Daily caregiving balancing act – how much to help?

Brain & Life magazine (brainandlife.org) is published by the American Academy of Neurology.  In the most recent issue, they have a good article on caregiving.  Here’s an excerpt:

“As many caregivers know, offering just the right amount of help can be challenging and stressful for both sides, and requires time and communication. And even after striking the right balance, the needs of the person being cared for may change, requiring caregivers to recalibrate.”

Here’s a “caregiving rule” suggested by a nurse practitioner in the article:

“Dr. Resnick has what she calls a three-time rule: A caregiver allows a patient three tries at a task before stepping in. If the task is putting on a shirt, Dr. Resnick will do one step, perhaps helping the patient put on one sleeve, and then step back. If getting the button secured is the next challenge, she breaks down the action and allows the patient to try again. If the patient is truly not up to a task, Dr. Resnick suggests working together to accomplish it, for example, by placing a patient’s hands over your own as you perform an action.”

Here’s a link to the full article:

www.brainandlife.org/the-magazine/article/app/14/2/20/in-the-balance-knowing-how-much-to-help-is-a

In the Balance
Knowing how much to help is a daily challenge for many caregivers. Our expert advice can help you find that sweet spot.

by Natalie Pompilio
April/May 2018
Brain & Life

Man found joy in completing puzzles that were family photos

This article from last year is about twin daughters who discovered a company that created puzzles from family photographs, and that their father with Lewy body dementia (LBD) really enjoyed putting together these puzzles.

This activity might be of interest to more than those with dementia.

www.brainandlife.org/the-magazine/article/app/13/1/23/puzzle-power-as-lewy-body-dementia-narrowed-their-fathers-world

Fear of the next level of care and the need to stop time traveling – Speaker notes

WellMed Charitable Foundation, based in San Antonio, regularly hosts teleconferences for caregivers, called Caregiver Teleconnection (caregiversos.org).  A recent guest speaker was a professional counselor addressing the topic of hospital discharge planning.

Unfortunately many with neurological conditions end up being hospitalized at some point. The hospitalization and subsequent care can change the course of a person’s life (and of a caregiver’s life).

As always, Brain Support Network’s volunteer Denise Dagan listened to the teleconference and shared her notes. In looking over Denise’s notes, I didn’t find the speaker’s presentation very compelling. However, I was very interested in these three comments made by the speaker at the end of the teleconference in response to questions:

1.  When presented with discharge facility or in-home health agency options, start by using your cell phone or tablet in the hospital during the discharge planning conversation.  Use specific search terms like “Medicare home health coverage.”

2.  Nobody wants to go to the next level of care (either in-home care or any type of facility).  That is primarily due to fear.  If you have a family member in that situation you need to be firm even though it is emotionally difficult.  To ease this transition you can have someone benefiting from that level of care speak with your family member about their personal experience in the level of care you are proposing.

3.  In addition, the patient and family members need to stop ‘time traveling’ (worrying about ‘what ifs’) because your concerns may never come to fruition and in the meantime they are preventing you from living while you focus on your fears.  Do research to allay your fears into what the next level of care might be, how much it could cost, and locations most convenient to you.  Get your VA benefits application process started, if you qualify.  Use behavioral/mental health insurance for some counseling to help manage fears.  Join a support group (both patient and caregiver).

Denise’s complete notes are copied below.  This teleconference was not recorded as there was a substitute speaker.

Robin

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Notes by Denise Dagan, Brain Support Network Volunteer

Working More Effectively with Social Workers: Hospital Discharge Planning to Rehab, Transition Home and Long Term Care
Speaker:  Zanda Hilger, LPC, NCC

WellMed CaregiverSOS Caregiver Teleconnection
April 30, 2018

Social Workers have a master’s degree and, depending on the state are licensed (sometimes clinical, with more training).  You find them in any medical organization, including senior/geriatric clinics, like the intended speaker, Christine Casbeer.  The substitute speaker, Zanda Hilger, recommends connecting with a social worker in a senior/geriatric clinic if you are helping a senior.

When does a social worker step in?  Most caregivers will encounter a social worker in a hospital (not the ER), but after the person has been admitted. Their primary interaction with families is in discharge planning, which is determining if the patient is ready to be discharged into a safe and supportive environment.  In most cases the mindset is that the patient will go home to be cared for by family or to a rehabilitation center from the hospital.

Discharge will be to home (with or without a home health agency) or to a rehabilitation center if there is medical necessity.  There should be an assessment to determine whether the person has medical need after discharge to reduce risk of readmission to the hospital. That assessment is done by the discharge social worker or nurse prior to discharge.  A social worker or nurse will follow up with the patient to ensure the patient and family are aware of community resources to support them after discharge.  When the medical need is no longer required, home health or rehab will be discontinued, but community resources should be in place before medical support is removed.

