How are you processing being a caregiver if you are in your 30's?

It is hard for everyone to have to take care of our elderly loved ones. But esp hard when you are young. At least when we are older, we may be retired and have more time. But having taken care of my husband for just a short time and looking at my parents and wondering if I will need to take care of them ...has made me think hard about my own care when the times comes and will take measures to have things taken care of so nobody else will have to.

just want to add to my comment above. it's greeeaaat if you love someone enough to want to give up you life and care for them...but...there are some seniors that don't even take into consideration that this might be an impossible task for some of their loved ones. NO ONE should feel guilty if the CAN'T FULLFULL THAT OBLIGATION BECAUSE THEY HAVE A FAMILY OR MAYBE TOOO YOUNG OR TOOO OLD OR ARE SICK THEMSELVES...OR DON'T HAVE THE MONEY!! Dam...i take care of my parents...my mother now has severe dementia...it's been about 7 years...and wow...could NEVER have knows....that I would live to care for them. Thank god...i was single and didn't have kids cause it consumes my life! Thank god I adore my mother...that love has helped me get thru this incredibly hard journey!! arianne777 YOU SOUND LIKE A DOLL! LOVE YOUR POST!

No one ever asks to have help when they need it. Everyone at some point in time needs help. What they don't understand, is that they DON'T think they need help. Everyone else can see that someone does, except the person who really needs help.

It's not a burden, to those who truly love and want to help. It becomes a burden, when the ones who need help, think they are truly capable and does not require help. Proud, vain, afraid of losing their identity? who knows?

Why not accept a helping hand? Age group? or just cannot accept losing control? No one loses control, unless you let it happen. Some people are there with loving hearts and truly want to help. Isn't that what you, as a person would do?

I didn't feel my husband was selfish in wanting to die at home because I loved him and he was willing to accept home hospice care in addition to the care I, in my early 80s, was able to provide. On the other hand, at 85, I would never think of asking my adult children to provide at home care for me if become severely ill. I would just pray that I would go quickly.

it's amazing the guilt that some of our loved ones put on us!!! i think it's horribly selfish for someone to tell their loved ones that they want to die in their home...UNLESS...they have the money to pay for someone to come in and care for them and NOT put the burden on someone who has to give up their life to do so!!!

I'm a little late to reply, but I'm going through much of the same thing. I'm 31 and the primary live-in caregiver for my grandmother. Her one wish is to live out her days in her home and, though my mother is involved, it really lands on me.

You're not alone!

everyone does what they feel they need to do for their specific situation. you have done your best and valued the time you had with your father. and remember not everyone is the same with dementia issues. some can be handled with ease and no issues, others have tantrums/refuse to eat/take meds, etc. when you start to feel drained/angry/resentful/helpless, you need to seek out help. in your case you decided on a memory care place. now you can visit/see how things are going/have a good relationship without any fighting to take meds/etc, but to actually visit and have a good time. don't feel guilty. we all do what we can with what we have and for however long we can handle. wishing you the best of luck. I am 58 and was helping my mother deal with my dad for 2 years until he finally had to go into nursing home due to dementia and refusing to take meds/eat, slowing down, getting angry/holding walker above head and screaming. he is now in a routine environment.

I'm 34. I've been the full time, primary caregiver for grandma for the last 8 years, so I started this journey in my mid 20's.
First, *hugs* Second, and I'm using caps because it is important. YOU ARE NOT A FAILURE. This disease especially makes it almost impossible to care for your family. I work as a CNA in assisted living/Memory care. It is easier for me to care for 25-30 residents overnight (in assisted living) than my one, singular grandmother. She sees me as family and not a licensed healthcare professional. She listens to the other professionals more than she will listen to me, her granddaughter. There is enough familiar to me that it makes it harder for her because I also bring the past with me when I am with her. I know when she is misremembering and when she is with it. I don't correct her, but it makes it harder. I watch the family of my residents feel the same inadequacy when I can get their loved one to eat/shower/do whatever when they just won't for them.
Just because mom is in memory care doesn't mean your work is over. It is just different. The facility will still be calling when they need clarification, assistance, supplies, anything really. You will still be making decisions. It is still a hard job. You are still a good daughter, and providing mom the best care possible.

tacy..... no, I wasn't playing her game that night... I basically live next door, and can see anything going on..

