Caregiving when you're their child (Young Adult)

YoungAdultDaughter96

I don't know if this is even the right place, I know I'm the only one willing to take POA for my father (age 70, EO, and was ES in 2020, AD) so I guess that makes me the closest to a caregiver at this point.

Thankfully he's only at the stage where he forgets recent conversations, he still knows who he is, where he is, ect but is having a hard time with the anger and frustration (he was always angry when he was with my mother from 1996 to 2006) and I'm not always sure if it's because he's reverting to his old habits or if it's frustration caused by the AD. 

I try my best to avoid his anger triggers, obviously I can't talk to him about how much stress and anxiety I'm going through about it so I just tell him I'm stressed from trying to get my business off the ground, I remind him to take his meds, if my step moms not home I make him dinner to make sure he eats more than a sandwich and fries, I have to monitor his phone calls since he's already fallen for a few lies, I have to manage the house and yard (5 acres and multiple tenants), any conversation about selling the place to reduce his stress levels gets shut down (he wants to die here and for me to inherit it), and I arrange rides for him to go to appointments and everything so that he doesn't have to drive (has forgotten his destination before).

I just.. I don't know what more to do, I'm only 25 and haven't even moved out from living with him, I have no contact with any bio family other than his side (which is only him and my uncle), I dont know anyone who had to handle this kind of thing at my age so I don't even know where to go for support and I figured this was probably my best bet. I guess I'm just looking for reassurance that I'm doing the best I can, that I'm not failing him somehow, and that I'm not alone in dealing with something like this at such a young age.

Thank you for reading this all and for any advice offered

M1

welcome to the forum.  You are not the only one, but I'm so sorry.  And I'm not one of the young ones--but we do have some others on the forum and hopefully they'll read it and chime in.

So you already have POA I take it?  His wife (your step-mom) didn't want it?  Is she contributing to his care?  I would wonder off the bat what your relationship is like with her, and whether you see cooperation or conflicts looming as his disease progresses--because it will, certainly.  How to handle her, personally and financially, may be something that you will need to consult an attorney about.  You also mentioned your inheriting the property.  Are there other assets?  What about finances to take care of him, if he needs institutional care?  Have you read his will?  I just worry about your stepmother and her financial interests, you as POA obviously need to be sure that you conserve his resources so that there is money to pay for care if he needs it.  And given that you are so young, it may well be worth the money, if he can afford it, to hire caregivers so that you can get on with your own life.

There are also professional care managers who, for a price, can step in and oversee his care.  If affordable, that is another option.  Because certainly at age 25, I think everyone on this forum would tell you that your own life should take priority.  Glad you posted, and I hope being here will help you.

YoungAdultDaughter96

So he's signed the POA documents back in 2020 but hasn't been deemed mentally incapacitated yet (condition of the POA) so yes and no?

My step mom is common law so not technically married for estate purposes and she did not want POA as she already dealt with her parents having it and doesn't want to go through the fighting again, along with her mental state not being stable.

Is she contributing to his care? Yes she takes care of him for the most part with day to day living (cleaning, cooking, emotional support, ect) and is trained as a PSW. 

Our relationship is very good so I have no concerns about conflict with her. No other real assets aside from the property and bank accounts with minimal balances. My schooling was as a law clerk so I actually helped him draft his will and all that fun stuff.

He does not have savings for any of that since he used most of his savings helping me through school (which I wasn't even able to find a job in that field so that definitely compounds the guilt), most he has is CPP and OAS along with the rental incomes. He might be eligible for extra assistance once he gets further along (according to his doctor). It definitely isnt affordable and even the help he would be eligible for would be a few hours a week.

I do focus on my business and my partner while making sure I do my best to spend at least a few hours a day with him, but I know as he gets worse it will be more and more time, and unless I can get my business going better I definitely can't afford professionals to come in and help unfortunately. For myself, I have started counciling but they have little experience with the grief from this and the diagnosis forced me to actually get back on my meds consistently (I get him to take his when I take mine so it's easier for him to remember). 

I just don't know how to get used to the thought I'm going to lose him without actually losing him, like I realized when I was 16-17 that he was going to just not physically be here one day but trying to come to terms with the fact that he will be here physically but not mentally is alot harder. 

Thank you for the warm welcome and sorry if I'm rambling or anything

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YoungAdultDaughter96

So we're in Canada, Medicare and that stuff doesn't apply. For common law here, she's only entitled to what she's put in but there's no concerns on that end. Since all the rentals share a kitchen and bathroom with him they do not fall under any tenancy laws. 

They do not have joint finances or anything like that, she has no interest in leaving and restarting her life as we have talked about that. Like I said we have a very good relationship. 

I have no way to pay for a lawyer or anything since he is not far enough along to qualify for assistance at this point and even there, where I am there is no financial assistance for estate planning. 

He wouldn't have the ability to sign away the house or anything as I am a co-owner (this was done to ensure survivorship passage instead of going through the will) so the only concern there is bank accounts. 

But I don't really need legal help, I just don't know how to deal with the emotional side of everything. 

Rescue mom

The emotional side—dealing with the “here but not here”—part is one of the hardest things. Many, many people here talk about how difficult and wrenching it is to deal with having a partner, or parent, whose body remains, but whose mind is gone. All the things that we usually think of being that “person”, are gone. A body is here that needs help and attention, but the personality is not. And it’s not overnight, it’s usually more gradual. Some people with some dementias, are affected more/faster, than others.

There is a term for what you’re talking about feeling: “anticipatory grief”. You can Google it, books are written about it. It’s a real thing. You mourn before their body is gone. People whose LOs have other terminal diseases, like cancer, also get it. Counseling helps many, so do support groups—either IRL or online. People who have not experienced it often don’t understand it.

 But like most grief, how each person handles it, or gets through it, is a very individual thing. It’s very hard, but you’re not alone.

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labyrinth

You're not alone. It's a tough balancing act -- caring for a LO as well as caring for yourself -- and it sounds like you're doing so well at it, especially being so young. 

Putting your finger on questions and searching out resources is critical, and you're doing that. 

A couple of things I learned about emotional health as a caregiver: 

Be kind to yourself. Do the best you can in the moment, knowing so many decisions can't be calculated completely. There are no perfect answers. Learn from things that don't go as well as you'd like, but forgive yourself quickly. Let it go. 

That will help to keep you clear and present in what's happening right now. Because from day to day, moment to moment, things will change, and your emotional state will have a big part in how flexible and resourceful you are in meeting whatever the moment brings. 

It's also helpful to be consciously aware of grief and let yourself feel the grief when the moment demands it.

Death comes in many forms in this timeline, and shaking hands with the sadness as it rolls through was better for me than acting like that wasn't happening. The day I saw that Mom no longer recognized me as her daughter was more wrenching than the day her body died. 

Acknowledging grief in small ways on a near daily basis -- grief by spoonfuls --  paradoxically, helped me stay in the present and focused on her evolving state. I saw other family members get stuck in some version of "why isn't she like she always was???" That prevented them from seeing who she was becoming -- and how she needed us to care for her.  

And all those usual self-care things apply. Remember the airplane analogy of putting your own oxygen mask on first before helping others. Your grounded, balanced, clear presence is the best gift you can give your dad now and in the days to come. 

People often wish caregivers "strength." I never felt strong at all. I aimed for resilience and kindness. It felt like a sort of steely tenderness, if that makes any sense.