AN ALZHEIMER’S CAREGIVER DAY FROM HELL
Pt. 7 CAREGIVER SERIES
“HOW WE GOT HERE”
This part, actually parts 7-10, has been my nemesis since I started part one months ago. It is about one of the most painful few days in my life. It was also the day I decided to change all of our lives. Some stuck, some I’m sad to say didn’t, but here it is:
January 10, 2014. Just a date on a calendar, nothing special really. Two days after I had gotten out of the hospital, after spending 5 lovely days laid up being waited on hand and foot. Yes, hospital stays are generally thought of as a nightmare…not this one. You see, my nightmare was at home. I didn’t want to leave this 10 x 20 room. It was safe here. Here people took care of me, made my decisions for me, brought me my food (oops that was my hubby coming back from McD’s) 10 days of no food will make you pretty hungry. I DID NOT WANT TO GO HOME FROM THE HOSPITAL!!!!
I know that sounds crazy, but I was going home to crazy and I just didn’t want to go. Alas, hospitals are not the Hilton and check out is not optional (especially NOT at $2000 a night). I arrived back at the asylum late on January 8th. They came and set up the machine that would help me to breath and I laid in bed that day and the next, unable to talk…still.
On January 10th I decided to get up, get dressed and go out into the world if only to the CVS drive thru and a follow up Doctor’s appointment. I hadn’t been in public for days,14 to be exact. We woke up early and told mom to get ready to go. She had been alone much of the last 5 days so she was not a happy camper, although she was trying her best.
We got into the car, after locking the doors and sat there. Where are the keys? We hadn’t seen them since I handed them to my brother at the hospital (of course, we didn’t think of this until after we locked the door). It was 3 degrees that day even in sunny SC, damn polar vortex! I looked at mom and asked where the house keys were, she didn’t have a clue. I called my brother, “I gave them to mom when I dropped her off”. What? No please tell me you didn’t… he did.
I called the owner of the house we rent and he graciously offered to come and unlock our doors, he was about an hour away and thankfully we had the car keys. We went on with our errands while I silently fumed in the front seat. We got back home and the doors were unlocked. We went searching for the keys that mom didn’t have and somehow, someway she had managed to lock them in her safe. A safe that as far as I know has no valuables in it, some checks and receipts for bills that she paid 15 years ago. That’s just my mom. “Oh, I remember now I was afraid someone would break in…so you locked the house keys in the safe? Only in Alzheimer’s World does this make sense (as Bob DeMarco puts it, although at this point I had yet to meet him).
We made it through the Doctor’s appointment, picked up the prescriptions and had the doors unlocked. It was going to be okay as long as I would NOT TALK! Easy for them to say.
I decided that I felt up to a little grocery shopping , the food pantry was getting very low Mom was down to only one box of poptarts and 12 cans of Chicken and Wild Rice soup. So off we went, at around 3 in the afternoon, to Walmart to get food. I would ask mom what would you like “Nothing”. She was following me through the store like a heat seeking missile. Right on my ankles, again I calmed myself down. I was getting tired and I just wanted it over with. Do you need coffee “Nothing”. I just started throwing stuff in the cart that I knew she would eat and called it a day before I collapsed in the middle of the checkout aisle. Okay, I get it she was angry but why, I had no idea.
We went home and I offered to cook. Mom what do you want? “Nothing”. Okay at this point, I lost it! I asked her what was wrong with her. She looked me dead in the eye and said “I hate your house. I hate being here with you and damn it I am going home!” What? I have never been screamed at by my mother, she gave us guilt trips not screaming binges, that was me not her. I had never been talked to like that from her and I will blame it on the shock, but I looked at her and said “You can’t go home, you can’t even take care of yourself for one day without causing a catastrophe”. I cringe at that memory even now.
She went running to her room, I sat at the kitchen table crying and shaking myself. When I looked up my husband was stepping out the back door with tears in his eyes. We were all miserable and going crazy.
About 15 minutes later she came back to the kitchen with red puffy eyes, snot running down her nose. In the smallest voice I have ever heard, she said “I’m scared”. Anger…vanished, gone what could I say. I looked at this woman who has gone through so much with me and said to her “Momma, I am scared too! But the one thing I do know is that the only way we can get through this is to do it together.”
Later I learned that the stress from being alone those 5 days, even though someone was with her most of the time, it wasn’t me and I am who she had come to depend on. She thought I had abandoned her although she knew how sick I was, she doesn’t understand it.
