Someday is Today

Last fall, long before we sold our home, and I started renovating a new home, I made plans to go east to see my mother. I haven’t written much about my mother because it is complicated—what mother/daughter relationship isn’t? For years, we each wanted to get along better but we never managed to do so. Then in May 2013 she was diagnosed with Alzheimer’s and everything changed.

Alzheimer’s is a sad disease. I have nothing new or profound to add to the heartache that this cruel wasting away of a brilliant mind means. But I can add that much to my surprise, my life has changed in some ways for the better since her diagnosis.

First of all, every child of an Alzheimer’s patient worries about getting it themselves. And odds are that many of us will. This is not a pleasant outlook, but it forced me to make some decisions about what I do and do not want for the rest of my life—with or without Alzheimer’s. Within a week of her diagnosis, I found myself back on a yoga mat, after having been absent for many years. It was always one of those things that I thought would be back in my life someday. My mother’s Alzheimer’s diagnosis made “my someday” happen today.

Second, for some strange reason, our relationship started to improve dramatically. Over the years, we have both wanted a different relationship with each other, but neither of us managed to make it happen. We were both disappointed and had resolved to accept the relationship for what it was and was not, but deep in our hearts we both wanted more: more connection, more understanding, more loving. And now we have it.

She is suffering from Alzheimer’s; this is not a subtle disease. But she is still there and while visiting her last week we had some beautiful heart-to-heart connections. Alzheimer’s may have robbed her ability to remember words and where her glasses are and even large batches of information about her life, but it hasn’t affected her ability to open up her heart. Over coffee, we both talked about how much we are now enjoying our current relationship after decades of yearning for more from each other. Ironically we both think that the other has changed while the reality is that we both have. And this has allowed us each to open up our hearts to each other.

Alzheimer’s may be taking away all the details of her life, but it has left her heart intact. The bottom line is that she can still send and receive love and really what more is there?

Here are some photos of me with my mother, my brother and my mother’s husband on my recent visit east. She doesn’t like her photo taken and I know she would not like the way she looks in the photos, but they capture a loving moment of us together that I will remember.


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27 thoughts on “Someday is Today

  1. frank spigel

    Heidi,
    I know of several people who suffer from dementia, one thing your column reminds me to do is be kind and patient with these people. One man that I know of who suffers from dementia, which has gotten worse in the last 6 months.
    I now know after reading your column, I must get to get too angry with this gentleman.
    Frank

    Reply
    1. Heidi BK Sloss Post author

      Kindness and patience goes a long way. I find it easier to offer to my mother, now that she has Alzheimer’s. Sometimes I wish I had extended both to her more often before. But better late than never, right?

      Reply
  2. Amazing Susan

    Thank you Heidi for this beautiful post.

    It’s a testament to the fact that treasure may be found amidst the tragedy. And I’m so glad that you and your mother managed to discover some of it.

    when I read your line “alzheimer’s is a sad disease,” a question arose in my mind: is there a happy disease? I don’t know of any. No one wants to die a long and painful death. No one wants to suffer and be sick. Alzheimers isn’t the only disease that causes suffering, pain and heartache. But for some reason we make it seem worse than all the others.

    I’m coming to believe that it’s not any worse, just different.

    I remember when HIV/AIDS was seen in a similar light; and now? Not so much. People have learned to live with it. I think we will also learn to live with Alzheimer’s disease, just as we have learned to live with life 🙂

    I have felt you soften and change over the past year. It’s good.

    together in this, XO X Susan

    Reply
    1. Heidi BK Sloss Post author

      Thanks Susan, your comments mean a lot to me as I know that you are on the front line of this journey with your mother as well.

      Alzheimer’s is sad, as is cancer (both my husband and I are survivors), as are all sorts of other diseases. I didn’t mean it is the saddest, but a wasting away disease, as Alzheimer’s is, means that those around the person suffers too. In fact the argument could be made that it is as hard or harder on those around my mother as it is her. She has many days when she isn’t aware of what is gone/going and doesn’t seem upset by it anymore either. But as you know, Alzheimer’s isn’t a straight line and of course there are days when she has more clarity and is aware.One of the things I admire most about my mother is that she is facing her future bravely and with a smile on her face and laugh in her throat. Around her community she is known for her laugh.

