Staying Balanced While Caring for a Spouse with Dementia: Don’t Stop Writing Your Own Story - IOA Blog (2023)

Staying Balanced While Caring for a Spouse with Dementia: Don’t Stop Writing Your Own Story - IOA Blog (1)One piece of advice stands out if you are caring for a spouse with dementia: Acknowledge and accept that you can’t stay positive all of the time.

Remember that to believe that you can maintain constant positivity is to deny your basic human dimensions. You can’t actually bypass your negative feelings, and if you try to, you’re rejecting a part of yourself. You would only be doubling up on the loss and cause for grief: the memories that your partner no longer shares with you and, now, your own authentic experiences that deserve your compassion.

In this moment, make the choice to be present for the truth of your life, for the parts of you that can be awakened to the uncertain challenges of caregiving and to your own needs and your own vibrant life story. Being whole and successful as a caregiver for your spouse is not about staying unshakably positive; it’s about staying in touch with and staying balanced in your own experience.

Be Awake for the Sorrow—and the Beauty

I’m not going to claim that it’s easy to stay in touch—to choose to feel every difficult moment along with the pleasant ones. From the perspective of Pema Chodron, a Buddhist writer and teacher of mindfulness,

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Of course, the reason why we get caught up is so we can miss the sorrow of life, but then we miss the beauty as well. Once you open, you’re open to the whole thing—both the sorrow and the beauty. This does require courage—to allow yourself to feel what you feel and be with yourself. But it connects you with humanity; you realize your interconnectedness with other people. It’s a whole different experience of being alive.

You’re starting a new chapter of your life. Don’t give in to thinking that just because the circumstances are out of your control, your story is set in stone. There’s always great power in taking a step back to witness what you’re experiencing, whether you’re feeling out of balance or whether you’ve been blocking yourself off from your feelings.

In fact, if you’re ever feeling lost or at the end of your personal rope, sit down with a notebook or even just a piece of paper and a pen. Remind yourself, in a very literal way, that you’re still the one writing your story, and you still have plenty of blank pages to fill with your resonant life experiences.

The writing exercises I’m going to describe below can help to remind you of your personal power and your choice in how you relate to your experiences, moving forward toward positivity.

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Extend Your Care Toward Your Own Life

In your moments of emotional overwhelment, commit to carving out some time to sit down with your pen and paper. Right away, this gesture extends a significant dose of compassion and self-love your way. Here, you can ground yourself in your real experiences and catch yourself before rejecting those unwanted feelings that are still a part of you, no matter what.

On your paper, create three columns and label them “Negative,” “Neutral,” and “Positive.” Now, stop. Close your eyes. Silently tell yourself, “I’m here just for you. I’m here to listen.” Sit there in your unconditional generosity, and when you feel ready, open your eyes and pick up your pen.

Without any order or expectation, let your thoughts and feelings guide the flow of your pen as you list items among the columns. If you’re feeling encouraged by your spouse’s excitement when the grandkids arrived today, write that down in the Positive column. If you’re feeling guilty for taking this time away for yourself to write, put that down in the Negative column. If you notice moments of stillness between your thoughts, if you notice the cat walking across the room, or you notice the simple ticking of the clock, write these things down too—or just make a mark for each instance in the Neutral column.

Making Sense of Your Compartmentalized Feelings

If all you do is get these thoughts and feelings down on paper, you’re still succeeding in reassuring yourself that it’s natural and acceptable to really feel deeply across the spectrum of emotions. If you can also give yourself the gift of some time for reflection, you may find that this awareness practice helps you to:

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  • Put the reality and depth of your feelings into perspective, especially when you’re feeling swamped by negativity and uncertainty
  • Hold space for the positives that now include new, unexpected discoveries and moments that come with your partner’s evolution and that of your relationship
  • Notice the neutral experiences, where there’s space to breathe and freedom to grow through these deep feelings and this new caregiving role

For, as Pema Chödrön explains:

The most important thing is to leave a gap. […] It will change your life because it is very painful to be caught up in the tunnel vision of your habitual patterns. It’s very painful and it limits the potential of your short human life. You’re inside your head all the time and you miss so much.

Does that sound familiar: getting stuck inside your head—perhaps as a defense mechanism against the painful feelings you’d rather not experience? If so, you’ve already been compartmentalizing your feelings, but in a way that doesn’t make room for real life and the whole reality of who you are.

The truth is that in this extensive role as caregiver for your spouse with dementia, you need even more space than ever to feel and to be real and to nurture your sense of self. Those neutral moments you can find to mark down on your paper are what Chödrön is talking about when she says to “leave a gap.” Those neutral moments of stillness and space between thoughts are wonderful assets for you now if you can exercise your awareness of them. In this spaciousness, you can gain perspective on your feelings that now swing in stronger directions than you may have been used to before taking on the role of daily caregiver.

