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.
I am not much for prayers of intercession which I find to be self-serving and demonstrate a lack of confidence that an all powerful God is already on the job.
However, two things come to mind. Faith and acceptance.
Faith is that belief that your father’s passing is not a mistake. That God has a plan and part of that plan is for your father to pass on to his eternal life and for you and his other family to glow in the remembrance of your love for him. His pathway is the disease you have described.
Acceptance is your reconciliation that it is not you that controls life and death, but God, and that since none of us know what is really in our own best interests, much less the interests of others, we need to let God’s will be done.
Definitely prayers up for you. Im in your situation for the second time. My dad had Alzheimers for 7 years before he died 2 years ago. He also lost his speech. For the last 3 years he was an adorable adult size toddler. Very sweet and funny, but busy busy busy and hard for the caregivers to watch. We had 2-3 during the week for him and mom who also had dementia. Now that dad is gone, for the past 2 years Ive been living with and caring for mom. It is extremely hard and you described a lot of it.
The people they were are gone. The advice, the adult conversations. Gone. And in fact when they die it isnt the same horror of sadness as it would be if they had died when they were functional. Its a confusing mourning, at least it was for me, because when Dad finally left, he had been gone so long already.
My mom was politically astute and conservative and bright. Now her broken brain discussed government the other day with well, its a big country so of course we need a big government. The her she once was, would hit her head on the wall to hear such a thing. She reads the LA Times front page and tells me the worst things about Trump or whatever. No frontal lobe discernment left.
It must hv been so hard to see your dad fail that Alzheimers test. When my dad failed it years ago at the doc office, my mom cried on the way home. Now she fails it 100% every time. Has no clue what day, month, season, year it is. Doesnt know who is president. To me dementia is worse than any stage of any kind of cancer. I hope Gd looks kindly on me and spares my kids what I have been going through./
Hang in there. You are not alone.
Thanks, Gene.
If I didn’t have so many siblings to lean on, I probably would have posted a similar thread when my dad was on his way out.
It’s so important to just talk it out in times like this.
So sorry. My dad died 15 yrs ago today at 71 and my mom is going to die any day.
Be happy that they going to a better place and you are their legacy on this earth; make them proud by living every day with integrity.
Tookme a while to adjust-several months- but you will adjust. Holidays were tough the first year or two.
God Bless,stay strong,day by day.
Agreed
When we consider paths not taken in the past we forget to include the unknowns and we compare the real world path we took to an idealized perfect other one. We dont know for example that the house we sold that later on was worth a fortune would have made us rich had we stayed there because if we had stayed there different things would have happened that maybe placed us in a tragic accident or maybe it would have burned to the ground from our faulty toaster, etc. you simply cant know at all what a different past decision would have meant overall to your life. If you start thinking that way just take a mental off-ramp and put yourself in the present moment, the moment that will eventually become your past. That is the only past where you have power. Life is moments and stories.
I lost my dad (2012), mom (2014), son (2015), niece (2014) and cousin (2013) in the last few years. It is normal and real to feel as you do, and nearly unbearable.
You sound like you are doing the right things. It is a new chapter of your life that deserves its own space without being judged as better or worse than the past. It just is. A great piece of music wanders but has a recurring theme that returns and a rhythm that holds it together making it recognizable. Dont lose that recognizable part of you that makes you you even under varying circumstances.
He needs to raw organic coconut oil
**
Yep. I’ve heard this also-good for the brain.
Also heard that MSM 4-5 times a day may help reconnect the synapses. (I’m not a doctor) but I saw this at a docs TV lecture.
My wife is 78 and has stage 4 cancer. We found out two months ago. At the time, our primary care doctor told me she has four to six months, but she is certain God will restore her.
Bone mets ate almost through to her spinal column, and more in her hip, so she can’t walk.
She had ten days of radiation for each, finished a week ago but no relief yet.
I’ve been doing a lot of reading on line about the keto diet and cancer. She has no appetite, so there’s no real way to work it.
I read it may help with dementia:
https://universityhealthnews.com/daily/memory/ketogenic-diet-shows-promising-results-for-all-dementia-stages/
So sorry to hear what you’re going through. I lost both parents in 2013, my dad in February, 2013, from pneumonia (complications from dementia caused by alcohol abuse) and my mom in June, 2013 from stage IV cancer discovered 4 months prior.
I found out from experience, that there are no “checklists” or ordered steps to proceed towards a “solution.” You become exposed to many and sometimes few options and pick the best one and move forward with that until something else makes more sense. Maintaining their dignity, safety and security were paramount in all of the choices that I made for them. Becoming their “best friend” and “best advocate” is a role that you end up assuming as the requirements for care increase.
Some suggestions:
1. Check out the local Alzheimer’s Association’s resources—they are tuned in to all sorts of things to help out with Alz and other dementia related illnesses.
2. Check out your local or state office on aging or elder care—many resources available that you’ve already paid for via taxes. Things like respite care, which will give your step mom a “break” to get away for a few hours or a few days to recharge her own batteries, etc.
