Impact of Dementia on Spouses
The Caring Generation® – Episode 141 June 8, 2022. The impact of dementia on spouses is significant. Learn how to manage losing your best friend, become a spousal caregiver, and care for yourself. On this program, caregiving expert Pamela D Wilson talks about making a dementia plan that includes care for the caregiver.
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The impact of dementia on spouses can be an uncomfortable but necessary discussion. When your spouse has dementia, Alzheimer’s, or any type of memory loss diagnosis, it is essential to learn how to prepare for dementia care which becomes the responsibility of the healthier spouse.
Dementia and Spousal Caregiving Relationships
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While dementia care is about the person diagnosed, it is the dementia caregiver and their needs that are largely ignored or deprioritized. If you are a spousal caregiver, you may have several questions:
- How will dementia affect your relationships?
- What is the impact of dementia on family members?
- What is the emotional or financial impact of dementia on a married couple?
Other questions arise about the impact of dementia on spouses when multiple health complications exist. We’ll also discuss how to process the emotional loss of a changing relationship with a spouse who may be your best friend.
How to Prepare for Dementia Care
Let’s talk about the importance of discussing memory loss, obtaining a diagnosis, and being realistic about health. If you missed the show last week, search for Episode 140, Being Realistic About a Parent’s Health, on my website or one of the podcast apps that carry the program, like Apple, Spreaker, and Spotify.
Listening to this program will help you gain insights into why loved ones avoid talking about health concerns and how to move conversations forward. For caregivers who say my wife has dementia or I have a husband with dementia, you likely already have a diagnosis and are beginning to see the impact of dementia on spouses.
But for those who say I think my husband has dementia or my wife has dementia, how can you know? Definitively it takes a brain autopsy after death, but before that, memory testing, blood tests, CT, MRI, or PET scans can help diagnose dementia, Alzheimer’s disease, or something else. Memory loss can be caused by deficiencies in vitamin B 12 or complications from taking other medications, which is why it is vital to seek a diagnosis.
Why is getting a diagnosis important when some people believe Alzheimer’s is a death sentence? It’s important because someone has to be the caregiver.
The Impact of Dementia on Spouses
Becoming knowledgeable about the diagnosis allows you to plan for progressing memory loss. The impact of dementia on spouses is nothing to ignore or sweep under the rug.
Dementia has a significant effect on the life of the spousal caregiver. Some spouses consider leaving or divorcing a spouse with dementia. This is especially true if this is a second marriage situation and one spouse was a caregiver in a prior marital relationship.
While leaving or divorcing a spouse with dementia happens, this is less common than learning how to live with someone with Alzheimer’s. Learning about the impact of dementia on spouses begins with looking at health risks that coexist with memory loss.
Additionally, many ask about the difference between dementia and Alzheimer’s disease. Dr. Jonathan Graff-Radford from the Mayo Clinic has an article that discusses the difference called Alzheimer’s and Dementia: What’s the Difference?
I also interviewed Dr. Graff-Radford on The Caring Generation Podcast Episode 11: The Signs of Dementia Checklist.
Additionally, the National Institute on Aging also has an excellent research page called the Alzheimer’s Disease Genetics Fact Sheet that answers the question does Alzheimer’s disease run in families?
Confirming a diagnosis of memory loss allows married couples and families to plan ahead for the impact of dementia on spouses. If you’ve never been in a situation caring for a spouse, elderly parent, or grandparent before, you may not know how to prepare for dementia to advance.
Multiple Health Conditions Can Complicate Dementia Care
In addition to dementia or Alzheimer’s, your loved one may have other health conditions that can complicate day-to-day care. Chronic conditions that result in more time devoted to care needs include arthritis, osteoporosis, diabetes, heart disease, and breathing issues like COPD.
Poor health and physical disabilities may further complicate spousal caregiving relationships where both spouses are over age 65 or older. In all situations of caring for a dementia spouse, the husband or wife without dementia must be extra attentive to their health and care needs.
Being the primary caregiver in a spouse situation can be incredibly isolating and result in feelings of depression and hopelessness. Becoming solely responsible for things that a couple previously managed together can be daunting, especially if managing care and a household requires substantial time and effort.
Know that the Alzheimer’s spouse may become increasingly needy to the point they want to be constantly in the presence of the healthy spouse. Adult children wishing to support parents who have careers and may be raising their children can experience high-stress levels.
Children often feel pulled between caring for aging parents, employment, and family relationships. When you add family caregiving to any life situation and one or more major health conditions, exhaustion can result, and care situations can feel impossible to manage.
How to Deal with a Spouse with Dementia
So, let’s answer the question of how dementia affects the spouse with dementia and the caregiver spouse. Let’s first assume that the spouse with dementia is generally healthy.
In this case, as forgetfulness increases, more assistance is needed with routine activities. For example, reminders to take medications, shower, change clothing, eat and participate in daily activities.