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Honest and Grounded Positivity Moves Us Forward

Sitting down to air out your feelings is also a good reminder that you are still writing your personal story. It can help give you clues about how you to better take care of your own needs and make choices for moving your story forward. After reflecting on the scope of your feelings at present, turn your paper over and begin writing your way forward, listing some of the things you can do for yourself now to maintain your well-being and sense of self.

  • Commit to regular time set aside for yourself, such as these writing exercises.
  • Proactively organize time with family and friends, who can help you to feel connection in ways you may be missing with your partner.
  • Get connected with a caregiver support group; even if you’re experiencing an excess of positive feelings, you still want to give yourself the resource you will need along this journey.
  • Explore some of the more progressive sides of the caregiving role, such as being an advocate for your partner and for yourself and for other caregivers.
  • Consider the adventurous potential in this new chapter as you get to know the new and unexpected aspects of your spouse’s life and personality.

Always having a smile on your face and focusing on what’s going right—that’s only one way of looking at positivity. You can also look at it in terms of moving forward, giving your days a positive charge so as not to get stuck. Choosing to look at only the feel-good aspects of your day may actually be just another form of being stuck; it takes courage and practiced awareness to be fully there for your life.

Even if your partner were not experiencing the difficult transition of dementia, you would still be responsible for the choice of whether to live inside each and every one of your real experiences, or to pick and choose your reality. Your role as caregiver is shining a light on this choice for you. Give yourself compassion as you approach this illuminated space of honesty and vivid experience. It is within this light that there is space for both you and your partner to be truly together now.

You may not be aware of the many supportive resources available for caregivers like you. At Institute on Aging, it is our mission to make those resources known—to support your sense of self during this challenging caregiving journey, so let us know how we can help.

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How do you survive a spouse with dementia? ›

Caring for a Spouse with Dementia
  1. Ask for help. Spouses may be in this together, but they don't have to go it alone. ...
  2. Take advantage of community resources. ...
  3. Give yourself time to learn new skills. ...
  4. Set realistic expectations. ...
  5. Try not to argue. ...
  6. Take a deep breath. ...
  7. Approach intimacy carefully. ...
  8. Get support.
5 Sept 2019

Why do people with dementia make stories up? ›

They might do things, such as making up a little story to fill the memory gap of someone or something they can't remember. Professionals label this gap filling as 'confabulation'. However, this 'story' telling or gap filling does not mean that the person is telling a lie.

Should you always correct a person with dementia? ›

Don't Tell Them They're Wrong About Something: To let the person save face, it's best not to contradict or correct them if they say something wrong. There's no good reason to do that. If they're alert enough, they'll realize they made a mistake and feel bad about it.

Is it better to keep someone with dementia at home? ›

Home care is often recommended by experts through end of life. However, every family and situation is different, so permanent home care may not always be possible. Research shows keeping a loved one with dementia at home helps them be happier and live longer; however, it is most impactful when introduced early.

What is the average life expectancy for someone with dementia? ›

The average life expectancy figures for the most common types of dementia are as follows: Alzheimer's disease – around eight to 10 years. Life expectancy is less if the person is diagnosed in their 80s or 90s. A few people with Alzheimer's live for longer, sometimes for 15 or even 20 years.

What should you not do with dementia? ›

Here are our top 10 "don'ts" when it comes to interacting with someone who has Alzheimer's disease:
  • Don't Ignore Them.
  • Don't Talk to Them Like They're a Young Child or a Baby.
  • Don't Use Terms of Endearment Instead of Names.
  • Don't Assume They're Confused All the Time.
  • Don't Quiz Them.
10 Feb 2020

Do people with dementia fabricate stories? ›

We know now that dementia patients will often make up stories to cope but is making up stories a sign of dementia? Yes, it is. And while it can occur at any stage, it is most common among older adults with mid-to-late-stage dementia and can get worse as dementia progresses.

Do dementia patients have false memories? ›

False memories are common in dementia patients. They're also more common than you probably think among older people who don't have dementia. People with dementia are often said to forget recent events but remember the past. Caregivers can easily imagine their loved ones' memories as a lifetime's worth of photos.

Do dementia patients tell the truth? ›

One of the worst things we dementia caregivers must cope with is the fact that a loved one's brain is broken and may cause them to tell terrible “lies” about us. Neurological damage can cause patients to make up hurtful stories and level false accusations toward their caregivers.

