Alzheimer's disease and the holidays.
The holidays are a time of feasting and family traditions. This is the time of year when we have warm feelings and feel nostalgic. These are the times we reestablish family ties. The holidays are times we create memories and have traditions we cherish for years to come.
For those caring with a family member, with Alzheimer and related dementias, the holidays can be filled with unexpected trips to the doctors or the emergency room. It always happens. It's inevitable. There can be times when our senior family member may show frustration, agitation, or aggressive behaviors.
These behavioral symptoms may develop as the disease progresses. This can have a negative impact for the caregiver and the rest of the family during the holidays. Many family caregivers often stop participating in the holidays altogether. . The holidays are times that can bring increased stress and anxiety, and when you add a loved one who has Alzheimer's disease into the mix, the stress can become too much for both the caregiver, the and the loved one.
You do not need to dread the arrival of the holidays. There are ways you can still celebrate the season. By making adjustments, you can improve your chances of a safe and happy holiday for both you and your loved one.
It may mean finding creative ways to engage meaningfully with each other as a, as the cognitive decline occurs. Let's discuss some strategies to help your family member with Alzheimer's disease diagnosis. Connect with other family members. I wanna address first the difference between cognitive impairment and Alzheimer's dementia.
Both have to do with the breakdown of our ability to think most, think of memory loss as the big issue in dementia. But there's a broad range of thinking skills we use in our everyday life. These skills include our ability to focus or concentrate. Our thinking skills include processing information, speaking, and understanding others, as well as navigating our physical space.
Our thinking skills also include a variety of higher level skills, such as problem solving, decision making, and planning.
Our ability to switch gears as situations or the ability to be flexible allows us to juggle multiple tasks at one time at higher levels of thinking. The ability to inhibit expressing undesirable or unhelpful responses to situations is also a thinking skill we take for granted. I'm gonna give you like a small overview of Alzheimer's disease.
The early stage of Alzheimer's dementia is a condition known as mild cognitive impairment, or M c i. This is a technical term that refers to a decline in our thinking abilities. For some this thinking ability. Or lack of a thinking ability is isolated to the loss of short-term memory to be specific for others.
There are other thinking skills that are beyond age-related changes in the brain. Alzheimer's slowly destroys memory, causes impaired reasoning. Remember, Alzheimer's disease is not a normal part of aging. There are some individuals that have mild cognitive impairment without dementia.
Mild cognitive impairment without dementia is even more prevalent in the United States than the Alzheimer's disease itself. And the reason for that is we have an aging population first time ever. Globally, we have more seniors than youth, and we have a situation where people over 80 start to, to develop mild cognitive impairment.
It doesn't lead to dementia all the time that it can sometimes I have cared for many seniors with mild cognitive impairment over the years.
The biggest symptoms are word finding problems for forgetting to go to important events or losing things often. There may be issues with mobility and some may have a problem with their sense of smell. Interesting. I thought that was interesting, the sense of smell, but I've seen that before where people lose their sense of smell, then they lose their ability or lack of interest in eating.
Smell and eating are very well con. Connect. I'm sharing this information with you because individuals with mild cognitive impairment tend to be somewhat withdrawn in social situations, and this is important to you as you prepare for the holiday season. Ed was a 65 year old man that was married and had eight kids and 20 grandkids.
Holidays were a constant whirlwind of activities. Ed was always the joke teller. He was this outgoing, fun-loving.
His wife told me he no longer talks much, and he prefers to listen. I'm very unusual for him, . He has stopped telling jokes because the grandkids have told him he is repeating himself. Ed has said more than on one occasion that he is unable to keep up with the conversations.
He feels left out and does not enjoy things the way he used to. And I wanna let you know here that a lot of seniors, especially at Ed's age at 65, have hearing problems. So if you have a hearing problem, Get it checked out. Get your hearing aids if you have to and wear them because that helps with your cognitive decline or at least to stop or decrease or prevent cognitive decline.
I hope this helps you understand the challenges, those with mild cognitive impairment face in social situations.
But don't worry, I have some strategies to help you. Now I want to address dementia. This is an umbrella term that refers to a progressive loss of thinking skills. There are over 100 different types of dementia.
