How to manage in a world that doesn't understand?

Follow
Share

I'm 21 years old, "full time" caregiver for my father (turned 60 december 3rd) who was diagnosed at around 56 with dementia. Mid June we took him to the hospital after he woke up one morning thinking people were out to get him and then later that same day getting stuck outside, lost in our backyard by himself until a neighbour found him. Since the end of June I have been staying at home with him all day taking care of him. If I had to classify what stage of dementia he is in I would say stage 6 with some parts of stage 7. We have caregivers coming in Monday-Friday from 10am-12pm that give me some respite, however I'm not always in the mood to leave the house and he usually doesn't get along with the caregivers that well.

My question really comes down to the people around me besides immediate family not quite understanding what it's like to be a caregiver for a parent.

I'm not working, and I decided that I would not go to school this year so I could take care of him at home, otherwise he would have been going into an assisted living home. My closest friends work long work hour jobs that have good pay (for a job with no university education required). All they care about is making money, gaming and going out to eat and gamble at casinos. For the most part, I don't take interest in any of these things, nor do I have the time to participate. I spend a decent amount of time gaming when I get the chance but since I decided I would stay at home to take care of my dad I feel like I've lost touch with my friends and we have different interests.

My friends don't understand what it's like to be a caregiver, and I don't blame them for that. But I'm stuck at a point where they don't understand how I'm changing, or how I'm busy and not able to go out and do normal things that teenagers my age are doing.

I'm starting to feel isolated from both my friends and the outside world. My friends really aren't there to talk to because they don't understand me and the things that used to keep us together have since disappeared.

This question has been closed for answers. Ask a New Question.
15

Answers

Show:
Oh sweetheart. I can tell you that your dad would not want you skipping out on school to care for him. I am 54 - and I had to give up caring for my dad this week at home because it became so overwhelming - and I too got increasingly isolated - and I have a lifetime of friends (many who are in the same stage). This is too much for you to take on. My son's fiancee (22) took care of her mother through Stage 4 lung cancer at home, and it shattered her - and wore out both her, her sister and her aunt. It's too much. She also took a semester off. But you have to know that's not what a parent would want. I don't know what might be stopping you from AL - funding, guilt, etc. but revisit this. You have but one life to live - and I know if you love your dad, and your dad loves you, this is not the plan he has for you. With hugs, D
Helpful Answer (9)
Report

I had a similar situation many years ago when I was in my sophomore year of college. My mother would have these "espisodes" and she'd lock herself in her room for months at a time. We all just kind of lived around her behaviors. When I was 18, she got really bad, and became kind of mean and combative. My dad asked me to cut back on my hours at school, and quit my job and basically "take care of the family". 3 younger sibs, one only 9 years old. She was acting out in school, so I had to deal with that. Also, raising 2 teenage brothers!

Looking back, I realize this was sick and wrong. My TRUE friends understood and stood by me, the "party friends" dropped me like a hot potato. This lasted off and on for a year. Mother should have been institutionalized, but they didn't DO that back in '74.

And of story, I didn't get to graduate by the time I got married, I resented the heck out of my mother for being so incapable--and a little bit my dad for just foisting this mess on to me.

I would NEVER, and I mean NEVER ask this of my kids. Your dad wouldn't want you to put your life on hold at this young age! I hope you have some advocates who can help you get dad the care he needs and you can move on with your life.
Helpful Answer (9)
Report

You say: "I'm not working, and I decided that I would not go to school this year so I could take care of him at home, otherwise he would have been going into an assisted living home."

He would have been going into an assisted living home. And?

Your screwing up your studies will not cure your father's dementia. It will just mean that your life as well as his is derailed.

Call your college and see what they can do to help. I can't believe that your father would want this situation.
Helpful Answer (8)
Report

You experience of isolation happens to older caregivers as well. You need to get him on Medicaid and find some services at home or in a NH. You cannot provide 24 hour care for him as he will get worse.
Helpful Answer (7)
Report

There’s no age or stage in life when caregiving full time for a loved one is easy or “convenient”, as it really basically means letting go of much of your own life. Yet, at your age I think it’s even worse, because like someone mentioned above, realistically the situation with your dad will only get more difficult and no one knows for how many years.

I actually think it’s ok that you have postponed college for a year, because this is such a sudden and deep life changing situation that you will benefit from feeling you’ve done this for your dad and also so you can adjust to the new reality. BUT don’t let it become a more than a year thing, use this year to get organized, find out all resources available to you and your dad, and if no other solution is available place him in an outside care facility, visit him daily if you want, give him all the love and attention you can, but build your life! Realize I’m not even saying ‘live your life’, I’m saying BUILD your life. Because the rest of it depends on what you do now, on decisions you make now.

Most of us suffer because we feel in a way we’re being robbed our life as we knew it...but that’s because we had already built a life! Every person needs to to that. Don’t under any circumstances allow yourself to “wake up” five, ten or more years later realizing you are lost, out of time for many things, out of options and alone. No father with a healthy mind and heart would ever want that for a child.
You talk about gambling...well, don’t gamble with your own life! Give yourself and your dad a year to figure this out, but after that get back to your priorities, your personal priorities. Oh, and forget about expecting the world to understand. Just make sure you understand and are taking firm steps towards your future, always including loving your dad and caring for him in a way that is manageable!

