Q. My wife was diagnosed with early-onset dementia about two years ago. On most days, I understand and accept the diagnosis. Some days, however, I wonder if there’s been a mistake. Our world could seem normal in one instance, and then in the blink of an eye, she forgets all of the important things we share in our life. I wonder if one day, as her dementia progresses, she will forget me altogether. I wonder if I will feel like a widower, even if she is still alive. Have you witnessed this happening to couples in similar situations, and if so, what did they do to cope? Thanks so much for your help!
A. Dementia can change many aspects of a relationship but not the need for love and affection.
In one example, after more than 30 years together, Sharon Hunter and her spouse “separated,” but not in the way you typically think of people being separated. Her spouse moved into a memory care home in 2022, as Sharon could no longer handle the destructive behaviors that resulted from her spouse’s dementia.
Sharon really felt the loss of her loved one on Valentine’s Day. That day, the main floor of her house had been emptied because she was getting the floors redone and then a crew showed up to cut down a diseased 100-year-old elm tree in her front yard. There was something about the empty house and the cutting of that tree that opened the door to the grief she carries with her all the time now.
The house shook every time a branch hit the ground. To Sharon, that tree became a symbol of her life with her spouse. The tree was cut down in a couple of hours. She feels like her spouse’s vitality and memory are being cut down by dementia just as quickly.
Sharon’s spouse can no longer remember Valentine’s Day, her birthday, or their anniversary. As Sharon describes, “it’s like I’m widowed. And yet I’m not a widow because my partner is alive.”
According to Sharon, “(t)here are no rituals for this kind of loss of a partner; no funerals, no celebrations of life. There’s no public acknowledgement of the grief I carry on a daily basis — the grief that sometimes makes it hard for me to breathe. It’s like a really bad version of the movie Groundhog Day without any of the funny parts.”
Sharon also notes that “(d)ementia creates such complicated pain and grief and it has almost destroyed our relationship, but the love we have for each other is still there.”
Feelings of Loss and Grief When a Person Has Dementia
When a person close to you develops dementia, you may both have strong feelings of loss and grief. These feelings may develop or change as the person’s dementia progresses. Depending on your relationship with the person and your individual circumstances, you might feel that you are losing or have lost:
- the person;
- your relationship with the person;
- intimacy with the person;
- companionship, support, and special understanding;
- communication between you;
- shared activities and hobbies;
- freedom to work or take part in other activities;
- a particular lifestyle;
- future plans.
You may also find your role in your relationship has changed. Perhaps the person always looked after the family’s finances, and this task has now fallen to you. Making decisions about financial and legal matters may be overwhelming. You may need to ask family members, friends, or professionals to help you.
Providing care for your spouse will typically also create new sources of stress. As your loved one’s dementia progresses, you or others in your family may find the changing roles difficult to accept. It takes time to adjust to your new role in the relationship as both a spouse and a caregiver.
Some people cannot easily cope with this type of change. However, on a positive note, some people who care for a family member with dementia find that their families experience a new kind of closeness, as they work together to deal with stressful situations. Some people even show strengths that they never knew they had!
Tips When One Spouse Has Dementia
For couples with decades of shared memories, a partner’s decline in the ability to communicate is one of the most frightening and frustrating consequences of dementia. For these couples, the communication strategies they have may not work anymore. Impaired communication leads to misunderstandings, conflict, isolation, and loss of intimacy.
It’s important for couples to remember that you have a history together and strong emotional bonds, and this plays a role in how to act and react to a partner who now has dementia. Here are some ideas for couples dealing with a partner who has been diagnosed with dementia:
- Be knowledgeable and understand what to expect in different stages of the disease. This can help you to think ahead and learn ways to better cope with the situation. Learn more here.
- Make sure you have someone to talk to: Communication can help you get through this phase of life. You need to keep in mind what is important to you and what you do have control over. A therapist or a support group for spouses who have loved ones with dementia may be helpful!
- Allow yourself and your spouse to grieve.
A diagnosis of dementia, and the ensuing loss of who your spouse used to be, causes grief, just as surely as death causes grief. Allow yourself to mourn the loss of who your spouse used to be, and understand that you may experience some or all of the stages of grieving: denial, anger, guilt, sadness, and ultimately, but perhaps only after many years, acceptance. Please also recognize that your spouse who has been diagnosed is also going to grieve, typically going through some or all of the same stages of grieving before finally getting to acceptance.
