Care Partner Corner
**Caregivers, don’t be too hard on yourselves; caregiving for another is a process with a steep learning curve for some of us. We weren’t trained for this.
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2025
1. Zoom SHARING GROUP MEETINGS FOR CARE PARTNERS ONLY
Besides our monthly meetings with a speaker, we are still offering an opportunity via Zoom for the Care Partners to share with others. It is a meeting open specifically for care partners. Below is information you need to enter the Zoom meeting. For each month of 2024, the link noted below is the same. We suggest you save that link.
Caring Partner Zoom: 3rd Wed. of the month, and all meetings are at 2:00 p.m.
Join Zoom Meeting with Link below . (Copy and paste the Zoom code below or double click on the link to join the meeting.)
https://us02web.zoom.us/j/85758888263?pwd=uYHNykPg6DYUmfJPwPuGjkVYZ9GzS0.1
2. HABITS THAT MAY AFFECT YOUR SELF WORTH AS A CARE PARTNER
a. Comparing yourself to others Remember, you are unique
b. Assuming others think less of how you caregive Usually other people are
too busy themselves to critique your caregiving skills.
c. Overestimating what you think you can accomplish in a given time You
need to give yourself a break and applaud what you do accomplish, even
the smallest.
d. Judging yourself by the worse thing you've ever done. Now is the time to
remind yourself of all the good you've done...big and small.
3. HOW TO GATHER MORE PEACE IN YOUR LIFE Sections I-III
Section I. (from Dr. Peter Cuomo, Neuropsychologist)
-Be patient—wait for the person to respond. After a few minutes, you might ask in a different way, with simpler phrasing, or even with pauses between your phrases giving the person a chance to take in the idea. Complex ideas are difficult for the PD patient.
-Give prompts, cues, reminders. Add a large calendar to the refrigerator, hang signage noting each day of the week on the knob of a cupboard or drawer, ask questions.
-Simplify choices or options. Offer no more than 2 options at times. Or even ask "yes" or "no" questions. "Do you want ham for dinner?" "Do you want to go for a walk?"
-Avoid confrontation. This is not easy. If the conversation escalates, try shifting topics. Then forgive yourself for losing control. You are only human. You might consider the following: CAR
C No correcting
A No arguing
R No reasoning
*CAR is not easy, but with practice, you might find some peace you hadn't had before. But remember perfection is not the goal; just do your best.
-Reminding the patient of what he should do, such as "stand up straight, swallow more", etc, sounds helpful, but more peace on both sides could be had if the care partner did not nag, even with the best intentions. It is hard not to, but just let it go. It's a responsibility the care partner does not have to carry.
Section II (from Parkinson’s Disease 300 Tips by Shelley Schwarz)
Be encouraging: Whether it’s getting the person with Parkinson (PWP) to exercise, eat, dress or do any other activity, have a positive, patient and encouraging attitude. Allow the PWP to do as much for herself/himself as possible. Squelch the tendency to jump up and do a task because you do it faster and more efficiently. (p.7)
Section III
(from An Unlikely Gift, by Nancy Alexander and other handouts)
1. Meet your PWP where they are. It is not easy. “We don’t want to see them there. They don’t want to be there. But that is where they are. We must stop forcing what we so desperately want, some semblance of normalcy, on them.” Normalcy is no longer an option. (p. 55)
2 Routines are important whenever possible. “The more you can keep things the same, with the same routine, the better for” both PWP and the care partner. (pp. 57-58)
3. “Talk slowly and calmly” using a simple one-direction-at-a-time method. Too much information too quickly is overwhelming.” A PWP needs more time to process. Also, speaking more calmly decreases anxiety. (pp. 58-59)
4. Also, click on the links below (in gold); then click on the link (in blue) after the phrase "Go to file" to download the handouts on "Caregivers and Guilt". and "Caregiver Hints".
Free-Yourself-Dont-Get-Tripped-Up-with-Caregiver-Guilt-Handout.pdf
Green_sheets_suggestions.docx NEW
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4. Possible Sources for In-The-Home Support
* You might wish to contact one or more of the following.
NEW AARP sources: Following sources from AARP might be helpful
Facebook caregiver group: facebook.com/groups/aarpfamilycaregivers.
Caregiver guides, federal & national resources, self-care: aarp.org/prepareto care.
Location of NY services and agencies: aarp.org/caregiverresourceguides.
