Beyond the Burnout and GARD--Notes from the AARP November 2021 Webinar nad GARD November 2021

 AARP of California at Institute on Aging presented Beyond the Burnout Hear. They had 3 voices of caregiving speak to the issue of caregiver burnout, including author Patti Davis, Ronald Reagan's daughter, Roy Remer, Zen Caregiving Project's Executive Director, and Lily Liu, a family caregiver.

Notes:
In 2020, 48 million Americans are providing care to someone over the age of 18 (that's 1 in 5 Americans). Our healthcare system is dependent on unpaid family caregivers. And 93% of family caregivers report receiving no training on how to be a caregiver. 

November is Caregiver Month. I'm glad that caregivers are being recognized and given space to talk. But where is the tangible support? And how are things made better for them? There's a lot of talk about how hard caregiving is. How do we address the structural issues that make caregiving so hard? 

"We can lose ourselves in the information and avoid our emotional process," noted Roy Remer.

For Follow Up:

• What models exist for training cargivers? Remember to use https://bpc.caregiver.org/
  
  

 

Caring for Your Mom at Home

A woman from my hometown recently sent me an email with this question:

My mom is now living with us and someone said you might be able to tell me the names of some books to read.  She is having trouble remembering things, things that happened just a day ago. It is not just once in a while, it is all the time. She can't remember her grandson's names...it is killing me to see her this way.  Everyone tells me to just agree with her and don't tell her any different....but you know me, I need to tell her the right thing. Like if she says....he gave me the two pairs of slippers....I will say, No, Mom, he gave you the blue ones and the pink ones are from me. I want her to try and remember and by telling her, she says oh, yes, I remember. Am I wrong?


So, your mom is living with you now. That is quite an adjustment, but I'm glad she's in a loving home with family. Sounds like she is having some short-term memory problems, or dementia, and this could be caused by a lot of different things. To learn more about dementia, I recommend the 36 Hour Day. It's a great book for families facing dementia for the first time.

Most folks in the elder care world do suggest "meeting a person where he/she is," in other words, just go along with them and with whatever they believe as long as they are not harming themselves or others. Since your mom will likely not be able to recover the ability to remember events or people, correcting her will only make her feel bad and ashamed, or get agitated. So, you just smile and nod when she says that the cows are in the front yard eating blue hay. This can be difficult and very trying for family members, especially when you are living with it 24/7, so I recommend getting support from others. The Alzheimer's Association has some great recommendations on their website www.alz.org including a list of support groups that meet monthly. I strongly recommend connecting with others that are going through this; their insight and experience will be invaluable.

The other book I would recommend is the AARP's Caring for Your Parents.  And here is a blog that I really enjoy http://newoldage.blogs.nytimes.com/

I hope some of this helps.  Caring for a loved one at home can be difficult. Finding support from others will be helpful as you make this journey. 

Marriage and Dementia: A reflection

Recently, I met with a couple in the their late 60s.  The husband has been living with dementia for about seven years, and he is now living in an assisted living facility that specializes in memory care. The wife is living at home and still piecing together her own life.  I was struck and saddened by the cruelty of this disease.  Perhaps the wife still seems familiar to the man, but I am not sure he still knows her or even himself.  Their marriage looks nothing like what we think of as a marriage.  The partners sleep in separate beds, in separate areas of town.  She handles all of their finances, house maintenance, and family matters; he spends his days walking the halls of the assisted living community. 

When I first met this man, he was a tall, strong man; within two years, he has lost about 60 pounds and has a stooped posture.  His appetite is good, he sleeps regularly, and his moods are stable--this is about the best we can hope for.  In reality, his situation is as good as it gets.  The aids at his assisted living facility know him and keep him clean and well-groomed.  The psychiatrist's nurse practitioner is able to see him there and manage his medications, keeping his mood stable and is agitation abated.  So, this is what the disease gives us, a new set of expectations for a good life, a new reality. 

Sometimes I feel there is nothing I can say to the wife.  How can I address the magnitude of this kind of grief and long-term stress?  I try to accompany her along this journey, validating her feelings, encouraging her to take care of herself, and troubleshooting issues that arise.  I am glad they have money to pay for his care and enough left over for her to go see her family and take trips.  She has so much life ahead of her, and it seemed as if he would be with her along the way.  This disease stole those dreams, and I often find myself dumbstruck by that kind of cruelty.  My heart ached for them, and I feared ever having to face the shadow this disease could create of someone I love.