In response to the covid-19 outbreak and shelter-in-place orders, the UCSF Memory and Aging Center (MAC) is hosting a weekly caregiving webinar series. These webinars are focused on providing information and resources to caregivers spending more time at home with their loved one and less caregiving support than usual.
Thanks to Brain Support Network local support group member Helen Medsger for alerting us to this caregiving webinar series.
Webinars are presented every Wednesday from noon to 1pm (CA time). Check out the schedule (memory.ucsf.edu/covid) of upcoming topics, register for upcoming webinars, and view recorded past webinars in the series.
The first topic presented on April 1st was “Having a Back-Up Plan – What if You Get Sick?” Two terrific RNs at the MAC were speakers — Jennifer Merrilees, RN, PhD and Nhat Bui, RN, NP.
The recording of the April 1st webinar is here:
Reviewing the webinar recording or reading the notes below is a must for all caregivers at this time! It is always a good idea to have a back-up plan because it is always a possibility that a caregiver may become ill, injured, or otherwise unable to provide care. The covid-19 pandemic brings some urgency to the issue of creating or reviewing your back-up plan. The speakers make the point that a back-up plan should include information about end-of-life care preferences.
Thanks to Brain Support Network staff member Denise Dagan for attending the webinar, and sharing her notes. Denise says:
This webinar walks caregivers through who should be your back-up person (or people) and what information they will need to step into your shoes. In addition, it provides links to several resources to help caregivers:
- Identify community caregiver support (volunteers, in-home care services, etc.)
- Create a personal care plan (printable worksheet)
- Have a difficult conversation about end-of-life wishes
- Complete an advance directive
- Stay socially connected
- Keep up to date about covid-19
See Denise’s notes below.
Having a Back-Up Plan in Place – What if You Get Sick?
Webinar hosted by UCSF Memory and Aging Center
April 1, 2020
Presenters: Jennifer Merrilees, RN, PhD and Nhat Bui, RN, NP
Notes by Denise Dagan
What is a back-up plan?
A back-up plan:
- Is a way to be prepared for meeting your loved one’s needs in the event you, the caregiver, gets sick and cannot manage caregiving responsibilities.
- Ideally, you’ll never need a back-up plan, yet it may offer you peace of mind to know you’ve got one.
- Major considerations include WHO could care for your loved one and WHAT is needed to ensure a smooth transition in care.
Think about the people/resources you rely on for support.
* Ideas may include a family member, friend, neighbor, clergy, or a member of your support group whom you’ve grown close to. These people may be providing emotional connection, advice/problem solving, hands-on care, meals or errands. Due to covid-19 these support people may not currently be available. Day programs are closed, you may have asked in-home caregivers to suspend visits
* The Alzheimer’s Association 24/7 Helpline (800-272-3900)
* Your health care provider, a case manager, social worker or nurse
* A counselor or therapist
Make a list of people you can call on if you need assistance:
– This can be family, friends, neighbors, clergy, or members of your support group. It’s important to ensure that the person or people that are on your back-up list know that you may call upon them to help. Ensure everyone understands just what type of back-up they may be asked to provide
– Consider what decisions you should make ahead of time:
- Will help come to you or will you go to them?
- Consider community resources. Most are still running during covid-19.
- Consider hiring an in-home care aid or placing your loved one in a care facility. Care facilities have new rules during covid-19 both for accepting new residents and permitting visitation.
– Community and Aging Resources:
- Volunteer help: aarpcommunityconnections.org/
- Help from your local Caregiver Resource Center (in California — organized by county): caregiver.org/californias-caregiver-resource-centers
- Paid help through a home care agency or memory care facility. Alzheimer’s Association online community resource finder: communityresourcefinder.org
Keep your health care provider informed:
- Connect early with your and your loved one’s health care provider. There may be delays in hearing back so contact them early and often. They may be able to help you problem solve and/or create a back up plan with you
- Keep them apprised of your needs and your back-up plan
- Discuss protocols for covid-19 screening
Things to have on hand that pertain to the person you care for:
(Gather in one visible, accessible place documents and information your back-up person/people will need)
– Health insurance card(s)
– List of current medical conditions, medications, allergies
– Contact information for key people involved in your loved one’s care (health care provider, family members, friends, neighbors)
– Healthcare advance directives (documents that spell out a patient’s wishes for end-of-life care)
A care plan:
A care plan allows you to write down important aspects of care. For example, how the person communicates their needs and express emotions; what a typical day is like (bedtime, preferred activities), and tips for successful care.
You can write a care plan in any way you like, as long as it is organized and easy for your back up person/people to find and read. A sample worksheet is available at:
Have needed supplies organized and readily available: Suggestions include —
- Several days supply of medications (some experts recommend a 90-day supply) for both yourself and your career
- Change(s) of clothing and toiletries
- Needed supplies such as incontinence briefs, wipes, hearing aid batteries, denture cleaner and/or adhesive, glasses, etc.
