September 20, 2023

Quote of the Week:

“It's your reaction to adversity, not adversity itself that

determines how your life's story will develop.”

– Dieter F. Uchtdorf

Allow me to begin this newsletter with an enthusiastic and heartfelt THANK YOU to four extraordinary individuals: Gayle, Lasell, Elizabeth, and Tina. These remarkable caregivers have generously shared their personal stories about their caregiver journey with us during our recent webinar, "Voices of Caregivers: Stories of Strength and Resilience."

I have taken the liberty, with their permission, to create a short “reader’s digest” version of each of their stories. Please avail yourself of the recording we made here, where you can hear them speak for themselves!

Click play to watch the Caregiver Webinar recording below:

My husband Robert and I have been married 33 years (37 together) and he was diagnosed seven years ago with a variant of Parkinson’s; the Veterans Administration now speculates he doesn’t have Parkinson’s, but Multiple Symptom Atrophy, so testing continues. He has an 80% hearing loss from his service in the Army, and his symptoms have progressed to speech aphasia, loss of Executive Function, and significant dementia. He is basically dependent on most of his self-care.  

I came to DayBreak’s Caring for the Caregiver program in 2019, three years into this disease process. I was desperate for help and I thought I could learn how to make caregiving easy because I was still in denial about his decline. What I I learned, instead, was a lot about myself, and I also learned a lot about how “to handle this.” Here are two big lessons I want to share with you:  

Durable Power of Attorney (POA) for Economic Decisions and also Durable Power of Attorney for Healthcare: The important and simple message I learned just in time: Your loved one with a progressive disease that may involve dementia must appoint someone to represent their wishes for finances and healthcare — to speak for them when the time comes that they cannot do that for themselves (for whatever reason). Actually, everyone needs to do this, no matter your current health because your circumstances can change very quickly due to an accident, disease, etc.  

If the care-receiver is not considered competent by an attorney, this process is not easy and is more expensive and involves the court to appoint a guardian, or a second attorney to ensure the care-receiver’s interests are protected.   

With a Power of Attorney for Economic Decisions and a Power of Attorney for Healthcare, doors open and you can speak for your loved one, make all the financial decisions, and make all major decisions for them when they can’t speak for themselves. As POA you can close bank accounts, make a reverse mortgage, or sell a home all without your loved one’s signature. If your loved one has dementia and you have joint accounts and titles on property, these financial decisions are impossible to execute without a POA. You’ll have to go to court and go through a more expensive and arduous process with an attorney to get these documents in place. 

If you have property, you’ll also need a Living Trust for your heirs to avoid probate. A living trust, drawn up by an attorney, can include POAs, a will, and healthcare directives. When looking for a trust attorney, shop around. The documents the attorneys use are all the same and some attorneys charge significantly more than others.  

Also, it’s a good idea to put cremation or burial decisions in place, sooner than later. These processes will most likely be harder to handle when your loved one passes. It’s also less expensive to buy these packages while still living.

I am very fortunate to have the support of the VA as my husband receives benefits for a disability resulting from his service. No one wants to experience a disability when serving in the military but the VA takes care of their veterans injured during their period of service. I advise you to find out about and utilize all the benefits available to you through yours and your loved one’s insurance, Medicare, Medi-Cal, county agencies, etc. A support group is a great place to get this information and social workers are well informed as to what may be available to you.

Reframing:  Eventually, I realized that somehow, some way, I had to think about this on-going and worsening crisis differently. This is another place where the support group that I am in helped me immeasurably.  

I observed how some other caregivers were more at peace about their role with their loved ones but I didn’t quite understand how to achieve that. I was working on the thought process of reframing when, last year, my best friend of 40 years passed away from an auto-immune disease. We didn’t expect to lose her and it was a shock to everyone who knew her. After about six months I realized I had experienced some of the classic stages of grief – shock, denial, depression, sadness and, finally, acceptance. * I then realized for probably two years I had been grieving the loss of my marriage, because I had been feeling many of the same emotions.  