Hugs and good luck!
Helpful Answer (7)
Report

Author Anna Quindlin left college for a year when her mother was dying of cancer. Her father requested that she come home to care both for her mom and her younger siblings. She did so, and then made up that year by taking extra courses each semester and during summers. She graduated on time.

Not everyone can do this, and I believe that she and her family had a grasp of the timeline of her mom's illness.

Dementia is different. There is no predicting in dementia. We were told, after mom's stroke and after she broke her hip, that she probably had very little time left. She rehabbed beautifully, despite her vascular dementia and lived quite contentedly in her NH for nearly 4 years.

I guess my point is, don't put your life on hold indefinitely. And, by way of curiosity, is your mom around?
Helpful Answer (7)
Report

Am I to understand that you have skipped your senior year of college to take care of your dad. While that is noble, it is also self destructive. Let him go to an assisted living place and move on with your own life which now is your chance to build a foundation for.
Helpful Answer (6)
Report

People who have not cared for a terminally ill person cannot understand. Even extremely decent and empathetic people can't really know what it is like if they've never experienced it first hand. So, yes, full-time caregivers tend to get isolated. Some isolation is nearly unavoidable. But lots of isolation is not healthy.

Try not to judge your friends too harshly. Maintain whatever level of contact works for all of you, and perhaps you can pick up some threads and resume more meaningful friendships later.

Take advantage of the time the caregivers are there. Dad doesn't get along with them? Hmm ... are you trying to arrange his life so he has no discomfort while you accept plenty of inconvenience in yours? Got to put some limits on that! (Not stop it altogether. Put limits on it.)

Many people take a break from college. Then after they've hiked all over Europe or worked a season at a national park or tried their hand at getting their great American novel published, they return and get their degree. This can all be part of a well-rounded education. But that includes finishing their degree! The longer this gets put off, the less likely it is to happen.

A year off to care for a person with dementia can be hugely educational, especially if you have career interests in the medical field. The snag here, as I see it, is that your father will need increasing levels of care for the rest of his life, and that may be several years. If you give up school for several years, even if you do go back you will be several years older than other students. This changes social opportunities that can affect the rest of your life.

I suggest (urge) you to set a time limit on this break from school. Make it clear to every one that you will be back fall semester. Plan for your dad's future care during this time.

And on the subject of care centers I agree with CountryMouse's view. You want to keep him out of Assisted Living. Why? A care center of some kind is often the best thing for the person. Are you saying that you insist that your father stay home even if a care center is better for him? Why? Most likely he'd say he doesn't want to leave his home. But remember that he has dementia. His brain is damaged. He really may not be able to judge what is best for him. He needs you for that.

How could a care center possibly be better than staying home? My sisters and I were amazed at how much our mom blossomed in a nursing home. The stimulation of live entertainment was welcome (she especially liked a young accordion player). She had never been a crafty person in her entire life, but she liked sitting with a bunch of women making decorations or peanut-buttering pine cones to feed birds. She flirted mildly with the few men there. (Your dad would be very popular.) She liked eating with other people. She didn't feel self-conscious because everyone there had impairments of some kind, and they all just accepted each other. We were glad that medical attention was available without her leaving the premises. We were glad that if something needed two or more people to help, those extra people were available right now.

You can get some of those benefits for your dad right now, if there is an adult health day program available to him. He could sign up for 1 day a week or several. He would have an opportunity to socialize with others. He would get attention from more than one person. He would probably get a kick out of many of the activities and would rather sit out some of the others. That is respected. Usually transportation is available both ways. A light breakfast and a nice hot lunch is provided. Medicaid pays for day centers. Many of them have "scholarship" funds to help people who don't qualify for Medicaid but have very limited resources to pay for their medical care.
Helpful Answer (5)
Report

To answer a few things, i do live in Canada. He has been put on the list for assisted living which can take a few months to find him a place to live.

I haven't yet been to university as i took a year off after high school and worked and saved money which i am now glad i had or this would have been much more difficult.

My mother is around, she is putting my sister through university and paying all the bills etc. Its too much for her to work all day and come home to take care of him as well.

I don't find that my life has been derailed or anything. 21 turning 22 in January, i know exactly what i want to do school wise and i will pursue it after he has been moved into a place.

Although a lot of you are saying i shouldn't be putting my life on hold to take care of my dad, i know that if i would have let him go straight into assisted living from the hospital without at least trying to keep him at home where he is comfortable and feels safe, i would have regretted for the rest of my life. Has it been easy? No. Would i change anything i've done so far? No. I chose this path knowing it would be hard but i will always know that i did my best and tried my hardest for my dad.
Helpful Answer (5)
Report

Ok, now it makes sense. Nowhere did your 1st post say you had him on a list for assisted living.
Now I won't worry about you caretaking him for the next (possible) 30 years! I think that's what the other poster thought too.
Glad that you haven't given up on your education.
We're just concerned for you.
Sounds like you have a good head on your shoulders. God bless you and your dad.
Helpful Answer (4)
Report

See All Answers
This question has been closed for answers. Ask a New Question.
Related
Questions