May 172013

Tania and her mother This past holiday season, I had the pleasure of appearing as Mrs. Cratchit in “A Christmas Carol” at The Goodman Theatre.

On several occasions I thought how much my mother would have loved to see me in it. Before I met my husband, my mother was my biggest fan.

When I say my mother would have loved to see the show, I mean the mother who raised me and was always there for me in my young adult life — the mother I knew up until 2008.

That mother saw me every night when I had the lead in my high school production of “Mame.” The box office people knew her by name and on nights when tickets sold out, they let her stand in the back and watch.

Mom always said, “Tania, you have such presence on stage.”

Whether I was performing on Broadway or a storefront theater, my mother was in attendance and always sang my praises.

I am describing my mother before Alzheimer’s.

In 2008 she started slipping away, calling me less and less, repeating herself more and more, forgetting birthdays and asking strange questions like, “What day is Thanksgiving, Tania?” From then on, a different mother emerged.

She was still loving but unable to be there for me because her memory was fading. For instance, she couldn’t remember that I was pregnant with my second child and wasn’t at the delivery like she was with my oldest. She had no idea what was happening in the world. She never asked about my children or husband.  She didn’t know where I lived. She had no idea I was a professional actress.

Mom was a doctor who never left the house without looking her best. She always wore dresses.  She went to the hairdresser every week for a wash and set. She was private to a fault.

In the nursing home she wore pants, let the caregivers braid her hair in cornrows, and shared a room with two other patients.

I suspect that she’d be mortified by the woman she had become, and I had to make peace with that. I didn’t love her any less when she lived in the nursing home. She was her purest self. The essence of my mother — sweet, good, funny, kind and loving — remained.

Photo by  Liz Lauren: A Christmas Carol

Photo by Liz Lauren: “A Christmas Carol”

It stings that she didn’t see me play Mrs. Cratchit; and it pains me that—even if she was still alive—she couldn’t have attended.  She wouldn’t have been comfortable leaving the nursing home, getting in a car or sitting in a dark theatre surrounded by people. I don’t think she would have even understood it was me on the stage.

Alzheimer’s splits a person in two; their life divides into who they were before and who they are afterwards.

I grieve my Mom twice, mourning two spirits but lucky for having known both.

About the Blog Author:
In addition to being a wife, mother, writer, actress and teacher, Tania Richard was a caregiver for her mother, who was diagnosed with dementia in 2011 and passed away the following year. In the short time Tania was her mother’s caregiver, she learned a great deal about the challenges caregivers face.

Learn More:

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  41 Responses to “Grieving My Mom Twice”

  1. Absolutely beautiful. I so identify with Tania's description of grieving two versions of her mother, although my mother (almost 60 and in the advanced stages of Alzheimer's) has not passed away yet.

    • Hi Lauren,

      My mom is 63, and very much in the advanced stages of Alzheimer's too. She has been battling it for 10 years. She's a trooper. You are not alone. Stay strong.

    • I so can relate with Laren Flakes! My mother is 65 and also in advance stages.

      • My mother is 60 and also in the later stages as been suffering for the last 7 years and now in a care home xx

  2. very special !! you're mom is likely still your biggest fan!

  3. For those of us who have lived through Alzheimer's with a loved one, be it a parent, sibling or spouse, we all experience the same things as did this writer.

    Sadly, I did not get much enlightenment from this blog (nothing personal Ms. Richard – I clearly do not mean to offend because Alzheimer's does not discriminate). However, there are a million stories in that naked city called Alzheimer's and I wish more were shared about people's struggles who have lost jobs, cared fulltime for their loved ones and were close to bankruptcy because of this horrific disease. The average man and woman – who are not celebrities and wealthy – who have to deal with losing loved ones voices also need to be heard.

    • How dare you judge her because she is wealthy or a celebrity! Her pain is not any less because of her occupation. I am going through the same thing with my mother and my heart breaks for what Tania has gone through. It was not any easier for her just because she had money. I have struggled over the past year trying to find a nursing home for my mother because she was too young for most of them and the ones that did accept her cost way more than we could afford. Finally my 58 year old mother is now in a nursing facility where she doesn't even know who I am or her grandkids are. Do you think those of us without money have more justification to be heard from. I say kudos to Tania. Let her story be heard and let there be more awareness of this horrific disease that is hutting so many families and shame of you for chastising her for telling it.

