Advice for a young caregiver?

TenShoes

Hello world, this is my first post on ALZconnected as I have just recently joined. I have never joined a support group before and I do not know anybody else with a parent with Alzheimer's so here I am giving this a try.

For some context, I am 20 years-old and my father who was diagnosed with Alzheimer's is 79 years-old and was diagnosed officially about 3 years ago. However, his symptoms were present in the years leading up to his diagnosis. I am an only-child as well. I have some half-siblings but they do not call/visit with my dad as much as I do, and most of them are no longer in the picture. My mother is his primary caregiver, and we are pretty much in this together without much support from other family. I oftentimes feel very helpless to this situation. I wish I could care more for my father but am barely able to support myself emotionally, physically, and financially, much less him as well. 

This is a very isolating situation for me, being so young and still feeling so dependent on my parents. Definitely the most lonely I have felt my entire life. My mother and I have had a rocky relationship over the years and my dad has always been the "glue". Growing up, I was aware of my father's more elderly age but I never imagined he would be taken from this world in this way. Alzheimer's is truly a heartbreaking illness. I would like to reach out to other young caregivers who are also navigating this very difficult situation at a young age. How do you find hope? What keeps you motivated?

Also, another feeling I have that is very hard to cope with is jealousy. I know this is a very selfish feeling and way of coping, but it burns inside me when I see other people my age with their healthy parents doing things I will never be able to do with my father ever again. It feels like my family will never be complete again. I wasn't ready for this. Even if a peer of mine mentions their father I feel my heart swelling with pain and jealousy. I find myself often thinking: Why him? And I know there's no answer to that question, but it haunts me.

Thank you for taking the time to read this and thank you so so much if you are kind enough to leave a comment. It has been extremely hard for me to open up to anybody about this, even my own mother, but I can't keep coping with these feelings by shoving them down. So here I am. 

Together we are stronger. ❤️

FlowerpowerVt

Hello and welcome. I’m not sure I have any advice for you but I certainly understand your feelings. I am 63 and have been taking care of/ living with my 88 mother with dementia for two years. I have never felt so lonely in my life and can totally relate to you being jealous of your peers. I am very jealous of my friends who are at the height of their careers or recently retired and are enjoying their lives when I can barely make it through the day. The only time I can relax is after she goes to bed. I would be happy to stay in touch with you as we go on this extremely difficult journey. Take care

Dana88

Have you discussed with your mom you getting a job and or going to school and the two of you work out a schedule? Having a job or going to school even a few days a week or half day puts you in contact with other people, gives you a chance to earn some money, and share the work with your mom.

I too am an only child. I had to move home about 4 years ago, I retired early to take care of mom. When I worked I was able to talk with coworkers/friends about stresses at home. Sometimes you just need someone to vent to. And now, post-retirement, I talked to them on the phone every few days. They have been wonderful in coming over for dinner or just to talk and have become friends with my mom. My mom does not know I am her daughter and knows no names, but she knows we are there to keep her safe. I have learned to take them up when they offer to watch Mom so I can go out to eat with friends from out of town or get banking done.

Being able to share the load with your mom will be good for both of you. This way if mom wants to get out of the house to shop, bank, run errands, or visit her friends when you get home or on the days you have off it gives her a break as well. It is easier with help. Not easy, but easier.

Best wishes on your journey and enjoy the time you have with your dad so when he passes you know you have done your best for you and your family and have no regrets. (Or at least that is what I am aiming for:-)

Emily 123

Hi TenShoes,

It's hard to have a parent who's ill when you're launching into young adulthood. It's ok to be angry that the dementia has put you in this position, and normal to feel resentful, and sad, and to miss your dad when you see people enjoying their families. My father passed away when I was 14, and I felt 'different' for all of high school, though it really wasn't on people's radar. It's great that you reached out, and I know there have been a few younger posters lately so hopefully you'll find each other.

I'm sure it wasn't your mother or father's intent that your life be subsumed by his disease.

I think it's commendable that you help your mother, and it's a loving thing to do for your dad. (My dad was like yours-the peacemaker.) No doubt your mother is elbow deep in caregiving, which can leave little time for self care, or even making sure the rest of the family is having their needs met.

Is your mother aware of how isolated and alone you're feeling? Perhaps you may feel like you don't want to 'bother' her or add to her stress level, or you feel like you have to help but are struggling with how to find (or to ask for) a good balance between having a life AND helping with your dad.

