SuperGirl, I had always pride myself with having excellent logistical skills.
The time I set up for my parents to have caregivers in the house to help them out. I found a great nice caregiving Agency, interviewed them while my Mom was still in the hospital after a really bad fall, the Agency interviewed me and tour the house. Lot of paperwork.
Everything was set up like clockwork, schedules were in place. Then on the third day, my Mom shooed the caregiver out because Mom caught the caregiver cleaning Mom's refrigerator. Oh dear, we have a problem in the room, and it is Mom. Dad liked the caregivers, so he and Mom would clash over this idea.
Then I had to sit at my home on pins and needles, getting very little sleep due to worry, etc. I was a senior myself, so any hands-on care was out of the question. So why did I think this was going to be simple? Mainly because I never envisioned my parents becoming a risk. I never got to see my grandparents age, so this was new territory for me.
It's like the little engine that could - I think I can, I think I can, I know I can, I know I can... hey, who the heck tore up the tracks...... @%$#&... 💣 💥 !!
Having cared for elderly parents for years and a prickly, constantly ill DH....yeah, I was Wonder Woman for a few years.
12 years after all the CH began, I am wiped out. Emotionally, I cry all the time, I am overly sensitive to everything and my DH is not doing well--and I don't know if I am distraught with the thought he may not live a lot longer or relieved that he may be choosing early death (2 heart attacks and refusing to be compliant in his post op therapy)......
I don't know if I can. The train was hasn't been on the tracks in years!!
I have been a caregiver for 15 years now. My father, my brother and my mother have each died in my arms; my husband with dementia remains. I did have a breakdown (mental exhaustion due to caregiving was the neurologist’s official diagnosis) in 2015. My husband went to a nursing home while I recouped and he rehabbed from 3 major surgeries in 11 months. He has been back home now for 14 months. I go along, whistling in the dark, “I’ve got this”, for about 3-4 weeks, then I realize I am walking on thin ice again. I go back and forth, almost losing it then regrouping. I have no idea when that day will come, again, when I am useless to him and to myself. Maybe he will go to heaven before my brain gives out on me again. It took 18 months to regain my senses fully. Caregiving can be hell on earth. It was easier to care for my parents and brother simultaneously than it has been to take care of my husband.
Oh boy, that was always the way! Finish cleaning up from one crisis or another and finally getting back on track, thinking things were going to go as planned... ... ... and BaWham!!!! Next dilemma, another let down or disappointment, another speed bump. It made my head spin.
There were days where I definitely felt like superwoman. I had even made jokes about being a superhero. Then There Were the Days I cried myself to sleep. I think even superheroes need a break they just never showed that on TV.
Oh my God yes all the the time. I will have put out one fire or preempted one disaster and finally start to feel like I have a handle on things. I’m walking along with a little swing in my step, music playing, and then WHAM!!! Cast iron skillet in the face!
Goodness yes! Both parents are in AL each with a different variety and “stage” of dementia. Here are the things I learned pretty quickly: 1. It takes a team. I have to be in close communication with their docs and the facility to get help and support (I live at the other end of the Country). 2. There will be some things that just aren’t fixable and then I have to tell my folks and myself tomorrow might be a better day. 3. When I’ve reached the limits of what can be done I have to let go and let life happen. 4. I have a responsibility (to myself and those I love) to live my life and take care of myself. I cannot give from an empty cup. 5. Everyone is doing the best they can, including me and my folks. Try not too expect too much from yourself or anyone else. This will allow you to accept whatever comes (when things do seem to fall apart) without as much disappointment. Hugs and peace to you!
Yes!!! I cry almost daily! Thought I was the only one. Moved dad into a 55+ apartment near me and am constantly worried he’ll get evicted for bothering the management in the office,(about how to get his drivers license back) “renovating”(he takes out the screen door occasionally) and wandering into the road in his PJs(going to the store for cigarettes)... I go twice a day and he’s always home... but then the management office is like having a bad parent-teacher conference! Assisted living is cost prohibitive, and they won’t take a suicidal resident. His early dementia has him running his mouth about being “better off dead”- a big red flag. Since he just moved here 2 weeks ago we are still waiting to see a geriatrician. So I’ve cried daily all summer during the hell of his hospital discharge, moving, and adjusting - plus the thin ice of worrying what he’s doing NOW when I’m nit there. He’s irrational and combative and wants NO caregiver near him! He showers/changes clothes once a week under argument and protest. I’m dying here! With my own health issues And a full time job I’m ready to crack.
