Living with someone who has dementia is like the movie Groundhog Day. For those of you who haven’t seen this movie I recommend it as a reality check. Bill Murray plays Phil Connors, a weatherman, annoyed at having to report on Groundhog Day in Punxsutawney, yet again for the fourth year in a row. To his dismay he wakes up the following day and it is Groundhog Day again and again and again. The same events occur, the same conversations are had, the same people are present. As the main character Phil Connors says, “What would you do if you were stuck in one place and every day was exactly the same, and nothing that you did mattered?”. As Dementia care givers that question can really resonate.
Do you feel stuck in the same place?
Are your days the same?
Does what you do matter?
I think we all can learn from Bill Murray’s character in this movie. After reliving the same day multiple times he decides to take advantage of his unique situation and build on it. Initially he cannot believe this repetitive day is happening and resists. When he eventually accepts that he will re-live the same day over and over. He uses the opportunity to acquire new skills – piano playing and ice carving among them, develops new relationships and soon becomes the most popular man in Punxsutawney. How many times he relives the same day is anyone’s guess. The important take away here is that he relives the day better each time once he accepts that it is happening.
Dementia is difficult to manage 24/7 when you have the same conversations day in and day out. Perhaps the thing to focus on is what you are doing better today than you did last year.
I vividly remember leading a support group where one woman stated that her husband tells her she is getting easier to live with. This very intelligent and very well-spoken woman, who had been married for over 50 years, stated with a grin on her face, “He only thinks that because I have learned not to argue or correct him, since it doesn’t work anyway. After all you can’t ever win an argument with someone who has Dementia. Now he finds me very agreeable!” She learned how to change her behavior to accommodate what he needed and lowered her own frustration by doing so. In my mind she always wins!
These are the things to focus on. In what ways have you as a caregiver have improved? The things you have learned since the diagnosis. The quality of life you give daily to the one you care for. Don’t underestimate what you get done – it is more than you can imagine. You are the key to their successful living day-to-day.
One of the blessings of repetitive conversations and activities is you always get an opportunity for a “do-over”. Take advantage of that. Make a promise to yourself to continually improve by trying new ways of doing things and new approaches to problems as they arise. Don’t focus on the “failures”, “mistakes” or problems, each one is a chance to make things better both for you and the loved one you are caring for.
Depression is not the easiest thing to detect in someone especially when they don’t want to let you in.
The typical symptoms of depression are:
Eating too much or too little
Sleeping too much or too little
Change in mood
Loss of interest in activities they were previously involved in
Difficulty performing daily tasks
Difficulty making decisions
Many of these symptoms are also symptoms of Dementing illnesses . I have seen people with Dementia forget to eat or forget that they ate and eat again. I have seen someone with Dementia lose interest in activities that used to define who they were. Withdrawal often occurs in Dementia because the person is aware that they are not able to keep up with social demands and it is easier and less stressful to stay where they feel safe in a familiar place.
Depression signs and symptoms in someone with Dementia are even more difficult since all behavior is communication when a person struggles with memory loss. Misinterpreting the behaviors of the person with Dementia by those around them is common. It is really important for you to consider this as a possibility if all other options have failed to decide the cause of behaviors. Unresolved anger, agitation, restlessness, sadness or lethargy just might be from depression they cannot express.
There was a woman in the Dementia unit I worked on that most of the staff did not want to care for. The staff reported that she was consistently nasty and uncooperative. Unfortunately this woman came from another facility where she had been over-medicated for such behaviors using antipsychotics and anti-anxiety meds that she was no longer on. When I suggested having our Psychiatric provider see her there was a lot of pushback from the family, understandably so after their previous experience that had left her sleeping almost continuously. It took months to work with this family and talk about limits for the medications and reassurance that we would “start low and go slow”, the mantra of Geriatric psychiatry. We finally started her on a low dose antidepressant and both the staff and family could not believe how different she was. This woman who was nasty and difficult to deal with had a much improved mood which made her more cooperative and easier to work with. She rapidly became a much-loved favorite of the staff.
