“11 Signs It Might Be Time for Assisted Living”

This is a good article from Caring.com on the signs it might be time for assisted living or memory care.  The signs are divided into these 11 categories:

1. Big-picture signs

2. Up-close signs

3. Social signs

4. Money signs

5. Driving signs

6. Kitchen signs

7. Around-the-house signs

8. Pet-care and plant-care signs

9. Home-maintenance signs

10. Get help looking for signs

11. Caregivers’ signs

Here’s a link to the article:

www.caring.com/articles/signs-its-time-for-assisted-living

11 Signs It Might Be Time for Assisted Living
By Paula Spencer Scott, Alzheimer’s Caregiving Expert
Last updated: Jul 10, 2017
Caring.com

Robin

“What Happens To A Marriage After Parkinson’s”

This a profile of how one couple’s marriage is affected by Parkinson’s Disease:

Profiles
What Happens To A Marriage After Parkinson’s
Every marriage has its own dynamic, but what happens when a motor system disorder turns that relationship upside down?
by Amy Ridout
Folks: A Pillpack Magazine
May 9, 2017
Robin

“Avoiding Caregiver Isolation” – notes from talk (CaregiverTeleconnection)

Today, CaregiverTeleconnection hosted an audio talk about avoiding caregiver isolation. The speaker, Zanda Hilger, noted obstacles to social interaction for those involved in long-term caregiving. Those obstacles include introversion, not being able to let go of the subject of caregiving, limited funds, limited energy, and limited mobility.

Many suggestions were offered for staying connected, including:

– Don’t ask friends and family if they can visit, ask them when they can visit.

– Try to talk about the issues you deal with in being a caregiver with your support group, clergy, counselors, social workers, medical staff, etc. so you don’t burden friends and family whom you want to visit your care receiver on a social level, so you don’t drive visitors away. Try a few support groups to find the one that actually supports you.

– Be sure to arrange respite care for yourself. Get away for 15 minutes, an hour, a 1/2 day, full day, or longer to get away from caregiving and relax. Keep a list of relaxing things you can do in those periods of time. Do them when you have a short break, and take time to arrange activities for longer breaks. Limit your conversation during a respite break to non-caregiving topics.

– Do activities through your local senior center or church, like Bingo, movies, daily lunch, or just to socialize. Volunteer with your church, community organization, kids/grandkids’ school, food pantry, etc.

– Invite people (family, friends, neighbors, support group members, church members, etc.) over for pot luck, dessert, cocktails and/or hors d’oeuvres, etc. Use disposable dinnerware and utensils, buy the food and drinks already prepared. Keep it simple.

CaregiverTeleconnection is a service offered by WellMed, a charity based in San Antonio. These are one-hour conference calls on topics of interest to caregivers and family members. You can find information on these conference calls at caregiverteleconnection.org.

Note that unlike some other Caregiver Teleconnection talks, this one was not recorded.

Fortunately, Brain Support Network volunteer Denise Dagan listened to the talk and took some notes. See below.

Robin

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Denise’s Notes from

Avoiding Caregiver Isolation
Speaker: Zanda Hilger, LPC
Caregiver Teleconnection
July 10, 2017

Family caregivers are usually caring for someone they love and will often do more than they have physical, financial and emotional resources for. Statistics show that caregivers sometimes die before their care receiver due to neglecting their own self care. This is why there is so much focus on educating caregivers about self care.

Respite is, by definition, reducing stress by taking a break from caregiving. Avoiding social isolation / maintaining social connections is a primary way to engage in respite from caregiving, but it is made more difficult by some common experiences:
– Introversion (either care receiver, caregiver, or both)
– Social awkwardness (not knowing what to say when someone is ill, especially if you cannot relate to the experience of being ill or being a caregiver)
– Not being able to let go of the subject of caregiving (tends to drive people away because they feel helpless)
– Limited funds
– Limited energy
– Limited mobility

 

Some suggestions for staying connected or getting connected:

Don’t ask friends and family if they can visit, ask them when they can visit.

Any sort of outing you find within your time, budget, energy and stress level is beneficial for both you and your care receiver. Even the same restaurant with a supportive, friendly staff every day gets you out of the same four walls and connecting with the world.

Reach out to people you have lost touch with and understand they may just not know what to say. Talk about that openly and help them find things to talk about with your care receiver. Give them a brief update on the care receiver’s situation, then change the topic to ask them about themselves. Bring up issues of the day or tell them something about yourself you have not shared with them before and ask them about things they may not have shared with you.

Try to talk about the issues you deal with in being a caregiver with your support group, clergy, counselors, social workers, medical staff, etc. so you don’t burden friends and family whom you want to visit your care receiver on a social level, so you don’t drive visitors away. Try a few support groups to find the one that actually supports you.