In the early stages of dementia, the signs and symptoms will vary depending on the type of dementia. As the disease progresses, the symptoms have similar patterns of decline. The thinking skills become severe enough to inter to interfere with the daily ability to do task, to do just basic tasks that are necessary for activities of daily.
As dementia advances, it impacts a person's ability to take care of basic needs, such as eating, drinking, bathing, dressing, and even using the bathroom. Depending on the type and stage of a person's cognitive ability, a person may experience very different challenges. These are barriers that interfere with the ability to connect with their loved ones during the holidays.
For example, a person with Alzheimer's disease may have difficulty connecting with others during celebrations because they quickly lose information they would otherwise be. Be held in their memory, their short term memory is lost. It's gone. This can lead to a variety of challenges like Ed, who has M C I or mild cognitive impairment.
A person with Alzheimer's may have trouble following conversations. They will frequently repeat stories because they are losing their memory. They will confuse details and events from the. They will also have difficulty finding the words to express themselves in the early stages of Alzheimer's.
These challenges may be subtle and may be a source of frustration for the person with Alzheimer's.
Tom was a 60 year old retired marine. He was an introvert. He was a quiet man that had a very dry sense of humor. Before Tom was diagnosed with Alzheimer's, his family suspected something was different about him. Tom was a biker. He loved his Harley . He loved going out on his motorcycle, and he did it often.
He lo he, he lost interest in riding and he would lose his train of thought when having a conversation. His family thought he was just working too hard and needed a break. Tom went from loving the holidays and going to parties to not wanting to participate in the festivities at all.
In the advanced stages of dementia, your family member may no longer be able to recognize their loved ones. They may start to interact with others. On a more superficial level, many family members tell me that their loved one with dementia seems like a sh a mere shell of their former self. I hear that all the time with Alzheimer.
Especially with Alzheimer's, because they have a flicker in their light for a moment where, they understand and they connect, and that's it gives you hope and that they're going to recover and they don't because the next minute you're looking and there's that blank stare in their eyes again.
That's a tough. Let's talk about those suffering from frontotemporal dementia. This type of dementia creates a whole different set of challenges to interacting with loved ones.
Your family member will have changes in language, personality, behavior, and or motor functioning. Personality can cha changes that can occur because of frontal lobe dementia include impulsiveness, apathy, and indifference, and socially inappropriate behavior. Because there's so many different types of dementia and stages of cognitive impairment, it's important to remember that strategies you choose may depend on the types of challenger your member is facing as Alzheimer's disease progresses.
I think it's important to know that in the beginning, Alzheimer's and other dementias have show different signs and symptoms in the early stages, they all have some sort of memory loss in the beginning. Over time, as they get through the stages, especially starting in the middle stages and later stages in all dementias, they follow a.
So let's discuss the various strategies that you can use to have a successful holiday season. The first strategy is to determine what gives the holidays meaning to you, the family caregiver, and your family member. So many family caregivers are already overwhelmed with the challenges of caregiving, working and juggling other family members.
Some are caring for grandchildren and trying to coordinate holiday events. I suggest that this year you just take a step back, breathe, think about what matters to you and your family member with dementia. What makes the holidays meaningful to. Is there a holiday activity or a special tradition that is more meaningful to you than another?
What is it about each holiday activity that is meaningful? If you could do just one activity this year, what would it be and why? For each activity you have planned, who will it be? As you answer these questions, this will help you to prioritize the most important activities. And thi this is the hard part for many family caregivers because this list will help you let go of the activities that may be a source of undue stress and family caregivers oftentimes wanna do it all, take it all on.
And do it themselves because they don't think anybody can do it as good as they can . But there comes a time in family caregiving you're just tired and you just can't do it, and then you have to delegate. So it's a personal growth experience, but it's a good personal growth experience. Family caregivers often find themselves trying to balance the wants and the needs of the entire family, and there comes a time when something just has to.
That means it's time to compromise. I have family caregivers that really wanna do every tradition and want to have the perfect holiday season. They want to have one more holiday before they lose their family member to Alzheimer's disease or other types of dementia. Those may not be realistic expectations.
