Taking Care, a support group for caregivers of those with memory loss, meets the first and third Mondays of every month on Zoom. If you are aware of someone who may not know about our meetings, please encourage them to contact Pastor Shirley so they can be included. This group welcomes anyone from the community as well as Dayspring members and friends. Helping those around us makes all of us stronger.
– All articles by Anne Ahland, unless otherwise noted.
Sorting out the Signs of Dementia
We’ve all done it; we totally forgot the appointment we had on the calendar. That sometimes leads to a fretful session of wondering, “Do I have dementia?” Let’s resist the temptation of jumping to conclusions and look at some data because only a qualified health care provider can diagnose dementia.
Dementia is actually a group of symptoms indicating impaired brain function or cognitive decline. Signs may include shorter attention span, mood swings, memory problems, and disorientation. Someone may have a hard time recalling names of people she knows well, may not recognize familiar places, or may get lost. Familiar tasks such as getting dressed or preparing a meal may become a problem. Someone may have trouble with decision-making, problem-solving, concentration, following a conversation, or participating in conversation. Some people experience paranoia, hallucinations, and anxiety. Each person’s situation presents differently.
Similar symptoms may actually be due to other health issues that need to be addressed by a care provider. These may include strokes, nutritional deficiencies, infections (including UTIs), stress, depression, chronic alcohol abuse, brain tumors, hormonal disorders, Parkinson’s, or Creutzfeldt-Jakob disease. Appropriate treatment must follow a qualified diagnosis. Medical treatment, such as taking antibiotics to resolve an infection, can reverse some of the signs.
Some people may be experiencing MCI, Mild Cognitive Impairment, that may or may not eventually evolve into dementia. People with MCI still function in many of their life situations, but have occasional difficulties or use poor judgment. Increasingly, their hygiene may be overlooked; they may dress in inappropriately warm clothes on a hot day; their frustration may flare more often; and they may become withdrawn. Awareness of MCI allows the caregiver to gain some understanding, modify the environment for safety, and help the person remain as independent as possible for as long as possible. For instance, encouraging a person with MCI to make choices should be modified by limiting the number of choices available. Rather than “What would you like for lunch?” a caregiver could ask, “Would you like soup for lunch today?”
Concerns about changes in cognition usually start with scheduling a time with their primary care doctor. The doctor should be made aware of the concerns before the appointment. The medical evaluation should include lab testing, a thorough examination, and a review of medical history to rule out physical causes of cognitive changes. The primary care doctor may refer the patient to a specialist for additional cognitive and imaging tests.
A diagnosis helps in several ways. The person can be treated appropriately for the underlying cause of their changes. The caregiver can have a better understanding of what to expect and how to plan for the future. The person’s living environment can be altered to provide more safety and comfort. All of these are tremendously important to the quality of life of both the person experiencing the cognitive changes and the caregiver. Often, a person’s cognitive changes are recognized in retrospect. Following the diagnosis, family members recall things that happened a year or a few years ago that they did not really think too much about at the time.
Our group for caregivers also offers support, encouragement, and opportunities to share experiences with one another. If you know of someone who can benefit from the group, please join us.
Can Dementia Risk be Reduced?
Some recent research suggests that there are ways to reduce the risk of developing dementia. Often, we are reminded to eat a healthy diet, exercise, and keep our brains engaged. In addition, we need to incorporate the following:
- Turn off the TV. Watching Television is a passive cognitive activity.
- Read more. Reading does promote cognitive activity. If it has been a while since you read a book, try reading short stories, a magazine about a topic you find interesting, and gradually expand. Less TV watching leaves more time to read.
- Use your hearing aids. If adjusting to hearing aids was difficult, and they are not used during all waking hours (for instance, they are usually in a drawer), your brain is not being stimulated with conversations and social interactions. Research shows that this is a dangerous path toward cognitive decline. Wear your hearing aids.
- Avoid vitamin deficiencies. A healthful diet including fruits and vegetables every day is good brain food. If you may be coming up short of your daily needs, multiple vitamins with a mineral supplement may help bridge the gap. Limiting alcohol consumption may also help prevent vitamin deficiencies.
