My wife Marja and I were at a silent retreat with others from our faith community this past weekend. We entered the Great Silence after Friday dinner and remained silent until after Sunday morning worship. We slept at the Inn where each of us had a separate, simple room with a bed, desk, chair and sink. We had meals and met together in the Lodge, a separate building that has an almost sixty-year history of continual silent retreat. It is a place that invites one into silence.
I’ve meditated almost daily for at least fifteen years and have found quiet only in the midst of very long retreats, never in my daily meditation. With the diagnosis of Alzheimer’s, I had hoped (illogically, I suppose) that the slowing of my thinking would make my mind simpler and quieter, my meditation deeper. No such luck! As my mental abilities have decreased, it’s been just as noisy in there as ever. I had a small hope that over the weekend of retreat, I’d find a bit of inner silence, but all I experienced was the “monkey-mind” of constant chatter.
But there was something else both more beautiful and scarier.
I was sitting in the Lodge looking out the floor-to-ceiling windows just before evening worship when Marja walked down the path through the woods from her room. I was suddenly aware of deep longing. She radiated an inner light. Lean and strong, she walked gracefully as if she belonged to those woods and that path. She smiled easily at several of our friends. In those few moments, the fullness of her inner beauty was revealed to me in a way I’d never felt in over fifty years of our relationship. In that moment I felt extraordinarily grateful that we belonged to one another.
But then the future broke in. As I watched her exchange glances with some others, I felt strangely excluded from those relationships. Suddenly, it was five or ten years down the road, and Marja had relationships with others that I was incapable of sharing or even understanding. I felt immediately jealous: I wasn’t able offer her what she needed and she had to look elsewhere. It was as if she were having an affair. In that moment, I felt jealous of any other relationship.
Although they became muted, the feelings stayed with me as Marja sat across the room during the short worship that evening. Afterwards, I went outside into the dusk, and sat on the steps overlooking the meadow and woods. As Marja came out the door, I caught her eye and she sat next to me. We clasped all four hands together. Feeling our bodies touch, holding one another, I was comforted and felt safe again.
The jealousy was “real,” even if the imaginings that prompted it were not. I “know better” than to live in the future like that. But that’s where I lived for those moments of jealousy. I was fearful of what the future might bring. Feelings of isolation are what I fear the most and what, I suspect, many with Alzheimer’s suffer greatly from. And jealousy has the potential to isolate me from the one with whom I share so much, who will be there with me forever.
Everything that happened in those few minutes bordered on the mysterious. Part of me feels very grateful for the emotional openness that has occurred as my illness has progressed. Part of me is scared. Those feelings, both sublime and painful, would not have been possible for me two years ago.
In the end, of course, it’s precisely this living in the future that causes so much of the pain of Alzheimer’s. I’ve not been falling for it much, but I sure did this time.
Thank you for sharing your insights. Wonderful post. So important was the idea that living in the future will only cause pain for those on the Alzheimer's journey. As a Care Partner I have discovered that living in the moment and creating joy every day is my goal.ReplyDelete
Your exquisite post resonated and brought on the tears. The fear of isolation is such a powerful one as we think about increasing disability and loss of self. I am a retired attorney living in a small town near Seattle who was diagnosed with probable Alzheimer's 5+ years ago. I try to stay focused on the present where I experience a life surrounded by a loving family, a dynamite support group and community of friends, and interesting activities to stimulate my brain. But there are moments...ReplyDelete
Your blog posts (particularly the last two) speak to me and for me. I can't thank you enough for your willingness to share your journey with others in this way.
I am early on the journey, but I can imagine that despite my preparation, my desire, my will and even the external reality, I will feel very isolated. It's part of the human condition even without Alzheimer's and must certainly be worse when I can't really enter into the experience of others nor they into mine. But I believe--on the basis or many communications from others as a result of this blog--that it does not have to overwhelm me. But there will be moments ...Delete
Thank you for your vulnerability David. Your blog has been a breath of fresh air for me in a world that has been pressing in on me.ReplyDelete
My mother is in a long term care facility, suffering from dementia bordering on final stages (AD has never been diagnosed to my knowledge). She's 90 years of age, has been a widow since the age of 42, extremely independent and perfectionistic (some would term it obsessive compulsive)to the point of being funny at times. Cognitively she functions at about two years of age. The only activity she enjoys is doing preschool jigsaw puzzles with a lot of assistance from me. She's very deaf, sees well though, and is mobile using a walker. She spends a huge part of her day napping in her recliner.
