Dementia Care: Filling the Role of Spouse and Caregiver
The Purple Jacket is pleased to welcome back guest writer, Samantha Stein from ALTCP.org.
Dementia care is difficult because of all the changes the care recipient goes through. No amount of money or precaution can fully prepare families for when dementia strikes a loved one, and this reality is even more devastating for many couples. To illustrate, here is a video we came across online of Bob Treanor and his wife, Ruth. Bob provides valuable insight on what it is like for individuals to become dementia caregivers to their spouses.
Dementia affects the lives of many individuals. And as the video shows, it certainly does not only take its toll on the diagnosed. It also alters the lives of the people closest to the patient.
For this week’s post, let us discuss all of the intricacies of dementia and what caregivers go through for their family members and loved ones going through it.
Before anything else, let us clarify one common misconception: dementia is not a disease. It is the term used to refer to the severe decline in memory or thinking ability that it hinders a person from accomplishing everyday tasks. These signs and symptoms vary, but the most common ones are as follows:
- Memory Loss
- Difficulty in language and communication
- Change in Attention Span
- Reasoning and Judgment
- Visual Perception
- Behavioral Changes
Another misconception that people have is that dementia and Alzheimer’s disease are the same. However, the latter is, in fact, a type of dementia. The other types are listed below:
- Vascular dementia
- Dementia with Lewy bodies
- Mixed dementia
- Frontotemporal dementia
- Creutzfeldt-Jakob disease
- Normal pressure hydrocephalus
- Huntington’s disease
- Wernicke-Karsakoff Syndrome
Dementia Caregiving Statistics
While it may depend on the type of care that they provide, caregivers often put themselves at a great risk by taking on the responsibility of supporting their loved ones. We have all heard the stories about it; co-workers barely meeting deadlines because of caregiving duties, people have even left their jobs to fulfill the role full-time, or neighbors leaving their homes to move in with loved ones. It is not an easy feat and it requires more dedication than anyone can ever really understand.
Dementia caregivers are no stranger to this circumstance. In a study released by the Alzheimer’s Association, more than 15 million family members and friends have provided 18.1 billion hours of unpaid care to loved ones with Alzheimer’s and other dementia in 2015. The economic value of all this was worth over $221 billion. Moreover, 38-percent of dementia caregivers have shared that they have been doing the work for six years or more. When a person takes on a responsibility this big and it lasts this long, it is bound to have negative effects on his or her well-being.
As cited in the same study, caregivers to dementia care recipients are 3.5 times more likely to say that the greatest consequence of the task is that it creates or aggravates their own health problems. Inevitably, these caregivers do not get to walk away from the experience unscathed. Physically, emotionally, financially, socially, or mentally, dementia caregivers will have to face some type of health problem during or after the care.
Lastly, and perhaps the most devastating discovery is that people caring for their loved ones hospitalized for dementia are more likely to pass away the following year, even after accounting for the spousal caregiver’s age.
Gender Differences in Caregiving to a Spouse with Dementia
Traditionally, caregiving is perceived by the majority as a woman’s task. This may be because of her nurturing nature or because of the traditional gender roles in society. However, the perception and behavior of society is rapidly changing. As seen in Bob and Ruth’s story, men are also becoming increasingly open to caregiving.
Gender Differences in Caregiving among Family – Caregivers of People with Mental Illness, a study published last year, attributes the growing change to longer life spans, more women taking on jobs outside the home, and smaller families. Similar to the reasons that women have in assuming the role of caregivers, men are driven to assume the responsibility by a sense of affection, commitment, and family responsibility.
Unfortunately, research that focuses on this subject is still quite limited. Most studies still pay little attention to male caregivers and maintain focus their female counterparts.
(Photo Credit: Pixabay)
Marriages take the biggest hit when it comes to dementia. Perhaps, this is might be one of the biggest tests to “in sickness and in health.” Imagine slowly watching partner forget about a life that you had built together over the decades. Not only that, imagine feeling angry at the whole situation and wishing it was all over, then immediately being consumed by the overwhelming guilt of even entertaining the thought. This is the reality that many dementia caregivers face on a regular basis.
Physically present, but psychologically absent—this is how Pauline Boss Ph.D. describes how spouses can change when dementia takes over in her NextAvenue article entitled, For Caregivers of Spouse with Dementia, a Redefinition of Marriage. For many spousal caregivers, dementia has turned their married lives into an abstract relationship that feels like “living with a stranger” or “loving half a person.” It is no longer about building and maintaining a perfect relationship. As Boss puts it, it becomes pushing to make the relationship good enough.
We get a further look into this through John R. Smith’s How to Care for a Spouse with Early-Onset Alzheimer’s. Just in his early 40s, he has become the primary caregiver of his wife whose health condition is so advanced that she has lost the ability to brush her teeth, bathe, or even remember his name.
One striking point in his account is how spousal caregivers will feel a unique kind of isolation. When your spouse could barely remember your name, how can he or she truly give consent to intimacy? Despite it being a taboo in some social circles, sex is one of the most basic needs of a human being. Dementia can and will take that away in marriages because, as Smith’s therapist puts it, it will start to feel like date rape.
The Importance of Self-Care
In the chaos, success, and emotional turmoil that come with caregiving for a spouse with dementia, caregivers can easily neglect their own lives. In their minds, their spouse’s needs become the primary concern. However, prioritizing their own care concerns and needs is and will always be important, and they should not feel guilty for it.
Spousal caregivers, especially those handling cases as consuming as dementia in their own homes, can feel as if anything that takes their time and attention away from their spouse is not worth the thought. In some cases, taking a break could even feel as if their being selfish and spending the money on anything that they want feels like a substantial waste of limited resources.
But taking care of themselves does matter immensely. In Smith’s case, he stopped eating properly because he dedicated most of his time and their resources caring for his wife. He ended up losing weight, and every time his wife would stumble and fall, he would have trouble picking her up.
Your Concerns and Emotions are Valid
It has been said countless times before, but let’s reiterate: the quality of your care depends on how much you care for yourself. To the caregiver reading this, your health matter just as much as your spouse’s, so take the time to safeguard it.
As stated above, most caregivers learn later on that their own health concerns are aggravated by the responsibility of caring for their spouses. Stop, and reevaluate if you have enough saved away for that. The different types of long term care facilities may vary in prices, but none of them come cheap. Bear in mind that preparing yourself for the long term care costs you might have to face is all right.
Also, taking the time to continue doing what you love to do is not just acceptable but necessary. Maintaining good health by eating right (even if it is a little more expensive) and exercising can help you handle caregiving so much easier. Keeping your mind and your body in shape will make you a more effective caregiver. A strong body will help you handle the physical demands of caregiving, whether it is heavy lifting or working longer hours. A sound mind will help you handle the emotional roller coaster that come with it.
Lastly, but just as vital, remember that it is okay to ask for help. You are human. Exhaustion and frustration will come, and there will be times when you feel like you are filled to the brim. When this happens, know that those emotions are valid and that they do not make you a horrible spouse. Just ask for help from the people you trust the most. It may be from your children, other family members or even your neighbors. If budget permits it, the help might even come from a hired extra pair of hands.
Samantha Stein is an online content manager for ALTCP.org. Her works focus on key information on long term care insurance, finance, elder care, and retirement. In line with the organization’s goal, Samantha creates content that helps raise awareness on the importance of having a comprehensive long-term care insurance plan not just for the good of the individual but for the safety of the entire family.
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