Warning–This is a long one.
Yesterday, April 21, was my birthday. I wish I could say it was a happy day, but it wasn’t. Except for the great time I had with my wonderful students, it was one of the saddest days of my life, and not because I turned 60.
I was looking forward to turning 60—age doesn’t bother me, never has. I’ve never understood people getting uptight over “milestone” birthdays beyond 16 and 21. Maturity, and the experience that builds it, is something to celebrate.
For as long as I’ve known my husband Bill, he has spoiled me with love and treats on every birthday and anniversary. Flowers and cards sent to the office. Candy. Gifts like jewelry, Hermes scarves, camera equipment, you name it. Every birthday and anniversary was an event.
Bill hasn’t known when it was my birthday or our wedding anniversary (May 1) for several years now. Valentine’s Day comes and goes. Christmas and Easter mean something because of the special liturgies at church, but half the time he doesn’t know what day of the week it is.
I truly don’t miss the gifts, the cards, the flowers. I miss the companionship. I miss the stimulating conversations over dinner, or a TV show, or while cleaning the kitchen and doing laundry. I miss him responding intuitively with a hug or sympathetic look when I’ve had a bad day or don’t feel well. I miss reading the Sunday New York Times out loud to each other and having a good-natured argument over some stupid politician. I miss sending him out to the store to pick up that one ingredient I didn’t realize I’m missing until I’m half way through preparing a new recipe (Now I have to drop everything and go myself).
And yes, I miss the affection.
My soulmate is gone and what’s left is the physical shell of the guy I married (although that physical body is in better health than mine). The memories of all our travels, our happy times, our plans for the future, are mine and mine alone. He can’t remember the cats’ names. When will he forget mine?
I go to our Alzheimer’s group and see women stronger and much older than me who have been dealing with this disease in their husbands for 10, 12, 15 years. I don’t know how they do it. They have children and siblings to help them, grandchildren too, but it still seems unbearable. I have no external support. We have no children. Bill’s brother is disabled and I’m the only one who watches over him, too (a second caregiver role I don’t talk about). He can’t help me or Bill. My brother told us to take a hike more than two years ago when he found out Bill had Alzheimer’s Disease because he dealt with that with his mother-in-law and refuses to do it again. I haven’t heard from him since March of 2013. He’s my only sibling, and there are no nieces or nephews.
Alzheimer’s is the cruelest disease. It not only steals the memories, cognition, physical abilities and eventually the bodily functions of the person suffering from it, it robs the family of their loved one and lifestyle long before that loved one physically dies. Caregiver stress has been shown to affect the health of the caregiver, and at least one study indicates long-term caregivers are at risk for a shortened life expectancy.
There’s a term for one of the feelings caregivers suffer while their loved one is still alive—Ambiguous Loss.* Caregivers for people with dementia suffer the painful paradox of living with a person who is physically present but sometimes psychologically absent. The rollercoaster ride of good days and bad days exacerbates the ambiguity of the loss.
Psychotherapist Tara Hedman defines ambiguous loss as the “loss of heart.” The caregiver feels alone, even when the loved one is still at home. Depression, confusion, emotional numbness, paralysis set in. The caregiver’s priorities change, and uninformed outsiders don’t “get it.”Friends and family members drift away, either because the caregiver is too busy, emotionally unavailable, or because they don’t understand the disease the caregiver is dealing with. At a time when a caregiver needs the most support, the most supportive persons in his/her life disappear.
And sometimes it’s worse than that. What follows is the incident about finding out who our real friends are that I alluded to in a previous post.
About a year and a half ago Bill and I withdrew from our married couples group at church because it was just too hard to participate in a group that was focused on marriage enrichment when our marriage had become a roommate relationship. Unlike situations where couples may struggle in their marriage, or happy couples might want to keep the fire lit, we were dealing with an irreversible medical decline, and participation in a marriage enrichment group was, frankly, depressing to me.
I was criticized by some and supported by others for making this decision, and while I miss the regular socializing, I don’t miss the feeling of ambiguous loss as we discussed the marriage enrichment videos and books. It was the right thing to do.
