caregiver’s resources

• Certified Home Health Aide has specialized training and can handle more complex diet regimes, simple dressing changes and take basic vital signs
• Personal Care aka Home Care aka Companion Care assist in various activities of daily living (ADLs) like bathing, shopping, home making, running errands and companionship

We settled on a hybrid. Two of Mom’s aides are actually Certified Home Health Aides, one is a nice, retired, neighbor lady with good instincts, but their duties are more that of a Personal/Companion Care. You find what works through trial and error, and for us, personality was key.

And you want support from folks who are having the same or similar experiences. Regular folks will mean well, but it won’t take long before you’re ready to tear the head off the next person who says, “Well, why don’t you just…” or “Everybody forgets things…” or “You should really cherish this time…” or anything at all about something they have absolutely no experience with. Because having dementia and caring for someone with dementia, is not like the memory loss that comes with old age. Losing short-term memory means, no, Mom cannot learn to do X this new way, so thank you, but Shut. Up. You.

This is why 12-step programs work, why cancer-support groups work, why the caregiver support you’re going to find will work. Same meeting same, speaking the language, understanding, learning from each other, finding compassion, finding humor. It’s the US in Us Against Them.

• New York: Caring Kind  holds free educational programs as well as hosting support groups. I joined a twice monthly support group and stayed for almost five years. It was the only place I could say “I love my mother and sometimes I just want to put a pillow over her face and sit on it,” and heads would nod in agreement and understanding. It was the only place I could laugh hysterically at some of her antics. I recommend laughing early and often. Caring Kind’s “Understanding Alzheimers” seminar taught me what to expect and that I wasn’t going to be alone in this.  I’ve taken the financial and legal workshop twice – once for general information and again a year or so later when I was deeper in and had specific questions. Then I got an eldercare attorney, but more on that later.
• Nationwide: The good news of so many people are being diagnosed with some kind of dementia (Alzheimers, Lewy body, vascular, mild cognitive impairment, Frontotemporal) is that there are lots of support groups: Aging Parents and Facebook support groups like this one. I’m involved with two that are strictly for daughter-type caregivers, because, have I mentioned that you will need support? Without it, you will simple implode. Or explode. Or walk into the sun babbling to yourself.

• Healthcare Proxy aka Medical Power of Attorney appoints an agent to legally make healthcare decisions on behalf of the patient, when the patient is incapable of making and executing their own healthcare decisions including end of life decision
  making
• Durable Power of Attorney appoints your “attorney-in-fact”  to act in your place for financial purposes when and if you ever become incapacitated.
• Revocable and/or Living Trust’s owner may change its terms at any time – remove beneficiaries, designate new ones, and modify stipulations as to how assets within the trust are managed. Because of that flexibility, the assets are not shielded from litigation, Medicaid, etc.
• Irrevocable Trusts remove the assets from the benefactor’s taxable estate, meaning they are not subject to estate tax upon death, they relieve the benefactor of tax responsibility for any income generated by the assets, and offer tax-shelter benefits that revocable trusts to do not.
• Life Estate can be used to gift property (such as the family home), splitting ownership between the giver and receiver. The original owner still retains some interest in the property, but Medicaid does not count it as an asset. It gets tricky if you want to sell the property, the profit is split between the two owners and there can me massive capital gains taxes.
• Living Will tells folks how you want to be treated in certain medical circumstances including end-of-life decision making if you’re in a persistent vegetative state (i.e. withdrawal of artificial feeding and hydration and other life support measures). A Living Will is different than DNR (see below).
• Regular Will is simply a legal document that expresses a person’s wishes as to how their property is to be distributed after their death
• Will and Grace, because we need a laugh break
• Advance or Health Directives allow you to express your preferences concerning medical treatment in an extreme medical situation when you cannot communicate, including at the end of your life.
• MOLST/POST/POLST form is used by health care practitioners and facilities to document a patient’s goals and preferences regarding life-sustaining treatments
• Do Not Resuscitate (DNR) is a request not to have CPR if your heart stops or if you stop breathing, which is not as clear a direction as you’d think. Some states have their own EMS/DNR forms, Non-hospital DNR form, and without that specific form, the EMTs who arrive will preform life saving procedures. Check your state’s Department of Health (DOH) website.
• Palliative Care is a form of specialized medical care for people with serious illness, with the focus on providing relief from the symptoms and stress of a serious illness.  Palliative care – is also a component of hospice care – but can be used as a separate area of medical practice while the patient receives treatment.
• Hospice / Home Hospice is fully covered by Medicare, Medicaid, and most private insurance plans to provide the best quality of life possible for patients whose doctors believe they will not live past six months. The focus is caring, not curing, it provides pain management, symptom control, psychosocial support, and spiritual care to patients and their families when the illness cannot be cured. It can take place in the patient’s home, a nursing home or in a hospice care facility.

