In this article, I would like to pay homage to the tens of thousands of caregivers -millions, really-who help people with Alzheimer’s and other dementias in all stages of their disease. I will also provide ideas and suggestions to add to your dementia caregiver’s toolbox to better inform you and hopefully assuage some of your daily stresses. This article will provide you with a few helpful “how-to” tips and expose you to common dementia caregiving situations. If I am successful, I would have passed on to you the means to somehow derive some joy from this difficult disease.
It all starts with some memory issues. Life then changes when memory loss gives way to a diagnosis of Early Onset Alzheimer’s Disease, Alzheimer’s Disease, Lewy Body Dementia, Fronto-Temporal Dementia, or Other Dementias. Once your aging loved one begins to change right in front of your eyes, your life gets thrown into a frightening whirlwind of fears and uncertainty while you try to grasp on to the harsh reality of this degenerative disease. Your brain starts aching, and caregiving acquires a new meaning. You realize that you are now a caregiver from this point on, and your endurance and emotions will be continually tested.
You never expected to find yourself in this reversed role position. Your Mom or Dad was your friend, and they loved and looked after you all your life, and now there you are, life-altered, and the roles reversed. Their disease, and the signs and symptoms that get worse by the day, now impact your life in many different ways. You feel lost and on your own, and even your friends seem remote and disconnected. You have entered the dreaded territory of Alzheimer’s and Dementia, a disease that can seem to stigmatize the whole family. Here, there are no magic wands, no silver bullet, and no road maps.
Dealing with Alzheimer’s Disease is an emotionally taxing, complicated, and unstable journey. Everyone caring for a physically frail and memory-impaired aging loved one eventually needs assistance. From my vantage point at the helm of a home care agency with dozens of client families impacted by dementia, and as the son of a mother diagnosed with Alzheimer’s disease, I still find myself floundering when I don’t have the answer to a “mom” issue. And while experience may teach you how to mitigate the worst signs and symptoms of the disease, no amount of experience can make someone wear another caregiver’s shoes. In that sense, caring for a person with Alzheimer’s is not only tough, but also a lonely task in which it is so easy to sink and get lost.
What can make Alzheimer’s caregiving especially challenging is the feeling of an unreciprocated flow of love. If people impacted by this disease could speak to us and make us understand, we would not have to read the tea leaves when we try to decipher their wishes, anger, bursts of agitation, combativeness, and the occasional smiles and signs of a little recognition. Oh, how we jump with joy when Mom seems to recognize us, when she bestows that lovely smile upon seeing us. Those little moments are priceless in the daily ordeal of living with and looking after a loved one with Alzheimer’s disease.
Then there are the day-to-day aspects of dementia care: surviving bath time, determining why your loved one isn’t eating, ways to get them to maintain a normal schedule, and wondering and why they keep repeating themselves and feeling the urge to leave in order to “go home.” See our article on Dementia Behaviors for specific information and suggestions on how to deal with common behavioral problems that can arise in people with dementia.
According to the Alzheimer’s Association, more than 5 million people suffer from Alzheimer’s, with three times as many family members (and occasionally friends) providing dementia care. With so many individuals suddenly assuming the dementia caregiver role, the increased stress is not surprising. Caregiver stress becomes a malignant companion, its toxic chemicals relentlessly rummaging through our brains and causing indelible harm. If daily stress were not sufficient, caregiver stress is often combined with guilt and other anxieties that ultimately pave the way towards deteriorating health, depression, physical ailments, and chronic disease. Indeed, research has found that dementia caregivers experience greater symptoms of depression, anxiety, and other negative mental health consequences compared to their peers. Caregivers are also in worse physical health on average, prone to higher blood pressure, worse immune response, and greater susceptibility to illness.
We keep hearing that looking after yourself as the caregiver is as important as the care you provide your aging loved one. But, are we listening? And is it not easier said than done? However, it is important to remember that the healthier you are as a caregiver, the better the quality of care you will be able to provide.
There are treatments for both the care recipient and caregiver, although in the case of the patient, Dementia Treatments serve only to defer the worst symptoms of the disease temporarily. More effective treatments and a Dementia cure remain a key goal of increasing clinical research efforts at countless universities and medical centers. For caregivers, remember that experiencing stress and depression is not abnormal in this situation. There are tools that you may find useful, such as cognitive-behavioral therapy and/or dementia care support groups.
My personal experiences with dementia support groups have shown them to be lifesavers. Not only do they provide a safe zone for people to weep and be comforted by others who share the same predicament, but dementia support group friends are probably more understanding and accepting of your need to vent than your closest friend or family member. I have always been awed at the seeming ease with which common dementia caregiving problems and challenges are resolved in dementia support groups.