- Sleep. Sleep helps rejuvenate your brain. Try to use good sleep hygiene. This includes having a routine to help you relax before bedtime. (Avoid TV or screen time.) Aim for a consistent bedtime and a consistent wake-up time. Stay clear of caffeine-containing drinks or
foods (for instance, chocolate) in the late daytime or evening. Check with your doctor about sleep apnea, especially if you snore. - Maintain your vascular health. Work toward managing your vascular health, which includes blood pressure, diabetes, and cholesterol. Better management of these will improve circulation to the
heart and brain. - Get moving! Use a pedometer or other step-counting device. Walking is a very healthy habit, especially if you can gradually increase your pace and the number of steps you take. Using a pedometer will give you a baseline and help you set goals. Walking outdoors in nature is great when the weather cooperates. Walking outdoors with a friend is even better. But even walking on a treadmill can help to increase your movement and circulation.
If you think you are falling short on these things, you may want to choose one item as your initial focus. As you establish new, healthier habits, you can choose a second one to work on. Every improvement will benefit both your brain and your overall health. There is no time like the present to choose which one you can start today!
Tidbits re: Caregiving to someone with dementia
Heart health and brain health are closely linked. Both caregivers and the person receiving care will benefit from some guidelines:
- Avoid fried and processed foods; some studies also suggest avoiding Aspartame.
- Aim to eat fresh, high fiber foods. These are often in the form of fresh fruits and vegetables. Choose whole grain foods (which is more important than multigrain.)
- Try to include some protein at every meal. If there is a decrease in appetite, try several snack sized mini-meals each day, rather than the traditional three meals a day.
- Offer refreshing liquids several times throughout the day to prevent dehydration.
- Help monitor blood pressure and blood sugar levels if needed.
- Be aware of mental health and changes in mental health. Stay socially engaged.
Some more tidbits:
- If your loved one has been diagnosed with dementia, memory loss has begun. Your loved one does not have adequate cognition to take medications on her own. If medications are not being taken properly, there will be additional setbacks. All medications must now be supervised. A person with dementia cannot manage her own medications.
- HealthDay News reports: Higher levels of “good cholesterol” (HDL) in the fluid surrounding your brain and spinal cord may provide some degree of protection from Alzheimer’s disease. A study of 180 volunteers indicate that the HDL particles may be a way to treat Alzheimer’s, long before mental decline occurs.
- A caregiver asked: How do I answer my dad with dementia when he talks about his mom and dad being alive? Do I go along with it, or do I tell him that they have passed away? David McPhee, PhD Psychologist, and therapist said: Enter into his reality and enjoy it. He doesn’t need to be “oriented.” Thank God the days are gone when people were drilled with …”reality.” If dad spends most of his time in 1959, sit with him. Ask questions he didn’t have time for before. Ask about people long dead, but who are alive to him, learn, celebrate your heritage. His parents are alive to him. If he tells the same story over and over, appreciate it as if it’s music, and you keep coming back to the beautiful refrain. This is not “playing along to pacify the old guy,” this is an opportunity to communicate and treasure memories real but out of time.
- Some days are harder, and patience is rarer. As caregivers, we are ashamed if we become impatient and snap at the loved one receiving care. Caregivers are humans — they are overworked and sometimes under-appreciated humans. Do not get bogged down in guilt, because the person receiving care for dementia has already forgotten the incident. Every hour is a fresh start.
- Alzheimer’s is sometimes referred to as “the long goodbye.” Recently my cousin made a profound remark at my dear Aunt’s memorial service. She had dementia for several years before her death at age 94. He said that her dementia had allowed them to say a slow goodbye. As she faded a little each week, they slowly adjusted to her changes, and it allowed them to accept her death with more grace.
- We discovered that most caregivers in our group also have pets. I believe that this is an indication of the generous caring, love, and willingness to help that makes up the fiber of a caregiver.
- Finally, I was in a conversation with caregivers of family members with dementia. A common dilemma is that the loved one with dementia is asking (sometimes demanding) something that is just not possible. In previous times, providing an explanation was adequate, but now the demented care receiver cannot understand facts and explanations. Rather than trying in vain to explain why it is impossible, two people stated that they use these responses:
- “I had not thought of that. Let’s talk about it.” (Let the conversation meander to other topics and away from the issue.)
- “We will need to do that tomorrow.” (Most likely the care receiver will not remember the conversation to bring it up tomorrow, but this statement can be repeated if needed.)