- Comforting objects, activities, and/or music player with earphones
- Preferred snacks
- A note on the outside of the emergency bag to remind you to include a cell phone and charger
– A way to document end-of-life decisions and your values about your loved one’s care and their values about their own care. If you have one, find it and renew it. It’s OK if you can’t sign one or get it witnessed now. Reading it and discussing it to have a plan in place can still be helpful.
– The Conversation Project (theconversationproject.org). Facilitates difficult conversations. Walks you through issues to consider and how to put preferences for end-of-life care in place.
– Share your notes by scanning, faxing, emailing, or sending pictures of the document to the people that you trust and your healthcare provider.
– Resources to help you prepare an advance directive (updated for covid-19):
- Prepare For Your Care: prepareforyourcare.org/advance
- Areas on Aging in Santa Clara County: mysourcewise.com
- Consumer Advocates for Nursing Home Reform (CANHR): canhr.org
If you get sick:
If your symptoms are mild and you can stay home:
- Alter your expectations fro your loved one’s care. If they stay in their PJs all day, don’t get bathed daily or watch more TV than typical, that’s okay>
- Most important thing is to ensure safety in your home. If the person you care for is at risk for wandering, keep doors bolted. Keep a current photo of them. Consider enrolling them in the Safe Return program through the Alzheimer’s Association. If your loved one is unsafe in the kitchen, disable the appliances.
- Put activities into place that require the least amount of effort by you. Have activities set up where your loved one usually sits. Remote control devices for television and music
If your symptoms are more severe and you need care:
- Ask your back-up person to assume care of your loved one
- Notify your healthcare provider and your loved one’s healthcare provider
- Call 911 or go to your emergency room for emergencies
- If you need to go to the hospital or emergency room and there is no one to care for your loved one, bring them with you. Explain that you are their caregiver.
Resources for staying connected:
- Alzheimer’s Association 24/7 Helpline – 800-272-3900)
- California resources:
- Covia: online and phone support and activities: covia.org/services/well-connected/ or 877-797-7299
- Institute on Aging 24-hour Friendship Line: Serves Bay Area counties 800-971-0016 or 415-750-4111
Resources for staying informed about covid-19:
- Centers for Disease Control: https://www.cdd.gov
- U.S. Department of Health and Human Services: https://www.hhs.gov
- This webinar will be posted on the UCSF Memory and Aging website and we will include copies of the documents discussed today.
Subsequent webinars in this series will go into more detail about obtaining supplies, protect your health as a caregiver, etc.
Question & Answer
Q. For those with family members who don’t live nearby, what if remote back up plan people cannot mobilize to help?
A. Think more broadly about people in the area who wouldn’t have to travel and who could be part of a second tier back up plan. Perhaps you can investigate a local in-home care agency you can employ?
Q. Can Adult Protective Services be a resource?
A. Anecdotally, caregivers who have reached out to county CPS out of concern that they would not be able to provide adequate care for their loved one. In more normal times, CPS has been helpful in directing families toward community resources to make individual care situations safer. If you feel there is nobody to help you and you need to be hospitalized, CPS may be the only resource who can effectively step in to monitor the situation and put care in place for your loved one’s safety. Obviously, it is not ideal, or should it be your first step, but it is a resource. You can even reach out to local law enforcement if your situation is entirely unsafe.
Q. Husband has Alzheimer’s and caregiver has asthma. In-home care are washing hands, disinfecting, etc. What else can they do to protect their health?
A. You should still continue to have in-home care. You are doing just the right things. Gloves, masks, gowns too, if they are available. Be sure to tell caregivers not to come if they are feeling at all unwell. Ensure you have enough medications in stock. This wife should also connect with her healthcare team to develop a plan for her care and prevention of her becoming ill. She should talk with them about what her care plan is and what she should do if she does become ill. This can take longer than it did before the covid-19 outbreak so call soon. You may be directed to a tele-health appointment or just a phone call for these non-urgent matters.
Q. How can caregivers address mood symptoms, mental health suffering, anger, aggression, etc. especially during shelter in place?
A. Everyone feels more anxiety, worry, anger, frustration because our routines have shifted. Disruption of routing is especially hard on people with dementia. We are all trying to stay informed, but the news provokes anxiety so consider turning off the news. Put on music or positive message TV and movies. If the caregiver’s emotions are running high, those are cues that provoke higher level of emotions in care recipients. Consider calming yourself to calm your entire household.
Next week this webinar series will present suggestions for keeping active, distracted, etc. Can you identify a pattern to the mood changes. Is there a triggering event, like the news or end of the day (sundowning). Change what you can to prevent those mood changes from happening.
Q. Caregiver not able to take Mom out to enjoy sunshine. How to minimize risk and still get out.
A. Exercise is still an essential activity so it is permitted. The restriction is to stay six feet from others. This can be difficult to abide by with someone who has memory loss. Perhaps hold hands and distract them from moving too close to others. Consider wearing a mask if you must pass other more closely. Consider going for a car ride, just to get out. Perhaps take a picnic to share in the safety of your car. There are live broadcasted and online archived exercise classes, like yoga, tai chi, chair aerobics, etc.