[Medicare does NOT cover home health for activities of daily living – bathing, dressing, feeding, etc.  Medicare DOES cover home health service for intermittent skilled nursing care (like injections, wound care), physical therapy, speech-language pathology services, occupational services.]

Families should advocate for home health if they feel their family member has medical need or if the hospital is expecting family to perform medical tasks with which the family ill equipped to handle. Advocating for home health ensures their family member is evaluated appropriately for medical need.

Zanda’s experience with her own mother was to accept the hospital’s discharge plan.  The facility the hospital transported Zanda’s mother to was old and not some place she wanted her mother to be placed.  Zanda admits she should have done a visit to the place the hospital was recommending her mother be discharged to and worked with the discharge planner to determine the best location for her mother to be discharged to before the transport happened.  She recommends working closely with the discharge planner, slowing the process, and doing your homework to determine the best place for your family member before the transport happens.

It tends to happen that the family is told discharge will happen at a particular time and the family waits all day.  Then, when the discharge social worker finally shows up they present the couple of facility options and say the decision needs to be made within 2-3 hours.  In that case, the family needs to push back and tell the discharge social worker that it is not possible to evaluate the facility or home health agency options within that time.  If the discharge social worker is inflexible, the family should learn the name of the discharge social worker’s head of department and take your appeal for more time or more information up the chain of command.

The social worker discharge planner’s mandate is to discharge patients from the hospital, but also to ensure the patient is going to a place with enough support to reduce their readmission to the hospital.  The discharge planner’s job and level of information does not include discharge to assisted living or retirement living.  If you want to discharge to that level of care, you need to research those options yourself.  Discharge social workers should not be recommending these for-profit facilities.

To research assisted living or retirement living you might use A Place For Mom or New Life Styles online information.  These resources are paid by the residential facilities they recommend so their lists may be incomplete if all the facilities in your area do not subscribe to their services.  They are both reputable organizations with which to begin your search.

Social workers job is to advocate for your family member’s best care.  If you feel your social worker is not providing enough information or devoting enough time to your situation, be assertive and direct but not aggressive.  Tell them directly that you need more information about X, or say something like, “It seems you are too busy to discuss this now, can we make an appointment to discuss this in depth at ?’o’clock.”  You can also tell your social worker you are not getting enough information or support from them and ask if you can work with their supervisor.  Be kind, not aggressive or angry and you should be able to get what you need from the system.

eldercare.acl.gov – purpose is to help people in the US locate non-profit/government resources like adult day programs, Alzheimer’s disease, behavioral health, caregiver support, elder abuse prevention, financial assistance, food and nutrition, health insurance, healthy aging, home repair and modification, housing options (not for-profit), in-home services, legal assistance, long term care, nursing home and long term care facilities, transportation and volunteerism.

You can use eldercare.acl.gov to check out resources your social worker is recommending or to find resources and run them past your social worker to get their opinion about the usefulness of a particular resource.

Question and Answer:

When presented with discharge facility or in-home health agency options, start by using your cell phone or tablet in the hospital during the discharge planning conversation.  Use specific search terms like “Medicare home health coverage.”

Nobody wants to go to the next level of care (either in-home care or any type of facility).  That is primarily due to fear.  If you have a family member in that situation you need to be firm even though it is emotionally difficult.  To ease this transition you can have someone benefiting from that level of care speak with your family member about their personal experience in the level of care you are proposing.

In addition, the patient and family members need to stop ‘time traveling’ (worrying about ‘what ifs’) because your concerns may never come to fruition and in the meantime they are preventing you from living while you focus on your fears.  Do research to allay your fears, as into what the next level of care might be, how much it could cost, and locations most convenient to you.  Get your VA benefits application process started, if you qualify, also allays fears.  Use behavioral/mental health insurance for some counseling to help manage fears.  Join a support group (both patient and caregiver).

 

“6 Ways to Stop Judging Yourself As a Caregiver”

This recent post to DailyCaring blog of Caring.com lists six ways to stop judging yourself as a caregiver.  The post addresses negative self-talk.

The six ways include:

1. Notice when you’re speaking negatively to yourself.

2. Distract yourself from negative thoughts.

3. Avoid comparing yourself with others.

4. Look at the big picture.

5. Talk to others in similar situations.

6. Keep a success journal.

These six suggestions are described in detail in the blog post.

