Advice from a spouse caregiver (eight items)

I read this advice today on a Yahoo!Group from a caregiver whose husband has passed away. You might find some value here.

Here are some things that helped us:

1. [My husband] wanted to know what was happening, so he uses his computer to research the disease in the early stages. I was able to help him with good resources. I’m both a nurse and a librarian, so this was easy for me. You might want to seek out the assistance of a reference librarian if this would be helpful for you. … We even enclosed [some print information about the diagnosis] with our Christmas newsletter shortly after [my husband’s] diagnosis. Learn enough to get a sense of what to expect, but don’t obsess. No two cases are exactly alike.

2. I wish I had set aside more time, especially early on when [my husband was] still was able to get out and about, to make plenty of memories to hold onto after he was gone. But I’m eternally grateful for those we did make time for. Even after he was home bound, we did some fun things together and with our adult sons. It was good for them to have those good memories, too.

3. Make a detailed list of things other people could help you with. You may not need or get them all, but make the list anyway. When friends ask what they can do, you’ll not be able to think of anything otherwise. With the list, you can choose something that person is especially suited to do and ask for that. When you’re feeling in over your head, use the list to seek out help as well. Do not hesitate to ask! You have people in your life who love you and/or Ted and want to help, whether you realize it or not – neighbors, church or other organization members, coworkers and/or former coworkers, community volunteers, family members. Don’t hide your needs and you’ll be surprised how much help is there you didn’t even know about.

4. Consider bringing hospice in sooner rather than later, especially if they offer palliative care in your area. They aren’t just for people who are actively dying! Mike started getting hospice services when he was still going to work every day, and was with them for nearly two years. They were immensely helpful with equipment, supplies, respite, ideas for workarounds, volunteer companionship and project assistance, finding facility care when the time came, nursing care and communication with [my husband’s] primary care doctor and neurologist, emotional and spiritual support, you name it.

5. Get the equipment you need when you need it, but don’t get ahead of yourself and spend a lot of money on expensive equipment you may only need for a short while. Hospice can *really* help with this. For the big ticket items, think about how you’ll be able to use them after [your husband] is gone. (I know. It’s hard to think about his being gone at this point. And you shouldn’t dwell on it. But do be practical.) we bought a recliner/lift chair that [my husband] basically lived in for more than 1 1/2 years. Almost two years after he left me, I’m still using it daily. We also bought a recumbent exercise bike so [my husband] could continue exercising after he could no longer ride his regular bicycle. …

6. If you haven’t done so already, get a durable power of attorney for yourself and set yourself up as the designated payer for social security. [My husband] was nervous about doing this, but he knew it was necessary. I kept him in the loop and got his agreement with every decision, and that let him know he could trust me to make the same decisions he would. His cognition was slow but lucid until the end, thankfully. Some people have to make those decisions without input from the person they are making them for. We waited almost too long to set the social security thing up because we didn’t realize they didn’t recognize a POA. Once [my husband] could no longer sign his name or speak clearly on the phone, both were essential and I was glad we had the foresight to put them into place before we got that far.

7. Know that when you are stressed, it may be hard to figure out what to do first even with simple things like getting up in the morning. I made myself index cards for the bathroom and kitchen with step by step instructions for morning and evening routines (4 cards). Then I put them back to back in two snack size ziplock bags to waterproof them. When I was so overwhelmed I was paralyzed just trying to figure out whether to brush my teeth or take a shower first, all I had to do was follow the list. I still use the bathroom list sometimes.

8. Keep a variety of grab and go meals on hand for when cooking or even planning is just too hard. If you have a good size freezer, use it liberally. Same goes for you slow cooker. When you do cook, make big batches and freeze single-serve microwaveable portions. If anyone offers to bring you a meal, let them!


2017 Accomplishments and Year-End Challenge Grant (for contributions by Dec. 31st!)

As 2017 ticks down, we hope you enjoy some quality-time with family and friends. We wanted to share our results for 2017. Plus, this is a great time to make a charitable contribution as other generous donors are doubling your contribution.