There comes a time when things have to be changed and compromises made to decrease stress. And I just wanna, as a side tip here, I wanna remind family caregivers. 63% of family caregiver's die before the person they're caring for does because chronic stress really does kill. Learn to compromise. Learn to delegate your life depends upon it.
It may mean getting creative and flexible as we identify our family members' challenges and work around them so we can look forward to connecting with other family members. If you have an extended family members, it will involve communicating with them your concerns and brainstorming how to make a less stressful holiday season.
You want a holiday season that everyone enjoys, including your family member with Alzheimer's disease. I told you of Ed with a very large family. Many of his adult children lived in the area. They would all come to the family home for Thanksgiving and Christmas. Then they had, they always had Ed take the grandkids out to chop down their Christmas tree.
Then they would have the tradition of decorating, helping kids bake and frost cookies, and they had huge family meals together. The holidays included going to the school events to see the grandkids and what they participated in. The entire month of December was always a whirlwind of HO holiday activities.
It became apparent to Ed's wife that the holidays were going to have to change. New symptoms were developing every day. Ed was withdrawn. He had no interest in the kids or any other types of activities. His memory problems were increasing. Mary could see how, hi, this brain disorder was causing cognitive decline.
Mary Ed's wife called a family meeting to brainstorm the changes in Ed's behavior and his dementia symptoms. The goal of the family member was to determine that the activities were really important to all. Mary gave a task to each adult child and their spouse. The family prioritized task to make the holidays less stressful for both Mary and.
Mary considered every person's abilities and expertise and assigned task. They included every grandchild as well. The goal was to reduce falls and frustration, reduce the risk for falls and frustrations during the holiday times. During the meeting, Mary felt it important to discuss that this is a familial Alzheimer's disease, that the greatest known risk factor for developing Alzheimer's disease is a sedentary lifestyle and developing cardiovascular disease.
She took time at the meeting to encourage everyone to practice a healthy lifestyle. What's good to prevent heart disease is also good for the brain cells and brain. Here are some of the ideas this family made to make the holiday celebration more manageable and more enjoyable in the moment, mary identified one adult child to be the family videographer. There are ma, so there were so many grandkids.
Each of them had a holiday activity they participated in. Ed and Mary always attended this year. The activities would be recorded. One goal identified was how to minimize the distraction since holiday season. Ed's best time of day was in the morning. As the day went on, he fatigued and his word finding problems made communications challenging.
As the day went on, it was decided that each family would come to the family home as at designated times throughout the entire month. Since mornings were best for ed, the majority of the activities would be morning one. Ed was able to enjoy the grandkids holiday activities in his home on his tv. The holiday baking was kept to a minimum.
The decorating activities were spread out over the entire month. Instead of done at one day for the first time, Mary allowed her oldest son's wife to host the holiday. Changes does change does not come easy for anyone. We are creatures of habit. We love our routines and RU traditions. Adjusting expectations is an important way to keep disappointment and frustration from taking over our special moments, but this involves planning.
Anticipating what needs to be done includes considering what could go wrong, then plan how to address that in advance. Here are some tactics that can help you to be more flexible and adjust future expectations. Determine what is realistic. This will help you identify boundaries that should not be crossed before or during the celebration from Mary and Ed from Mary Knew that having all the kids and grandkids at the house over the holidays would cause Ed undue stress and anxiety.
She made her adult children aware that there would have to be scheduled a visits. She asked that each adult child make plans to get their father out of the house and take him for a W ride or a walk. That's a great mood lifter for everyone and getting the sun. Vitamin D is important to get your vitamin D every day to delay or prevent dementia.
Low vitamin D puts you at a higher risk for developing. Little tip there. Mary thought it was important that each adult child have an opportunity to have some one-on-one time with their dad. It was also a way to keep the environment with as few distractions as possible.
They were all given instructions that there were no to be, no controversial or stressful topics to be discussed in front of the family member with Alzheimer's or ED at that time.
Another tip is to plan for what you can. This takes times to identify some potential barriers or problems that could arise. The goal is to try to help Ed connect with other family members storing celebrations, and that's and a goal that anybody that has Alzheimer's disease or, or Dementia.
