Dementia Care: What to Do When They're Losing Their Mind, So You Don’t Lose Yours Along the Way

Or, Things to try if Murder/Suicide is not an option

There are four things you need to know right off the bat—

1. You need support.

2. Your person needs familiarity, consistency and a regular schedule so, if you’re going to move her, do it as early and infrequently as possible. When you do, make the new place seem familiar with photos and art and things that she’ll recognize. These things tell my Ma she’s “home” once I get her into her “blue bedroom.”

3. Fucking up is part of life

   • Your parents fucked you up—trust me, they did;

   • You’re going to fuck your own kids up—if you haven’t already; and

   • You will fuck up as a caregiver.

4. You need support.

With the hundreds of resources online, this makes hundreds +1. We each find our own way; each situation is different, every patient and caregiver brings their own baggage. I’m attempting a Cliffnotes version of how to get started, what to expect, and how to take care of yourself.

FINDING PAID CAREGIVERS

First step:

You may be the primary caregiver, but you can’t do everything, all the time. You need to find someone or someones who can help take care of Mom.

Although Ma was in an assisted living, a broken back exacerbated the dementia and meant I needed someone right away. I started with an agency that’d been recommended by the assisted living at $27/hour for 12-hour minimum shifts. I did the math (you’ll be doing “math” pretty often) and I was looking at $324 per day shift.

Caregivers get less for overnights, but let me define less: Minimum Wage. At the time, minimum wage on Long Island was $11/hr out of the $27 I was paying for each hour. From which, taxes were taken out. That’s New York, specifically, Nassau County, but wherever you are, know this: an agency will charge a lot and very little of which gets to the caregiver. That underpaid, undervalued caregiver is the person you’re trusting with the emotional and physical health of your mother. Or father. Or whomever. I slept there every night to save the cost of overnight care, but that was a short-term answer to a long-term problem.

Let me just stop for a moment and say, short-term answers are answers that give you time to breathe and figure out the longer term solution, so give yourself that permission.

Day care alone was costing us $9700/month on top of the $7000/month for assisted living. We were not then, and have never been, $16K/month kind of people, but I also was not looking for the cheapest solution when it came to caring for Ma. Despite signing an agreement not to, I had no guilty feelings when Ma moved into my house and I “stole” two caregivers from the agency. I offered them considerably more than they were getting at the agency, which was still considerably less than $27/hr. Win/Win/Win

Second step:
Once you have your emergency staffing done, start looking for longer-term solutions.  I needed an idea of what a decent salary around my way actually was, and care.com was a great resource. It’s sort of a job site for nannys, senior care, housekeepers and so on. I browsed for an idea of what folks were getting paid, posted an ad and found someone we love to add to our team. If/when you decide to put the care staff on the books, you can use their HomePay.com service, it saved me a lot of headaches around taxes. (Note this is just my experience, there are other services for finding, hiring and paying care staff. I’m not recommending one over another or trying to be comprehensive – just give you a starting point.)

You may need skilled nursing, we didn’t. Definitions matter more to Medicaid, but here is my best appropriation of who does what, so you know what to look for. And here’s a chart that might help you figure out who (you, Medicaid, insurance, Medicare) pays for what and which you need right now.

• 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.

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SUPPORT AND INFORMATION

You need both. 

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.

Research & Local Resources

The Alzheimers Association is nationwide and more focused on medical research and cure than support, but they can help with local resources, discussion boards and maybe even a clinical trial.

Housing
A Place for Mom is a good resource of assisted living, supportive housing and memory care across the country if you’re planning on moving Mom out of her own home but don’t want/can’t manage her in your house. I used it to find the right assisted living community when Ma was no longer up to manage a lot of the Activities of Daily Living (ADL) on her own, like meals, laundry and driving, but still craved companionship, activity and independence.

I haven’t found it necessary to employ a Geriatric Care Manager yet, but this might be your next right step, especially if you’re doing long distance caregiving, or find yourself completely overwhelmed, or if you haven’t gotten yourself any support, dammit! The National Institute on Aging describes what they can do, how they can help, and how to find “a licensed nurse or social worker who specializes in geriatrics, a sort of “professional relative” who can help you and your family to identify needs and find ways to meet your needs…(They) can help find resources to make your daily life easier, …work with you to form a long-term care plan and find the services you need.”  Also if you’ve spoken to an eldercare attorney, they should be able to recommend one or two to you.