Browse some of the online stores the specialize in helping the elderly and those with dementia. Here are three, but there are tons: Alz.store, Aging Care, Parent Giving

• Large clock with day, date, time of day – Helps Ma ground herself, especially whether it’s morning, afternoon or night.
• Baby monitor – Without it, I couldn’t sleep securely. This one was inexpensive and has worked like a charm for the two years so far.
• White/Dry Erase Board – I write her aide’s name and any appointments for that day
• Medic Alert Devices – some need activation, some will do a daily check up call, some have fall monitors. Look around and find one that works for your/her needs, some are covered by Medicaid.
• Cameras – You can get a cheap set up so you can see what’s going on to check up on aides when you’re out, or just keep an eye on your person. Have them in several rooms, see it on your phone. Or get one disguised as a clock or something.
• Echo Show, Nest Hub or one a dozen other options give you a way to drop in and check on your person, face-to-face.
• Assistance and Adaptive devices: Grab bars, shower chairs, sliding shower seats, rail guards – there are so many things to help you help them. It all depends on the what your person’s abilities and needs are. If you are on hospice, ask them to provide what you need before spending your money. A lot of them are available on Amazon, or direct from the manufacturer. I’ve had good luck making decisions based on brand names like Drive Medical or Nova Joy, but we got our first transport chair for $50 from Facebook marketplace. It suited our needs at the time. Then we upgraded.
• Keep notebooks (physical and/or on Google Drive).

– Physical: I have physical spiral notebooks I take with me to every doctor’s appointment where I record: Stats, Questions to ask, Research I’ve done, Behavioral Changes, Test Results.
– Digital: I keep both of our medical histories in Google Drive, including medication changes and procedures.

• Have the aide keep a notebook. This is the one I created for our aides – you may want yours to be online if you’re managing remotely. Track: Vitals, Behavioral changes, Appetite, Exercise, Attitude/Mood, Confusion. UPDATE: We’ve switched to electronic record keeping with the free Walmart Wellness app. I can track temperature, blood pressure, medications and more. There is a section for photos (which can be added to each journal entry, assignable to-do lists, contacts and most importantly to me: the journal. I can see in real-time what the aides have entered, track trends in temperature or weight over a week or a year. Really helpful. Available for both iOS and Android.
• FidSafe has been a lifesaver for having medical and legal documents available all the time, everywhere. Like when I need to send Ma’s doc my POA. Or they need to see her Medicare card. I store Ma’s and mine here. Currently it’s available at no cost through Fidelity.

HELPFUL RESOURCES 

• Care.com – Nationwide job board for filling family care needs including child care, senior care, special needs care, pet care, housekeepers and tutor
• Homepay.com – Managing household payroll and taxes
• Daily Caring – Tips and Help for Caregivers
• AgingCare.com has a great newsletter with real folks asking real questions and other real folks offering up what worked for them.
• Veterans Aid and Attendance Benefits if your person is a veteran or surviving spouse there is money there and the VA is very nice and helpful
• CaringKind NYC– The Heart of Alzheimers Caregiving; emotional support and education
• Alzheimers Association – Education and medical research
• A Place for Mom – Help finding senior housing
• Support for Dementia & Alzheimers Caregivers Facebook group
• Dementia Through Daughters’ Eyes Facebook group
• Working Daughter Facebook group
• The 36 Hour Day – A Family Guide to Caring for People Who Have Alzheimer Disease, Other Dementias, and Memory Loss  – This book was gifted to me when I was at the beginning of my journey, thank you Gina
• More books. Perhaps the world doesn’t need another dementia/caregiver/memoir
•  Eldercare Locator find help in your community by zip code
• Health & Human Services – links to caregiver resources, Social Security benefits, Medicare enrollment, Medicaid coverage & Resources near you, listed by state
• National Council on Aging partners with nonprofit organizations, government, and business to provide innovative community programs and services, online help, and advocacy. Information on everything from Falls Prevention to Adult Protective Services
• Google Caregiver Support, because in case you didn’t hear me the first few times, you can’t–and don’t need to–do this alone. There is support out there.
• AARP Checklist for What to Do When a Loved One Dies, because sooner or later, it’s going to happen.
• Protect Against Posthumous ID Theft  – Because it will happen sooner or later, know what you need to do to protect your loved one’s identity after they’ve passed. Yeah, it’s a thing.