For those who have cared full time for decades, any advice for a 21 year old?

OP here: switched this question to “new to caregiving” forum. Can’t figure out how to switch it within the question.

Thanks,
Silverbird22

Silverbird, can you provide additional information to help us understand your situation better? What are the living arrangements and is there anyone else in your home? How old is Mom and what does she need (in addition to being bedridden?)
Taking care of someone who is totally immobile, is more than a FULL time job. Taking graduate level courses and trying for a social life --- also a full time job. And then there is housekeeping, meal prep, grocery shopping etc. Are you able to carve out any time for YOU?

More information: I live with my mother and father, who are both in their early fifties. I have just completed my course requirements for my PhD and am left with three years of research and thesis writing.

My father works a fifty hour week, and comes home for about half an hour every day during lunch to help me with diaper changing, etc. He takes extra hours off while I’m having meetings at school. In home care left a year ago due to insurance, because “she wasn’t improving.”

Mother has an undiagnosed autoimmune disease (still undiagnosed after two years at Mayo Clinic) and it was a big success nine months ago that she was able to hold a spoon to feed herself.

Doctors predict she will need care for the rest of her life. If we are incredibly blessed, she may be able to stand after a few years of intensive therapy, but the immense pain she’s in won’t dissipate.

She has food allergies, so I make all food absolutely from scratch, clean the house, order and shop for food... everything. My paltry salary from grad school pays for my undergraduate loans and for medical supplies. That’s considered my “rent” for living at home.

I dated a coworker that I adored for two months a while ago, but it felt like it was just one more person to look after, and i left him quickly.

I think you must be a wonder woman already to have completed a bachelors, masters and doctorate course work by 21 years of age. I think YOU should be making suggestions to us...seriously! How did you finish what normally would be about 7 years and only be 21 years of age?

GardenArtist: I’ve only finished the course requirements for a PhD, not the research. My program requires two years of classes and three to four years of research. Then I get my doctorate. I’ve only finished the first part. And yes, I skipped a lot of grades when I was younger (with the support and help of my now very ill mother).

But THANK YOU for calling me Wonder Woman. I get few compliments nowadays and I cherish every one. 

Hi Silver,
Wow, I'm sorry your lovely Mom is so sick at such a young age. I'm 52 myself, I couldn't imagine her anguish.

We are all products of our upbringings. We usually do not know how that will manifest in us, until it does. Sometimes we have ways about us we don't understand. Changing unwanted preprogrammed world views can be difficult. For some, it remains a part of our mental schimatic and must be traced back to it's origins, to be changed.

I say all this to say, relationships need time, cultivating, energy, patience, understanding and so much more.

If the co worker you'd dated seemed to be " just another person to take care of", unless he had mental issues, your world view seems skewed. Since you said you "adored" him, I'm sure his mental status was fine. If you're seeing what was needed, from you, as * caring* for him, that's a red flag. Where that comes from is obvious.

You're not new to caregiving. You've been at it some 3 yrs now. 

What do you think your regrets might be?
 What do you think your long and short term effects will be? 

What do you think the repercussions will be?

You are an amazing young lady and a gem as a daughter! I would love for you to have it all. But we can't give someone a dollar, if we only have 28 cents. Someone and/or something will always be short changed.

I was in my mid-20's when my mom, in her early 50's, was diagnosed with dementia. I have 7 siblings. I'm the middle child. We grew up in a very dysfunctional childhood. Everyone fled home as soon as they reached age 18. Unfortunately (I say this now looking back), I 'found' God in my early 20's. Due to our culture and now my religion, I was obligated to help dad take care of mom. He had to quit his job when mom deteriorated too much - that she could no longer be left at home by herself. I continued to work full-time and stayed home to help him with mom. When mom was too much for dad to handle alone for a certain amount of time, I had asked my boss for me to work part-time. That was my life for the next 20 years - work & home 24/7. (And another 5 years when Dad became bedridden.) In all that time, I was only able to get off island 3 times because none of my siblings or their kids were willing to cover for me so that I can take a vacation off island. (Moral of the story: try not to center your life just between studies/mom. You do need some outside recreation to renew yourself.)

