Posted on 07/13/2018 9:06:10 PM PDT by MountainWalker
Hi FRiends. I've been having a tough time over the past 18 months and was hoping for any advice, books, ideas, prayers - anything that could help me get through things because I'm hurting and feeling lost.
My father, 71, has been diagnosed with a degenerative brain disease - Frontotemporal Dementia. He declined extremely rapidly at first but has now leveled off, mostly because there's not much left to lose. We went from seeing him over Labor Day 2016 and noticing something might be a little off to him having failing to tell the doctor the names of his kids, what year it is, who is the president, etc during a cognitive test in the doctor's office in February 2017. It happened that quickly.
He has steadily declined even more since then. He cannot speak in sentences anymore - mostly yes or no replies. Over this time, we've had to take his car and hire a daytime assistant while my stepmom is at work. He has trouble cutting his food, washing his hair and has been having some accidents, not to mention doing other embarrassing stuff. That's the short version, but you can imagine the agonizing details of what we've all been enduring.
It's been utter hell, and we haven't even bearing the brunt of it. My stepmom has but has been handling it like a trooper, at least outwardly to the best extent that she can. I live too far away to get there as often as I can like to. My brother and sister are a little closer, but it's still a 6 hour drive for them. It's not much easier to fly to where he is.
I think my stepmom's goal right now is just trying to manage him until my brother's wedding a few weeks. She's talked about getting live-in care for a while as the next step before eventually having to move him into a nursing home toward the end. She's been trying to protect us as much as possible though all of this, so if she says he's ready for the next step, it means he was really ready weeks or months before.
He's still alive, but it's just been crushing me as if he were already gone because he mostly is. He was always my go-to for serious life advice and just general wisdom about things. He's the type of guy who knew a little bit about everything and lots about a lot of things. He was a brilliant lawyer, and now he's been reduced to a shell of himself to put it in the most charitable way possible.
I just wasn't prepared to deal with this so soon. If this had happened when he was closer to 80, I think I'd be finding more peace with it. I know others get dealt worse hands, but it's still so difficult.
The thing that I just cannot get over is that I just cannot escape the sense of regret that I feel. Regrets that have me questioning all my insecurities about all the decisions I've made from my marriage, which is overall good but far from perfect - probably as is with most married couples. To not starting a family sooner. To not feeling fulfilled in my job and perhaps choosing a different career path. To not spending more time with him when he was healthy.
I think I'm just feeling my mortality in a way that I haven't before and am panicking. I'm 40 years old, so I'm not that old but certainly not that young either.
So, I've made some changes in the last year. I've lost 40 pounds, and if I'm not in the best shape of my life, pretty close to it. I've been working on more professional development at work and at leisure, teaching myself Spanish for the hell of it. My wife found out last weekend that she's pregnant for the first time, so we're both excited and nervous as early stage pregnancies are always far from a safe bet.
I've been feeling better about certain things, but I still feel this crushing and inescapable sense of pressure, despair, regret and loneliness that's only gotten worse despite the positive changes in my life. I just don't know what to do. It's something that others have noticed in my personality too. I see reminders of him everywhere and the grief comes rushing back. It has me wishing I could just go back to an earlier stage in my life and enjoy those things with him again.
I do consider myself a Christian, though my faith has kind of waned in recent years. I was raised Catholic, but between Francis and finding out that the head priest and my role model from my high school was kicked out for fooling around with a male student (he was at least 18, so I heard) has left me rather disillusioned. I wouldn't be opposed to faith based healing, but I'm neither sure nor unsure that it's right for me.
Maybe the best thing is to go see a counselor, as my wife has recommended. Or, maybe it's just something I need to somehow ride out, that I'm just grieving, and it gets better with time, though I'm far from out of the woods yet. But, I'll take whatever advice I can get. Even just writing this helps a little bit.
Thanks in advance for any prayers or advice and for listening.
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I had a similar situation with my dad. Someone gave me this very good piece of advice: say everything you want to express to you dad, even if he doesn’t seem to understand. It’s the stuff you don’t say that ends up haunting you later. You need to have said it.
Perhaps you could try rediscovering your Catholic faith as another way to keep the connection to your dad alive. Experience it in a new way.
May God bless you.
Praying for you and your dad and step-mom. Dementia is very difficult. Find a good church, pray and follow your wife’s advice to get counseling. And keep taking care of yourself, that’s a plus. You’ve got a lot coming at you all at once and that is stressful, while you’re processing grief.
Thanks to everyone for all the prayers and helpful advice. I’ve read ever word of all of your replies, and I can’t express how much better I feel already. Free Republic really is heaven on Earth. :-)
My wife is in year 12 of Frontotemporal dementia, we have started year 3 in the nursing home. I continue to work because I can’t afford to keep her in the nursing home otherwise and her physical needs are too great for me to try to provide at home. My wife was an elementary school teacher who had just retired when her symptoms started. I have been through all the stages of grief with this illness. I have the following observations to make.
Bad things happen to good people. There is no why , there just is.God will explain it to you later.
Do not put your faith in worldly religious leaders, they will fail you every time. Put your trust in God.
Cherish every moment you can with them. Your father is still you father. Support your Step-mother- her burden is great also.Tell your father that you love him each and every time you leave him.I try to remember to do this each time I leave my wife.
Prayers for you and anyone else in need of them tonight.
Amen, FRiend.
May God guide and strengthen each of us, as we work to Walk with Him.
Tatt
I just lost my Sweet Mother 3 weeks ago to this disease.
My heart broke 5 years ago when she first displayed symptoms. She knew then that something was very wrong and she would lash out in fear of what was happening to her.It was very sad.
Dementia is very cruel because it robs the person of their ability to enjoy family and friends. It gets to a leveling off point, but all you can do is love them and realize they still love you but are locked in another world inside themselves and are unable to do so.
When God called my Mom home it was a blessing because she always knew where she was going. The misery was finally over for her. It was for us too. You grieve and miss them long before they die.
All you can do is cope the best that you can. There are no magic pills to make it better for him or you.
Bless you. I am gonna cry now.
My posy at #108 was for Mountain Walker. Sorry Nifster.
It’s ok. I figured as much
It’s hard losing one’s mom
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