I came to see that I could no longer share anything with my husband, that I was making every decision that had to be made. My workload increased as I handled all the things that he used to help me with. The person I knew all those years was not really there anymore, and my marriage for so many reasons was never going to be the same. I decided to reframe my role to that of his nurse because it hurt so much less in that role, than to feel resentment and anger at the disease, or feel sadness as his condition continues to deteriorate. I felt a measure of peace, knowing I now care for the broken vessel that holds his soul. This reframing has relieved me of any guilt for going on a much-needed respite vacation without him, enjoy time with my friends, or continuing to live my own life through my self-care, hobbies, and interests.  

Something Karen Kelleher said to me really helped me when I was feeling especially overwhelmed, while trying to cement this new role I had identified for myself. She said, “You are in it, but you are not of it.” Yes, I am a caregiver and I am deeply involved in the process of caring for my husband, but it doesn’t have to define me or change who I am. I can still have my life, set goals for myself, enjoy respite time away, and enjoy my hobbies, and my friends. My life is as important as my husband’s and I won’t throw away these years giving everything and settling for nothing for myself.

Over these past four years, participating with DayBreak’s Caregiver support group, I have learned to ask for help and to keep an open mind. It has made it possible for me to hear the advice and receive the support. Caregiving is still challenging, but these days I have more happy moments than sad ones and I could not have achieved that milestone without the support of Karen Kelleher, Susan Musicant, and my fellow caregivers.  

* https://www.healthline.com/health/stages-of-grief

I am the primary caregiver for my husband John. Several years ago he began having a cascade of medical programs. Finally, he received a diagnosis of pure autonomic failure, resulting in severe bilateral glaucoma, causing him to gradually go blind; severe hypotension causing disabling dizziness. It has no cure, and it is progressive. He spends most of his days now in bed.

It didn't take long for me to realize, his medical catastrophe was precipitating something in me, I've come to call CPTSD or Caregiver post-traumatic stress disorder, or chicken little syndrome — "the sky is falling." I started to see disasters around every corner. I struggled with depression, guilt and despair. But gradually I was able to pull myself out to be there for John.  

They say: ”Caregiving is the hardest job you'll ever have." No pay, no benefits, on call 24-7, guaranteed exhaustion and heart break. And yet, this ‘job' has shifted my perspective on life. My husband and I can still love each other. Console one another. And I have found a way to ‘Mourn the losses and be grateful for what we have left’.

I have found a life-saving caregiver support group — where there are fellow travelers who know what I’m going through. They have helped me have perspective and empathy for myself. I know now how important it is to take time for myself to exercise, to find spiritual practice, and to read inspiring books -- like John Cabot Zinn's: Full Catastrophe Living.

Still sometimes I feel anger at my husband and his illness. ‘He’s sick and dying and he will never be able to catch me when I fall, again. Terrifying.’ How do you witness misery without being sucked down into the hole of despair? But I am able, finally, to say to him, to myself, ‘I know your struggle and I’m here to help you when you need me.’  

I know I must accept chaos. Live in the moment. Life can be heartbreaking, but also heart opening.”

“As the only child of my almost 100 year old father, an active World War II veteran, I discovered that I had to re-arrange and re-think my life when we became care partners four years ago. Actually, for his age he seemed to be quite independent. But one fall was enough to reveal his vulnerability on many levels. So together we figured out how to “work it out”. It is and has been a wonderful, truly collaborative project — for my father and myself.

"We found a place to live together on the west coast after he agreed to relocate from the east coast to be close to me and my family here. I put the

legal papers in order for me to have Power of Attorney for Finance and Health Care, and updated his will and Advanced Directive. And off we went: Me supporting him on several areas of “deferred maintenance” with health, medical and financial planning needs. He supported me as I completed the requirements to become an Interfaith Chaplain and Grief Support Guide — a new and very exciting professional direction for me.

"Two years ago, I discovered “Caring for the Caregivers ", a program run by DayBreak Adult Care: daybreakac.org (Bringing you this webinar, today.) Here I found resources to help myself and my father that I had no idea about. And I found new friends - important fellow caregivers from this support group who could really be companions on this challenging and heart-opening path. Very importantly, the group leader is there when I need her -- and sometimes I really have needed her ear and wisdom!