Fruit of the spirit=longsuffering

Thank you so much to everyone that shared their stories and gave words of encouragement. I will try to address some of the things i saw amongst the comments. Currently I don't have any regret about taking care of my parents and putting my life on hold. I lived life to the fullest every day prior to all of this. I worked hard but played even harder. I have a ton more that i want to do in life but i was definitely thinking my dad would bounce back like he had in the past. My dad had a brain tumor removed 2000, thyroid surgery 2003, kidney transplant jul 2006, heart attack and triple bypass dec 2010, stroke oct.2011, stroke jul.14 and he had multiple strokes in June 2015. My dad will always be my superman. In the beginning i actually hated when people would say i was putting my life on hold because i didnt see it like that. Also when my dad was alive my mom was ok with the caregiver being in the house because she knew she couldnt operate the hoyer and take care of him so i was able to get a few breaks. I had one of the caregivers with us in SC to bury my dad and my mom said what is she doing here, she takes care of sick people and your daddy is dead. I was speechless. Then my mom said are you sick, is there something you want to tell me.
In 2011 my mom started complaining about headaches that wouldnt go away but they didnt find anything on her brain scans. In July 2014 my mom was seen by multiple specialists the hospital called in an additional one before they gave the final diagnosis. They had brain scans from 2011,2013 and 2014 to compare along with their evaluations and she was diagnosed with moderate to severe FTD. She gets confused very easily. So ive never been able to leave her alone.
Someone stated my parents wouldnt want me to stop living my life. Very true my dad had a lot of guilt about me taking care of them especially because of the lack of sleep and my own medical issues. I always reassured him that i was thankful for the time with them and i didnt want it any other way. Our plan was an assisted living for the two of them this year. He was ok with it because they would be together and i could go back to work. My mom enjoyed her stays at the behavioral units and was very vibrant when we went to visit so im hoping the transition into this beautiful and very active environment is quick. My parents knew each other their entire lives and were married for 38 years so its been very hard on her and she keeps saying she wants to see him and touch his face. Since i wrote this post we have had days that prove i made the right decision for her. Im sitting in the ER now as i write this comment because the man she sees in the house touched her inappropriately and caused her to become very upset and aggressive. She even blamed me for him being in the house. They gave her a pill that dissolves on the tongue that should help with the hallucinations. They didnt recommend a stay at the behavioral unit with her being so close on the wait list for memory care . We told her the medicine will help with her asthma and allergy to pollen so hopefully she will take it everyday. Once again thank you all for sharing your experiences, giving your honest opinions and encouraging words. I was crying while reading the comments. Im glad i posted.

Thank you Tacy..... I am really trying....and reading posts like yours and others, has made me a little bit stronger each day.... After our discussion that I wrote about earlier with her, she has taken the phone off the hook, because she knows I will worry and go check on her.... My will is getting stronger, because I don't do that anymore..... Hopefully, I will be where your at soon!!!!!

btw.....I am not in my 30's but lower 50's...... I just saw the original post, and felt compelled to answer.....

thank you too Tacy...... I came home just now, from running around for her, after making 5 phone calls to different agencies, for her health ins, dad's life insurance, medicare, social security etc......then the grocery shopping and mailing out her mail... My cousin calls, (dope head) who never comes around unless he needs money, Obama has cut his food stamps, now he's worried about money haha.... he calls my mom, and says he will work on the gutters that have fell down from snow, when he flat out told me 1 1/2 weeks ago, that I would be better off going somewhere else.... wouldn't allow me across his property due to messing up his grass....he has the right away thru his yard.... I took the high road and left it all at that.... but, mom takes his call, and tells him to come over and fix the gutters, after I made plans for someone more dependable to fix them..... I am soooooo livid, again I could scream...... am I wrong again? why do I always question my decisions? why does mom treat everyone else like gold, and WHY am I still here.... I guess, I figure that is what my dad would want me to do.... we talked at length about if he were to pass, and that she would need me more now than ever.... it just breaks my heart...... again, thanks....now extremely hopeless, angry and betrayed....again...

thank you lifeexperiences... you have know idea, just hearing kind, thoughtful words, even from a stranger has warmed my heart. Yes, I still take care of her, even after my dad's passing. There are so many times, I just want to scream. Especially, after taking care of her as a nursemaid, housekeeper and personal assistant. She is OH so pleasant, and working on everyone's sympathy after dad passed. I listen to her put me down, and "I'll tell you after she leaves" to the other person, and they turn their noses up at me, or don't even acknowledge me. I lost my job, my husband, my son, my self-worth, like everyone else, I am trying to find the lost "me" in all of this mess. It is very hard, being by myself. But, reading these threads has helped immensely!!!!