If or when the dementia spouse refuses to participate, these struggles add to the negative impact of dementia on spouses. In addition, when memory loss affects daily activities, there may be changes in mood or increasing repetitive behaviors.
Behaviors of loved ones with memory loss can significantly impact spouses when responses to requests result in aggressiveness or create more work for the caregiver. As a result, the caregiver spouse may need to establish routines and weekly schedules to manage the impact of dementia on marriage.
Caregiving Battles Stress Marital Relationships
The impact of dementia on spouses can result in daily battles for control. Caregivers can reach a point where they wonder if learning how to deal with a spouse with Alzheimer’s will erase years of their life and everything they loved about being married.
Worry or feelings of regret lead to critical points about the necessity of self-care. If both spouses are retired, and the spouse with dementia cannot be left alone for safety reasons, the caregiver spouse must make time away from the care situation for their own needs.
This means creating and maintaining outside friendships and socializing that might have previously only been a couple’s activity. It is likely but not guaranteed that the caregiver spouse will outlive the dementia spouse. Having established friendships and participating in social activities can be very supportive after the caregiver loses their spouse.
Alzheimer’s and dementia are life-affecting. The stress of being the primary caregiver changes the marital relationship.
Becoming the Caregiver for a Spouse with Dementia
One day you are a husband or a wife, and the next day you are a caregiver. The shift to becoming a caregiver can feel like a major loss, especially when you have to learn how to talk to a loved one with dementia.
Spouses in good marital relationships may feel like they are losing their best friend, confidant, and lover. On the other hand, spousal caregivers who have remained married but who are in a strained relationship may become resentful, angry, and feel trapped in a situation over which they have no control.
Married couples with an early memory loss diagnosis who spend time planning for the future together weather the impact of dementia on spouses better than those who don’t plan. Then there are other spousal dementia situations where a wife feels stuck because the husband refuses outside help or assistance.
For example, a spouse refuses to allow caregivers into the home so that the wife can have time away from caregiving. There are other cases, where a spouse—male or female—needs substantial care.
This level of care may require the caregiver spouse to be awake all night, provide incontinence or toileting assistance, or even help physically transfer a spouse. Situations, where the primary caregiver does it all by choice or is not receiving help from other can be physically and emotionally demanding and risky.
Risks of Dementia for Spouses
A dementia spouse who needs substantial physical assistance can risk a fall or other injuries. The caregiver spouse can also become injured.
The impact of dementia on spouses affects each spouse to different degrees. At some point, the spouse with dementia may be past the stage of understanding the consequences of situations where if a fall occurs, the consequences place both spouses at risk of physical harm.
What do you have, then? Two spouses who are unable to remain in a home environment and who may require advanced care in a nursing home.
If there are no children to offer support, the options for both spouses can be extremely limited. Making decisions under pressure or in a crisis is why obtaining a diagnosis, researching future care options, and having honest conversations are critical before health concerns worsen for the spouse with dementia and the spouse caregiver.
Adult children can be helpful in these situations by being realistic about the support they can or cannot provide.
Dementia Can Be Affected by Other Health Conditions
Important to know is that dementia can result from many health conditions that begin in middle age. For example, high blood pressure grows into other heart conditions if not well managed.
Diabetes can result in circulatory issues that affect the brain. Having a stroke or being diagnosed with Parkinson’s disease can eventually result in dementia.
All of these are reasons to pay attention to your health and learn about health conditions when you are young to be healthy when older instead of being diagnosed with multiple health conditions that require a great deal of care and support from others. So let’s say you are a spousal caregiver for a husband or wife with dementia or Alzheimer’s disease.
Your husband or wife has multiple health conditions. You may feel that life as you know it, is over. You can’t turn back the clock.
Or you may be early in a care situation and see the writing on the wall. You know that eventually, this may be your situation.
What steps can you take today to preserve your health and well-being? How can you manage life as a primary caregiver when you’ve lost half of your support system and may be feeling defeated or lost?
How to Manage When Losing a Marital Partner
Let’s return to talking about the impact of dementia on spouses and what you can do if you are experiencing stress, anxiety, exhaustion, or hopelessness. The first recommendation is to acknowledge the pain and grief you are feeling.
A life-changing diagnosis like dementia or even cancer can be a shock. Plans you had for retirement and other hopes and dreams may be stalled or ended.
If this is your situation, learning how to accept and adapt to a problem may take a course of action. Listen to The Caring Generation podcast episode 92, What to Do When Your Elderly Parents Give up on Life. On this program, I interview Rich Alderton about how learning to adapt can reduce fear and uncertainty about life situations.
How to Keep Going When You Want to Give Up
As a caregiver or a person diagnosed with dementia, you may feel like giving up on life. Unexpected life situations can have us feeling a little defeated now and then.
The path forward is figuring out how to pick ourselves up and keep going. When you are a caregiver, the impact of dementia on spouses can leave you unsure about your next move.