While some initially find it difficult to share their concerns with strangers, I have personally witnessed incredible relief as caregivers realize that they are not as isolated as they may have thought, and they can safely discuss their feelings among new friends in the support groups. Dementia support groups can also showcase the creativity of your peers in the group and offer unique ways of looking at a situation that you may not have considered. Dementia support groups are where compassion, empathy, friendship, education, resources, laughter and salvation reign.
To all family members, friends, and caregivers of a loved one with Alzheimer’s or another type of dementia: build a network of friends within dementia support groups. This network can become an important safety net, as dementia care takes a village.
Dementia Caregiver Support Groups are also easy to find. Community services such as senior centers, hospitals, hospice chapters, and other family organizations try to cater to the need by providing disease-specific groups (i.e. Alzheimer’s Disease, Parkinson’s Disease, Lewy Body Dementia, and other brain-related illnesses) at various days and times.
The Family Caregiver Alliance (National Center on Caregiving) seems to have all the bases covered when it comes to dementia support groups: foreign languages, LGBT issues, online help lines, money and diagnosis issues, and website help to find a support group in your area. While it is important to have friends and social support in general, it is hugely important to connect with people who know what it’s like living with and caring for a loved one with memory impairment. Caring for someone with a neurodegenerative disease like Alzheimer’s, with it’s impact on memory and the brain in the form of gradual mental decline, creates unique challenges that only a person who has gone through it can understand.
Most aging seniors who begin to show signs of memory impairment begin receiving care while they are still living at home. If your budget allows for Live-In Care, you can hire caregivers to help you fulfill your capacity as a principal caregiver. If In-Home Care is a viable option, you can hire caregivers directly, through a home care agency, or through a referral agency. View our article about Live-In Caregivers to help decide what care option is best for you.
Home Care Agency
A Home Care Agency will cost the most (typically an all-inclusive $22 to $24 an hour), but they will vet their caregivers, supervise them, pay their wages, withhold their taxes, and fill-in for them when they are sick or need time off.
A Referral Agency will also do the vetting, they will offer you the opportunity to interview a prospective caregiver, and they match your loved one with a fitting caregiver. You will have to ultimately employ the caregiver yourself, usually at a cost of $15 to $17 an hour, including the agency fees.
Hiring caregivers on your own would naturally be the least expensive option ($12 to $14 an hour, depending on where you live), but you would have to advertise, screen, interview, do background checking and other vetting processes, and then fill-in for absenteeism either in person or with another directly recruited caregiver.
In all of the above scenarios, you would want to end up with caregivers who are trained and have the temperament and experience to look after cognitively-impaired individuals.
What happens when your loved one’s condition is no longer manageable at home? There are various options depending on your financial situation, the condition your loved one is in, and the state of their signs and symptoms.
Board and Care or Group Homes
Board and Care or Group Homes are usually small homes (10 residents or less) that provide their patients with a room, meals, medication management, and one-on-one assistance with personal care needs. They typically cost between $2,000 and $3,000 a month, depending on location and other attributes.
Assisted Living Facilities (ALFs)
These tend to be larger, some tiered to include areas with more specialized care, commonly referred to as “memory care wards”. They provide many of the same services as board and care facilities but are often more sophisticated, and with additional services such as on-site physical therapy, activity directors who supervise daily programs, and other amenities. An average, middle-of-the-luxury-scale ALF can cost between $4,000 and $6,000 a month.
Sometimes, an interim solution can be the answer. Day Care is one such option, as in Adult Day Programs and Adult Day Health Programs. These programs provide social stimulation, activities, nutrition and, in a day “health” program, limited medical supervision.
The major anxieties that plague older adults, besides money and outliving their resources, are about where they are going to spend their “golden years,” and how they are going to pay for it. Here are some of the ways to pay for In-Home Long Term Care:
Medicare and Medicaid
Unfortunately, Medicare does not pay for long term care, whether at home or in facilities and nursing homes. As for Medicaid, it is a state-by-state safety net for low-income groups. Your loved one has to have a net worth of less than $4,000, or income below $37,000 a year, in order to qualify.
Long-Term Care (LTC) Insurance
You are in good shape if your loved one had the foresight to buy a policy when they were younger, for the cost of LTC Insurance is high when they get into their seventies or eighties. The exact coverage you get is up to you, as you can choose from countless options. You only get access to your benefits, however, when you have doctor-certified health needs. You may purchase LTC insurance policies that reimburse a specified daily amount for a particular number of years (for example, $220/day for 5 years). By scaling up the daily reimbursement rate or the number of insured years, your monthly premium would naturally increase.