Q. Husband doesn’t remember to social distance if we go out for a walk. Driving gets us out, but doesn’t get him exercise.
A. Consider going out when there are not many others out? Early morning walk or take a less frequented route? If you and your care recipient wear a mask and others around them are, it can be a reminder about social distancing.
Q. Grocery stores social distancing doesn’t work for those with dementia who don’t remember to social distance.
A. You don’t have to shop just during the early morning senior shopping hours. Shop late in the day or consider having your groceries delivered. It may be good for you to get out and shop, so ask a friend or relative to keep an eye on the person you care for.
Q. At what point do you recommend calling for help if the person you are caring for is becoming aggressive.
A. Can you identify and modify triggers of aggression? Stay in touch with your medical team so they are aware of the situation. They may be able to help problem solve the situation. Ask how you might manage this behavior. Consider medications. Give the medical team feedback as to how their recommendations are working. The Alzheimer’s Association Helpline may be able to help de-escalate the situation.
Q. Spouse recently unable to walk unaided so need in-home care. How safe is it to have in-home caregivers coming in?
A. Hire from an agency which employs those certified in safe care practices. Always ask the healthcare providers directly to NOT come to work if they feel at all well (cough, exposed to someone who’s ill, traveled to exposed area, fever). If this person’s care needs have recently changed dramatically, there is some care education that can be useful to this caregiver with respect to learning how to look after someone who is now bed bound. There are many online videos so the caregiver can learn about safe positioning during eating, in-bed bathing, repositioning in bed, toileting, transfers, etc. so the caregiver doesn’t hurt themselves doing these tasks. A referral to home care may be appropriate, too. That would bring a nurse and other resources to the home to teach the family caregiver these tasks and what equipment will be helpful to have in the home henceforth.
Q. What information is helpful to share with people who need specific information to provide the best care possible?
A. A personal healthcare plan is a roadmap to provide the best care possible for someone. It is especially useful in a transition of care from the primary caregiver to in-home care or a residential care facility. This would be the best thing to have in place at this time – just in case the primary caregiver becomes ill, so your back up plan person/people can step in seamlessly.
Q. For those who have not completed an advance directive and the person with dementia can no longer make decisions, what to do now?
A. Don’t panic if you don’t have an advance directive. It is still important to write down what you know about the wishes of the person you care. There are templates and forms you can use, as mentioned in this talk, but it can just be handwritten and doesn’t need to be signed and witnessed. These documents are guidelines so care of an individual align as closely as possible to the person’s wishes. Most healthcare services are willing to take your notes into account.
If you have an advance directive, now is a good time to update it. These documents can always be updated as new information is learned so write down what you know now and share it with other family members and medical team. Many times people don’t remember if they have ever made an advance directive. Contact your clinic to see if one is on file. If not, look around the house, safety deposit boxes, etc. If you don’t find one, jot down what you know and share it with the medical team.
Q. What about a personal healthcare plan for caregivers? Are there any recommendations that should be included to reduce risk of contracting covid, other than social distancing, hand washing, etc.
A. There is a lot of research into treatments and creating a vaccine for covid, but there are no known supplements, medications to prevent or treat this disease. That is why we are relying on the public healthcare measures. If you have a chronic condition, like diabetes or high blood pressure, etc. the best plan is managing those conditions as well as possible for your best health in the short and long term.
Q. How do you find a professional to step in to care for your loved one?
A. Start with in-home care agencies in your area. The caregivers will be screened and well trained. A case manager or social worker can help you assess your needs and put you in touch with an in-home care agency.
Q. Advice for a wandering person who will remove a medic-alert bracelet?
A. Sometimes, you can secure those bracelets in a way that is hard to remove. If caregivers also wear a medic-alert bracelet, you can gain cooperation in keeping it on. There are electronic devices you can employ. The Alzheimer’s Helpline has many suggestions for keeping ID on your loved one. Let your local police department know about your loved one and provide them with a good photo. Be sure they have a wallet or purse with ID or keep a note with their ID in their shoe or a pocket each morning. You can regularly dress them in colorful clothing, take a photo of them each day to show what they are wearing for those who may be looking for them later in the day if they should wander off.
Brief summary of recommendations – essentially, who might help you and what will they need to step into your shoes.
- Identify your back up person/or people.
- Ensure those people know you may call upon them.
- Ensure those people know what they may be asked to do.
- Think about who can be your second tier back up people – extended family member, neighbor, etc.
- Gather information your back up person/people will need for your care receiver’s best care.
- Make sure your back up person/people know where to find this information:
- Personal care plan.
- Insurance cards
- Advance directive
- List of current medications, dosages and times
- Contacts involved with the person’s care (doctors, pharmacy, family, neighbors, clergy)
For upcoming and recorded webinars in this series: memory.UCSF.edu/covid