Thanks again for your words and understanding!!

Hello Lena,
Tragic, but it feels better to hear that I am not the only one in this situation. Although I was 38 when my (widowed) mother Diane was diagnosed 4 years ago, I still haven't settled down yet, tons of problems to solve for my Mother and no support whatsoever from institutions, government or siblings, including sister or aunts and uncles. We have a special situation that leaves me isolated with my mother in Florence, which is not too bad a place, as my parents had moved to Italy from Canada when I was 11yo, ironically for the same reasons, as my grandparents were getting older and less self sufficient. There too, I remember being left with them alone at their house in the summer several days.

This tragic neurological degeneration first gets a toll on you, makes you take leave from your work and you soon become redundant from your job, your relationship starts failing and it is hard to start a new one.
To be optimist, things can only get better. After loosing my father, my mother lost her memory, she lost her autonomy, I lost my freedom, lost my job, lost my partner, lost my family and siblings who all disappeared into selfishness, lost my house when I started renting it out to pay for a caregiver for Diane and we'll loose her house when she will go and my sister will force me to sell it.
So things have been going pretty much downhill the past few years. Lost myself a bit too. I was told to look after myself, as it is the case, at this stage, when few of the people surrounding you realize that you have no life, although they wouldn't have the solution or advice on how to do that, other than telling you to put her into a home.
So I will read this thread carefully and see if there are any other solutions, otherwise, she'll end her time at home with the caregiver this year and I'll find a nice place for her, rent her house to pay for it, get my home back and possibly my life... if I don't have to manage the home full time to make sure they take good care of her. We still have to visit and probably spend most or all of our spare time visiting our loved one, who normally refuses to go into a home.. but she thinks she is still sane.

dearest Hopeless2016! Wow...your father and you have been abused by your mother all his and your life...and you are taking care of her??? your story breaks my heart...because you are looking for love from a mother who has never given you love...and is emotionally abusive on top of it...and i guess thru the years...you have tried, over, and over, and over, and over to win her over!! my god...i wish you had the strength to leave her and fine your own life with someone that will love you and make you feel special...like i'm sure that you are!!!! my prayers are with you!!

Tacy022... I feel exactly like you... my dad recently passed away, due to many health problems, which I think my mother caused many. She has dementia, is narcisstic and very controlling, along with being a liar. Due to the disease, I guess... she has sucked the very life out of me. Looking back, caused my divorce, lost the connection I had with my only son, and I'm am the only caregiver. I do everything for her, but she will tell people, I am a very bad person, cannot trust me, tries to take control etc.....

I purchased a book for mother, to help deal with dad's passing.... How would you feel, if you sister in law, who you are not very close too, but is to mom because she calls her everyday, thinking (and I'm not exaggerating) that she is mother Teresa.. I think she has something wrong with her too... but, after finding out that I bought the book, for mother, she said, "make sure you tell her we appreciate the thoughtfulness of her gift to you".... like I'm some outsider, dealing with all the hatefulness, hopelessness and deceitful ways of my mother?
My question is: how would you feel? I'm her daughter, been there for everything, for my father, for her, but my sister in law acts like I'm some family friend or something. Am I being hateful, jealous, a bitch or what.... I am so confused everyday with dealing with my mother, but she has everyone thinking she is a very sweet, kind loving individual, while I'm a hateful bitch..... am I crazy? I feel like I am....my life too, is completely on hold. Everyone thinks that I'm some kind of witch, and treats my mom with cruelty...I guess... please, need some help sorting this out...my family, is out, because they don't want to hear it, or help out and they have lives that don't include my parents, and never have.