Not all stories go this way. Sometimes a medication is tried and doesn’t work or has an unintended side effect that makes it an undesirable option. This happens with all medications, not just psychiatric medications, for all treatments. Often even blood pressure, diabetic or pain medications also are best-managed through trial and error. We start out and assess the results and adjust medications as indicated based on what is observed. I do want to urge you to consider the use of antidepressants for your loved one if their behaviors have changed significantly simply because they often improve the quality of life for the person.
How do you tell if a person with dementia is depressed?
For a person to be diagnosed with depression in Alzheimer’s, he or she must have either depressed mood (sad, hopeless, discouraged or tearful) or decreased pleasure in usual activities, along with two or more of the following symptoms for two weeks or longer:
Social isolation or withdrawal
Disruption in appetite that is not related to another medical condition
Disruption in sleep
Agitation or slowed behavior
Fatigue or loss of energy
Feelings of worthlessness or hopelessness, or inappropriate or excessive guilt
Recurrent thoughts of death, suicide plans or a suicide attempt
I hate News Years resolutions. Inevitably they fail and you feel worse than if you hadn’t made any.
This year I encourage you (and myself) to forgo the annual resolution and view each day as a mini new year. There is much less chance of the proverbial “failure” if you live one day at a time and give yourself 24 hours to make it right.
I do confess though that setting goals is a good thing to do so you know how to focus your day. So I am going to suggest a few achievable goals that can make things easier for you
Goal #1 – Ask for help.
All of us reach a point where we are in over our heads and we all instinctively know when that is. Some of us can tell by loss of appetite or increase in appetite (comfort eating), some of us can tell by constant fatigue accompanied by insomnia, some of us can tell by our unprovoked irritability and lack of patience. When those moments arise you need to have someone or more than one someone you can go to for help. Help can mean staying with your loved one so you can go out or taking them somewhere for a day so that you have some time alone to recharge
One of the best things you can do is make a list of things you would find helpful and keep it on your refrigerator in your wallet, on your smart phone etc. whatever works for you, so that when someone asks you if there is any way they can help you can ask for specific things that are helpful.
Would you pick up our groceries?
Can you stay with him/her while I go to appointments for myself?
Would you make us a meal?
Can you take him to the barber/her to the Hairdresser?
Would you help me drop off and pick up my car for service?
Can you take them out for lunch once a month?
Goal#2 – Make a contingency plan.
What will happen to your loved one if something happens to you? I am a strong believer in the philosophy that one should prepare for the worst and hope for the best. Create a back-up plan. There are few guarantees in life so if you should become ill or unable to care for your loved one you need to have a plan in place to make sure they are protected. Such a plan would appoint someone to take over the role of caregiver in your absence. This could be a friend, a relative or it could be a facility placement for respite care. Regardless of which it is you need to research, ask and tell those involved that they are part of your plan and be sure they will step in for you if the need should arise
Goal #3 – Follow up on your own health
Sometimes the need for goal#2 can be averted by this one! It is really important for you to get your annual check ups and address your health concerns. Ignoring your own health can bring things to a crisis especially of you have an issue that is reversible with treatment but left untended causes great damage and has long-term effects. Head this off at the pass by making appointments ahead of time and scheduling someone to stay with your loved one while you go. Neighbors, relatives and church members are a good place to start if you need that kind of support.
As you move into 2017 at the end of this week think of this coming year as a gift. Another year your loved one is with you. Make the best of your very difficult situation by making choices that protect you both.
“Write it on your heart
that every day is the best day in the year.
He is rich who owns the day, and no one owns the day
who allows it to be invaded with fret and anxiety.
Finish every day and be done with it.
You have done what you could.
Some blunders and absurdities, no doubt crept in.
Forget them as soon as you can, tomorrow is a new day;
begin it well and serenely, with too high a spirit
to be cumbered with your old nonsense.
This new day is too dear,
with its hopes and invitations,
to waste a moment on the yesterdays.”
―Ralph Waldo Emerson
Today is Winter solstice. Winter Solstice is an astronomical phenomenon marking the shortest day and the longest night of the year.
Walking with someone you love through this progression of dementia can feel like a long dark night. Sometimes it is easy to get caught up in the negatives, the pains, the inconveniences and the loss. On this longest night I urge you to think about those things. Process what has happened in the past year, past month, past week maybe even the past 24 hours that has put you in a place of discouragement. If you don’t recognize these emotions and experiences they haunt you in the back of your mind all year-long. They come and go but never really leave.
