How to Cope? Non-car related

Fellow Hambers. Hoping some of you could help me understand or how to cope. About 5 years ago now, my mother was diagnosed Cortical Basal Ganglionic Degeneration (http://emedicine.medscape.com/article/1150039-overview). The syndrome is extremely rare maybe a couple thousand in the world, maybe. The symptons are similar to parkisons in limb disabilities, speech and memory loss. While there are medications for Parkinsons, there are NONE for CBGD. Its a crap shoot to find a cure and nothing has done it so far. The downside is with CBDG is it is a degenerative disease, meaning it will eventually take over her body. It is extremely hard watching your parents, friends, family life begin to wither away. My mother is 60 years and has been an absolute blessing, she has stood by me through me through every step of life including my OBSURD and IDIOTIC teen years. It is very hard and trying on me to see my mom slowly fade away.
Not sure if this is the place to talk about it, but could really use some advise on how to cope.
Thanks for listening, Andrew

 

Andrew.
Find a local church in your area. Most large churches have councling services available. You may or may not be a christian. This may not be what your looking for but it's certainly a place to start. God has big shoulders. My prayers go out to you and your mom.
Leroy

 

Join the H.A.M.B. Gimp Squad

http://www.jalopyjournal.com/forum/group.php?groupid=445

im sure someone in the group can help

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You've the first thing you needed too. Reach out and ask for some help which can be the hardest thing too. Im hoping some of the other guys on here can chip in with some real advice. All I can do is wish you all the best mate.

 

Andrew - I have pm'd you, my father in law just passed away from Cortical Basal Ganglionic Degeneration and I can give you some support around this.

Andrew (my name also)

 

Thank you guys for your fast responses and wishes.
Slobroy, great advise, just not for me. Raised in the jewish culture and turned agnostic/atheist after this waterfall of stuff has been happening to her. First Cancer now this. Why doesnt bad happen to the bad people (sex offenders, killers and so on)in the world? Whole different topic though.

 

Many of us have watched as parents,spouses,kids,friends,have died from disease.There's things in life that can increase odds of disease,but many times it's just bad genes or bad luck.
This may sound harsh,but you got to get over your depressed mood,you aren't the one that's sick.This isn't about you,it's about your mom and family.You gotta put on the happy face for her,ya know,"fake it to you make it"
The strength is in you!

 

I would also suggest that if she doesn't already know, let her know how you feel about her, how much she means to you. Try to avoid later feelings or regrets like "I wish I would have said or done XYZ ..... "

I'm 49 years old & I still kiss my father everytime I see him.

Good luck with your mom, hope everything works out !

Steve

 

Everyone is going to die, including sex offenders. If you don't believe in afterlife, then there is little consolation in life lived well and there is no hope of a reunion after death. You can look at it is cruel that someone is being taken or you can look at it as a blessing that they were ever a part of your life and worth missing when they are gone and you can carry on their legacy of goodness to honor them.

So for me, I found strength and acceptance through religion when my mother passed.

Like you, I knew it was coming and so did she. We had time to air our grievances and get any questions out of the way and we spoke frequently and honestly about anything and everything of consequence. Towards the end, we just sat and held hands after she could no longer speak. That was words enough. I was sad to lose her but I never deserved having her to start with. She was a gift to me on loan.

When she got sick we decided to fulfill all the dreams of hers that we could, including finding a beautiful 1960 Thunderbird convertible. She only got to drive it one time but she made us drive her in it whenever we could. To this day, I can't look at that car without seeing her in it, smiling and happy.

See if there are unfulfilled dreams that you can help realize for your mother. Spend time talking with her, address her concerns about long term care, dying, funerals, etc..., THANK HER FOR EVERYTHING, talk to your friends, and live the rest of your life in a way that would make her proud. And maybe, just maybe, don't be so hard on God for letting her be a part of your life and then taking away her pain. There is a plan for her I suspect. And I believe it's a whole lot better than the plan for the sex offenders and killers.

You can take away my preaching here but don't miss the opportunities to thank her and communicate with her and also address your own needs during this rough time. My prayers are with you either way brother.

 

Jesus!

