Friendships..............

Just when you are going through a most difficult time, some friends seem to drift away. Interacting with someone who has experienced memory loss requires a different approach — one that not everyone is used to. You may have to communicate differently, or learn to expect unusual, unpredictable, uncharacteristic behaviors at times.

It’s OK for someone to feel a little uncomfortable with Alzheimer’s or Parkinson’s dementia. We’ve all been there. But trouble comes when that discomfort leads to ostracism, mistreatment and broken relationships.

What can you do? Be as honest and upfront about how you feel and tell people.

If they still can’t handle it, there is not much else you can do. For family, you can always refer them to the Parkinson’s Disease Foundation or other such groups, which can give them more specifics about the disease process.

Telling people how you feel may allow more family and friends to offer help. Be sure to accept their offers for help or invitations to activities together when they are made. It can help them understand the process and may bring them back into having a renewed relationship with you both.

Another very real possibility is that you may have to expand your social circle to include new friends who are going through similar life changes and who may be better able to understand your wives’ behaviors and your feelings. I invite you to one of the many About Seniors Caregiver Support Groups held each week at various locations in the Northwest Valley (you can visit our website for details).

Another great option is connecting with the folks at DUET.  Check out their website:  https://duetaz.org/

Take care……Regina

Anger issues.............


A Message From Regina

Anger is a serious problem for many caregivers whose loved one has dementia and more specifically Frontotemporal Lobe Dementia, which is often called FTD or FTLD. This particular dementia is characterized by two specific issues: changes in behavior and problems with language.

Beyond that, outbursts and behavior issues can occur when pain is present. When someone cannot tell you in words about pain, often they will act out in ways that seem more angry and combative.

As with any of the conditions people have talked about in this blog, consultation with your family doctor and a neurologist is recommended first to determine what might be going on. Write down on a piece or paper or in a journal your description of the activity when it happens so that you can bring that information with you when you see a doctor.

You are often the eyes and ears for your loved one. Beyond that, be aware of any arthritis, muscle or joint issues your loved one may have that might produce pain when he is moved or is moving. Behavioral and non-verbal signs often indicate that a person with dementia is hurting or is in pain.

Many doctors prescribe a routine pain medication like Tylenol to help.

Dealing with pain and behavior issues are both so difficult for the caregiver and for someone who cannot communicate his need. Take care of yourself, too……..Regina

Caregiver Strategies ......................


A Message From Regina

 

Hi Everyone…..
          At a recent Maricopa Library system book group, a member recommended “The Leisure Seeker” by Michael Zadoorian.  The basic plot is about a couple in their 80's.  She has terminal cancer and has refused more treatment.  He has Alzheimer’s and was diagnosed 4 years ago.  She “kidnaps” him and they drive off in their RV (The Leisure Seeker) against the wishes of doctors and children.  They leave Michigan with the goal of driving whole Route 66 and then visiting Disneyland.  One last adventure.     I think anyone who has had these diagnoses probably feels like running away from time to time.  However, the reality is that most of us choose to live our lives in our homes and with family and friends.  Let me know if you read it or if you want to suggest another book for folks to read. 
                                                             * * * * * * * * * * * *
          In a recent edition of “Alzheimer’s Today,” there was a very helpful article on caregiver strategies for helping a loved one with dementia with getting dressed.  Here are the 6 helpful hints for helping:
                     1.  Allow for extra time when necessary.  Be patient.  People can have trouble dressing in sequence.

                     2.  Be mindful.  What does that mean?  Realize that someone with dementia may have trouble communicating.  Their behaviors actually can help you in understanding what they need help with.  If they are resisting a piece of clothing, it could be too hot for them or may be uncomfortable.  Make sure clothes are soft and not restrictive.  Be aware of any skin irritations your loved one may have.
 
                    3.  Utilize flat and tag-less clothes.  Don’t you dislike those labels that scratch the back of your neck?  Well, it may bother your loved one too.  Flat seams are more comfortable as well.  You want to minimize pressure points.
                    
                     4.  Functionality is important.  Clothing with easy openings and/or Velcro can make dressing easier. 
 
                     5.  Your body language can help.  Gentle touch, smiles, eye contact can be reassuring.  Standing to the side can also be less confrontational.
 
                     6.  Give the person a say in the process.  Keep it simple and maybe let them choose shirt #1 or shirt #2.  Too many choices can be confusing.
 
          I hope this helps a bit.  Remember to take 5 minutes periodically for yourself too.  It’s a gift for you and your loved one when you can feel some relief.  Take care…….Regina
 

CHOOSING A REHAB IN OUR AREA


A Message From Regina

 

Hi Everyone.......

