notrydoyoda Posted January 2012
The Caregiver & Dysfunctional Families: How are you doing?
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Order or pick up a pack of womens depends. Open the pack. Leave 3 or 4 on table next to her bed and leave 3 sitting out in the bathroom.
No need to say anything. Just have them available and she can choose to use them if she wants when you are out.
Go visit friends, see a movie, go to church etc. You are entitled to a life.
"One of the best ways to make other people happy is to be happy yourself."
today’s words of wisdom:
"Make sure your worst enemy
is not living between your own two ears."
Both I and my ride or die with our new chronic health challenges know that we have less life expectancy than we once had. Honestly, that's ok for we have talked about how as thinking people, we just don't feel like we fit in with being here much longer. We've each mentioned oh, wouldn't it be nice if one could know and just ride of into the sunset and just go on. We are both exhausted warriors who some others still see us as heroes but we aren't anymore.
Congrats on seeking the answers and feeling better.
As Walter Conkite closed the news each night, "and that's the way it is"
goodnight!
My psychiatrist has put on hold my various mental health diagnoses for she's concluded that narcolepsy is very likely my foundational health problem.
She's the one who pointed in me in the direction of being tested for Narcolepsy back in the fall of 2023 which my sleep doctor begrudgingly had done in March of 2023. Yes, I have narcolepsy. I also have sleep apnea.
I was able to secure a narcolepsy specialist at Duke, Dr. Spector early this past June (2025). His help and being part of the Narcolepsy Life Academy weekly coaching experience since last November has led me to a much better place.
My psychiatrist now says this is the best condition she has seen me in over the past two years. She hasn't changed any of my meds but I am sure we will have that conversation soon with how improved my life is now..
At 68, I have 9 chronic health challenges in addition to narcolepsy. Not having Narcolepsy diagnosed likely explains why my sleep apnea treatment was never fully helpful. I may be wrong, but here's my historical trail of collateral damage.
1. Obesity
2. High cholesterol.
3. Being diagnosed with depression, then bipolar (however, I don't have a medical record of a manic experience leading to this diagnosis), plus inattentive ADD, and generalized anxiety, all contributing to my going on full disability in my 40s. (Note: narcolepsy shares these mental health symptoms in common.) -2003.
4. Sleep Apnea caused by weight gain.
5. Hypogonadism caused by weight gain.
6. Osteoporosis from the Hypogonadism.
7. Pre-diabetes and diabetes from unresolved weight gain connected with my continued poor sleep.
8. Vascular Parkinsonism from dealing with both high cholesterol and diabetes
9. Two more overlapping comorbidities i.e. Degenerative Disk Disease and DISH back disease are connected as well by the cluster of secondary issues connected with undiagnosed narcolepsy as listed above. They indirectly can lead to the development of these two extra chronic health challenges which I have as well. To be clear, it is not a direct cause-and-effect relationship.
Since being diagnosed with Narcolepsy in March of 2023 two months before turning 67, I have been diagnosed with DDD, DISH back disease plus most recently, Vascular Parkinsonism. Evidently, gaining chronic health challenges after age 67 carry a greater impact on one's life expectancy.
I have updated all of my doctors on this and politely reminded them that they work for me and my health. My lead doctor, the narcolepsy specialist requested the contact information for anyone in particular that I think he should reach out to. I have suggested my PC and my psychiatrist.
Well, this world is not my home and most definitely not my forever home. Having a lower life expectancy from a drama of medical errors is disappointing, but not terribly for I don't feel like I really fit in here much anymore and my ride or die friend says they feel the same way as well. In that regard, I do not consider us unique.
Not presently counting mental illness given my psychiatrist's view she's holding in tension to see how I do, my comorbidities with narcolepsy are obesity, high cholesterol, sleep apnea, hypogonadism, diabetes, DDD, DISH back disease and vascular parkinsonism.
We, like many others, have relatives who have yet to accept that each of our health conditions carry with them long term incurable side effects that are beyond our control when they kick in which we repeatedly have to explain which is exhausting.
My wife is getting treated for her spine problems but is non-compliant in various ways. My Parkinson's/Parkinsonism's PT response to this has been, "you must take care of you."
THIS:
Imagine someone who loves you so much, they make you love yourself.
. Advise
. Decision is made
. Consequesces
Situatuon: Accidents became more frequent for my LO when out.
Solutions were discussed but my LO refused the idea to wear more absorbant undergarments.
I Advised: Please wear pullups when out with me, so we have a more pleasant time & less awkward cleanups.
Decision was made: LO refused.
Consequence: I refused transport in my car.
Same could be applied at home.
Advise about the pullup or absorbant wrap around style of pants. Have a supply easily accessable in bedroom or bathroom, wherever gets dressed.
Leave the decision to the wearer.
Bob, if you return from a day out & Mother is wet & uncomfortable, well that was her decision.
She is free to change her mind & decide differently for the next time.