Brain Support Network (BSN) continues to pursue its three missions:
(1) create and disseminate information on LBD, PSP, MSA, and CBD to members (You are one of 450 Northern Californians on our network’s email list.)
(2) coordinate the local caregiver support group in San Mateo
(3) help any family with brain donation.

We (BSN volunteers and part-time employees) have kept busy in 2017:


Brain Support Network (BSN) continues to pursue its three missions:

(1) create and disseminate information on LBD, PSP, MSA, and CBD to members

(2) help any family with brain donation

(3) coordinate the local caregiver support group in Northern California

We (BSN volunteers and part-time employees) have kept busy in 2017:

* We sent out over 250 email updates, most of which focused on one of four specific disorders: LBD (Lewy body dementia), PSP (progressive supranuclear palsy), MSA (multiple system atrophy), and CBD (corticobasal degeneration). Many emails relate to caregiving and dementia caregiving.

* We published over 600 Facebook posts on similar subjects (because some people prefer Facebook).

* We served as a clearinghouse of information and support for network members.

* We have kept our web site relevant and up to date (e.g. our “Top Resources” lists for the four primary disorders and our blog).

* We organized 94 brain donations (a new record for BSN), most of which were delivered to the Mayo Clinic in Jacksonville. (Of course the year isn’t quite finished.)

* We hosted our largest-ever “Research Update and Practical Conference on PSP/CBD” in cooperation with the UCSF Memory and Aging Center on October 28, 2017, in San Mateo. Conference video and handouts are available.


This is the time of year when we ask you for assistance.

Five long-time support group members and two long-time BSN benefactors have offered a “challenge grant” to network members. Your charitable contributions through December 31st will be matched up to $8,000. Please help us take advantage of this opportunity and help make possible our efforts for the coming year.

If you mail a check, please write “match” on the memo line along with the name of the family member or friend that you are honoring or remembering. Or, enclose a note with that information. Make checks payable to “Brain Support Network,” and mail to BSN, PO Box 7264, Menlo Park, CA 94026. To count towards the challenge donation, checks should be dated and postmarked by December 31, 2017, Your check does *not* need to be received by this date.

If you make an online contribution (via credit card), please write the name of your family member/friend after selecting “in honor of” or “in memory of.” Please append “/Match” to the name of the person. To count towards the challenge donation, online contributions should be completed by Sunday, December 31, at 11:59pm California time.

Brain Support Network is recognized by the IRS as a 501(c)(3) tax-exempt charity and your donations are deductible to the extent allowed by law. Please know that any amount—$25, $50, $100, $250, $500, or more—is appreciated! Thank you for supporting our three missions!

Happy 2018 to you and your families!

Take care,
Robin (volunteer)
Brain Support Network CEO

“Hands-on Caregiving” – notes from two lectures

Hope everyone is enjoying warm holidays with family and friends.

In November 2017, the National Caregiving Conference was held in Chicago. Many of the sessions were webcast. Brain Support Network volunteer Denise Dagan listened to many of the sessions, including a session titled “hands-on caregiving.”

There were two speakers – Penny Patnaude, who calls herself a “caregiver strategist,” and pastor Bruce Hanson, former caregiver to his wife with diabetes.

The first part of Penny’s talk is aimed at those dealing with behavioral issues in the context of dementia. But the second part of her talk is about general caregiving.

I liked Penny’s suggestions on creating a support network for the caregiver. About friends, family, fellow church members, club members, and neighborhood children, ask yourself: “Who loves reading, playing cards, watching TV, going to museums, puzzles, music, knitting, painting, etc?” Can two people (different days/times) come over 2 hours each week to spend time with your loved one while you get some respite?

Penny introduced the topic of a “caregiver contract.” This is a formal agreement among family members to compensate a family member for providing care. You can read more about this type of contract here:

Denise’s notes about the two lectures are below.