 

We all get that way when we face the big trials.My dad died when he was 65 and he was such an awesome dad that I didnt think I neaded a God.I had been learning in church at the time to thank God even for the bad times and the day he died I stood there convulsive thanking God for taking my dad.The exact opposite of how I felt.I almost puked while I was doing this but the crazy part that you may not understand is that as soon as I did this, God started pouring in answers to me as to how me and my dad could have not had what we both wanted in life if he had not gone at that exact time.God would not let up on me for two weeks until I finaly yelled out to God enough I get it.I know this is hard to understand without knowing all about me and my dad but I can tell you there was no other person on earth more important to me than my dad and I can tell you with all honesty I am at peace with how God makes his decisions.He realy does know whats best for us and when we are all in Heaven together we will understand more.Never give up buddy! Dennis

 

Don't think about the bad stuff that will happen down the road. Make the most of the time you have with her, and deal with the rest as it arrives. My guess would be that she doesn't want you fretting over it, I know saying this doesn't help your feelings but do the special stuff while you can, because that will be the best stuff you remember, and it will show her how you care.

 

My PM didn't seem to work, sorry.

My father in law, John, just passed away a couple of weeks ago from Cortical Basal Ganglionic Degeneration, and I just wanted to pass on some wisdom gained from this experience.

John deteriorated slowly, physically, but his mental capacity was sharp until the the end. Keeping him stimulated and occupied became more of a challenge as his body became less useful to him, but books on CD, good television shows (documentaries, science shows etc.) helped. Conversation was ultimately what he wanted.

My advice to you is to do as much as you can as soon as you can with your mother. Take her for walks, out to dinner and on trips as these things will all become more and more difficult as the disease progresses.

Love your Mother more than ever. It is going to be very tough, but you need to be strong and resourceful. Your heart will break from this, but your Mom needs you now, be there.

PM me if you want more support around this.

Andrew

 

My nephew also has a terminal, degenerative disease for which there is currently no cure. My family has focused on raising money for local researchers to help find a cure. We do all kinds of fundraisers, and have raised quite a bit of money for research. We've been able to at least "put a dent in things", and it really keeps your mind in a better place than dwelling on the negative. I've found that the secret to getting your mind off certain things is WORK. Work hard at something, and if you can make it something that may help find a cure that's even better.

I'm sorry to hear about your mom. Whether you're religious or not, it's certainly easy to see that life is not fair. There's no good answer for that one.

 

My mother was bed ridden for 10 years unable to function before her passing. So I understand what you feeling. Seek out God for help in healing your pain and hers.
I would ask her if she is saved , if not help her to find salvation it will go along way toward peace after she is gone. Prayers for you and your family.
Gary

 

My father died of cancer,my brother died of a heart attack,my uncle died of cancer,my mother-inlaw died of cancer,my other uncle has cancer,my grandmother died "old age"...now my mom tells me she has 6 months to a year and you guessed it ..cancer. Its time I got a will made.I am now the oldest male in my direct line and the writing is on the wall....

 

It's sad to say, but we all will dye someday. It's what you do in the time that you are here. You can turn your feelings to hate, disbelieve once valued thoughts, or like you said, wish it upon others, but in the end the most important thing to do is comfort her, tell her you love her as much as possible and make her happy and by doing this it will make you happy also. Don't hold grudges against others, it will only eat you up also, which is the exact opposite of what your mom and you and your family needs right now.

 

You got my prayers man. Both for your mom and her entire family in coping.

I really hate to think about when that time will come for me but I hope someone will be praying for us (entire family) when it does.

 

I wish I had some advice for you, other than to just hang in there.

My mother suffered a series of strokes several years ago, followed by a couple of bouts of seizures. She had been doing well for the last 3 years, but passed away suddenly this past Sunday at the age of 63.

I guess the big thing is to be able to be comfortable that you did right by her and know that she knows just how much you love her.

Best wishes to you and your family.

Tim D.

 

you have my prayers, i lost both of my parents to young. mom to cancer and i understand your frustratrions. she fought 14 years with alot of ups and downs and the thing that got us thru was the great memories and laughter. they both said to the end that they had a great life with us 7 kids and had great memories.
my dad was a tough old german that didn't say i love you alot but we always knew he did, he showed it in other ways. but he later explained that his dad didn't say it so i gess it was just that way, as he got close to the end of his life that changed i heard i love you from him alot and he said be shure to tell all your kids how you feel.
spend every minute you can with her and talk alot about the great times and great memories. and be shure to say everything now while you have the chance.
GOD BLESS.

 

Just went through this with our Mother . She just passed ,we got to watch her ( in my words rot away ) from Alzheimer for the last 2 years.

Bout all you really can do,,is wait,,check into Hospice and spend as much time as you can with her.. Ask all the questions you have'nt yet,,talk to her about her childhood.
Things like this just suck,,cause you have to wait,,and teh waiting and watching is what does the damage.

 

Never leave anything unsaid but above all else, make it a positive thing in your life. Some can never move past the ugliness, others will begin living everyday with a greater degree of purpose. It's not just about what you want for them. It's also about what they want for you. Good luck on the journey

 

Thank you guys for all of your prays and wishes. I really appreciate your advise.