Lena:
I am also 33 and going through something similar. My father passed away at age 64 and right around the same time that he got really sick, my mom was diagnosed with early-onset Alzheimer's. She does not believe she has the disease yet I have had to quit my job and move in with her also because she doesn't eat on her own and can't take care of her house. I don't feel right putting her in assisted living (why are there not assisted living facilities for early-onset?? She is only 63 and I don't want to take her entire life away and surround her by 90-year-olds). Besides, she has just lost her husband and had so many life changes that it would be very detrimental to her. She also hates me because according to her I "stole" her car keys and forced her to live a "miserable" life by taking away all her independence. Anyone who imposes the new limitations of this disease (i.e. me and the doctors) is evil and crazy in her eyes. The verbal abuse got so bad that we had to get her on anti-depressants to calm down her temper tantrums.

Most importantly, Lena, and everyone else in this forum who has had to become a 24/7 caregiver at such a young age, if your parent or loved one has Alzheimer's/ Dementia, there is a support group for caregivers under 40 through the Alzheimer's Association which has really helped a lot. We have a google meet-up every other week and I have gotten a lot of support and really good ideas from the girls in the group, ,most of whom have been doing this for many years and are very experienced. It's also nice to have people to talk to about this who understand. If you'd like more information feel free to contact me!

Yes I think if you have the strength to place her in a home, I would probably recommend. Caring for a parent with a long term illness is a lot of work, extremely time consuming (without some kind of day program or in home assistance) and way too much for one person, alone, for sure!! My mom also now doesn't want others helping her with ADL's..she just refuses assistance at the day program. I think if you place her maybe sooner she would get used to others helping her, too. I guess I wouldn't wish the same on someone else near my age, although I am caring for mom by choice. If there are no day programs or other high level of other care support for breaks, it would really, really wear a person down emotionally and physically. If I had been alone doing this, without my partner and extremely understanding friends my age, it would have not been possible emotionally for me, personally. Even with all that said, it has its nice moments and difficult, as well, still. Reach out if you want to talk. Thanks!

I am doing the same for the last 3 years and I am 38 now. I met husband and was dating him a year before she became ill. I just got married and my husband is okay with caring for a parent at home as he sees it as what he is used to seeing grandparents at home in his home culture who also needed assistance. He is not used to the idea of placing a parent in a care home, but he is supportive and knows that if that day comes where I can't do this anymore, we will do that. He is able to help out and I've scheduled in a regular "fun" event to go to a couple nights a week and maybe a friend night. It is harder to get out, network and to meet new people and luckily I have a couple of supportive friends. Friends have to visit me more. It is sometimes hard to explain what I am doing to others my age I find. It is not the norm of what people my age are doing, that is for sure. I had to move into a city with more day programs. Day programs don't cover evenings though and that is when many 30 year olds go out to socialize after 8-5 jobs. There is a day program nearby and I am using that to find time to do school online, but it is not easy. I feel like I have very little rest time. Some things are okay though like mom comes with me to run errands, eats the meals we make and seems to enjoy moments when I am present or we are as a family. She seems to keep talking about things she did in the past. I visited a few memory care places and felt my mom would not adjust well so I am putting that off for now. However, she still talks about what she used to do in her home town as if it will still happen the next day- that is painful for me as she has since moved. I could not keep caring for mom if I were younger and not married. That was the hardest part. It is too hard if interested in meeting someone and starting one's own family. I will just see how this goes as so far with the day program and me focusing on school online, it is working okay. I think probably placing a parent when this age is the best thing to do unless having really good family support around maybe or in home assistance coordinated. I give her all meals and assist with a lot more. The day program is helpful as it is close, but I think I really need a good 8 hour day to myself to finish the online program. It all gets expensive, too, and I care homes are probably less that trying to get the help in the home. one needs. We have our nice moments though with her at home. It kind of keeps me organized to stay busy. I had to quit my other job as this is more than a full time job.

Wow...everyone is asking tooooooo much of you!! You are doing the right thing...sounds like you can't help your mother anymore...and she will get better care with the experts. and you are toooooooooooo young to give up your life...and no one should ask you to do this. people love to judge...but NO ONE will come and help you...nothing new! stay strong...live your life!!