What is the most common cause of death in dementia patients? ›

One of the most common causes of death for people with dementia is pneumonia caused by an infection. A person in the later stages of dementia may have symptoms that suggest that they are close to death, but can sometimes live with these symptoms for many months.

Do people with dementia understand what you are saying? ›

Dementia affects the way a person thinks, which can impact on their ability to respond appropriately or follow a conversation. This could be because they: do not understand what you have said.

Can people with dementia be controlling? ›

Many families find it frustrating to communicate with a loved one who has dementia. The person with dementia may repeat questions over and over or mistake you for someone else. It is important to remember that the person with dementia cannot control behavior caused by their disease.

Should dementia patients watch TV? ›

For men and women with Alzheimer's disease or other forms of dementia, it can be especially beneficial. Watching movies and TV shows can help keep their brain active, which can stimulate positive memories, improve mood, and even increase socialization.

How do you make a dementia patient happy? ›

Do something personal.
  1. Give the person a hand massage with lotion.
  2. Brush his or her hair.
  3. Give the person a manicure.
  4. Take photos of the person and make a collage.
  5. Encourage the person to talk more about subjects they enjoy.
  6. Make a family tree posterboard.

What are carers not allowed to do? ›

Carers should not smoke in service users' homes. Workers must not be intoxicated or consume alcohol while on duty. Carers can't take another person into a service user's home. If they feel the circumstances are exceptional, they'll need to get written permission from their manager to do so.

What are signs that dementia is getting worse? ›

increasing confusion or poor judgment. greater memory loss, including a loss of events in the more distant past. needing assistance with tasks, such as getting dressed, bathing, and grooming. significant personality and behavior changes, often caused by agitation and unfounded suspicion.

What is fatal about dementia? ›

Alzheimer's and Parkinson's diseases, frontotemporal disorders, and Lewy body and vascular dementia all cause a gradual loss of thinking abilities. They damage brain and nerve cells and can lead to pneumonia, stroke, falls, infections, and malnutrition that are often fatal.

At what stage of dementia does death occur? ›

It's important to know that late-stage dementia is a terminal illness and can lead to death. In these cases, the death certificate may list dementia as the cause of death.

What does the Bible say about dementia? ›

Scripture assures us that nothing can separate us from the love of God, not even a dementia that may strip a person of her awareness of God's presence (Romans 8:38-29).

What do dementia patients like to do? ›

Listening to music, dancing, or contact with babies, children or animals provide positive feelings. People with dementia often have excellent memories of past events, and looking through old photos, memorabilia and books can help the person to recall earlier times.

What factors can aggravate dementia? ›

Risk factors you can change
  • Diet and exercise. Research shows that lack of exercise increases the risk of dementia. ...
  • Excessive alcohol use. Drinking large amounts of alcohol has long been known to cause brain changes. ...
  • Cardiovascular risk factors. ...
  • Depression. ...
  • Diabetes. ...
  • Smoking. ...
  • Air pollution. ...
  • Head trauma.
12 Oct 2022

What triggers confabulation? ›

Confabulation is caused by brain damage or poor brain function, but researchers are unsure which parts of the brain are at fault. The frontal lobe or the basal forebrain may be involved. Confabulation occurs with several brain disorders. These are some of the most common.

What is an example of confabulation? ›

Another example of confabulation is when a person with gaps in their memory is asked to remember and describe the details of a past event. Rather than responding that they do not know, the person's mind fills in missing details with confabulated memories of the event.

What type of dementia causes confabulation? ›

Confabulation in Dementia and Other Conditions

Confabulation is most common in people who have Korsakoff syndrome (a type of dementia often associated with alcohol abuse), but it also has been observed in cases of Alzheimer's disease and frontotemporal dementia.

What is the most common type of hallucination for a person with dementia? ›

Visual hallucinations (seeing things that aren't there) are the most common type experienced by people with dementia. They can be simple (for example, seeing flashing lights) or complex (for example, seeing animals, people or strange situations).

Do dementia patients get fixated on things? ›

An individual with dementia may also become confused about the purpose of objects, such as forks or pens. As frustrating as this can be for caregivers, the best way to respond is to stay calm and provide simple, clear, positive answers when the person asks for help.

Should you go along with dementia delusions? ›

See the doctor.

If a person with Alzheimer's is having severe delusions and there is a fear of self-harm or caregiver harm, or if the delusion or hallucination is extremely troubling to the person, it's important to have a medical evaluation to determine if medication is needed.

Do dementia patients get sneaky? ›

Someone with Alzheimer's disease may start rummaging or searching through cabinets, drawers, closets, the refrigerator, and other places where things are stored. He or she also may hide items around the house. This behavior can be annoying or even dangerous for the caregiver or family members.

