The Caregiver & Dysfunctional Families: How are you doing?

Ali,

Very sorry to hear about your dad’s leukemia and COPD.

Ali, so sorry to hear about your dad.

My dad went to the hospital and is now back in IL with HHAs ordered by docs and is on hospice. He has leukemia (a slow-growing version), but his biggest issue is advanced COPD. He can't walk at all without getting short of breath. I never could get him to use the prescribed inhalers. He insists they don't work. My mother joked with me by text, "He will use the inhalers now." She knows I tried and tried to get him to use them, even after my hands-on days were over.

I don't have the mental energy to get too far into any feelings I have about this news. I have school projects and papers lined up straight through the next few weeks.

I told my mom to call me if there's a crisis, and I can come down. I'll call my dad tomorrow and give him a friendly pep talk.

I'm 90% certain I'm going to take a leave of absence from my school program after this term ends. I have questions that need answers; then, I'll come back (either to this uni or a different one) with an improved aim toward long-term goals.

Thanks so much for the support. It's great how just putting things out in writing here and getting feedback helps me gain some clarity on what the issue is. I journal some these days, but it's mostly a gratitude/carpe diem kind of journal. :) So... thanks. :) Always. 💙

Yoda,

So glad that your scan was negative. Hoping for good results with your upcoming tests.

Wishing you and your family all the best.

Ali,

Sorry, I posted twice.

My wife and I are up here with her sister-in-law. Her husband died last February. I think she has some brain fog at 69 for she accidently calls me by her husband's first name. My wife's health is not doing all that great either.

Ali,

Thanks! My narcolepsy test was postponed until the end of March because they overbooked me for testing when I was scheduled for the end of this month. Also, those anti-psychotics caused two permanent side effects which are not pleasant to live with.

The good news is that my Catscan was negative. I see a PT next week for a balance evaluation so that they will know how to help me.

Yes! Ali! Upward and onward. All the best to you always.

Sharyn I pray you are well. Stay strong.

Much love to you all.
Rays of light healing to us all

Golden, you gave me things to think about with regard to my choices and a very empowering pep talk about pursuing one's passions wherever they lead them. Thank you. I needed that.

My sinus infections seem to onset pretty reliably in the Fall, correlating with indoor heat being turned on for the first time. I'm inclined to think the dryness and the old dust circulating around is what's causing them, but I may have other susceptibilities. Thanks for putting dietary considerations on my radar. These things can change, too, and we develop new allergies we didn't have before. The sinus issues became a constant problem during "the mold years" and have bothered me since.

Duck, that's a wise observation. Thank you.

I'm going to sit with my feelings about quitting for a bit. I have more than enough work to keep busy for now.

I must find time to make local contacts and see who is practicing BG in my city or surrounding areas. There may be an acceptable option to gain supervision from someone local who is passionate and dedicated to BG practice. I have to explore that first; they may have specialized input for me. This seems like a good starter plan for figuring out what I need to figure out. lol

The increased clarity that's come out of this questioning, for now, is that I need specialists in this practice to give me input. The "regular" ABA professors, practitioners, and classmates can't help me here.

Onward and upward. :)

Wishing you all the best as you plan for your future Ali.

Ali stay focused the enemy stays busy

You are all in my heart and prayers

so-so

Ali,

I hope you feel better soon. It’s miserable to feel funky.

(((((Ali)))) Sorry about the illness and other issues. My sinus problems are related to allergies I had them for years and years before I discovered that. The way I identified the allergens was by elimination eating. Two weeks without any gluten -(wheat, barley, oats and rye). Sure made a difference and I have proceeded from there. Then later I tried two weeks without dairy and that made a big difference too. Now I eat wheat and dairy free and have to be very careful that foods are certified gluten and dairy free. If there is any contamination, which happens often in factories, I get very stuffy and have major sinus and head aches. Found I am allergic to oats too - even gluten free oats. Darn!!!!

As regards your future education, taking time to let your ideas and feelings settle is a good thing. You have accomplished so much in a short time. It's amazing to look back at the time when you were caregiving your dad and really didn't have much in the way of plans for your future and then look at where you are now. Awesome!!!

As regards going 1/2 way around the globe for your education - no problem. I started in McGill as an undergrad. Then went to Scotland and finished my first degree. The back to McGill for grad work, which didn't work out, then later to Alberta to finish my masters. Other than having a passion for my area of study, I found the most important thing was a supportive supervisor. I didn't have that at McGill, I did have that at U of A.

"I've found a whole new world and career." Don't limit yourself, Ali. The world is your oyster. Good old Shakespeare got lots of things right. You will never have a better time than you have now to explore and follow your dreams. I'm full of cliches tonight but I think they are apt.

A more prestigious program will put you in contact with people who are well recognized in their field. That doesn't hurt.

