At Every Turn, Choose Togetherness

At one time or another, everyone has reason to feel isolated within their surroundings. Sometimes, people purposely isolate themselves to get the quiet time they need to focus and concentrate. Other times it is circumstance, such as being the caregiver for a loved-one, that causes isolation.

People who seek isolation usually do not feel lonely. However, involuntary isolation can make people feel entrapped and very, very lonely.

Feelings of loneliness can occur with or without the presence of other people. Parties and other social events can be lonely if the need for interaction and inclusion is not met. At the most basic level, loneliness is missing  cues that remind us of who we are.

There are many things caregivers can do to lessen their feelings of isolation and loneliness. First, self reflection. Frequently, the family caregiver, believing he or she is the only one who can give their loved-one the proper care, seems unable to accept offers of help from family members, friends, community or faith-based organizations. 

When help is accepted, regularly scheduled getaways, hours or days long, can give caregivers the respite they need to relax, reconnect with friends, or to participate in a favorite activity. 

People living with Dementia also experience isolation and loneliness. Friends and family may disappear, and with their disappearance, there are even fewer opportunities for socializing. Eventually, as the condition progresses, isolation and loneliness become inevitable. 

For those in early stages of dementia, living life to its fullness - saying yes to life more than no -  can help them cope with the emotions that come with their diagnosis. Join your loved-one on their “I’ve always wanted to visit or do" lists. Do silly things together, and encourage activities that preserve family history. 

It is equally important to give your loved-one the pleasure and challenge of arranging activities and extending invitations to family and friends. Doing so becomes a declaration of “I am still here.” 

With symptom progression, efforts to reduce isolation and feelings of loneliness require help from family, friends, and professional caregivers. Visits to their home or assisted living community or conversations by phone or video can help your loved-one recall the roles he or she played within the extended family and community. 

Other ways include encouraging your loved-one to leave the confines of their room and spend time where people congregate in common-use areas. Interactions with babies, children, pets and therapy animals may also reduce feeling of lonesomeness. 

Finally, opportunities for self-expression can help people living with Dementia to feel less isolated and alone. There are many simple ways that range from arts, crafts, and music activities to writing poetry and visiting a near-by nature preserve, to connect people who have Dementia to their authentic or most essential self.

Content Contributor: Janet Yagoda Shagam, PhD, is a freelance medical and science writer and the author of "An Unintended Journey: A Caregiver's Guide to Dementia." Available through Amazon. (Modified by K. Ogden, team member Dementia Society of America)

The opinions expressed by contributing authors are not necessarily the opinions of the Dementia Society, Inc. We do not endorse nor guarantee products, comments, suggestions, links, or other forms of content contained within blog posts that have been provided to us with permission, or otherwise. Dementia Society does not provide medical advice. Please consult your doctor. www.DementiaSociety.org

Special Needs Trust Planning for the Future

Dementia is costly, both financially and emotionally. If you or a loved one has been diagnosed with Dementia, you are probably overwhelmed with the prospect of how to financially plan for the future. A trusted partner at a time of need can be welcome help.

One option for managing finances is a pooled special needs trust (SNT). A pooled SNT is administered by a nonprofit organization. The organization makes decisions on how funds from the trust are disbursed on behalf of the trust Beneficiary, makes decisions on who invests the funds, fulfills reporting requirements to government agencies and stays abreast of changing regulations so that means-tested government benefits (like Medicaid and Supplemental Security Income (SSI)) are not jeopardized.

Each Beneficiary’s funds are placed in an individual sub account. The cash assets from all sub accounts are then “pooled” together and invested as a group. Earnings based on the Beneficiary’s share of the principal are reinvested into each sub account. A financial record is maintained for each sub account that reflects all the activity in the account. Each beneficiary or their advocate has access to the financial information either electronically or by mail.