No one knows everything about caregiving but sharing our experiences with other caregivers is an enriching experience. We share our successes and our challenges in a confidential, caring environment. If you have a relative, a friend or a neighbor that is facing challenges with their memory and may have dementia, we invite you to join us twice per month via Zoom. The act of caring about a person with dementia makes you “a caregiver.” Email Pastor Shirley for more information or the Zoom link.
What About Holidays?
Every family has holiday traditions we treasure from generation to generation — the recipes that only taste right when made in a certain kitchen, the songs that bring everyone to their feet, the rituals so familiar they feel like home. The details may vary, but the one consistency is this: we love to celebrate with the people we love.
If your family includes a loved one living with memory loss, the holidays can bring a new set of questions alongside the familiar joy. The gathering that once felt effortless may now require more thought — more patience, more flexibility, more grace. How do we honor our traditions while making space for what our loved one needs? How do we help them feel present and included rather than overwhelmed or lost? How do we take care of them — and ourselves — at the same time?
First, I think it is important to plan ahead.
Where is the family gathering? If it is at a park, can your loved one be comfortable there for extended time? Is the terrain safe for him to be able to walk to the gathering place? Is there a shelter from the sun? Is the day going to be exceptionally warm for him? Is there a toilet that can be accessed? It is so important that your loved one does not become dehydrated, so monitor that she is drinking water consistently during the day.
If the gathering is at a family member’s home, check out the accommodations from your loved one’s care needs perspective. Are there small children and too many toys littering the floor to be safe? Is there somewhere where your loved one can sit to enjoy the social event, and also a place where he can retreat if it becomes too much activity? Ideally, several family members can take turns sitting with your loved one to judge if he is becoming fatigued from so much going on, to explain who the children are if he is curious, and to make sure he is not feeling forgotten or ignored.
Anticipating needs like discreetly offering to take him to the bathroom will be needed. If the noise and activity level are too much, it may be a good time to move him to a quieter location in the house. Do not leave him alone in a strange room, however, or he may become confused and try to get out of the chair or off of the bed alone, and fall. It will be a confusing situation, so particular diligence is absolutely necessary.
Is your loved one usually more interactive in the morning or in the afternoon? You may need to modify the family’s tradition to accommodate the best time for your loved one with memory loss. Your family may have “always had brunch together” but if she hates getting up in the morning and requires lots of time to get dressed, be ready to change the tradition to accommodate her. An afternoon gathering may suit her needs better.
Who will transport your loved one? Can he get in and out of their car safely? Can the driver bring his walker or wheelchair in the car? If having your loved one at the gathering does not work out, and she becomes too tired or overwhelmed, the driver must be willing to leave to take her home without indicating to her that this is imposing.
Is it a good idea to discuss with your loved one about if she wants to attend the holiday celebration with your family? Probably not. This may cause a lot of worry and concern for her. It may be excessive information that is confusing to her. If it does not work out that you can safely include your loved one in your holiday celebration this year, do not feel guilty. And as you redesign the plan to best accommodate her care needs, you can give thanks for another holiday shared, even if it’s now solely your memory. Celebrate your holiday, whatever it looks like this year.
We invite you to join us as we meet on Zoom twice per month. Email shirley@dayspringumc.org for details.
“She’s become a liar!”
A couple of years ago I was on the phone with a friend, and I inquired about her mother, who was a bubbly mid-90-year-old delight. I had known both of these ladies for several years. Maybe it was good that we were on the phone, because when she answered me, my mouth dropped open. She had sputtered, “My mother has become a huge liar!”
When I recovered, I did say how surprised I was to hear this and asked what was happening with her mother. “Well, she lies about nearly everything these days!” she told me.
Extracting more, I began to determine the problem. Her mother was in good health for a lady her age, but some of her chronic conditions had suddenly accelerated her aging process and had clouded her thinking. The daughter described how her mother had “lied about so many things now.” Rather than seeing the inaccurate answers as being brought on by physical changes, the daughter saw them as “lies.” I felt so very sad for these two.
When accumulated age is compounded with physical changes, cognitive changes will follow. The person experiencing these changes did not plan this, and certainly is not acting out irresponsibly. Dementia or
cognitive decline is terrifying for our loved one experiencing it. When discussing things that are common in our conversations, our loved one may reply with something that is very inaccurate. To my friend, those replies were “lies.” In reality, our loved one is doing the best that he or she can do. There is no intention of deception, but suddenly it may feel to her like everything is a trick question.