You mentioned that you'd like to hear some stories about the dark side of the disease. At the risk of providing "too much information" I'll share what I see as the painful times I spend with my Mom. She's at a stage now that she refuses to remove her socks or her bra (either at bedtime or showertimes). Some nights she refuses to even change into her nightgown to sleep. She has to be physically forced to have a shower, and she screams, hits, kicks, and shoots daggers with her eyes until she's finally completely wet, then she usually relaxes and actually says it feels good. She becomes totally obsessive about drying every single square inch of her body before she allows us to dress her. Obviously, I always need to be there to assist every time she has her shower. I've heard from the nurses and read online that it is common for patients to be terrified of water when they get past a certain stage in the progression of the disease.
I find this extremely draining and even have dreams about it for days afterwards. Yet, for my Mom, as soon as she's dressed and comfy in her recliner, she's as happy as can be and doesn't even remember that she's had the shower. She tells me that I'm "wonderful"! Talking about it now, it sounds hilarious, but believe me, it's no fun for me to go through every week! I'm 63, working full time, treasurer of my church, suffer from migraines, fibromyalgia/chronic fatigue, osteoarthritis and osteoporosis. I'm hoping to be able to retire soon, but in the meantime, I have many days when I just pray the good Lord will be merciful and take my Mom home. That probably sounds pretty selfish, but I'm thinking of her too. It seems to me there's not much, if any, quality of life when all she does is eat & sleep. She's on a lot of medication as well, even though we've requested that be cut back to only what is required to keep her comfortable.
Sorry this has been so long. I guess I needed to vent. Thanks for letting me! Most of the time, I really am quite a happy, positive person, believe it or not.
It surprises me that the facility she is in can not come up with better options. Even though she immediately forgets the outburst she is still experiencing it and of course it has an awful effect on you. "Forced to take a shower." That phrase is chilling! What about sponge baths? My brother and I had my mom in a very nice expensive place, but they wanted to medicate her for "disruptive" behavior. She had a habit of grabbing and pinching when she could not communicate what she wanted. They were not able to deal with it in any other way. We moved her to a more modest nursing home where they did not rely on chemical restaints, and there were no longer issues like this. We knew we had found a good place when we saw the low turnover rate for staff/aides. Be sure to take care of yourself! Your mom would want you to do that no matter what.Delete
I can easily believe that you are mostly quite a happy, positive person. As a person afflicted with this disease, I am feeling more and more that I have little reason to fear: This is, apparently, not usually a painful disease. But I cannot even imagine the toll it takes on caregivers like yourself, and I do fear for my wife Marja. It hardly seems at all selfish to me that you sometimes wish your mother were gone and you could resume a more normal life. I can't imagine people who care for people with Alzheimer's, especially if they are doing it basically alone, would not wish for relief.Delete
So thank you for your comment, and I'm happy to provide at small place to vent.
my husband has that same felling with our oldest son so he can only hug me hello and good bye if he kisses me that little jealous monster comes outReplyDelete
How very painful for you and your son ... and for your husband, I would imagine.Delete
jmojo, the facility is wonderful in every way. It's just in this one area that we haven't been able to find a way to make the shower more acceptable to Mom. We've tried many different tactics, and yes, they do provide sponge baths, but even then she won't let them remove all her clothing. Thanks for caring enough to reply. I'll try to take your advice.ReplyDelete
David, I'm sure your wife will be just fine. You'll probably be a model patient!!
I mean no offense in this statement and it just might show my naivete so please don't be mad with me. I just wonder if "ignorance is bliss"? I say that to say the disease is definitely an awful way to end life, but it sounds like you won't be PRESENT in it's awfulness. To hear about the QOL issues always brings back memories of Jack Kevorkian (I'm a Michigander). To hear that mom has to be held down for a shower, versus a sponge bath and the trauma it seems to bring on is heart wrenching both for her and you, but it appears that she isn't even aware of the trauma. I have a friend who's mom has been diag as Dementia, but not Alz but she does not remember her youngest son (he's nearly 60!) nor does she remember her two oldest boys (they were in military and prison). She barely remembers her care-giving daughter. While the family agonizes over the cognizant losses, she seems fine.ReplyDelete
David, that jealousy while hurtful to you can also be seen as humorous. How wonderful that you are falling in love all over again and hopefully will have more than a few great years with your newest love.