Silver, it was a very difficult time for my dad & I. He became a very bitter man and took out his frustrations on bedridden mom and me. I remembered in my late 20's or early 30's, I saw an airplane flying overhead. I had always dreamed of moving off island, find a job and travel around the US, England & Europe. That day, as I watched the plane fly overhead, I started crying so hard. Because I knew that I would never realize my dream. Every year, I thought that this is the year my mom would die. She didn't. I spent 20 years thinking of this. She was bedridden for over 13 years - and only had one very bad bedsore - due to spending a month in the hospital. Mom was on stomache tube, 24/7 oxygen and trache. (Moral of the story: don't let the 24/7 caregiving drown out your dream. I really do admire how far you have gotten yourself. Please don't get lost from that path.)

My advice. Find outside help. When my mom was diagnosed and dad retired, he enrolled mom on the gov't program (for low income family) and requested that they break mom's 4 hour weekly allotment to 4 1-hr visits in which they would bathe mom. He applied for mom the meals-on-wheels program. And somehow, he got enrolled in the NFCS (National Family Caregiver Support program) for himself. This is only for the beginning. Eventually your mom will need more care. Please don't end up like me and my dad where mom became the center of our lives. We worked everything around mom.

Oh, does your mom have a social worker? They are a godsend! Even if we rarely see them - except once a year. But, I do strongly recommend finding outside help. The rate you're going, you will wear yourself out. It will affect your studies.. just like my caregiving affected my work. The hard part is that my dad and I knew that we needed help but we just didn't have the money to pay for it. We didn't qualify as low income. But after paying the bills, mom's pampers, wipes, etc.. we really didn't have much money left for food. Dad would refuse to eat his meals-on-wheels lunch. He would wait for me to come home from work, and insisted we split that measly food between us. It was a struggle...

Let us know what you need. Or ask a question and we will do our best to respond.

I’m so sorry for what you are going through , that is unfair given your age ! You need your own life and I couldn’t imagine that you parents won’t want that for you , your only here once in this planet , you need to start making your own life and having some free time . Your mother needs a woman who can come in a few hours a day and releave you of your duties with her , you could even think of doing school in another state and telling them you need to leave for a bit . They would have to figure it out if you weren’t there !

I'm glad that you're finding experiences you can relate to here. Realising that one isn't alone is one of the most frequently reported benefits of joining AC, and it is astonishing what a weight it can take off the shoulders.

But I think it's unlikely that you will encounter many people with your unusual particular issues. While investigations were being carried out on your mother, did anyone offer you screening? Would it not be a good idea to find out as much as possible about your own genetic profile in case that has any bearing on decisions you may be faced with?

Just don't fall in to the common trap of being so focused on your mother that you forget to take care of yourself.

Silverbird, you are correct that there are so few younger caregivers doing what you’re doing. From someone who is 3X your age, many of us have had our schooling, made our careers and families, and possibly retired. Granted our various caregiving situations now may not be the life we pictured years ago, but we’ve made our lives, and made our choices. You haven’t had the opportunity to make your life yet. You obviously love both your Mom and Dad very much and are an awesome daughter. I don’t have any specific advice for you but just some questions...
Without being morbid, what is the long term prognosis for your Mom? Could she remain in this condition for another 20-30 years?
Is your Mom communicative?
Is this the life you think your Mom would want for you?
Is this the life your Dad wants for you?
What would you like to be doing in 1 year? In 5 years? Can that happen with the current situation? How can you move toward that to make it happen?
If you can carve out a little time for yourself I would really recommend speaking with a professional councilor. You are doing an awesome thing for your Mom, but I am concerned that if it continues much longer it might affect your ability to have good relationships and outlooks. Caregivers are exhausted people. I visit my mom in her NH daily 4 hours and I have to take a nap when I get home. You’re much peppier than I am, but you’ve already realized that you didn’t want to spend the energy to add one more person to your life. You evidently want a partner and children..how much energy will that take?
Us older folks can’t put ourselves in your sneakers, just give you some motherly/grandmotherly thoughts and hugs.

I think the care of your mother isn't yours to figure out - it is up to your parents. Giving up all your time allows them to shirk the responsibility to do what it takes to get your mom proper care, it is just enabling everyone to live in denial - years could pass and nothing will change. IMO someone who is totally bedfast and who has an indeterminate length of time to live needs to be in a nursing home, both for the sake of their family and because they can receive better care there... even the totally immobile can be transferred with lifts to a wheelchair to get out among other people to passively take part in any activities offered.

Silverbird, when my Dad needed help around the house and for himself, he hired caregivers from an Agency that was licensed, bonded, insured, and had workman's comp for their employees.