Look after your health. That's a high priority. I know you can grind through, but I think you owe it to yourself to consider other possibilities since doubt about your current path has entered the equation.

I have confidence that you will work it out! Keep us updated.

Appreciate you always, Golden.

Need, thank you for the kind words.

I'm disappointed to feel this unsure about continuing because I was dead set on getting through this program.... which I CAN DO just by "grinding it out" over the next 8-12 months. And now I have doubts that it's the correct/optimal avenue for me. Maybe sleeping on it over the next few weeks will help my brain settle on one plan or another.

I've been under a lot of extra stress lately from illness and other problems. That always adds extra confusion to my brain.

Sharyn, I know it's not the same as being there, but maybe consider asking someone in your family to livestream the service for families who can't attend. I'm sorry. I do think your plans for your sis's ashes are special and a lovely way to honor and remember her.

Are you certain you can't attend? There are discount travel sites; maybe you can hunt around and find something that fits your budget. ?

Ali - I just lost a long post to you. Need to regroup before I post again.

Yoda, I sympathize with the misdiagnosis. I've had a few of those in my lifetime. I don't subscribe to the theories of mental illness categories all that much after my experiences with different dx and different meds. I get there are conditions/symptoms that exist but they are too abstract at present for universal practical use... something like that.

Sometimes, it seems to me like present-day psychiatry is throwing things at the wall to see what sticks and doing this with powerful chemicals and unsuspecting clients. Maybe advances in neuroscience will help get the field more accountable.

It's a real shame that you would be given antipsychotic medication if your issue is indeed narcolepsy. I'm glad you're getting a brain scan. Maybe consider getting an assessment from a neuropsychologist, too. I plan to see one when I have time and pay for it out of pocket if necessary because I want better information about my symptoms/behaviors. Going to psychiatrists hasn't helped me.

sharyn (((((hugs))))) You sure are getting it from here and there. In your position, I would feel slighted. Your grand niece's wants have been put ahead of your needs so to speak. But at the same time causing conflict is not what you want at this time. Your plans for your sis's ashes are great. Grieving goes in past the funeral and a personal time with memories of the LO can be very healing.

I;m sorry about the ongoing issues with food and finances with your dh. Considering that you have had one major loss it is not unusual for others to come forward in your mind. Please do what is good for you. You can't change him. I know it is hard seeing a loved one do things that are not good for them.

Prayers for peace for you and healing.

Ali,

You’ll figure out what is best for you personally. As always. I wish you well.

It seems like the one ‘constant’ in life is change.

You are correct in saying that we can have the best plans laid out and then things sometimes change and move in a different direction.

Sharyn, that's a nice event you're planning with your sis's ashes. And the necklace. Sorry you and hubs aren't getting along. It kind of sounds to me like you get taken for granted in your marriage. But after so long, people grow apart, too, I guess. Any which way, I'm sorry. You deserve to be appreciated and to have happiness in your home.

...

I'm thinking about quitting my MS in applied behavior analysis.

Not permanently quitting, just stopping at the end of this term to evaluate some things, including considering whether another uni's program might be a better fit for my education goals.

I'm about halfway through. It's hard to believe. I started this education journey in late 2020 with just a vague idea that I wanted to go into a "helping" profession, and I've found a whole new world and career.

This should be the worst problem I ever have, really, is considering whether my current education platform is sufficient or whether I need to apply to a more "prestigious" program for my major. (And a place with a practicum would be nice, doubly so if they offer gerontology aspects in any part of their program. There's a specialized behavioral gerontology practicum school in Iceland, but it seems a little unrealistic to move across the globe just for school. The program is in English, though! lol 🙃)

I just wanted to share. I've been under a lot of stress. Life never stops, you know..?

I'm going to doc this week for a 2nd round of antibiotics to hopefully finally kill off a sinus infection I've had for months. I'm going to ask for basic painkillers while I'm there, maybe something like hydrocodone, because antibiotics give me migraines (this has happened before with different ones), and Tylenol is completely worthless for them.

I like it when problems have resolutions. It drives me a little mad when problems just go in circles, and you chase after them, but you're going nowhere. That's how I've felt lately with different things.

It will all even out.

*Also... I would quit school for now so I could go back to working as many shifts as I could because I'm low on funds and not comfortable going into a lot of debt for school. There's high demand for behavior analysts, and salaries are good, but... still. I think I'm going to take a break, save up some funds, apply to some other programs, and see what response I get.

But I'm posting this here as a vent/share because I'M JUST NOT SURE THIS IS THE RIGHT DECISION TO QUIT. I could just plow through as I have been and finish the degree.

I don't know what to do. I have a few weeks to make a decision about whether to register for the next term or not.

Sharyn,

I understand how you feel. I would feel the same way. I know that you don’t want to cause the family any trouble during this period of mourning.

It’s sad that you can’t be there. I’m sorry. They have to do what is best for them and you have to do what’s best for you.