Our loved one may claim that “I have not seen him in weeks” while you know that that he visited our loved one just yesterday. So, should we bring facts to the table and drill some reality into our loved one who is so inaccurate? Should we show proof of that visit yesterday, so she stops being inaccurate?
I guess I would have to ask, WHY? Our loved one is not lying. She is saying it feels like a long time since she has seen him. If she claims to have had no lunch, but you know that she did have a meal at noon today, there is no need to prove that she is wrong. Today’s lunch was just not recorded in her memory. So what? Let it go.
Our loved one with dementia or cognitive decline cannot change what is going on, but we as friends, family members and caregivers can certainly change how we respond. There is no need to present facts, proof, evidence, or to dwell on our loved one’s “wrong answers.” We cannot fix what is changing, but we can control how we respond. It would be a good time to just go to a different topic. If she is unwilling to move to a different topic, it may be because she really needs to discuss this topic further—she may have fears or concerns attached to the topic that she is finding so confusing. There is nothing wrong with asking her to “tell me more about that” so she can get it off her chest. She is doing the best she can to tell you how she is feeling. We can offer the best support by just listening without correcting or interrupting.
Our loved one’s inaccuracies are not lies, and their inaccuracies will not change history. We are the ones who need to change how we respond. We have the capability to listen, to care, to be compassionate, and to not judge. Our love and acceptance, no matter how inaccurate she is, will change history. Please remember to go to her reality, because she cannot find her way to come to our reality.
If you have a friend or loved one who is experiencing cognitive decline or dementia, please join us in our
Zoom meetings twice each month. We cannot cure dementia, but we will offer support on your journey.
Email Pastor Shirley for details or the Zoom link.
I Wanna Hold Your Hand
In February of 1964, the Beatles were introduced to the U.S. with their song “I Want to Hold Your Hand” when they sang it on the Ed Sullivan Show. They sang “I wanna hold your hand,” and a lovely line in the song simply says, “and when I touch you I feel happy inside.” Many things have changed since 1964 when I first heard their song, but that will always be true for me — I’m happy inside when I can touch someone I care about.
It seems a natural tendency when we meet a little baby that we offer a fingertip for the baby to grasp. Is there a better feeling? I remember walking with childhood friends, hand in hand, and swinging our arms high and giggling. I remember the first time a boy wanted to hold my hand, and how exciting that was. The human connection of something as simple as holding hands begins early and never leaves us.
In the busy life of being a caregiver, we may not be thinking of holding hands, but maybe we should.
For a person with dementia, having a conversation is more challenging every day. Words get lost, and frustration sets in as word-finding becomes more and more difficult. Frustration often couples with fear, when our loved one realizes that she is no longer in control in her shrinking world. The combination of frustration and fear may come out in the form of anger, and a caregiver is often the target of that anger. What our loved ones with dementia cannot express is likely that they really need two things from us for comfort — our time and our touch.
Holding hands takes the responsibility of being able to converse off of the person with dementia. She may not be able to come up with words, but if offered the hand of someone who cares about her, it is a loving gesture. Sitting next to her, offer your hand, palm up, while making eye contact and ask, “may I hold your hand?” And those unmet needs—both time and touch,are there to comfort her.
For the caregiver, it may seem like another time demand at first, but caregivers need time and touch,
too. When starting to hold hands with your loved one, try to relax. Maybe some mindful breathing will help. It may be best to not make conversation, but to just enjoy the moment. For your loved one, he is relieved of the responsibility of trying to converse. It can be a magic moment. Enjoy the shared peace, the connection. I would suggest that you not mix anything else into this experience – no TV, no lotion application, nothing to interfere with the moment. You may only be comfortable with this for a couple of minutes, initially, but it may become easier to feel the benefit for both the caregiver and your loved one as it becomes more routine.
Handholding may be just the break that both the caregiver and your loved one need at several intervals throughout the day. Sometimes you may want to have music playing that your loved one and you enjoy. See if your loved one seems to experience a calming effect. Reflect on the blessing it is to have these shared moments.