When someone has been in the hospital and needs more therapies before returning to his/her home, rehab may be needed. Be assured that we do have many fine centers in our area, and an online search for rehabs can assist in that search.  About Seniors can help you as well for no cost to you. 
If you attend a support group for help with your loved one, ask the members there if anyone has used one recently. That is many times a great resource. However, I always like hearing that people want to do their homework before choosing a location for a loved one.

Here is a definition I found online for what a rehab center is:
“A rehabilitation center is a facility that seeks to help individuals recover from a variety of ailments, some physical and others caused by substance abuse or mental illness. Some centers offer residential areas, where those being treated will stay overnight. Others are strictly outpatient facilities. Many will specialize in either physical rehabilitation, or substance abuse rehabilitation.

A physical rehabilitation center offering residential services often doubles as a nursing home, though depending on the setup, the patients may be kept separately. These homes are especially good for those who require a substantial amount of physical rehabilitation. Often, for those who live alone after surgery, a rehab center may be the only option until they regain their mobility. This allows them to have someone else focus on the daily duties, such as cooking and cleaning while they are able to work on physical and occupational therapy.

This type of rehabilitation center is often a cheaper option than a hospital setting. It also offers an intermediate level of care between the hospital and home environment. Further, there are usually full time occupational and physical therapists on staff. These individuals will often work with patients on a daily basis to help in the recovery process. This daily attention may provide the quickest path to recovery.”

So, as you read, rehab is usually less expensive than a hospital and offers therapies that help the person become more independent as they transition back to home. In Sun City West, “Choice” is a rehab center as well as a nursing home. Sometimes, rehabs and nursing homes are combined. In Surprise, there is Sante Rehab, and in Glendale/Peoria area there is Health South. Ask your physician and hospital social worker for their suggestions too.

For more information, visit these facilities yourself. That is often the best determination. Ask questions and observe. If you like a place or do not like a place, let that be your guide.  Please email me if you have any questions.  Take care……Regina

Happy New Year and Moments to Remember...............

   Hi Everyone…..      

Just because your loved one is challenged by dementia, it does not mean that the two of you cannot have meaningful moments.  However, remember these guidelines to keep  things simple and reduce a lot of noise and confusion for her when you want to share a moment.  Here are some ideas for helping you to connect:
          1.  Surprisingly, a cookbook or some recipes may start the person talking about a favorite recipe or holiday.
          2.  A piece of antique furniture, knick-knacks, old records, needlepoint projects, an article of clothing, even a dish towel, can work as catalysts for conversation.
          3.  Visit your storage area. If you're not having luck with the items that are in plain view, don't be shy about taking a trip to the wherever you store mementos  to dig out old photos, cards and letters, maybe a wedding dress. Personal props such as these can trigger a flood of memories and conversations.
          4.  Use scents. Without fail, certain smells bring back memories almost instantaneously. That may be because the sense of smell is the most primitive of our senses, and the last to fail. Even older adults suffering from advanced stages of Alzheimer’s usually respond to smells, albeit not verbally. For instance, their eyes may brighten or a smile may appear when they get a whiff of cinnamon, roses, fresh baked goods, peppermint, or coffee.
          5.  Create reminiscing cards. Browse magazines, newspapers, or the Internet to find images of items that you know will prompt a conversation, such as scenes from the Depression Era, amusement parks from a parent's childhood, places they visited on vacation. Paste the pictures onto pieces of cardboard and build a catalog of visual aids. The cards can be used by family members or healthcare workers who look after your parent.
6.  Lastly, don’t be hesitant to just sit and hold a loved one’s hand.  That simple  touch can be meaningful for her as well as for you.  There is great comfort often in the soft and gentle touch of a hand.  I hope this gives you some idea of what you can do to connect.  Take care……Regina


How to Select Home Care........


Hi Everyone……
          Another year is coming to an end.  The biggest holiday season of the year is upon us!  I hope you are taking good care of yourself as well as your loved ones.  Last month, I was telling you about the issues facing family caregivers.  One of those issues is how to be open to asking for help when you need it.  That help can come in the form of family, friends, neighbors, professionals, etc.  Have you ever considered non-medical home health care options?  A person coming into your home to assist you with meals, laundry, bathing, and just being a companion for a loved one can have great benefits to you and yours.  But, how do you choose a home health aide?  You have to pay attention when you are interviewing home care agencies and individuals.  Be aware that professional home care companies should be covering their employees who come into your home with insurance.  Be sure to have that one of your interview questions……is the person coming into your home covered by the company’s insurance?  Once that has been established, there are other questions you might consider asking.  Here is a small list:
          1.  How does the home care company find their employees and what are their hiring criteria?
          2.  Does the company do background checks and/or drug screening?
          3.  Are the aides certified in CPR or other health training?  You especially want to know if the health aide understands how to deal with Alzheimer’s or Parkinson’s if that is what your loved one has.
          4.  Can the aide help with lifting and transfers if necessary?  Can they help with bathing, dressing and toileting? 
          5.  How is the aide assessed by the company?
          6.  What happens when the regularly assigned aide cannot come to work on a particular day?
          7.  What happens if you are not satisfied with the care the aide is giving your loved one?  Can that aide be easily replaced?
          8.  How does the agency evaluate the quality of the home care the aide is giving?
          9.  Is there a supervisor assigned to an aide and how is the aide supervised?
          I am sure you can come up with more questions.  Write them down and be sure to ask them of the agency when you are interviewing to see which agency suits your needs best.  Do your homework, and that will greatly assist you in your decision making.  Consider extra help over the holidays when there can be more events and even stressors for you. 
          Please have a Happy Holiday season……enjoy these special days……take care……Regina

