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Tawheed1 Asked August 2022

Guilt, boundaries and the future. Any advice?

Hello, around 4 months ago, my 80yo fathers mental health took a turn for the worse. Anxiety meds just stopped working, adjustments to meds/changing them didnt help, was hospitalized for 2 weeks and heavily medicated with haldol,depakote and others due to fits of hysteria. (Never had these before)Weaned off of the antipsychotics however, anxiety is still untreated. Has started having memory lapses, asking questions that dont make sense when he should know the answers to them. Sibling, her friend &i were able to convince him to bring in care workers for both him and our mother who has moderate dementia and cant be left alone or take care of herself for many years now. He is unsatisfied with the care workers. (doesnt like their personalities and gets upset at their idiosyncrasies/complains about them) I dont know how much of this is just him being him or if theres really something to be concerned about. Hes paying good money for their services so says he should at least have someone who he likes and gets along with. I sympathize with this, however, i dont know how reasonable an expectation it is to find someone who he likes. I dont have the strength or will power left to "agency hop" as none of the finances are in my control so EVERYTHING has to meet my dads approval & getting anything done with him in the middle of it is extremely difficult. I dont have the life force left to do this and my sister is not fit for this type of duty. Shes a grunt work type person and doesnt have the skill or life experience to deal with hiring care agencies and everything that entails. I manage all their bills, medical appts, medications, social workers, drs, etc and am with them for 4 days a week.. burned out now due to the unmanaged anxiety issue as his episodes suck me in and cause me my own anxiety problems like racing heart, stomach nausea, migraines and now a twitching eye even when im 25 miles away on my "days off". I have recently resorted to not answering calls or texts from them when im away, but i feel guilty about this.


 


Yesterday, he was taken to the ER for his anxiety and the dr told my sister & her friend that he needs to be in a home. (4th medical person to say this) For the last 3 to 4 years, our dad has said if we put him in a home, he will die in 6 months. I dont want to have to put him in a home but things are getting pretty unmanageable. He has severe panic attacks and wants people to drive him around for HOURS on end, 4-12 hours a ride) Wakes us up in the middle of the night or super early in the morning after we have been up late with them to take him for rides and has no regard for our welfare when hes having an attack. Asks for me to come back home after 1 night of being back with my husband after taking care of my parents for my 4 days.


 


I dont know what to do anymore. I have severe guilt over the reality that a home may be in his very near future. I feel guilty hes not happy with his care worker(my dad is loud,cant hear well,&is easily angered and demanding of the care workers)


 


I have established my boundaries with my dad as far as not taking him driving for more than 2 hours a day as its very difficult to just drive drive drive. Besides that, i have chores to do, fixed prayer times, have to eat and other life necessities that wont get done if im driving for 8 hours a day. My mother shouldnt have to be stuck in a vehicle for all those hours either. The thing is, i feel guilty about establishing these boundaries, especially when he comes almost crying to me to take him out again, 10 minutes after we arrive home.


 


I don't know how to proceed forward. He he is in denial about his driving which currently his licenses is suspended but he is fighting to get it back..at doctors visits, he doesn't want us telling the doctor the truth about how bad his situation is.. he says not to make him look loony, but they need to know the truth. He definetly believes we are turning on him and i cant get passed the feeling that hes right.

Tawheed1 Sep 2022
Thank you all for responding here, I have read all of your posts multiple times and on different days and have taken screenshots of the pertinent information you have posted and even some points that were just reminders to guide me to the right path in how I deal with my own challenges.

Yes the road will be rough, especially tackling the personal guilt that is misplaced in a lot of ways...it's never an easy transition from having healthy strong parents to, in some of our cases, their very suddenly declining health.

Thank you all again for your time, I hope you all see this message ♥️

cxmoody Aug 2022
The first thing that many of us learned after we joined this forum is that guilt is for people who have done things that are WRONG.

What you are doing, if you save yourself, is doing RIGHT. Right for you, and right for your husband, and especially, for your mental and physical health.

I’ve written many times here, about the similarities between my mother’s brain, and my toddler grandson’s brain.

GS would LOVE me to throw him up in the air, over and over. For hours. But, it’s not safe for my physical health. And, neither is it safe for my mental health.

I have responsibilities to take care of, and sometimes, those include making safe decisions for both him and me.

My grandson’s brain is just forming. He can’t make good decisions. He needs adults around him making decisions for him.