Remember the words to the song: “and when I touch you, I feel happy inside” and realize that if your loved one could express himself, that is what he would like to be saying to you.
Our Dayspring support group meets on Zoom twice a month, on the first and third Mondays, from 10:30 – noon. We welcome all people who are caregivers of someone with dementia. By “caregivers”, we mean anyone who cares about a person with dementia. We have found that discussing our situations in a safe and loving environment can help. For the Zoom link, please email Pastor Shirley.
Why do people with dementia act that way?
Years ago, if an older person became forgetful and confused, they were usually labeled as “senile.” The term later became “organic brain syndrome.” This term, sometimes shortened to OBS, acknowledged that there was something physical that was causing mental and cognitive changes. The term we hear now is “dementia.” Dementia is an umbrella term that includes Alzheimer’s Disease as the most prevalent dementia. Dementia, including Alzheimer’s, can be accurately diagnosed these days by qualified professionals.
People with dementia may be exhibiting behaviors that are concerning to others. There are not absolute symptoms, as each person’s situation is very different, but there may be commonalities.
The person may ask a repetitive question, they may lose the ability to sequence simple tasks like getting themselves dressed, they may develop suspicious feelings and lose trust in others. So why would they act that way?
A repetitive question like “what day is it?”, “what should I do now?” or “where is Bob?” can wear a caregiver out. Keep in mind that a person with dementia keeps returning to the underlying concern (“what day is it?”) but has lost short term memory, so that the answer never really satisfies their question—the answer does not “stick,” so the question keeps cycling back. This is not intentional but rather is a consequence of their dementia.
How should we respond to these repetitive questions? We can try writing down the answer so that our loved one can refer to it, but if that does not work, simply answer with a short answer. It is tempting to give long explanations to the person, but that is a frustration to both of you. Since your loved one’s memory may have lost the ability to process logic, providing logic will not be useful.
Why does a person with dementia sometimes get cranky? Quite possibly it is due to fear, although he or she cannot express that they are fearful. Fear results when the person begins to realize that he or she cannot do things that used to be simple. There is now a dependency that was not there in the past. It is a fearful situation when a person realizes that they can no longer remember or communicate, and that fear may be expressed as anger or suspicion. I sometimes visualize that people with dementia, especially advanced dementia, feel like they are suddenly living in a strange place where they are the only ones who cannot understand the language being spoken around them. It would be a terrible feeling.
When we care about someone who has symptoms of dementia, we must remember that their behaviors may be frustrating to us, but they are not willful. The behaviors are as result of the disease process that is robbing them of their former abilities. Our loved one cannot express feelings or fears or frustrations as he or she did. Our role is to try to understand, and to respond with patience and compassion. Answering in a calm manner and a gentle voice will provide reassurance and support.
So, why do they act that way? They have not been given a choice. They are doing the best they can do. But we have choices in how we respond, and we can be kind.
What is Emotional Memory?
The most recognizable characteristic of dementia onset is a change in memory. Early dementia exhibits difficulties with word finding, remembering how to do familiar tasks, forgetting appointments and time schedules, and lacking awareness of taking medication or eating meals. The person may get lost trying to find a place that they have known well. Their appearance may change as a result of neglecting hygiene or forgetting how to dress appropriately. Losing items may provoke fear that they are being robbed. They may become more isolated as conversations become too overwhelming.
But one element of memory that seems to stay intact is the demented person’s Emotional Memory.
Emotional Memory provides a sensitivity to their caregiver’s feelings. A great deal of the caregiver’s feelings are conveyed nonverbally. A caregiver’s stress and frustration may be conveyed in a tone or volume of voice, posture, or impatience on the caregiver’s part.
Caregivers can be suffering from self-neglect in their taxing role of caregiving. So what strategies may be helpful?
An awareness of Emotional Memory in the loved one with dementia is a start. As a caregiver I can make efforts to keep my voice just loud enough to be heard, and try to use language that is easy to understand. I can use phrases that encourage, rather than criticize. I can be patient for my loved one to process what I say, and wait for replies even if that takes a while. I can repeat without shaming my loved one. I can structure my body language to convey gentleness and support.
In order to do this, caregivers cannot be running on fumes from providing more care than they are prepared to give. A caregiver needs respite from responsibilities and time to recover from the demands of caregiving.