 

Caregiver Stragegies........


A Message From Regina


Hi Everyone…….
          Most everyone I know is either a caregiver, is going to be a caregiver, or may need a caregiver.  As we age, events happen which we cannot predict.  For some of us, it occurs gradually.  For some, an accident or diagnosis may change our lives more quickly.  How do we cope and face the tasks before us?  Because I have been a support group facilitator for caregivers whose loved ones had Alzheimer’s or Parkinson’s as well as having been a 24/7 caregiver myself, I am always interested in what human service agencies are doing to help.  Recently, I was reading a Caregiver Resource Guide produced by the AARP for Arizona specifically.  In the opening pages, AARP divided caregiver needs into 3 categories:  1) Get the type of assistance you need; 2) Connect with others; 3) Take care of yourself.  I agree with this set of three but also know that there is so much more that is needed to complete the picture.  Let’s break down the 3 areas and see what else can be suggested. 

  1. Getting the type of assistance you need:  How do you determine that?  What is that which is happening is so traumatic that you feel helpless?  My best suggestion is ASK FOR HELP.  You  may never have had to do this, but now is the time to find those resources which can make this transition easier.  Ask professionals like an agency for aging social worker, or your doctor or health provider network.  Talk with a parish nurse if you belong to a parish.  Ask friends and family you can turn to.  Don’t try to walk the path alone.  Remember too that no one agency or person has all the answers.  Keep the conversation going.

  2. Connecting with others:  This is not just talking with health professionals or family and friends.  Find a support group of folks who are dealing with the issues confronting you.  The Alzheimer’s Association has many support groups (About Seniors conducts a weekly group in our area for them). If you are dealing with Parkinson’s, the PMD Alliance is active and has many groups and resources for you.  You can find out more on these websites:  www.aboutseniorsaz.com and www.pmdalliance.org. 

  3. Taking care of yourself:  So many people put this at the end of their list of things to do.  We don’t feel as though we can take time away from our loved ones.  We feel selfish if we do that.  Believe me, that is wrong thinking!  Please remember that your health is very important for 2 people now.  What would happen to your loved one if something happened to you??  Make sure you go to your doctor’s check-up for your health.  Go to your dentist.  Exercise.  Take some time out from your caregiving responsibilities to re-charge your energy.  Two lives are counting on you!

          Another option for connecting is the internet.  You can browse and find more options for help in your community.  If you have questions, also feel free to email me at our website or go to our blog. 
          Have a Happy Thanksgiving and enjoy the simple pleasures of food and company that the holiday can bring…….take care……Regina


 

Healthy Aging from the “AFA Care Quarterly”


 


Hi Everyone……..
              One of the newsletters that I like to read comes from the Alzheimer’s Foundation of America.  It is always full of news and good advice for folks with AD and for caregivers.  However, a particular article from a recent edition holds good advice for all of us!  Since many of us will live longer lives than previous generations, we want to know how to live our best life.  There are studies on longevity in our communities and lots of talk about those areas where people live longest in this world…..the Blue Zones.  A lot of what results is really common sense and includes things that all us know.  So, I am going to use the AFA’s outline here for you to peruse and consider (my comments will be in the parentheses):

  1. Eat well (We all know that fried foods, red meat, sugar, taste awfully good, but try to limit or reduce your consumption of these and add more veggies…..even one more serving a day can help.).

  2. Stay active.  (Aren’t we fortunate to live in communities with rec centers?  Use them!).

  3. Learn new things.  (Again, we are lucky to live in an area where there are so many options for fun courses as well as college courses.  Like to cook?  PORA offers cooking classes with a real chef from time to time.  Learning another language and traveling qualify too!).

  4. Get enough sleep.  7 – 9 hours is good.  (I know that if I do not exercise in a day or if I have coffee, tea, chocolate after noon, I do not sleep well.  Do some sleuthing to find out what it is that is disturbing your sleep if you are having problems!).

