Brand building through storytelling

My Mother – Amelia

Amelia SarahGrowing up, I always thought my mother Amelia was “different”.

Throughout my life, my mother always seemed moody, in and out of depression with a bit of a predisposition to narcissism, self-centredness and much exaggeration. She was prone to temper tantrums and in general was hard to live with. But she could be warm and loving — and always insisted upon how much she loved me — though her mood-swings and emotional behaviour were definitely more predominant.

My mother could be extremely wise and witty (she still is!), however always quite insecure about her lack of education and life experience. Bitterness and depression seemed to be her anchor. Her marriage to my father seemed to be a constant source of frustration and regret, despite their love for each other. Our relationship waned and finally fizzled as I grew into adulthood and middle-age. Now my mother and I are enjoying each others? company, though mom doesn’t really remember much from moment to moment. The irony of life.

When my father died several years ago my mother was understandably falling apart, but what I couldn’t figure out was why she seemed so relieved that he had died. By this time, I had painted a picture of her as this vicious, mentally ill woman…this crazy woman! I even wondered if maybe she had contributed to dad’s demise.

What kind of woman was this? What kind of daughter was I to be thinking such thoughts?

After a prolonged hospital stay for her in a psychiatric ward I was told that my mother suffered from dementia. A couple of brain scans later, we now know that she suffers from Alzheimer’s Disease. I really do believe to some degree that her dementia/Alzheimer’s was somehow always lurking in her brain, perhaps already influencing her behaviour many decades ago.

Strangely enough, as the disease progresses — mom is now in a nursing home — my mother has become generally more pleasant, even-tempered and positive. She smiles most of the time, loves going to observe the staff meetings and charms the heck out of most of the staff much of the time. She also has down days where she gripes at her roommate whom she doesn’t care for — even allegedly swears at her, which doesn’t at all surprise me, but all in all many of her days are good ones. She sometimes has fellow residents helping her search for her long-gone dogs and cats. She occasionally is very aware of all that she has lost ? her freedom, her home, her husband, her beloved pets,  those times are indeed hard to observe her going through.

But all of the little things that used to upset her she no longer notices. I don’t have to worry about her obsessing about negative news events — she no longer watches the news or reads newspapers. She says the funniest things and we’re always laughing with her, not at her. She’s extremely possessive of her purse and bras (yes bras) and sleeps with both of them, the bra still on; the purse nearby. A nurse wanted me to break mom of her purse habit, to which I replied no way. The purse stays. Let her keep something familiar.

I don’t make excuses for my mother’s past behaviour, nor do I pine for another crack at a childhood with a June Cleaver sort of mother. What was simply remains in the past. In some strange way, the Alzheimer’s seems to have made her a more content person — probably a result of a combination of good drug therapy, a safe, controlled environment and her ever-changing brain. Things could and probably will get worse but I work hard to live day by day when it comes to mom. To stay positive and to model positive behaviour in her presence. I used to consume so much energy fighting every word that she said, protesting her every thought, frustrating her further. Now I just simply enjoy the present with her.

Posted by Sarah



Previously posted comments:

Comment
Rona Maynard
October 05, 2007 at 4:04AM

I come from a family that’s riddled with dementia, so I can think of few subjects more depressing than dementia. Sarah, thank you for highlighting the unexpected benefits that can accompany this devastating diagnosis (at least in the early stages). I’m touched by the image of your mother sleeping with her cherished purse. And you’ve championed this odd but comforting habit. Good for you.

Comment
Ginny
October 30, 2007 at 9:09AM

Sarah, I had a spooky feeling when I saw the photo of your mother and began reading your story about how difficult she was in years past. I related to your story as my mother has been mentally ill for all of her life that I can remember. My mother loved cats. Now my mother may have dementia but we are estranged. With my mother it was hard for me to know if her difficult behavior towards me that returned after a hiatus of several years was due to the lifelong mental illness or a dementia. With my mother I can’t tell if it is one or the other.

I am glad tthat your mom is now more even tempered, positive, and pleasant than she had been although it is terrible that the reason for an “improvement” is Alzheimer’s. I had hoped that in my mother’s last years that we would remain on better terms. I am sad that things aren’t turning out that way.

In the situation with your mother, the Alzheimer’s seems to have two sides. It is a terrible illness. Yet it seems to have made it possible for you and your mother to have a much better relationship in her last years. I feel odd saying that. There is so little that is good about Alzheimer’s.

In any event I am glad that you both have this more pleasant time together at long last.

Comment
Sarah
October 30, 2007 at 11:11AM

Ginny — your comments really struck me.

“With my mother it was hard for me to know if her difficult behavior towards me that returned after a hiatus of several years was due to the lifelong mental illness or a dementia. With my mother I can’t tell if it is one or the other.”

Wow to the above! I have gone through the above feelings over and over during past almost three decades of my adult life.

I have to say that I think overall, we are what we are. In that I mean that there are some not very nice people out there and our mothers — for whatever reasons — are/were not very nice people. I do blame untreated mental illness and perhaps even developmental delays for my mother’s personality. But regardless, it’s hard to admit that to oneself — that one or more parents, siblings, etc. just aren’t the nicest people in the world.

