He's still here but I'm already grieving

Stori

I miss my dad. He could fix anything. Answer all my questions. Always kept me safe. 

I'm trying my best to keep him safe now, answer his many questions about why this is happening to him. 

He's such a private man. Never showed it if he was sad or scared until now. 

I don't know how to watch this progress, each day my heart breaks again and again. 

I don't pray but if I did I'd ask for it to be happening to me instead. 

This ?!$& disease is cruel in ways I didn't know existed. 

I just want ten minutes back with him before dementia. I never told him he was the closest thing I have to a hero. Or thanked him for everything he did for me. 

Does he know anymore how much I love him? 

I'm such a lousy caregiver because I accidentally hurt his feelings yesterday.

I love you Daddy.

ninalu

Hi Stori,
I'm so sorry for the ways that you and your dad, independently and together, are suffering.
Alzheimer's has also felt to me, as I've accompanied my mom through it, incredibly cruel at times. 

One thing I'll share from my experience is that you have time with him now, even in his current state, to tell him and show him that you love him. If you regret things you didn't say "before", can you find ways to say or do them now? There are not many gifts of Alzheimer's that I've been able to find, but one gift has been that my mom didn't die suddenly or quickly, preventing us from having some very good moments in this journey. Since my mom and I spent a lot of time in our lives apart, prior to Alzheimer's, I'm grateful for the fact that we actually have time to ensure she feels loved and cared for now.

It's not perfect. In fact, it's deeply imperfect, but the time we have is one silver lining. 

You're not a lousy caregiver for accidentally hurting his feelings. Being a human isn't easy and we hurt each other sometimes, without meaning to. That you keep showing up, that you care, that you're trying ... try to thank yourself for making space in this difficult experience to express your love and how much he means to you. 

Sending you a hug, one caregiver child to another. 

Arrowhead

You are NOT a lousy caregiver. The fact that you feel so deeply is proof of that. He may not consciencely know how much you love him, but deep inside he feels it and he knows. He may no longer be strong, but you can and must be strong for him. 

I would like to tell you that the journey will get easier, but it won’t. You will survive this, and that will enable you to survive anything else that life throws at you. You are stronger than you realize. None of us are perfect caregivers, so just do the best that you can. 

ButterflyWings

(((Stori))) - sending you loads of virtual hugs. What a beautiful testimony to how deeply you love your dad, and how much you care. He is very blessed to have you as his daughter, that is so clear. My heart goes out to you both. 

I can't improve at all on what Ninalu and Arrowhead have written from their hearts. They said exactly what I would say to you. Word for word. Thinking of you...wishing you all the best under these challenging circumstances.

GothicGremlin

Oh, Stori, I'm so sorry.

Your post is meaningful for me today (I'm having a moment). If my dad were still alive, today would have been his birthday, so I'm kind of in a reflective mood.

Please know that you're not a lousy caregiver, you're a very good one. Care giving is so hard. I'm care giving my younger sister now, who has early onset Alzheimer's. Sometimes I screw up and say the wrong things, but I do my best. I'm sure you're the same. It's a pretty steep learning curve, and nobody prepares us for all of the things we have to do. We're kind of on our own.

My sister is pretty far along now (later stage 6), but even now she has her clear moments where she can understand what I'm saying to her, and I try to take advantage of those moments to say  things that I didn't say before. She probably won't remember them, but at least she knows them in the moment.  Your dad may not understand your words now, but he'll hear your tone of voice, he'll see the expression on your face, and he'll know that you love him.

​fesk

Stori, I think we all understand how you feel. I struggle with knowing whether I can handle what's to come and grieve the losses daily. I doubt myself, my decisions, etc.  I do believe this is the most difficult thing I have ever done. I'm trying to find the balance of preparing myself for what's to come and take it day by day.

You sound like a very caring caregiver. Yes, we all make mistakes and have shown frustration I'm sure. This is extremely difficult. I'm sure your dad is aware of how much you care. Try not to dwell on anything in the past but take each day and moment as it comes. I believe you will still have moments to express how much you love him and will he know. Everything you are doing on a daily basis shows that to him.

Hang in there and know you are not at all alone.

Cyndisaunt

My father passed last year after 12 years with dementia. 

I loved all the responses above. 

I wanted to add that I held my father's hand, he has such rough, strong hands and that did not change until the very last months when he became very thin. 

Continue to speak to him. I believe that there is more going on inside than can be seen from the outside. There is a lot of research on this and my experience is that the more you can accept and be present in the moment the more you will both find a way to communicate. Even in the silent moments. 

Hugs.

Cyndi

Melanie12

Hi stori. I couldn’t help but choke up as I read your post. I am in the exact same situation with my dad. He’s my hero. I’ve always wanted someone to talk to who could relate with me. If you’re comfortable maybe we could exchange emails. My name is Melanie btw