If you don't feel like you're at a point to discuss this with mom, what about counseling? Talking things through with third party who's in your corner will open up new ways of looking at your situation, and let you see that you aren't alone. Especially if you feel isolated it's sometimes just good to talk. So often we think that we should be able to handle things on our own, but to have someone listen when you're feeling stuck is so helpful. And if you do go that route, remember that sometimes the chemistry might be off with one counselor, in which case it's ok to try another until you find a good fit. Like shoes! :) I wish you the best of luck,

lev

Ten shoes, this is my first time on anything likes this as well. You are not alone !!!! There are millions of us out here doing our best. You are doing the right thing, as hard as it is, its right.
Is your mom or dad a veteran? If so, you all could qualify for additional assistance from the VA.

Starrfleur77

Dear TenShoes,
Thank you for sharing about all that you are dealing with. I'm in my 40s and feel blindsided by my mom's dementia and how it is progressing. I relate to your feelings so much. I feel the jealousy at times as well. Since I've been feeling so overwhelmed with trying to be there for my mom so much and facing my own health struggles and my father's health struggles, etc..., I've insisted that the family focus on hiring a home health aide/companion. I see that I need to take care of myself instead of pouring everything into caring for my parents and dealing with other responsibilities.
My heart goes out to you!

Starrfleur77

Hi again, TenShoes,
I was hesitant to offer advice in case it feels off-putting, but I realize that you asked for advice in the heading of your message. Is it at all possible for your mom to arrange for a home health aide or a neighbor or friend to come in at least one day a week for a few hours? I'm making sure to take breaks more often now to go for a walk or watch a show I like or listen to music. I'm hoping that helps me decompress over time.

Tliebal57

Hi I'm 66 and take alot of the responsibility of taking care of my mother as my sister is not yet retired...although my mother n sister live in the same house I live with my husband and my family, I also feed my mother in law 5 nights a wk n help with my 11 mos n 22mos old grandchildren . I have never in life seen my mother be mean ever until about a yr ago...idk how to handle any of this I cry most nights 🌙 especially after spending the days with her n when she calls me saying my brother stole from her again when in all reality she's hiding her own things 💔 and tears her rm apart n blames him I've tried to tell her she's wrong n that makes her angry...she has always been not only my mom but my closest friend and I dont even know her anymore my heart 💔 is so broken. Any advice would be greatly appreciated

Tliebal57

> @Tliebal57 said:
> Hi I'm 66 and take alot of the responsibility of taking care of my mother as my sister is not yet retired...although my mother n sister live in the same house I live with my husband and my family, I also feed my mother in law 5 nights a wk n help with my 11 mos n 22mos old grandchildren . I have never in life seen my mother be mean ever until about a yr ago...idk how to handle any of this I cry most nights 🌙 especially after spending the days with her n when she calls me saying my brother stole from her again when in all reality she's hiding her own things 💔 and tears her rm apart n blames him I've tried to tell her she's wrong n that makes her angry...she has always been not only my mom but my closest friend and I dont even know her anymore my heart 💔 is so broken. Any advice would be greatly appreciated

HannahG

Hi I am 25 and my mom has dementia and it is progressing faster than I’d thought. I have a sister but she is busy in PA school and doesn’t contribute as much. It’s just us and I care for my mom and I too feel like it’s very isolating and that feeling of jealousy is also there. Like how come my friends have moms who don’t have dementia or even strangers like I see people my age with their moms and it’s not the same. I get it and while I’d like to say I found hope…I’m struggling myself. What keeps me motivated is just the small moments where my mom has a clear thought or she smiles or laughs. It’s really hard but take it easy on yourself and it’s ok to feel however you feel.

Sarah_pdx

My mother was diagnosed with ALZ when I was forty and I felt too young and was jealous of my friends with healthy parents (and all the healthy elderly people much older than my mother). It’s hard; go ahead and feel whatever you feel.

What helped me the most was attending a caregiver support group for adult children. We ranged in age from twenties to sixties. The emotional and practical support was golden. The group I attended was virtual. Now that my mom has died I miss them.

ksg3812

Hi! I am 27 and my dad has had Alzheimer’s for a few years. It just recently got very bad. I completely relate to all of the feelings you are sharing. I often feel jealous when I see my friends with their parents. I’m so sad that I have to miss out on this stage of life. I feel like I grew up too fast. Sending you hugs.