Got 300 hits on my blog since last night, thanks for that. I try to be upfront and honest, and not take my readers on a bullshit roller-coaster ride and I hope you can appreciate my honesty.
I swear there is never a dull day in my life, although there are days that I wish were filled with nothing because I need days off too. People don't seem to realize that what I do is far beyond a full time job, this is someone's life, health, and well being on the line,that someone being my mom. The scope of all this is very real.
Mom had all the nurses laughing at her doctors appointment today. I took her in for an eye infection, but ended up getting several other tests done so an hour appointment turned into a 3-hour venture and my back is killing me from standing practically the entire time because mom wouldn't sit still, or while the nurses and doctor were giving her exams, etc it was me who'd dress/undress, shoes on/off, hold her still...all that. All those things you do with your 20 pound child including taking them to the RR and checking her diaper, giving her snacks, etc...I get to to with my 100 pound mother and it isn't easy.
So aside from my exhaustion, mom had the nurses laughing. She asked the main nurse if she even had a diploma, and said she didn't know what she was doing...she said some pretty off the wall stuff, but mom was tired and frustrated as well because she had no idea what was going on, at least we had a laugh.
During our visit, the doctor suggested I take a depression test, she said I didn't look like myself, and looked worn down. I told her that I was and she took some time to sit and talk to me about what I go through as mom's primary caregiver. I was a little shocked, had no idea that I was physically portraying on the outside what I've been feeling on the inside, I guess with her expertise it was easy to detect. :(
I also had a conversation with the doctor about mom, her weight, her eating and how far she's declined. The doctor said she will eventually need to be on a feeding tube, maybe sooner than later, and hearing this reality this caused a lot of anger, pain, fear inside of me.
I'm afraid. No one seems to realize how fast she's declining, and how serious it is, and how hard it is for me, for us...just how hard it is. No one gives a fuck and that's not ok anymore.
People are selfish and I'm disgusted by it.
Monday, August 25, 2014
Sunday, August 24, 2014
Life goes on
It's been a while since I've had an update. I temporarily closed my main fb account because I needed a break from all of the fake happiness posts, and drama that people enjoy getting into although they say otherwise, lol...so annoying, not to mention all the cry baby crap and complaining...I can't believe people get so bent out of shape over a stupid broken phone, or lost keys...it's laughable, and I feel sorry for people like that, they seem soulless to me. Anyway, my Life with Mom fb page is still open and I try to update as much as I can without coming across as being depressed, or bitter.
Yes, everything I post is through my perspective and through my personal experience spent with my mom as her primary caregiver, my husband is her secondary caregiver and NO we DON'T get paid for this, are you fucking kidding me?! I can't believe how ignorant some people are, caregivers don't get paid...so ridiculous.
So yes, some of my posts might seem as if I'm depressed because I don't sugar coat situations, I do however hold back on ALOT of what I go through as a wife and mother, and even as a daughter, it's sad, but real...very real, and I try to share as much as I humanly can without putting all of me out there on a platform but you see, I have to learn from this situation, this is a life experience and if I don't learn from it, or educate others in the process, I feel uninspired and as if I'm letting mom down, and when I'm uninspired, I just might break.
I don't know, it's hard to explain. I do the best that I can with what and who I have. My hubby is my best support, he's quite amazing. His support has been a true testament to our 20 years of marriage. No one knows what we go through as parents, and as a married couple, or as a family; it takes a toll. It hurts deep when you have no one to turn to, or count on for any type of support, so when I mention my husband, I mention him with the utmost respect because it's MY mom, yet he helps and sacrifices so so so so so so much and more and he is the one I turn to, and depend on..
I just need to say that if you've never taken care of a sick elderly parent who can do anything for themselves, and who depend on you for food, water, showers, sitting, standing, eating, changing, grooming, lavatory assistance, and more including nursing them when sick and taking them to doctor's appointments all 7 days a week and you still have room in your heart to judge that person who does all of those things, I feel very sorry for you. I don't know how people can be so silly and ignorant, I don't know how highly judgmental people even function in our world, I mean...worry about yourself, judgmental people are weak, insecure people and I want nothing to do with them, (and neither should you); I need all the positivity I can get, because I am surrounded by my mom's sickness and inabilities 24/7 - it dulls me on the inside and hardens me, it doesn't make me soft, or weak, it turns me tougher...but there's a piece of me that won't ever give in to the toughness, a small piece that wears so thin, and that's afraid and that often feels lost and alone, but those are my emotions, no one will ever get me on that level...This is the hardest thing I've ever had to do. No more to say, until next time. Life goes on, I guess.