Another big mistake I made was the late afternoon grocery trip, yes I felt up to it, but did she? I didn’t even think to take that into account. She had been through quite an ordeal herself. She was left alone to much, the pipes had frozen (again damned polar vortex) and she couldn’t even talk to me on the phone. While Pat took care of everything he isn’t me and that’s what she needed most. I was only trying to get things back on track. It was a combination of bad timing, confusion, frustration and just being scared to death.
After that I fixed her a bowl of her favorite soup and a grilled cheese (she eats like a 12 year old these days) we somehow ended up watching UFC girls fighting and laughing about it. I had a reputation when I was younger because I liked to fight…mostly boys, but that’s a different story. We talked about old times and had a wonderful evening.
January 10, 2014…My 44th Birthday
Remember to:
Appreciate the good, laugh at the crazy and deal with the rest!
I love you, momma!
Oh man – you are going through such struggles. Thanks for sharing your story.
Thank you Robin, it is an ever changing situation but something that I feel I owe to my mother.
We didn’t have to deal with alzheimers with my Mom or Dad thank goodness. You are a saint for being able to handle what you went through. It is never easy taking care of a parent when they get older… when you throw alzheimers into it… that is a whole new ballgame.
I am definitely not a saint Terry but thank you. I am just doing what must be done. I love my mom and want the best care for her.
Your chronicles are so raw and honest. I think you should put them into a book!
Thank you Liz, maybe someday. Right now I am working on another project…when I have the time.
Thank you for sharing this glimpse into your life. I have been an Alzheimers caregiver, and I know it is extremely hard, and difficult! Stay strong
Thanks Amy!
You go through so much I can not even begin to imagine how hard that must be,Thank you for sharing this.
Thank you Kay I want to stress it is very hard but there are also some good times to still be had.
“I’m scared.” Yes, I get this. I remember it. That’s what got me in this post.
Yes, Carol it was very emotional for all of us. I never heard her say that…ever. She has always been such a strong, independent woman!
Dealing with Alzheimer’s as a caregiver is incredibly challenging. I remember when I was in nursing school, the first day of clinicals a patient with Alzheimer’s called me a “dirty girl” and other not so nice things. I was so taken aback by it. I learned quickly that they don’t mean it. It’s hard when someone you love is being cruel to you, but you have to just keep reminding yourself that it’s not them. Still hard though. I’m sorry you had a rough time.
Yes, that is a challenge. She has made some embarrassing statements before but I am considering having cards made to pass out to people who might not otherwise understand that she doesn’t mean it.
It must have been so hard on both of you. What you are dealing with is such a huge learning experience and it is nice that you are sharing it. Others will find your blog and know they are not alone in this type of struggle.
That is my one hope Jennifer. I remember that feeling of being all alone and I don’t wish it on anyone.
I can’t even imagine what you felt like when she said “I’m scared.” How sad, and I’m sure so many people can relate to your struggles. Thanks so much for sharing.
Thank you Lois! It was heartbreaking that is for sure.
Such a well written story, it just pulled at my heart. I could tell you a million things like, don’t be so hard on yourself, you were just getting out of the hospital and forgot sundowners effect, your coping skills were compromised by your own illness, etc but of course you know all this and beautifully shared!
Thank you so much Haralee! Yes you’re so right my brain knows all of this stuff it’s getting my heart to follow along that is sometimes the hardest part.
I love how honest you are in your posts. I hope to never have to go through this.
I hope you don’t either Amanda, thank you!
Prayers to you. You have one of the hardest jobs in the world. This should go into a book. I would buy it. God bless you.
Thank you Connie it is something I am definitely thinking about. I have been working on another project when I find the time I hope to have it done by next summer then maybe…
Alzheimer is never something easy to go through.
That’s for sure, thanks for reading!
Oh my goodness, what a day! And all that happened in just ONE day, that’s something else! I’m glad you’re able to see that the anger isn’t really your mom, though!
Yes, we learn more every single day and although the disease gets worse we have made progress in the caregiving. The more I learn the easier it is for the both of us.
Oh this is a bit far too familiar to me. My Mom has Alzheimer’s as well. As did my Grandma and Grandpa (her parents). I feel the pain and frustration and know the same fear.
Oh Amber I am so sorry! It is a dreadful disease for anybody to go through! Hope you will check out some of my other posts and you can always email me although I am by no means and expert just someone learning to do the best job possible under the circumstances.
Wow you have i tough but I remember going through this with my grandma so I send much love and support. hugs
Thanks Becca! Hugs and support always welcome!
Alzheimer’s is difficult. I just lost my great grandmother to the disease in March. She tried so hard to be independent but in the end, I believe her inability to care for herself (and her stubbornness) ended up getting the best of her.
I am so sorry for your loss Nicole! My prayers are with you and your family.