There may be times when bouncing back feels impossible, or you are overwhelmed, or you don’t have the energy to keep fighting.
Identifying ways to shift perspective in care situations and other life challenges can help manage feeling discouraged. Caregivers can feel like they are failing when loved ones refuse care, their behaviors become difficult, or their health continues to go downhill.
In truth, you are doing the best you can under the circumstances. Recognize that without your efforts, your husband, wife, or the person for whom you care would be in a much less advantageous situation.
Hold Onto Your Retirement Dreams
There are also times when dreams for retirement seem out of reach. By focusing on the steps to get where you want to go instead of dwelling on not hitting the destination, you may more effectively manage emotions and disappointments.
So, for this, concentrate on your next step. Document the progress you make to look back and see that you are moving closer to a goal.
Traditional wisdom says to focus on the bright side and be optimistic. However, it can be challenging to do this when you are a caregiver 24 hours a day for seven days each week.
Your world consists of nothing but caregiving. Being isolated and alone takes us back to the idea of gaining perspective. To regain perspective, you must remove yourself from caregiving for consistent periods each week to see that there is a big world out there.
Being realistic, the problem that taking time off from caregiving duties can create is that you may see everyone else going on and enjoying their lives. You dread returning to your caregiving prison after having time off.
Recognize Negative of Self-Destructive Behaviors
The impact of dementia on spouses means recognizing negative or self-destructive behaviors and working hard—really hard—to find solutions. Try to avoid comparing your life to others.
You have no idea what obstacles or setbacks others experience. Their lives might look easy, but they may be struggling under the surface.
More practical advice is if you are complaining, then quit. Complaining leads to more negativity and won’t get you where you want to be. It won’t make you happier. Instead, use the time you might spend complaining or worrying by taking action to figure out how to improve or change your situation.
Make time for yourself. By doing more of what you love and spending time with friends, you will find the inspiration to keep going on days when you’d rather give up. By investigating and becoming more aware of options, you can see that hope exists.
Start a daily diary and write down things that you do for yourself. You can begin balancing things that make you feel good with things that stress you out by adding to and growing this list.
Manage Your Thoughts and Mood
Sometimes it can be hard to realize how simple things can affect moods—positively or negatively. The impact of dementia on spouses can be a life event that lasts for longer than you imagine.
Caregivers in online or in-person support groups will confirm that they thought being a caregiver was a short or time-limited experience and are still caregivers today. Time frames related to being a caregiver are why making a plan to live your life married, but in a sense separate if a spouse is diagnosed with dementia is mandatory.
The impact of dementia on spouses means that your husband or wife with dementia will eventually need total care while you may be healthy and want to live life to the fullest.
Marital Vows Don’t Mean Giving Up Your Life
Marital vows to care for each other in sickness and poor health don’t mean that either spouse has to become sick because the other spouse is ill. The choices we make in health and lifestyle throughout our lives result in our lives when older.
If you are a middle-aged or retired caregiver, you may realize how much you need and miss having friends in your life. If you had children, they might be grown up and living their lives.
The impact of dementia on spouses and being a caregiver leads to losses and tradeoffs. All caregivers experience making difficult decisions when the unexpected occurs.
Think about your life. How many relationships changed because of marriage, parenthood, sickness, friends moving away, divorce or death? Life is ever-changing, and while we feel more comfortable when it is predictable and stable, this isn’t always realistic.
Managing Unexpected Events
Sometimes it takes a jolt like a diagnosis of Alzheimer’s disease or another unexpected life event to set in motion thoughts about how we want our life to be. The impact of dementia on spouses allows married couples to make the best of today and plan for changes relating to increasing memory loss.
Maybe you want to spend more time with friends or take that vacation of your dreams.
Is it time to downsize your home and move to something more manageable for the spouse who will become the primary caregiver? What other actions can you take today so that when a husband or wife’s care needs increase, you already have systems and processes to respond positively?
The Needs of the Caregiver Must Also Be Considered
The answer to how do you survive a spouse with dementia, or my husband has dementia how do I cope is to be as proactive as possible as early as possible. While it may be challenging to allow the denial of others to hold you back from planning if you are the caregiver, your needs and health must also be considered.
The impact of dementia on spouses means having honest discussions about how much extensive care a spouse with memory care wants. If you can’t answer this question, meet with your doctor for an Advance Care Planning meeting supported by the Medicare program.
Get all of your legal documents in order. Research and discuss care costs. Look at your financial accounts.
Be realistic about providing care for a husband or wife with dementia and be unselfish about how the surviving spouse will continue with their life. These are difficult but necessary conversations to be proactive about the impact of dementia on spouses.
These are practical discussions that all families should have about caregiving. For example, who will be the caregiver, how will care be provided, what care is desired, and how will you pay for care.
These discussions are not limited to people with dementia or Alzheimer’s but can benefit all families, especially if these conversations happen before aging parents begin to decline. Or before you are diagnosed with a health condition and need care.
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