How to move on with my life
I've posted many times on this website and I've been grateful for all the support I've received. I'm posting here as my final issue because I am in a rock bottom with my own physical and mental health.
I live at home with my 75-year-old father who had an ischemic stroke in January 2023. During his hospital stay, he developed delirium. Now that he's home, he's still very confused about understanding simple things and also confused with what he does. He has some new incontinence issues and refuses to bathe which is both embarrassing and frustrating. He has no other family than me and only 1 friend who isn't much of a friend either.
I feel like he cannot be left alone or I get so worried that I become sick to my stomach. I cannot leave the house for two hours to go grocery shopping without feeling like I need to rush back home. Even if I am super quick, I come back home to an angry and confused father who thought I abandoned him and did not inform him of where I was going, even though I always do inform him. I cannot leave him a note either because the stroke caused vision loss in one eye and really poor vision in the other eye.
I feel terrible and guilty for saying that I am entirely uncomfortable around him. I get very shaky and nervous when I hear him walking around because I don't know what he's doing. I get nervous when he approaches me because he usually makes comments or asks questions that don't make sense and I don't know how to respond to him. All he does nowadays is watch tv all day long and he also forgot how to use the remote control. Our TV provider has a law that forces the TV to go into standby mode if no activity was detected for 4 hours. My father does not know how to avoid that, nor does he know how to bring the TV back once it goes on standby, so I set an alarm for every 4 hours of the day AND night to use the app on my phone to reset the TV for him. Needless to say, I'm exhausted now.
I worry that if I ever need to go out for more than 4 hours and he's left without a TV, he will get bored and start doing something else. Not knowing what that "something else" could be makes me very nervous.
My father has poor health. Other than his recent ischemic stroke, he also had two heart attacks in the past, has coronary artery disease, chronic obstructive pulmonary disease, chronic kidney disease, hypertension, ischemic cardiomyopathy, peripheral vascular disease, dyslipidemia, has smoked 2+ packs of cigarettes every day for more than 60 years and only quit smoking since his stroke (because I forced him to do so by refusing to buy cigarettes for him).
He is extremely prideful and independent. Unfortunately, getting outside community help (in-home care, nurses, PSWs, etc.) is not an option right now because he would probably disown me. I cannot find the strength to go against his wish regarding that. He wants to be left alone, basically. He wants little to no help from me, and especially not from strangers.
My mental health has been awful. I've cried more in the last 2 months than I have in my entire life. I have never been so tense, scared and anxious. I cannot sleep properly, not only because I wake up every 4 hours, but because I'm too stressed to have a deep sleep. I've lost my appetite but I force myself to eat which makes me feel nauseous and disgusting in the end. I've cancelled plans with my best friend often recently, which I never do, only because I don't have an interest to be around others anymore. I'm currently a college student, so you can imagine how difficult it is to concentrate on my work.
I'm absolutely depressed and I cannot figure out how to move on with my life without feeling worried and guilty about my father. I don't know if he's got dementia now or is heading that way, but there are definitely symptoms and Alzheimer's runs in his side of the family anyway.
I was always a very happy and optimistic person. I was happy everyday no matter what was going on in my life. It takes a whole lot to bring my spirits down and now, to my surprise, I've lost that happiness.
I know everyone will comment and tell me that I need to think of myself (agreed) and to get outside help if I need to. I know I would feel bad if that was forced on my father and he would be upset with me. I've always wanted to please him and avoid making him unhappy because I used to be a daddy's girl. Now he's a different man and I only feel uncomfortable and scared when I'm around him, so I avoid him, unfortunately.
Any advice or support would be appreciated. They say stroke recovery is a long journey. They don't really say it's a long journey for caregivers too.
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Call your local Aging and Disability Resource Center. They can provide help. They have staff who are accustomed to resistant patients.
It sounds like your mental exhaustion will lead you to not be able to care for him. Tell him this. Then, call in for help. Let the staff speak to him on your behalf. I feel for you. Taking care of you first will help both of you, so you do not burn out.
Good morning @greatwhitenorthgal I completely understand where you are coming from, as I take care of my 84 year old friend who now has dementia, and naturally our friendship has changed drastically. I am now in this parent/caregiver position that I am not feeling especially happy about, probably because I have the patience of an ant. But because of her kindness and generosity over the past 10 years, I feel a sense of obligation to help her even at the expense of my own well being.
I have found both music and art to be helpful to me, as well as walking. Sometimes one has to step outside of their reality to escape, and I am doing this more often. I have my own health issues to deal with, and know that if I can't help myself then I am no use to her. I will not tell you to get outside help, although that has been somewhat helpful to me. Is there anything you enjoy doing, like writing, music or art? Check out this quote I found today on themargolian, a very good site with many uplifting stories and deep inspiration. 'There are more things … likely to frighten us than there are to crush us; we suffer more often in imagination than in reality." This is a quote from Seneca, and it caught my eye today.
It sounds like you are afraid to go against your father's wishes. But right now, you have no other choice. Anything that happens now, and any way that things go, are going to displease him no matter what, so you have to sort of take that out of your calculations. You both need outside help. At this point, you are the adult in the situation, and you need to make those difficult decisions, whether it pleases him or not, because it is in his best interest.
The people in this line of work are very familiar with the kinds of situations you are describing. Your observation that your father has become a different person is spot-on and it happens to other people with these conditions, too, more than you know. It will come as no surprise to staff at agencies in your area to hear about what's been going on. You do not need to handle this all alone. Please reach out for some help!
That sleep deprivation you are experiencing can catch up with you and cause some very serious mental health problems– I should know, as I've been there.
Your dad (the person your dad was) would not want you to have to go through this. Even if he hates it and even if he says he hates you (like a teenager or a toddler would), you need to get all the help you can. Is there an extra bedroom in the home? It may sound far fetched, but if someone else were living there, for free or reduced rent in exchange for helping with your father's care, that may help give you some peace of mind. A classmate? A retired person? Put an advertisement out locally? Where I live, housing is hard to find and expensive, so it wouldn't be very hard to find someone to do this, but where you are things may be different. And you must get past giving so much weight to your dad's opposition to this kind of thing. He is not in his right mind and needs you to make these decisions for him; that's what the POA is for.
Unfortunately, we are renting this house and the only extra bedroom now is really a storage room for our lifelong memories. I also don't know how I would feel about a stranger living in the house as well as trusting one with my frail father's health. I know there are professionals trained to do these things and I have no idea how much they cost, but I can't imagine that it's cheap!
The stroke was completely unpredicted, of course. So everything that is happening now and the stuff I need to plan for feels like a ton of bricks just fell on top of me. It's confusing, especially not knowing where to start or who to turn to. I've reached out to a local community and health service organization explaining the situation and I will see what they respond with.
I'm going to be blunt here, please forgive me: the stuff in that bedroom is special, but it is not worth more than your sanity. It can be parceled out to other rooms and pushed into corners and some of it can even stay in there. I understand your reluctance to have a stranger living there; that's always a stressful change. But maybe that stress would be the lesser of two evils as things are most likely only going to get more difficult with your dad. Ditto for whatever it may cost to get some paid help, if it comes down to that (if whatever free services may be available aren't enough). I hope you can find some help locally. I feel sad that you are mortgaging your youth trying to take on this responsibility.