How to cope?

[Jessica77]

I am new here and was seeking some advice. My Father, whom is 59, was diagnosed with ALS February 2008. Looking back, he started having symptoms July, 2007. He is progressing very quickly and it is breaking my heart to watch. He has lost 25 pounds and walking is getting more and more difficult for him. He just received a brace for his left leg since he cannot feel anything from the knee down and his ankle is very weak. His arms are very week and his hands shake uncontrollably. He is barely able to write. Physically he is falling apart, but mentally, he is doing very well. He is dealing with this diagnoses better than we are. I am having the hardest time with this out of all the family. I have so much anger inside of me that I have never felt before. I hate that this is happening to my Dad and I wish I could take it away. My parents live in VT and I live in NY, so I am only able to visit him 2 weekends out of the month due to my work schedule. Every time I go back to VT, he is worse. I put my happy face on when I am with him so he does not see how much this is affecting me. When I head back to NY, I feel so sad and depressed. Is it normal to feel so angry? My Fiance keeps telling me to get a grip because things are only going to get worse. I fear that if I cannot deal with things now, how will I be when things really get bad. The last time when I was in VT, my Dad fell trying to get out of the chair and I froze like a deer in the headlights. I felt so guilty about this that I had to leave the room and started crying. I am so overwhelmed with all of these new emotions it is really starting to take a toll on me. My Fiance suggested I get in touch with a therapist and talk about everything I am dealing with. I think this may be a good idea so I can get some help coping with all this.

Jessica

 

[brooksea]

Hey Jessica!

Welcome to the fourm and sorry about your Dad's diagnosed.

Getting therapy could only help. It is really very soon after his diagnosed, so over time the shock will wear off and you will be able to accept this part of his and your life.

My husband was diagnosed in Sept. of 06. He is still able to walk, but is having major balance issues. He uses a BiPap at night, and this seems to be helping with energy level. He has lost fine motor skills in hands and his arms are atrophied and weak, but he can still lift things.

He has progressed slowly compared to some, but it still hurts to see your loved one struggle to do the things they once could do unassisted.

Hang in there! I'm sure your Dad appreciates the visits from you and looks forward to seeing you every time.

 

[Rob Kerr]

Hi Jessica

You might want to check if there is an ALS Association in your area, it can help to meet with others who are going through the same things as you are. The diagnosis is a shock but it does get better. Think of possitive things that you can still do with your dad and it will turn it into something enjoyable for both of you..........Focus on what still works.......Take care Rob

 

[CindyM]

Hi Jessica- welcome to the forum. I am sorry to hear about your dad. It is a shock, and hard to take when this happens to someone you love.We will help in any way we can, though. Fee free to ask anything, vent anytime. This is a great bunch of folks and people really care about each other.

 

[shellshell]

Hi Jessica!

Hi Jessica, I am so sorry to hear about your dad. I too know exactly how you feel. I recently lost my dad who would have been 60 tomorrow to ALS. If I can provide any advise Jessica it is this, live this disease with no regreats, no words left unspoken, no time left unattended, love your dad, support your dad, hug and kiss your dad. He will go thru so many stages mentally with this disease so if at some point he seems angry, remember it's the disease he's angry at, not his family. Jessica, just do all you can do to love him and support him. If you ever need to talk please feel free to PM me and I would be glad to help you in any way possible!

Stay strong and know that this forum is filled with the best people in the world! They've helped me thru many many hard times and I am sure will continue to do so!

Love,
Michelle

 

[liz]

Jessica -

The St. Peter's Hospital Regional ALS Center in Albany may be able to assist you. Call 525-1629 and ask to speak with Karen Spinelli.

 

[DeeMichelle]

Hi Jessica I'm so sorry to hear about your Dad he's still young and this can be such a shocking condition. My Dad was also diagnosed with MND/ALS recently. For him symptoms are all of Progressive Bulbar Palsy. It certainly is normal for you to feel so angry. I live just over 100 miles from my parents and I find it really hard coming away from them- I want to try to sort everything out for them. Though my work has been flexible and they've allowed me a load of time to go up there. Like others say therapy may help and give you a place to unload.

I wish you well and hope you do get the support you need.

Dx

 

[bellard]

Find a cause.

Hello Jessica,

Like ShellShell, I also had a mother with upper bulbar ALS. She was diagnosed February 2007 and passed away 09/2008. Mom was 75, and stubborn, and I really did not get that trait from her. We live 600 miles away, and had great doubts of the sibling who stayed local to help. We immediatly joined our local ALS support group, and this forum, and they both have been god sends.

We followed mom's progression as much as we were allowed, researched what was expected and tried to educate the rest of the family of what to expect and what could help make the transition maybe a little easier. There was conflict but we made a point that when we went in, we did what Mom wanted us to do, and only nudged her a little. We always had a long trip home we could scream in anger and cry on so we kept a smile on around mom, and enjoyed what we had.

But as ShellShell said, never let a moment pass of saying what you want and need to say. You have the opportunity and regardless of the desease, and how angry you, your dad, or anyone else in your family is that this monster has attacked, make sure that all loving thoughts, thanks, and appreciations are spoken. That is one gift you have now.

You may also PM me anytime you need or wish. One thing I learned is sometimes the best thing the support group and forum did was validate my feelings, thoughts, and fears as worthy, whatever the reason, because someone has probably been there.

