3 years ago, when our mom was in rehab, post 10 day hospitalization, I overheard a very difficult conversation between a 17 year old and med dir. Re early onset.
I became my mother's primary caregiver when I turned 35. I will be 37 in December. My mother will soon be 77. When she began to physically and cognitively decline, I was in the process of finishing PhD school and working full time. I had to move her directly in AL after her second hospitalization. The ALF is an hour and fifteen minutes from my home. Since moving to AL, I have financially supported her. While trying to get her back to a point of stability, scheduling doctor's appointments, taking her to doctor's appointments, handling her finances and whatever else, and visiting her on a weekly basis, I continued to work and continued my degree. When she began to decline, I was only 6 months away from graduating, but I had to postpone completing my degree for an additional year. Thankfully, I graduated this May. She wasn't able to attend my graduation. While I sometimes get very frustrated with my current situation, I have come to realize that a good amount of this frustration originates from grief. Because of having to do so much as well as being surrounded by people who do not allow one to grieve, I have been unable to grieve. My mom is my only parent, and I miss my mom a lot. I miss talking to her about things. I miss us doing things together. And I hate it for her. Sure, she made mistakes. She's human. But, she was a good person. She still is a good person, but she is a different person now. And it's hard.
I was 32 when I took on caregiving for my father and stepmother. My stepmother had had 2 catastrophic strokes and my dad was her caregiver for 3 years....until he had a heart attack and stroke on the same day that left him a hemiplegic. At the time this all came down, I had 4 children aged 4-12 years old, 2 with disabilities I had been dealing with for 5 years..and my husband had just left the Army and we had moved back home so that our families could finally help us with the kids. (We'd lived many states away for 8 1/2 years and had endured 4 deployments, so lots of time I was raising everyone on my own) I was suddenly thrust into elderly care POAs and Wills, LTC facilities, geriatric medicine, Medicare, Medicaid, APS, and family who ran far and fast away from us. 8 1/2 years of "can't wait until you can come back home so we can help you!" turned into 4 years of "we won't help you, deal with it". My kids SUFFERED the effects of this. My stepmother passed in facility care a year and a half after I placed her there. I put my dad into a LTC facility again after having him in my home for 2 1/2 years, just 7 months ago. Although I'm still POA and executor for him, I don't see or speak to him now...the damage to my established family was just so great and I need to be mom and special needs caregiver again. Especially since in 3 years my most disabled child will be an adult and this whole thing starts all over again and will continue for the duration of my or his life. My dad was 68 when he had his heart attack and stroke. He didn't take care of himself or manage his healthcare. Even tho my grandfather had multiple cardiac issues for many years before his death. My dad just expected to live the high life with his rich new wife with no responsibilities and that they'd die together peacefully in their sleep. He still expected to live high on the hog while living with us, and resented the fact I had so many children because it meant I couldn't devote my whole life to him.
With them out of the picture now, at age 37, I finally feel like I can parent my children properly again. Do things with them that I couldn't before. I'm actually able to homeschool my son with disabilities again (he did much better in homeschooling before I had to put him in public school due to the responsibilities of caring for my dad). I have the ability to spend quality time with my oldest before he graduates high school and leaves home next year. I have time to work with my daughter with Aspergers and mutism on all her many varied aspirations (she's quite the busy girl now that we can work on her struggles). I can leave the house with my youngest daughter for all her extracurricular activities and community service work.
I've already told my mother, than while I love her more than life itself, I will never personally be her caregiver or the caregiver for my stepfather. I have no problem overseeing things, being POA, etc..but she better have her ducks in a row because I'm not doing this mess again. My sister can have her turn, especially since she left me in the lurch on our dad and stepmom. My mom totally gets this, and at 64 years old she makes sure she's diligent with hers and my stepfather's medical care. My stepdad isn't the healthiest guy, and mom does have some autoimmune issues, but they're doing great all things considered.
Thank you Upstream! I am not going to give up, but my mother will need Medicaid at some point for placement; however she gave my loser brother so much money that she will not be able to qualify for Medicaid and who knows when she will?! I just have days where I feel nothing changes for me...as if I am locked in time at the same place doing the samething...not moving as the world keeps moving forward!