One of the problems that care institutions often get into is the need to force their residents to conform to regulations ... like regular showers, changes in clothes, whatever. A good parent will realize that directly confronting his two-year old with a "no" is just asking for trouble and will find away around the conflict that is gentler. It can't always be done, of course, but I must believe that something similar is can be found for people with dementia. Perhaps with Anonymous's mother something couldn't have been worked out, but I suspect that one doesn't have to FORCE Alzheimer's patients into submission too often.
As far as Quality of Life, I think it's a complicated issue. Who is judging whether the quality of life is adequate, the demented person or the observer? Several people in these comments have recounted several stories of frustration on the part of the demented person but they seem to be far outweighed by wonderful stories of richness. Unfortunately, what we "normal" people may judge as terrible quality of life may appear quite different to the people experiencing it. Ultimately, it seems to me, it's the perception of the demented person her/himself that counts.
Enjoy the 'inner light'. Enjoy the bliss. Enjoy the jealousy. Enjoy the isolation. Your wonderful realizations will continue. Now. In the present (eternal) moment. We share a love of meditation (mine called zazen). You've earned it.ReplyDelete
Do you know how many bloggers would love such a faithful group of people who come to share and comment on your posts? I love your blog and I read it for knowledge and perspective, not because I have a loved one with any diseases at all. Perspective is just about everything, I think, when dealing with any problem or issue. Thanks so much for welcoming all of us!
I do have some awareness of how fortunate I am to have this small community of people who read the blog and share their comments. In those comments have been some wonderful stories; I hope others have seen the magic in them, too.Delete
Wonderful post, but I wonder if this happens to all of us, and not just those with Alzheimer's/dementia. I learned something awhile ago when I used to worry about the coming years and where I would be. I learned to Not Look Forward, and it helped. You now have brought it back to me for more meditation.ReplyDelete
Thank you David for reminding me.
You're right, of course, Rose. Both you and Bea, above, are aware that so much of what I'm "discovering" was just as true before this disease and it is true for all of us regardless of whether we have the disease. For me, however, many of these insights have been clearer through my eyes that have been cleared by my diagnosis.Delete
Thank you David! While my mind actually has become less noisy (perhaps because I have simplified my life considerably), I have also experienced the incredible fullness of 'present moments' -- love and fear, expansion and contraction. I am reminded of Rilke's words:ReplyDelete
“Let everything happen to you
Beauty and terror
Just keep going
No feeling is final”
That is certainly the direction I want to be traveling. Simplifying has been a life-long process, and this disease is another great opportunity for further simplification.Delete
Unlike the old "county poor farm" of the past, usually a nursing facility will do as much as they can to make an individual care plan for each patient. Some people fight a bath in the morning, but when they are tired in the evening, will go along with it much easier. We just have to figure out when they have an easier time. They can refuse baths. until their right to not bathe infringes on everybody else's right to smell. lol.ReplyDelete
When you were talking about your jealousy over the loss of the future with your wife, it reminded me of when I had finally met my stepgrandmother (married to mygrandfather for over 50 years, she had never met his son from a previous marriage that he kept secret from everybody). So I met a grandma when I was about 24 years old. I went to visit her, and we were out on the porch talking. And she said, "I may not be here next time you drive through." and my answer was "I may not be here either. None of us have a guarantee on life." And she agreed. She did die before I went through town again. But I could just have easily died in a car accident driving home. Nobody is guaranteed a future. About five years ago, a nurse I worked with, about 40, her daughter, about 8 and her Mother were in a major accident with a semi, just miles from my home. Nobody survived. As soon as we all heard, we all lit up the phone lines calling everybody we loved to remind me that we loved them. That little girl, and even her Mother never got to have the 60+ years we have enjoyed. So I guess we should be grateful.
Thank you for your blog writing. I check it every day, just in case you have added a message.
Hi, Lee An:Delete
One of the things I need to do in the near future is visit a few Alzheimer's care units to see what they're like: who the patients are, what the stages of disease are, who the staff are, and so on. I really don't yet know much about the individual care plans and what kind of flexibility they offer. I have assumed that you are working in such a facility. Your perspective has been helpful in your comments.
Thank you for the article! very informative.ReplyDelete