Yes, everything I post is through my perspective and through my personal experience spent with my mom as her primary caregiver, my husband is her secondary caregiver and NO we DON'T get paid for this, are you fucking kidding me?! I can't believe how ignorant some people are, caregivers don't get paid...so ridiculous.
So yes, some of my posts might seem as if I'm depressed because I don't sugar coat situations, I do however hold back on ALOT of what I go through as a wife and mother, and even as a daughter, it's sad, but real...very real, and I try to share as much as I humanly can without putting all of me out there on a platform but you see, I have to learn from this situation, this is a life experience and if I don't learn from it, or educate others in the process, I feel uninspired and as if I'm letting mom down, and when I'm uninspired, I just might break.
I don't know, it's hard to explain. I do the best that I can with what and who I have. My hubby is my best support, he's quite amazing. His support has been a true testament to our 20 years of marriage. No one knows what we go through as parents, and as a married couple, or as a family; it takes a toll. It hurts deep when you have no one to turn to, or count on for any type of support, so when I mention my husband, I mention him with the utmost respect because it's MY mom, yet he helps and sacrifices so so so so so so much and more and he is the one I turn to, and depend on..
I just need to say that if you've never taken care of a sick elderly parent who can do anything for themselves, and who depend on you for food, water, showers, sitting, standing, eating, changing, grooming, lavatory assistance, and more including nursing them when sick and taking them to doctor's appointments all 7 days a week and you still have room in your heart to judge that person who does all of those things, I feel very sorry for you. I don't know how people can be so silly and ignorant, I don't know how highly judgmental people even function in our world, I mean...worry about yourself, judgmental people are weak, insecure people and I want nothing to do with them, (and neither should you); I need all the positivity I can get, because I am surrounded by my mom's sickness and inabilities 24/7 - it dulls me on the inside and hardens me, it doesn't make me soft, or weak, it turns me tougher...but there's a piece of me that won't ever give in to the toughness, a small piece that wears so thin, and that's afraid and that often feels lost and alone, but those are my emotions, no one will ever get me on that level...This is the hardest thing I've ever had to do. No more to say, until next time. Life goes on, I guess.
Friday, August 1, 2014
Today
Picked green peppers from our back yard and made a veggie omelette for breakfast. Summer is almost coming to an end, looking forward to the fall, but I'll miss Robert as he goes back to teaching, and Moses as he's back to his full time schedule with work and school.
After breakfast, hubby and I went to see a 3D movie at the Bistro, it was good...I laughed a lot, and we shared some nachos. It was fun.
Moses spent the entire morning, and afternoon trying to renew his lost license, this should be a lesson the be extra careful when it comes to these things; he was at the dmv for 4 hours, but had to leave to be at work on time so he will have to go back on Monday. It's part of growing up I guess.
Made mom a sandwich and some cucumber juice for lunch while Robert spent time with the dogs. After mom finished her lunch, she took a nap and I laid down to do some reading by the window in my bedroom. It's been hot lately in the 100's, but the day light is perfect for reading. I can't read by artificial light, I've tried and it's too distracting, gives me headaches. Robert will often find me reading in the dark, a dim lamp is ok, but overhead light messes with me.
Mom got up from an hour nap and was hungry again, I gave her some homemade yogurt with honey and we did a little yoga; she complained as usual. Yoga and exercises are getting harder for her, she has pretty bad balance, is snarky, and has trouble moving around in general.
Some good friends gave us some gift certificates to some restaurants so we all had take out from Santa Fe Steakhouse for dinner; they have the best calamari and I opened a bottle of champagne, we finished that and sat down to watch a movie. Mom was not in the best mood so I was dealing with her confusion, she wouldn't stop asking us the same questions and started pacing so we turned off the movie while I took a walk with her, helped her in the restroom then put her in bed to watch tv for an hour, before I put her diaper on her then falls asleep.