I had already noted she refuses to go the adult diaper route. She adamant about that. She doesn't want a UTI and risk getting sepsis.
If anything happens and she finds herself without me, it won't be because I didn't put extra support in place. It'll be because SHE wouldn't put extra support in place. The ball's in her court.
Along with being self-absorbed, she lacks self-awareness. She fails to realize that without taking the extra steps in various places, it's gonna be a massive challenge on my end after she passes. You can also make a case for her becoming institutionalized since she's been stuck in the house for so long.
Please fight for more.
You most definitely as Burnt noted in another thread I believe need a strong counselor who will help you with behavior modification to find yourself, see your own worth again, problem solve and take the necessary steps via homework assignments (like this one day away that she has "granted" you) to reclaim your life. And it will take many steps. Doesn't matter what childhood issues led you here, rather what you can do to make changes to this pattern of behavior which truly is resulting in your loss of life basically.
Of course your mom is worried about what will happen to her if you are gone. You should worry too. When you have a heart attack from this stress she will be alone at the mercy of the state because you've put no other supports in place.
Why on earth are you putting up with this?
It's been 8 years and 1 month since I had a vacation. At the time, my mom was 2/3rds of the way through her chemo treatments, less than a month away from trading her walker for a wheelchair, and 2 months away from starting radiation and herceptin treatments.
She has given me the green light for a day trip. However, she wants someone to go with me and I found a couple of friends to tag along. She's scared if I go alone, something could happen to me and if something happens, she's nursing home bound. She's long since forgotten I drove 3 hours to my college town by myself for 4 years.
I'm really starting to wonder if she's showing early signs of dementia or Alzheimer's or had a mini-stroke at some point that was small enough to go unnoticed and did just enough to effect her, but not to the fullest extent.
You have decisions to make as regards your future. That's not your mom's to decide - that's up to you, You decide if you go out and about more, that's not up to your mom. If she has panic attacks then she needs meds and /or counselling.
Your mom is using her illnesses to control you and keep you tied to her apron strings. She is not going to change as she is getting what she wants. You are the one who has to change if you want your life to be different/better.
She will have an answer for every solution you find because she wants things to stay as they are. She will get angry if her applecart is upset, but that's OK. Her feelings - anger or tears or whatever are hers to deal with.
Your feelings are yours to deal with. Let them guide you to a healthier path in life, where you are not tied to your mother and where your needs are being met. Your mother wants your tied to her side but that is not a need it's a want, She could be cared for by others.
Healthy relationships have give and take, ebb and flow, concern of each partner for the other, Your mother IS totally self absorbed. She has no concern for your welfare. And you are enabling that by catering to her whims. It's not healthy for you or for her.
Keep getting support, but don't expect a change in your mother's attitude to be the solution.
narcs be like:
"Stop whatever you're doing and finish this thing I don't want to do."
narcs be like:
"I'm going to miss having you around to blame."
"Why did the narcissist cross the road?
He thought it was a boundary."
If you do, give her some phone numbers, don’t answer your phone, and walk away. Stop your slavery being her best choice.
I don’t think after 7 years , PT will help her . I would think her muscles have atrophied beyond chance of recovery.
The rest of the day and early that night, she was telling me she doesn't want to be in the nursing home, has panic attacks when I run errands and that I don't understand that aspect and kept insisting she's better. She wants to be told "attagirl," but there have been few of those moments. She felt discouraged when she told her she wasn't getting better. I told her she technically has the money for the nursing home, but she continues to put off getting my grandmother's bank accounts in order.
I pitched the adult diaper idea to her and that it would allow me to be out and about a little more often and it would allow trusted friends to come and help out and she didn't want to do it. She shot it down even further later that night by noting adult diapers can cause people to have UTIs and that it was a UTI that lead to the death of a colleague of hers. Her motto has always been that if you haven't battled cancer, stay out of it and don't give her cancer-related advice. I told her that you can make an exception for doctors and physical therapists and she responded by saying her former primary doctor didn't find the breast cancer via the blood work he did for 3 straight years.
I told the family friend everything that happened after she left as it happened and she noted that when she told my mom that I'm not okay, it went over my mom's head and said my mom was self-absorbed. I told her yesterday not to contact my mom for a short time to spare her from my mom's wrath. I didn't tell her that my mom was wanting to choke her yesterday.
I'm now starting to accept the notion that I'm never gonna get married or have kids, unless my mom were to pass away a lot sooner than expected instead of roughly 25 years from now as I'm predicting.
She's more turned off by solutions to her lingering problems than her lingering problems. Talk about a head case.
"Life has its ups and downs.
We call them squats."
"Don't mind me, I'm waiting for a narcissist to change and apologize and validate the pain they caused."
my goals for today:
"Today’s goals: Coffee and kindness. Maybe two coffees and then kindness."
🙂
“Do you recharge yourself as much as you recharge your phone?”
Today’s a good day to start making a difference in your own life.
🥰 today’s words of wisdom...
”Stop hurting yourself
because you're angry at someone else."