There are so many types of caregivers: spouses who have loved each other since childhood, spouses who have had years of conflict in their marriage, adult children of loving parents who are raising their own children and trying to hold down a job, adult children who have been in conflict with their parent for as long as they can remember, partners who are sick themselves and still responsible for the the care of their loved one, and everything in between.  The one thing I believe they all have in common, is that at some point in the caregiving journey every caregiver has the thought “What about me?”  Some might whisper this silently in the night as they put their loved one back to bed for the third time, some might say this with gritted teeth when their loved one repeats the same question for the 48th time in 10 minutes.  Caregivers continue on with this role whether due to love, or a sense of duty, or because of financial hardship.  

There are no words that change the situation, but some perspective can be helpful.  The most important thing to understand is that there is a difference between “needs” and “wants,” and that the caregiver’s needs are just as important as the care receiver’s needs.  Your need for proper nutrition, a good night sleep, keeping doctor appointments, time to relax, are just as important as your loved one’s needs.  So often the caregiver puts the patient’s needs above their own.  The patient’s doctor appointments are always kept, and the caregiver cancels their appointment to have that growth on their cheek assessed for the third time in 4 months.  And, as the patient’s dementia or physical illness progresses, the weight of the caregiving responsibilities increase.  At some point, no one person can do it all themselves.  If you don’t find a way to take a break, your body will take the break for you.

There are a wide variety of important documents every person should consider putting in place as they experience changes in their physical health or cognitive functioning.  Some documents require the assistance of an attorney, some don’t, and then there is a grey area in between where it is advisable to have legal input, but individuals can complete them on their own. Also of note, many attorneys lump some of these documents, Last Will and Testament, Living Will, and Health Care Proxy for example, into a package deal. This information is not meant to be seen as legal advice, but to help you to be better informed.  All families facing a serious health crisis or dementia diagnosis are strongly encouraged to see an Elder Law Attorney and receive case specific assistance.

Caregiving through the Holidays 

Holidays have a way of magnifying the feelings of stress we have experienced all through the year: sorrow, anger, frustration, loneliness, exhaustion. It can seem impossible to get everything done, the shopping, cooking, decorating, etc., and still manage day -to-day affairs and perhaps a job, and be the primary caregiver of a loved one with dementia. Be kind to yourself this year, review the following suggestions and see if any could help make this season a little lighter. Your life has changed— it is ok to update your traditions. 

Have realistic expectations of yourself. First, identify the things that mean the most to you about the holiday and make accomplishing that your top priority. Then, listen to your body and your spirit, and when it says you’ve had enough, stop and rest. You don’t have to go to every party. Maybe it is easier for you to have a small group of family or friends come to your home and ask everyone to bring a dish. Cut back on your shopping, or do what you can on-line. 

Don’t be afraid to ask for help, or to delegate. Chances are, you have people in your life who want to help, but don’t know how. If someone asks you if there is anything they can do, take them up on it. Maybe they can sit with your loved one while you run to the bank, or engage them while you wrap presents. Maybe they can pick up your groceries, or if they are handy, they can fix your leaky faucet. 

If you do go to a gathering at someone else’s home, have a plan in place. Communicate with your family your desire to have opportunities to socialize, and identify in advance who will engage or monitor your loved one so that you can relax for a few minutes. 

Be prepared. Being around a crowd can be overwhelming for a person who is cognitively impaired. Sometimes a little work done in advance can make an outing go more smoothly. Bring props or activities that will help keep your loved one involved: bring a photo album, put on music, or a favorite tv program. Maybe there is an activity she/he can participate in, like making the salad or setting the table. 

Avoid overindulging. It can be easy to overindulge in alcohol at a festive gathering, especially if you have been highly focused for a long time. The feeling of being able to let go can lead to a miscalculation on what you can handle. Stay mindful and pursue healthy self-care habits. If you feel a family gathering is getting out of hand, it is absolutely ok to make it an early night. 

Don’t be afraid to ask for help. There are Caregiver Support Groups that you can attend in person, or on-line. Counseling is also available via telehealth as well. Sometimes it is impossible for the caregiver to get out of the house. Take advantage of the information and compassion that trained professionals are able to provide. If you would like to talk to someone, please reach out to our staff at NeuroCog Solutions. We are here to help.