About our parents generation, I met a woman (Mrs. B) about 4 wks ago who has a daughter my age and we got talking about dementia and she stated "I don't know what happened to my generation. My parents and grandparents didn't have dementia. I wonder what my generation did to have that horror disease!" Mrs. B also stated "how many of her friends have dementia and her daughter keeps watching her for the signs." I could tell that she was terrify of getting it. The few hrs I spent with her as my BF was working with her husband she was great mentally and physically.
I wonder if there is something to having dementia and how it was socially acceptable of drinking booze and smoking cigarettes in their time, but I am sure Benzos could play (big) apart in it as well. That generation did something or was expose to something. Or could it just be that they are living longer than their parents?!
Upstream, I am sorry to hear about your situation and about your dad. It is so hard to see our parents go downhill, especially seeing who they once were fade into an empty shell. How sad indeed!! They missed out on so much just because they didn't take care of themselves!!!
Shell38314, I am so sorry to hear your story!! I don't understand why there is so much dementia in our parents' generation!! It's a huge growing problem that people don't realize until it directly impacts their lives. My parents' parents lived much better retirement lives. Science is increasing the years for the body - all of it except for the brain. In the future I believe that most people will potentially live for decades past their ability to have independent and productive lives.
My parents took Benzodiazepines for almost 40 years and I think the meds fried them both. The nurse at my dad's memory care says many of the residents are on Benzos. These drugs cause physical dependence and have many, many negative side effects. There is no way we can overcome the damage done to my parents & family. My parents also began drinking heavily during their later years, which accelerated their decline. I think a heavy reliance on prescription drugs may be causing some of the increase in dementia.
Please don't give up your life for your mother. At some point try to find suitable placement somewhere. You deserve your life and happiness too.
Wow, Upstream, what you wrote sounds like I could have written it. In fact, most of what was said here is all to filmer.
I am in my mid 40's and don't have much of a life. Most days, I feel so overwhelmed that I can't breath! I see my neighbors who are around the same age working, starting businesses, fixing up their houses...they are moving forward! I had a career that I loved, but had to quit when I got sick then as I was getting better my dad got pc and passed away. Then I realized my mother could not take care of the family home, my brother was abusing her mentally and financially (can't prove it). Then I got hit in the head with a brick of "mom has VaD!" Ouch!!!
I had to go through so much already and I know it will just get worst!
Like most, money is tight and as of right now my mother sleeps a lot and is pretty easy going (this was not always the case). Sigh!
But when I am alone I wonder "what is going happen to me?" "How am I going to get my life back?" "What did I do to deserve this?" "Will my dreams ever come true; will I ever be able to work again?" I need too, I need to plan for my future!
Our house needs major renovations, but there is no money to do it!
My mother is 76 and seems like she is in her 90's and she has given up. So while other parents are working or off living their lives my mother sleeps all day and most the time doesn't even know what day it is! She has no clue what I go through every day:( Or how I feel like my life has been stolen from me! I do tell myself that I will not let her disease or her run my life, but really...there isn't anyway to stop it! Mother knows where she is at and who I am, but doesn't really think about how when she was my age she got to live her life the way she wanted. She didn't have to care for any of my grandparents! She doesn't know or care what the cost is to me:( Yes I know her brain is broken, but my heart is broken too!
So, here I am reading the horrible stories knowing I too will be walking down that path feeling like my life is all ready over...I just didn't know it!!
I guess today is just a bad day😵
Thank you for reading and the wonderful support I have received here.
29 and afraid that I will never progress in my own life because I have been taking care of my mother for 5 years now. Money is tight and the state refuses to give her more hours with an Attendent. Part time jobs don’t pay the bills so I’m stuck working as a caregiver for her and hustling at the same time 24/7. I’m tired and terrified every single day.
So my dad has been in a memory care facility for over 2 years. Yesterday, I was visiting, and his former business partner was there (much to my surprise). Former business partner is just a few years younger than my dad, but is placing her MOM there. Wow. I feel like my dad missed so much. His former business partner is traveling and looks like a million bucks, while my dad sits or sleeps all day in depends. It's awful.
I have been dealing with my parents for 5 years now,,( dad passed, now just mom ) I am 61 and mom is in her late 80s. Imagine my surprise at the start of my journey, to find a co worker in his late 20s whose dad had just been diagnosed. His dad is younger than I am! HIs mom still works, and he and his sister ( who both work with me) use a lot of FMLA and such to help out. I know it saddens him to see the dad he counted on go downhill so fast. He askes me for advice, but our journeys are so very different.