If you are looking for visitors, be clear that you are not recruiting help with chores or errands.

Look for old friends or fellow caregivers via the internet through direct search terms (Parkinson’s disease, people’s names, etc.), use (or learn to use) facebook.

Be sure to arrange respite care for yourself.
– Get away for 15 minutes, an hour, a 1/2 day, full day, or longer to get away from caregiving and relax. Keep a list of relaxing things you can do in those periods of time. Do them when you have a short break, and take time to arrange activities for longer breaks. [Put them on strips of paper in a jar and draw one if you can’t decide which to choose or for a sense of adventure.] – Limit your conversation during a respite break to non-caregiving topics.
– Respite grants are available through your Local Area Agency on Aging and can be paid to whomever you trust to care for your care receiver. Find yours at www.4a.org

Take a class through your local city recreation department, senior center, or junior college.

Do activities through your local senior center or church, like Bingo, movies, daily lunch, or just to socialize.

Volunteer with your church, community organization, kids/grandkids’ school, food pantry, etc. Offer to host or teach an activity yourself at any of the organizations / venues listed here.

Join a group through Meetup.com which connects people interested in any type of activity like cooking, book clubs, crafting, exercise, art, dance, museum/history outings, birding, etc. There is no commitment or fee, like joining a class.

Invite people (family, friends, neighbors, support group members, church members, etc.) over for pot luck, dessert, cocktails and/or hors d’oeuvres, etc. Use disposable dinnerware and utensils, buy the food & drinks already prepared. Keep it simple.

Become a regular at a coffee shop, local park, diner or fast food place and talk with people there just to make connections with others, even if you never see them again.

Stay connected to the world, especially through positive news. The Huffington Post has started an initiative focused on covering positive news. www.huffingtonpost.com/topic/good-news-highlights Just skip past all the animals stories. There’s more in there!

Use snail mail. Send cards to connect with others just to say you’re thinking about them and see if they will write back.

Text with others throughout the day.

Remember this intense caregiver experience is temporary.

Maintain your confidence. You are not just someone who is a caregiver. You have value and skills, accomplishments, preferences and opinions about TV, music, news, art, and experiences to share with the world. Draw on your history to have something to talk about with others outside your caregiving experience.

Journal, take yourself to coffee with a good book or a movie, try something you haven’t tried, take a nap, take a stroll, join a walking group at a mall (for unpleasant weather)

Familycaregiversonline.net has education modules, resources, FAQ, respite ideas, stress relief, financial/legal issues.

 

Question & Answer:

Introverted people have a hard time socializing. Its a difficult situation if the caregiver is introverted and the care receiver is outgoing. The caregiver is under more stress to get the care receiver out of the house and staying connected in ways they would like to because the caregiver finds socializing itself stressful.

Coordinate with your support group members to be a social group/respite time for each other. Make a pact there will be no caregiving talk at all, or after the first 15-30 minutes, during social/respite get togethers.

 

“The Pain of Caregiving” (essay in STAT)

This essay by Judith Graham is about seeing loved ones in pain.  Here are a few excerpts:

“What does a caregiver do in these circumstances, when someone you care for is in extremis?  If you’re scared as hell — a natural response — you go quiet, maybe leave the room. If you stay, you try not to minimize their agony. It’s their right to have it acknowledged.  So, maybe you say, ‘I’m here. I’m with you. I’m staying with you. I’m not going away.’  Or maybe just ‘there, there,’ as you would to a child. Or, ‘Hang on. We’re going to get you help’ — if you think help is available.”

“[My] sister in the early stages of frontotemporal dementia…called me often, asking, ‘Why is this happening to me? Why?’  I didn’t have an answer. I didn’t know what to say.  Why does devastating illness strike some and not others? Is there an adequate response to this existential cry of anguish from someone you love?  To me, this was worse than the physical pain I witnessed earlier in life.”

“For me, a sense of profound isolation eased when I came upon an essay by author Ken Wilber, ‘On Being A Support Person.’ In it, Wilber describes grappling with powerful negative feelings as he cared for his wife, Treya, who had cancer.  Anger. Irritation. Frustration. A desire to run away. An impulse to lash out. The torment of helplessness.  It took Wilber years to understand that his responses were a distraction — a way of avoiding Treya’s fear and sadness as well as his own. … Eventually, he realized the only way forward was to accept the vulnerability, the anguish, and the dread. ‘Your job is to hold the loved one, be with her/him, and simply absorb as many of those emotions as you can.'”

Here’s a link to the full essay:

www.statnews.com/2017/05/12/the-pain-of-caregiving/

FIRST OPINION
I didn’t want to witness the anguish of loved ones in unbearable pain. But how could I not?
By Judith Graham
May 12, 2017
STAT
Robin