I hope mom stays in bed tonight; I'm pretty tired myself. The rest of our evening will be spent sitting by the pool then a movie in bed if all is well, but you never know. Goodnight friends.
After breakfast, hubby and I went to see a 3D movie at the Bistro, it was good...I laughed a lot, and we shared some nachos. It was fun.
Moses spent the entire morning, and afternoon trying to renew his lost license, this should be a lesson the be extra careful when it comes to these things; he was at the dmv for 4 hours, but had to leave to be at work on time so he will have to go back on Monday. It's part of growing up I guess.
Made mom a sandwich and some cucumber juice for lunch while Robert spent time with the dogs. After mom finished her lunch, she took a nap and I laid down to do some reading by the window in my bedroom. It's been hot lately in the 100's, but the day light is perfect for reading. I can't read by artificial light, I've tried and it's too distracting, gives me headaches. Robert will often find me reading in the dark, a dim lamp is ok, but overhead light messes with me.
Mom got up from an hour nap and was hungry again, I gave her some homemade yogurt with honey and we did a little yoga; she complained as usual. Yoga and exercises are getting harder for her, she has pretty bad balance, is snarky, and has trouble moving around in general.
Some good friends gave us some gift certificates to some restaurants so we all had take out from Santa Fe Steakhouse for dinner; they have the best calamari and I opened a bottle of champagne, we finished that and sat down to watch a movie. Mom was not in the best mood so I was dealing with her confusion, she wouldn't stop asking us the same questions and started pacing so we turned off the movie while I took a walk with her, helped her in the restroom then put her in bed to watch tv for an hour, before I put her diaper on her then falls asleep.
I hope mom stays in bed tonight; I'm pretty tired myself. The rest of our evening will be spent sitting by the pool then a movie in bed if all is well, but you never know. Goodnight friends.
Wednesday, June 18, 2014
What I did on Mother's Day
I know it's been a while since I've posted a blog update, but did I ever tell you what I did on Mother's Day?
Well, my mother was very constipated and couldn't use the RR. She was pushing and pushing and complaining about the pain and I felt horrible because there was nothing I could do to help her, I massaged her intestines while she sat on the toilet, and gave her water and prune juice from a straw. My mother was on the toilet for over an hour that morning.
She pushed more, and fortunately "it" started coming out, but still was VERY difficult for her so I went to the kitchen and put on plastic gloves, got a trash bag and some wipes. I actually pulled feces hard as a rock out of my mother's rectum using my hands covered in gloves. I did gag a few times, because it didn't come out easily...I had to prod several times and it was a horrible smell since it was "backed up fecal matter", at the end of the endeavor I had to shower and make myself vomit.
Since then, it's happened a few more times. I got her some suppositories so it makes it a bit easier, but my mother is unable to communicate with me clearly so I have no idea when she is constipated until it happens and she's on the toilet.
Yesterday I went through the same thing with her because by the time I knew she was constipated, she was already on the toilet with feces half way out of her so couldn't place the suppository inside of her.
Mom moves a lot slower than what she used to and is not active. She gets her 2 walks a week and her stretches 3 times a week and drinks water daily as well as eats prunes and fibrous foods...it's not what she's eating, not eating, or doing that causes her to be constipated...it's that her body has slowed down significantly.
People with cognitive impairment have an increased risk of constipation, fecal impaction, and stercoral perforation. Immobility, a decreased awareness of thirst, and difficulty in communicating pain and discomfort can all contribute.
Well, my mother was very constipated and couldn't use the RR. She was pushing and pushing and complaining about the pain and I felt horrible because there was nothing I could do to help her, I massaged her intestines while she sat on the toilet, and gave her water and prune juice from a straw. My mother was on the toilet for over an hour that morning.
She pushed more, and fortunately "it" started coming out, but still was VERY difficult for her so I went to the kitchen and put on plastic gloves, got a trash bag and some wipes. I actually pulled feces hard as a rock out of my mother's rectum using my hands covered in gloves. I did gag a few times, because it didn't come out easily...I had to prod several times and it was a horrible smell since it was "backed up fecal matter", at the end of the endeavor I had to shower and make myself vomit.