"My father and I are on a journey together now - learning about new programs and benefits to support us, building our care community, attending to our health, and having fun! We even took a cross-country road trip together in 2021 seeing very old friends and lots of family. We have created a media company called JohnBeckerTV and are making a documentary about our adventures, including how to make the most of a family caregiving partnership. We call it "The Dad Project: It's Never Too Late" and we are about to release a feature-ette of the longer film called, “8300 Miles'' showing the fun and heartfelt moments shared on the road trip. (Elizabeth shared a few moments from their film with us — check out the link to the webinar.)

"Here are my 5 Lessons on the importance of joining a caregiver support group:

1. Do it now. It's never too late or too early. You will find support and resources. I cant imagine how I managed before without them.

2. Connect with the Group Leader directly and personally. They can comfort you when you find yourself in a sticky situation and connect you to others in the group with similar stories, and needs.

3. Start now to prepare for your next steps. By listening to others in the group sharing, you can get an idea of what's ahead.

4. Make new friends in your support group. They know what you' re going through. Your old friends are important of course, but they really don't understand like folks in your support group. And you can be of great support to them! 

5. Take Care of Yourself and Share Your Story. Find meaning for yourself as you take care of your health, finances, fitness, and your goals for your future. Storytelling heals! Your story matters to you, your family and it's so important to share it with those in your support group."

I’m 61. I am my 92 year old mother’s only child. Seven years ago she was diagnosed with, at first mild cognitive impairment. She is a strong-willed, powerful and energetic person. Even today. She was diagnosed with dementia several years after the first diagnosis. It wasn’t very evident at first that her mental functioning was failing. As they say, she covered it really well.  

She was a leader in her community. She has a masters degree in education. Even at the age of 85 she was still working as a substitute teacher. But I must share that as a mother she was preoccupied and inattentive to my needs as a child. And this personality trait is still there challenging me now as I  take on this roll of caregiver — without being seen, acknowledged or thanked. She still sees herself as capable.  She doesn’t see how much she is dependent on others now. She has “driven” away every paid caregiver we have employed.  

Adding to this challenge for me is that much of our family is in Texas. They very much love my mother — as I do!  And not surprisingly they couldn’t see this cognitive decline from 1500 miles away.  Phone calls between them never revealed the extent of her decline. This last January, my cousin invited my mother to come visit her for a few weeks. Not surprisingly, it took about 2 or 3 weeks for my cousin to see that my mother couldn’t come back and live alone, in her home (which she loves!) And that it wasn’t going to work to try and hire caregivers (as stated above, as caregivers wouldn’t stay). I myself couldn’t move in with my mother and maintain either my physical or mental health.

On that subject — just to briefly say, several years ago I moved from my home and job in Vacaville, back closer to my mother in Oakland. I left my full time teaching position and got trained as  an assistant teacher — which meant a 60% cut in pay and more time and energy to help my mother.  

But much needed help has come for me and my mother! My cousins now can see the extent of my mother’s cognitive and progressive decline. They are keeping her there in Texas.  With the help of my spiritual practice I am getting help by stepping out of the role of “I can and must fix this for my mother myself.  Who else is there?”  I very recently got power of attorney for her health care and finances which now allows me to sell her home and use that money for her care.  

I am in several support groups:  Caring for the Caregiver, through DayBreak;   and an online program called Daughterhood at https://daughterhood.org/.  “Daughterhood is a community of people supporting each other in the challenges, realities, and joys of caregiving through connection, support, and education.”  

As they say, when you begin a flight on a plane:  “Should there be air turbulence and you are asked to put on a mask —  be sure to put the mask on yourself before your child or someone who is dependent for your care!”

I have learned so much and I hope by sharing my story I can help other caregivers.  “Put on your mask first.”  And, you really can’t do it alone!  If that’s a spiritual guide, other caregivers, your family…

Together, we can make a meaningful difference in the lives of elders 

and the caregivers who selflessly support them.

DayBreak is committed to offering essential support to eldeand caregivers navigating diverse difficulties. If you're acquainted with a senior who could find value in our care and coordination services, or if you're aware of a caregiver seeking assistance, encourage them to reach out to us at:

510-834-8314