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THE DEMENTIA DIARY

THE DEMENTIA DIARYTHE DEMENTIA DIARYTHE DEMENTIA DIARY

A Chronicle of Caring

A Chronicle of CaringA Chronicle of CaringA Chronicle of Caring

BARBARA'S RECOMMENDATIONS & RESOURCES

BOOK:

“The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease, Other Dementias, and Memory Loss” by Nancy L. Mace. This excellent resource will answer most questions about variations of behavior both physical and psychological in persons suffering from different aspects of Dementia. Very specific and helpful information which is critical to appropriate caregiving. Published in November 1st 1981 the book become immediate popular and received critical acclaim among non-fiction, health books. This book can be downloaded or read free online. It can also be purchased through most major book retailers.

SUPPORT GROUPS:

While most caregivers and family members initially are uncomfortable with joining a Dementia Support Group (myself included,) it is possibly the most important step to emotional health for caregivers. These groups exist in order for those who have had similar problems, to help each other. One need not be embarrassed by anything bothering them. The members have not only had the experiences, but are generous with the solutions they have discovered. Every city across the globe has local support groups. Search online or contact mental health organizations In your area.

ORGANIZATIONS:

  • UsAgainstAlzheimer’s (usagainstalzheimers.org) exists specifically for help with Alzheimers patients, offering interesting articles and suggestions specifically for those dealing with Alzheimer’s. Please note that Alzheimer’s is a specific condition which can only be diagnosed by a professional physician. They have videos and articles online to help.
  • The Alzheimer’s foundation of America (alzfdn.org) was founded in 2002 to assist in supplying resources for caregivers. Online virtual activity programs change every day.
  • The Dementia Society Association Foundation of America (dementiasociety.org) has an excellent website with answers to many of the questions you may have. Programs, classes, and much more are available.

ONLINE COURSES & LECTURES:

  • Teepah Snow’s lectures focus on taking care of yourself while also caring for the dementia patient in your life. She has the ability to identify the physical and psychological effect on the care-giver, and gives excellent suggestions as to how to reduce stress in the most difficult situations. She has a great sense of humor while addressing our reality. (Her videos can be found online.)

SLEEP APPS:

With the indescribable stress (although I do try to describe it!) of care-giving, the inability to relax sufficiently to enjoy a good night’s sleep is frequent. I discovered that looking at soothing videos of nature, listening to its sounds, listening to stories read by honey-infused voices, intended to relax…and listening to music specifically created for its calming effects on the sleep-center of our brains, can be a wonderful relief at the end of a difficult day of caring. I use the app CALM, which also offers meditation, yoga and other helpful therapies for the caregiver or any person experiencing stress. There are many others available. A search on Google for “Sleep Apps” will offer you a myriad of options.

MUSIC PLAYLIST:

Create a music library to please your patient. I use Spotify but there are many others to select from. Instead of endless hours of watching television which may be soporific, listening to one’s favorite music stimulates the memory core and creates instant pleasure. Music can be accessed on any electronic device…cellphone, laptop, pad, computer. Whilst it can be available at no charge on YouTube or Spotify, it is well worth the fees to receive non-stop music without advertisements interrupting. Your choice. 

ADULT COLORING BOOKS:

A friend brought Hubby a gift of a coloring book with sketches of fashion designs. Having been a clothing designer, he enjoyed adding to the designs with colors of his choice. Other adult coloring books are available. A great activity to do with one another! Perhaps beautiful gardens for the gardener, buildings for the architect, babies for the Grandmother, etc. If you cannot find appropriate coloring books, create your own with appropriate outline drawings, printed on white paper.

WALKING TOUR VIDEOS:

Where did your loved one grow up? What streets hold memories for him/her from their youth? Videos are available for many locations which simply take the viewer up and down the streets of many cities. Some have tour guides explaining the area, but even the ones which do not will be fascinating to the patient. Simply write into your search engine “Walking tour video New York” or the city of your choice, to see what is on offer!

PUZZLES:

Puzzles with physical pieces are best for the Dementia patient. They can be made of wood, or paper and the number of pieces should be limited to a small number. If selecting a puzzle online, find one which is colorful to make matching the pieces easier. No beige, grey or black and white puzzles! With online puzzles, you can select the number of pieces you want to use for the picture you select. Your patient may not be able to use the computer, but you can sit at the computer together and work on the puzzle. 

FOOD SUPPLEMENTS:

With eating problems which appear in Dementia patients, comes a serious risk of malnutrition. There are calorie/vitamin drinks such as Ensure, which patients find pleasant to drink and which can be blended with flavored yogurts, ice cream, or fresh fruits to make an excellent substitute when regular meals are rejected or insufficient. Discuss with your doctor which one is appropriate for your loved one. Although they might not require a prescription, there are times when having a prescription will entitle you to a substantial discount on the recommended product.

CHARTS:

I am supplying examples of documents that I created to help the caregiver and the patient create order out of chaos. I promise that they will improve your ability to handle many of the details now critical to the care of your loved one.

1. THE MEDICATIONS LIST: 


  • Create a list of medications. Keeping a list of your own (and/or) your spouse’s medications and schedule on your computer will make it easy to update as prescriptions or quantities are changed. You will be able to hand the list to a paramedic or hospital in an emergency situation. When necessary, you will be able to turn over the administration of medications to an employed aide or family member. With this list you will be able to reorder medications easily, and will be able to immediately know the dosage of each pill required. 

SAMPLE MEDICATION LIST:

28.

CLICK TO DOWNLOAD SAMPLE

2. THE WEEKLY SCHEDULE: 


  • There are many benefits to creating a chart similar to the one below for the person in your care.


  1. This chart is being created for the patient to be able to check it throughout the day. Depending on their individual abilities, they may even remind you that it is time for their shower or their pills Primarily, it creates order to their day. They experience satisfaction at being “in control” of their day. The patient checks off each activity as it is completed. It is a source of constant discussion. Even if it’s checked off incorrectly, having written in pencil allows for error! Place it on a clipboard and attach a pencil. Keep it available to the patient at all times.
  2. Having the schedule in writing is helpful for you as the caregiver. There are so many things one must remember!
  3. There will be times when a new caregiver must take over your responsibilities. (You may be unwell, or join an around the world cruise!!) The more that is in writing, the less disruption there will be for the patient if you need to be absent.  

SAMPLE WEEKLY SCHEDULE:

CLICK TO DOWNLOAD SAMPLE

3. THE MEDICATION SCHEDULE: 


  • Create a separate list of when medications are to be administered with their PURPOSE. Often the Dementia Patient will want to know why they are being given a specific pill. Having this list on their clipboard (I keep it under the daily schedule on the clipboard) makes it easy to show them why the pill is important. Trust me… this can be helpful!!

SAMPLE MEDICATION SCHEDULE:

CLICK TO DOWNLOAD SAMPLE

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