Since then, it's happened a few more times. I got her some suppositories so it makes it a bit easier, but my mother is unable to communicate with me clearly so I have no idea when she is constipated until it happens and she's on the toilet.
Yesterday I went through the same thing with her because by the time I knew she was constipated, she was already on the toilet with feces half way out of her so couldn't place the suppository inside of her.
Mom moves a lot slower than what she used to and is not active. She gets her 2 walks a week and her stretches 3 times a week and drinks water daily as well as eats prunes and fibrous foods...it's not what she's eating, not eating, or doing that causes her to be constipated...it's that her body has slowed down significantly.
People with cognitive impairment have an increased risk of constipation, fecal impaction, and stercoral perforation. Immobility, a decreased awareness of thirst, and difficulty in communicating pain and discomfort can all contribute.
Thursday, May 22, 2014
A lot on my mind, yet nothing at all
Hello,
Just stopping in for a quick update. Just because I'm not writing or updating doesn't mean there's nothing going on. There is always something going on - we are constant; we don't stop even while asleep. Our minds are always working, our hearts are always feeling and our souls are always searching, at least it is from my perspective.
Just like our bodies and minds are constant, so is mom. Mom is constant; she might not be predictable, but she's always going, even when it appears that she isn't, mom is going through different cycles and changes and can never quite adapt to a "normal" schedule and if she can't adapt to a schedule, that means I can't either, so needless to say - I'm ever-changing.
Here's the thing with me...I expect the unexpected. I expect the most outlandish circumstances and behavior patterns when it comes to mom so I'm never all that surprised. I'm very adaptable - I'm like a chameleon, interchangeable. It's not chaotic, it's subtle. As much change mom goes through, she's also subtle and she's the least dramatic person I know. Mom doesn't cause scenes, mom doesn't speak out of place, mom doesn't interrupt, mom doesn't get involved when it doesn't involve her; mom is quiet. Mom is a simple person, mom has never been into jewels, name brand bags, shoes, cars, etc. Mom lived a simple life and did what she enjoyed and kept to herself except when she didn't.
Mom's personality is sheltered, quiet. I was never close to my mom, and I don't feel I've learned much from my mom at this point in my life - maybe I have, but can't see it; I don't know. I think not knowing mom so well has me making up for lost time by taking care of mom and learning from her, not from her as a person, but from her situation. Not being close to my mom growing up hasn't stopped me from caring and loving her - it has actually made me curious to the type of person mom was. I never really knew my mom. I can say things that mom liked. Mom used to love Captain and Tenile, Linda Ronstandt, Dolly Pardon, she loved Olivia Newton John, mom loved fairy tales, mom love poems and rhyme, mom loved The Wizard of Oz, mom loved Gone with the Wind and mom loved Jane Fonda - because of Jane Fonda, my mom grew to love aerobics and exercise then later running - she loved it with a passion, she even started running races and getting 1st in her age division time and time again - she built walls of trophies. Mom ran marathons - mom participated in triathalons. Mom did all these things, but not with me and not for me. Mom did these things for herself; they were her escape and I respect that, but unfortunately I can't relate.
In mom's situation right now, I can see some things in mom I never did...I see weakness, fear, I see mom become annoyed, I see her anger, her pain...I see her sadness. I see all these seemingly "weak" traits, but have to tell myself that this isn't mom - it's her disorder, her dementia. Sometimes it's hard to distinguish because I never really truly knew mom. Maybe we never really do know one another - we only know how that person can make up feel, and know what we see.
Here is a good thing: I see a funny side to mom. I see mom's sense of humor and I can joke with her because I know she enjoys laughing. Sometimes she can't figure out when I'm joking because of her condition, but the times when she's able to are fun times. Mom also has an extended vocabulary. She enjoys using her words which is a little sad to me, because she is constantly searching for words and they sometimes don't make it out of her.
All of this said and done - I have to say that this journey has been an interesting, soul searching
Just stopping in for a quick update. Just because I'm not writing or updating doesn't mean there's nothing going on. There is always something going on - we are constant; we don't stop even while asleep. Our minds are always working, our hearts are always feeling and our souls are always searching, at least it is from my perspective.
