Archive for Caregiving Tips

Our Story to Diagnosis on the Alzheimer’s and Other Dementia Roller Coaster

Hello, readers! I am excited to share a post with you that was written by a guest contributor. This caregiver’s journey toward getting a diagnosis for her husband was quite the roller coaster and took many twists and turns. Please read on to learn more about her and her spouse’s experience, and her advice for other caregivers. 

diagnosis

It all began in August of 2016, when after answering the same question for the fifth time in as many days to my husband of 26 years I decided to keep track of things I thought might not be normal. In mid-October I sat my husband down and told him I was going to go to with him to his annual check-up in November. He asked “Why?”.  I simply stated that I had noticed some things that concerned me about his cognitive state. He looked puzzled but agreed.

On November 22, 2016, with a little over two pages of notes and the Alzheimer’s Association’s Preparing for Your Doctor’s Visit sheet in hand, we were ready for our visit.  Dr. H. came in after reviewing the documents, sat down across from us, and said he would like to do some testing. Dr. H. administered a mental status exam, and unfortunately, the test results indicated that my husband was cognitively impaired. With a series of blood tests and a CT scan scheduled to take place before our next appointment in December, we left the doctor’s office with our heads swimming!  I asked my husband, through tears, if he was mad at me. I told him it was ok to be mad at me.  This is not what I wanted, but I couldn’t stand by with my head in the sand and pretend that nothing was wrong!

During this time, I was watching my husband go to work and come home with nothing left to give because he was trying so hard to keep it together at work. I decided that we needed some advice so I called the Alzheimer’s Association Helpline on a snow day off from school. They helped to talk me through the situation and even talked to my husband

As roller coasters do, ours was about to take a plunge down a steep hill!  At our neurology appointment in April, we were wretched about the tracks as Dr. R. told us he feels certain that Jack does NOT have Alzheimer’s but another form of dementia, possibly Frontotemporal Dementia (FTD). Dr. R. explained that my husband’s behavioral changes and his age were indicative of FTD.

One of the hardest things about dementia and especially the one we may be facing is:

  • That family and friends don’t understand he looks healthy and can hide it well for short periods of time.
  • They don’t see this man sobbing because he’s afraid he’s going to forget you and he does not want to be alone going through this.
  • They don’t see the fear in his eyes when he can’t figure out how to turn the shower off.
  • They don’t see the agitation that he can’t explain.
  • They don’t see how much you just want your old life back.
  • They don’t see that you will go to the ends of the earth for this man to keep him safe and at home with you.
  • They don’t understand how isolating it is for us both.

I know that one day this roller coaster ride will be over but for now it’s the ride we’re on. And it’s definitely not one to be on alone!  So friends, if you are on a similar roller coaster ride, pick up that phone and call for help!  You are not alone! Call the Alzheimer’s Association 24/7 Helpline at 1.800.272.3900 for support.

Leave a Comment

Keeping Your Loved One Safe

Location Devices

According to the Alzheimer’s Association, as many as 6 in 10 people with dementia will wander at some point during their journey with the disease. This behavior becomes dangerous when an individual with Alzheimer’s becomes lost and disoriented.  The person may no longer remember their address, locations they were once familiar with, and possibly their name. The following products are designed to keep your loved one safe in case a wandering incident does occur.

MedicAlert + Alzheimer’s Association Safe Return® MASR

The Alzheimer’s Association MedicAlert + Safe Return includes:

  • A personalized identification bracelet for the person with dementia to wear
  • A personalized emergency card for their wallet, on the card is their member identification number and the emergency toll-free number
  • 24-hour emergency response service
  • Optional identification bracelet available for the caregiver to wear, which alerts anyone in case of an emergency that this person is caring for an individual with a MedicAlert + Safe Return services

For more information:  Visit www.medicalert.org/safereturn or Call 1-888-572-8566

PocketFinder GPS Senior Tracker

PocketFinder GPS

  • Allows you to see the location of your loved one that is wearing the PocketFinder on them
  • Allows you to view location on the app or on the computer
  • For more information: Visit www.pocketfinder.com/gpsseniortracker/

GPS SmartSole®

  • Has a GPS device located in the sole of the shoe and works like smartphone technology
  • Refreshes and checks in with you every 10 minutes letting you know where your loved one wearing the GPS SmartSole® is located

For more information:  Visit www.gpssmartsole.com/gpssmartsole/ or Call 213-489-3019

Freedom/Pal GPS Watch

Freedom Pal GPS Watch

  • A watch with a GPS tracker in it that your loved one wears and a receiver that the caregivers has
  • Allows you to view your loved one’s location via the website or your smartphone
  • Allows you to set zones that are safe and alerts you when your loved one is outside of those zones

For more information:  Visit www.rmmedicalsales.com/products.html or Call 952-457-3401

Mobile Help GPS

Mobile Help GPS

  • Mobile Help is an emergency help button that requires the person wearing it to press the button, which alerts the 24-hour emergency call center.