Notes by Denise Dagan, Brain Support Network Volunteer

Hands-on Caregiving with Pastor Bruce Hanson and Penny Patnaude
2017 National Caregiving Conference
November 10, 2017

Penny Patnaude – Caregiver Strategist, LLC

Behavioral Difficulties:
– Wandering can be caused by a feeling of loss, make sure your loved ones receive plenty of exercise, limit caffeine, tea, soda and excessive napping.
– Ask physician for a sedative
– Activities throughout the day
– Paint walls and doors in same color makes finding the exit difficult
– Add pleasant circumstances into the environment (music, pet, fun)

Sundowning Syndrome:
– Use bright lighting in the late afternoon and evenings
– Avoid napping, keep consistent schedules
– Ask doctor for medication (you may have to try several & may not work at all)
– Meet them where they are, don’t argue or discount their hallucination/delusion. Use therapeutic fibbing, which is altering the truth to minimize agitation. Tell them whatever it takes to calm them.
– Distract them
– Add pleasant circumstances
– Avoid agitating topics

Eating Challenges:
– Bite size portions (cut before you serve)
– Finger food
– Ensure, carnation drinks, protein shakes
– Smoothies with pulverized veg & fruits
– Hydrate often
– Large grip utensils & dinner wear (suction cups on the bottom of bowls & plates)
– Ice cream, sweets, soft items easily digestible (non diabetics)
– Salty foods (non high blood pressure)

– Older generation didn’t bathe often when they were young.
– Make the room, clothes & water warm
– Prepare ahead of taking them into the bathroom (clean towels)
– Pleasant aroma
– Talk soothingly
– Use a sitting stool with a slide seat (soap it so they slide into tub easily)
– Let them keep their undergarments on.

– Remove spoiled food
– Remove throw rugs
– Remote cords and cables to prevent tripping
– Keep pathways clear
– Get rid of clutter
– Install gas shut offs
– Use ID tools. Project Lifesavers (GPS). Sheriff’s Dept. may be able to help with this.

Negative feelings (in the caregiver):
– Overwhelmed
– Anger
– Agony
– Stress

Support Tribe:
– Identify skills of loved ones, friends, members of church, clubs and kids.
– Ask yourself, “Who loves reading, playing cards, watching TV, go to museums, puzzles, music, knitting, painting, etc.” Then, enlist those people to do those things with your care recipient.
– Ask for 2 hrs/week from at least 2 people to give yourself some respite.

Caregiver Contract Guide:
– Include the names of all people involved
– What services will be provided by each person
– When will services take place
– What are the service fees
– How often will the charges occur

Caregiver Contract Benefits:
– Can be used to spend down care receiver’s money so they qualify for medicaid.
– Provide financial relief to the caregiver
– Keeps everyone responsible.

To learn more about Caregiver Contracts:

Pastor Bruce Hanson Former caregiver of his wife who has passed away. She was an insulin dependent diabetic when they married. He’s a technical guy so he took care of her diabetes equipment. Over time her diabetes and overall health worsened dramatically. He promised never to put her in a nursing home. He turned their house into a hospital with lifts and other equipment.

Learn what your insurance company will and won’t cover and be prepared to fight to get what they should be covering.

Learn about Medicare and Medicaid. They won’t tell you what they will cover unless you know to ask for it and how.

Learn where to find equipment. This is even more difficult when you live in a rural area, like they did.

Which ambulance service can you use? Which hospital is that insurance company going to take you to? Once you are at one hospital it is nearly impossible to move to another one.

Need some way to keep careful track of all the different doctors, medications, medical history, pharmaceutical history, etc.

Keep together all the information you will need for emergency room visits, and keep it available to travel with the care recipient.

Personally, he stayed out of her personal/private care, but left that to a female caregiver. He helped with lifting and managing her overall care.

Learn how to do all in-home care necessary to prevent having to transfer her to medical facilities whenever possible because of their rural location.

The goal is to provide care in the home so the person needing care is as comfortable as possible. Be persistent and resourceful. Get involved with your state/federal legislative policy. Don’t be faint of heart. Don’t leave a hospitalized care recipient alone at any time. Be their advocate.