When I was around 20 I sat in a Dr. office with my mom as he diagnosed her with early onset Alzheimer's. I am now 30. I will probably be a bald zombie by 35. All dark humor aside. It is impossible to grasp what Alzheimer's really is around that age. I moved back home after college and have been helping my mother ever since. I have not seen any nursing homes near by that I am comfortable placing my mom in. Finances do not permit me to place her somewhere that I would feel comfortable leaving her. Sometimes you really do get what you pay for and I couldn't live with myself if I left her somewhere that just met the qualifications of "affordable". You expect to have more time with your parent before their memory declines, I, in my silly youth imagined that my mom would live a vibrant life up until around 80, then maybe some form of decline. I imagined I would at least have a family of my own for support. I even imagined my mom's family would be helpful. All of those things are still just that, a part of my imagination. The reality is that there is no way to prepare for this and it's hell. The one person that a 20 and even 30 something year old woman turns to for advice is their mom. Well that's who I'm caring for. I thought I would have decades of time to be a daughter/friend and learn from my mom. The reality is I haven't had her as a "mom" in a very long time and I never will again.
How are we? We wish we had more time to be mothered or fathered. We wish we had time to receive more advice. We fluctuate between denial, duty , and guilt. We are learning about taxes and IRA's the hard way. While others are on vacation we are taking the car keys away from our angry parents and "putting our foot down" Others are getting engaging and I'm wondering why the hell a product would be named " Depends" if it's so damn leaky and unreliable. All in all "we are in some deep sh#^ dude"! ( Literally and figuratively) <insert sad chuckle>
Thank you so much for asking that question. Thank you for considering age. Most of all thanks for reading this "novel " I just typed.
Wow! So Sad! I consider myself and my family to be on the "young" side of dementia. I was still in my 40s when I had to get involved in my dad's care and it's been going on for several years now. I run a small business (that I took over from my parents so that they could be free & travel), and this "dementia detour" has been very tough on my career. Needless to say, as a Gen-X-er, I need to be in the workforce full time for many, many more years. My parents' quality of life wound down in their 60s and they did not have the retirement envisioned. A lot of it was due to depression and alcohol abuse which accelerated through their 60s.
Mom refused to care for my dad and said he was "my responsibility" so I had to move him into memory care. She lives alone and is miserable. I have to take her to many of her doctor's appointments and I am typically the only "kid" accompanying their parent, even though I see a lot of patients that are older than my mom. When I visit dad's memory care facility, I run into visitors that I think are there to visit a spouse but are really there to visit a parent!
I always say that my parents did not want to be in their 70s, so they just skipped and went right to their 80s! I am jealous of my friends and peers whose parents are still living independently and have a decent quality of life. I have friends with parents who still work. My parents haven't done anything productive or meaningful in over a decade. What a waste!! And yes I'm bitter about what's been dumped on me.
With them out of the picture now, at age 37, I finally feel like I can parent my children properly again. Do things with them that I couldn't before. I'm actually able to homeschool my son with disabilities again (he did much better in homeschooling before I had to put him in public school due to the responsibilities of caring for my dad). I have the ability to spend quality time with my oldest before he graduates high school and leaves home next year. I have time to work with my daughter with Aspergers and mutism on all her many varied aspirations (she's quite the busy girl now that we can work on her struggles). I can leave the house with my youngest daughter for all her extracurricular activities and community service work.
I've already told my mother, than while I love her more than life itself, I will never personally be her caregiver or the caregiver for my stepfather. I have no problem overseeing things, being POA, etc..but she better have her ducks in a row because I'm not doing this mess again. My sister can have her turn, especially since she left me in the lurch on our dad and stepmom. My mom totally gets this, and at 64 years old she makes sure she's diligent with hers and my stepfather's medical care. My stepdad isn't the healthiest guy, and mom does have some autoimmune issues, but they're doing great all things considered.
About our parents generation, I met a woman (Mrs. B) about 4 wks ago who has a daughter my age and we got talking about dementia and she stated "I don't know what happened to my generation. My parents and grandparents didn't have dementia. I wonder what my generation did to have that horror disease!" Mrs. B also stated "how many of her friends have dementia and her daughter keeps watching her for the signs." I could tell that she was terrify of getting it. The few hrs I spent with her as my BF was working with her husband she was great mentally and physically.
