bit of This and a Bit of That

Many who care for loved ones with memory loss have a difficult time filling the hours of the day. As cognitive ability decreases, there seem to be fewer and fewer possibilities. Here’s one activity that not only fills the time, but helps fulfill both care recipient and care giver, and additionally, serves a few other purposes.

Making a collage is an enjoyable way to spend an afternoon. All you need is a large sheet of colored construction paper, some old magazines, glue, scissors and a felt tip pen. The idea is to make a collage with your client using pictures that are meaningful to him or her. The goal of the process is to facilitate self-expression, communication and social interaction.

To begin, just look at old magazines together. The care giver cuts out pictures that seem appealing to the care receiver. He/she tells (or points to) where he or she wants the picture pasted on the sheet. If the person is verbal and able to give you a title or caption for the picture, you write it under the picture. If not, suggest one and watch for a “yes” or “no” response (it could be a nod or a smile. Instead of writing with a felt tip pen, you could also cut out the words you need from the magazines to make captions. (They look rather like a ransom note!)

This pleasurable activity has been successfully used in skilled facilities even with patients who were barely able to communicate, who wandered, avoided eye contact, and who did not appear to recognize family members. In one instance, a wife (Mary) found that when she sat down with her husband James and began to page through a magazine in search of items to use in the collage; her husband surprisingly seemed interested. Mary would point out pictures and talk about them, and though James would often turn away, he remained seated and actually listened. Eventually he bagan touching pictures he seemed attracted to. His selections seemed to reflect elements the couple shared in their life together, and Mary would talk to him about the memories they triggered. James would sometimes remain engaged for more than an hour.

One day, Mary began to sob as she showed staff their collage. It depicted a car, a tractor, basketball players and the words, “I’m OK, I’m Alive” that seemed to leap off the top of the page. Mary tearfully explained that James kept touching these words even though she had been reluctant to cut them out for him. It was the message that helped her realize that she hadn’t lost him completely.

Besides encouraging communication and social interaction, the collage process also increases self-esteem and enables the individual with dementia to express thoughts and feelings. This often improves speech and cognitive ability, which can help reduce depression and difficult behavior.

The process is beneficial to the professional caregiver because it helps pinpoint an individual’s interests, making it easier to create discussion by finding common experiences. We are social beings and our emotional and often physical well-being depends upon our ability to interact and communicate with others. Collage communication is a simple tool that enables access to both.

–From an article in Care Advantage by Katya Luisa, Cost Rica and Los Alamos, NM., who developed the program. An exerpt from this article was included in one of the monthly newsletters sent to all Seniors’ Choice employees. For information about Senior Care in the Twin Cities of Minnesota, call 763-546-1599, or check out our website at http://www.seniorschoicemn.com

Dementia Care: Making a Difference in Minnesota

What Seniors’ Choice Care Givers Are Doing in the Twin Cities You Can Do Wherever You are

The Seniors’ Choice at Home employees who provide senior care for our clients are especially skilled in working with those who have dementias like Alzheimer’s disease.  Some of the simple suggestions they know about and use with their clients can be easily adapted to the care families provide their loved ones.  Below you’ll find a few simple suggestions.

Language Problems

*   Never stop trying to communicate with the person with memory loss.  Even when they have increasing difficulty talking to you, you can still speak simply to them or try singing simply song.

*   Never underestimate what people with dementia understand.  Always talk to them in a respectful way.

*   Don’t say anything in their presence that you wouldn’t want them to hear and understand.

Lack of Concentration

*   Gently get the person’s attention before speaking to him or her.

*   Remove distractions–ask permission and turn off the TV, for example.

*   Recognize the importance of one-to-tone interactions. 

Loss of Visuo-spatial Skills

*    Use landmarks for way-finding (for example, a picture on the wall by the bathroom.)

*   Be aware of the person’s fears and discomfort.

*   Pay attention to the safety of the environment–remove clutter, add lighting, try to avoid redecoration and remodeling while caring for a person with Alzheimer’s disease.  Remember that familiarity and routines are very important as one’s cognitive abilities decrease.