Robin

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www.caring.com/articles/stop-judging-yourself-as-a-caregiver

6 Ways to Stop Judging Yourself As a Caregiver
You don’t deserve judgment from anyone, even yourself
By DailyCaring, Guest Contributor
Caring.com
Apr 17, 2018

Most of us have run across unpleasant know-it-alls who question your caregiving decisions or criticize things you’ve done. That’s terrible, nobody should speak to you that way!

What’s worse is when we speak to ourselves that way. Many of us unfairly judge ourselves and focus on the few mistakes we’ve made rather than on all the good we’ve done.

What you’re doing deserves praise, especially from yourself.

We’ve got 6 practical tips that stop the unfair self-judgement that happens inside your head. These tips also help retrain your thoughts so you can treat yourself more kindly.

6 ways to stop judging yourself as a caregiver

1. Notice when you’re speaking negatively to yourself

The first step is to notice when you’re talking to yourself negatively about caregiving.

Next time you have a negative thought, take notice and write it down. For example, you might think “I snapped at Mom again today. I’m the worst daughter in the world.” or “Ugh! I forgot to buy more of Dad’s oatmeal. I’m so stupid!”

Even though you’re noticing when these thoughts happen, it’s important not to beat yourself up just for having them. Too often, these thoughts automatically fly through our brains and we hardly notice how harshly we speak to ourselves.

The goal of this exercise is to help you realize that you’re doing it.

2. Distract yourself from negative thoughts

After you’ve been noticing your self-criticism for a little while, it’ll get easier to recognize when you’re being too hard on yourself.

When you realize it’s happening, stop and take a few deep breaths. Redirect your thoughts by thinking about something positive, finding something to praise yourself about, or listing a few things you’re grateful for.

3. Avoid comparing yourself with others

Comparing yourself to other people only makes you feel badly. On top of that, you’re usually comparing your worst moments with their best moments — the ones they openly share with others.

Instead, focus on what you’re doing right. Maybe you found an amazing in-home caregiver who takes great care of your mom. Or, you’ve made sure that your husband is getting excellent care in a wonderful memory care community.

Keep in mind that everyone makes different choices based on their own unique circumstances. This doesn’t make one caregiving decision better than another.

No matter what choices other people make, it’s best to focus on doing the things that work best for your older adult and yourself.

4. Look at the big picture

So what if the house is messy? Who cares if Mom wears PJs all day when she’s at home? Does beating yourself up about these details help the situation? Do these things really matter?

Instead, think about what’s truly important to you. The house might not be spotless, but maybe it’s because you choose to spend quality time chatting and listening to music with Dad to keep him engaged in life and boost his mood.

5. Talk to others in similar situations

Sometimes hearing from others gives you new perspective. Caregiver support groups are a great place to hear stories from other people in similar situations.

You’ll learn about their experiences, the questions on their mind, and their failures. Talking with and getting advice from fellow caregivers helps you realize that you’re not alone in this, everyone is doing their best under difficult circumstances, and there’s no such thing as one right way.

6. Keep a success journal

Recognizing your successes also helps you overcome negative thoughts.

Every day, take a little time to jot down the things you did well. Seeing your wins on paper is proof that you’re successful a lot more often than you might think.

 

“21 Tips for Washing, Grooming and Going to the Bathroom”

Earlier in the year, a post on Parkinson’s News Today (parkinsonsnewstoday.com) offered 21 tips to make washing, grooming and going to the bathroom easier and safer.  Though the blog post is on a Parkinson’s-related website, the tips apply to everyone with mobility issues or those at risk of falling.

Robin

——————————

parkinsonsnewstoday.com/2018/01/15/21-tips-washing-grooming-going-bathroom-parkinsons-disease/

21 Tips for Washing, Grooming and Going to the Bathroom With Parkinson’s Disease
By Wendy Henderson
Parkinson’s News Today
January 15, 2018

As a person’s Parkinson’s disease progresses, simple everyday tasks such as washing, grooming and going to the bathroom can become difficult due to typical Parkinson’s symptoms such as tremors or rigidity. Those living with the disease will be keen to do as much for themselves as possible and retain as much of their independence as they can, particularly when it comes to personal hygiene.

We’ve put together a list of handy tips to help people living with Parkinson’s continue to wash, groom and go to the bathroom easily and safely…

Washing

• Installing at least two fitted handrails near the bath or shower will allow the patient to grab hold of something safe and secure while getting in and out of the bath or shower. These should be professionally fitted if possible to ensure they are strong enough to support the patient’s weight.
• A chair or bench in the shower or bathtub will help those who have trouble balancing while standing. A handheld showerhead is best used in these circumstances.
• Make sure the water isn’t too hot.
• Place non-slip rubber mats in the bath tub and shower cubicle.
• Bath rugs and mats should have a rubber backing so they don’t slide across tiles.
• Liquid soap in a pump dispenser is safer to use than hard bars of soap which can slip out of hands and leave slippery residue underfoot.
• Install a shelf in the shower or bath area that is between knee and shoulder height for easy access to soap, shampoo, and other essential washing items.
• Advise the patient to always take their cell phone or medical alert device into the bathroom if they’re home alone.

