Need help/advice for coping with a dying father

Me | 7/12/2018 | Me

[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.

[Nifster]

Read C S Lewis. A Grief Observed

[Ros42]

I’m so sorry you are going through this. My prayers of strength, comfort, and peace are with you all. Em

[Governor Dinwiddie]

First, you have to be sure that your stepmom has the help she needs to deal with the reality of day-to-day care. She will eventually get burned out which is bad physically and mentally. Make sure she gets time off to do stuff for herself and recharge her batteries. Life can be hell for the immediate care giver if they feel hopeless.

There is a lot to say. You seem to be doing good for yourself. I would try to draw yourself closer to Jesus. He is always there for you. Turn your life over to Him. Get out your bible, and perhaps read the Gospel of John all the way through. Stay close to God in prayer, anytime, anywhere.

I'm sure others here will have their own thoughts to share. Perhaps you could take family leave and become your father's caregiver for a month or two. I'm sure you wouldn't regret it.
 

[MtnClimber]

I have lost both of my parents. My father when he was 59 from a heart attack caused from a blood clot from a medical problem that was not diagnosed correctly for years.

My mom died from cancer that was at stage 4 when it was diagnosed. It was treated and she lived about 10 months that was not of high quality and died at age 79.

I don’t know which was harder, maybe my father because it was unexpected. I just thought to myself that everyone dies and the time is not up to us. Both left a big hole that took maybe a year to start getting over. Just know that you will come to accept the outcome, but b patient with the time it takes.

I will keep your father in my prayers and I know he will be in a better place.

[Moonman62]

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.

...

How you feel is a product of how you think. It’s a sad and difficult time of life. Just don’t make it worse than it really is and your grief will be temporary.

I lost my Mom last year after a little more than a year of dementia.

We can’t go back in time and redo what happened, so beating yourself up over that is no good and pointless. Think of his life as a whole and stop focusing on just how he is now.

[Karliner]

I'll pray. My best advice is to love and listen even if it's hard( when you can since you're at a distance). Sometimes small snippets come back but it's very hard I cared for my grandmother who had dementia and I didn't understand how she didn't know me anymore. She didn't know anyone.

One thing that helped me was a grief support group by a church. Many of the people were suffering the same hardships and way worse. It helped put things in perspective and we helped carry each others burdens.

Dementia is such a tough thing to deal with. There is no magic on this but love and perseverance.

[spel_grammer_an_punct_polise]

** Prayer Warriors Ping List ** desperately needed!

[panzerkamphwageneinz]

I lost my dad when I was 6
He was my hero
I think of him every single day and I’m 56
Fall madly in love with your wife
Because love is a decision- not an emotion
Raise your child in every way that your dad did with you that was endearing and that you cherish.
The priest was a failed man as we all are - his failure is no reflection on our Saviour- I spent 30 years in non denominational churches and recently returned to catholicism- Francis is the bishop of Rome- that’s all. We are disciples of Christ- focus on heavenly things and your father will live - your marriage will thrive- and you’ll walk with Jesus everywhere you go-
It’s going to hurt like hell
It’s supposed to cleave you in half
He’s your dad!
Cry!
Let your tears nourish the memories in your soul and when you hear your baby cry for the first time - you’ll know how much your dad loved you.
Then cry some more and thank him for bringing you into this glorious world where we get to know the joys of life and eternity-
What you wrote was beautiful- you’re one awesome man- and you’re going to be a great father-
Love is a decision
Your dad made that decision
Thank him by cleaving to your wife and never letting go-
Your baby needs that
And your father’s memory deserves it

God bless!

[Gman]

www.stephensministry.com

[Teflonic]

You’re definitely grieving, nothing but time and prayer will ease the pain. Accept and give in to the grief until you start seeing a future beyond it.

If your father can still recall long term memories then record video to preserve some of it while you can.

You’re on the right track working on your fitness to restore your youth, take it even further to reorganize everything in your life from your home to your finances. A new child will consume you so getting all your ducks in a row will ease your mind.

I wouldn’t make any big career changes in your current frame of mind unless confronted with an opportunity you can’t pass up of course. Find solace in your wife, take some mini vacations together, rewatch your favorite movies, and reread your favorite novels. With so much coming at you at once it’s important to take your mind off things however you can even if just briefly to help you find new perspectives.