    • I have found that people who don’t leave a real name probably are not worth listening to. Beentheredonethat proves my point.

      I was moved by Tania’s writing. We recently placed mom in an Alzheimer’s unit and that was very tough to do. I get what Tania is saying about her mother not being able to come a see a performance. As a high school choir director I put on my share of programs. I also co-direct all the plays and musicals where I teach. My mom would attend every performance until April. It was heartbreaking to see dad there alone and to see the empty seat where mom usually sat. I am still working through that loss let alone the continued loss over the past several years as dementia took over my mother’s memories.

      I think that people process things differently and if your way, Beentheredonethat, is putting others down for what they have or how they share their process then you have it worse than the rest of us trying to make sense of new normal. It’s obvious that you are dealing with a lot. I would suggest that you deal with it the way it makes sense to you without dragging someone down for the way they are dealing with it.

    • how do you know she is wealthy many an actor/actress struggle financially. Even if she is wealthy, celebrity her anguish, anyone's anguish with this disease is not diminished by their status in that way. You didn't offend, but your comment comes off as self centered and narrow minded.

  4. I took care of my Mother at home for 6 years, one day she wondered why I called her mom, she told me she thought I called her mom, because I lost mine,how right she was, I lost her to alzheimers. She passed away June 1st 2012, oh how I miss her!

    Beatrice Elliott

  5. We have gone through the same thing. My mother- in- law had Alzheimer's the last 3 years of her life. She too was very private and wore dresses all the time until the day she died. She was very active as a secretary for over 30 years and bowled in 2 leagues. She never ever missed her 3 grandsons activities even in a blizzard watching football or the dead of heat watching baseball. Every day was different. We never new what to expect, but she was always loving to us. She did give the nursing home fits, but by the time we got there of course she didn't remember anything. She was always missing something, either all the candy we just took her, her pictures(that she put in a drawer) or blankets that were kept in the closet. She would mess up her TV religiously , taking out the batteries to the remote, and change the language from English to Spanish. We would just chuckle. What else could you do instead of crying? She even had unexplained visitors that had passed away 20-30 years before, and didn't remember each time we told her they were gone. She would just cry, so after a few times we just went along with her. Her husband had passed away 40 years before, but he as well came to visit. She told my husband, her son, that his Dad had been living in Chicago! So from then on, we laughed, that when one dies they end up in Chicago! She went down hill fast her last couple months. Did not remember her son, her 3 grandsons, but she always remembered me. And I thought I was always a thorn in her side all those years, but she really did love me! I was and am blessed to have known her, take care of her and she gave me her only child, her son. We have been happily married for 42 years! I know what love is and she blessed me many times over!

  6. Thank you for sharing. We are coping with my aunt's Alzheimer's (moderate to severe stage) and I can relate to your feelings. My aunt, who she was before, was very active, outgoing, and dressed stylishly. The changes are heartbreaking and much like your mother, she would likely be mortified of her new appearance. I have accepted the new aunt but grieve the special aunt that spent so much time with me in childhood. My feelings are similar to your experience which provides comfort to me. You are always a star in your Mom's eyes. God bless.

  7. Thank you for your story, Tania. I lost my mom years ago; though she still lives. I tell close friends that it feels as though she died in 2008. I wasn’t aware of early on-set Alzheimer’s until my mother was diagnosed. What a cruel and stupid disease. I live in fear of inheriting this curse. My greatest hope is prevention of this death sentence in the near future.

  8. I would like to start a walk here in Visalia, CA in honor of my mom.

  9. "She was her purest self." I completely appreciate your remark. Despite my Mom's departure from my world to her world of Alzheimer's disease, though she lost her ability to remember and speak and react, she never lost the essence of who she was. She maintained her gentle, loving self.
    Our similar experiences may not be typical for all children of parents with Alzheimer's disease, but like you, I consider myself lucky to have known my Mom "before" and "after."

