What’s hidden under the floorboards, or in the attic? Does dad keep a list of passwords for his online banking, or are they all in his head? Mom might be eligible for VA benefits, but where is the discharge paperwork? What information do caregivers need to have on hand to assist family members?
Faith Parker is a Hebrew Health Care Volunteer and 25-year active Auxiliary member, and recently she attended an Aging Care Academy® seminar. Faith’s family has found themselves in a position of caring for elder family members or friends of family, near and far. Faith has been using resources we gave her and compiled a list of all the information caregivers may need some day. With her permission we share it, and encourage you to share it with your friends and family.
Full legal name and residence
Birth date and place, birth certificate
Social Security and Medicare numbers
Employer(s) and dates of employment
Education and military records
Sources of income and assets; investment income (stock, bonds, property
Insurance policies, bank accounts, deeds, investments, and other valuables
Most recent income tax return
Money owed, to whom, and when payments are due
Credit card account names and numbers
Safe deposit key and information
Will, beneficiary information
Durable power of attorney
Living will and/or durable power of attorney for health care
Where cash or other valuables might be kept in the home
latest blood work
medications including over the counter, time of day, dosage and illness
allergies including to any medications
names and numbers of all physicians
long term health policy info
all other medical ins policy numbers and contact information
Passwords for internet programs, etc.
Neighbors phone number
Where apt and car keys are located
Veterans status, numbers and paperwork
Pets – pet care/vet
Names and contact info for important family members
While gathering this information may seem like a full-time job, doing it in advance of an emergency is always easier than in crisis mode. If the elder can gather it and put it in a safe place, that is even better. Much of this list, and the resources Faith compiled them from, were provided by the National Institute on Aging. They have some great resources, including the a booklet called “So Far Away,” an “Advance Care Planning” sheet, and “Getting Your Affairs in Order” AgePage (visit www.nia.nih.gov/health/topics/legal-planning for these and other free resources). There is also a superb “Emergency Preparedness, For Seniors, By Seniors” booklet from the Red Cross (www.redcross.org ). One of the best resources to keep it all in one place is a book by local Connecticut author Lynn McPhelimy called In the Checklist of Life. When you read the reviews online, you will agree it sounds like a necessity for every family.
Thank you Faith for sharing your compiled list. And thanks to the National Institutes on Aging and the Red Cross for providing such valuable information to us all – for free! For more information on caregiver seminars, visit www.agingcareacademy.org.
By Pamela Atwood, Director of Dementia Care Services
The lovely, autumn evening of October 14 heralded exploration and discovery not seen since Columbus himself wandered toward India and discovered America (okay, maybe that’s a bit of an exaggeration). With the help of local radio personality Mary Jones from WDRC-AM 1360, a panel of Hebrew Health Care’s experts helped live and virtual/social-media audiences discover new perspectives on caregiving and aging wellness. With some refreshments and caregiver survival kits, AgingCareAcademy.org was launched. I thought today I’d share with you some of the questions and answers from that evening.
Q. I think my mom may be depressed. How do I know and is that something her primary care physician (PCP) can evaluate?
A. Depression is very common among older adults, for a number of reasons. You want to look for persistent sadness and changes in outlook, mood, and activity level. If those changes exist over at least a 2-week period she may be depressed. Obviously, any discussion of suicidal thoughts should be reported to her medical professionals immediately. The PCP may be able to evaluate and treat this simply, or may refer to a geriatric psychiatrist, psychologist for talk-therapy or both. If medication is ordered, it usually takes 4-6 weeks to get to a therapeutic level. If symptoms haven’t significantly improved by then, a different brand of medication may be helpful.
Q. What is the best brand of emergency response device?
A. Whichever the individual will wear! One of the most common reasons for system failure is that the person refuses to wear the device. No one can help if you’ve fallen and can’t get up if you aren’t wearing the button to call for help. Emergency alert services (EAS) are improving with every advance in technology. Some are limited to in-house use only. But nowadays there are several which utilize GPS and cell phone technology and can be set to summon help from wherever the individual is located. They may even be automatically triggered if the patient falls and responders can tell where in the house the person is located. EAS charges can vary quite a bit and may depend on: state/region of country; level of technology and notifications; installation requirements; extra pendant for spouse; equipment purchase; contracts; replacement batteries.
Q. How do you know what level of help in the home is needed, or what is available?
A. Education through Aging Care Academy and information on our website can help you evaluate and make care decisions. Our next semester of courses begins in Hartford later this month. Confident caregivers come from quality education, and the best resources and faculty are available at Aging Care Academy. Individual elder care consultations are also available. Go to AgingCareAcademy.org for more information and to register for classes or book a consult today.
By Pamela Atwood, MA, CDP, CLL, Director of Dementia Care Services
(This is a fictional, but all-too-real story.)
Before families reach out for assistance, they have usually exhausted themselves emotionally, physically and financially. Most families don’t realize that what they pay for out of pocket might be covered by insurance, community-based programs, or could be tax-deductible. This story might sound so familiar that you may think I’ve peered into your home. Nope – my family lived it, as have so many others. Question is – will you do something to help yourself? Read on and learn what you can do.
Karen is VP of a large bank in NYC. She is 62 years old. She is the caregiver for her father who is 97 and has dementia. She has been caring for him for the past three years. He used to be a successful accountant. She noticed he was having problems paying his bills on time and paying his taxes, balancing the check book, etc. At first she blamed depression after mom died. Then she blamed the post office. Then she blamed changes in his vision. Three years ago he got lost in the city trying to find his doctor. He now requires a wheel chair for distance and is not safe living alone.
- Karen has borrowed against her 401K retirement plan to help pay for dad’s care.
- She has sold her house on Staten Island and moved into an apartment large enough for her, dad and a live-in aide if they ever need one.