I’m praying for your future health, happiness, and prosperity. It may help to consider that ten years from now your life and state of mind will be nearly unrecognizable from where you stand now. Chin up, this too shall pass.

[metmom]

You are NOT alone in this.

Many of us have walked that road and it’s brutal.

Yes, reconnect with God, but also look up and find an Alzheiumer’s support group. They are groups that give you wonderful info on what to expect with dementia and how to deal with it. They have resources available and can help in many areas.

The most important thing is to realize that you are not alone in this and that it’s NOT YOU! What you are going through and what you are feeling is very common and do NOT guilt trip yourself over it.

You cannot do this alone.

Get connected with a local support group.

[rlmorel]

MountainWalker, my heart breaks for you, because I know what you and your family are going through.

My dad had a stroke many years ago, and he lived six months, one month in an acute rehab, and the last five at home. We all tried to help, but the brunt of it fell on my mother, and it nearly killed her.

He was paralyzed, couldn’t speak, couldn’t feed himself, had no control of bodily functions, and could barely move one arm with almost no control. He was the same person in there, inside, you could tell from his eyes, but he couldn’t communicate.

I have prayed for you, your family, and your father. Don’t let this fracture your family as happened to ours. Keep together. Help where you can. If someone can’t...don’t judge them. My younger sister couldn’t help. She was devastated, and simply couldn’t face seeing him. I resolved not to bear a grudge, because not everyone is strong enough. And it is a terrible thing to fall prey to the resentment and anger towards someone who isn’t pulling their weight. It is far more corrosive to you than you can imagine. Best to just let it go if it happens. Treat it the way you would if you lent money to someone...you have to lend that money with the premise that you will never get it back.

One more thing-my dad’s prolonged journey towards his eventual demise was something that, at the time was just awful, but in the years since, I have become most grateful for it. I had the opportunity to give something back to this wonderful man who had given me so much in my life...I had the privilege to care for him. I learned things about him and myself in the process.

And I had a chance to tell him how much I loved him, to see that he could hear and understand...and I had time to say goodbye to him. It sounds odd to say, but I wouldn’t trade those last months for anything.

[cherry]

so sorry about your father...that is way too young for such an illness...

why do the good die young?...

first off financially...if your father and mom are well off with lots of insurance and supplements and nursing home insurance, then they are golden...

if not, start now to try to hide away some income...the govt will take everything if they can....

in house care is extremely expensive but so is assisted living etc...

for you, I'll say we've all been there...we all question ourselves every single day...

I've regretted the choices I made..mainly, moving away from my family....

believe it or not, one time when I was feeling funky I watched "Its a wonderful life" and it immediately cheered me up...

we're all adults...we've made great choices and not so great choices...

but there is always always tomorrow..a new day...

[metmom]

One of the hardest things to deal with is the personality change.

My mother-in-law got nasty as her mind went, which is not the woman we knew.

My husband was riding her emotional rollercoaster with her and it was tearing him up.

I finally told him that he had to quit doing that. When she was having a good day, great. When she wasn’t, she wasn’t. But do NOT let her take you with her on her melancholy. It was too emotionally draining and we needed to be there for her.

He needed to remember that what we were dealing with was her dementia, not her. And when she tried to guilt trip him over something, he needed to not let her manipulate him.

And yes, you do need a break. NOBODY can do this alone.

[Kathy in Alaska]

FReeper in urgent need of prayer...

http://www.freerepublic.com/focus/chat/3670798/posts?page=1#1

[GOPJ]

Grieving takes time - - and it’s painful. You’re in my prayers MountainWalker.

[Mark]

I have always thought of the age of death. Some as infant, then 20,50,70,100,120. Then I heard something from one of the famous religious men(Pat Robertson? maybe). He said "Your entire lifetime on Earth is but a blink of an eye in Heaven."

I blinked my eye once and then the statement had total logic- it is ETERNITY.

[metmom]

My parents died from the exact same situation but at earlier ages.

My dad was initially the bigger shock, but after watching my mother deteriorate from the cancer, that was actually much harder emotionally.

The rest of your post is spot on.

[MtnClimber]

Sorry for your loss. It is hard even though it is the natural circle of life. I felt like I had been punched in the stomach for about a year both times.