WE WERE “WE!” NOW BECOMING “YOU” & “ME”
WE WERE “WE!” NOW BECOMING “YOU” & “ME”
Caregiver Spouses
The relationship with a spouse is frequently the most significant of life’s relationships—in its intimacy, intensity, and extensity. The changes that come from a husband or wife with dementia are gradual but eventually become immense in their impact on that relationship.
A key matter is the heartbreak we experience. The death of a spouse is among the most difficult of life’s experiences; upon such a death, most of us will enter into a long spell of loneliness and despair. The slow loss to dementia is worse, given the extended time frame with years and years of gradual decline to nothingness.
The relationship is in “suspension” for a very long time. What a strange relationship—for the spouse with dementia to be both the physical person we have known for many decades and yet a person we can barely connect to. As the various elements of them disappear—of caring for themselves, of being the core of the caregiver spouse’s life, as a companion in many activities, of romance and sexuality, and of being central to many other relationships--family, friends, and work. At first, the caretaker and the dementia person mourn together, until the cognitive loss from dementia leaves only the caretaker to mourn.
For Beverly & me, this followed a predictable course with an very long time frame. At diagnosis, there was the beginning of mourning by us both, but we could live in the moment for now, feeling that there we were the same and maybe it would not progress. We were both still working and she seemed at the peak of her career. As memory problems became worse, she retired, after I had. Then the long decline; mourning was in the background, only to be aroused by some striking event/behavior. Her moments of anger over some undeterminable slight on my part; becoming lost on walks in the neighborhood or driving; not being able to remember what I just told her; confused and unable to think well; physically moving irregularly, so as (for example) to often bump her leg on the dishwasher door when down.
But the truly difficult time began several years ago. She was angry at me every evening for many days (sundowners); she walked off at midnight, requiring police help to find her. And during that phase, one night she fell head first down several stairs landing directly on her face; there were multiple facial wounds. The police suspected that I had beaten her in the face. (More detail in the first blog). We lived separately during the hospital stay and rehabilitation process; then she had her own room in the place where she is now (nearly 5 years ago). This began our separate living. There has been much mourning since, though some happy times to compensate. These losses comprise a huge “wound” of despair, loneliness, and grief.
Our relationship continues. She still knows who I am, both by the name “David”’ that others and I announce and by my voice; her vision is too limited to recognize me by sight. She speaks words, but usually in a garbled sentence. She usually wants hugs and a friendly kiss and welcomes touching and holding hands. When I visit, she is either happy or relatively tired; either way wanting to interact. It would be easy for an observer to conclude that there is no longer anyone there, but such an observation misses her strong effort to overcome her limitations. She is definitely “there” for me and for many others; even on the phone she tries to be involved in social interaction.
The practical issue for spousal caregivers of those with dementia is how to continue to be part of their life. And the related issue is who we become as we lose them. One phrase for the latter is “letting go;” a similar but stronger phrase is “moving on.” What is our connection now and how will it change with their decline?
The level of involvement varies considerably. One end is total involvement, continuing to live with him/her in a close relationship 24 hours a day and every day of the year. The other extreme is totally moving on, leaving him/her to be cared for by someone else, and minimally or not involved The radical total involvement is workable for much of the progression of the disease, but eventually issues arise for them (incontinence, inability to manage much of normal daily life, outbursts of anger, etc.) that make that very difficult for a spouse. The radical “desertion” may seem easy, though guilt and judgment by others are common complications. And, unless leaving without any look back takes place, most of us would still be motivated to keep great care for our loved one. Most of us are in between these radically different approaches.
I should use myself as the first extreme. For more than 10 years, I managed 24/365, mostly by myself with occasional relief from an adult child of ours or a sister of hers in order that I could get away for a few days. Then, after the necessity to move her into a facility (first and second blog “From eternity to here” and “), I spent many hours every day with her in that facility. Those many hours in the facility represented an extreme that was not best--for me or for her. Relatives, staff at the facility, and materials I read all pointed to the idea of “Get a Life” for me and to the principle that her life was now deeply connected to this place where she lived—a society in which I was a marginal member.
The other extreme first came to my notice from a conversation with a woman who flew from the East coast every 3 months or so to visit her Mother, who was in the same facility as Beverly. When I told the visitor about my level of continuing involvement with Beverly, she simply said that she thought all men simply left their wives and “moved on.” And there are certainly now many examples of that—from men and from women “moving on” from their partner. In one case I know, the wife was transferred by her job to another city. And for a few months, she often flew back for a weekend to spend some time with her husband in the facility. Finally she came no more; following the apparent end of contact, he lived more than another year. Another case was a woman who simply left a message for her husband of many years while he was out of the house for part of the day. She wrote a note saying she had “had enough” and would not be back.