Minnesota Care Givers Know How to Make a Difference

Monthly Newsletter Helps Seniors’ Choice Employees With Senior Care

Every month I write a newsletter for Seniors’ Choice at Home employees.  I tried to include some fun things like recipes and jokes, some recognition for successes with clients and some pointers for working with clients who have memory loss.  The Alzheimer’s Association (www.alz.org) is always a great resource for me.

Memory Loss

*   Accept the memory loss; don’t think that if the person tried harder, she or he would remember.

*  Answer questions each time as if it was the first time they were asked.  If you run out of patience answering questions over and over, write the answer on a recipe card (a black, felt tip  pen works well for this, ) hand the card to the person, and direct him or her back to it when s/he repeats the same question.

Planning, Organizing and Carrying out Complex Tasks

*  Know that what may seem simple to you (brushing teeth) becomes complex to the person as dementia progresses.  Break directions down into simple steps and offer only one step at a time.

*  Use simple and direct language–the more advanced the disease, the fewer words.  If you want someone to stay seated, say, “Please sit,” rather than “Don’t get up.”  With limited memory, the person may forget the “don’t” and actually get up, because that’s the last thing he/she heard.

*  Be sensitive to emotions–frustration, fear of falling–and offer support and encouragement.

*  Because judgement is sometimes a problem, keep the person’s safety in mind.

Disorientation

*  Use reality orientation carefully.  It may be helpful for some people, especially in the earlier stages, but in some cases, it can be confusing and even hurtful.  Commonly, patients ask for “mother” even though she has been dead for years.  Rather than say, “Oh, your mother has been dead for 20 years,” you might say something like, “Do you miss your mother?”  I bet she was a wonderful person.  Was she a good cook?”

*  Pick your battles.  If she says the sky is green, don’t bother arguing about it; just say, “Wow!  that sure is an interesting color?”  If they ask for the salt for their cereal, and you know they mean sugar, don’t bother correcting them; just pass the sugar.

Go with the flow; meet the person in the reality where he or she is living.   Don’t argue; you will just upset both you and the care recipient.  Remember that “therapeutic fibbing” is OK, and that this disease is different for every person.  It helps to acquire a “bag of tricks”, so that that you can pull one out and try it when needed.  It may not work, so be ready to try another.  It may not work today, but it may be just the thing at another time. 

Seniors’ Choice at Home care givers amaze me every week with their patience and creativity when they work with clients with memory loss.  One care giver made a daily schedule on white paper with a felt tip pen for a gentleman who was continually agitated.  She had the schedule laminated (a plastic cover would work well too,) so he could carry it with him throughout the day.  It seemed to provide him with the sense of security and calmness he needed to know what was happyening next, so he could go through the day with less anxiety.

For more information about Seniors’ Choice at Home in the seven counties in and round dthe Twin Cities of Minnesota, call 763-546-1599, or check out our website at www.seniorschoicemn.com.

The Music and Rhyme of Poetry

Help The Person You Care for Thrive

Many care givers, family and professional, say they wish they knew of ways to better spend their time with people who have memory loss.  We would all like to have those we love thrive, not just survive.  In an earlier post, I wrote about the magic of music.  Poems, like music, seem to be a source of great enjoyment for people of all ages.  Sometimes you can simply start the line of an old familiar poem, “I think that I shall never see…” and the listener will say the next line, “A poem as lovely as a tree.”  (Trees, by Joyce Kilmer.)  Poetry, like music, may be stored in the long-term memory of a person with dementia and can be easily recalled.

In the early stages of Alzheimer’s disease, poems can help people express their own emotions.  They can help initiate conversations and reminiscing.  Later in the disease process, just the sound and rhythms can be soothing and can help a person connect with the long term memories that often remain in tact. 

There is something about the rhythms of both poetry and music that help organize the brain;  both can somehow move people into accomplishing activities of daily living (singing a song or reciting a rhythmic verse sometimes helps with reluctant bathers.)  Poetry can lift one’s spirits and feed a sense of humor.  Even though people with dementias experience significant losses, many times, a sense of humor is something the person retains.  Make use of it and provide opportunities for laughing.

Here’s a poem that might be fun after dinner on Thanksgiving Day:

I ate too much Turkey, I ate too much corn,

I ate too much pudding and pie.

I’m stuffed up with muffins and too much stuffin’

I’m progably going to die.

I piled up my plate and I ate and I ate,

But I wish I had known when to stop.

