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califsand

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Hi all,

I haven't come in here in a while because I thought I was maintaining pretty well. My father has suffered from ALS for about 6 years now. In fact, the first time I noticed something was wrong was on my 31st birthday when we went to dinner and his speech was odd and he explained he was having trouble talking. He actually asked me to order his meal for him! So strange to have my smooth talking father be afraid to talk. I went home that night and cried for 2 days straight because I knew something was very wrong.

Eventually he got his ALS diagnosis and I've watched him suffer from up close and personal ever since. Through it all I have been by his side. It was hard at first, his pride made him push me and others away but I turned out to be stubborn just like him and eventually we learned my role in his life. After a while when he obviously could no longer live alone, he moved in with me. After that became too hard for both of us, I moved him to Hospice. He's been there now since October and I usually visit every evening. He's now bedridden and on oxygen, constantly congested and can barely even move his fingers at this point.

This weekend is my 37th birthday and as it gets closer I get more and more depressed. It not only will be the 6th year anniversary since I noticed Dad had something wrong but it is the day that HE always has made my special day. I was born on my maternal grandmother's birthday and that side of my family pretty much ignored my birthday so my father would always take me away and make it special. Even as his illness progressed he would still celebrate it with me, spoiling me with little sentimental gifts, his attention and other little things that made my day. Last week I was chatting with him and asked if he knew what date it was and he made a no gesture so I told him the date and he laughed and pointed at me. I said "yes, it's almost my birthday" and he started sobbing. That's how I feel! I plan to go spend some time with him on that day and bring our favorite cocktail that we used to drink together to celebrate things which I will squirt a shot into his feeding tube but it all makes me so sad. It is the most horrible thing to see him helpless and in a hospital bed, all skin and bones, unable to move or communicate well anymore... this is not how he wanted to be and it breaks my heart.

After 6 years you would think that I would be used to this by now!? Well, I think that most times I am pretty strong and I try not to be selfish but sometimes it just hits me, like now, that I'm losing my Daddy! I'm the person that supervises his care and then communicates things to the rest of my very large family so I don't usually allow myself the luxury of getting sad. It is too hard to be strong when I feel sad!

I'm not looking for advice today, just wanted to share that with people who know what it is like to be in my position. I know that everyone in this group is watching and caring for someone in my father's position and you understand the painful ups and downs. It's like a roller coaster! I'm thrilled to see him smile and he is always so happy to see me, even if I go every single day. But at the same time I want to tell him that it is okay to let go... I just can't bring myself to tell him that even though I know it is time for him to do it. The counselors feel that him being able to move on is partly contingent upon knowing that we will be okay, that I will be okay, after and they say that I need to let him know it's okay. I prepare myself for that talk every day and I cannot bring myself to follow through. I just know that my birthday will mean nothing without my father to share it with and at the same time it will mean everything because of the memories he helped me to create...
 

brooksea

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"it will mean everything because of the memories he helped me to create..."

I'm very sorry about your Dad. You've said it all in your sentence above.
 

Al

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Hi there. Most of us here know what you are going through. Just when you think you've got things sorted out in your mind and are at peace with things something like this comes along and blows things all to pieces. You are not alone. I'm not sure what else I can say but being the father of a daughter your age I think I know the love he feels for you.
Al.
 

hopingforthebest

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Happy birthday from us all

I am putting my arms around you for your Dad and hugging you so tight for your birthday!

Your memories will keep you going and I promise you someday you will be able to laugh again when you remember all the great times with him.

I pray that you have someone you can cry with and if not, please come and share with all of us.

Love
Patty
 

Icanmanz

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califsand, my heart goes out to you. Jeeez, I wish I knew where to begin. I do remember your posts from the past, I also remember when you moved your Dad to hospice. He is so strong, because he is still holding on, God bless him. I read your entire post, and believe me, I know what you are going through. I am sure you know that I lost my 38 yr old son to Als, it was a year ago on June 3rd. I still feel the pain, it will never go away. My son, like your dad lost a lot of weight. It was so hard for me to lay eyes on him. There were times when I would leave the room, only to let the tears flow, and feel the pain. Bless his soul, he was always so concerned about me, he'd always ask me, "Mom, you been cryin, eh? Thought we had made a deal." I did not, and could not smile for a very long time. It wasn't until after my son departed that I got my smile back little by little. Nothing mattered to me. Day in and day out my son and this terrible illness was always on my mind. I'd go to bed crying, and I used to wake up crying. I cried so many tears. All I can say is God bless these Cals and Pals. It is such a helpless feeling. I never before knew what it was like to feel helpless, and it is a terrible feeling. I am keeping you and your Dad in my prayers. God bless, and keep us posted, and yeah, it was nice hearing from you folks!