“If you can’t get in the front door, try the side door, the back door, the garage door, and if you can’t get into any of them, make a door.”

Sometimes, you make mistakes. You’re only human. The flip side is, if you aren’t there doing everything for them, who would be?

Not a Jolly Holiday? Use this Guide to Find Gratitude

This is a thoughtful article from Family Caregiver Alliance about caregivers not feeling jolly during the winter holidays and some steps they might take to find gratitude.

Here’s a short excerpt: “But no well is bottomless and no caregiver can give in a limitless manner. One can’t always be kind, on-alert, supportive, compassionate, protective, and more, without doing harm to you. In this season of giving, acknowledgment of the giving that goes on all year long can get overlooked.”

The article suggests an easy exercise you can do to focus your actions. This might be a good exercise to do with your family member with a neurological diagnosis, if he/she can participate. It’s best to read the details of the exercise below. It relates to:

* determining which people to connect with
* embracing the season’s activities
* cultivating a sense of goodwill towards yourself and others
* asking yourself “what is doable and what reflects wishful thinking?”

And here are some examples of actions to take this season:

* give the gift of listening
* communicate gently but honestly
* revisit expectations
* cultivate gratitude in your life


Not a Jolly Holiday? Use this Guide to Find Gratitude in the Season
Submitted on Fri, 2015-12-11
Family Caregiver Alliance

Navigating through a jolly holiday season and wishing for a wonderful new year when caring for someone with a chronic, debilitating health condition might have you thinking, “This is no holiday!” But we keep hearing that expressing thanks can lead to a healthier, happier, and less-stressed life. Noted expert Robert Emmons defines gratitude in part as, “… an affirmation of goodness. We affirm that there are good things in the world, gifts and benefits we’ve received. This doesn’t mean that life is perfect; it doesn’t ignore complaints, burdens, and hassles. But when we look at life as a whole, gratitude encourages us to identify some amount of goodness in our life.”

Family caregivers are often portrayed as the epitome of goodness, and rightly so. Time and again spouses, adult children, other relatives, and friends who care for loved ones with Alzheimer’s, stroke, PTSD, TBI, and other health conditions, dig deep to put the needs of another before their own needs. They move personal life priorities to the back burner— work, family, travel, their own health — to ensure the safety and well-being of another person.

But no well is bottomless and no caregiver can give in a limitless manner. One can’t always be kind, on-alert, supportive, compassionate, protective, and more, without doing harm to you. In this season of giving, acknowledgment of the giving that goes on all year long can get overlooked.

As a caregiver, there are ways to cultivate a greater sense of satisfaction coupled with a culture of gratitude for the holidays, both for the person receiving care and for you.

To get a start, try these steps to help focus your actions:

Connect with people.

Holiday time is both about spending time with people we truly enjoy, but also with those to whom we feel obligated. Here’s a very specific exercise to help identify who receives your precious time during this season. Write down the names of family and friends with whom you’re likely to spend significant time this holiday season. Put a (*) by the names with whom you have a relatively simple, uncomplicated, mutually beneficial relationship. Mark an (x) by those people who make you feel uncomfortable (tense, inferior, frustrated, guilty, etc.). Ideally, would you like to spend (1) more, (2) less, or (3) about the same amount of time with each person on your list? Put a 1, 2 or 3 after each name.

Embrace the season’s activities.

We often enter into the holidays wanting to be inclusive and accommodating. Every year family and friends gather to share meals and exchange gifts. Why should this year be any different? Write down all of the activities you look forward to or anticipate doing as part of the holidays. Here are a few to help you get started: Buy gifts, decorate, make travel plans, plan and shop for holiday meals, cook, bake, clean, host guests, host grandchildren, volunteer for charitable causes, participate in spiritual or religious activities, participate in special family traditions (travel to a family gathering out-of-state, make tamales, sing at the local VA nursing home), and more. The list may sound both endless and compelling. Now revisit your list. Put a (*) by the activities that make you smile and feel content. Mark an (x) by the activities that you do not have time to fully enjoy, or that seem to have lost their meaning or become a burden for you, the person you care for, or your family.