      And yes, thank you for recognizing my softer side. Her diagnosis has helped my perspective change for the better. Mostly I feel kinder and more patient for life’s small inconveniences. Bigger picture is a great reminder of what I hold dear: love and connection! And I am glad that you and I connect through this alzheimer’s daughter adventure.

      Reply
      1. Amazing Susan

        Yes, what you say is true.

        And I guess I’m beginning to feel a bit Buddhist-like about Alzheimer’s in the sense that the more we look at through the lens of suffering, the more suffering we see and experience. I’m not sure if I can really explain it properly.

        I’ve recently been following Kate Swaffer’s blog (http://kateswaffer.com/). She has early onset Alzheimer’s; she is a “dementia advocate” and founder of Dementia Alliance International. She and others like her aggressively reject being labeled sufferers. I am being influenced by her arguments.

        Yes, there is suffering.

        But where does the suffering come from…? Is the glass half full or half empty? Existential questions to consider outside of our personal experience perhaps?

        In no way am I trying to deny you your experience or I mine. I just wonder if there are not richer and more productive ways of seeing this disease. Ways that would promote a greater appreciation for the breadth of life and death….

        All grist for the mill 🙂

        Reply
        1. Heidi BK Sloss Post author

          Actually the thing of it is that I am not suffering because of my mother’s Alzheimer’s. It was sad at first, especially as she knew what was happening and railed against it. And it was sad to watch such a vibrant and intelligent woman lose large parts of her ability to think and reason and be a part of what is going on around her. Now I watch and while it is hard at times to watch her confusion and see her dependency on others (mostly her husband) I can’t help be see her how she is now: much more loving towards me, much less controlling of everything and everyone, and just open to the experience of what is going on around her. Yes she has good days and bad moods–she wasn’t happy when she had to stop driving or when they thought about moving to a independent living community with various levels of care and other things like that. But the fact is she is a mostly positive person, and while this isn’t the future anyone envisions for themselves she is’t suffering in the traditional sense of the word.

          Reply
  3. Amazing Susan

    P.S. by wallowing in our suffering maybe we compound it. I hasten to add there is a difference between acknowledging and deeply feeling our suffering, which has something to with love and compassion, and seeing it/compounding it in a martyr-like way which feels miserably self- and other-destructive to me. It somehow lessens the human experience.

    These are just thoughts off the top of my head after I have just woken up. May be completely off the wall LOL!

    Reply
    1. Heidi BK Sloss Post author

      Not sure what is ‘hooking’ you about the word suffer, but clearly something in it isn’t sticking with you right! Wallowing in anything is not good in my opinion. ut suffering is not the worse thing in the world and I believe that we can’t got through our suffering (whatever it is) without naming it, identifying it. Denial is how I was raised and I wont go back there ever again! And from what I have seen, unhappy people spend a lot of time being unhappy and making those around them unhappy too!

      Reply
      1. Amazing Susan

        Hmmm. I don’t think it’s the word “suffer” that triggers me, but it could be the way that dementia is “painted” and then perceived and then the perception becomes the reality when the reality could be different. I think I must not be expressing myself clearly… 🙂

        Reply
        1. Heidi BK Sloss Post author

          Frankly once the dementia has set in, it doesn’t look like my mother is ‘suffering’ per se. More it is sad to see so much of her ‘life’ being wiped away. It is those of us around her who suffer knowing who she was and what she was. And as I said before, it is ironic for me because while I am sad to see her ‘reduced’ to this new state, overall I am so happy that she and I connect in a real and tangible way these days. I never would have guessed it would be like this for the two of us!

          Reply
  4. Jen Berkley Jackson

    Heidi-

    Thanks for sharing your thoughts about your mother’s diagnosis and what evolution you have been through since finding out. This hits close to home because I, too, have a complicated relationship with my mom and for the past 3 years or so, I have been dealing with my her increasing confusion about many things that frustrated me to no end…primarily because she wouldn’t accept/acknowledge that things weren’t the same and stubbornly stick to her version of the story.