This benefit, frequently referred to as Aid and Attendance or Homebound Pension, is for Veterans who require care for Activities of Daily Living (ADLs) such as bathing, dressing, incontinence and other ADL functions. The Veteran must have served for at least 90 days during war time and have been honorably discharged to qualify for Veterans Administration. Spouses are sometimes eligible to receive these benefits depending on special circumstances. The application process is also need-based: The Veteran must have less than $80,000 in assets not including their home or car. There are various places to get help with the application process, including Veterans Posts and local VA offices.
Tens of thousands of people have found government-backed reverse mortgages to be just the right recipe for peaceful transitions into older age. Reverse mortgages have become popular, particularly for older persons who are intent on staying at home for as long as possible or, conversely, if they are “house-rich and cash-poor.” Think of a reversed mortgage as a credit line that is granted to you with your property used as collateral. Here are the main prerequisites:
- You must be at least 62 years old, must own your home outright or have a small mortgage outstanding, and must reside in your home
- You must make timely and ongoing payments for property taxes, HOA fees, and insurance (your income and other assets will be vetted to insure that you can meet those obligations)
A lender will provide you with a loan that is based on the estimated value of your home and other givens such as your age and health, and those of your spouse. You can either cash out the loan in a lump sum, or receive it by way of a credit line that you can draw from on an “as needed” basis.
With Reverse Mortgage, you avoid incurring any interest or other monthly payments until the very end. The interest you would pay would be only on the part of the loan that you cash out, and you would retain full ownership of your home until you either repay the loaned amount in full, with accumulated interest, move out of the home, or pass away.
Benefitscheckup.org offers a simple checklist that takes about 30 minutes to complete. It has qualifying questions regarding assets, medical conditions, and other information. When completed, the website directs you to various relevant programs.
Employee Assistance Program
If you or a family member are employed, make sure to check your company’s benefits. If you have an Employee Assistance Program (EAP), inquire as to whether they will assist with parental care issues. Many will provide an experienced care manager to come to the home, do an assessment, and create a care plan for the family.
Medication can be a major issue for seniors with cognitive or vision problems. It is important to remember that when your impaired loved one insists that they took their pills, they probably believe it. Your oversight can prevent medication mishaps that can have serious consequences. Make sure your loved one’s pharmacist and doctors know all the medications he or she is taking. Some drugs react badly to others, or to certain foods or supplements.
A compartmentalized daily dose medicine box is an inexpensive device that gives a visual reminder to an older adult and his or her caregiver. Family members can either double check to make sure they are filled correctly, or actually fill them out. Some pharmacies will actually fill these for you at a nominal cost. Other pharmacies have their own single dose systems they provide for a few extra dollars. There are also more elaborate “smart” set ups with various dispensing and reminder systems.
What About You?
While the attention is focused on your loved one, how do you, as a dementia caregiver, retain your own strength and sanity? Here are a few tips for coping as a dementia caregiver:
- Join a support group for education and socialization; the more you know about dementia, the better you can cope. Consider therapy if you think it may be helpful.
- Ask for help! (Martyrdom ended in the Middle Ages).
- Make sure you take care of yourself; keep your own medical appointments, exercise, and rest. (There is a reason why flight attendants tell adults to put their own oxygen masks on first).
- Keep a sense of humor; it’s okay to laugh – not at Mom, but at funny “situations”.
- Keep a sense of perspective; caregiving should not be all-consuming, and it is not forever, although it often seems that way.
- Don’t put your life on hold; It’s okay to have fun or treat yourself once in a while.
- Be flexible (It really is okay to have cereal for dinner).
- Be kind to yourself and forgive yourself; none of us are perfect, and just relish the fact that you are doing your best for your loved one.
We see you, we know you are there, and we understand your predicament. Dealing with a loved one’s dementia diagnosis can be an emotional and difficult time. It is important to remember that you are not alone: you have millions of comrades-in-arms, all around the nation-all around the globe. Take advantage of the vast caregiving community. Because our health care system in the U.S. focuses on acute care (e.g. treating a heart attack, performing surgeries), the majority of chronic care depends largely on family members stepping up to serve as caregivers. In addition to saving our healthcare system billions of dollars annually, you are providing an invaluable contribution to your loved one who likely benefits greatly from your personalized level of care. Besides, anyone who has been around persons with dementia, their families, and their caregivers is aware of everything you do and the tolls you pay. You are doing everything that is in your power. How much more can anyone ask of you? Be patient with yourself and try to be patient with your loved one. That’s all you can do.