  5. Mind your meds.  (Medications react differently for people.  Talk with your doctor or the local pharmacist to see what reactions your meds may cause.).

  6. Stop smoking and limit alcohol.  (Enough said!).

  7. Stay Connected.  (This is SOOOOO important!  Recent studies have shown that this may be the most important thing we all can do to stay healthy longer.  We are social beings and contact with others is essential.)

  8. Know your blood pressure.  (If you are getting your regular check-ups, this shouldn’t be a problem.  If you feel any changes in your system, see your doctor.  Also, have a blood pressure cuff at home.  It could help.)

  9. See your doctor.  (As I mentioned above, this should be a regular part of your year.)

  10. Get a memory screening.  (I am not sure that I am entirely on board with this one.  That is mostly because there are no cures for memory loss at this point unless the loss is caused by a physical problem.  However, if you want to see how you are doing, by all means have your memory checked.)

                                             Be well……take care…..Regina
     

Disclosures for Placement Companies........


A Message From Regina

Hi Everyone…………

          This month, I want to talk with you about some recent developments in our referral and placement industry. First, we are proud to announce that About Seniors is now a member of PASRS (Professional Association of Senior Referral Specialists). PASRS is a local Arizona-based trade association consisting of referral specialists, care communities, non-profits (like the Area Agency on Aging) and other organizations who adhere to a higher standard of service and assistance for those families looking for help with placement or senior eldercare services.  Be sure to look for PASRS membership logos when using a placement specialist. 

In addition, the governor of Arizona recently signed legislation into law, called HB2529.  We at About Seniors anticipated and fully support this law.  In short, it requires all referral companies (national companies doing business in Arizona too) to disclose conflicts of ownership or interests in facilities and communities.  It also requires a referral business to disclose fees and how much a referral company will be paid by facilities, when providing services. Failure to do so will result in financial civil penalties for any company or facility that fails to provide these disclosures.  We feel this law helps bring professionalism to our industry and supports the rights of clients and caregivers to know certain things and avoid being mislead. 

So be sure that any placement agency you work with, About Seniors included, gives you a disclosure to sign which acknowledges that you have been apprised of the fees paid by any facility to that placement company.   If you have any questions about this new disclosure ruling, please email me or call the phone number listed below and speak with a referral specialist.  Be well…..take care…..Regina

Travel Plans are Important!


Hi Everyone……
I used to facilitate Alzheimer Caregiver Support Groups and Parkinson’s Caregivers Support Groups.  It always surprised me when caregivers were planning little driving trips with their loved one or even going some distance by airplane.  You certainly can still travel when someone has limitations, but you do need to spend some time planning.  Recently, I found this information on a caregiver.com website.  Here are some of the more salient bits of information and notes from me inside parenthesees:
 
“Advise hotels, airlines, tour operators, or people you are visiting that you are traveling with someone with memory impairment. Be specific about your safety concerns and special needs. If you are staying in a private home, guest home, or bed and breakfast, do not surprise your overnight host with your loved one's condition. Explain it fully, well in advance. Do not think they won't notice. Don't be upset if they feel they cannot handle the visit—especially if there are children in the home.

  • Never travel without a full set of reservations……(if flying, be sure to use TSA and notify them in advance!!)
  • Always provide family members with an itinerary and call home regularly.
  • Make a list of the daily routine and special items you need to take with you.  (Get a zip envelope easy to carry for these papers)
  • Always have the person with memory loss identified, preferably with a bracelet your loved one cannot misplace.  (Check with the Alzheimer’s Association for these)
  • Use good judgment when telling your loved one about the trip. Discussing it too far in advance may produce anxiety and agitation.

(Be cautious with this tip.  A loved one can obsess about travel if you talk about it too soon)

  • Be flexible. Have a contingency plan that allows you to leave early if your loved one becomes ill, agitated, or wants to go home.
  • Keep your sense of humor and laugh at all the things that happen. They will be part of a wonderful memory of your travels together.
  • If the trip is prolonged, develop a list of medical professionals and Alzheimer's Association chapters along your route.
  • Never leave your loved one alone or ask strangers to watch him/her. A person who does not know your loved one or the disease will not know how to react in a difficult situation.
  • Avoid traveling at peak travel seasons such as Thanksgiving and Christmas
  • Take medications with you to manage stomach upset, diarrhea, or other temporary problems caused by changes in food and water.  (Be aware of incontinence issues too.  Diapers may be necessary)
  • Get help and find out who can help in countries where you do not speak the language.  (Plan ahead!!)
  • Search the internet or check the Yellow Pages to see if there is a travel agent in your area specializing in planning trips for people with disabilities. If so, use the specialized service.  (Again, the Alzheimer’s Association and/or Parkinson’s groups may help)
  • Enjoy each day and the little pleasures each day can bring………take care…….bon voyage…..Regina