What causes dementia patients to suddenly get worse? ›

Rapidly progressive dementias or RPDs are extremely rare, but can cause dementia to worsen over weeks and months. RPDs can be caused by complex medical conditions such as Autoimmune conditions, cancer, and neurodegenerative diseases – i.e diseases that damage the body's nervous systems.

Is dementia genetic or hereditary? ›

Many people affected by dementia are concerned that they may inherit or pass on dementia. The majority of dementia is not inherited by children and grandchildren. In rarer types of dementia there may be a strong genetic link, but these are only a tiny proportion of overall cases of dementia.

What are the signs of end of life with dementia? ›

For example, some common signs and symptoms seen in people dying are:
  • profound weakness.
  • a reduced intake of food and fluids.
  • drowsy or reduced awareness.
  • gaunt appearance.
  • difficulty swallowing.
  • bed-bound.
  • needing assistance with all care.
  • disorientation to time or place.

How long does late stage dementia last? ›

However, end-stage dementia may last from one to three years. As the disease advances, your loved one's abilities become severely limited and their needs increase. Typically, they: have trouble eating and swallowing.

Why do dementia patients say help me? ›

This is a common phrase issued by people living with dementia. Many times, they are scared and confused and this is their way of communicating to others that something isn't right, they need help working through the changes and differences they are feeling as their brain isn't working the way it used to.

What is word salad in dementia? ›

Sometimes in speech, they may have what dementia experts call a 'word salad,' meaning a bunch of words tossed together in a sentence that does not make sense to us. But the key is to watch the person with dementia while they are talking to you. Watch their eyes, and be aware of their body movements.

Do people living with dementia communicate with behavior? ›

People with dementia frequently lose the ability to speak as the disease progresses. However, they continue to communicate in other ways – through body language, gestures and facial expressions. When speech is difficult and the dementia is clouding how the person thinks – exhibiting a behaviour is a way of being heard.

What do people with advanced dementia think about? ›

Strange sights, sounds, bodily sensations, environments, people and so on can all feel terribly threatening if we can't identify them or work out what's going on. Given this, it is very likely that people with advanced dementia experience feelings of fear and uncertainty on a regular basis.

Why are dementia patients so argumentative? ›

Does dementia cause meanness? Dementia patients who are mean and aggressive are most likely feeling fear, anger and embarrassment because they have been asked to use skills that they no longer have. When they fail, they may lash out at us.

How does dementia affect spouse? ›

mentally or emotionally present in the same way as before. People with dementia and carers can both feel grief and loss for the person they were, the role they had, their relationship, their shared history and the future. Guilt, as well as anger and resentment, are normal emotional reactions associated with this grief.

How do you not get mad at someone with dementia? ›

Take a time out—brief (such as leaving the situation for 5-10 minutes if possible to let yourself and the person you're caring for calm down) or longer (such as respite time of several hours, days, or weeks) Change the subject or activity if the current one is agitating.

Why do dementia patients not want to shower? ›

Bathing can be a challenge because people living with Alzheimer's may be uncomfortable receiving assistance with such an intimate activity. They may also have depth perception problems that make it scary to step into water. They may not perceive a need to bathe or may find it a cold, uncomfortable experience.

Should a dementia patient have a cell phone? ›

Should a Person With Dementia Have a Cell Phone? The short answer is yes, absolutely. Cell phones are necessary, according to Richard Bowen, a physician's assistant and primary care provider for the elderly at the VA Medical Center in Charleston, South Carolina.

Are photos Good for dementia patients? ›

Photos and photo albums make for a fantastic activity. They easily reduce social isolation and depression, providing comfort to people with dementia.

How often should you visit a spouse in memory care? ›

The person with dementia usually doesn't remember if you have been there for five minutes or five hours. Ultimately it's better to visit three times per week for 20 minutes than once a week for an hour.

What is the most important thing in caring for dementia patients? ›

Allow the person with dementia to do as much as possible with the least amount of assistance. For example, he or she might be able to set the table with the help of visual cues or dress independently if you lay out clothes in the order they go on. Provide choices. Provide some, but not too many, choices every day.

Why do dementia patients fiddle with things? ›

Many people with dementia become restless and may fidget or pace up and down. They may constantly wring their hands, pull at their clothes or touch themselves inappropriately in public. This could be because of pain or discomfort, needing the toilet, a need for more physical activity or problems with their environment.

What are three 3 difficulties that can occur in relationships between carers and the people they care for? ›

Common challenges that carers experience include: health and wellbeing challenges, social isolation and financial hardship.