Eldercare Attorneys are, surprise, attorneys who specialize in issues that have to do with elders. This is where you will get your legal paperwork taken care of: Healthcare Proxy, Power of Attorney (POA), Trusts (both revocable and irrevocable), Wills, and Advance Directives. You can find free templates for most of these online, and that works if it’s all simple. If no one is going to contest things. If there is no property, or debt, or any real money to speak of because even if you don’t need it now, you may come to a point where you want your person to get on Medicaid. One of the best nursing home/memory care units in the country is Medicaid only. If you didn’t squirrel away Mom’s money (irrevovable trust) and her house (life estate) at least five years ago (Medicaid’s current look-back period) you’re going to lose it. Plus, filing for Medicaid is a nightmare, the rules and regulations are not only different in each state, but sometimes from county to county. Which is why my eldercare attorney has a $300/hr specialist to advise on only that. As far as finding one, I recommend getting a personal recommendation, ask your network. And be prepared to spend money to protect money. They can help you with —

Getting the paperwork in order

• 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

• Power of Attorney grants legal authority to your “attorney-in-fact” that allows an agent to act on your behalf until such time as you revoke it, become incapacitated, or die.

• Springing Power of Attorney appoints your “attorney-in-fact”  to act in your place when and if you ever become incapacitated.

• Durable Power of Attorney appoints your “attorney-in-fact”  to act in your place even after you 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.

Guardianship 

I know next to nothing about obtaining a guardianship except that it’s not easy. That said, if your person is isolated, vulnerable, and there isn’t anyone close by helping them navigate life, be aware that there are nightmare “professional” guardians who can step in without you even knowing and take advantage.

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DME (Durable Medical Equipment) and more

1. Medline Heavy Duty Padded Drop-Arm Commode. I didn’t get the padded back, I should have. The drop away arms make it a lot easier if and when you get to the stage you need to lift and pivot the person.

2. Medline Toilet Safety Rail with Adjustable Height Arms for your toilet. Not a lot else to say about it. Easy to install.

3. ShowerGlyde Transfer Benches come in different lengths and options. It slides easier than a standard transfer bench and has the opening in the center so you can wash and clean without the person having to stand. If you have the room, you can set it up so it starts out over the toilet, then slides into the shower/bath. This was a little pricey, but I don’t regret it.

4. Foldable Transport/Transit Chair with Swing Away Arms. Drive and Nova both make good ones. I prefer Nova because of the larger back wheels, easier on city streets. Drive has models with larger back wheels, but the arms don’t swing away, and that’s really helpful for lift & pivot…

5. Lundberg Bed Alarm System for the Elderly. A lifesaver. Life. Saver. Let me know when she was just thinking of getting out of bed in the middle of the night.

6. Adjustable Bed Rails with Swing Down Safety Railing

7. Bed Rail Pads turned out to be necessary as well.

8. Med-Aire Alternating Pressure Pump and Pad Shop around, there are different ones and different prices, but we’ve been really happy with this one. It came with the hospital bed we rent, I’d buy it if it didn’t.

9. Medical Sheep Skin Bed Topper - We had to use two. This was recommended by a friend who’d cared for someone until they died of old age and I credit this for Mom not getting any pressure sores on the heels of her feet.

10. Blink Cameras - I added the Mini Pan Tilt later in the game.

11. V-Tech Audio Monitors - you can plug in the receiver or have it run on batteries clipped to your belt.

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DEVICES & APPS

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.
  UPDATE 2: The Walmart Wellness app is no longer available. I’ve tried a few different ones and settled on VerifyCare. 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, cost is minimal and there is a free trial period.

• 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.

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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.

To come:

1. Managing Care Remotely

2. Memory Care

3. Hospice / Home Hospice / Palliative Care

4. Alternative Final Options

   • Cremation

   • Assisted Suicide

TO READ or LISTEN

NPR with Terry Gross: After an Alzheimer’s diagnosis, her husband asked for help to die with dignity
Shortly after he was diagnosed with Alzheimer’s disease in 2019, architect Brian Ameche, then in his mid-60s, told his wife, novelist Amy Bloom, that he wanted to end life on his own terms, before the disease robbed him of everything.

Medium: Exploring the link between Menopause and Alzheimers :Dr. Lisa Mosconi’s grandmother had two sisters and a brother. All three sisters died of Alzheimer’s. Their brother was spared. Why?

New York Times (gifted)  The Last Day of Her Life :When Sandy Bem found out she had Alzheimer’s, she resolved that before the disease stole her mind, she would kill herself. The question was, when?

Toronto Star: The Wanderers : Six in 10 people with Alzheimer’s and other forms of dementia become lost at least once. Why do they wander, and how do we stop them?

The New Yorker (paywall): The Comforting Fiction of Dementia Care :Many facilities are using nostalgic environments as a means of soothing the misery, panic, and rage their residents experience

New York Times: The Opinionator  – The Right Paperwork for your End of Life Wishes