Who knew what was coming?
I didn’t. I assumed that lots of the stuff my mother shared was simply because that’s how she was. She didn’t ever talk about menopause so I assumed women of my family didn’t have any problem with the change of life. (Boy was I wrong.)
At some point, things changed a lot in my life. My eyesight started to decline. The convergence of a late in life separation, unemployment and buying a house overlaid with menopause sent my memory away – and I still haven’t found it all.
I’m learning coping strategies and alternate cues and yes I’m doing fine. And no one thinks I look my age, which is always a good thing.
My mother is eighty-two. She is two years post a diagnosis of Alzheimer’s disease. She’s been on a number of medications and while each has helped her short term memory, their side effects have diminished her quality of life enough that we’ve taken her off them. It looks as if this last prescription might be the right one. She’s calmer and less prone to anxiety attacks. And she’s not nearly as confused as she was.
At the recommendation of her doctor, she signed a Personal Directive, which is legal speak for a legal document giving someone else the right to make her decisions, if that becomes medically necessary. So whenever she has a medical issue, she calls me, because I’m her agent. The irony of this is that she and I have never been particularly close. Yes, we’ve maintained a relationship but I have felt much closer to other women my mom’s age – women who are dynamic and active. But I am her agent and I am responsible.
If you’ve read my earlier posts, you know that I’m a hero, so this isn’t difficult – one of my traits is that I can be counted on to complete whatever needs to be done.
Mom called this morning before work to say she’d fallen. I immediately asked her some questions to determine how she was and to ensure she could follow the conversation, because she’s had two strokes. Small ones, but-. Rather than going to work, I drove to her house, about thirty minutes away. She was scared and crying but we got things organized. I left a note for homecare, got her to brush her hair and her teeth (and then put them in) and borrowed a wheelchair. We went to Urgent Care and checked in.
And waited.
And waited.
One hour.
Two.
Three
Four.
They slipped an examination by a doctor in there and an x-ray. And we waited.
My mother alternately worried and waited. Anxiety clawed at her. At times she couldn’t remember more than her name and the pain in her foot. She got confused about which facility we were at. She always knew she was with me (losing recognition of her family is coming but it’s not here yet), but she couldn’t remember what had happened to her foot.
We’d forgotten about breakfast and it was well past lunch by the time we were finished.
But all is well. Probably a cracked bone in her foot. No cast. No pain meds. No follow up unless it gets really sore.
It was the longest time I’ve spent alone with Mom in a long time. I saw her frustration at not being able to remember. I saw her obliviousness to her memory status. I felt her panic – at times it was palpable. And I saw how far she’s gone down this path.
It’s not pretty. And it definitely takes a lot of courage to get up every day while the whole world knows you’re going to lose another fragment of your past. Today she knew me. But I’m not so sure about tomorrow. Or the day after.
Wow. I have never met anyone with Alzheimer’s and its scared me since I’ve known what it was. Not to be able to reign in control of your own memory or self identity goes beyond a ‘scary thought’ for me. Watching the movie “The Notebook” scares me stiff.
It is a terrifying disease, for sure. Lots of research is being done and hopefully will come in time for you and for me.
Louise–Thanks for being vulnerable here so we can pray for you and your mom. I cannot imagine this path… just cannot. I’m so sorry. I’m sending this link to another of our community that’s experiencing a similar time with her mom. Bless you.
I hope my experience can help someone else Heidi. It is so important to know we are not alone with this stuff. It’s critical.
What a beautiful, touching post, Louise. I hope writing it has brought you some comfort, and that you have more comfort swirling about you. I can’t imagine what you must be feeling right now… I’ll be keeping you and your family in my thoughts!