There is no right or wrong answers - care giving especially to our parents will shake us up like no other; there is no process, no preparation for it...when this challenge comes hang on to your support system. It sucks, a lot of tears, helplessness, guilt, patience, clueless moments and challenges, in the end all that matters is we need to be strong inside for them...Stay positive no matter how rough it gets.

Although young, you will experience caregiving burnout.

First off, I'm so sorry for what you're going through. My mom passed for dementia last year. I was 47 with two useless siblings who did nothing. I couldn't imagine losing my mom at your age. You are to be commended and praised for what you did for your dad and ate doing for your mom. Second of all, get help! If placement makes sense then do that! It's ok and you're not failing anyone in any way. Providing the level of care necessary is very hard when you're doing it alone. Please check back I. With us and trust your heart!

Bless your heart Lena...I do believe you are making the best decision by putting your Mom in a care center. She can get round the clock care and you can still be a part of her life without having the sole responsibility of her. You are too young to have to go it alone and you do need to live your own life. Don't be so hard on yourself.....and don't feel guilty. I would suggest the book, The 36 Hour Day...a book about caregiving for those with dementia...it clears up a lot of questions and helps you to look at all the ins and outs of caring for someone you love.

LENA: READ. LISTEN. YOU DO NOT HAVE TO KILL YOURSELF OVER THIS.
Memory Care is the way to go, you can't help your mother 'recover', the course of the disease is inevitable. You have done far more than most. Please please please read these messages. Destroying your life (and it will be that, destruction of your life) isn't going to make your mother all better. you could die before she does. Heck, mine is now in a nursing home, is doing absolutely GREAT, though I lose a lot of my health, wealth, and happiness until I got her in there. (I swore I was not going to endanger my marriage or retirement savings no matter what.) Good luck to you, I wish you happiness in the rest of your life

Lena, so young. I too am a now unemployed but looking accountant and former BOM. I only spent about 4 months living with my mother on hospice. This is exhausting, stressful, and overwhelming at times. My mother was old and frail but she did not have any dementia or Alzheimers, thankfully. If she did, however, I would have no choice but to put her in a long term care facility. I am simply not qualified. I was not and AM NOT qualified to care for someone with these illnesses for 24 hours a day 7 days a week. I lost 32 pounds, dark circles under my eyes and now I am having trouble finding a comparable job to the one i had. Do what is best for your Mom, and find professional behavioral and MH health care at a LTC home. It is too much to ask of 1 person. Do not feel guilty because if you choose to go the LTC route at a good quality home, you will be doing the right thing for your mom. Hypothetically speaking, if you did stay with her, can you do the mental evaluations? Prescribe the right meds for her condition or when she has signs of anxiety and agitation? No. Your Mom needs professional help and you cannot throw your life and education away. Would your Mom want you to do that? I doubt it. Do what is best for your Mom. I am sorry if, it is your grandparents, dont understand, but frankly, you are too young and it is too much. What would your mother want you to do?. I think you already know the answer. Would your mom want you to quit school and live with her alone until you are 50 or 60? Pls do not feel guilty....do the right thing. i understand that with these diseases, there will be a point where she wont even know who you are, her daughter. What would your Mom want you to do, never mind the naysayers.

Not knowing the age (obviously quite advanced, but a substantial range is possible) or health of Lena's grandparents, I was wondering whether they would have been able to get involved at all, such as keeping their daughter company some of the time or feeding her. Even token help would probably be of some encouragement, and allowing some respite would be beneficial to Lena.

Lena first of all I commend you for your desire to do the right thing and for being a great daughter. I am now in my early forties and started caring for my parents at 31. My dad needed kidney dialysis then transplanted 2 years later in 2003. And then my mom also needed kidney dialysis and subsequently transplanted a few years later. They were in their late 60s and there was no way they could manage the medicine regimen and multiple doctors appointments. They were in and out of the hospital. It is very hard to look back and see how my career didn't evolve. I'm still not making what I was making when I stopped working. your career development definitely will take a hit as well as your retirement account. KELLYB I also had a child I was raising who is now a young man. It is really hard at times to know neglecting my career didn't allow me to provide much better for him. I love my parents as many of us on this forum do. Caregiving is a very difficult job and the sibling that takes on the majority of the responsibility takes the hardest economic and emotional hit. Good luck Lena. It sounds like you are doing the very best you can.