The caregivers were wonderful. The Agency sent out numerous caregivers so Dad could see if he felt who was a good match. Dad choose two who had a similar childhood as he did, and would laugh at Dad's sense of humor. The two caregivers were with him for over a year, even later when Dad went into Assisted Living. So don't be afraid to try caregivers for your Mom if she and your Dad can budget for this.

I think the financial aspect is much more difficult when someone in their middle years needs care, not only is a dual income family having to make due on one salary but the cost for adequate home care or a facility are beyond what the family can reasonably bear. It is one thing for someone in their 80's or 90's to spend their life savings - that's what they were saving for after all - but something else again for someone to commit their present and future income and comfort. This is not a do it yourself project, your parents need the help of a good financial planner and lawyer who understand these issues.

Financially, you are not paying in to Social Security or savings for your own retirement.
If you worked the caregiving hours, that would change.

Medically, for your own health, considering the heredity factor, you need to work now in case something unknown befalls you early in life.  What I meant to say, is that you need to be working now so you will be having a life at all and the income to live it independently.

Start working now, at 21. Do the best you can.  Or, change your major to geriatric care, obtain a caregiver contract from your parents, and start paying in to the system of social security.

There are other ways to plan your life, but working is one of the best, imo.

Oh, excuse me.  I have not cared for someone for decades, so maybe I do not qualify to be giving a 21 year old advice.  It just seems like decades.

Silverbird, while it is clear that you Love your parents very much, and want the very best care for your Mom, who supported you through your schooling and you so respect and admire her for that, but You need at the tender age of 21, be allowed to finish your education, to Begin your Much anticipated Career and your Life, just as your Mom and Dad would have wanted.

There Must be some alternative Caregiving Arrangements available to your Mom, either privately funded, or funded through Social Services, and you along with you Dad, must research this with the help of a dedicated Social Worker. I would start with the Mayo Clinic, where your Mom sought treatment.

I wouldn't go so far as to say you will regret the years or "decades" that it may take to care for your Mom, but at 21, Yes, you cannot get these years back, and you need to have the Opportunity to fulfil your life's dreams, and the opportunity to meet your future husband, and have a family before it's too late. Also, by delaying your career, you are not being able to invest in your own future towards fulfilling life's goals, becoming a homeowner, babies, and setting money aside for your own retirement, as believe me, in this day and age, it's so important to start early, as one never knows what the future holds. I have 4 kids in their 30's, who all are working hard to set aside for their future, and I cannot stress enough to them how important that is!

Your Mom, she sounds like an incredible person, who was dealt a horrible fate and illness, and I'm so sorry. Do you have any siblings and other family that can help? Your Dad's income, is it sufficient to pay for outside help, I'm talking at least 8-10 (or more) hours per day, so that he can maintain his work schedule? A good Social Worker will help you to find the resources necessary get your mom the proper care, and you do have to come to terms with the fact that it maybe necessary to place her into a Nursing home. I would look into a small private Adult Family home, or a Nursing home run by Catholic affiliation, as I've heard they do give wonderful care, and you do not have to be Catholic to receive care there. Thankfully this is not a medical emergency, and you do have time to do the research to find her the best possible care.

Well these are a just few things that I could think of off the top, but most importantly, do remember that your Mom would never expect you to shortchange your life, she only wants the best for you, and by getting things in place for her now, she will be able to see you succeed in life, so do allow her the chance to see this for you! You aren't abandoning her, you can still be an integral part of her life and her health care, just in a different way. Give her the opportunity to see you reach for your dreams, it is Her life's Dream too!

Also, your Dad will also be needing respite from the difficulties and long hours of caregiving, it is impossible for one to do this indefinitely and on their own. We hear countless stories of folks here on this forum who are suffering caregivers Burnout. Most of the caregivers are older, in their 50's and 60's and even older. It can truly wear one down, and even kill the caregiver due to poor health and stress. You have got to think of the whole picture, not just the here and now. It is Whole family concern. Take Care!

OP here. I think the best advice I’ve gotten so far is about retirement. I tried to do it last year but the forms were returned for some reason I don’t understand. I’m trying again right now. Hopefully I’ll get the fund working this time.

Thanks for all the other advice; I’m taking it all to heart.

-silverbird

Silverbird, did you mean Respite? As it doesn't seem as if "retirement" is in the cards for you, YET! LOL! Keep at it, there's got to be Something that you can do!

Stacey,

I meant about saving for retirement. The secretary at work is about to retire and she keeps begging me to start saving, especially if I’m going to have so many responsibilities. The posts here reiterating that are the most helpful.