Big changes needed so we can spend our final months at home

Though this article is focused on big changes that are needed to “make care at home possible during the last six months of life,” I thought it offered some good questions to consider, such as the tradeoffs between safety and independence.

According to this Kaiser Health News (khn.org) article, experts say these big changes are needed:

1- Reallocating resources to the home setting such as with house-call programs.

2- Clarifying priorities and discussing tradeoffs such as safety vs. independence.  “If staying at home at the end of life is a priority, this has to be communicated – clearly and frequently — to your family, caregivers, and physicians, said Dr. Thomas Lee, co-author of the New England Journal of Medicine study and chief medical officer at Press Ganey, a firm that tracks patients’ experiences with care.”

3- Taking advantage of services designed for people who need help at home, such as palliative care.  Check out the website getpalliativecare.org to find programs in your area.

4- Getting needed help.

5- Building community.  Consider enrolling in a “village” program.

Here’s a link to the full article:

khn.org/news/how-to-spend-your-final-months-at-home-sweet-home/

How To Spend Your Final Months At Home, Sweet Home
By Judith Graham
Kaiser Health News
November 10, 2016   

Robin

“Many Caregivers Spend $7K Annually Out of Pocket” (more for dementia caregiving)

AARP conducted a study in July and August 2016 of nearly 2000 family caregivers.  Family caregivers whose loved ones had dementia had nearly $11,000 in out of pocket caregiving expenses (on an annual basis).  Family caregivers whose loved ones don’t have dementia had half as much out of pocket expenses.

Here are a few excerpts from the Kaiser Health News (khn.org) article on the AARP study:

* “Among the expenses caregivers cover are relocation costs for a caregiver or recipient; renovating homes with safety features such as wheelchair ramps and bathroom grab bars; assuming a loved one’s mortgages and other household payments; buying specialized equipment including wheelchairs, scooters and beds; covering insurance premiums; and paying for home care aides or respite services.”

* “Costs vary depending on the recipient’s age, independence and relationship to the caregiver, according to AARP. For example, attending to someone older than 50 costs more than assisting someone between 18 and 49, and caring for spouses leads to more out-of-pocket expenses than caring for friends or relatives. Household expenses account for the largest share of personal costs — 41 percent.”

* “The demands lead to life adjustments for caregivers: 45 percent reported they stopped taking vacations and 45 percent said they ate out less often to compensate for their extra costs.”

* “Many sacrificed personal essentials as well: 19 percent scaled back on their own doctor visits, 18 percent bought fewer groceries and 5 percent spent less on their children’s education.”

* “Caregivers surveyed reported that the time and energy they devoted to the task also affected their work lives. Nearly 1 in 3 reported changing hours, almost 30 percent took paid time off and 22 percent took unpaid time off.”

Here’s a link to the full article:

khn.org/news/study-many-caregivers-spend-7k-annually-out-of-pocket/

Study: Many Caregivers Spend $7K Annually Out Of Pocket
By Rachel Bluth
Kaiser Health News
November 14, 2016

Robin

“Words Matter: Speaking Your Mind” (notes from caregiver conference talk)

This post is about effective communication within the care team may be of interest to caregivers and care recipients.

Brain Support Network volunteer Denise Dagan attended the Avenidas (avenidas.org) Caregiver Conference in late October 2016.  She took some notes from the various talks.  Here are Denise’s notes from the break-out session talk by author Ruth Nemzoff on “Words Matter: Speaking Your Mind.”

Among other suggestions, Ms. Nemzoff recommends hiring a geriatric care manager.  The professional organization of geriatric care managers now prefers this specialty be called “aging life care professional.”  You can find the organization online at aginglifecare.org.

The Alzheimer’s Association has information about the usefulness of geriatric care managers, including questions to ask when hiring one.  See:
Robin
———————————————–
From Denise:
Ruth Nemzoff, author and speaker on family communications, is an expert at helping caregiver teams cultivate effective communication skills, cut through conflict, and eliminate drama.  We weren’t going to master all that in just an hour.  Instead, she shared with us some thoughts about how to treat someone who suddenly needs care, and building a team of various friends and family members.

Recently, Ms. Nemzoff had the eye-opening experience of being on the receiving end of care after a hip replacement.  She reframed her situation so as not to be overcome by depression, or boredom, and to find a distraction from the pain of recovery.  She focused, instead, on teaching her grandchildren  compassion.  The youngest was afraid of the changes in grandma, until she asked him to hand her things.  Then, he felt powerful, needed, and less afraid.  The older kids were creative in engaging with her, teaching her about electronic entertainment and useful apps, like Uber, until she could drive, again.  By actively enlisting the help of her family as their teacher, she was better able to accept their help.

