Most of us know someone who has memory loss issues. Maybe we know someone who has cognitive impairment or dementia. What we don’t always see is how these issues affect the spouse of the impaired person. The caregiver role can turn into something no one anticipated.
Stress on caregiver spouse
At the earlier stages of diseases that show up first with short-term memory problems, the elder usually can take care of himself or herself. They can carry on a conversation, and participate in many of their usual activities. Over time, however, their abilities decline. Many who have what doctors call “mild cognitive impairment” go on to develop dementia. And that is a downhill course with no known ways to slow or stop the disease process. When there is a married couple involved in this journey, one may be doing rather well and the other is clearly too impaired to be alone. That can turn into a frightening, long-term situation for the healthier one of the couple.
In one case at AgingParents.com, the husband, Mitch, is impaired while the wife, Ethel, is not. He was always a nice and generous man, but dementia has radically changed his behavior. He has turned angry, argumentative and combative. His wife is terrified. They have plenty of resources to get care for him, but he has a kind of tantrum when she brings the caregiver in. She is not sure she can keep her husband at home, even though she promised she would not place him in a care facility. The stress is enormous. She has a mixture of feeling guilty for wanting to be relieved of the burden and deep loyalty and love for her husband.
One thing is clear: no one caring for a person with dementia, particularly a spouse, should be doing this alone. Ethel gets resistance from her husband over bringing in caregivers, but facing his anger is better than trying to take care of him by herself. She finally did hire the person whom she had anticipated needing to hire and he and his team are on duty. Ethel is learning, with support from both her own therapist, Mitch’s sons, and AgingParents.com, to avoid taking Mitch’s accusations personally. It’s very hard.
Her situation is not unique. Some kinds of dementia bring about aggressive, even combative behavior, as well as paranoias and other outbursts. Ethel promised Mitch he could stay in his own home for life. She will hold out as long as she can with competent caregivers, who are able to relieve her temporarily of the intense struggle to keep her balance while supervising Mitch’s care. She remains hopeful that she will not have to place him in a care facility.
This couple offers a lesson for other caregivers at home who have the means to retain specially trained dementia caregivers 24/7. Here is what Ethel is doing:
Hire help. The caregiver spouse needs relief. No one can keep up the pace of managing the care of a difficult person around the clock, all alone. Ethel had to ignore the resistance and temper tantrum of her husband reacting to the hired caregiver being in the house. She is up with Mitch half the night and is exhausted dealing with his outbursts and threats during the day. Now she can get some breaks, even if she has to sleep in a different room.
Be in frequent contact with the primary care physician (PCP). Medications to help manage difficult behavior exist and should be used to help control the symptoms of dementia. No one needs to be turned into a zombie, sleeping day and night due to heavy medication. On the other hand, dangerous behavior can happen without appropriate medication. There is a middle ground to be worked out with the exchanges and updates between the PCP and the caregiving spouse. Report behavior changes truthfully and ask for what you need.
Recognize that a promise to keep someone in one’s own home as long as possible means that there can be limits to this. What is possible is managing with full-time caregivers, and being able to get out of the house for relief from time to time. What is not realistic is trying to take on a burden that is so heavy it becomes destructive of one’s own health. Ethel can’t help her husband if her own physical and mental health break down. She’s on the edge now and with some luck, Mitch will settle into a routine that includes Ethel not being constantly with him, day and night.
Dementia affects over 6 million Americans. We can be better prepared for the possibility that someone we love will be affected if we recognize the need to plan ahead. Ethel in this case had at least established a working relationship with Mitch’s doctor who responds to her requests about medication and other issues. She had also lined up a caregiver team at the ready when she braved it and went ahead with bringing them in. She has some help from her own therapist, other support and participation to a limited degree from Mitch’s sons. She is doing an exemplary job. She also recognizes her own limits and has the courage to face all options. She is a shining example of loving an impaired husband and respecting his dignity and her own in all possible ways.