You and I may not be providing care to someone with dementia right now, but we most likely know someone who is a caregiver. Those caregivers could use some encouragement. Providing a listening ear via a phone call, an offer to run errands, dropping off grocery items or a snack to a caregiver may give him or her the support needed to continue doing “the toughest job they will ever love”—providing care to someone they love who has dementia. I wonder how much impact it would have if every caregiver could feel supported and loved in these ways?
What causes Alzheimer’s?
Information from the Banner Alzheimer’s Institute says that the neurodegenerative disorder, Alzheimer’s, gradually becomes evident when abnormal deposits of proteins form hard plaques and tangles throughout the brain, causing neurons to die and the brain to shrink. The brain has begun the process years before any symptoms appear.
Alzheimer’s is the most common type of dementia, and there are some risk factors that may contribute including:
- Age. Most people diagnosed with Alzheimer’s are 65+ years of age. (Early onset Alzheimer’s occurs in the 40’s and 50’s but it is very rare.)
- Gender. More women than men have Alzheimer’s.
- Heredity. If you have a sibling or parent with Alzheimer’s your risk for developing it is slightly higher.
- Heart health. Older adults with coronary artery disease or peripheral arterial disease have higher risk.
- Chemical exposure. Toxic metals, pesticides and industrial chemicals may increase risk.
As research continues, it is now evident that some things are not risk factors and do not cause Alzheimer’s including aluminum, flu shots, silver fillings or Aspartame (sweetener.) These were suspected risk factors in the past, but Alzheimer’s is not caused by any of these.
Good self-care includes lifestyles that can help prevent Alzheimer’s as it promotes a healthy brain and body. Prevention measures include getting adequate exercise, eating a healthful diet, maintaining a healthy weight, and not smoking. In addition, Banner Alzheimer’s Institute suggests that you reduce stress, maintain social connections, stay active and engaged mentally, and get quality sleep.
Alzheimer’s in late life develops slowly. A sudden onset of cognitive or memory decline may be caused by one of several physical reasons and should be evaluated asap by doctors. These may include medication errors, malnutrition, dehydration, etc. Alzheimer’s is not detected by a single method and does not have a cure, however getting a diagnosis will provide resources to help with the journey.
If you are a caregiver to someone with Alzheimer’s or other dementia, remember that you are not alone. Our support group meets via Zoom on the first and third Monday of each month. Email Shirley for more information.
Dementia and Our Five Senses
While doing the complicated dance of being a caregiver to someone with dementia, we may not think much about the changes in our loved one’s senses and the affects of these changes.
An older person with dementia has a diminished sense of smell. Because of that, he may not realize that his cat’s litter box is full and is stinking up his house. She may not smell that a dishtowel was left on a hot surface and is ready to burst into flames.
Diminished sense of smell also diminishes the sense of taste. Food in the refrigerator may be kept too long and is no longer safe to eat, but someone with these sensory limitations may accidentally open the door to food poisoning. Due to the loss of taste, a person with dementia may be loading on salt, trying to find the satisfaction with something he can taste. It is a good idea to observe these things, and if you are helping to prepare food for your loved one, gently ask questions as you try different or additional herbs and seasonings to make food tastier without increasing salt (which can interfere with many medical situations.) These deficiencies often lead to a loss of appetite, and your loved one may lose interest in eating, leading to weight loss and weakness. A caregiver may have to be creative in providing many small “meals” per day with a variety of nutrients. Finger food may be preferred by your loved one. People with advanced dementia will frequently develop a heightened “sweet tooth” and while refusing most things, will eat an entire plate of cookies or carton of ice cream if it is available. A caregiver may need to limit the sweets on hand, if it is a problem, and only have small containers of sweets in the house.
Vision changes usually include cataracts and often macular degeneration (which limits central vision) or glaucoma (which limits peripheral vision.) Vision needs to be evaluated to be treated or corrected. Having adequately corrected vision not only means your loved one will be able to enjoy some of the things that require vision (TV, handwork, reading, etc.) but also is very important for safety. A person who cannot see is far more likely to fall. Mobility and confidence need vision. Before taking your loved one for a vision assessment, ask about the eye doctor’s experience with older patients with dementia and ask about the methods used to evaluate their vision. If you are not comfortable with the experience the eye doctor has had, explore other options.