- Try to live for the moment without focusing so much on the future.
- Keep a journal, and write down your feelings every day.
- Appreciate what your loved one can still offer, from a smile to holding hands to giving a hug.
- Find the things that bring you both joy and a sense of happiness and seek them out. Try to make time for the activities you and your spouse can still enjoy. Something as small as a stroll together can lead you into a space in which you and your spouse can just enjoy time together. It can also become a way to deal with the frustration, by leaving it behind for a few moments and coming back to it with a new perspective.
- Get therapy to help with communication: Caregivers/spouses are not experts in communicating with people with dementia. Sometimes they choose strategies they think are helpful but which may be ineffective. Also, they often give up communicating with their less verbal partners because benefits are not as obvious. CARE (Caring About Relationships and Emotions) therapy was designed to increase helpful communication in the person who does not have dementia and sociable communication in the person who does. This relationship-focused intervention also was designed to reduce disabling behavior (such as criticizing or testing their partner’s memory) in caregivers and unsociable behavior (such as not making eye contact) in care receivers. Read more about CARE therapy and intervention here.
- Learn and practice mindfulness skills, or meditation, as it can be a powerful tool for stress relief and managing dementia grief.
- Accept that you may not always be the best caregiver and plan for how to pay for the care that will likely be needed. At some point, you will likely need help carrying for your spouse, and this kind of help can be very expensive. As soon as you know that your spouse has dementia, you should strongly consider retaining our firm for Level 3 estate planning and asset protection planning using the Living Trust Plus asset protection trust.
- Home care. Home care companies, as of the time of this writing, typically charge $30 to $35 per hour, most with minimum four-hour shifts. If you have long-term care insurance of any type, be sure to use it as soon as any care is needed. Even if outside care is not needed, consider filing a claim if your spouse needs assistance with at least two activities of daily living, because once a claim is accepted, you stop paying the premium.
- Assisted living/Memory care. As your spouse’s condition worsens, at some point you will likely need to place your spouse into “memory care,” typically a part of every assisted living facility. These are private-pay facilities that currently charge between $7,000 and $11,000 per month in the DC metro area.
- Nursing home care. As your spouse’s condition continues to worsen, at some point you will likely need to place your spouse in a nursing home (also called a nursing facility or a skilled nursing facility). Most people who are in memory care could also be in a nursing home, but memory care, because it is part of assisted living, tends to be provided in a more home-like environment, as opposed to the more institutional setting of a nursing home. However, it is only once your spouse is in a nursing home that you can use Medicaid to pay for the care. Our firm has a strong specialty in helping people protect assets and obtain Medicaid. Always know that if your spouse goes into a nursing home, you can hire us for Level 4 planning to protect all of your assets and get your spouse on Medicaid to pay for the nursing home.
- Plan ahead: Set up meetings now with family members and an experienced attorney, such as myself, so that the wishes both of you have are known and in writing. The ideal time to do this, of course, is while the person with dementia is still competent and can still make sound decisions.
Relationships are often complex at the best of times. Add to this the changes brought on by dementia, and even the best relationships can become extremely challenging. Hopefully you’ll be able to continue to cherish the one you love and the remaining time you have together, and nurture and seed memories that will soothe you for years to come.
Caring for Your Loved One Should Also Include Planning Ahead
As mentioned above, as soon as your spouse receives a diagnosis of dementia, one of the greatest ways to gain peace of mind comes with doing appropriate legal and financial planning for your future. Even if you don’t do the Level 3 estate planning and asset protection planning mentioned above, it is crucial that you have at least Level 1 incapacity planning, which includes a Power of Attorney with critical asset protection powers that will allow you to do Level 4 planning, when your spouse is nearing the need for nursing home care or is already in a nursing home. Please call us at any time to make an appointment for an initial consultation:
Northern Virginia Medicaid Planning: 703-691-1888
Fredericksburg, Medicaid Planning: 540-479-1435
Rockville, MD Medicaid Planning: 301-519-8041
Annapolis, MD Medicaid Planning: 410-216-0703
Washington, DC Medicaid Planning: 202-587-2797
About Evan H Farr, CELA, CAP