I want to share something that my grandmother said ever since I was a little girl. She said, “Give me flowers when I am living. I want to be able to see, smell and enjoy them.” She truly didn’t care about what happened after she died. I feel the same way as my grandmother did.

My grandfather was an avid gardener and he grew the most beautiful roses for my grandmother. She loved her pretty garden.

Your sister knew that you loved her.

A service is more for the living than it is for the deceased. It’s closure, a day of remembrance and mourning with others, a celebration of their lives, a time to pray, etc. You may not be able to be there in person but have no doubt that you will be there in spirit for her.

Sending many hugs your way, Sharyn. It’s hard to lose siblings. I have lost two of mine. So many memories are in our minds and hearts.

Everyone, I am the only one disappointed because I live in Idaho. My great niece lives in Florida. She loves to travel. May won’t work because she is going to Norway in May. My great niece was close to my sister when she lived in California and under the age of 5. I know what my relationship is/was with my sister and that won’t change whether it’s March or June.

I will be getting a necksce with my sisters ashes in it, I will go up in the Sierra Nevadas where my sis wants some of he ashes spread and put the ashes in my necklace by myself in June. It will be a time between me and my sister. It still hurts being slighted. Life’ is what life is.

I can’t drive in March because of the snow between idsho and going over Donner Pass. We have 17 inches in our yard now which is much more than we have received in the 7; years years we have lived her. I I guess I will suck it up so it’s not about me. My neice, her daughter and my nieces son can go in March and have a family trip. I don’t want to be the problem relative even though I feel slighted.

Sharyn,

I know that you’re disappointed to hear this news.

What does the rest of the family want? What was the original date scheduled for the service? Why does the niece want it to coincide with her RV trip?

Your sister’s service shouldn’t be an afterthought or a side trip. It’s a day set aside specifically to remember her.

Are you the only one who is disappointed or are others bothered by this schedule too?

Is it possible for the family to voice their concerns and possibly take a vote and then go with majority rules?

You’re not selfish. You want to be there. I hope that your family will understand this. It’s a tough situation to be in.

I don't think you are being selfish Sharyn. How close to your sister was this niece? Were you closer? Not that it's a contest but still........

If she just wants it then so it fits in with her RV trip then that's kind of selfish especially if it's inconvenient to others who would like to attend but can't due to finances etc.

Those are my thoughts on this.

Hey, everyone, I’m nut sure how to feel. My great niece who is my sisters granddaughter wants my sis’s graveside service in March so she can combine it into a travel trip renting sn RV. I can’t go to California in March becauce I’d have to fly, rent a car p,us a hotel. I’d rather do it later so I can drive out. Rent just a hotel. I don’t have the money to go out in March with paying all those expenses. I realize my niece has to to do what is best for her family, yet Imguess I’m selfish as a sister, and feel I’ve been slapped in the face.
i won’t be able to go. How do you all feel about this. Be honest.

Sharyn, I'm sorry you are going through all that. May God shine his loving grace upon you.

I’m so sorry, Sharyn. You deserve better from your husband.

I am like you are. If I am upset I can’t eat either. Just continue to buy what you like and don’t worry about what your husband eats.

Why should he expect you to compromise if he isn’t willing to do the same.

I hope that you will somehow find peace in this situation.

Since losing my sister I feel very along. I’m not posting this attention. My sis in law lost her S/o after 3o years together. I talk with my niece regularly. I feel guilt in making the decision to put my sis on comfort care and so does my niece. We both know in our hearts we did everything possibly for her but we search our brains to understand if there was something more

more problems with my hubs. We can’t afford to divorce after almost 47 years of marriage. We don’t get along plus money is a big ussuse. I have found out that he apparently does not like anything I cook. I, tired of eating canned chili and hot dogs. We are splitting up on food issues. He cooks for himself and I buy my own food snd cook it. I think we BOTH will be surprised I tired of giving up food I like that he won’t eat. May die as taught wrong, I ever that that being married meant I had to give up everything I enjoy to accommodate him. He believes that is what marriage is about.

my appetite is very small since losing my sister snd I’ve lost about 12 lb. I know that zGod will give me the peace transends all understanding.

May we All have a healthy new year.

SharynMMarie,

Thanks!

When I told my dentist today about my upcoming narcolepsy test, she said it may be related to my teeth grinding which became 24 hours a day now and knocked off the crown off of my tooth twice.

Today, I learned online that weight gain and narcolepsy are related because the poor sleep you experience leads to a lower metabolism which means you gain weight without eating more.

The reason that I'm not commenting anymore is that frankly, I've run out of things to say. I have pulled out of school and now live one day at a time. I don't even have any plans in mind for Valentine's. My sister-in-law told me over Christmas that she's noticed that I'm no longer as talkative or extroverted as I once was. True.