Grooming

• Patients should sit down when brushing their teeth, shaving, applying makeup or drying their hair so they don’t have to worry about balance.
• It’s important to support the upper body by resting elbows on the sink or vanity when grooming.
• Electric devices are often better and safer to use than non-electric ones, such as toothbrushes and shavers.
• Hands-free hair dryers can be mounted on a vanity unit.

Going to the bathroom and incontinence

• Toilet frames or grab bars will help patients get up off the toilet safely.
• Introduce a regular schedule for visiting the bathroom, such as every two hours or before meals.
• Avoid drinking caffeinated drinks which may cause more frequent bathroom visits.
• Try to avoid fluids two hours before bed.
• Patients should use a nightlight or keep the bathroom light on during the night so they can make their way to the bathroom safely.
• It’s advised that those with Parkinson’s attempt to fully empty their bladder each time they visit the bathroom.
• If patients become prone to bathroom accidents, they should try using incontinence products such as pads or padded underwear.
• Patients should seek medical advice if they experience burning or a sudden increase in frequency or urgency to urinate as this may indicate a urinary tract infection.
• A urologist can help if patients are experiencing problems with incontinence.
Earlier in the year, a post on Parkinson’s News Today (parkinsonsnewstoday.com) offered 21 tips to make washing, grooming and going to the bathroom easier and safer.  Though the blog post is on a Parkinson’s-related website, the tips apply to everyone with mobility issues or those at risk of falling.

Robin

——————————

parkinsonsnewstoday.com/2018/01/15/21-tips-washing-grooming-going-bathroom-parkinsons-disease/

21 Tips for Washing, Grooming and Going to the Bathroom With Parkinson’s Disease
By Wendy Henderson
Parkinson’s News Today
January 15, 2018

As a person’s Parkinson’s disease progresses, simple everyday tasks such as washing, grooming and going to the bathroom can become difficult due to typical Parkinson’s symptoms such as tremors or rigidity. Those living with the disease will be keen to do as much for themselves as possible and retain as much of their independence as they can, particularly when it comes to personal hygiene.

We’ve put together a list of handy tips to help people living with Parkinson’s continue to wash, groom and go to the bathroom easily and safely…

Washing

• Installing at least two fitted handrails near the bath or shower will allow the patient to grab hold of something safe and secure while getting in and out of the bath or shower. These should be professionally fitted if possible to ensure they are strong enough to support the patient’s weight.
• A chair or bench in the shower or bathtub will help those who have trouble balancing while standing. A handheld showerhead is best used in these circumstances.
• Make sure the water isn’t too hot.
• Place non-slip rubber mats in the bath tub and shower cubicle.
• Bath rugs and mats should have a rubber backing so they don’t slide across tiles.
• Liquid soap in a pump dispenser is safer to use than hard bars of soap which can slip out of hands and leave slippery residue underfoot.
• Install a shelf in the shower or bath area that is between knee and shoulder height for easy access to soap, shampoo, and other essential washing items.
• Advise the patient to always take their cell phone or medical alert device into the bathroom if they’re home alone.

Grooming

• Patients should sit down when brushing their teeth, shaving, applying makeup or drying their hair so they don’t have to worry about balance.
• It’s important to support the upper body by resting elbows on the sink or vanity when grooming.
• Electric devices are often better and safer to use than non-electric ones, such as toothbrushes and shavers.
• Hands-free hair dryers can be mounted on a vanity unit.

Going to the bathroom and incontinence

• Toilet frames or grab bars will help patients get up off the toilet safely.
• Introduce a regular schedule for visiting the bathroom, such as every two hours or before meals.
• Avoid drinking caffeinated drinks which may cause more frequent bathroom visits.
• Try to avoid fluids two hours before bed.
• Patients should use a nightlight or keep the bathroom light on during the night so they can make their way to the bathroom safely.
• It’s advised that those with Parkinson’s attempt to fully empty their bladder each time they visit the bathroom.
• If patients become prone to bathroom accidents, they should try using incontinence products such as pads or padded underwear.
• Patients should seek medical advice if they experience burning or a sudden increase in frequency or urgency to urinate as this may indicate a urinary tract infection.
• A urologist can help if patients are experiencing problems with incontinence.