What is the most difficult part of being a carer? ›

Challenges caregivers face:
  • Isolation – Caregivers can often feel cut off from the outside world. ...
  • Stress – Taking care of a loved one and being responsible for their health can be very stressful. ...
  • Financial burden – Also another form of stress, the financial burden felt by caregivers should not be overlooked.

Do carers do housework? ›

A live-in carer will take care of a variety of tasks for your loved one, from dusting and polishing to vacuuming and doing the washing up, or loading the dishwasher. By completing these tasks, your loved one can focus on investing more of their time into their favourite hobbies.

How do I protect my assets when my husband has dementia? ›

One way to protect your marital assets is to have your spouse create a durable power of attorney for finance. A power of attorney allows the individual to designate someone to make financial decisions for them should he or she become incapacitated. In the case of a married couple, this is usually the person's spouse.

What happens when your spouse gets dementia? ›

Dementia disrupts communication in the brain. In the early stages of dementia, your spouse might have trouble conveying what he or she needs. As dementia progresses, your spouse's brain has trouble identifying what the body needs. This can cause a mismatch between what your spouse needs and how he or she acts.

How does dementia affect the spouse? ›

The family member with dementia usually becomes the family's centre of attention. A Energy is focused on this person. This can lead to other family members, including spouses or other children, feeling neglected. They may become resentful because they feel they are not getting the attention they need.

Can you divorce a partner with dementia? ›

If your spouse has lost the capacity to make decisions as a result of dementia or otherwise, and you feel that your marriage has come to an end, it is possible to get divorced or legally separated.

Can dementia get worse after death of spouse? ›

They found that there was a 43% increase in risk of dementia diagnosis in the three months following the partner's death, with 367 bereaved patients diagnosed with dementia in this time period compared to 254 non-bereaved.

Can you sell your house if your spouse has dementia? ›

As you contemplate her future and the cost of care, you wonder if a person with dementia can sell their home. The answer is yes. But it's essential to understand the complex legal issues related to an individual with dementia's rights, as well as what you can do to help them sell their house.

Can someone with dementia change their trust? ›

Can Someone With Dementia Change a Trust? While trust creation requires a higher level of legal capacity, changing an already established trust is less burdensome. For someone with dementia, amending a trust only requires the same showing of capacity as you need to draft a last will and testament.

What do dementia patients think about? ›

People with dementia think about the same things that any human thinks about — emotions, relationships, daily life, tasks to accomplish, and more. Receiving a life-changing diagnosis of dementia does not strip a person of their humanity and personhood.

What does Alzheimer's do to a marriage? ›

When a spouse is cognitively impaired, marital communication is impaired. As Alzheimer's disease (AD) progresses, language problems increase in frequency – such as searching for the right word, repeating the same word, asking the same question over and over, or substituting one word for another.

Are dementia patients aware of their condition? ›

Alzheimer's disease progressively destroys brain cells over time, so during the early stages of dementia, many do recognize something is wrong, but not everyone is aware. They may know they are supposed to recognize you, but they can't.

Can dementia cause infidelity? ›

In dementia, delusions and paranoia can develop, causing the person to distort reality. So, rather than simply forgetting a loved one's name because of memory loss, dementia can cause the person to believe untrue things, such as the unfaithfulness of a spouse or partner.

How does dementia affect intimacy? ›

Some types of dementia, especially frontotemporal dementia (FTD), can affect a person's inhibitions, their sexual behaviour and their attitude towards sex. A person with this type of dementia may, for example, express their sexual interest more directly or openly.

What conditions can worsen dementia? ›

Risk factors you can change
  • Diet and exercise. Research shows that lack of exercise increases the risk of dementia. ...
  • Excessive alcohol use. Drinking large amounts of alcohol has long been known to cause brain changes. ...
  • Cardiovascular risk factors. ...
  • Depression. ...
  • Diabetes. ...
  • Smoking. ...
  • Air pollution. ...
  • Head trauma.
12 Oct 2022

Do dementia patients argue? ›

People with dementia sometimes become angry and aggressive. As a caregiver, you'll find it helpful to understand why this happens. People with dementia may not recognize their loved ones. They may also have feelings of paranoia or hallucinations.

Can dementia patients be left alone? ›

Many people live alone. Living in a place that is safe, familiar and comfortable is important to everyone, including people with dementia. A diagnosis of dementia does not automatically mean that a person is incapable of living alone. Some people may be capable of living on their own for some time after the diagnosis.

What do you do when your husband shows signs of dementia? ›

You may like to suggest you go with your friend or relative to see a GP so you can support them. You'll also be able to help them recall what has been discussed. A GP will ask how the symptoms have developed over time. They may also do a memory test and physical examination.


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