Thanks August. Much appreciated
((hugs)) Louise, I had to take some time before commenting. Alzheimer’s is tough, it has been over 10 yrs since my Mom was confirmed and my Dad who is her caregiver is showing signs now himself. I live the closest at 4 hrs away and with my hubby go for a long weekend there once a month. Nothing she does or says anymore is original and even the memories are getting mixed up.Dad does all the cooking, making sure she changes clothes etc but he is so very lonely. They are both in their mid 80’s but my Mom is so lost, one more time running away and she will need to go into care. It is those times when she really goes into a temper and thinks we all hate her and consider her a burden that hurts the most. Mom was there to help me recover my memory and so I have a special awareness of what it is like not to remember. This connection has helped me bring her back to herself and given her some comfort while she is struggling. But less and less we are reaching her now. One thing I did back 5 yrs ago was put a family album of past/recent pictures of family and friends. It is easier for my Mom to recognize them when she sees the older pictures with the new or in person individuals. We keep Mom working with us instead of me just cleaning the refrigerator I ask her to help. Small chores but she needs to be coached and these times give my Dad a break.
Alzheimer’s is tough but we are doing all we can loving them through the struggles.
Shirley, I can see why you waited a few days to post. How very sad for you. and I totally get your dad’s loneliness. Obviously, you are a good and loving daughter to do all this for your mom.
my mom doesn’t look at pictures anymore. She was never thrilled about having them and that shows now. She’s alone. divorced some 20 years. and then dad passed 17 years ago. so she lives alone. we have homecare in every day (in Alberta, that’s part of our medical service and doesn’t cost us) and meals on wheels, an agency that brings low cost food in to shut ins. she doesn’t go out, thank heavens. Mom is very compliant.
take care of yourself – you have a huge burden of love to carry
Thanks Louise, We would have home care come in but my father will not agree to it.:( My 3 younger sisters and I keep watch as best we can long distance. I am smiling and agreeing with you there is much to keep me busy in addition to helping my parents. Learning to pace my energy and strength is quite the balancing act:) But the Love overflows…
That sounds like an incredibly hard day for the both of you. I’m really sorry you both had to go through it. You are true hero.
It was exhausting, Kourtney. Mom went home and slept and I went to work came home and slept too.
So sorry to hear about this, Louise. My mother has a myriad of health problems, but thankfully Alzheimer’s isn’t one of them. It’s a heartbreaking disease. You are definitely a hero. Thanks for sharing with us.
I think i’m really good at doing what needs to be done, Stacy, which is typical of the hero role. Obviously i’m not completely over that business. LOL
Alzheimers. Louise, what can I say that other haven’t? Yes you’re a hero in more ways than one. I can’t imagine how hard it is to watch the decline of your dear mother’s memory knowing that soon she won’t even know you. Then the thought of how hard it is on her. The frustration, anger, fear and anxiety she must feel everyday as her mind slowly shuts down. What a nightmare. Thanks for sharing your experience with us. You’re a good daughter Louise. 🙂
It is hardest on mom. and i think a couple of my sisters are also struggling. Without the training, they’re devastated by every loss, because they don’t expect it. It’s weird, but for me, knowledge is power. take care Karen.
Oh Louise, I just want to give you a big hug. What you’re going through is never easy. Your mother is lucky to have you, all things considered. Alzheimer’s is tough. Been there. I’ll be keeping you in my prayers.
Thanks Debra. Obviously you’ve been through this process. It is so common, i’m surprised we’re not seeing more about it.
Ah Louise, you make me cry. It’s so hard to watch our loved ones decline. It requires patience and understanding and so much compassion, all of which I know you have in abundance. Your mom is very lucky to have you as her agent in this process.
you’re very kind Sheila. Thanks. it is very hard to watch anyone’s decline into this kind of loss. But the meds are getting better every year and if we can get people diagnosed early, they will be able to live long lives with a decent degree of mental health. Mom’s doctor assumes she will die of something else, long before theAlzheimer’s gets her – which is a good thing.
Just yesterday, I was doing my “Two for Tuesday” post for this coming week, and I chose Glen Campbell, who, sadly, is in the early stages of Alzheimer’s. I had no idea about your mother. My thoughts and prayers are with you both.
I heard that about Glen and yet he’s doing a final tour. Amazing courage in my mind.
