5 things to do after a diagnosis

Though titled “What to do after an Alzheimer’s diagnosis,” I think most of the article applies to any diagnosis.  This article is directed as caregivers but some of it applies to those with a diagnosis.

According to the Next Avenue (nextavenue.org) article, the five things to do after a diagnosis are:

* Organize Documents and Resources
* Collect Memories
* Continue to Do Enjoyable Things
* Plan Care Options
* Prepare for Anticipatory Grief

Here’s a link to the article:

www.nextavenue.org/after-alzheimers-diagnosis/

What to Do After an Alzheimer’s Diagnosis
Taking these concrete steps will help you cope later on
Next Avenue
By Amy Florian
January 20, 2017

Robin

Anosognosia (lack of awareness) in dementia

Someone on a frontotemporal dementia online support group recently suggested this “Senior Living Blog” post on anosognosia, which is a lack of awareness of impairment.  Though this post is focused on Alzheimer’s Disease, I believe it can affect those with non-AD dementias as well, such as LBD, PSP, and CBD.

Obviously if the family member has anosognosia, this is a difficult situation for the caregiver who wants to provide care and work with physicians to provide treatment.  Of course many of us think that our family member must be in a state of denial, when it’s really anosognosia.  Sarah Stevenson, the author of the “Senior Living Blog” post, addresses all of these issues.

Ms. Stevenson wisely draws on an AlzOnline article about anosognosia; it’s one of the best articles I’ve read.  See this email from 2009:

www.brainsupportnetwork.org/dealing-with-anosognosia-unawareness-of-decline-or-difficulties/

Ms. Stevenson also offers this suggestion:  Try reading “I Am Not Sick. I Don’t Need Help!” by psychologist Xavier Amador, a professor at Columbia University.  This book “provides practical recommendations for those who lack insight into their mental illnesses.”

Here’s a link to the post:

www.aplaceformom.com/blog/3-4-14-anosognosia-and-alzheimers/

Senior Living Blog
Anosognosia and Alzheimer’s
A Place for Mom
By: Sarah Stevenson
Posted On 22 Mar 2016

Good luck!

Robin

 

“Put End-Of-Life Wishes At The Top Of Your To-Do List”

This short article, in a Canadian online newspaper, offers a good reminder about putting your end-of-life wishes as the top of your to-do list.  The author notes that:

“Studies show that people who have conversations about their end-of-life preferences are much more likely to be satisfied with the care received.”

Four steps to guide conversations about your advance care plan include:

1.  Reflect on what makes life meaningful to you
2.  Find out your care options and choose a substitute decision maker
3.  Talk about your wishes
4.  Write it down — just like a will

These four steps are fleshed-out in the article. Find the article here:

www.troymedia.com/2017/01/19/put-advance-care-wishes-top-list/

Put End-Of-Life Wishes At The Top Of Your To-Do List
By John Muscedere, EvidenceNetwork.ca
Troy Media
January 19, 2017

Robin

5 Tips for Dealing with Family Conflict

Thanks to local therapist, Nina Poletika, LMFT, for sharing this resource with me.

The Mayo Clinic has a “Healthy Lifestyles: Caregivers” section on its website.  Mayo Clinic Staff offer suggestions for how caregivers can cope with various disorders.  Though this article offers suggestions for Alzheimer’s caregivers, I think the advice fits families dealing with all disorders.

Five suggestions are offered for families where there is conflict:

1) Share responsibility
2) Meet face-to-face regularly
3) Ask someone to mediate if needed
4) Be honest and don’t criticize
5) Join a support group, and/or seek family counseling

Some details behind each of these suggestions is provided below.

If you need help in the local area finding a counselor, let me know.  Or contact your local caregiver resource center in California (www.caregiver.org/californias-caregiver-resource-centers).  Or ask at a local senior center, support group meeting, or place of worship.

Counselors can also be family meeting mediators.  The social workers at Family Caregiver Alliance occasionally perform this task.  There’s also an academy of professional family mediators (apfmnet.org).