  10. Absolutely heart felts story. You are not alone in this battle against Alzheimer's, Tania. Millions of families are facing this same disease. My family and I are going thru the same thing with my dad. This is why it is so important for me to honor him by being involves with the walk to end Alzheimer's.

  11. I miss my Mom too….we lost her in Nov. 2012. I know what you mean about grieving her twice. I did connect with your blog Tania, thank you for sharing! My Dad was the main caregiver for my Mom. My older sister helped often because she lived close by. (Thank God!) I lived 10 hours away so I wasn't able to see my Mom as much as my sister but I did go see her every few month. Mom was slipping away and I knew she would forget who I was because I wasn't with her every day. That did happen…and it ripped me apart! I missed the Mom I knew….Like your Mom Tania, my Mom still had a loving and funny streak in her that remained constant. She would sing, dance, laugh…that part of Mom was still there…but then she started to slip away even more…and did not communicate and have to be fed….then she just stopped eating, 2 weeks later she was gone.

    Alzheimer's is such a horrible thief! Not only does it steal our loved one's memories… then their lives, but it also changes those who care for them, who love them and can make it mentally, physically and financially debilitating!

  12. Nicely said. I discovered through my own mother's decent into Alzheimer's that the real gift in this type of loss is that after the disease strips everything else away, dignity, vocabulary, memories, et. al. the essence of the person does remain. What a privilege to get to know the real essence. Lucky you that for your mother that essence is — sweet, good, funny, kind and loving.

  13. My mother, too, had Alzheimer's Disease. She was once a well known, well dressed, organized professional lady; it was very painful to see her slip away over five-plus years.

  14. I understand all too well. Thank you for sharing your story about your Mom. She sounded like a really great Mom, friend and person.

  15. So beautifully and lovingly written. Thank you for putting into such poignant words how so many of us feel.

  16. beautiful this describes my mom except my mom was an RN not an MD; we are not actresses but are in other walks of life, but all else so similar, so sad, so hopeless. My mom is still alive if and alive is the extent of her life. She was a geriatric nurse in her day, she begged me please don't ever put me in a nursing home. I promise Mom I won't. After caring for her along the path of the disease for 9 years, leaving my husband, son and home to live in her home for 6 nights a week for a year, then deciding to move her to a nh well It was a promise I did not keep and I am ashamed of that but we must believe we do the best we can. I got much out of this article because the author described to a t feelings of loved one standing by helpless. It's good to know others share those thoughts and feelings. Beautiful piece thank you so much tania richard

    • Karen, I am a nurse with early onset dementia. My daughter is also a nurse. She has promised to help me stay at home as long as possible, but I hope she will place me someplace comfortable so that she is not caring for me 24 hrs a day when the time comes. This horrible disease is scary for us, and we try to keep an open dialogue as to what care is going to be needed and how and when, but it is not an exact science. I think your mom would prefer to be placed, especially since she was a geriatric nurse. Don't feel guilty. Just love her and accept that she loves you even when she cannot say so.

  17. This was a beautiful story and hit home for me in a way that others have not with the last two sentences I had never thought of before – that it splits a person into two and grieving twice – sooooo very true – I just lost my mom in January of this year to Alzheimer's and the guilt involved and the pain of her not knowing who I was in the end are horrible – thank you Tania for posting your story 🙂

  18. All irreversible dementias are devastating. Every case is different within that dementia classification. Every family has their own story. Each person within those families grieve differently. As a caregiver, consultant and writer/researcher in the dementia field, I have found that persons who work together io participate in the long goodbyes and accept each member without judging each other for mistakes are able to let go with each stage. I am also a family survivor (Alzheimer's) and I know that family dynamics can be very heavy. Some of my families are financially able to keep mom at home with in home staffing, others live with mom or vice versa and trade off duties with intermittent help, others are able to place mom in a dementia home and others have to let Medicare and Social Security take care of mom crammed into an overworked nursing staff with no or little dementia training. The pain for all families is all different and can consume relationships. One families pain does not trump another families anguish. It should be a time for all people, regardless of status, to come together to fight these dementia diseases. Take time to learn about taking care of your own health and brain. Learn how to take care of each other. Contribute to research to organizations like Alzheimer's Foundation and Lewy Body Assoc.

