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.
This is an April 2018 Rochester, NY newspaper article by Frank De Blasé, well-known music writer, photographer and Parkinson’s patient. For a year, he researched medical cannabis in New York state and its possible benefit for Parkinson’s Disease (PD) symptom treatment, testing it on himself, of course. He reports that medical cannabis offered no help for his PD symptoms.
www.rochestercitynewspaper.com/rochester/parkinsons-cannabis-and-hope/Content?oid=6235237
Brain & Life magazine (brainandlife.org) is published by the American Academy of Neurology. In their January 2017 issue, they address the challenge that many with neurological disorders have of getting to the grocery store. Sometimes it’s more practical to have groceries delivered.
Brain & Life magazine investigated these options:
* houses of worship
* Supplemental Nutrition Assistance Program (food stamps)
* Meals on Wheels
* food banks
* online shopping
The full article can be found here:
Affordable Options for Grocery Delivery
by Frank Kritz
December/January 2017
Brain & Life
Robin
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
———————
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).