- She pays $1600 more per month than what a 1-bedroom apartment in the same building would cost.
- Dad’s retirement/social security covers the balance of the rent and his supplemental insurance premium.
- Karen pays out of pocket for most medications (the Medicare Part D Plan is known for many “holes” in coverage).
- She pays approximately $1,000 per month in incontinence supplies.
- She pays more than $1,600 per month for day care to give dad a safe, structured place for him to go while she’s at work. The day care is open from 9a-3p.
- She pays nearly $20 an hour for a companion to stay with her dad until she gets home from work after 6pm.
- She pays $330/trip for a wheel-chair van for monthly doctor appointments (sometimes more than once a month).
- She pays $40 for a grab bar to be installed in the shower. She pays out of pocket for a shower bench to make it easier for her to help him with hygiene.
“You don’t realize what you’re paying for or what someone else should pay for. You just pick up things as you need. It’s overwhelming. You just continue to survive,” says Karen. When she went to the doctor’s office recently, her nurse practitioner asked if she was stressed as a caregiver. “I never knew I was one. I’m a daughter, and I help dad, but I don’t remember at what point I became his caregiver. It was surreal – I’ve got caregiver stress?”
Every one of the underlined statements/words in the introduction, and each of the bullets are linked to possible help – either pieces that should have been paid for by Medicare, or which may be covered by a community service or tax deduction. Your answers are available at www.agingcareacademy.org . On Monday, October 14 at 6:30pm we will host a free community seminar which will address many of these issues – can’t attend? We’ll be tweeting live from the event. See the website for details. Our Aging Care Academy courses answer these questions, and more. An individualized consultation will prepare you in every way for the comprehensive issues that caregivers and their loved ones face. Email us or chat online with us at www.agingcareacademy.org.
By Pamela Atwood, MA, CDP, Director of Dementia Care Services, Hebrew Health Care
(NOTE: The subject of this blog post may be uncomfortable, but we offer it as a way to open real discussions about a subject which needs consideration. Although you will quickly understand my biases through some sarcastic words below, let me disclose that I believe the state and federal governments are wrong in their current positions, and need to be open to discussing these issues in a reasonable debate about aging, health and memory disorders.)
Despite the millions of insensitive jokes, there are serious concerns about sexuality and people with dementia. A Bloomberg article this week highlighted issues of individual rights, facilities’ responsibilities, lost jobs, licenses and more because of complex issues which most people don’t think about or discuss.
At Hebrew Health Care, we have spent many years talking about these subjects, training our staffs and other organizations, and developing guidelines for appropriate responses when people with dementia express their sexuality or seek companionship.
Now, if you don’t work in healthcare, you’re probably thinking, “What?!? Why is my sex life any of your business?” Let me break it down.
1) The government (federal and state surveyors and licensors) charge health care organizations with the responsibility to protect our clients. For instance, if we do not ensure you are hydrated, we have failed to protect you from the risk of dehydration. That may make sense if you have ever seen some facilities or home care situations where neglect is a serious issue. The logical next step is that we need to protect people from all kinds of harm, including harm from themselves and others, and that includes sexual assault. (Now, you’re thinking, “Okay, the first part makes sense, but Pam, isn’t there a difference between intimacy and assault?”)
2) The next issue is, I believe, related to our culture’s biases about sex and youth. Many of us believe our parents only had sex the # of times that there are children in the family. Even very progressive families have a difficult time imagining grandparents, or great-grandparents remaining sexually active. (The one exception is about YOUR sex life as an older person. What we want or expect for our own intimacy in later years is different than what we think about for others.) If it wasn’t for commercials about medications which treat “ED” or “low T” there would still be intense reluctance to even discuss these issues in mainstream media. (I know, I know; you’re now saying to your computer screen, “Pam, you’re making me uncomfortable, but how is this related to nurses losing their licenses? Don’t you in health care know how to deal with these issues?” – so glad you asked.)
3) The only people allowed to have sex are married people. That’s proven fact, right? NO? Huh. Well, according to the State it is. Well, maybe not in society, but in nursing homes. And well, maybe not married, but they both have to be consenting adults. This makes sense really – the problem is really one’s capacity to consent. The most serious issue about sex/intimacy and dementia is consent. How do we determine your right to consent? If you don’t consent, then it’s rape, right?
What if you DO consent – in fact, you seek out the partner – but you have dementia. Are you still consenting? That is the core issue here. There are no good tools to assess one’s ability or legal cognitive capacity to consent. People with serious mental illness, to the point where they have legal guardians to make all of their health and financial decisions, still retain the right to get married and have sex. Older adults with dementia (who have previously had normal sex lives) need to be PROTECTED (according to regulators) from what others would easily otherwise determine to be consensual relations.
This leads to all sorts of grey areas (fifty maybe? – sorry, I couldn’t resist the connection).
A – if two people with dementia kiss, is that assault? And who committed the assault?
B – if one person has dementia and the other doesn’t, and they are married, why isn’t that marital rape (by state definitions – and no, I don’t believe in “implied marital consent”)?
C – if one person has dementia and has forgotten the spouse, and resists the spouse, shouldn’t THAT be an issue to address?
D – what if the residents (one or both with dementia) are so distressed about our preventing the relationship that they have agitation, crying or anxiety as a result? Should we put them on medications to treat these new symptoms?
There are many more issues, and in good facilities these are debated and staffs are trained how to respond with compassion and fair consideration. What do you think? Do you think health care professionals should be determining (along with your adult children or other “decision makers”) whether or not you develop intimate relationships if you get dementia? At what point should others be involved? What are some ways that facilities can protect people from abuse/exploitation but allow people to express their normal human instincts? Let us know what you think (with decency and taste please…).