And the odd case. One man I barely knew gave me a whole report about how he wanted to divorce his wife of many years; she was now very advanced in dementia. But, he told me, he could not divorce her because all of the money they had was in a trust in her name. Still he wanted to divorce his wife because a woman of interest had told him she would not get involved with a married man. It was strange to get these particulars from someone of minimal acquaintance.
But there are many great examples of those who continued to care, though more sensibly than I had. In one case, the woman was happily married to the man with dementia. But as his anger developed and became violent, she was very fearful of being seriously harmed by him. After he entered this facility, the violence was generally under control from drugs. Even in late stages of the disease, she continued to visit on a regular (several times a week) basis. According to her, he knew who she was, though it was hard for me, from my observation point, to understand whether he knew anything at this point in his dementia.
Another couple I knew, the husband visited his wife in this facility nearly every day for a meal. She was advanced in the disease. He said to me early in those times that he could hardly stand to be in this place; still he came every day. I knew what he meant, both in terms of it being so sad to see our wives functioning as they were and of the unpleasant experience of being in this rather insane world of these residents who had various major difficulties. Another man said, “I don’t know why I visit her [his wife with dementia]; she has no idea who I am when I come and I always leave feeling very sad.” Yet he still came.
Still, these are not marital relationships in most senses of the term, as I discussed once (blog“Love and Marriage”). We live in separate worlds. And my time together with Beverly has limited interaction. Three years ago, we could have a genuine conversation, though it could not go beyond concrete issues and long past memories to deal with finances, politics, religion,… We could certainly talk about our children, our grandchildren, our friends, and especially the past together and her childhood. She could actively reminisce and make sensible comments. Now the conversation is not about anything, as her speech is typically incoherent—“’word salad” as it is called. Indeed it is, for the most part, unclear what she understands of what I say to her; and I rarely understand what she says to me. It will never now be possible to go out for a hike, a movie, dinner at a restaurant. She is now permanently in a wheelchair. After many years, “moving on” to some degree became essential to my having a satisfactory ordinary life. I would welcome another relationship. I will not divorce her. And I will continue to care for Beverly and attend to whatever issues come up. I visit her nearly every day and still know nearly all of the staff. Nurses and her physician inform me and consult about every medical issue as it happens.
So, this is an ongoing issue as the disease progresses. If you need to decide what your relationship to your spouse with dementia should be, what is likely to be a factor? The obvious issue is how advanced the dementia is. In the early stages, of course, it is natural to continue as always—sort of. In later stages: What can they manage? Is anger, sadness, or paranoia part of their interaction with you? Can you take him/her out to a restaurant? Or to church? To a grandchild’s soccer game or band performance? Still later: Do they still know you?
Obviously, if finances allow, hiring some part time help (perhaps from a service) may work, though it did not succeed for us. Or finding a facility like ours may be necessary though it is very expensive. The result is a major change in your relationship. And that allows one to think about other relationships, assuming some other party is willing to “be involved with a married man/woman.” Still, in the best of facilities, there are ongoing issues to help manage. Their functioning continues to deteriorate: eating, toileting, walking may become more difficult. And we want to know about their behavior and about medical issues as they happen.
Central issues that should involve the spouse are how to manage certain behavior problems. These include aggression, unpleasant behavior with others, inappropriate sexual talk and behavior, sadness and anxiety, fearfulness and paranoia. Trained/experienced CNAs and Nurses in a facility can observe and report issues as they arise; develop relationships with them! And, in the facility, you need a physician to address dementia-related, including these, and other medical issues.
Ultimately, the choice about staying with a loved one, either at home or in a facility depends upon what one will tolerate. The one who left her husband with her “had enough” note came to her limits, whatever the circumstances. Still we must remember that the person with dementia is struggling too, well into the disease. These are very hard times for them. The most violent ones are only occasionally so. The man whose wife came to fear him was still content most of the time. They still know their spouses, at least until the very latest stages of the dementia. And even then, they intuitively understand much about their human social world and relationships. It is too easy to assume that they are completely gone when, in fact, they hear, see, and feel the presence and attitudes of others. Their human qualities persist—of needing loved ones, of interacting with many others, even of fearing desertion. We should honor them for their humanness and for their valued past in our lives and for their contribution to their families and society.
A continuing involvement is essential for multiple reasons:
1. Most of all, there is still a human there, one who likely needs you. Thoughtful engagement will bring out emotions, feelings, and motivations for social connection.
2. Maintaining involvement might matter for your mental health; continue to support your spouse. You have a long, intimate history together.
3. There is great value in personally knowing the people who are directly involved with their care. It is important to be involved in decisions about treatment.
And a degree of “moving on” is also essential for many reasons:
1.Your mental health can deteriorate if all of your mental energy is consistently focused on the dementia difficulty.
2.You need to have other activities, such as going to movies and concerts, out to dinner, hiking. And you want to have companionship. And love may be a need.
3.Your other loved ones (children, relatives, good friends) may tire of a constant focus on the spouse with dementia.
4.You need to make other contributions--to your friendships, family, community.