Several weeks ago, there was a letter in our local paper asking the advice columnist her advice. Her husband had had surgery on his brain. The tumor was not cancerous and for that she was thankful but her husband is now different. Not a lot different but enough so she knows he is not the man she had married. She was still going to work every day, she was going about life much as she had done before. But she had a feeling of dread upon going home and felt she was depressed. Why was she feeling this way and what on earth could she do about it?
Following my father-in-law’s brain surgery, my mother-in-law was later talking to me about the differences she noticed as she walked into the house for the first time, by herself, after all she had gone through with Roger’s illness. Betty and Roger had lived in the same house for more than 40 years. “It all looks the same, doesn’t it?” I asked her.” Yet it’s all wrong. You can’t see it but it’s everywhere. It’s surrounds you.” I have been through that very thing twice in my life. The differences I felt at the time were so profound and yet at the same time invisible. I had asked Betty if she had felt the same way. Her answer was, “Yes.” I would guess if the woman from the advice column felt the same way, she too would have said yes.
I think many of you reading this post will know exactly what I’m talking about. The moment you walk into your house after the Alzheimer’s diagnosis. It’s all different because life is now very different. What is it I’m talking about? It is everything you see, every odor you smell, every noise or whisper you hear, it is in the air. It is all encompassing.
I knew life would never be the same, but I didn’t have time to sit and think about it too much. I knew life wasn’t ending, Mike is still here, and I’ve learned through past experiences, coping skills are going to be required. Life was all the sudden very different and our future was not going to be what we had hoped for. But we still did have a future, didn’t we? The feelings were all jumbled up and mixed around because we still do have a lot of joys and laughter in our lives. Somehow even with Alzheimer’s we still laugh and enjoy our lives. The juxtaposition can be very stark.
Pauline Boss has two excellent books about this very thing. “Ambiguous Loss” and “Loving Someone Who Has Dementia.” I highly recommend reading both books but the second book really speaks well to our needs. Ms. Boss has a very clear and concise way of helping us ride the wave of unclear loss.
Several years ago, I was married for about six months to Steve. I had come home from a church meeting and within minutes of arriving home he collapsed to the sofa. He was taken out of the house barely breathing and was soon to be in a coma. Lots of things happened between his collapse and my very wrong notion that if he was still alive he would be okay. I came to understand he was without oxygen for at least eight minutes. Eight minutes is a very long time for your brain to be without oxygen. He sustained severe brain injury. Coping with the life altering decisions at that time was a huge challenge. Steve was never going to be the Steve I knew ever again. I didn’t know what I didn’t know. But I was sure going to be finding out.
I had a similar feeling when we were told Mike had Alzheimer’s. Of course, I knew this was a disease happening to Mike and my heart lies with this man. At the same time, I had a very human impulse morphing into hard-drive. I could only think about myself. How I was going to cope with another marriage changing because of something outside of our control. I was once again called on to find a way to balance two very different skills of living my life co-existing at the same time.
Ms. Boss explains it this way, “Of all the losses experienced in personal relationships, ambiguous loss is the most devastating because it remains unclear, indeterminate.” Think about the woman I referred to in the beginning of this blog. Her husband is there at home, his appearance was still the same…and yet…. life did not feel the same. There was a laundry list of items he could no longer manage by himself and yet there were many things he could still do on his own. She kept coming back to this, “My husband is still alive, I shouldn’t be complaining but….” Her question was ultimately, “What’s wrong with me?” Her husband is still alive so what’s there to grieve? In my experience, she needs to have someone help her find her way through the next steps of her life. She has some very difficult experiences ahead of her that will be hard to manage on her own. She’ll have to co-exist with grieving and living for a while as she is coping with her husband’s changes.
Some of us like to speak of “closure “when talking about grieving a loss. It wouldn’t be surprising if some very good-natured friends and relatives have told the woman all she needed to do was to find a sense of closure with her past. Put that part of your marriage on a shelf and just move on. How can she do that when her husband is sitting right there with her for dinner every night? Closure is too hard of a task when it comes to a loss of this nature.
Along with Ms. Boss, I don’t like the term closure because it boxes us in to time limit. Do we grieve a death of a loved one in three weeks and then it’s time for closure? Maybe some will think since we have three days off work after a loss we should be done with the grieving? How about a divorce? Two weeks? How about losing your job of 20 years? One week? We can be tough on ourselves. I would love it if I never heard the word “closure” spoken ever again!
The losses I am talking about are indeterminate, with no real definable time limit. These losses are very personal and hard to navigate through by yourself. I will say this again, closure is too harsh. We need to think of coping skills, not closure. If I were forced to think about closure and Mike’s Alzheimer’s it would something way off into the future. It isn’t even practical to think about closure now.
Now that we know that dementia is an “Ambiguous Loss” we can start to learn what to do to cope. This is very challenging. You will need a team to help you navigate through all of this.
Here is a snap shot of what I’ve done in the past and what I am starting to do with Mike and our situation. I hope to talk more about self-care as time goes on. Let me know if there is more you’d like to hear.
I’ve had very good therapy as I navigated through Steve’s illness. I’m sure I will rely more on this kind of help as time goes on with Mike’s Alzheimer’s. I would have been lost without my therapist. She had such a clear head and could calmly talk me through the life I was living and how to learn to cope with it.
It takes a village. I never forget this phrase…ever. Right from the onset I knew Mike was going to need way more interaction with people than what I could give him. I needed the neighborhood to be in the loop of information upon his diagnosis. I understood how our neighborhood worked, we all watch out for each other. It would be noticed if Mike was no longer leaving for work each morning. We were very up front with everyone in the neighborhood from the start. We have great support within reach and I have relied on that structure more than once. Mike seems to be our “mayor” these days. He and our dog Max, take a long walk every day, sometime twice a day. They keep their eye on what’s happening in our neighborhood. Our neighbors have come to rely on Mike’s updates! He finds lots of people to chat with and that makes me happy!
Our families have been with us in every way possible. As time goes on I know Mike’s son and daughters will become more and more involved with his care. It is a loving and gracious relationship that is a joy to be part of.
I have learned in the past to let some things go. I’ve been called naïve, aloof, uncaring, but I’ve had to learn to let some of the stuff float away. At some point, you will have to take stock of what is important in life and what must be let go of. I had to learn to live in the moment which can be easier said than done. We live in a world that likes to make plans. Plans don’t always work out. More coping skills will be necessary for me in the future.
If Mike is having a tough day I ask him if he realizes what is going on with him. It’s usually is a “no”. In which case, I must remember it is the disease and not Mike. We power through those moments. Probably will be more days like this in the future. He struggles with things that make him angry. It gets harder and harder for me to sit through his tirades. What comes out of his mouth is not the Mike I fell in love with years ago. It is a balancing act and can be very challenging. More coping skills are needed here as well. These are the type of days that I need to do some rescheduling around. They aren’t good days for Mike and I know this about him. Plans are changed and that’s okay.
Loving and caring for someone with Alzheimer’s creates a huge duality. I am grieving the loss of my husband and what Alzheimer’s has and will do to him while still caring for the man I married. It is the elephant in the room, literally, it cannot be avoided. Somehow as time goes on I will have to embrace this knowledge more and more. I will be finding new ways of coping with this duality as time goes on. It will be a continuous job for me.
I hope to write more on this topic. As care givers, we need lots of support and if I can ever be of any help to anyone all you need to do is ask! I will help as best as I can.