After you think on the darker things the darker moments I encourage you to think on the light. The good things. The things you can laugh about. Light dispels darkness. Here are some light-giving things
Focus on the abilities of your loved one that remain present in this process
Focus on the value of the past experiences you have shared with your loved one
Focus on the things you can change – your responses, your attitude, your routines
Focus on the good
Promise yourself to follow this darkest night with a positive day tomorrow.
This isn’t easy and I am not being trite or belittling the struggles of daily caring for someone with Dementia. Dementia is a very difficult progression of symptoms that leaves caregivers feeling frustrated and out of control. But despite the situation we find ourselves in we all have control of one thing, ourselves. You are the only thing you can control.
Your choices in how to respond to the mistakes your loved one makes.
Your choices of how to react when they ask the same question for the 50th time that day.
Your choice to be present with them in this process and still see them as a human being and not as a problem.
These things are hard to wrap our heads around in a society where we want control. Where we want to have the power to change the world around us. It is good to hope and dream but it is also good to reflect and evaluate. Where are you this longest night? Are you in the dark? Are you holding a light for your loved one who is in the dark?Are you the light in their very dark days and nights?
You are in a unique position and you alone can make a choice about how you will walk through this dark night.
It’s hard to have dinner conversation with a person who has Dementia unless you have a plan. I would recommend using my latest Memory Book Page as a starting point. Answer the questions yourself as a part of the conversation and see what participation that may trigger. Even if it doesn’t start conversation on their part it may help you to ask them questions that they can answer. Maybe everyone at the table can share their favorite Thanksgiving food, memory or thing they are grateful for. These are all-inclusiveconversational topics even for someone with Dementia.
How can you be ready for the holidays when you are living with or caring for someone with Dementia? The best way is to think through your holiday expectations.
What do the holidays mean to you? What do they mean to the person you are caring for? Are you looking for Norman Rockwell perfection or are you looking forward to spending time with your quirky friends and family?
Whether you are caring for someone with dementia or not the thing that makes the holidays stressful for many of us is our unrealistic expectations that we somehow think define the holidays. The above picture is what we aspire to when in reality that is not at all possible for the majority of us for a variety of reasons. This year I would encourage you to let go of those expectations and redefine holiday success for you and your family.
What does holiday success look like?
Expectations are set ahead. Prior to the day speak to your host/hostess, you might say something like. “You know since (_______)has Dementia and this might not work as well as we are used to. I just want you to know that depending on how things go we may be leaving early. Please don’t be offended I want to make sure that (______) has a good time but is not overwhelmed by too much stimulation. Thanks for understanding. I really appreciate that we were invited to spend this holiday with you.”
Introductions. If you have Dementia and you are seeing people you do not recognize it can be confusing. Something as simple as everyone introducing themselves to each other can make things much more comfortable. It is a small thing that provides a feeling of inclusion.
Telling stories about holiday traditions and mishaps from years gone by. Sharing our memories of past holidays can trigger memories even for those with memory gaps. I remember watching the face of residents in the memory facility when I would tell them stories of how my oldest daughter used to make the other one stay up and sit on the stairs to wait for Santa when all the younger one wanted to do was sleep! I could in their faces the imagining what it would feel like to be one of those girls on the stairs waiting. Shared stories and laughter provide a sense of belonging.
Paying attention to the signs that the day has been stressful enough and it is time to go home. We would all do well to pay attention when our bodies and minds have had enough. When someone with Dementia gets tired from too much stimulation it can manifest in a number of ways. They may just fall asleep. They may start behaving oddly and saying odd things that do not fit with the time or place. They may repeat themselves more than usual or they may ask to go home. Make your schedule loose enough that once the meal is over if your loved one needs to leave they can. If you are hosting the meal then let them lay down for their typical afternoon nap rather than expecting them to remain with the crowd. Whatever it takes to keep the routine as normal as possible.
