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.

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  24 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.

  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.

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