 

I wish I had words to comfort you. My sister passed 30 days after she was told she had Cancer, she was my only sibling and lived 2 houses from me, we were close all our lives. 18 months later my pop passed. A good friend encouraged me daily to continue the restoration I had just started. I really wanted to unload the project just to get rid of it but No one I knew would take it. I worked on it slowly with zero motivation until it was complete and sold it within weeks of being done. Time has passed and now I relalize working on the car was the therapy I needed. stay busy, dont miss a day of work if possible and surround yourself with family and friends.

 

You've heard the old story about "How do you eat and elephant?" (The answer is "one bite at a time.")

You cope with something like this the same way -- one day at a time.

Talk about her life when (and while) she's able -- what was school like, how she met your father, all the good things she remembers. (You might want to keep a journal of all this.)

Focus on her life, not her death. If bad things only happened to bad people there wouldn't be much freedom in our lives, we would all be slaves to a higher power.

I was the only one of 7 children to spend much time with my dad. I was the oldest son and therefore started working with him on the farm when I was 10 or so. While driving to where we needed to work sometimes he'd tell me things about his early life or things that had happened to him.

One day, I remember, he told me he'd like to be cremated and scattered of the farm he had rented all his adult life. When he was nearing the end (from Alzheimer's) I was able to explain that to my siblings and they accepted it as dad's wishes.

To me it doesn't matter what gets you "through the night" (Frank Sinatra reference there -- he said, "Booze, broads or God, whatever it takes to get you through the night") because you're the only one making the trip.

And you can choose to be angry or sad or to celebrate her life and how she has touched eternity through her children.

And know that you are her link to the future -- be careful how you carry on her legacy.

And consider the wisdom in the prayer/poem below.
I know it helped me when I was far enough "around the bend" to see I didn't want to go any further.

The Serenity Prayer

God, grant me the serenity
To accept the things I cannot change;
The courage to change the things that I can;
And the wisdom to know the difference.

Reinhold Niebuhr

 

This is a sad topic. I'm in the same boat. My mom is 74 and she gets around, but requires a walker. It sometimes seems like every day she's worse, but she's a fighter by nature. I'm the only one of four kids who doesn't have a family, so about a month ago I got rid of my house and moved into her place. It's a large house, so it was the logical thing to do. She wouldn't want to be in a retirement home and none of us kids would have allowed it anyway. She gets around, but sometimes I have to help her out.

There are days that are worse than others, but we take it in stride. I have grown a lot closer to her and we have talks like we never had before. It's hard to sometimes face the reality of her being gone one day, but I'm a realist and accept it. My advice is to take each coming day as a blessing and make things as comfortable as possible.

Before my dad passed, he told me to not cry for him being gone, but to be glad that he was going to see how things were on that other side. He was funny that way. My mom is too. She says that what comes, will, just enjoy things while you can, so you don't have any regrets later. That has been my philosophy for a long time. I don't sweat what was and don't sweat what may be. Each day when I get up is a new slate and I choose what to write on it.

So make her happy. Be all that she taught you to be and if you have children, instill that value in them. Keep the cycle going.

 

As a longtime agnostic, I can recommend "When Bad Things Happen to Good People" by Harold S. Kushner, a rabbi of your former faith. It helped me through some tough times. vic

 

My mom beat cancer and she is not alone. We all go through difficult times but they all pass. Talk to friends and family members. If that doesnt help you will need a councellor to talk to. Just remember that even with the most ferocious storm there is a bright day and the sun will rise...Remember, talking helps to clear it out, dont keep it inside or it will build up and blow out like a cork from a bottle...Hope this helps.....Dave

 

In this kind of a situation, faith is certainly important. But there is also this: I see these situations as lik being in a little boat going down a roaring, raging river. You cannot paddle upstream, BUT YOU CAN STEER THE BOAT. You are not in control, but neither are you helpless. (you will find all of life is like this, difficult times just make it clearer). If you ask God "why", you'll never get an answer, if you rage against the "unfairness" of it all, you will become bitter, but if ask "will you help me", He will. There's been a lot of good, healthy advice already given-use it - you don't have to waste time reinventing the wheel here. Others have gone before you and know what the journey looks like. Find them. God bless you and your family.

 

Sorry to hear. I lost my mom and blame myself for not being part of the medical opptions she had. It's not easy, i sold my home to be with my Dad in hopes and can help there. However i do fear the worse and dont know if i can do it either. But knowing you are there for your mom means alot and she will know you are there. Best Wishes