  19. I totally agree with you- my mom was diagnosed with dementia in 1999 and died of alzheiemers last month on 7-25-14. She has not been "my mom" for 10 years. Losing her twice is so difficult- I send you a hug and want you to know you arent alone.

  20. 1 year with alz sounds like a vacation to me.

  21. Tania,

    I just read about you and your mom and you touched my heart! My mom has been my only fan for my whole life (my husband not so much), so I totally understand your relationship with your mom. My mom has Alzheimers and I help along with two siblings care take her. My Father is diabetic and we take care of them both. My mom is my best friend now and has always been. I pulled up your e-mail tonight because I feel alone and typed in loving my mom with alzheimers. I tucked her in tonight and as you know they sometimes act normal. She was holding my hand telling me how thankful she has always been to have me in her life and how we have always been so close. I have been crying my eyes out since, she is here and I miss her so and the thought of her passing as I know that will eventually come is unberable to think of. I slowly watch her go everyday and I realize that is the painful truth of this disease. Thank you for the article I am sure your mom is looking down and is so very proud of you Tania. Sort of ironic, years ago I used to call my mom Tonya, a nickname, and you Tania, with your love for your mom understands how special moms can be.
    Thank you.

  22. I have read everyone's posts and I can relate to almost all of them in some way. My mom was diagnosed with Alzheimer's 7 yrs ago, went to the hospital 5 weeks ago today and passed away 3 weeks ago today. I was at the hospital at night with her and my sister in the day they told us it was the last stage of the disease and they didn't expect her to make it much longer. Like many people said I feel like I lost part of my mom 4 yrs ago when she stopped being able to hold on a conversation with me she was my best friend we always talked about everything and then 2 and a half yrs ago when she didn't have any idea who I was that really hurt and then again when she passed away. I knew this day was coming but when I got that call from my sister around 1:10 PM Sunday the 31st that my mom was gone I still felt like this is not happening, I drove to the hospital held her hand and kissed her head one last time. I was completely numb it did not hit me until I got in my car in the parking garage and thought I won't be back here tonight…. or ever again to be by her side and I lost it. Her pain and suffering is gone and I know she is in a better place but I miss her so much I just want to hold her hand again and hug her and I don't know I just want my mom! You know years ago when she didn't know who I was anymore I thought that was the worst, that she was already gone in my eyes but I realized even though she didn't remember me and her mind was slipping away her spirit was here. My mother was a wonderful mother, independent, strong, beautiful, funny, and the best friend I ever had and that's the way I want to remember her. This disease takes so much from the person and their family there is a lot of grieving. It was nice to see this site it made me cry and smile and be able to talk and I really appreciate it thank you!

  23. ! My mama 87 was a strong ,active , proud woman always dress nice ,nail's
    To see 4 ys ago .Alzheimer's / quickly progressed into Dementia took her from me, broke my heart some day's she wouldn't even know me .other's days just for a min if lucky longer call out my name those were bless days ..To see her piece by piece being taking from her and I couldn't stop it .killed me .One of the thing she made me promise no matter what I would never place her in a nursing home with being the only one taking care of her, I'm a shame ,& have so much guilt I broke my one promise to her ….How do I forgive myself ?though I was always there I live in guilt , I was there when she pass away I think she waited for me she went 7mins after I got to her .
    Jun 25, 6 :18 p.m R.N.P

    • You shouldn't feel ashamed. I'm reading this a year after you wrote it. No matter how much you love your parent, it can be too much. My mom had live in care – a luxury – especially for someone who was just a school teacher and counselor in her life. I felt guilty all the time for not spending more time with her. The reality is that, hopefully, the nursing home she was in, took good care of her. It's a hard job and the people that do it aren't well paid. They do it because they're caring people. My mother always said, "don't feel bad for her, she's had a great life" and she also had placed her mother-in-law in a group home and always said that "I'll be okay there, it's nice, don't you worry about me". I think they find that the less distractions, the steadier the routine, the more content they are. They can't handle the stimulation that we would be causing to care for them in our homes. I hope I'm right.