    I felt like my job was to help her realize what was happening so she wouldn’t put herself in unsafe situations. Now that she has finally acknowledged that, yes, she DOES forget things and get a little confused sometimes (no formal Alzheimers diagnosis…just ‘normal adult onset dementia’ so her doctor says), it has made things a little bit easier. Now I’m a little more patient and don’t feel the need to correct every little ‘miss’. Why rub it in…she KNOWS she is slipping…and all I can do is keep her safe…and step up when that isn’t the case. (I choose my battles much more wisely now).

    I wont’ be surprised when/if she is diagnosed with the big A…but it doesn’t make the decline any easier…

    I’m so happy for you that you had a nice visit and hope that you get more of those, but also know that you can’t expect anything from each visit and only take what comes with acceptance.

    Enjoy your new yoga practice…it will help with all of this!

    Reply
      1. Heidi BK Sloss Post author

        Susan your whole blog is a treasured resource! Thanks for putting your heart into your blog posts on caring for your mother!

        Reply
        1. Amazing Susan

          “Mostly I had heard about Alzheimer’s patients become paranoid and difficult or quiet and withdrawn, and the fact is she might still get that way…”

          Mom became aggressive because of the way she was/is being treated. Others become withdrawn for the same reasons. I think “bad behaviours” can be lessened and even completely averted with the right kind of care. See Naomi Feil and Teepa Snow 🙂

          Reply
          1. Heidi BK Sloss Post author

            I agree that most behaviours are probably as a result of the care being given BUT I also think that part of my mother’s “new/now” behaviour is from her finally letting herself just be herself. In other words I think she was a kind loving child as a child and is once again being that way now that she no longer feels she has to be in charge or in control of herself and her surroundings. So it is partly due to the great and loving care she is getting and partly due to her inner personality coming out. Hope that makes sense.

          1. Heidi BK Sloss Post author

            And thank you for writing blog posts that are moving and educational and interesting!

    1. Heidi BK Sloss Post author

      Thank you Jen for reading and responding. Hard to watch a parent go through something for which we can not do much to help them out. From everything I have been reading, including Susan’s blog (http://myalzheimersstory.com/), I have learned that correcting my mother when she is wrong is not helpful nor necessary. It isn’t just a matter of rubbing it in as you say as much as there is no longer any need for us to disagree on everything as it seemed we were constantly doing before her diagnosis. In fact in today’s call she said something about me being in charge and I realized what a pleasure that was to hear. Now if I could only extend that patience and grace towards me daughter! Good luck with your mom’s care–with or without the “big A” diagnosis–it is hard to watch anyone decline. And you are 100% right–the yoga helps a lot!

      Reply
  5. susan schwartz

    Heidi,
    You have captured with beauty and tenderness one of life’s great paradoxes — that we most appreciate what we have when we are in the process of losing it. It’s inspiring to read how you’re turning this difficult time into a meaningful one. Wishing you continued strength and clarity in the days ahead.

    Reply
    1. Heidi BK Sloss Post author

      Thank you for your kind words. It is ironic that when people hear my mother is going through Alzheimer’s they all say how hard it is and I agree but for completely different reasons. In fact since my relationship with her is so much better I am sad that it took her diagnosis for us to come together, but I am grateful that we are finally loving each other in ways that I have always longed for.

      Reply
  6. Lorrie at www.shrinkrapped.com

    Thank you for another beautiful and heartfelt post. I have heard of other difficult parents softening some under the assault of Alzheimer’s, and it is one of the most poignant silver linings I can imagine. But I am glad it is one you and your mother have been able to discover under difficult circumstances.

    Reply
    1. Heidi BK Sloss Post author

      Thank you for reading and commenting. It was a surprise to me that she and I would come together as she goes through this next chapter in her life. Mostly I had heard about Alzheimer’s patients become paranoid and difficult or quiet and withdrawn, and the fact is she might still get that way, but as long as she is softening and loving, I plan to spend time with her, soaking up the love I knew was there, but just never felt.

      Reply

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