For more information:  Visit www.mobilehelp.com/ or call 1-800-992-0616

Micro GPS Tracking System

  • Can be used for your loved one or for the car
  • Options to set safety zones and when your loved one is outside of the set zones you will be alerted.

For more information:  Visit www.gpstrackingtracker.com/Senior-Adult-Trackin or call 1-561-235-7878

Keruve Family Direct Locator

Keruve Family Direct Locator

  • A watch with a GPS in it
  • Has a safety lock so that it cannot be removed by your loved one wearing the watch
  • Can locate your loved one by simply pressing a button located on your receiver and their location and position will appear on a map located on your receiver

For more information: Visit www.keruve.com/ or call 530-303-8893

Leave a Comment

Join a Support Group

Have you ever thought about attending a support group but were reluctant to give it a try?

photo_support_groups

Support groups are a safe place to share feelings and experiences, and many people find them to be invaluable resources.

A support group is a place to:

  • Exchange practical information on caregiving problems and possible solutions
  • Talk through challenges and ways of coping
  • Share feelings, needs and concerns
  • Learn about resources available in your community

All of our support groups are facilitated by trained individuals. In addition to caregiver support groups, we also have support groups designed specifically for people in the early stages of Alzheimer’s. We are currently offering early stage support groups in Birmingham and Taylor (and soon, in Sterling Heights too!). To learn more or to register, please dial our 24/7 Helpline at 800-272-3900.

Want to find a Alzheimer’s Association support group near you? Click here. Prefer to get support online? Join AlzConnected, our online community.

Leave a Comment

Practice Home Safety

Comments (2)

Tips for Managing Dental Hygiene

geriatric dentist

Dental care can be a challenge for individuals with Alzheimer’s because of their inability to understand the purpose of brushing teeth or to accept help from others.

Tips for helping the person with dementia manage dental care:

  • Provide short, simple instructions: “hold your toothbrush,” “put paste on the brush,” and “brush your top teeth,”etc.
  • Use a mirroring technique — hold tooth brush and show person how to brush his/her teeth or brush your teeth at the same time
  • Brush teeth or dentures after each meal and floss daily
  • Remove and clean dentures every night
  • Brush person’s gums, tongue and roof of mouth
  • If person refuses to open his/her mouth, try using oral hygiene aids available from the dentist to prop the mouth open
  • Strained facial expressions during dinner or refusal to eat may indicate oral discomfort
  • If you notice dental or gum problems, take the person to the dentist
  • Notify the dentist in advance that person has Alzheimer’s so that an oral care routine can be developed

 

Leave a Comment

Home Safety and Alzheimer’s Disease

family in home

 

When caring for an individual with Alzheimer’s disease at home, safety is an important concern. People living with Alzheimer’s can remain in their homes safely for a longer period of time if safety issues are addressed. Safety issues evolve as the disease progresses, so be sure to reevaluate safety periodically.

Tips for Home Safety

Accommodate for Visual Changes

  • Use contrasting colors on walls, trim and floors to help the person anticipate staircases and room entrances. This technique is also effective in the bathroom, where a white toilet and sink may be hard to see against a white floor and wall
  • Changes in levels of light can be disorienting. Try to maintain consistency in lighting the home and keep it well-lit
  • Add extra lighting in entries, areas between rooms, stairways and bathrooms
  • Diffuse glare by removing mirrors and glass-top furniture
  • Cover windows with blinds, shades, or sheer draperies as needed to control and diffuse the light
  • Use night lights

Avoid Injury during Daily Activities

  • Lower the temperature of tap water and monitor food temperatures if possible, to prevent the person from accidentally getting burned
  • Install walk-in showers, grab bars and non-skid decals on slippery surfaces
  • Provide the appropriate level of support to the person when taking prescription and over-the-counter medications

Beware of Hazardous Objects and Substances

  • Remove guns and ammunition from the home. Until guns and ammunition can be removed safely, lock them in a spot where the person with Alzheimer’s cannot access them. Never store weapons loaded.
  • Limit the use of mixers, grills, knives, and lawnmowers
  • Lock up hazardous materials that could be ingested
  • Supervise smoking and alcohol consumption, and limit or eliminate their use when possible
  • Move items that might cause a person to trip, such as unsecured throw rugs, floor lamps and coffee tables to create unrestricted areas for movement
  • Clean out the refrigerator regularly, and discard expired food