Just like our bodies and minds are constant, so is mom. Mom is constant; she might not be predictable, but she's always going, even when it appears that she isn't, mom is going through different cycles and changes and can never quite adapt to a "normal" schedule and if she can't adapt to a schedule, that means I can't either, so needless to say - I'm ever-changing.
Here's the thing with me...I expect the unexpected. I expect the most outlandish circumstances and behavior patterns when it comes to mom so I'm never all that surprised. I'm very adaptable - I'm like a chameleon, interchangeable. It's not chaotic, it's subtle. As much change mom goes through, she's also subtle and she's the least dramatic person I know. Mom doesn't cause scenes, mom doesn't speak out of place, mom doesn't interrupt, mom doesn't get involved when it doesn't involve her; mom is quiet. Mom is a simple person, mom has never been into jewels, name brand bags, shoes, cars, etc. Mom lived a simple life and did what she enjoyed and kept to herself except when she didn't.
Mom's personality is sheltered, quiet. I was never close to my mom, and I don't feel I've learned much from my mom at this point in my life - maybe I have, but can't see it; I don't know. I think not knowing mom so well has me making up for lost time by taking care of mom and learning from her, not from her as a person, but from her situation. Not being close to my mom growing up hasn't stopped me from caring and loving her - it has actually made me curious to the type of person mom was. I never really knew my mom. I can say things that mom liked. Mom used to love Captain and Tenile, Linda Ronstandt, Dolly Pardon, she loved Olivia Newton John, mom loved fairy tales, mom love poems and rhyme, mom loved The Wizard of Oz, mom loved Gone with the Wind and mom loved Jane Fonda - because of Jane Fonda, my mom grew to love aerobics and exercise then later running - she loved it with a passion, she even started running races and getting 1st in her age division time and time again - she built walls of trophies. Mom ran marathons - mom participated in triathalons. Mom did all these things, but not with me and not for me. Mom did these things for herself; they were her escape and I respect that, but unfortunately I can't relate.
In mom's situation right now, I can see some things in mom I never did...I see weakness, fear, I see mom become annoyed, I see her anger, her pain...I see her sadness. I see all these seemingly "weak" traits, but have to tell myself that this isn't mom - it's her disorder, her dementia. Sometimes it's hard to distinguish because I never really truly knew mom. Maybe we never really do know one another - we only know how that person can make up feel, and know what we see.
Here is a good thing: I see a funny side to mom. I see mom's sense of humor and I can joke with her because I know she enjoys laughing. Sometimes she can't figure out when I'm joking because of her condition, but the times when she's able to are fun times. Mom also has an extended vocabulary. She enjoys using her words which is a little sad to me, because she is constantly searching for words and they sometimes don't make it out of her.
All of this said and done - I have to say that this journey has been an interesting, soul searching
Thursday, April 10, 2014
This is the life of a Caregiver
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I recently applied for extra provider hours through the Star Plus Waiver services program from Superior. I was interviewed and asked a list of questions. I became very emotional during the interview and broke down and cried. I felt overwhelmed and realized everything that I do for my mom from the list of questions I was asked.
I cook for mom and feed her every day. I change mom every day (maybe more than once if she has an accident). I help mom in and out of her bed every day (several times a day). I take out moms chair and push her in to eat - then help her out of her chair every day (several times a day). I often cut moms food for her. If mom watches t.v. - I turn the t.v. on for mom. I brush moms hair every day. I try my best to do things with mom when I'm not feeling tired, overwhelmed or depressed - it's hard. I stopped doing things for myself like exercise and eating healthy because I'm busy getting mom to exercise and eat healthy and then get too depressed to love myself. If my son catches me crying - I pretend I have something in my eye or tell him my allergies are bothering me. I don't want him to see me crying.
Sometimes mom doesn't want to eat - she fights me with it. Sometimes mom doesn't want to take her meds - she fights me with it. Sometimes mom doesn't want to shower, change or exercise - she fights me with it.
Without a provider I shower mom, with a provider I STILL SHOWER MOM. I take mom on walks, I take mom for coffee and once a month, I take mom to have lunch or dinner at a restaurant.
