I’m 22 years old, caring for my 58 year old mother with frontotemporal dementia (FTD). To be honest my dad does most of the work, but for some reason I’m struggling more than him. I’ve grown to resent my mom, I get incredibly frustrated, and end up feeling like a terrible daughter. I’m not coping well at all. I desperately want to move out and get away from this, but I can’t leave my dad to deal with this alone. My sister is only 10 years old and this is a terrible environment for her to be in. She “technically” has a mother, but in reality she doesn’t: she has only a handful of memories of our mom from before she was ill. She is 10 and her mom has a mental age of about 4. I’m worried I’ll be stuck here forever, I’m worried I’ll snap one day and do some serious harm to myself, I’m worried something will happen to my dad and then I’ll be my mom’s sole carer and my sister’s guardian... and I’m worried I’ll get FTD too. Just feeling really helpless at the moment. Has anybody got any “through the other side” stories, to give me a bit of hope? I really appreciate any stories or advice that comes my way. Thank you!

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Shortyhan, you are 22 years of age, that is very young, your world has been turned upside down. You are witnessing your mother, the first person who ever loved you, suffer and your father has also now become less focused on you and your sister as he is focused on your mother. Of course you must feel distraught and like you want to leave it all behind you, this is really difficult stuff, I’d be surprised you could cope. I am sorry you are going through this. There is nothing wrong with you feeling that way.
However I agree with the other writers especially that some counciling is needed

Shorty, follow this link to:

"A Guide for Family Caregivers to Placing a Relative with Dementia in a Nursing Home. Compiled by Associate Professor Suzanne Cahill and Vanessa Moore in association with the Living with Dementia (LiD) Programme, School of Social Work and Social Policy, Trinity College Dublin and the Dementia Services Information and Development Centre (DSIDC), St James’s Hospital, Dublin."

I appreciate that these are difficult economic times, and that applying for and securing assistance is a heck of a battle. I also appreciate the cultural stigmata associated with "putting your wife away" in a nursing home, and the pressure on your father to continue to cope. But it sounds to me as if insufficient weight has been given to three factors:

• your mother's age and the nature of her disease;
• the impact on your father's finances at this stage in his life, which is generally critical in consolidating a secure retirement plan;
and most of all
• the emotional and welfare impacts on your *ten year old* sister.

I expect your Dad is determined to cope. I am certain that he is determined that this terrible misfortune should not interrupt your studies. Bless the man, he sounds a complete hero. But that he *wants* something does not make it possible. Managing your mother's disease at home, at her young age, is not a reasonable expectation.

Why is he coping so much better than you? I suspect: because you're not pretending it's all fine.

Thank you everyone for listening and for your suggestions... something I should have mentioned is that we’re not in the US, so some of the finer details aren’t the same, but the emotions are the same no matter where on the planet you’re located. We’re in Dublin, Ireland btw. I’ll try to answer the questions you guys asked to paint a better picture of my situation, and even if nobody can help I find that writing something like this and sending it off is very therapeutic in itself!

My mom does go to daycare twice a week (we pay for that), and we have a few hours of home help per week (the government pays for that). My dad quit work to look after her, and we’re stull waiting on his carer’s allowance application to be approved (I don’t know if they have this in the US, it’s a government benefit for those who can’t work due to caring for a loved one). Until it’s approved we’re eating into savings for money, so two days a week of daycare is all we’re allowing ourselves for now. I’m in my final year of university so I’m not at home as much as my dad is. That’s what’s bothering me: he does most of the work but I’m the one having a nervous breakdown. He has told me to leave if I need to leave, but unfortunately it’s not that easy because while I’m still studying I can’t work enough hours to afford rent. On top of that there’s the guilt... he said he’ll be okay but I can’t shake the feeling of guilt at the thought of leaving him to deal with this alone, as a carer to my mom and basically a single parent to my sister.

As for extended family, my mom has two sisters living nearby but they aren’t too keen on helping out. There was a bit of a feud a few years ago and we’re still healing. In fairness to them they did all the work when it came to caring for my grandmother (their mother) while my mom did very very little. I guess they still feel resentment towards her for that and I understand that. They understand she is ill now and they take her out for a few hours every few weeks. I guess they feel they did their job with their mother and don’t want to go through it again with their sister.

I’m just feeling really lost. Why can’t I cope and my dad can? Thank you all for reading it really means a lot to me to get everything off my chest. Thank you xxx

Your local council on aging may have some resources that would be helpful for your parents. In the meantime, community orgs, school and church are also good resources for both your parents and your sister. Initially there could be a bit of 'leg-work' involved in setting up some help, but in the long run, getting some day-care for Mom, assistance with transportation and/or meals for the family, and a safety net for sister would enable you to pursue your career and interests more freely. Call the school, check online for community centers, call your church (or a local church --some have ministries that could help), and check online for your local council on aging. Another possible resource is her medical team. Best wishes.

You and your family need some help for sure - do you have extended family - aunts ?
Does your father work and you are home during the day with mom?

This is so heart breaking

If your family needs help figuring out care for mom, folks on this site might be able to offer up suggestions

Your mother needs more care than you and your father can provide.
That is real.

I am so very sorry for your situation. It is a challenging thing, that is for sure.
I don't believe you have resentment for your Mom, but you resent the disease.
If you are considering harming yourself please get some help. Please.
If you choose to stay, think of how your sister could benefit from you. And how you both can find comfort in one another through this. She is definitely going to struggle as you are. She will need some guidance.
Maybe you can take her and the both of you have counseling together, to better deal with the situation.
Shorty I feel for you. And there is no simple answer for you. But this one thing I know for certain. A walk in this life without God, is a long and treacherous journey.
I will keep you and your family in my prayers. May God bless you and guide you.

I’m so sorry your family is dealing with this, such a young age for your mom to be in this sad condition. You shouldn’t be responsible at your age for her care, at least any more than you feel capable and willing. It’s time for you to have an honest talk with your dad and express what you’ve said here, tell him your worries, ask about getting a better plan for her care, and refer him to this website. I wish you the best in this very difficult road with your mom

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