A few weeks later, in a reflective mood, I posted on my Facebook page a video from the musical Cats, which Bill and I saw in London in 1983. Bill does not remember seeing that show there—I’m not sure he remembers going to London. Oh, he’ll say “Yeah, I remember that, it was great!” when prompted, but he doesn’t independently remember much of anything more recent than about 1971, and he’s starting to get that stuff wrong, too.
That same week I found this article about Alzheimer’s Caregivers and posted it on Facebook. I had suffered a series of disappointments with groups and individuals who made promises and didn’t come through. I was bummed. Shortly afterward I received an email from a gal in the marriage group asking me what was wrong. Assuming it was a private exchange with a trusted friend, I told her (without mentioning names) about my disappointment in people I had counted on for some much needed help and how frightened I was to see new evidence of the costs associated with Alzheimer’s care. I vented a little about how annoying it is to hear “Tell us what we can do to help” and then have people drop the ball when you do.
The email, which I thought was between the two of us, was forwarded to the entire marriage group with the word “ugh” in the subject line, and all hell broke loose thanks to the “reply all” button. As is inevitable with such exchanges, the tirade escalated before it was “accidentally” forwarded to me. From what I could tell a parallel email string was also going around, and someone was going to call me, but never did.
I was devastated, but fortunately not alone when I discovered the email—I was with some very trusted spiritual advisors at an event at another church.
The email exchange was remarkable in its cruelty, given that it was written by people I trusted in several faith sharing groups. I was accused of not following up on the “resources” they had referred me to (one never returned my calls, others I was already in touch with, and one couldn’t help). I was labeled ungrateful for the help this group had provided us. They claimed they fixed my pool pump (when in fact they referred me to someone who would supposedly provide parts and labor at lower cost that turned out to be more costly in the long run—and I never complained). I was called a whiner. But what really hurt was the repeated implication I was not providing my husband with good care.
The “best” of the cutting comments and know-it-all attitude actually showed ignorance of the true situation–one individual wondered why I would need respite care, since I have a job. (When I relayed that comment to a professional at the Alzheimer’s Association the response was “That woman needs to walk a mile in your stilettos.”) The vitriol of the accusations that I was criticizing THEM, when they clearly didn’t read the forwarded private email carefully enough to know none of them had ever been involved with the projects mentioned, was particularly painful.
I wrote a considered, point-by-point reply to each accusation, the draft of which I ran by a trusted spiritual guide for review, and forgave them, but I never received the courtesy of a response from any member of the group. Oh, a couple apologized for my seeing the email string, but not one admitted they had misunderstood the forwarded email or felt bad about the pain they knew they caused.
One person offered a token apology in person, and has not been seen since. Another is friendly on Facebook. A third can’t look me in the eye, and avoids me completely at church functions. Others are cool but cordial. One couple who was out of town that weekend saw the email tirade and told me later they looked at each other and said “WTF?” One member of the group who made unkind comments did show up unannounced with food when I was laid up recently after back surgery, which was greatly appreciated. But that’s it. They mostly act as though nothing happened, or as if we’re invisible.
Obviously I’m still bleeding from this wound. I might not be if it ended there, but it doesn’t.
This whole thing happened in the fall of 2013. Mutual friends (not members of the group) hold a huge New Year’s Eve party at their home, and another one on July 4. The day after Christmas I received a card in the mail that appeared to be a late Christmas card. It was addressed with a label—not unusual these days—and inside was an unsigned “Happy Holidays” card with the following printed message on a separate slip of paper:
“Please know that you and Bill are no longer welcome at the ____________’s New Years [sic] and Independence Day holiday parties. Bill’s Alzheimers [sic] is too awkward to deal with, and you are both to [sic] unpleasant to be around.”
Alzheimer’s caregivers apparently get used to people drifting out of their lives, but how many are told outright they are not welcome?
I could have ignored it and gone to the party anyway, but I was suffering from what was later diagnosed as whooping cough, and chose to stay home. When I posted on Facebook that we were doing New Year’s at home, the first person to “Like” my post was the person who delivered the harshest invective in the email string.
I doubt the hosts of the party sent the card, but clearly somebody who is among our overlapping social circles did, and it makes me uncomfortable enough that we haven’t been back for either New Year’s or July 4. And yes, that makes me sad. Socializing is good for Bill, and this person, whom I suspect is one of the ones so concerned that he wasn’t getting enough socializing or good care, just denied him of one more opportunity. That person also denied me of much-needed socialization and the opportunity to catch up with people I rarely see except at these two gatherings. He or she is dealing with his/her personal discomfort by trying to control my grief, which I’ll get to later.