3. NOW is the time to make sure that powers of attorney, medical directives, etc., are known about and, if there are “coherent” periods of time, to make any needed changes to wills or final directives.
4. Home health care and assistance is available at fairly reasonable rates. When my mom needed assistance, I was able to hire help for her in the morning hours and also the evening hours so I could get away during the day to take care of the things that I needed to take care of.
5. Take care of yourself along the way. You are of lesser assistance to those needing help if you are struggling with your own well-being.
If there’s any good thing about dementia, it’s knowing with a fair amount of predictability that your family member is on the “decline” but how gradual or steep it is, can vary. Grief is a normal aspect of this decline and you will likely find yourself, as I did, grieving at somewhat random times (e.g. like at a red light while in traffic, after remembering a certain event, etc.). This is all normal and there is an “end” to that grief (post death) after time does, indeed, help to heal the pain.
I send my thoughts and prayers to you and, please realize, that many people are out there to help you with this challenge in life. Is it something that I would want to go through again...NO, but having had the experience and being able to help out both parents in the twilight and, eventually, at the end of their lives is something that I wouldn’t have wanted to miss. One step in front of the other every day and enjoy the new life that’s coming to your immediate family, too.
Straight ahead (on this winding path), and with kind regards and also faith and blessings.
(Please PM if you wish to)
Talk to a mental health specialist because they can help you understand what is going on and offer some good suggestions on how to cope with a hard problem.
Just lost my sister last year to dementia/heart attack. It is a hard burden to bear caring for them but my family pitched in and made a difference until the end.
Ease the strain on your mother. That is very important. Don’t bear any grief about what is going on. You couldn’t have don’t much about it as we learned.
Our prayers go with you and your family.
The problem is really two-fold it isn’t just your fear of your Father’s quickly failing health it is also dealing with your own fears because you soon realize that if such can happen to a strong, good man a Godly man what can possible stop it from happening to you?
The best thing you can do for him now is try to reach those strongest of memories, is there music you shared, places you have deep connection to (A park, beach, a drive). Stories and books you shared that you might now read to him. Reach out and try and kindle those deepest sparks of memory. Sharing such may not always reach him, but it will strengthen your own memories and you must now at times remember and love for the both of you.
Life I believe is a trial the Lord wants souls with him who have been tempered by adversity not just fat lazy sheep. Sometimes we must recognize that and our prayer should not be ‘Lord please take this bitter cup from my lips and force me not to drink’but should rather be ‘Lord give me the strength to quaff this cup and be a better man and servant for it.’
The woods are lovely, dark and deep,
But I have promises to keep,
And miles to go before I sleep,
And miles to go before I sleep.
We went through something similar with Hubs’ Dad last year. It’s tough no matter what. Being at home as long as possible helped BUT Mom had to have help coming in and that bothered her although she could not physically do it. Favorite music, and illustrated books and magazines about favorite subjects helped bring him back for a few minutes sometimes. Dad had “sun-downers” and would get agitated every evening. Most nights Hubs went up there or to the nursing home (at the end) to tell Dad that the cows were milked (the dairy herd had been gone for 15 years by then) and all the chores were done, so that Dad could calm down and get some sleep. He passed in his sleep due to pneumonia last year. Hubs is still down about it but we know Dad is in a better place. Absent from the body, present with the Lord. Praying for you.
Prayers for your father, you and your family.
The best thing you could have done was post this on FR...You got to express your feelings, and found out that you are not alone.
Praying for you, my FRiend, in Jesus Holy Name.
Sorry if this sounds hard, but the situation isn’t about you. It isn’t about your feelings or fears, or what shape you’re in. It’s about your dad and your stepmom. Help them any way you can.
I’ve been primary caregiver for a dying loved one, and I absolutely depended on help from others. Without external help with daily care and nursing expenses...well, I don’t want to think about it. It was bad enough as it was.
Don’t find yourself looking back and wishing you had helped more.
May the Holy Spirit guide and comfort you.
My most effective prayers have been when i go to Him in pain and confusion and simply say "Dear God, please help me"...then let Him work on it/me by concentrating on what's before me for the rest of the time because I don't have to "obsess" over it for Him to do what He does. He has given me much relief and emotional/spiritual closure over the years and He wants your pleas too.
My prayers are up for the situation but I believe prayer works best for those who say the prayers - all you can do is pray and love your Dad as best you can.
God Bless
Dementia is the worst kind of hell for all involved. The patient has no idea what’s going on and the caregiver bears the brunt of it.....I went through this for six years with my mother...she passed six months ago...the last two years of the disease were pure hell - it’s tough to grieve a person who is still alive....watching them day after day slowly die and there’s nothing you can do to stop it. My prayers are with you and your family MountainWalker....please find a dementia support group in your area or join one on FB, support groups are very helpful, people going through the same thing as you, patients at different stages of the disease, caregivers will give you advice and tips on how to cope with what’s coming.
“I just wasn’t prepared to deal with this so soon. “
Nobody is. It’s brutal...I lost my father the same way although he was 86. 71 is too young. Stay strong.
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