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LenaRochelle Asked February 2016

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

Are there any other caregivers in their 30's? In July of 2014 my parents became unable to care for themselves four days apart. I took FMLA leave but eventually left my job. It was the best decision I ever made because my dad unfortunately died a year later. I'm so thankful for the time we spent together. I was his full time caregiver while in a rehab hospital and nursing home because of lack of care from the staff. My dad had a second stroke but he was mentally there and able to talk. He was unable to walk but was working hard in therapy up until he had another stroke in 2015. My mom was diagnosed with frontotemporal dementia at 59. Since my dads passing in July 2015 my moms dementia is progressing. Today after a lot of praying and crying I put the deposit down for memory care. I feel like a failure because I told my Dad I would take care of her. She is refusing medicine and not wanting to listen to anything I say. She is physically OK and able to do a lot of things but needs reminders and guidance. She doesn't cook and sometimes refuses to eat. She is currently hallucinating and acting out on the people she see. Its been very hard trying to sneak her medicine into her drinks. Also we don't get much sleep. I know overall placing her is what's best for her but its hard when I watched and had to report nurses and CNA's while my dad was in the hospital. I'm 33 and my moms siblings tell me that I need to live my life. Her parents want me to continue taking care of her at home but they don't try to understand the disease. They don't understand that I need help. My siblings have been hands off since 2014. I thought if I moved my mom from FL to SC my sister would help but she hasn't.

EXPERT Carol Bradley Bursack, CDSGF Feb 2016
Lena, I'm so sorry that you've had to cope with so much at your young age.

A memory unity is the only way to go. Even though your grandparents don't like the idea, they don't understand the dementia. Also, they probably have an outdated idea about care homes. While there are still some bad ones (much depends on where we live), most have improved. Many are wonderful.

You'll be around to keep an eye on things. You just won't be solely responsible and you'll be able to get on with your life at least to some degree.

You've honored the spirit of the promise you made to your dad. You need to do what is best for all. The following article may help you.
Blessings,
Carol
https://www.agingcare.com/articles/I-promised-my-parents-I-d-never-put-them-in-a-nursing-home-133904.htm

Pekegal Feb 2016
God Bless you Lena. A lot of praying and crying go hand in had with caregiving. I am not in my 30s but it saddens me that you are. I've got probably 20 years on you and I can tell you nothing has been harder. I am glad to hear that you are headed to memory care. You are not a failure. You are getting your mom the care she needs. My mom has never lived with me because her Alzheimer's was already beyond what could be handled at my home with the resources we had to work with. This has never lessened all the weight of responsibility that goes with caregiving. So many times I would think if I only had her in my home things would be okay on my watch. A wise friend, who's walked way too many miles as a caregiver, reminds me that's not true. Things happen anyway and they do. Mom's Alzheimer's is advanced but I'm finally more like me. I've been through getting my parents from their home into AL, through dad's death, hospitalizations, mom's move to a nursing home and the million things in between. I can honestly say she's where she needs to be right now. She's doing well where she's at and is getting everything she needs and more than I even knew she needed. The memory care will be part of your team. You'll still bear the weight of heavy responsibility. It will still be more than you can bear at times. Please take care of you. Get counseling. You are keeping your promise to your dad. He would understand. He would want you to take care of yourself. I made the same promise to my dad, but promises aside, I love my mom, and I can't meet all her needs. I can get them met though and most importantly, I can love her. My prayers will be with you.

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anonymous326422 Feb 2016
First of all, Lena, oh my gosh, I can't believe you are handling all of this on your own! I am so sorry that you are dealing with so much, but it sounds like you made a really good decision for both your mom and yourself.

I am 40 now and have just helped my mom care for my grandparents, and was never their primary caregiver. I know what you have been doing is way different and I hope others in their 30s who have experienced caring for loved ones will write. I am mostly writing just to hope others will comment but also to tell you that your decision sounds very smart and to wish you well!

We started helping my grandparents when my sister and I were in our 20s and my mom her early 40s. We did not know what we were getting into and did not realize how much they had declined till we moved them close to us. I do not regret being there for my grandparents, am grateful that I had the kind of grandparents that I wanted to be around and also that I was able to help. However, there are lots of decisions we would have made differently had we known more. It is exhausting and I feel it changed the way I see old age for sure.