Agree with everyone and my journey was only 3 yrs. of actual care. My brother told me I was the problem, meaning I wanted too much. Thanks to a daughter who is an RN working in rehabs, nursing homes an AL, I was explained how nursing homes rehabs work. Not that I didn't ask my questions and dealt with Moms comfort. But asked daughter what to complain about and what to let go. The only time I felt I could relax was when she was in a NH. I gave up doing her laundry so all I had to do was visit. She was taken good care of. I guess I eased into the care. As the oldest and a girl its always been me. When Mom began to fail, my nephew was living with her so he managed her pills. A hospital stay it became apparent she could no longer live in her house so off to mine. Here is where I found I am not a caregiver. Physically it was hard. I was 65 Mom 86. Daycare was great but only lasted till 2:30. Eventually an AL then a NH. All the time though, I worried and filled out forms. Hated I had to complain and had to do all the paperwork. How I hate forms. Trying to spend down for Medicaid. Wanted to sell the house and then was glad we didn't because...it meant spending down again. I didn't like watching Mom decline and get frail. I hated that I had no patience and wasn't that loving daughter you see in the commercials. Thats part of the problem I think, caregiving is romanticized. And its far from that. My brain was just full of trying to remember this and that. I also have a disabled nephew to contended with. I am tired.
I didnt plan.on this..i am not stong anymore.. thought i could do it all but i cant..mom yelling and screaming all night and day and seroquel is not doing anything. Doc said mom had early dementia. No assistance because she is not qualify for.medicaid.. this has been going on for 5 years..i ws able.to work n do it with assistance and now i cant. My life stops..no one wants to make decisions..they are all waiting for the inevitable..that dreading phone call...
No not at all. Although my mother is a kind person and grateful now for what I do for her she resisted suggestions for years. I also think I have some of the weaknesses I do due to her personality. But then I'm not all that bad so maybe it's a draw but when a lot starts to fall apart at the same time I want to pull the covers over my head. Actually I really don't want to but it can be hard to find strength I need to persevere. Perhaps I am not the best person to have answered this because I never feel totally capable.
It is sooo normal to feel strong and capable until you don't. Most people who take on caregiving do so without fully realizing how much time, energy, attention, care, etc. is needed, and no one really teaches you how to take care of yourself while caring for someone else. Rarely is there anyone who will help you to address how your past relationship with this person impacts your caregiving, and your feelings about caregiving, or how to deal with someone's personality as they age, and may become more of who they were in life, or become someone different... The list of issues goes on and on. It's why I started a telephone support group for caregivers so that there would be someone who could address these issues and so many more... I provided care for my husband for 20 years and participated in caregiving for my parents. So, that said, SuperGirl, know that you are not alone in your feelings or in your reality. Seek support, whether it's a caregiver support group, a community organization, a class, meditation, hired help for your mother, etc. Know that reaching out is critical for your own sanity and peace of mind. Wishing you ease, and sending a virtual hug of encouragement and support.
When I first noticed memory lapses, I started with learning about dementia. I knew there was no way I could personally care for our mother (physically and emotionally) so I also explored options. We were lucky in that dad had a good job, great pension and they saved a lot. Tried feeding what I learned to my brothers, but they were clueless! After checking out one place, they were both saying 'gee, for that price I'll take her in!' This is NOT like when our mother and her sisters shared the care of our grandmother - she did not have dementia, and passed in her 70s. She was easy to care for. Dementia is NOT easy to care for!!!
As others and you have said, you can feel like things are under control, you have good plans in place and then WHAM! Although our mother is now in MC, there are still those moments when I get calls (she gets out of control with some kind of sun-downing and they want ME to come deal with it!) Generally they can redirect/refocus her, but once in a while... nope. I had to fight the doctor to get Lorazipam ordered for those times. Dealing with all the finances, paperwork, forms for various issues, coordinating clean out/fix up of condo, etc has been on my plate, and YES, absolutely just that can get overwhelming at times! Thankfully the condo is finally on the market (over a year and a half, mostly due to my efforts!), so that will be off my plate, hopefully very soon!
Many cannot afford in home care help or AL, so they have to continue on this road to hell. I give kudos to all who have to do this, including the MC staff at mom's place who do the hands on care (they are the lowest paid on that totem pole.)
So, as long as you can realize this is "normal" and can find ways to alleviate those 'moments', know that you are not alone! It helps to know that you are not crazy, but it does not take away the frustrations. Do try to find some ways to get some help - Medicare, Medicaid and VA do provide some limited in-home help, so long as the person in question will accept hands-on outside help. As some have noted, this can be difficult. We tried that method first, but mom insisted she was fine, independent, can cook and clean, none of which was really true. After a few months of just one hour/day to check her meds were taken (locked dispenser) and basic check, she refused to let them in. Regroup, plan B.... move, which she totally was against! It was not easy either, but finally we got that done, so we know she is cared for and is in a safe place.
I don't know that I've ever felt like Superwoman, but some days are definitely better than others. I guess for me it feels like some days I'm the windshield and other days I'm the bug. And some days, I'm the bug on the cracked windshield lol.
Oh God I can relate to this. I so deluded myself, while dealing with very messy divorce, caretaking NDad through a whole slew of hospitalizations, special needs kid, etc . Living on coffee and hospital food and somehow thinking "yeah, I've got this."
Wow, was I ever wrong. In addition to the harm I was doing to myself and impending burnout, as I'm dealing with narcissist, I ended up dealing with a mob of user types who have been manipulated into thinking there will be a payday somewhere, somehow if they harass and guilt trip me enough on behalf of my father to do even more for him.