My grandfather, who passed away last year, had serious dementia. He would freak out that an “scary old lady was in the window”- it was his reflection in the mirror. Such a horrible disease.
Yes, there are some very peculiar behaviors that come along with it. My mom always thinks she is smothering. It just can’t be explained.
Even though I’m sure you don’t feel like it some days, you are doing such an amazing thing for your mother. I’m sorry that you are going through this, but stay strong! Thoughts and blessings to you.
Lana thanks for your support as always!!!! Glad your back from your vacation and hope you had a great time!
Alzheimer’s is such a horrible disease anyways. So difficult to see someone suffer.
I totally agree Amber!
Sounds like you’re having a rough time right now and I can’t say it will get better because I don’t know that, but I am saying a prayer for you.
This was in fact written about several months ago and even though there are hard times this was the hardest and things have gotten alot better…most of the time.
Can you feel something that is squeezing you as you read these words? That is my long distance hug. A very big bear hug.
I live every day with health struggles, but to hear your mother tell you she is scared? That must be indescribable. Oh my goodness.
Thank you for sharing what must have been a difficult story for you to write.
Thanks Cathy! I know how much you struggle and being someone who has RA I understand what you go through. You are one tough lady who I greatly admire!
You are an example of how to handle struggles with grace.
Thank you Elayna for such kind words!
Must be really tough on you. I’m thankful that you get moments that you can enjoy. Gives you some memories to escape to when it really gets too tough!
So right Marielle! There are good and bad times in everyone’s life and remembering the good things can definitely help get you through the bad!
The hard days are hard, but that just makes the good days that much better. Thank you again for all you do!
So true Annie!
Your posts are so honest it really helps relate to you!!
Thank you so much Roshni!
Oh wow….I can’t imagine what you are going through. You really should compile these into a book. I’m sure your experience would be helpful to many people dealing with similar situations.
I have had that suggestion alot lately and I appreciate it very much…maybe someday soon.
Things have gotten better Susan and it is because of the support that I get from friends like you that always let me know that I am not alone. You don’t understand how much that means to me!
Thank you for sharing. I hope your journey gets easier.
Thank you Krystal!
I agree with another reader – this belongs in a book. It’s so honest and well-written. God bless you!
Thanks Kristen! I am working on something right at the moment that I hope everyone will like (fiction) but I am seriously giving it some thought!
Thanks for sharing your journey. You are such an inspiration to those that are struggling on their journey.
Thank you so much for your kind words Ann!
That’s scary. It’s awesome you do what you do. Takes an extreme amount of patience and courage.
Some days are really good others not so much! I am very blessed to have a supportive family.
I love reading your blog. I feel like I’m right there with you.
I think having a blog is a great way for you to share the struggles that caregivers go through. It’s not an easy role to have.
It is and it saves me a fortune in therapy.
This has to be hard. I will pray for patience and strength for you. All the best!
Thanks Veronica all prays welcome and appreciated!
I sometimes get very frustrated when taking care of my mom when she’s sick and she doesn’t even have alzheimers. I can’t imagine how much you go thru but I do know that even at the most frustrated point, it doesn’t change how much we love our mothers. You’re a great daughter!
That is so true Mina. I know someday she won’t be here and I will long for that aggravation and frustration. Good luck to you as well. You must be a great daughter also!
I am so sorry you going through this. I admire your honesty and though you might not see it I see your strength. I think you need to see if you can get respite care, I think that is the name so you can relax. I wonder if you have adult day care centers where you live. Also I took a nursing class and they said alzheimers is often food related and we should limit our intake of sweets. I noticed you said your moms pop tarts are getting low. I would give her more fruits and veggies and NO OJ. I don’t know they said this in class. Then again I have never had to be in this situation and it seems like you have a lot going on. I wish I could just give you a hug and let you know everything was manageable and how I admire you so!!!
I have been thinking about the adult day care a couple of days a week but mostly to give her more interaction with people her age. She gets lonely around here sometimes.
Thank you for reading Tess, I post at least every Monday sometimes more. Sign up for my blog posts it makes it alot easier.
The theme that seems to go through all of your stories is that neither you nor your mom have all the answers. But together, through love, it’s clear that you’ll get through each day and each struggle as it comes.
I guess Karen that sums it up better than anything else!
What a wonderfully honest account of caring for your mother. I always had to struggle to be patient with my mother; I absolutely adore the woman but boy did she push my buttons. One of those areas of my life where I wish for a do-over. Thank you for sharing!
Believe me Tracy she can and loves to push those buttons also! Mom has always been a smartass and she definitely has not lost that ability at all!
I’m so sorry you’re having such struggles. My mom has been diagnosed with Dementia and I dread what the future holds for her.