I really feel for you. I hope your sister will offer you more support, and I hope you can take time to start building the kind of life you want for yourself. Best wishes to you and your mom.

help2day Feb 2016
My dear Lena ~ Let me start by saying you have done the right thing. Look for the best memory care facility you can for your Mom. My gosh, in your 30's and your Mom is very young. The course of dementia in someone diagnosed at that age is from 3 to 30 years. If you try to take care of her yourself you may very well end up spending the majority of your adult life with 24/7 care of her. Trust me, dementia does not get any better, it gets worse. Meds can help manage their moods but ultimately this is a brain disease. If you read other posts on this site, you will begin to realize that while taking care of your Mom is a noble endeavor, it will ultimately damage YOUR health, well-being and can and will cause you many feelings -- doubt, guilt, regret, anger, hopelessness -- as well as fatigue. You have already given up your job, next you will begin to feel you can never leave her alone and you will start feeling exhausted and burned out. Sit back, take a deep breath, and think -- do you want to spend quite possibly the next 30 years caregiving 24/7?

As I stated above, find the best facility for your Mom and visit often. She will be safe, warm, dry, fed, cared for. But don't let the guilt consume you. You have done the best by your Mom. I highly recommend the Teepa Snow videos on You Tube. Search them out. Please take the time (and there are many of them) to watch them in their entirety. They are SO HELPFUL understanding dementia for caregivers. Unfortunately, my Mom is 86, frail, fell and broke her leg, and is now in "rehab" but I know will eventually transition to long term care there. It is very hard to digest all of this as it happened 2 days after Christmas and it has been a nightmare dealing with the CNAs (aides) and LPNs in the rehab/nursing home. I must be diligent now in getting her the proper care but I know in my heart I could NEVER handle the intensive 24/7 care that she requires. Do I feel guilty? You bet but I know it's for the best.

Good luck to you, dear. And whatever you do, try not to feel guilty. Seek out some caregivers support groups in your area. Stay in school and by all means finish your CPA exam. You will not regret it. And come back to this forum and let us know how your doing. We care.

EPHOGUE62 Feb 2016
Good Morning,
First of all I need you to not feel guilty. I know this is hard but you sound as though you have done all you can do. I am 53 and have been caring for my Mom who is 89 for a long time now. Recently she came to live with my husband and I and it is tough because we are having a hard time finding a caregiver since we live in an area that is not highly populated. It is not an easy job period. There are some days where I just sit and have a good cry and others where I smile and thank God for all the memories he is supplying me with. Back to you. This sounds like something you truly wanted to do because it was on your heart. I think it sounds like you are making the right decision for your Mom and for you. Just because she is being placed in a facility does not mean you cannot be a part of her care. You still have lots of time to live your life. You are only in your 30's. You will and should feel wonderful about all you have done for your parents. What a blessing that you go to do this for them. I hope that your future is bright and you are happy in what ever you do. I hope you get your career back so that you can live your life because you have certainly done your part.

arianne777 Feb 2016
Lena --
I was a caregiver when I was 28. I hope you follow through on your prayer to God to give you the strength to finish your masters of accounting program and resume your life. You are living in a different world than I was when, with my parents' help, I became a caregiver to my husband in 1959 and a widow with two children a year later. Place your mother before caregiving takes a physical toll on you.

anonymous326422 Feb 2016
Thank you for your kind words, Lena! I know it was a really difficult decision to make about moving your mom to memory care. We are waiting for a space for my grandpa to open up at a nursing home. It is very nerve wracking and not a good feeling, but there just is a point when the person requires way more care and supervision than an individual (or even a few family members) can provide at home.

You were doing really well in school -- that is wonderful! Best of luck whether you return to school or start a new job!

DianneKK Feb 2016
My view may be somewhat different.....not sure. On the fence, really because I totally get both views, and why. I am 36, and have been caregiver for my mom for 7 years, so since I was 29, and I live with her to care for her. It's really hard to watch your vibrant, go getter, mother turn very sick. I'm almost positive she has beginners dementia. In my situation I will not place my mother in skilled nursing care, unless it's my last choice and option. She carried me nine months, and cared for me 18 yrs. I am not going to pretend it's easy, because it's not. I have put alot of my life on hold. Although, I did start college back in fall to work towards a long time dream. I'm also rasing my 14yr oldson without any support or help from his father. To say I have alot on my hands is a understatement. Somehow I make it all work. My advice to you would be to access how bad your mom's dementia is, and go from there. Nursing may be the best, and safest place for her. That's how I'd make the de cision. What's truly best for her, because I'm sure that's what you want for her as well. It's so tough, I know. Sorry your sister is no help. Couldn't imagine having a living sibling that wouldn't help any with their own mother. You know what's best for you, and mom, so I hope you will update us, and let us know how every thing is going. You can't beat yourself up, we all are human. Take care, best wishes to your family:-)

jenz842 Feb 2016
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!

lifeexperiences Feb 2016
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!!

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