In my mother’s case, I do believe this “nice” phase is do to the combination of medications that she is on as well as some of the “fog” that she is in due to the Alzheimer’s. On her more lucid days, she can be extremely nasty verbally. The more confused she is, the prettier I become, lol.

Thank you for your kind comments. While it is sad to not enjoy the last years with ones parents, try and live for the now and love yourself for who you have become. Easier said than done I know, but it sounds as though you have given it your best shot.

Comment
Ginny
November 02, 2007 at 2:02PM

Thank you, Sarah. The hardest person to love sometimes is myself. It’s something I need to practice more! 🙂

Comment
Betty
January 28, 2008 at 3:03PM

it was very nice to read your back and forths ginny and sarah. As i write this i am fearing my mother may read it i highly doubt it though. I am young and feel as though i have lost my mother even though she is still here i too have experianced all of the above and more. It nice to know that i shouldn’t feel guilty that my mother is not a very nice person.

Reply
Rona Maynard
January 28, 2008 at 4:04 PM

Betty, my heart goes out to you. It’s natural for a daughter to long for her mother’s love and approval, and to wish she could make her mother happy, or at least not compound her mother’s misery. But your mother’s troubles are not your fault and almost certainly took root long before you came along. We still live in a culture where women can’t explore the full range of their potential, and your mother’s generation had it tougher than yours. Still, how she deals with that is her responsibility, not yours.

Comment
Sarah
February 07, 2008 at 10:10AM

I’ve encountered a lot of people who to some degree or another, seem to live in fear of their parents. People who are mature, professional, etc. yet those somewhat unhealthy bonds of childhood linger. I know a couple who had wonderful plans to build a pool in their yard for their children to enjoy — yet they stalled and stalled and finally the plan got cancelled because they were afraid of getting too much flack from a parent (the “patriarch”) who expected all grown children to come together each summer at the family cottage — which they always made excuses to not go to. I have yet another friend who is almost 50 and who is still afraid of making his mother angry by this or that.
We cannot be responsible for anyone’s feelings or actions (unless of course we set out to intentionally hurt or antagonize someone). Particularly if we are mature and independent adults.
I suspect that perhaps a lot of adult children also fear being cut out of wills, etc.

Reply
Rona Maynard
February 07, 2008 at 2:02 PM

I’ve noticed the same thing, Sarah. Well said! The greatest gift any parent can bestow is the freedom to be oneself, without any pressure to gratify someone else. Sometimes as I go about my business, riding the subway or filling a grocery cart, I’m quietly awestruck by the offhand tenderness that so many parents show to kids who are being their cranky, rambunctious, not-always-adorable selves. These parents may be weighed down by shopping bags and briefcases; they may have circles under their eyes and ketchup stains on their jeans. And no doubt there are plenty of times when they snap under the strain of keeping it all together, the job and the family dinner and the leaky roof or whatever little emergency tops the domestic to-do list. Perhaps that’s why I want to cheer for them. And inwardly, I do. All parents do the best they can. For some (mine included), the best came freighted with need and expectation. What they couldn’t give, I’ve learned to find from other sources. I’ve stopped asking, “How old is grown up?” To live well is to keep on growing, and to face the lonely, discomfiting reality that there will be countless times when nobody is cheering for you and you kind of wish that somebody would.

Comment
Sarah
January 27, 2012 at 2:02PM

Update! Wow, I cannot believe I wrote this about my mother in 2007! It seems like yesterday (or maybe a year ago).
My mom is one tough cookie. She is now wheelchair-bound and her verbal skills have almost all slipped away.
She no longer asks for her cats; her beloved purse and lipstick have also been forgotten for quite some time.
Mom’s eyes light up when she sees me — something deep within her knows I am somehow connected. The concept that she is a mother — my mother — completely escapes her, however. As does my name. That’s okay. She thinks my partner is my dad — of that we are sure. She grabs his hand and says “you’ve…. come….for me!” in her broken sentences…
Mom no longer worries about presentation, lol. She decided her teeth were no longer necessary and somehow they too disappeared at around the same time she forgot about her lipstick and purse.
She recently won the battle with a stomach flu that infiltrated her nursing home….other than that, no major illnesses. Roommates are no longer a bother to her — she seems neither happy nor unhappy. Just waiting…
Somehow I hope she passes quietly in her sleep when her time does come.
I’ve recently re-read “Still Alice” by Lisa Genova. What an amazing book. It helped me better able to walk a mile in my mom’s shoes.
Mom still says “when am I going home”.

Reply
Rona Maynard
January 28, 2012 at 8:08 AM

I’m glad to see you back, Sarah. You were one of the first to post a story here, and I remember it well. What stands out in this sad new chapter of your mother’s story is the ability you’ve shown to enter her diminished world. I don’t wonder that Lisa Genova’s terrific novel helped you unlock the gates. I too have read it twice and regularly urge it on anyone who’ll listen.

