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.
Prayers up for you and your family! My mother had dementia for several years, before going into nursing home. Everyone’s experience is different, however it is hell! I found comfort and great advice in my relationship with God! I think your wife gives good advice in suggesting a counselor, as long as it is a faith based one.
Not being Catholic, I couldn’t suggest anyone. I do know the power of the Holy Spirit operates in both Protestants, Independents and Catholics, and many counselors are well known within their denomination.
“Seek ye first the Kingdom of God.... Mathew 6:33 Reading the Bible is comforting, and God reveals his will, and purpose through his WORD. Be blessed, and know others are praying for you’ all!
I lost my dad (also a brilliant lawyer) to a similar course, though his was accelerated by head trauma from a fall, last October. I’ve had many of the same regrets you mention, but I know where my dad is, that he’s having an infinitely better time than I am, and that I will see him again. We have the same Savior. It’s nothing but tough right now for you - do all you can to support your stepmom and try to keep her from “making it easier” for you. She’s the one who needs the supports, and you can help by telling her how grateful you are that she loves him so much. Now is the time for comfort and grace and for being closer to Jesus. If your local church offers it, ask for a Stephen minister, and arrange for one for your stepmom. I’m praying for your family.
It doesn’t sound like you are, but I’ll say it anyway, if not for you, then for anyone else who might be reading.
Even if you disagree, don’t second guess those who are closer to the front lines and having to make the decisions.
It sounds like you have a solid grasp of reality, but frequently the out of town relatives don’t.
It’s difficult, even moreso probably when your parent is so young.
Everything you’ve told us is really about you, not your dad.
Maybe it’s your age and how your dad’s situation is highlighting your thoughts of your own mortality and within those two things, your dad right now and your own life right now, is a lot of coulda, woulda, shoulda stuff. That’s very normal. It’s like self-analysis without someone else acting as analyst for you.
You are judging things. That’s normal too, but just try not to judge too harhly. Hindsight may see things in a different light, but hindsight was not there at the time. We try to make good decisions at any time, and maybe hindsight thinks we should be all knowing and perfect, but we are not. Just don’t judge too harshly.
On the other side, regretting a lot of coulda, woulda, shoulda stuff can be a goad to change, instead of just a bashing over the head for what could have been. The past is the past, but each day is the first day of the rest of your life, not the end of your life, and your path can contain new beginnings.
You now have a child on the way. Your life experiences will change even more.
Since travel is not so easy, talk to your step mom often, as connecting with her and trying to help and comfort her is now your connection to your dad. In its way, somehow, your dad will know, deep down, your ARE connecting.
G-d does not tell us life will be easy and absent suprises and tragedies. He tells us He will be with us, no matter what. Don’t just pray about reminders of that, live it, in peace and comfort amidst whatever the days bring you. You will find yourself aware of it and more at peace, even in the worst of situations.
Trust. We are always thinking we are not doing enough to control our lives, and as you have already seen we are not in control. Trust, that He is with you and be unafraid in a future just because YOU cannot see it.
Find a good priest, go to Confession, have him give you a blessing, go to Holy Communion!!! It will not remove all of your sadness but you will receive strength - (I’ve been there, will pray for you)
I’m just grieving, and it gets better with time,
Lord Jesus Christ, our Savior, be, we pray, with this family through their grief; take the aging father to his eternal home when Thy will is to do so. Lead them all, young and old, to salvation in Thy mysterious ways.
In the name of the Father, and of the Son, and of the Holy Ghost, in the company of saints in heaven, amen.
Prayers Up. Seeing our hero father being broken down by life is certainly disheartening. A part of life hard avoided if we love as we are called to.
Recent diagnoses are attempting to put me on the other end of this equation. Try to be understanding as I am coming to realize this whole getting older thing is very confusing and frustrating at times.
Seek the Kingdom and His righteousness. Forgive. And love.
Interesting about MSM. I know it’s great for you.
Ditto Magnesium. We get too much dairy and not enough magnesium.
MW, I was trying to collect my thoughts for a response to your post. I scrolled down to panzer’s post, and realized that he expressed perfectly what needed to be said. Please take his advice
I will pray for your father, your stepmother, you, your wife, and your coming wee one. You are experiencing the Cycle of Life, so it is quite normal to experience the various conflicting emotions you are having. Prayer is the best resource.
My dear mother left this world in 2007. She also suffered from dementia the last few years of her life. It hurt briefly to realize that she did not know me, but the Holy Spirit helped me to see that it was not about me.
Pray. Go to Confession and then receive the Eucharist. You will be so glad to be reunited with our Lord.
Cry if you need to. Don't feel ashamed. I cried for a long time after the call from the hospital to let me know my wife had died.
Get counseling. Spiritual if you're religious, but get professional help.
Remember that your father/spouse/whatever wouldn't want you wallowing in self-pity.
Keep busy, especially with any legal or financial matters. If you're responsible for an estate, step up and deal with it. Get the help of a lawyer, a realtor, the VA or a veterans group if that's appropriate,
Keep your siblings involved, and help them cope. Be the one they can lean on.
You're married? Accept the support of your spouse, but don't take your troubles out on him/her.
Remember, your father also lost his father. You're not the first person to face this situation. It won't be easy, but the others got through it, and you can too.
Pray for the strength to bear up. Help is on call when you need it.
I read down on the responses and didn’t see this answer. Pray for your step mom. Thank her because she was sent from heaven if she is doing a great job as you say. Bless her, your father and your family.
Prayers up and continuing for your father and your wonderful stepmom, for you and for the family. It’s a great blessing that you have been able to enjoy him for such a long time!
Watching my sister and father die of cancer made me appreciate the quickness of heart attacks too.
One of the hardest things for me was to come to the realization that God is NOT like my human father. God's love is unconditional and everlasting. He knows us better than we know ourselves, He loves us and wants what is best for us. Resolve to do what you can to honor your Dad, pray for him, love him and carry on his legacy of love, integrity and respect to your child. I pray you find peace with that.
I only have one piece of advice, and maybe you’ve already figured it out.
When somebody develops dementia or a mental disorder, nothing they say counts. It could be the most hurtful, hateful, horrible thing one person could say to another, but it doesn’t count. He didn’t say that. It was a malfunction.
You can’t let it hurt or anger you, because it’s just a symptom. After a while it gets easier just to let it roll off you like water off a duck’s back, and finally you hardly hear it.
“O Lord,
support us all the day long of this troubled life,
until the shadows lengthen and the evening comes and the busy world is hushed,
the fever of life is over and our work is done.
Then, Lord, in your mercy,
grant us a safe lodging,
and a holy rest,
and peace at the last,
through Jesus Christ our Lord.”
—Richard of Chichester, 14th Century
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