Misconceptions about the Living Will

 There are many important, and sometimes difficult decisions that we must make as we age. Many people see an attorney when they first marry or have children to make sure they have legal documents in place in case of any unforeseen life events. A Living Will is sometimes completed at this time, and then subsequently stored with other important documents and forgotten about. Years later circumstances change and sometimes wishes change, but the document is never updated. Healthcare decisions one might choose when they are 30 or 45 and healthy are not necessarily what they would choose if they were 70 or 80, or if they were any age but facing a life limiting condition. It is advisable to update a Living Will and discuss your wishes with your Health Care Proxy and other family members. You do not need a lawyer to fill out Living Will and Health Care Proxy Forms. These documents can be downloaded on your computer and, once completed, signed by two witnesses.

 In addition, many people mistakenly believe that a Living Will is all they need to ensure that their health care wishes are carried out, and this is absolutely NOT true. EMS personnel do not honor wishes stipulated in the Living Will. This document is seen as a suggestion manual on how to proceed if you are ever unable to make decisions for yourself. If you do not want heroic measures such as CPR, you must discuss this with your doctor and the two of you can fill out a different type of document, a Do Not Resuscitate (DNR) or a Practitioner Orders For Life-Sustaining Treatment (POLST) form, which both you and the doctor will sign. Only this form will be honored by EMS, as it becomes a doctor’s order once signed by the physician.

There are a variety of factors that are considered when the doctor is approached with a request to put a Do Not Resuscitate order in place, these include the patient’s age and health status. A DNR might be appropriate if the patient had a terminal condition or a chronic debilitating disorder, or perhaps due to frailty, any attempt at life-sustaining treatment is likely to be ineffective or futile.

 If you or your loved one have been diagnosed with a progressive cognitive disorder, it is essential to discuss health care wishes with loved ones and update health care documents with your doctor so that you receive the care that you want, and none that you don’t. There is no right or wrong decision, only what is right for you. If you would like more information, or just want to discuss things with a Social Worker, please contact NeuroCog Solutions, as our knowledgeable and compassionate staff are available to meet in person or via telehealth sessions.

What About Driving?

Driving safety is a challenging topic and rarely all-or-none in the beginning stages.  Caregivers or family members often wonder when their loved one is no longer safe to drive and may struggle with the decision to “take away the keys.”  Once the disease affects thinking, reaction time, and visual skills, the safety of your loved one and all the bystanders on the roads must take priority.

Ideally, when a neurodegenerative condition like Alzheimer’s disease is caught early, the person with cognitive changes can be a part of the conversation.  It may be helpful to talk about the topic, despite the discomfort it may bring.  I often ask, “How will you know when you are no longer safe to drive? What will it take for you to come to the decision that you should no longer drive? How can we plan for this in the future?”  This helps the individual prepare for the decision to stop driving, before they become unsafe.  In fact, early in the disease process, individuals may start to limit their driving to daytime hours, avoid major highways, and only drive short distances on familiar routes.  In this scenario, the individual may make the decision on their own that it is not worth the risk of getting into an accident and stop driving before the cognitive changes actually interfere with driving ability.

But, the above scenario is the ideal situation and let’s face it…many caregivers find that their loved one may refuse to hang up their keys.  Giving up driving decreases the individual’s independence and places greater demands on family members to provide or coordinate transportation.

 Family members often express the following thoughts and fears:

·        Is mom safe to drive?

·        If she stops driving, how will she do her shopping? It will isolate her.

·        How will he/she get around?  Now I will need to make time to provide regular transportation.

·        It’s only a quick drive to the supermarket down the road for scratch offs, he will be so upset without this routine.

·        Will he become angry and belligerent?  Or depressed an anxious?

·        Will he listen to me? I’ve never had to tell my parent what he/she can or cannot do.

Family members agonize over how long to allow their loved one to drive following a dementia diagnosis.  What is the line in the sand that determines he/she is no longer safe behind the wheel?  In reality, a person is safe to drive until the day they suddenly aren’t, but no one knows when that day will be. If you wait for the day when they are a danger behind the wheel, you may be faced with a tragedy. There is no predicting which day he/she will go through the red light, or will get lost, or worse, turn into oncoming traffic on the highway. The decision to take away the car keys must take place before your loved one is a danger to themselves or others.