Being prepared for potential problems. If your loved one is in a facility and normally taken to the bathroom every few hours that routine should be followed when they are out. ( Extra incontinence products and a change of clothes can avert a disaster as well) If social gatherings cause them anxiety then they should take whatever “as needed” anxiety medication they are prescribed prior to the event. If they do not recognize all the food items being served it is good to mention what each thing is when it is passed down the table and how you like to eat it. (i.e. “This gravy is delicious on the mashed potatoes”) Social cues are likely no longer enough and must be accompanied with words that simply state what to the rest of us may be obvious but without making a big deal about it or making the person with memory loss feel inadequate.
Holidays can provide a time for you to help the rest of the family understand where your loved one is at in this process in a loving and supportive way. We all learn best by example.
“It is a miracle if you can find true friends, and it is a miracle if you have enough food to eat, and it is a miracle if you get to spend your days and evenings doing whatever it is you like to do, and the holiday season – like all the other seasons – is a good time not only to tell stories of miracles, but to think about the miracles in your own life, and to be grateful for them, and that’s the end of this particular story.”
― Lemony Snicket
One of the hardest things for caregivers of those with dementia is planning ahead. To plan ahead you need to project what things will look like in the future and the future doesn’t seem too inviting when you are in the midst of a process that is not reversible.
It is really important as a caregiver to get all your ducks in a row
Life however is easier if you do a bit of preparation while you can. This means looking at all your legal papers and updating them if needed.
Legal planning should include
plans for future healthcare and potential long term care
plans for healthcare decisions and end of life choices
plans for finances and property that they own
naming an agent/POA to speak and make decisions on their behalf
People with Dementia and Dementia related illnesses can live for quite some time with limitations or disabilities that increase over time. As Dementia progresses people lose the ability to communicate as they once could. This is why it is important to clarify their expectations for their own care as early after diagnosis as possible. I would even encourage people without a dementia diagnosis to do this kind of planning for their future care. In the world of healthcare this is called Advance Care Planning
Quality of Life is an important consideration as these questions are asked. Issues of tube feedings and other Medical Interventions can be addressed ahead of time so that an individual’s personal preferences can be followed when they can no longer discuss such complex topics. I would encourage you do some research on End of Life options as you make these decisions.
The following are website resources that may be helpful
Experts describe an individual in the final stages of dementia by these signs
Inability to independently eat/feed themselves
Inability to ambulate independently
Inability to communicate with words
Inability to care for their own personal needs
Increased vulnerability to infections
Lack of legal papers that indicate who is responsible for healthcare decisions and financial decisions can be a big issue especially if you have a person with dementia who can no longer make decisions for themself. While your family member or spouse that you are caring for is still able to sign forms appropriately update their legal documents to reflect their choices of how they want to be cared for and what will happen for them financially. Visit your lawyer and update wills, advanced directives and POA documents. If you wait too long to do this you may end up with no decision making power. If you know them best and can carry out their wishes to the best end for them you need to protect that part of your relationship and their dignity.
“No one ever told me that grief felt so like fear.”
― C.S. Lewis
One of the aspects of Dementia that tends to be overlooked in managing the day-to-day care of our loved ones is the ongoing grief process that accompanies this disease process. It doesn’t really matter what kind of Dementia you are dealing with there is a continual process of loss both for the individual with the disease and the caregivers.
There is a widely accepted model of grief by stages developed by Dr. Elisabeth Kübler Ross in 1969. While not everyone experiences all the stages most of us experience the majority of them as we grieve. We also do not always experience them in order. This is not a formula it is a guideline for understanding.
The Stages of Grief are as follows:
Think back to the first time you noticed symptoms in your loved one and how you probably tried to rationally explain away what you saw until it was so obvious that other close family members noticed. It may have been the repetitive conversation, forgetting how do something they have done everyday of their life, inability to express themselves etc. The accompanying feeling for them is frustration and for the caregiver it is often horror and shock. No one wants to accept this as reality so denial steps in to save the day!
“It’s not fair!”
