“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.

 

Inheritability of PSP

This is an interesting, short question-and-answer on the Genetic and Rare Diseases Information Center (part of NIH) about the inheritability of progressive supranuclear palsy (PSP), from September 2012.

Robin

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rarediseases.info.nih.gov/diseases/7471/progressive-supranuclear-palsy/cases/36421

Progressive supranuclear palsy
Genetics and Rare Diseases Information Center (part of NIH)
Last updated 9/12/2012

Question: My identical twin sister has been diagnosed with progressive supranuclear palsy (PSP). As it seems this disease may have a genetic cause, what is the chance that I would also develop PSP? And within what timeframe?

 

Answer: The following information may help to address your question:

What is the chance of developing progressive supranuclear palsy if a relative is affected?

Researchers do not yet completely understand the causes of progressive supranuclear palsy (PSP), so it is not possible to predict the chance of a relative developing the condition if one family member has been diagnosed. Most of the time, only one person in a family develops PSP. It is not very common to have multiple members of a family develop PSP. One study found that 7% of individuals with PSP had a family history of potentially related conditions (including dementia or parkinsonism), which suggests there may be a shared genetic risk factor.[1][2]

A few genetic risk factors (particularly a gene called MAPT) are known to play a role in the development of PSP.[3][4] However, these genetic risk factors have only been found in a few families. Researchers suspect that there are other genetic factors that haven’t been found yet that also contribute to progressive supranuclear palsy.

 

If a family member has a known genetic risk factor for progressive supranuclear palsy, what is the chance a relative has inherited it?

Close relatives such as parents, siblings, and children of an affected individual have a greater chance of sharing a genetic predisposition than do aunts, uncles, grandparents or cousins. Identical twins share their entire DNA, so they should have the same genetic risk factors.

 

If an individual inherited a known risk factor, what is the chance of developing progressive supranuclear palsy?

Having a genetic risk factor increases the chance of developing progressive supranuclear palsy (PSP); it does not guarantee that an individual will develop this disease at some point in their lifetime. The exact risk of developing PSP in an individual with a genetic predisposition is currently unknown.[5]

 

What is the average age at diagnosis for progressive supranuclear palsy?

Individuals with progressive supranuclear palsy usually experience the first symptoms of this disease while in their 60s.[1]

 

We hope this information is helpful. We strongly recommend you discuss this information with your doctor. If you still have questions, please contact us.

Warm regards,
GARD Information Specialist

 

References
1. Progressive supranuclear palsy. Genetics Home Reference. March 2011; http://ghr.nlm.nih.gov/condition/progressive-supranuclear-palsy. Accessed 9/7/2012.

2. Donker Kaat L, Boon AJ, Azmani A, Kamphorst W, Breteler MM, Anar B, Heutink P, van Swieten JC. Familial aggregation of parkinsonism in progressive supranuclear palsy. Neurology. 2009; 73:98-105. http://www.ncbi.nlm.nih.gov/pubmed/19458322. Accessed 9/12/2012.

3. Rojo A, Pernaute RS, Fontán A, Ruíz PG, Honnorat J, Lynch T, Chin S, Gonzalo I, Rábano A, Martínez A, Daniel S, Pramstaller P, Morris H, Wood N, Lees A, Tabernero C, Nyggard T, Jackson AC, Hanson A, de Yébenes JG. Clinical genetics of familial progressive supranuclear palsy. Brain. 1999; 122:1233-1245. http://www.ncbi.nlm.nih.gov/pubmed/10388790. Accessed 9/6/2012.

4. Dickson DW, Rademakers R, Hutton ML. Progressive supranuclear palsy: pathology and genetics. Brain Pathology. 2007; 17:74-82. http://www.ncbi.nlm.nih.gov/pubmed/17493041. Accessed 9/6/2012.

5. Litvan I. Update on epidemiological aspects of progressive supranuclear palsy. Movement Disorders. 2003; 18:S43-S50. http://www.ncbi.nlm.nih.gov/pubmed/14502655. Accessed 9/6/2012.