Resources for Caregivers

My Mom with her youngest great grandson, Isaac.

My mother was diagnosed with Alzheimer's disease nearly 15 years ago, and at age 94, is still able to recognize me, eat without help, and carry on a conversation.  She can no longer read, watch TV, or tolerate groups of people, because she can't keep up with dialogue and group conversation. However, she enjoys listening to music and says she has a good and comfortable life.  We cared for her in our home for 12 years, and she's been in a nursing home since August of 2016.

Some people succumb very quickly to Alzheimer's, but others, like my mother, are able to have a good quality of life for years following the diagnosis.  

The following links do not constitute medical or other recommendations for you, but are based on our experience and may give you a starting point when you are in the information gathering stage. Here are some resources that have helped us: 

1.  The Alzheimer's Association.  This has been the single, most helpful resource for me as a caregiver.    

2.  Most cities have Alzheimer's support groups for caregivers.  Our local Alzheimer's support group helped us through a difficult time when my mother was first diagnosed.  I attended meetings for about a year, and during that time was helped with finding an elder law attorney who in turn helped us through issues such as obtaining Durable Power of Attorney for Health and Financial needs.  To begin a search for local resources, the Alzheimer's Association has a data base here. Click the tab at the top of the page that says "Finding Local Resources."  

3. If at all possible, find an attorney who is a member of the Academy of Elder Law Attorneys.  This membership will at least provide evidence that your attorney has expressed an interest and may have some specialized knowledge regarding current elder law.  You want someone knowledgeable about such issues as Medicare approved resources for dementia patients, current Medicaid laws, and in the case of spouses, division of assets.  The Medicare home health benefit covers some types of skilled therapies.  

4.  Mini Mental Status Examination--Now, don't offend your loved one by playing amateur diagnostician, but this little test can be helpful in revealing whether further testing is needed.  At the time of my mother's diagnosis, our nurse practitioner administered this test.  Mom's score was 24/29.  

5.  Find out about current drug therapies, and seek help from medical professionals.  My mother experienced improvement when she began Aricept, Namenda, and a prescription anti-depressant.  She continues with these drugs and I feel they are responsible for her continued, relative well being.  There may be an adjustment period.  It took about a year for her to adapt to the medications.  Aricept gave her bad dreams for awhile, but this effect receded as we stuck with the therapy.  

6.  Video and book resources--With the wonders of the internet, you can always do a Google search, but it is better to obtain lists of dependable resources from your local chapter of the Alzheimer's Association.  I found resources by contacting The Heart of America Alzheimer's Association.  

7.  Ten warning signs of Alzheimer's  

8.  Legal planning and legal documents are available at Alz.org.  

9.  Depression is often a part of Alzheimer's disease.  I feel that treating my mom's depression greatly helped her cognition.  Consult your physician regarding this issue.  

10.  Extra help may be available, based on income.  Our Heart of America chapter of the Alzheimer's Association had a program called the Family Service Fund.  My mother qualified for their program that provided incontinence supplies. Other services may be available.  

11.  Your state's department on aging has valuable resources regarding choices in longterm care, in-home services, and many other topics.

12.  As a member of my mother's care team, I have familiarized myself with late stage caregiving strategies.  I feel I know Mom better than anyone else, and I have several times noticed needs even ahead of the competent and caring staff at the nursing home.  Even after a loved one enters nursing home care, he/she needs a patient advocate.  I consider myself a caregiver, still, although I have been relieved of the day-to-day burdens of being Mom's primary caregiver.

13.  We found dependable sources of information in local people who had traveled the road ahead of us as caregivers for loved ones. I made phone calls, sent numerous emails to friends and relatives, and even stopped folks on the street of our small town as I gathered information on Mom's behalf.  

14.  If you are in need of Scripture-based guidance and support, the Youtube video series I completed several years ago may be of help.  Much of the information from my caregiving book is included in these videos.  You can find week 1 of the series here.  A complete listing of links to each episode is available at my website, here.

I hope this post has provided some help for new caregivers as well as those who have been on an Alzheimer journey with a loved one for a longer period of time.  God bless you as you provide care to those you love.