The audiologist assessing hearing loss should also be well versed in assessing hearing acuity for people with dementia. Hearing loss starts early in life (by age 30) and usually changes slowly. Loss may be accelerated if your loved one has been in loud noise environments, or if there is a genetic hearing loss that is in one’s family. It is very typical for people to deny their hearing loss, even though it is very evident to others. Also, caregivers must be aware that it is challenging for someone (even without dementia) to adjust to hearing aids. He or she may have hearing aids in a drawer because the adjustment was unsuccessful, so they are never worn. The price of hearing aids is sobering as well. An audiologist should be willing to refund the cost of the hearing aids if the adjustment period is not successful, but there will be some cost for the fitting, hearing molds, etc. If your loved one is not willing or able to use hearing aids, the caregiver may need to alter the living environment to limit sounds that are distracting and confusing to a person with dementia. Background sound from TV, radio or even music may be overwhelming, and should be limited. Your loved one may benefit from headphones that will allow him or her to hear the TV without it blasting others in the home. The loss of one’s hearing is even more isolating than vision loss, because she or he cannot participate in conversations. In addition, definitive studies have shown that uncorrected hearing loss will exacerbate cognitive loss. These studies help to identify the importance of doing all that is possible to correct hearing loss.
Lastly is the sense of touch. It is often said that older people suffer from touch deprivation. I am afraid that in these days of Covid isolation, their touch deprivation has been multiplied. This is sad, because of all the senses, the sense of touch may be the best preserved. Seeing a baby or child, an older person will reach over to touch the soft, smooth skin. And with dementia, words may become confusing, but holding the hand of a loved one has unquestioned meaning. A person with dementia needs the reassurance of a touch, a hug, or a few minutes of quiet snuggling. Until we are safer from the threat of Covid, this will be challenging for some caregivers who are not able to physically visit their loved one.
Join us for our Zoom meetings on the first and third Monday of each month, from 10:30 to noon. Email Pastor Shirley for more information or for the Zoom link. Everyone who cares about a person with dementia is a caregiver. If you are aware of someone in this caregiver role, please pass the contact information to them. I look forward to seeing you on Zoom.
The Question Every Caregiver Needs to be Asking
There are so many challenges to being a caregiver. We want to provide care for someone we love, but there are days when the challenges are overwhelming. We ask ourselves “how did it get to be this way?” and we see no alternative to accepting the stressors that come with caregiving. Our role usually develops over time, and morphs from one we gladly take on, to one that feels nearly impossible.
But we may be forgetting the question that every caregiver needs to ask. That question is “Can you help me?”
We become so accustomed to doing everything that needs to be done, that we accept our level of exhaustion—both physical and emotional. Neglecting our own needs has become our new normal. We do not ask for help because we have grown to accept the level of involvement our loved one needs.
The other reason we may fail to ask this question is that asking for help is difficult. We gladly offer help to others without hesitation. Pre-pandemic we may have volunteered to help total strangers, as well as made ourselves available to help people in our communities and friendship circles. Yet there is a reluctance to ask for help for ourselves. This reluctance may set us up to block any possible sources of help to supplement our caregiving.
Help is available in both formal and informal ways.
Formal help may be hiring an agency to have a caregiver to provide some needed respite. Respite time may make it possible to have a medical appointment for ourself. We may have an opportunity to go to a store, or a hair appointment, or something else that has been on hold. A caregiver may want to use the respite time to relax and read a book, watch a TV show or even take a nap, knowing that everything will be taken care of for our loved one.
Informal help is asking for help from someone who is not a professional caregiver—a friend, family member, or a member of a social circle. Other family members may see what you do, but they do not realize that you need some help to do everything. They will likely be very willing to help if only they are asked to do so. It is so worthwhile to ask a family member to take your loved one to a routine medical appointment or to come and spend a couple of hours with your loved one. You may also want to think about what friend might be able to come and spend a couple of hours with your loved one to allow you some much needed time off. If you cannot feel comfortable with leaving your loved one, you may think about asking others to run those errands that have become problematic.
The most difficult part of these is to allow yourself to start thinking of ways you can be supported, either in formal or informal ways. And the hurdle that follows is to visualize and practice asking the question: Can you help me? Try it; it does become easier once we break this barrier.