Is to try to connect with them on a human level and that you try to do every day, not during celebrations, but taking time to identify the potential problems and troubleshooting before the event can help things to run more smoothly. . Here are some areas to troubleshoot. Always anticipate problems with technology.
Oh Lord, yes. For example, you can have difficulty operating a device. There may be poor internet connection. Delays in communications happen limited battery power or needing to charge devices. It always happens. Murphy Law, Murphy's Law always strikes . Try to anticipate sensory problems. This includes issues with poor vision or difficulty hearing.
If you have a family member with hearing aids, make sure that they have a good battery and that they're in their ears and not taking them out. , it happens all the time. The environment and minimizing distractions in the environment is important. This may mean that your loved one with Alzheimer's disease has a quiet place to go when the noise becomes too much.
Daily routines are important plan activities around those routines. Aim to keep holiday activities quiet and relaxed. To reduce the risk factors for developing behavioral symptoms such as frustration or a agitation.
Anticipate your family member may have fatigue, confusion, and or irritability, allow rest periods and calming music. Be prepared for those times when there is a conflicting activity in a daily schedule or routine. This may be anything from an unexpected trip to the ER, to a change in a time and event was planned.
I always recommend that a family caregiver always have an in case of emergency. Bag be packed. This bag will have a change of clothes. Important paperwork, like updated medication list, medical history and allergies, legal paperwork and toiletries for your family member. And if you are a family caregiver, you should have one prepared for you too.
This may have your toiletries as well as the medications you take and maybe an extra phone charger cuz you're gonna forget it when you go run out the door. That way you can just always grab and go and feel confident you have information necessary to be treated in a timely fashion. Here are a few strategies to help you stay present and grounded during the holiday time.
Practicing stress management techniques is so important to do year round. The holidays can be so overwhelming. Different approaches and strategies work for different people. Some common strategies and stress management techniques include breathing exercises, repeating positive affirmations or mantras, visualizing something, calming and or practicing mindfulness.
Whatever you choose, it should be something that makes you form, feel more grounded and what's really important to you and your loved. As you make your way through the holidays, allow yourself to feel what you feel. Anticipate that you will feel a mix of emotions during this holiday season.
You may find yourself laughing one minute and crying the next. Allow your feelings to help you stay in the present. I'm gonna tell you right now, many family caregivers as the disease progresses, especially around the holiday seasons, have anticipatory grief. And that means you're going through your grief process now, and at times when the family member w passes, you don't, you've ha already worked through your feelings and many have a sense of.
After the person passes. So the goal through the holidays is trying to have those meaningful connections with your family member with Alzheimer's disease. Focus on the present, not the future. Below are some tips that may help facilitate meaningful communication. Adapt the conversation to your family members' level of abilities and difficulties.
Make others that will be spending time with your family member. Un understand those expectations are what those expectations are. Make the rules simple. There will be no controversial conversations, or there will be no one discussing any stressful topics. Make sure they know to speak directly to your family member and not to talk down to them in the beginning stages of Alzheimer's or even in mild cognitive impairment.
It's important to speak slowly and clearly. One person speaking at a time is important. Ask specific questions like, would you like some egg nog? and not would you like a drink? And then giving them a bunch of choices. They're not able to process that when talking with your loved one.
With Alzheimer, do not offer more than two options, so it's coffee or soda. They do not have the ability to process the information, at least not in a timely fashion in the early parts of Alzheimer's and mild cognitive. Make sure all family members understand that your family members suffering from Alzheimer's disease has a slowed processing and understanding response, so give them time to respond.
It is important to remind everyone when communicating. Be aware of your tone of the voice and facial expressions. The family member with Alzheimer's has no sense of the future. They are losing their memories of the past, and they are truly living in the moment. So always approach him from the front and have an upbeat attitude.
They will pick up on your stress and anxiety, so make sure you smile, learn to take some slow and easy, deep breaths before and even during the time you're interacting with your family.
They pick up on your feelings, so if you're frustrated, they're gonna feel frustrated. If you're upbeat and happy, they will be upbeat, but don't make it fake because they also sense that just be your authentic self. If your family member is in the later stages of Alzheimer's disease, make sure you tell your other family members that the fam, they may not re be remembered. Tell them to introduce themselves when talking with them. Even if they think they will know them, don't assume anything.