Cultivate a sense of goodwill towards yourself and others.

At this time of year there is more pressure to appear happy and joyful. Feeling and expressing your true feelings, especially if these truths appear negative to others, can be discouraged and seen, at the least, as not acting in the spirit of the season. Here are some of the feelings that family caregivers have expressed to us, as well as some from those on the care receiving end of the relationship. See if any of these fit for you: ambivalence, anxiety, anger, boredom, embarrassment, exhaustion, frustration, forgotten, happiness, hopeful, grateful, grief, guilt, impatience, irritability, jealousy, loving, loneliness, loss, peaceful, resentment, sadness, satisfaction, scared, thankful, tired, worried, zapped, and zestful. List any other feeling you know to be true for you. Now put a (1) by the feelings that get in the way or disrupt your life, a (2) by the feelings that just are there but don’t really get in the way, and a (3) by the feelings that you want to cultivate to feel more often.

What is doable and what reflects wishful thinking?

To complete this exercise, draw a line down the middle of a piece of paper. On the left side of the page note your 1s from the first exercise, now write down the (*)s from the second exercise, and add the 3s from the third exercise. List the remaining items on the right side of the page. When you have finished scan your lists. What steps can you take to include more of the people, activities, and feelings from the left side of the page into this holiday season or the near future? What items reflect wishful thinking but more realistically represent something to hope for some time in the future?

Here are few examples of actions to take this season:

Give the gift of listening.

Putting everything else aside to focus your full attention on a loved one. Just be present, listening to them tell you a story or share their thoughts; ask questions about the origin of family stories and rituals, share a chuckle over past adventures.

Communicate gently but honestly.

Tell the person you care for or the person who cares for you, sensitively but honestly, what you need and how you would like to meet that need. It’s better than speaking angrily or resentfully with the person you care for. Sometimes you might just need some time away from the care situation. Try these suggestions for communication with someone living with brain impairment.

Revisit expectations.

If you are caring for a family member living with moderate to severe PTSD or Alzheimer’s disease, making heroic efforts to include your relative in a holiday gatherings can be tense and exhausting. Sometimes it can work wonderfully when family members and friends pitch in so that you can take a break to enjoy yourself. But, too often caregiving tasks and anxiety about actions by the person can drain any enjoyment from your time at the event. Encourage family and friends to spend time with your family member with dementia by visiting the person where they live, rather than at loud, busy family gatherings. A smaller gathering in more familiar surroundings gives visitors and hosts a much greater chance for meaningful time together. Here are more tips for navigating dementia care during the holidays.

Cultivate gratitude in your life.

What would it feel like to focus more of your thoughts on what is good in life? If you have time, consider keeping a gratitude journal, writing down a few items each day. Reading just a few sentences from your journal before you go to bed and when you wake up can help you to focus on the good in your life. As a way to communicate within the family, some people create a “gratitude bowl” where everyone in the household jots down things they are grateful for on a slip of paper and places them in the container. Read a few of the slips out loud each day when you’re together at meal time or post a gratitude note on the refrigerator.

Navigating the holidays on top of all of the other daily activities of life for those living with chronic illness can be fraught with frustration and a sense of disappointment. Giving thought to what is truly important for you and your family, while taking steps to communicate your interests to others can open up opportunities for you to have a less stressful and more satisfying season.

Five technologies for caregivers, including a lock, GPS tracking, and medication dispenser

Five technologies are described in this blog post from today’s “The Caregiver Space” ( See:

The technologies include:

* product called Smart Lock

* Kenguru Car for those in wheelchairs who want to be able to drive

* medication dispenser (specifically one called Hero)

* GPS tracking

* alert device

It might be the early morning hour but I didn’t think the Kenguru Car description was very good.  In any case, it’s probably not applicable to many situations for those in our group.