“This is not what I signed up for”
Of all the people you know why does this awful thing have to happen to you!? You feel angry at the individual with the disease, at yourself for not doing something to prevent this, at God for allowing it to happen, at everyone else who goes about their day unaware of the crisis you are living through. Anger is a normal part of grief. It doesn’t make sense. It isn’t rational and it doesn’t have to be. It is about the feelings. The scary part of anger is what we do with it. Anger can be the most destructive stage of grief for the relationships around us. During this period of time you need to find someone to let this out with verbally so it doesn’t show up in other ways. This may be a counselor, therapist, pastor or friend. You need someone to listen to you, and not judge your feelings.
We all know about the bargaining thing. We have conversations on our heads that border on magical thinking. We desperately cry out to God to fix our loved one and put things back the way they were. We are looking for easy answers. We promise to do all kinds of crazy things if only….
Bargaining is not bad, it actually provides temporary escape and hope and allows time to for you to adjust to your new reality.
Depression occurs when reality really sinks in. This is the new normal. There is a sense of hopelessness, sadness. You may experience decreased sleep and decreased appetite. During this stage you may not function at your best capacity because you are distracted by your grief.
This is the place where you are accepting reality and the fact that nothing can change the reality. Your loved one has dementia.This does NOT mean you are okay with the situation. IT merely means that you are learning to move on and function in the day-to-day of this new reality. According to Elisabeth Kübler Ross this is the final stage of healing. Unfortunately for those walking the journey of Dementia with their loved ones the final stage is often a long way off. Grief in Dementia is different.
When someone has dementia they go through the process of a series of losses. Some small and some huge. Not all people with Dementia lose the same functional abilities and they certainly don’t always lose them in the same order. The common denominator with all people who have dementia is that the losses continue. They do not stop and so the caregiver goes through this grief process over and over to varying degrees with every loss whether it is large or small. It is not only okay to grieve these losses it is necessary and healthy. Allow yourself to process them as they happen and you will be a better caregiver and a better person.
It is also important to recognize that your loved one with Dementia experiences grieving too. While they may not always recognize what is happening to them there will be moments of clarity when reality hits and they experience anger, depression or denial. Recognize this for what it is and allow them time to grieve without thinking they are “being difficult”. Validate their feelings. Show them that you care even when they are upset. Processing your own grief will help you to be prepared to help them process theirs.
Grief is hard. The somewhat good take away from this topic is that you have a small idea of what is coming. My mother in law had dementia and she died in May a year ago. Over the years of her disease we lost her little by little and we grieved those losses along the way. One of the things I learned as we went through the funeral and the family grief process was that in the disease we kind of lost her. Her funeral was a celebration of who she really was without the disease. It really did make it more of a celebration of her life! sarah-w-hedrick
We are all human so we are all terminal! That gives us a bit of a reality check. This disease does not make us or our loved ones any more terminal than we were before, it merely provides a window into the process of grief as we slowly walk this road together. It is not kind and it is not easy but it does give us opportunity to remember that we must live life in the moment and not miss it going by. We recognize our limited time with a loved one who “knows” us and it makes that time all the more precious. This also allows us the opportunity to recognize our own “stuff “, the issues we have not resolved in our own life. Take time now to seek reconciliation in relationships, counseling for your problems, therapy for anxiety or depression if needed. These are things that not only hamper your quality of life now but they cause issues when someone has Dementia and they no longer have the ability to do the necessary work for healing. I am not predicting that you will get Dementia but I am encouraging you to learn from the process that others have gone through and live life to the fullest now!
One of the greatest fears of family members of someone with Dementia is that they too may suffer from the disease in the later part of their life. I personally believe this can be a valid fear since the risk of Dementia is higher for each of us with every passing year.
In the past my husband has misplaced something, (i.e keys, wallet, etc) and wondered aloud if he was getting dementia. I would laugh and say,”No, it has to be a change and you have been misplacing things like this ever since I’ve known you!” So how do we decide if there is an issue that needs to be investigated? Is it a problem to walk into a room and forget why you came there or is that just a sign of too many things to do swirling in your brain and you lost your focus before you arrived? Can you go back to where you started and remember why you went there in the first place? If you can that is not likely a symptom of beginning Dementia.