Of course NDad is sitting in the middle of it all laughing at all the drama. He's been in control, finances secure, zero intent of sharing anything with anyone. So moral of the story, care giving for very ill senior, especially a narcissist, necessitates you do your own excellent self care. No super hero stuff, it's just not reality.
@FrazzledMama, "some days I'm the windshield and other days I'm the bug. And some days, I'm the bug on the cracked windshield lol."
yes I get this so well, I think I can do it because I miss her and I hate my mother is three hours away living at home with my father who hates me and leaves her at home alone, doesn't spend anytime with her and it breaks my heart because I want to be that child who protected her when I was little and I cant save her now
The time I set up for my parents to have caregivers in the house to help them out. I found a great nice caregiving Agency, interviewed them while my Mom was still in the hospital after a really bad fall, the Agency interviewed me and tour the house. Lot of paperwork.
Everything was set up like clockwork, schedules were in place. Then on the third day, my Mom shooed the caregiver out because Mom caught the caregiver cleaning Mom's refrigerator. Oh dear, we have a problem in the room, and it is Mom. Dad liked the caregivers, so he and Mom would clash over this idea.
Then I had to sit at my home on pins and needles, getting very little sleep due to worry, etc. I was a senior myself, so any hands-on care was out of the question. So why did I think this was going to be simple? Mainly because I never envisioned my parents becoming a risk. I never got to see my grandparents age, so this was new territory for me.
12 years after all the CH began, I am wiped out. Emotionally, I cry all the time, I am overly sensitive to everything and my DH is not doing well--and I don't know if I am distraught with the thought he may not live a lot longer or relieved that he may be choosing early death (2 heart attacks and refusing to be compliant in his post op therapy)......
I don't know if I can. The train was hasn't been on the tracks in years!!
... ... and BaWham!!!!
Next dilemma, another let down or disappointment, another speed bump. It made my head spin.
There were days where I definitely felt like superwoman. I had even made jokes about being a superhero. Then There Were the Days I cried myself to sleep. I think even superheroes need a break they just never showed that on TV.
Try not too expect too much from yourself or anyone else. This will allow you to accept whatever comes (when things do seem to fall apart) without as much disappointment.
Hugs and peace to you!
Rarely is there anyone who will help you to address how your past relationship with this person impacts your caregiving, and your feelings about caregiving, or how to deal with someone's personality as they age, and may become more of who they were in life, or become someone different... The list of issues goes on and on.
It's why I started a telephone support group for caregivers so that there would be someone who could address these issues and so many more... I provided care for my husband for 20 years and participated in caregiving for my parents.
So, that said, SuperGirl, know that you are not alone in your feelings or in your reality. Seek support, whether it's a caregiver support group, a community organization, a class, meditation, hired help for your mother, etc. Know that reaching out is critical for your own sanity and peace of mind.
Wishing you ease, and sending a virtual hug of encouragement and support.
As others and you have said, you can feel like things are under control, you have good plans in place and then WHAM! Although our mother is now in MC, there are still those moments when I get calls (she gets out of control with some kind of sun-downing and they want ME to come deal with it!) Generally they can redirect/refocus her, but once in a while... nope. I had to fight the doctor to get Lorazipam ordered for those times. Dealing with all the finances, paperwork, forms for various issues, coordinating clean out/fix up of condo, etc has been on my plate, and YES, absolutely just that can get overwhelming at times! Thankfully the condo is finally on the market (over a year and a half, mostly due to my efforts!), so that will be off my plate, hopefully very soon!
Many cannot afford in home care help or AL, so they have to continue on this road to hell. I give kudos to all who have to do this, including the MC staff at mom's place who do the hands on care (they are the lowest paid on that totem pole.)
So, as long as you can realize this is "normal" and can find ways to alleviate those 'moments', know that you are not alone! It helps to know that you are not crazy, but it does not take away the frustrations. Do try to find some ways to get some help - Medicare, Medicaid and VA do provide some limited in-home help, so long as the person in question will accept hands-on outside help. As some have noted, this can be difficult. We tried that method first, but mom insisted she was fine, independent, can cook and clean, none of which was really true. After a few months of just one hour/day to check her meds were taken (locked dispenser) and basic check, she refused to let them in. Regroup, plan B.... move, which she totally was against! It was not easy either, but finally we got that done, so we know she is cared for and is in a safe place.
"yeah, I've got this."
Wow, was I ever wrong. In addition to the harm I was doing to myself and impending burnout, as I'm dealing with narcissist, I ended up dealing with
a mob of user types who have been manipulated into thinking there will
be a payday somewhere, somehow if they harass and guilt trip me enough on
behalf of my father to do even more for him.
Of course NDad is sitting in the middle of it all laughing at all the drama. He's
been in control, finances secure, zero intent of sharing anything with anyone.
So moral of the story, care giving for very ill senior, especially a narcissist, necessitates you do your own excellent self care. No super hero stuff, it's just not reality.
@FrazzledMama, "some days I'm the windshield and other days I'm the bug. And some days, I'm the bug on the cracked windshield lol."
I think I'm a cracked bug, lol.