Robin

—————————-

www.mayoclinic.org/healthy-lifestyle/caregivers/in-depth/art-20047365

Alzheimer’s: Dealing with family conflict
Alzheimer’s disease can cause stress for families. Work through family conflicts together so that you can focus on what’s important.

By Mayo Clinic Staff
Last Updated Sept. 05, 2015

When a loved one is diagnosed with Alzheimer’s disease, the effects on the family can be overwhelming. The reality that someone you care for has Alzheimer’s can trigger a range of emotions — including anger, fear, frustration and sadness. Conflicts are common as family members struggle to deal with the changes.

To minimize conflict, address the issues together.

Share responsibility
When figuring out how you’re loved one will be cared for, consider each family member’s preferences, resources and abilities.

Some might provide hands-on care, either in their own homes or in your loved one’s home. Others might be more comfortable with respite care, household chores or errands. You and your family might also choose someone to handle financial or legal issues.

Meet regularly
To stay on top of your loved one’s care, plan regular family meetings. Include everyone who’s part of the caregiving team, including family friends and other close contacts. You might also share email updates with the entire family, or send updates through social media resources.

During family meetings, discuss each person’s caregiving responsibilities and challenges — and make changes as needed. Be open to compromise and possibilities you hadn’t considered on your own.

If your family meetings tend to turn into arguments, consider asking a counselor, social worker, mediator or other professional to moderate.

[This next suggestion in not on the Mayo Clinic website so I’ve adapted it from a Huffington Post article.]

Ask someone to mediate
Engage the services of a mediator when all else fails.  It can be helpful to involve a neutral third party.

Be honest
To help diffuse any tension, talk about your feelings in an open, constructive manner. If you’re feeling stressed or overwhelmed, say so — and then work together to brainstorm more effective ways to share the burden of your loved one’s care. Again, work with a professional if needed.

Be careful to express your feelings without blaming or shaming anyone else. Use “I” statements, such as “I’m having trouble juggling my own schedule with all of dad’s appointments.” Keep an open mind as you listen to other family members share their thoughts and feelings.

Don’t criticize
There are many “right” ways to provide care. Respect each caregiver’s abilities, style and values. Be especially supportive of family members responsible for daily, hands-on care.

Consider counseling
If you’re concerned that the stress of Alzheimer’s will tear your family apart, seek help. You might join a support group for Alzheimer’s caregivers, seek family counseling or ask for advice from your care team.

Remember, working through conflicts together can help you move on to more important things — caring for your loved one and enjoying your time together as much as possible.

Family conflict is common in caregiving

Thanks to local therapist Nina Poletika, LMFT, for sharing this article with me.

In this 2014 Huffington Post article, Marie Marley, PhD, discusses the kind of family conflict that is common within caregiving families.  Though the article focuses on Alzheimer’s, certainly these conflicts are not limited to those coping with only that disorder.

The most common types of conflict are:

* disagreement among the spouse and the children on what needs to be done.  This is especially the case when the well spouse is the husband/father (male).

* disagreement among the children on what needs to be done.  In blended families, add an additional layer of conflict which is “who should pay for it.”

In the article, Dr. Marley provides advice from the Mayo Clinic about addressing family conflict.  I’ll post separately the Mayo Clinic resources.

Here’s a link to Dr. Marley’s article on family conflict:

www.huffingtonpost.com/marie-marley/alzheimers-caregivers-5-t_b_5423283.html

The Blog
Alzheimer’s Caregivers: 5 Tips for Dealing With Family Conflict
Huffington Post
by Marie Marley
06/02/2014 05:02 pm ET | Updated Aug 02, 2014

Dr. Marley writes for the Huffington Post and the Alzheimer’s Reading Room.  On her website, comebackearlytoday.com, she has a compilation of all her articles.  Many of them contain repeated information.  For example, the 2014 article is largely repeated in a 2016 article.

Robin