Home Health Aid
Home Care Assistance
Adult Day Care
Office of the Aging
Nursing Students from MCC or FLCC
Comfort Care Companion
Care.com
Medicare with PT, OT, who come to the house
“Next Door” On-line
Hospice would send aids when needed
Comfort Keepers
Hospice
5. Mental Health Care for Patients and Care givers presented by Rev. Dr. Richard McCaughey 6/26/2024
Mental health care begins not with professional help but with caring for ourselves and others in effective ways. The following is largely a prescription for how to do that.
SELF-AWARENESS:
- You can’t effectively treat an illness or disease without a diagnosis.
- Self-awareness is an open, honest, non-judgmental and self-compassionate understanding of what is going on with you (mentally, emotionally and spiritually), when it is going on and why.
- Self- awareness requires self-acceptance, that is, an acceptance of who you are at the moment regardless of all the goals you may have for improvement of yourself. There is little room for ego driven needs in this process.
- Seeing as how we are dumbest about ourselves, it is advisable to invite input about yourself from people you know care about you, whom you can trust, and whose judgement you respect.
EMOTIONS:
- You are like an iceberg. The tip above the surface represents your rational consciousness. The great mass below the surface represents your emotional sub-consciousness.
- The sub-conscious mind largely uses emotions to communicate with the conscious mind.
- The way to “listen” to your emotions is to feel them until you have conscious awareness of their meaning and origins. Once awareness comes, the emotions themselves often subside or disappear because they have succeeded in communicating.
- People are often afraid of their emotions because they are afraid of losing control, or afraid of their emotions undoing them somehow and causing harm. Your emotions do not try to harm you; they try to get a message through.
- You have no conscious control of your emotions. You can freely feel your emotions if you are confident of controlling your actions and staying in charge of your thinking.
- Emotions are neither right or wrong, good nor bad. They are value neutral messengers from the sub-conscious to the conscious mind.
- Two primary difficult emotions: pain and fear. Anger and depression are means of coping with these emotions: anger to act on pain or fear, depression to mute pain or fear.
- Worry is fearful thinking about an imagined negative experience in the future. Worry does not help; you practice it to give yourself the illusion of control over the future. The antidote to worry is confidence and trust.
THINKING:
- Much of our stress and emotional suffering come from the way we think. The thoughts that cause us stress are usually negative, unrealistic and distorted.
- “Your worst enemy cannot harm you as much as your own unguarded thoughts.” (Buddha)
- You can choose to think whatever you want. You can exercise control over your thinking.
- The problem is habitual, automatic thinking that we exercise without critical judgment.
- Questions to ask yourself to challenge automatic thinking:
When did I learn this thought?
Is this a logical thought?
Is this thought true?
RELAXATION AND MEDITATION:
- Even when you cannot control the situation, you can control your breathing. The breath is the bridge between the body and the mind, the conscious and the sub-consciousness mind, the sympathetic and the para-sympathetic nervous systems.
- Meditation is any activity that keeps your attention focused in the present.
- Relaxation formula: Stop—Breathe—Reflect—Choose
SPIRITUALITY:
- There are two needs that are hard wired into each human being that are just as vital to our thriving and surviving as air and nutrition: meaning/purpose and belonging/connection. This is what spirituality is all about.
- We build our lives from the time of birth in ways that will meet these two needs.
- Because life moves and changes, we regularly have to tweak our spiritual construction.
- From time to time the whole construction of meaning/purpose and belonging/connection is so badly shaken that we experience spiritual crisis.
- The experience(s) of spiritual crisis is dark, scary, messy and lonely.. Herein we embark on a wilderness journey between “no longer and not yet”.
- Hopefully this journey leads us eventually to transformation.
- Medical crisis often leads to spiritual crisis because our world has been severely altered.
- Presence (listening, caring, empathy – not fixing) is the greatest way to help.
HUMOR:
- Children laugh up to 300 times a day; Adults laugh only 15-17 times a day. What happened to us?
- Benefits of humor
Decreased stress hormones Elicits the relaxation response
Increased blood flow Increases pain tolerance
Enhanced memory and learning Lessens the fear of death
Decreases depression, anger and perceived stress
- Why we don’t laugh (Marilyn Meberg)
We aren’t heard. We aren’t content.
We aren’t real.
PD AND MOOD:
- Chronic mood disorders related to a progressive reduction of dopamine:
pessimism, dysphoria (unwell/unhappy), sadness, suicidal thoughts
- Therapies:
Psychotherapy (esp. cognitive behavioral therapy)
Brain stimulation
Exercise
Social support