Your father wants someone to drive him around for hours, for example. But, that’s not safe for your mind, or your body. You have other responsibilities that are suffering. Your body is suffering.

Your Dad’s brain is deteriorating. He can’t make good decisions. He needs adults around him making decisions for him.

It’s time to stop letting your Dad act like a toddler. It’s not good, for either of you.

Best wishes.

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Grandma1954 Aug 2022
Good possibility that he does not "like" the caregivers is that his anxiety is hindering him and that he would probably not "like" anyone other than you or other family member or someone that he is comfortable with.
It sounds like since mom needs care as well if you can place them both at the same time, and if possible or if it would be good for them place them in the same facility, same room so that he can still "care" for her as much as he can.
You can tell him that it is for mom until "he is better" and can care for her himself. Tell him he needs to get better before he an care for her by himself again.
Tell him what "we" tell ALL caregivers, he has to take care of himself first.
And to do that he need to be honest with his doctors. (If you are on his medical forms to give/get information YOU can send a note to the doctor, use the electronic portal if you have one set up.)

freqflyer Aug 2022
Tawheed1, it's a case where it now takes a village to take care of your Dad. I know your Dad said he would die in 6 months if he was placed. Please note there is up to a 40% chance that you or your Mom would die or ruin one's health trying to take care of him. Those are not good odds. Then what?

My own Mom didn't like any of the caregivers that came in trying to take care of her. It was so embarrassing whenever she demanded a caregiver to leave the house. Dad, on the other hand, liked having the caregivers around. I had to wait for a serious illness or a major fall to get my Mom in a care facility.

As for driving Dad all over hill and dale, that has to stop right now. You don't have the time to waste being on the highway, and the more you are on the road, higher the chances of being in an accident. Just make up a "therapeutic fib" as to why you can no longer drive him.

Fawnby Aug 2022
Realise that he doesn’t know what he’s talking about. Furthermore, a home is just that - a home. It’s where people live. The goal there is to keep people alive, not kill them. He’s wacko but you don’t have to be. I’m sure you and the doctors will find him a good place where he can be cared for by competent people, and you can resume your life as you should.

babsjvd Aug 2022
Time to follow the dr s.. don’t be concerned with your dads words of dying in 6 months.. I would be more concerned a serious event could happen in 6 months ! Your fathers brain is broken.

start looking towards Medicaid. Make sure all your ducks are in a row. DNR, living will, POD (payable on death) …
durable POA, medical POA…
find a memory care that takes self pay for a period and allows transition to Medicaid. call your county office for aged and disabilities … they can give you guidance and my office would make the application to Medicaid when it was time. 

Google care advisors, find someone local who will guide you and meet you for tours at facilities. They are similar to a realtor, but get paid by facility. They know what’s available, cost , your needs, etc.. invaluable, I placed 3 times with one. Check for care patrol , it’s a franchise , maybe one in your area??

my mom didn’t want in home care and played all kinds of games…. I did not relent.

stop going for the 2 hour car rides… that just not sustainable…

there comes a time when the child becomes the adult as the parent ages… you are not turning on him .. don’t let him guilt you. If he should not be driving , have the conversation, take away the keys.

MargaretMcKen Aug 2022
“Dad has said if we put him in a home, he will die in 6 months”. That’s a big threat that disables you. It’s manipulation. It’s also RUBBISH. None of us know when we are going to die. He is more likely to die if he grabs the car keys and kills himself on the road. He could also kill other people, and at present he could kill YOU. You are not in great shape now, and it’s getting worse. What happens to him if you drop dead with a heart attack?

You all need him to go into care. If you can accept that, you can get a different set of answers to your problem.

At present you are focused on changing HIM, and it’s not going to happen. You can only change yourself.

Daughterof1930 Aug 2022
Your dad’s health and mental health issues are far beyond your abilities and skill set, not your fault, not anything you can fix or make better. Please realize this! All this guilt is totally misplaced, you’ve done nothing wrong, you’re simply sad it can’t be better. It’s normal to be frustrated that you can’t change a situation, but all your doing is messing up your life, not helping his. Back out of this, let the doctors intervene as needed, let dad see his need for professional help, what your mother chooses to do or not do is her choice, stay out of it. Time to save your sanity and we’ll being. It’s not that you won’t care, it’s that you understand your human limitations. I wish you peace

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