When I change mom, I squat down quite a bit, I also do this when I take her to the restroom- it's hard on my back...I do this 6-8 times a day, but because of yoga, my body has become stronger, but as I'm pulling mom's underwear up, and sitting her down so I can put her socks on, she bends over with her arms wide open to hug me, so I stand up and let her hug me, and I hug her back. I laugh and say...why are you hugging me, and she keeps hugging me, then says "God Bless You" so I say thanks mom, you too - then she stops hugging me and asks "oh, where is God" and I laugh, and say well, I think he's in your heart and she tells me, I guess I believe that. (but in a very slow, quiet shaky voice I have to strain to hear).
So mom has been suffering worse with her incontinence and although I take her to a restroom break every hour. Today, just 30 min after she used the restroom, she peed on herself. Not only did mom pee on herself, but she took her pants off to pee on the floor in her room. I actually slipped on the urine as I went into her room to help her - thank god for the swifter wet wipes....I am literally stocked up on them because you never know when an accident can occur! Lucky for me, our provider does all the cleaning in our home, so I manage to find the energy to clean up after mom's accidents, although it can get very old and very annoying. I have my good days, I have my bad days just like everyone else.
I've been dodging the fact that mom needs to wearing a protective pad, or adult diaper throughout the day, but I think it's so uncomfortable that I'm trying to avoid it as much as I can. Because mom has been peeing more often, I put a pad on her at 5 pm, but still take her to restroom breaks, using this as a backup, and it has worked.
Ok, so aside from that, I've been reading a lot more lately on caregivers and those who care for their parents. I've come to know and realize that through statistics, over 80% of caregivers do it alone, meaning they get no relief from other family members except for maybe the occasional 2 hours a month if they (we) are lucky. Lucky for me, with my own hard work and research, I qualified for a provider who has been with us a little over a year - I am so grateful to her, she really comes through when I need her, and sometimes swaps hours when I (we have something to do). I work with her schedule, and she works with mine. Funny how a stranger can turn into someone you value and count on daily.
So it's been 4 years since mom has lived with us here at home, and it's been almost 2 years since I've quit my job to stay home with mom full time to care for her. A lot, and I mean A LOT has changed in those 4 years. If you could walk in my shoes and see things through my eyes - living with my mom, living with this disease day to day, hour to hour, not trying to count the minutes, but taking it 1 day at a time just to survive the strain it places on the caregiver (me) and my family. I'm amazed at how resilient we have become, and amazed that it has worked as long as it has - no one has fallen apart, and this is because of the tremendous support I receive on a daily basis from my husband. He helps talk me through moments where I want to give up - or moments where I'm crying and not knowing why. I can't imagine doing any of this on my own without him.
Things get tough, things get emotional and life waits for no one. Mom still has life left in her - so she deserves whatever I have left to give when I can.
Friday, September 12, 2014
Friday, September 5, 2014
Tired
There's a never ending price that comes with taking care of a parent with Dementia. I was sick for 4 days with high fever, swelling, headaches and I'm mentally/physically exhausted. I'm angry, and I'm hurt, and I want to give up because I'm doing this alone and I have so much resent that's coming to the surface. I've realized that you can count on NO ONE and that NO ONE will ever be there for you.
I'm tired. Nothing more to say.
I'm tired. Nothing more to say.
Monday, August 25, 2014
A feeding tube?
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.
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.
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
Subscribe to:
Posts (Atom)