 Family members often ask, “How do I tell the person with dementia that they cannot drive anymore?” Honesty works in some families and the patient may feel sad or angry, but they accept it and stop driving. Other families don’t find that it goes quite so smoothly. In these cases, the following strategies may be helpful:

 ·        Enlist the assistance of the patient’s doctor.  Each doctor can help in a different way:

o   Ophthalmologist:  Check their eye sight. If there has been a decline in vision, they might have to surrender their driver’s license.

o   Primary care physician or neurologist: Call the office before the next check up and let them know you want their help telling the patient they are no longer safe to drive.  Ask for a script that says the patient is not safe to drive. You can display it on the fridge as a reminder.

o   Neuropsychology: a neuropsychological evaluation can measure the patient’s thinking skills and help determine if they are safe to drive.  A neuropsychologist can explain to the patient why they are not safe to drive.

·        Consider a driving evaluation to determine safety on the road. 

If the patient refuses to accept what the doctor has said, the doctor can write a report which you can submit to the Motor Vehicle Administration informing them of the patient’s incapacity. I have also met family members who took away the car keys or discretely disabled the vehicle.

There is no doubt, this is one of the hardest tasks for the family caregiver, but you cannot compromise on safety. The guilt you will experience if your loved one hurts themselves or someone else would be even more difficult to bear.  You do not need to go through this alone.  Reach out to a professional to get guidance and develop a plan that will work for you and your loved one.

Interventions for Agitation

Dementia is commonly broken down into three stages, with each stage bringing it’s own set of challenges.  The Early Stage comes with the diagnosis and feelings of grief as the patient and family come to understand that the future will be very different from what they had planned and hoped for.  The Middle Stage brings a variety of new behaviors, and the need for increased safety vigilance.  The End Stage requires more physical care.

This blog entry will focus on Interventions for Coping with Increased Agitation.  Not every person who receives a dementia diagnosis will experience agitation or Sundowning Behaviors, but these behaviors are common.  As the ability to think logically decreases, the patient’s judgment and problem solving skills also diminish.  The patient may lose the ability to express thoughts and feelings, they can feel confused, anxious or frightened.  They can become easily overwhelmed with too much stimulation, noise or activity.  They can become frustrated when unable to make their needs known.

Communication Tips:

• Communicate clearly and in simple sentences while making eye contact.  

• Use yes/no questions if your loved one is unable to complete sentences.  

• Try using a Communication Book if your loved one has difficulty with word finding.  (A Communication Book is a book filled with pictures to help identify needs.)

Grounding Techniques:

• Using words and tone of voice to help orient and allow the patient to feel more secure, such as “You are safe, I’m here with you, it’s OK.” "Breathe."

Redirection Strategies:

• Use music

• Engage in an unrelated topic of conversation to pull the patient’s mind away from the situation/thoughts/conversation that is troubling him/her

• Watch soothing videos of nature, funny animals, birds, fish

• Engage with a pet or even a realistic stuffed animal 

• Bring the patient to a room with decreased stimulation, dim the lights, etc

Anticipate Problem Situations:

• Modify the schedule if she/he is appearing troubled or agitated

• Be flexible

• Plan around her/his better times of the day

Notice Physiological Needs:

• Is he/she too hot or too cold?

• Is he/she over tired?

• Is he/she hungry?

• Is he/she constipated, or experiencing UTI symptoms?

Medication Options:

Sundowning is common and is often a restlessness/agitation that frequently occurs any time after 3:00 PM.  The above interventions may not reduce symptoms.

Talk to the patient’s doctor and ask about medications for sundowning symptoms.  The doctor may prescribe a medication for daily use or for use only when needed (PRN).  Keep a log of all PRN doses, and stay in contact with the MD if you begin to administer medications regularly, or if they are not helping.  

You are not alone in this.  If you are struggling, reach out to a family member or friend, or seek guidance from a professional.  Help is available.

As discussed in my Caregiver Blog, there are two basic ways to hire a private caregiver, either use a Home Health Aide agency, or hire a private individual through word of mouth, etc. Once you decide what it is that you are looking for, there are a variety of questions you will want to ask in order to make an informed decision.

Caregiving Support: Initial steps after you or your loved one has received a troubling diagnosis -

First Things First: Getting your affairs in order