Good luck, and stay strong.
Bellard

 

[rick/Wpg]

Hey Jessica
This is only my perspective - so just throw it into the mix...I am a 55 year old Dad of 5 and Grandpa of 8-(7 of them under 6 yrs old!) and another one on the way
I was diagnosed in Feb of this year and things are moving wayyy faster than I want
Anyhow....guess I just want to say.... sometimes it is just as important to cry together as it is to laugh together as it is to stay strong together! I come from a family where the rule was ' keep a stiff upper lip' but I have found that is not always the answer.....
Don't feel like you always have to put on a brave face! Sometimes the most release - and care -comes from crying or even just tearing up together!
Some of the most touching and intimate times I have experienced have been when the kids and grandkids have let go and wept with me.....my gosh!...if this crappy disease and all it brings with it doesn't make you cry...what will?
Anyhow...sorry for your Dad's situation but remember...he is lucky to have a daughter like you that cares so much!
Stay strong....but don't forget to cry with him - he needs it as much as you do !
Rick

 

[Jessica77]

Thank you all for your kind words and support. I have contacted our local ALS Clinic and will be attending the next support group. I think this will help me and my Fiance deal with this a little better. This disease has devastated my Family but it has also brought us closer. We are sharing feelings and talking about things more than ever. I thank god that I have this time with my Dad to spend time with him and just enjoy being together. I think the reason I am taking this so much harder is due to my upcoming wedding. The wedding will not be as I envisioned, but my Dad will be there. That is what is important. My job has allowed me to take extra time off to be with my Family which has been great. My parents just celebrated their 40th wedding anniversary and it was wonderful to be able to be there for that. I am fortunate to have a wonderful, close family to endure this journey with. Thanks again for all the kind words. It really, really helps

 

[DeeMichelle]

Hi Jessica
I too have found that my family have come together more since my dad's diagnosed. It helps so much to be able to do that and I'm so glad your work is being supportive. My work have allowed me to take time off with virtually no notice when needed and that made such a difference to me. I have been able to tell my dad that I love him and been able to care for him in lots of different ways and I'm so grateful for that. My Dad now has almost no speech and I do miss his voice.

I am sure that your wedding will be wonderful, you know even if not as you would have envisaged.

Best
Dx

 

[witzz]

Hi Jessica,

I just wanted to respond to the fact that you're in NY and your dad is in VT. My mom was diagnosed last June, and she was in MA while I live in NY myself. I, too, visited as often as I could but it was basically every other weekend until the very end (when I was up there for about 3 weeks). For me, too, it was hard to see the deterioration every time I visited. Her decline was rapid. She died at the end of Feb 2008. I just wanted you to know that you're not alone in being a "caregiver from afar." And it is very hard. Having your wedding coming up only adds to the stress. I had some therapy and that helped. Having this forum was also really helpful. Hang in there!

~Witzz

 

[nspoc]

Hi Jessica -

I really feel for you. Your feelings are so natural, but I doubt that that is a comfort.

My best friend lived in Los Angeles when diagnosed, and I lived in Chicago. I cried every night, had nightmares, was in terrible distress. We made the decision together to have her live with us in Chicago.

I can tell you this - the feelings are horrible in the beginning, and much worse when you are far away. I gradually learned that today was OK and not to jump too far ahead in my mind. We prepare for the future but live in the current day - it helps a lot.

Another thing that helped was seeing her every day - the changes are not as startling. I know that is not possible for you, and it makes it harder.

Oh - did I mention Prozac? LOL! This helps keep my mind fom running away with bad thoughts.

My experience is that my feelings got better as time went on. I got more and more used to the idea, and I realized that Pat is still Pat. She is a tremendous comfort to have her in my house. I know that you cannot physically be there - I do not have advice for that. I can just tell you that it was much worse emotionally in the beginning than it is now - even though her disease has progressed a lot.

Get as much sleep as possible, get therapy if you can (since you cannot be with your loved one more often, talking with an understanding person is REALLY helpful) - and get moving. Ride a bike, take a walk - take care of yourself. Join a support group if possible (ALSA, MDA, etc.)

Best of luck - keep us posted - Beth

 

[Jessica77]

I am trying to take it one day at a time, but to be honest it is very hard. I try to keep the negative thoughts at bay, but there are days they just flood my head. I have been feeling very overwhelmed lately. I received a phone call from my Dad last Thursday (while at work in NY) informing me that my Mom was rushed to the hospital with possible heart related issues. Well, I ran out of work and threw my Fiance and our luggage in the car and raced to VT. My Dad really cannot be left alone due to he needs help with everyday tasks. My mind was racing and I was an absolute wreck the whole drive. I am SO lucky to have such a wonderful, compassionate Fiance. He makes every trip with me to VT and helps out anyway possible. I thank god everyday for him. Luckily, my Mother was released the following day. All her symptoms were caused by all the stress she has been under with my Dad's illness. So now, not only am I worried about my Dad, I am worried about her. She is going to talk to her Dr. about getting something to help ease her anxiety. This awful disease is just taking a toll on my whole family.

Dad goes to the ALS clinic Thursday. I am eager to know how he makes out. He is going to talk to them about getting a wheel chair or scooter to help with his mobility issues. I hope they will be able to help him.

Jessica

 

[CindyM]

HI Jess- ALS does indeed affect the whole family. I wish there were words of comfort to offer but sometimes they fail. It is easy to let the troubles fill your head but with time and practice you might learn to live in the moment. At least that wroks for some...Blessings, Cindy