The Alzheimer’s Association did some work to provide individuals with a checklist of 10 warning signs that someone actually has early symptoms. Clicking on this link will take you to that checklist. 10_signs_checklist so you can print it off and look at it with more detailed explanations. The list is as follows:
Take the time to look at the list. Don’t ignore symptoms. You may not have dementia but you may have a thyroid problem that is clouding your thinking. If you know something is different go to your doctor and get it checked out don’t ignore it. Some of the things on this list can be signs of stroke, medication side effects, depression, anxiety, stress etc. Don’t add to your stress as a caregiver by ignoring your own symptoms. You just might walk away from your doctor appointment with peace of mind! Sometimes our fears create more problems than they prevent.
Some of you are probably thinking how can I go to an appointment? Who will stay with my loved one while I do? Well I have a few thoughts on that too. Most local areas have senior centers, find an activity that your loved one enjoys and sign him/her up. Then spend that time going to appointments you need to do. Or if you are affiliated with a local church or civic organization reach out and ask for someone to spend time with your loved one so you can go to an appointment. Family is also an option. Parents often will not ask children to help and that robs the children of the opportunity to spend time with the other parent while they are still able to connect. ASK! I encourage you to channel some of that “fear generated” energy that causes you to worry about whether you will have dementia into taking steps to limit your own risk.
As caregivers there is a tendency to isolate ourselves . You start to withdraw from things you enjoy because it is a lot of work to arrange something for your loved one and then go do something for yourself. Try it anyway. You owe it to yourself and you will be a better caregiver if you do.
“If you don’t go after what you want, you’ll never have it. If you don’t ask, the answer is always no. If you don’t step forward, you’re always in the same place.”
― Nora Roberts
As family members it is easy to forget that someone with Dementia cannot think the way we do. This makes communication with them one of the greatest challenges we face. When my mother-in-law, Sarah, was in the mid stages of Dementia we thought an easy game to play with her was “Spoons”. This is a card game where there are enough spoons in the middle of the table for all but one player to have one. The spoons are evenly spaced in the middle and the cards are all dealt out evenly from a regular deck. The goal of the game is to get a spoon.http://www.wikihow.com/Play-Spoons-(Card-Game)Each player passes cards one at a time to the left in attempt to get 4 of a kind. The first player who has a set of 4 cards with the same number or face stealthily takes a spoon hoping no one notices. As soon as the other players notice they too take spoons and whoever doesn’t get one at the end of that hand has the letter “s” and it continues until someone has enough letters to spell the word spoons.
Writing that explanation makes me wonder why I thought this was a simple game! Sarah kept missing her opportunities to take a spoon because she was so focused on the cards and getting 4 of a kind. I cannot tell you how many times the phrase, “Mom, it’s not about the cards”, came out of my husband’s mouth. It was a lot. It was too much.
This is a good example of what it is like to communicate with someone who has dementia.
Here are some things to remember about communicating with someone who has Dementia:
Keep them focused on you. They are generally focused on one thing. When you are interacting with them you want that thing to be you and the conversation you are having with them. The place to begin is in helping them focus. Eliminate the distractions. Music, TV, other people in the immediate vicinity, and anything else that takes attention away from your conversation. Remember to give them your complete attention.
Smile. Your best interactions begin with a smile. There is some truth in that line from “Annie”, “You’re never fully dressed without a smile”! When you give someone a smile it reassures them that you are friendly and safe even if they don’t remember who you are.
Keep it simple. Use easy words and simple direct statements. English can feel like a foreign language to someone with dementia even if it is the only language they know. They may feel like they are lost in a foreign country with a language they don’t know even in their own home.
Speak slowly and be patient. At times they may attempt to communicate with you and the words are not coming out right. Or they may hear you and need time to process don’t speak again too quickly.
Show them. Your demeanor, posture and body movements often communicate more than your words. Use your nonverbals to your advantage when you interact.
Never Argue! Yes that’s right. No arguing at all. You cannot win an argument with someone who has Dementia. They are not in your reality. You can redirect. You can distract. You can agree verbally even though you know better. Arguing just creates increased unwanted behaviors and distrust, two things you want to avoid in this process of caregiving.
Approach from the front not the side or behind. You want to be sure they have the best chance of seeing you and hearing you. An unexpected touch or approach can startle the person and they you are off to a bad beginning. You want to connect with them so be sure they can see you before you start talking. It also helps if they are wearing their glasses or hearing aids if they use them.