Comment
sarah
January 28, 2012 at 6:06AM

i posted a follow-up last night but it isn’t here. 🙂

Reply
Rona Maynard
January 28, 2012 at 8:08 AM

Please bear with me, Sarah (and anyone else who’s been wondering where her comment is). I have to vet each comment personally–otherwise this site would be inundated with spam. Sometimes I fall behind. Apologies to all perplexed visitors.

Comment
Sarah
January 28, 2012 at 8:08AM

Thanks Rona.
I always appreciate your incredible insight and feedback.
You know — the toughest part of all of this for me — and this will sound selfish — is that save for my partner, my children and one or two work-mates, people never ask me how my mom is doing. People I’ve known for years and who know what she is going through.
We are all so wrapped up on our own lives.
There are many sad stories at my mom’s nursing home. Many of the residents never have a single visitor.
I urge those women here who are feeling the pain of missing their parents to visit a nursing home nearby. You will make someone’s day. 🙂

Reply
Rona Maynard
January 28, 2012 at 8:08 AM

Your comment got me thinking, Sarah. I am one of those people who do not ask of a parent with dementia, “How is she doing?” It’s not simply that I’m wrapped up in my own life, although that’s part of the reason. The more significant part is that I figure the answer to the unasked question can’t be anything but terribly sad. As the granddaughter of a big-hearted man who never in my lifetime knew who I was, and whose decline was excruciating to witness, I’m a little afraid of the answer to “How is she doing?” It occurs to me now that perhaps not knowing who your family members are makes it possible to find delight in a visit from a stranger. Thanks for the suggestion.

Comment
Sarah
January 28, 2012 at 2:02PM

I think you are right, Rona. People are probably just afraid to ask. I don’t talk about it much either. People don’t want to ask uncomfortable questions or risk uncomfortable answers, I suppose. But it always makes me feel very grateful when someone does pose the question to me.

I have a long-time friend/neighbour who never, ever asks me about my mother. Yet she talks constantly about her own aging parents and her dying father (both parents of very sound mind even though they are approaching 90).

Is dementia/Alzheimer’s more taboo? Or am I just paranoid. Lost another mentally ill family member to a horrible suicide a couple of years ago; that same friend always implies the tragedy is shameful rather than what it is — tragic. I still think people in general have become more self-centered and less senstivite/empathetic.

Regardless, it’s been a long and bumpy road and I’m tired of watching my poor mother very slowly waste away. I put up a strong/brave front, but I still dissolve into tears most times that I see her now.

Reply
Rona Maynard
January 29, 2012 at 5:05 AM

Sarah, your comment brings back childhood memories of watching my mother’s escalating grief as her adored father sank ever deeper into the swamp of Alzheimer’s. Like you, she put up a brave front. It’s a hard, slow passage. I’m so sorry.

Comment
Sarah
January 30, 2012 at 8:08AM

It is what it is.
My brain and my pragmatic side regularly struggles with the grieving part.
Am I grieving her slow death or am I somewhat selfishly grieving the loss of a mother that never was.
The key for me is to try and keep it all in perspective. One day at a time. Forums such as this one are very helpful to me.

Reply
Rona Maynard
January 31, 2012 at 4:04 PM

Sarah, women like you were and are the inspiration for this site. As for your question: it’s both. Almost everyone mourns the loss of a parent, and a slow erasure just might be the hardest kind of loss. For those whose parents withheld approval or love, there’s the added sorrow of knowing that what you wish you had will never be. Your mind knew that; your heart kept longing and death forces you to bury that longing. I came to understand this when my alcoholic father died.

Comment
Sarah
February 06, 2012 at 12:12PM

Yes, you are absolutely correct.
She was the mother that she was. She did the best with what skills she had.
I am worn down by this experience of slow erasure, that’s for sure. I put on a brave face and always talk the “my cup is half full” talk, but I am very worn down.
I am not alone. Many of my peers are in pretty much the same boat — caring in some shape or fashion for their aging and/or dying parents. Raising teens at the same time. That’s been the hardest part for me — that “sandwich” effect. And I’m not even taking care of my mother! How do people do it whose parents are not in full-care facilities?
Five years ago my children saw me as an always smiling, make the best of the situation single mom who loved to teach her kids how to drive, etc. Now I am just a sometimes very nervous/stressed 40-something with high blood pressure with not nearly as much patience as a few years ago….
Can’t wait for spring :0)

Reply
Rona Maynard
February 06, 2012 at 4:04 PM

You’re doing your very best in a situation that would tax anyone. That’s all you can do. My advice: schedule little breaks into your life as often as you can–yoga class, massage, a walk on a bright day, coffee with a friend. Take care of yourself, Sarah. That’s the only way you can ensure that you’ll be able to take care of others.

Leave a Reply

Stay up-to-date with Rona.

To see what’s on my mind these days, friend me on Facebook.

Miss my old site?

Visit the archive to find your favorite blog posts and Chatelaine editorials or browse my published articles. Sorry, I’m not blogging anymore.