I think I can be forgiven for saying I’m uncomfortable around the people in that group and have completely lost my trust in them—and most everybody else, too. Or maybe I’m just a chicken-shit for letting them win.
So that’s another ambiguous loss to face.
When I started writing this I didn’t expect it to go in this direction, but it’s been therapeutic, so bear with me—I’ll get back to my original point. My doctor, two priests, two Stephen Ministers and a psychologist, all of whom I consult with regularly, tell me it’s good to get it out. They tell me to take care of myself, rediscover my hobbies, and try to find time to serve others in addition to my caregiving duties and my teaching (this despite the criticism in the email string that I’m being selfish for wanting to do all those things). I need to take care of myself, and that includes doing a few things just because I enjoy them.
I keep a journal, and was horrified to learn last spring that Bill found it, read it, and (since the church was still 6 blocks from our house) walked to the church with it insisting somebody show it to our pastor. I don’t know what he thought the Padre could or would do, but mercifully he was out of the office. A staff member called me to tell me he was there, horribly upset, and another trusted staff member was trying to comfort him. I never let on to him that I know he found it, but as bad as it felt to have that wound re-opened I felt good to know the Bill I married was “still there,” still loyal and caring, somewhere in the foggy recesses of younger-onset dementia.
As I turn 60 I’m mourning while my loved one is still alive. I’m mourning the loss of companionship—not just from my husband of 33 years (as of May 1), but the loss of the life I had and the life I hoped to enjoy over the next 25 years or so. I’m frightened about the financial burden ahead. So is every other Alzheimer’s caregiver, especially those of us dealing with younger-onset Alzheimer’s in our loved ones.
A recent article in the Huffington Post addressed ambiguous loss, which affects more than just caregivers. The author cites many of the clichés grieving people hear from sincere, well-meaning people trying to help. To paraphrase:
‘We hear “but you still have so much to be thankful for,” … “God must have something better in store for you….”
‘It matters little if these platitudes are true or not. They send a message of shame into a heart that is broken. They indicate that feelings of loss are invalid. It’s much more difficult to sit with someone who is crumbling under the pain of grief than it is to say something pithy and remove one’s heart from engagement.’
People who make these statements include trained professionals in the counseling field, friends and even strangers. They make these statements because they’re easier than providing real support, and those of us who continually hear them either become angry or more disillusioned. These people’s efforts to control other people’s grief probably means they are uncomfortable with their own issues. As Hedman, a psychotherapist specializing in grief counseling said, “Dismissing other’s pain allows us to dismiss our own.”
Hedman emphasizes caregivers have a right to feel sorrow, grief, heartache, loss, and pain. “You have the right to feel it as long as you need. Feelings have no moral value. They just are.”
As I start my 61st year I unambiguously refuse to give in to the uninformed, judgmental voices of self-centered people who have everything they desire but still haven’t benefited from loss. Yes, we benefit from loss when we learn from it. Without loss we cannot truly appreciate what we have.
As I struggle with the ambiguity of what’s ahead I will define myself with “both/and” statements like these recommended by the Family Caregiver Alliance in their guidelines for caregiving and ambiguous loss:
- “I am both a caregiver—and a person with my own needs.”
- “I take care of both him—and myself.”
- “I both wish it was over—and that my loved one could keep on living.”
- “I am both sad about my lost hopes and dreams—and happy about some new plans and goals.”
What are the “both/and” statements you’ll use to define the rest of your life?
*There are two types of Ambiguous Loss. Type One occurs when there is physical absence and psychological presence, as in catastrophic losses such as unrecovered plane crashes, kidnappings, MIA soldiers, natural disasters, etc. Parents giving up a baby for adoption (and some adopted children), children who have parents absent after divorce, and separated siblings also suffer this type of ambiguous loss. Type Two ambiguous loss is the opposite—the “lost” person is still physically present but psychologically or cognitively absent. Loved ones of people with Alzheimer’s Disease and other dementias, traumatic brain injuries, autism, mental illness and other chronic physical illnesses often suffer this type of loss. This blog post focuses on Type Two Ambiguous Loss.