Prepare for Emergencies

  • Keep a list of emergency phone numbers and addresses by every phone, as well as a list of all prescriptions and dosages
  • Regularly check fire extinguishers and smoke alarms
  • Enroll the individual and caregivers in the Medic Alert + Safe Return program prior to any wandering incident. This helps protect the person with dementia, as well as ensuring that he or she will get needed care if something happens to a caregiver
  • Consider using Comfort Zone to monitor the person’s whereabouts. Caregivers or other family or friends can receive computerized alerts when the person with Alzheimer’s wanders out of a pre-set range, or can be checked in on throughout the day
  • As the disease progresses into the middle and late stages, take these steps to make dangerous places less accessible:
    • Lock or disguise hazardous areas
    • Install door locks out of sight, but only keep locked in this way when someone is home to help in case of an emergency
    • Use safety devices, such as childproof locks and door knobs, or hide door knobs with a cloth or painted mural

Leave a Comment

Planning for Hospital Stay and Discharge

medfr13359

A planned hospitalization or unexpected health emergency can occur at any point during the disease progression and may or may not be the result of Alzheimer’s or another dementia.

A hospital visit or overnight stay can cause anxiety or discomfort for the person with the disease. The change from home to an unfamiliar environment and the added stress caused by medical interventions may lead to increased confusion or disorientation. Knowing what to expect during a hospital visit can help make the experience more comfortable for everyone.

Plan ahead

In the early stages of the disease, the person with dementia is able to make decisions on his or her own behalf and should be included in all conversations about medical care. It is important to address wishes for health care, including emergency medical treatment, as early as possible so that family and care team members can confidently implement the plan in the event the person is no longer able.

As the disease progresses, it will become increasingly difficult for the person with dementia to understand the purpose of hospital visits and medical intervention, and he or she will be unable to participate in the health care planning process. The care partner or a member of the care team should always be present to explain the reason for the hospital visit or medical intervention as much as possible and provide support and act as an advocate on their behalf.

Consider the following:

Prepare an emergency kit with legal paperwork and current medical information. This information should be available in an easily accessible place such as in an envelope attached to the refrigerator. Some items include:

  • A list of current medications and allergies
  • Copies of legal papers (e.g. living will, advance directives, power of attorney)
  • Insurance information
  • Name and phone number of physician
  • Names and phone numbers of emergency contact and additional care team members
  • Request for brain autopsy or organ donation
  • A physician’s note confirming the diagnosis

Review current legal documents stating preferences for health care, including life-sustaining treatment. The following documents may help prevent an emergency decision from taking place and provide assurance that the wishes of the person with the disease are upheld.

  • Power of Attorney for Health Care: Names a health care agent to make health care decisions on behalf of the person with dementia when they are unable.
  • Living Will: A type of advance directive that includes preferences for medical treatment, including life-prolonging treatments.
  • Medical Release of Information: Ensures that a doctor can share information with the person’s family member or friend. This can be beneficial to those who are helping coordinate care.
  • Hospital Visitation Form: For those in a domestic partnership, hospitals in some states may enforce strict visitation laws and/or require special forms if relationship is not legally recognized in that state.
  • Do Not Resuscitate (DNR): A physician order to prevent any attempts at revival, particularly if CPR or defibrillation is needed.  Without it, medical professionals are required to perform resuscitation.

Prior to hospitalization

  • Share information regarding the diagnosis, other medical conditions or allergies with the entire medical team.
  • Provide information about personal habits, dietary preferences or any environmental needs like a private room that would make the experience more comfortable.

Ask questions

  • Which procedures will be performed and how? What are the risks and benefits, expected results and expected length of recovery?
  • Is assessment or treatment available at an outpatient clinic?
  • How long is hospitalization required?
  • If anesthesia is used, how will this affect cognition?
  • What are the visiting hours? Are extended hours available?

Hospital discharge planning

At the end of a hospital stay, health care providers will make recommendations for long-term care needs and recovery following hospitalization. A member of social services or a discharge planner may also be involved if the care plan calls for in-home services, referrals to rehabilitation facilities or outpatient services. Post-operational or discharge orders may involve several components including new medication, therapy, wound care or monitoring.

The following questions may help the individual and their car team to prepare for discharge:

  • Which activities may require more assistance after discharge?
  • When is it safe to engage in physical activity?
  • What is the safest way to manage pain?
  • Have medications changed and how often should they be administered? Which signs or symptoms are causes for concern? Who should be contacted?
  • Is a follow-up visit necessary? When will this occur?

Leave a Comment

Older Posts »