I read to mom. I schedule all of mom's medical appointments, I take mom to all of her medical appointments (monthly - she has 2, sometimes more). I drop off moms prescription and pick it up at the pharmacy. I give mom her meds. I read about mom's illness and I give her natural remedies such as tumeric, coconut oil, flax and chia seeds, fish oil and vitamin D...I go to the health store to buy them and I give them to her. If mom needs new undergarments or clothes - I go and buy them for her.
If mom has an episode - it's ME who sits with her and calms her down, if mom can't sleep...I can't sleep because she will not stop knocking on my door. If mom is scared, it's me who calms her.
These were some (not all) of the questions that the interviewee went over with me.
This is the life of a Caregiver
Tuesday, March 25, 2014
Providing assistance
Interesting that some people that I know have the huge misconception that I get paid for taking care of my mom. No, I have never received a penny from any agency. When I first made the decision to leave my job I thought about being a paid provider for my mom, but at that time was told I couldn't be. Fortunately it worked out in my favor because I ended up qualifying for paid caregiver relief to give myself a break, so I chose an agency and they helped hire a provider for my mother who comes Mon-Fri 4 hours a day. (Those are our qualifying hours). The provider is actually there to relieve ME of my usual activities with mom during the time she is there, so this gives me time for myself, but not time with my family because my husband is working and my son is working and in school during those hours, so family time or date nights are rare, but that's ok because were doing a good thing being there for mom.
The paid provider cooks for mom, makes sure she eats and takes her meds, changes mom, showers mom (I shower mom when the provider doesn't show up and on weekends). The provider also does stretches with her, and does her laundry and helps with some housework. That's what a paid provider does...me, well I'm a caregiver and my time with mom is 24/7. This morning mom woke up at 6 am because she wet the bed so I had to clean her sheets, mattresses and clean/change her. The other night, mom woke up at 2am and was hungry so I gave her a snack. Last week there was a night where mom didn't even sleep so I laid on the sofa making sure she didn't get hurt.
Having caregiving assistance is great help, but no amount of help will ever replace the life I used to have with my husband and son before mom got sick 4 years ago.
I don't know what to think sometimes. I'm blessed and happy to be spending time with my mom, but I'm also tired and fight depression almost on a monthly basis. Unfortunetly I sometimes turn to food, then gain weight...then I start eating healthy and exercise. I often skip meals because I don't like preparing or cooking food for just me, and by the time I get mom's lunch ready, and sit her down to eat, I've lost my appetitie.
Some friends have reached out to me and that has helped me take my mind off of things, I also watch movies, listen to music and read books. I should probably do some more walking. I used to take a lot more walks with mom, but she has arthritis in her feet and walks very slow so it's easier to take short walks 1-2 times a week.
I try to keep as busy as possible and recently took up couponing..I've been saving ALOT of money plus keeping myself busy.
I'm lucky to have what I have, and lucky to be where I am and give thanks everyday.
The paid provider cooks for mom, makes sure she eats and takes her meds, changes mom, showers mom (I shower mom when the provider doesn't show up and on weekends). The provider also does stretches with her, and does her laundry and helps with some housework. That's what a paid provider does...me, well I'm a caregiver and my time with mom is 24/7. This morning mom woke up at 6 am because she wet the bed so I had to clean her sheets, mattresses and clean/change her. The other night, mom woke up at 2am and was hungry so I gave her a snack. Last week there was a night where mom didn't even sleep so I laid on the sofa making sure she didn't get hurt.
Having caregiving assistance is great help, but no amount of help will ever replace the life I used to have with my husband and son before mom got sick 4 years ago.
I don't know what to think sometimes. I'm blessed and happy to be spending time with my mom, but I'm also tired and fight depression almost on a monthly basis. Unfortunetly I sometimes turn to food, then gain weight...then I start eating healthy and exercise. I often skip meals because I don't like preparing or cooking food for just me, and by the time I get mom's lunch ready, and sit her down to eat, I've lost my appetitie.
Some friends have reached out to me and that has helped me take my mind off of things, I also watch movies, listen to music and read books. I should probably do some more walking. I used to take a lot more walks with mom, but she has arthritis in her feet and walks very slow so it's easier to take short walks 1-2 times a week.
I try to keep as busy as possible and recently took up couponing..I've been saving ALOT of money plus keeping myself busy.
I'm lucky to have what I have, and lucky to be where I am and give thanks everyday.
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