Ms. Nemzoff has seen her share of family discord over caregiving issues, especially among siblings.  Strong feelings and resentments from past events do influence communication and decisions, especially during a crisis.  I had never heard the expression she shared, “Each child mothers their mother differently.”

Family members should agree; whomever is on site with the person needing care, and bearing the burden of decisions, has final word in any issue, even after discussion and/or disagreement – taking into consideration the opinion of the person needing care (or ‘caree’).  Caregivers should ask the caree what they want, in some detail, whenever possible.

Siblings should discuss how to share the burden of caregiving.  Each person possesses different skills and availability to help in some way.  Even someone out of state can do administrative tasks online (pay bills, file taxes, etc.).  Roles various caregivers play may change over time, so revisit this conversation periodically.

Communication improves with appreciation.  If you ask someone to take responsibility for a task, they are more likely to do it well, and offer more help, if you check in to see how it’s going and tell them you appreciate their efforts.

It is sensible to agree to spend the caree’s savings before dipping into the savings of family members.

If you have a family member who does’t ‘get’ the challenges of looking after your caree, ask them to stay with the caree for a few hours, as a favor.  They will see exactly what you deal with and, hopefully, be more understanding afterward.

Consider hiring a geriatric care manager.  They help plan and coordinate care of the elderly.  Ask at your doctor’s office or contact the professional organization of geriatric care managers at: www.aginglifecare.org/.

The Alzheimer’s Association has information about the usefulness of geriatric care managers, including questions to ask when hiring one here: www.alz.org/stl/documents/GCM_Tips.pdf.

It is not possible to avoid every crisis, even with a geriatric care manager on your team, but don’t despair.  Personal growth, deeper relationships, and good, can come out of crisis.

Ms. Nemzoff had a few suggestions for dealing with difficult issues between carer and caree, as well.

People will always do something for you that they would not do for themselves.  My Mom never liked going to the doctor, but when I said, “Mom, if my siblings find I am letting you skip appointments I will hear no end of it!  Please lets keep this one so I don’t have to listen to them gripe at me.”  She was more likely to get in the car when she saw it as making my life easier.

When trying to get someone talking who is reluctant to discuss a difficult topic, Ms. Nemzoff recommends generalizing other people’s experiences.  It provides an opening to talk about one’s own situation..  For example, “You know, Mom, I read that people with mild cognitive impairment can slow its progression by enrolling in activities for seniors.  The activity social interaction, and exercise is all good for the brain.  I bet we can find a senior program you would enjoy.”  Hopefully, ‘Mom’ will reply that is something she’s willing to do.

If your caree is reluctant to discuss medical options by dismissing them out of hand during an appointment, Ms. Nemzoff suggests making excuses (stopping at the bathroom or for some administrative task) on the way out, and snagging the doctor to get the information.  Share the options with your caree in a non-medical environment when he or she may be more receptive.

Ms. Nemzoff told a sweet story about a man with dementia who went to the bank every day asking for $100.  The teller knew him and always said, “Let’s have a look in your wallet and see how you’re doing for cash before withdrawing more.”  With a cup of coffee and a cookie, he would comply, have a nice chat and be on his way.  Ms. Nemzoff suggests we visit places where our carees want to do business independently, and inform customer service and/or sales people about our caree’s challenges.  Create a small, caring, neighborly community within the typically impersonal business environment.

If you are new to a circle of care, Ms. Nemzoff recommends asking the person needing care how you can be helpful; at least until you figure out what your role will be to him or her.  It’s a kind, generous, thing to do.

Finally, she recommends we start now discussing our own caregiving expectations with our loved ones, and revisit the subject often as circumstances change.  Talking about it now, will help communication and decision making go more smoothly later.

“Elder orphans” band together for support and advice (USA Today)

Having no children myself, I think a lot about who will manage my care when I’m older.  Or, more precisely, will my healthcare power-of-attorney know how to hire and manage the geriatric care manager who is managing my care?

This recent USA Today article addresses the topic of “childless seniors.  The author Kim Painter notes:

* About 20 percent of U.S. women now reach their 50s without having children, up from 10 percent in the 1970s.

* One third of middle-age adults are heading toward retirement years as singles, after never marrying, divorce or widowhood.

* Women are likely to be single or become single as they age, with more than 80 percent unmarried after age 85.

The article shares some ideas for possible living arrangements. Here’s a link to the article:

www.usatoday.com/story/life/2016/10/16/elder-orphans-aging-support-advice/91847270/

“Elder orphans” band together for support and advice
Kim Painter, Special for USA TODAY
6:06 a.m. EDT October 16, 2016

Robin