Louise, sending warm thoughts your way. I lost both my parents in their 60’s, my mom was gone the day after celebrating 61.
ouch – how tragic, Jill. I’m sorry for your loss. Dad passed at 69. his parents lived into their late 80s and mid 90s, so it was kind of a shock. thanks for the warm thoughts.
Hang in there, Louise. I can’t imagine how hard it is to lose a family member that way. Thanks for sharing your story. My grandmother is in her late 80s, and the last time I spoke with her and I asked how she was doing, her response was, “Not good at all.” Then she asked me to pray for her. The tremble in her voice made me so sad. She’s on oxygen all the time now and gets confused easily, but my parents have stepped up and are caring for her. Sending positive energy your way today.
I’m sorry to hear about your grandma, Denise. old age is a trial, for sure.
Getting old is definitely not for sissies! Both of my parents went through this, as did my husband and his mom with his grandpa. DH’s grandpa was really up and down – sometimes, they’d visit and he’d seem perfectly normal; other times, he wouldn’t know them, or he’d do something like ask for his toolbox so he could repair the elevator (the nursing home he lived in was one story). My MIL would just laugh – because it was either that or cry. Hugs and thanks for sharing.
thanks for the hugs and sharing your story. alzheimer’s is everywhere. amazing to me that this is my first experience of it
Gosh Louise, how interesting it is to see these changes in our parents. For years they are just mom and dad and then we begin to notice something else. My father died of cancer before he began a descent but my mother is 78 million years old now and doing little strange things. Wonder what the next few years will bring.
Veronica, it is fascinating to watch. Because of my background, I think I understand the illness and the progression fairly well, so I’m the perfect child to deal with the medical issues, but it sometimes catches me totally off guard…like yesterday. take care
Oh, Louise! “And it definitely takes a lot of courage to get up every day while the whole world knows you’re going to lose another fragment of your past.” The hero’s journey takes on new meaning here since you must be at your mother’s side as she loses more and more of herself. Bon courage, my friend.
thanks Pat. It has most definitely been an interesting process and a challenging and painful one as well.
The waiting feels like a Twilight Zone episode, doesn’t it? My dad’s problem is the opposite of your mom’s; his brain works but his body is giving up. We’ve just agreed to have him fitted for a wheelchair. Sigh. Growing old sucks.
Joan, I’m sorry to hear about your dad. Either way is painful to watch and live. Mom gets so frustrated because she can’t remember. she’s learned some good coping skills and she’s fairly compliant, most of the time, so we’re lucky that way. the waiting and watching are hard, you’re absolutely right. prayers to your dad. He’s path is also very difficult.
You’re very brave, and thank you for sharing this with us. I can’t imagine what this must be like for you. After my grandparents’ car accident this spring, my grandpa couldn’t remember why my grandma was injured. Every time he saw her, he’d get upset all over again because he didn’t know why she was all bruised up. The break seemed to be temporary because he’s now back to normal, but even for that short amount of time, it was frightening and humbling.
Do you know if there’s any progress in the search for a cure or even an effective treatment?
How sad for your grandpa, Marcy and for all of you watching. Must have been heartbreaking. I’m so glad he’s back to himself.
there is progress being made with Alzheimer’s research and treatment. Mom’s new meds are amazing. They’ve made a significant difference in just a few weeks. But they are so strong they take 4 months to get to full dosage (4 weeks at each dose, before it increases). Testing is also progressing. There is such good work being done but it’s a complex illness.
Wow, Louise. This is so poignant and honest. I can’t imagine the angst and worry and the reflection that comes with dealing with a parent suffering from Alzheimer’s. I wanted to reach out and hug both you and your mom. I hope she has many, many more days to know you, appreciate you and love the daughter you are.
I’ll take the hug, Ginger, for both of us. It is hard to see the little losses. Sometimes it is frustrating (when she tells the same story five times in ten minutes) but mostly it’s just sad. An Alzheimer’s diagnosis would have me re-evaluating everything I believe and hold dear.