I’m so crammed with yams, sauces, gravies, and jams

That my buttons are starting to pop!

I’m full of tomatoes and mashed up potatoes

My stomach is swollen and sore,

But there’s still some dessert, so I guess it won’t hurt if

I eat just a little bit more!

–Author Unknown

 

 

It’s Not too Early to Plan for the Holidays

Give Special Consideration to Family Members with Memory Loss

It’s the middle of October and the Holidays are sneaking up on us.  For some people with memory loss and their care givers, the holidays are a challenge.  My short and sweet advice is the more advanced the memory loss, the simpler things need to be. 

If you are going to take Mom or Dad to your home for a celebration day, tone down the excitement–fewer people, shorter time, fewer things going on.  You may want to settle the person into  a smaller room, with a limited number of people around and not a lot of background noise.  As a disease like Alzheimer’s progresses, some people are reluctant to leave home–their own, an Assisted Living, or Nursing Home.  Wherever they are, the familiar is more important to them, even such a simple thing is knowing where their bathroom is and having it close by.   At some point you may want to consider bringing a small celebration to them at their residence, if they appear to be apprehensive about going out.  Consider trying to incorporate family rituals from the past.  They may not remember what happened last year, but because long term memory often is intact, something from their early married years, or even their teen years may be meaninful–singing carols, stringing cranberries and popcorn, baking cookies (even decorating ready made sugar cookies.)

Figuring out gifts for older relatives presents more challanges.  Think about consumable gifts–fruit, flowers, healthy snacks packaged in single servings, lotions made with calming essential oils like lavender or chamomile, or using a scent the person had always liked–lilac, lily of the valley, old spice–(with a promise of hand or leg massages.)  Useful gifts like a favorite newspaper or magazine subscription (my dad, at one time, logged with a pair of draft horses; he loved his subscription to the Draft Horse Journal and practically wore out each issue,) a pack of birthday , get well, sympathy and “thinking of you” cards stamped and with a promise to help address them when needed.   Gift certificates are sometimes a good choice–to the barber, the beautician, for a pedicure, for a concert, a movie, a restaurant, a play (including a promise to take them.)  Consider a calendar or picture book.  Major book stores always have bargain tables.  Look for something of special interest.  (Did your parents take a trip to Ireland?  Have dogs always played a part in his or her life?)  Make a chronological photo album.  (It’s a fun project to do with the care receiver–they can help with captions for photos and can direct where to place them on the page.  If you want to get fancy, you can even get some scrap-booking stickers to help decorate.)  As my Mom’s Alzheimer’s progressed, this photo album was a helpful tool in assessing where her memory was.  We could almost experience her memory being erased backwards.  At one point, she could not identify my father, my brother or my children, but she could name all the people in a picture of her visit to a farm in Wisconsin when she was a young teenager.  (And she felt quite pleased with herself that she could do it.)  The photo album becomes an aid to generate reminiscing, and clues to what things are still of interest to the person.

Flowers can be a wonderful gift and impetus for conversation and remembering, even grass and fall leaves–really!  My daughter brought a small inexpensive mixed bouquet from the supermarket every time she visited her grandmother.  They talked about family gardens, the colors, the feel of the various parts of the bouquet, and of course, the wonderful smells–terrific sensory stimulation.  One family brought a shoe box full of fresh grass clippings to Dad in a nursing home.  He had been the best lawn maintainer in his neighborhood.  He was pretty much bedfast, but you could tell he just loved running his hands through the grass clippings and smelling that familiar smell.   

It all boils down to “knowing the person” and adapting articles of interest to where the person is at the time (my mom was a fabulous knitter; as her Alzheimer’s progressed, she could no longer knit, but she truly enjoyed watching me knit, feeling the yarn, looking at the pattern books and remembering some of the projects she had made,)

Keep it simple!!!  

Care givers at Seniors’ Choice at Home in Minnesota, can help clients get ready for the holidays.  They can help purchase and address holiday cards, bake, help get ready and serve a small coffee party for the client’s friends, help with simple decorating and shopping.  Most of the time, errands and tasks are much more fun and doable when you have a good friend with you to help and talk about the task at hand and share good times from the past.

For more information, call Seniors’ choice at Home at 763-546-1599 or check out our website at www.seniorschoicemn.com

–Marilyn