Most pooled trusts offer both First Party and Third Party SNTs. A First Party SNT is established with the Beneficiary’s own funds. A Third Party SNT is funded by a third party for the benefit of the individual with dementia or a family member with special needs.
A pooled special needs trust makes sense for multiple reasons. It allows one the opportunity to set aside funds that will enrich the quality of life for the Beneficiary. The Beneficiary can benefit from trust administration services including investment and management. All disbursements are for the sole benefit of the Beneficiary. 

Pooling the funds reduces administrative fees and increases the principal for investment purposes. A pooled SNT will also protect eligibility for Medicaid and Supplemental Security Income in many instances; however, special planning is required for Beneficiaries over the age of 64 for whom Medicaid Long-term Care benefits may be needed.

It is strongly recommended that you consult with a Trust and Estates Attorney or Elder Law Attorney who can advise you on how a pooled special needs trust can benefit your situation. When appropriate, a SNT can give you a sense of well-being regarding your own, or your loved one’s, financial future while continuing to live life with quality and dignity.

Authored by Joanne Marcus, MSW, Executive Director, Commonwealth Community Trust (CCT). CCT is a 501(c)(3) national nonprofit organization that administers affordable and efficient pooled special needs trusts. CCT was founded in 1990 and is managed by a Board of Directors who serve with a caring heart and without compensation. With years of experience, CCT has a proven reputation as a prudent steward and administrator. For more information about CCT, contact Joanne Marcus, MSW, Executive Director at jmarcus@trustcct.org or 804-740-6930. Visit our website at www.trustCCT.org for access to information and additional resources.

The opinions expressed by contributing authors are not necessarily the opinions of the Dementia Society, Inc. We do not endorse nor guarantee products, comments, suggestions, links, or other forms of content contained within blog posts that have been provided to us with permission, or otherwise. Dementia Society does not provide medical advice. Please consult your doctor. www.DementiaSociety.org.

#helpinghand #lifeisspecial #specialneedstrust #dementiasociety

Having the Conversation

The doctor told me that, “Dementia is the cause for the changes we have all noticed.”

These are sobering words are ones that elicit conversation between loved-ones. The location could be an office where a counselor facilitates productive discussion. Or perhaps the best place is an informal one where coffee and cake creates an atmosphere of comfort and connectedness. 

It’s hard to know where to begin. Some find it easiest let the conversation gradually drift from the weather to the emotional and practical aspects of dementia. Others prefer having the help of counselor to guide productive exchange. 

People in the early stages of dementia may be the one who initiates discussion. He or she may start by addressing their fears of what they face as well as their distress of becoming a burden. He or she may have words to say about choosing the person who they hope will oversee their care as well as express the desire that dementia does not create ill-will between family members. 

His or her thoughts about end-of-life care are another important topic. Here listening maybe more important than discussion. Listen to what he or she has to say about advance directives, comfort (palliative) care and hospice--the last stage of palliative care. 

Conversation among-loved-ones will undoubtedly include more immediate wishes such as enjoying time together, taking bucket-list adventures, and the challenge of the “things I have always wanted to do” list. This is the time to create memories. 

Sometimes families and same-sex couple and their families do not have the luxury of beginning conversation with a diagnosis of early-stage dementia. When this is the case, your loved-one may still have the capability to listen and perhaps make comments. Be sure to acknowledge his or her presence and, as much as is possible, engage them in the discussion.

Speaking with and among loved-ones is an ongoing process. Events occur that require reassessment. Family dynamics may have deteriorated and should be addressed before they worsen. It may be time to talk about the conflicts between personal views about death and dying and your loved-one’s advance directives. Or perhaps reassessment involves orchestrating a family gathering or a final adventure.

Janet Yagoda Shagam, PhD, is a freelance medical and science writer and the author of “An Unintended Journey: A Caregiver's Guide to Dementia.” Available through Amazon.

The opinions expressed by contributing authors are not necessarily the opinions of the Dementia Society, Inc. We do not endorse nor guarantee products, comments, suggestions, links, or other forms of content contained within blog posts- that have been provided to us with permission, or otherwise. Dementia Society does not provide medical advice, please consult your doctor. www.DementiaSociety.org