  24. Thanks Tania for sharing your life with your mother. My mom was diagnosed in 2014 and everthing you mentioned in your story is happening to my mom now except her husband of nine years is neglecting her. We have reported him to the APS & waiting for there evaluation. My mom told me she wanted me to take care of her if she ever got down sick. Her husband has poa & is using that to his advantage instead of her advantage. Mom did say he has always been about money and he is spending her money and saving his. We've had to hire an attorney to try to get guardianship it's not easy to sit back and wait to see what happens but praying that it all works out for my moms sake.

  25. I simply desired to thank you so much once more. I am not sure the things I would have followed without the type of advice documented by you over my theme. It became a very distressing problem in my opinion, nevertheless viewing the expert form you resolved it forced me to leap over fulfillment. Now i am happy for this assistance and then hope that you recognize what an amazing job you happen to be doing educating most people thru your web page. Most probably you’ve never met all of us.

  26. She was the only one whom I could talk to; who understood. I can't stop crying because she doesn't even know who I am. I miss my mom too. I miss her so very much 🙁

  27. Just taken the time to read through your first post and all the comments and wanted to reply to those who think you’re not real. My view – doesn’t matter whether “Jack” is a real or fictitious character, the experience is real and those of us who don’t have to live in the way you do need to understand the experience. Things are so precarious at the moment, even for people who live quite comfortable lives. We’re none of us guaranteed our comfortable status quo and for many of us it is comfortable, oh we may grizzle about not being able to afford things; eating out, holidays, an anywhere-near-new car, home improvements, new clothes, but we really are very comfortable, those of us who get to the end of the month within nothing left in the bank but in the expectation of another salary cheque.My only criticism – and it’s a criticism of the society which created this blog rather than the blog itself – those who are in Jack’s position or have some insight that it wouldn’t take too many bad decisions or quirks of fate to land us in Jack’s position are more likely to be moved by this than people who have no concept of being hard up because they’re insulated from it by privilege and wealth – their own of the wealth of the previous generation.

  28. Thank you so much for this. As a fellow performer, this hit home for me…so entirely relatable. My mother passed away from dementia a month ago. She was living in an assisted living center – the very same where I also work every day – a blessing and a hardship of having "no break" from the day to day reality of it. Two months ago I performed in a production that she was not able to see – I can't imagine that, in an earlier time, there would have been anything that could have kept her away. The last time she saw me perform was last July, and I wasn't entirely sure that my "previous biggest fan" even understood what I was doing up there. I've wondered why I haven't felt the normal process of grieving in the last month…realizing now that I had already started the grief process a few years ago. Thank you for an article that has really hit the heart of where I am right now…

    • Thank you for your comment, Kristen. We look forward to the day when no one loses a mother to this disease. Our thoughts are with you.

  29. I found this because I was wondering why I can't let go of my mother. Not the alzheimer's inflicted person, who I also loved nonetheless, but the woman she was 5 yrs or so earlier. I miss her every day. I find myself wanted to pick up the phone to call her, but realizing that she isn't there any more and wasn't really "there" for many years. It breaks my heart. I feel lonely for her. Wish I would have had children!

    • I came across this because I too am struggling with the grieving of my mothers death. I cant seem to grieve the loss of my “normal” mother, and I struggle to remember her before she didnt know what was going on. My guess is a lot of us in this situation have to deal with similar issues. I envy those who truly have grieved twice. I want to remember the mom who raised me and was such an encouragement to me my whole life.

      My dad died of “old age” but his mind was still sharp at the end. Mom was already suffering from dementia at that time so I had to handle things when he passed. Luckily she had great care at the nursing home but there was still plenty for me to do to manage her living. I saw her every day but of course she wasnt “mom” anymore. I agree at heart she was the same sweet and loving person, the nurse’s favorite as they told me many times.

      I’m just stuck now.

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