I wonder if there is something to having dementia and how it was socially acceptable of drinking booze and smoking cigarettes in their time, but I am sure Benzos could play (big) apart in it as well. That generation did something or was expose to something. Or could it just be that they are living longer than their parents?!
Upstream, I am sorry to hear about your situation and about your dad. It is so hard to see our parents go downhill, especially seeing who they once were fade into an empty shell. How sad indeed!! They missed out on so much just because they didn't take care of themselves!!!
My parents took Benzodiazepines for almost 40 years and I think the meds fried them both. The nurse at my dad's memory care says many of the residents are on Benzos. These drugs cause physical dependence and have many, many negative side effects. There is no way we can overcome the damage done to my parents & family. My parents also began drinking heavily during their later years, which accelerated their decline. I think a heavy reliance on prescription drugs may be causing some of the increase in dementia.
Please don't give up your life for your mother. At some point try to find suitable placement somewhere. You deserve your life and happiness too.
I am in my mid 40's and don't have much of a life. Most days, I feel so overwhelmed that I can't breath! I see my neighbors who are around the same age working, starting businesses, fixing up their houses...they are moving forward! I had a career that I loved, but had to quit when I got sick then as I was getting better my dad got pc and passed away. Then I realized my mother could not take care of the family home, my brother was abusing her mentally and financially (can't prove it). Then I got hit in the head with a brick of "mom has VaD!" Ouch!!!
I had to go through so much already and I know it will just get worst!
Like most, money is tight and as of right now my mother sleeps a lot and is pretty easy going (this was not always the case). Sigh!
But when I am alone I wonder "what is going happen to me?" "How am I going to get my life back?" "What did I do to deserve this?" "Will my dreams ever come true; will I ever be able to work again?" I need too, I need to plan for my future!
Our house needs major renovations, but there is no money to do it!
My mother is 76 and seems like she is in her 90's and she has given up. So while other parents are working or off living their lives my mother sleeps all day and most the time doesn't even know what day it is! She has no clue what I go through every day:( Or how I feel like my life has been stolen from me! I do tell myself that I will not let her disease or her run my life, but really...there isn't anyway to stop it! Mother knows where she is at and who I am, but doesn't really think about how when she was my age she got to live her life the way she wanted. She didn't have to care for any of my grandparents! She doesn't know or care what the cost is to me:( Yes I know her brain is broken, but my heart is broken too!
So, here I am reading the horrible stories knowing I too will be walking down that path feeling like my life is all ready over...I just didn't know it!!
I guess today is just a bad day😵
Thank you for reading and the wonderful support I have received here.
You expect to have more time with your parent before their memory declines, I, in my silly youth imagined that my mom would live a vibrant life up until around 80, then maybe some form of decline. I imagined I would at least have a family of my own for support. I even imagined my mom's family would be helpful. All of those things are still just that, a part of my imagination.
The reality is that there is no way to prepare for this and it's hell. The one person that a 20 and even 30 something year old woman turns to for advice is their mom. Well that's who I'm caring for. I thought I would have decades of time to be a daughter/friend and learn from my mom. The reality is I haven't had her as a "mom" in a very long time and I never will again.
How are we? We wish we had more time to be mothered or fathered. We wish we had time to receive more advice. We fluctuate between denial, duty , and guilt. We are learning about taxes and IRA's the hard way. While others are on vacation we are taking the car keys away from our angry parents and "putting our foot down" Others are getting engaging and I'm wondering why the hell a product would be named " Depends" if it's so damn leaky and unreliable. All in all "we are in some deep sh#^ dude"! ( Literally and figuratively) <insert sad chuckle>
Thank you so much for asking that question. Thank you for considering age. Most of all thanks for reading this "novel " I just typed.
Have a good night guys.
Abbie
Mom refused to care for my dad and said he was "my responsibility" so I had to move him into memory care. She lives alone and is miserable. I have to take her to many of her doctor's appointments and I am typically the only "kid" accompanying their parent, even though I see a lot of patients that are older than my mom. When I visit dad's memory care facility, I run into visitors that I think are there to visit a spouse but are really there to visit a parent!
I always say that my parents did not want to be in their 70s, so they just skipped and went right to their 80s! I am jealous of my friends and peers whose parents are still living independently and have a decent quality of life. I have friends with parents who still work. My parents haven't done anything productive or meaningful in over a decade. What a waste!! And yes I'm bitter about what's been dumped on me.