As the memory problems increase. I know it sounds silly and it makes people uncomfortable, but it's okay to say, Hey dad, it's Diane. How are you today? I'm your oldest daughter. . If he goes, yeah, I know , that's okay. But there are times when you'll and make that a habit to do that because there are times when he won't say, yeah, I know, and you'll just face a blank stare.
It's hard. It's a terrible, awful disease. Mary plans separate holiday events for each of her adult children. She had the kids make, huh? This is, I know this is strange, but she, and, but it's necessary. She had the kids make name tags to wear the ca. Grandkids were even taught to tell Ed their names and that's good.
You know what, including the kids is so important. They know something's not right with their grandparent. And it may seem silly to them, but it's okay to tell them, grandpa, our grandma's got a boo booo in their brain, if you wanna talk like that and say, he's forgetful now. So we have to tell them, remind him who we are.
Each family member in Mary's family made a scrapbook of pictures of past holidays and events during the. Remember, long-term memory still may be intact. It depends on the level of deterioration in the brain. Current times will not be remembered by your loved one. So short-term memory is lost in the lo mid to late stages of dementia.
Mary's middle son collected all the old holiday pictures and put them into a digital file. He created a slideshow in an electronic frame for Ed to have a look at throughout the entire year. Mary took time to ask the family members to be aware of Ed's changes in behavior if he showed any signs of discomfort or emotional distress, or appeared overwhelmed or tired or even hungry.
Asked them to use those cues as a sign to adjust their interaction with their father. Now, let's talk about. Children talking about children with dementia. Now let's talk about talking with the children about dementia. Mary and Ed had a huge extended family. There were so many grandkids raging from teenagers to newborns.
Children are far more perceptive than we realized. They may see that something's not right with your family member, but they're not fully understanding the changes that are occurring. Therefore, talking with children about what is happening is important. Involving them in holiday planning can help them make sense of the emotions that they may be feeling.
Children express their emotions differently than adults. Behaviors can often signal that there is something else going on. And I can tell you children and the end stage, lower middle stages of dementia have a lot in common. The behavior changes . Here are a few things to watch for with the kids withdrawing from discussions or activities being short tempered or even more argumentative.
Experiencing physical pain. This is one they, all the kids will have a stomach ache or a headache not being able to tell you what's really wrong with them. If you feel uncomfortable about talking to children about changes in your loved one's disease process, that's okay. Mary and Ed had a family meeting to plan the holidays with the adult children.
It was at that meeting, it was decided that the grandkids be told what is going on. Mary was so worried that she would not have the right words or not be able to answer all the ki questions the kids have may have had. So she assigned her daughter a librarian to explore and investigate books that explain dementia to children at different age levels from the young, younger toddlers to the teenagers.
You wanna approach things on their level so you don't diminish or discount. Level of their age level and maturity. Teenagers always think they're adults. the entire family and grandkids got together at the librarian's house and had story time. , Mary and Ed were not at this event. Mary wanted the kids to have an opportunity to ask questions and not worry about Ed's response.
The key here is to be honest, everyone will have a different perspective. The adult children should be able to chair their discomfort or concerns with their younger children. If the kids have questions, you don't know how to respond, it's okay. Tell them you don't know, but you'll find. Each child will respond differently.
Some will be afraid of discussing Alzheimer's disease. Others are gonna bombard you with a million questions. Allow each child their space and opportunity to express their feelings. Depending on the child, some others may express their feelings in words. Others may express it through their behaviors.
Others may do it in a creative fashion by drawing or pl singing or playing music. Mary was challenged to make the holidays less stressful. She had to change her expectations and identify what her most imp important activities were for her. As Ed's cognitive status declined, she focused on making connections with Ed at his level of functioning. Her goal was also to allow each adult child and grandchild to have an opportunity to have one-on-one interactions. Simplifying the holiday activities. Planning ahead and changing expectations and setting boundaries can help you minimize stress.
This can create a pleasant holiday experience for you and your family member, and the person with Alzheimer's disease or other type of dementia. I'm Diane Carbo with caregiver relief.
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