Q. Valentine’s Day has always been special for my husband, Charlie, and I. It’s our wedding anniversary and we used to go all out every year celebrating it. Charlie wasn’t much of a romantic until he met me. He’s learned over the years that I love chocolate, flowers, and sappy Hallmark cards. One year, on our 25th anniversary, he even surprised me with a trip to Paris! Charlie has certainly become quite the romantic during the 40 years we have been married!
A few years ago, Charlie was diagnosed with dementia and he is progressively getting worse. Sometimes I feel like taking care of Charlie is similar to when my toddler grandchildren come over. I am concerned what it will be like when he no longer recognizes me or our children or grandchildren. I hope I don’t sound cruel, but I sometimes have to remind myself that he is my beloved husband, the one I built my life with, and not a burden. Do you have any tips to keep the love alive when so much of who my husband was has gone away?
A. Happy Anniversary to you and your husband and Happy Valentine’s Day to all of our readers!
Each year, more than 16 million Americans provide more than 17 billion hours of unpaid care for family and friends with Alzheimer’s and other dementias. While the caregiving journey can be rewarding, it can also be overwhelmingly challenging.
As the disease progresses, many caregivers are frustrated by their loved one’s inability to communicate their thoughts and their inability to remember faces and names. The disease eventually takes away all independence. In addition, dementia can cause mood swings and even change a person’s personality and behavior. Many people who have the disease struggle with depression and some can become violent, further increasing frustration for caregivers. But, despite all these challenges, if you care for and love someone with dementia, it can be extremely rewarding and although it may not be obvious, your loved one is still there, behind the disease.
Documentary, Extreme Love, Dementia Explores Real People with Dementia and How to Sustain the Love
Award-winning British film-maker, Louis Theroux, directed a film, titled Extreme Love: Dementia, that explores couples who are in love and dealing with dementia. During the film, Theroux spends much of his time in Phoenix, AZ at Beatitudes, a housing complex for seniors with a memory care unit for those in need of one. During one scene, Theroux is in the kitchen of John and Nancy Vaughn, two residents who are both in their 80’s. Nancy suffers from dementia and because the couple have no children, and the memory care offerings are unaffordable for them, the burden of care falls squarely on John’s shoulders. For John, the moments of clarity when Nancy remembers their life together make the difficult parts of the day worthwhile. While John is explaining his feelings to Theroux, Nancy walks over and gives her husband a hug. “I owe you so much”, she says. “We owe each other so much, and that is what is sustaining us right now,” responds John. John knows that Nancy will need more care in the future, but they are doing the best they can right now. This is only one of many touching moments in a thought-provoking film.
In another instance, Theroux meets Glen and Celinda and their 9-year-old daughter, Callie, and the caregiver’s frustration shows. After more than 20 years of marriage, Celinda was diagnosed with dementia at the age of 47. Doctors have told Glen that Celinda will probably lose the ability to recognize her family within 2 years but, despite this distressing prediction, she faces the future with optimism. Perhaps that is partly because the illness itself is protecting her from the worst of her own reality. Celinda doesn’t think the dementia is progressing anywhere near as quickly as does Glen, who acknowledges that he must face a very uncertain future alone, and sometimes even contemplates divorce because caregiving for Celinda has become much too much to bear. Glen’s dilemma seems to contrast with the devotion of John to Nancy, and yet there is no sense of judgment in the film. The vastly different circumstances of these two couples mean that very different solutions will be appropriate and the anguish involved in these choices is obvious.
Although one neurologist, visited by Celinda and Glen, appears in this documentary to outline the dire need for new treatments, the documentary is not medical in nature. The purpose is to show families coping with adversity. Theroux shows that with the “slow and sweet” approach advocated by Celinda’s doctor, happiness, humor, and tenderness can bring some light to this “world of encroaching shadows”.
This documentary, his other documentary, Extreme Love: Autism, or any his other 50 documentaries are available to view for free on the BBC channel. Unfortunately, the links seem to only work in the UK. You can view excerpts from this video on YouTube here.
A Loving Approach to Caring for Someone with Dementia
Of course, it’s hard to inherently know how to care for a person with dementia or how to love someone whose personality is so completely different—but we can learn. Improving your communication skills will help make caregiving less stressful and will likely improve the quality of your relationship with your loved one. Good communication skills will also enhance your ability to handle the difficult behavior you may encounter as you care for your loved one.
These are tips for communicating with a person who has dementia:
1. Set a positive mood for interaction: Your attitude and body language communicate your feelings and thoughts more strongly than your words do. Set a positive mood by speaking to your loved one in a pleasant and respectful manner. Use facial expressions, tone of voice, and physical touch to help convey your message and show your feelings of affection.
2. State your message clearly: Use simple words and sentences. Speak slowly, distinctly, and in a reassuring tone. Refrain from raising your voice higher or louder; instead, pitch your voice lower. If he or she doesn’t understand the first time, use the same wording to repeat your message or question. If he or she still doesn’t understand, wait a few minutes and rephrase the question. Use the names of people and places instead of pronouns (he, she, they) or abbreviations.
3. Listen with your ears, eyes, and heart: Be patient in waiting for your loved one’s reply. If he or she is struggling for an answer, it’s okay to suggest words. Watch for nonverbal cues and body language, and respond appropriately. Always strive to listen for the meaning and feelings that underlie the words.
4. Respond with affection and reassurance: People with dementia often feel confused, anxious, and unsure of themselves. Further, they often get reality confused and may recall things that never really occurred. Avoid trying to convince them they are wrong. Stay focused on the feelings they are demonstrating (which are real) and respond with verbal and physical expressions of comfort, support, and reassurance. Sometimes holding hands, touching, hugging, and praise will get the person to respond when all else fails.
5. Remember the good old days: Remembering the past is often a soothing and affirming activity. Many people with dementia may not remember what happened 30 minutes ago, but they can clearly recall their lives 30 years earlier. Therefore, avoid asking questions that rely on short-term memory, such as asking the person what they had for lunch. Instead, try asking general questions about the person’s distant past—this information is more likely to be retained.
6. Maintain your sense of humor: Use humor whenever possible, though not at the person’s expense. People with dementia tend to retain their social skills and are usually delighted to laugh along with you.
Hope this is helpful for you and your husband and that these tips help improve your communication and help the love you have experienced for 40 years of marriage resurface.
Visit a Loved One with Dementia—they Can Feel the Love!
According to research carried out by Alzheimer’s Society, loved ones with Alzheimer’s benefit from family and friends visiting, because Alzheimer’s sufferers still have an “emotional memory.” In other words, when it comes to visiting loved ones with Alzheimer’s, the positive emotion from an encouraging and supportive visit can endure much longer than the specific memory of that visit. So, be sure to visit your loved ones with dementia and spend quality time with them! Always remember that love is not a memory; love is a feeling, and even though your husband may not remember your name, he can still feel your love.
Persons with dementia and their families face special legal and financial needs. At the Farr Law Firm, we are dedicated to easing the financial and emotional burden on those suffering from dementia and their loved ones. We help protect the family’s hard-earned assets while maintaining your loved one’s comfort, dignity, and quality of life by ensuring eligibility for critical government benefits such as Medicaid and Veterans Aid and Attendance. If you have a loved one who is suffering from Alzheimer’s or any other type of dementia, please call us as soon as possible to make an appointment for an initial consultation:
Alzheimer’s Planning Fairfax: 703-691-1888
Alzheimer’s Planning Fredericksburg: 540-479-1435
Alzheimer’s Planning Rockville: 301-519-8041
Alzheimer’s Planning DC: 202-587-2797
About Evan H Farr, CELA, CAP