Irma
 

califsand

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Thanks you guys, I'm having a really hard time right now.

2 years ago my father planned his suicide (he picked July 16, 2006 as the date) and announced to the family that he was not going to allow himself to become bedridden and unable to communicate. He invited them to town for a "farewell weekend" and people came too, from all over the country. We had a great weekend with him, he cooked for us (with lots of help) and took lots of pictures of us all. Then we got together for brunch on the last day, he gave us each pictures and other momentos and we said our goodbyes to him. That was the first time I had cried in a long time, I had accepted his choice and with great effort, so did everyone else but when he hugged me that last time I lost it. That night we all sat at my house waiting... he emailed us and said goodbye, he was going... and we cried. I called his Dr. to ask how long it would take for him to pass away from a drug overdose and he said that we should honor his wishes and not go to his house until morning. So we waited together and a couple of hours later Dad emailed me that he couldn't go through with it, he didn't want to leave his family. It was bittersweet and the reactions from people were mixed, of course. We all prepared ourselves for it and then it didn't happen. Under it all though was relief, none of us wanted to lose him.

In the 2 years since then I had a lot of quality time with my father and the majority of it was positive, he's become my best friend. Nobody can make me laugh or cry like he can. In fact, hardly anyone else can make me laugh or cry now, I think that most of my emotion is reserved for him. That can be really frustrating because I have a large family that I have always been very close to and they feel neglected or like I'm only halfway there when with them. I can't help it, Dad owns my sense of humor!

2 weeks ago I got a call from Hospice to come quick, that my father was very ill. They told me to call my siblings also. I went and he was sicker than I've ever seen him, vomiting almost constantly for a 10 hour period, high fever and trouble breathing. They gave him hourly injections to try to sedate him and calm his body and it didn't work. Eventually we dosed him with large amounts of valium and morphine and he finally had some relief. The Dr. and I met the next day and he told me that it was probably only a matter of days before my father would pass away, his organs were shutting down. I took time off from work, talked to the family, prepared my son and tried to prepare myself. I sat at his bedside for 12 hours a day and on the 3rd day he rallied and stabilized. Now, although he is still very ill, it feels like we will continue to ride this roller coaster forever. It breaks my heart. I want to hold him close and run away at the same time.

I know that these feelings are natural for someone who has been the primary caregiver for a long time. I teeter between being happy that I have had such a great relationship with my father and wishing that it was someone else he depended on. I have several siblings but none of them had made ANY sacrifices for him while I have sacrificed almost everything. I am pretty worn out. I live in fear of my telephone and am getting to a point of having to drag myself to see him because I am afraid of what I will find. I don't even know if I'm scared to see him worse or to see him better and stable. Him stabilizing means that his torture is prolonged and that I have to continue the agony of watching him slowly waste away, a man full of thoughts, humor and great stories... a man who cannot move or communicate most days now.

I printed out a bunch of funny and wonderful pictures for my dad, all 8 x 11 and plastered the wall under his tv with them. I realized afterwards that many had him in them. They show him as healthy, strong, vibrant... surrounded by his kids, taking photos of the sunrise, working as a handyman - doing what he loved. I needed those pictures up there because I don't recognize him anymore, I don't want to lose him and be left unable to imagine what my Dad was like "before ALS", you know? So I put up the pictures without thinking about it and now I'm glad I did that. I can tell he is too. The nurses are astonished at the change in him over just 2-4 years and they tell him how handsome he is. The kids look at pictures of their strong grampa and I think that they are less scared to see him all shriveled up in the bed.

I'm sorry guys, I know that this is a long and nostalgic vent but I'm just feeling really hurt by things right now. I really miss my Dad. I had a nightmare a couple of weeks ago that my son was killed in an auto accident and when the police came to my door to tell me they asked if they could call someone for me and I said "yes, I want my Dad" and then I fell apart. I woke up sobbing. If something really did happen to my son I couldn't tell my Dad about it, what point would there be in breaking his heart? He has always been the one to make me feel better and I can't lean on him anymore. Totally selfish, I know. The good thing is that he taught me to be nurturing and his lessons have helped me to be there for him and to survive thus far through this hard experience. He is in everything I do....
 

msde302

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Califsand-

My heart goes out to you. I'm 34, so very close to your age. I was the sole caregiver to my mom who passed away last month from ALS. Of course, I can't say that I know what you're feeling, but I think we've had some similar experiences, seeing our parent suffer and feeling helpless and sick with worry and regret. My mom died so much sooner than I thought would happen. I was nearly bonkers with lack of sleep from caring for her the week that she passed away. And I still cry thinking about those stupid moments when I wanted a break or when I was away from her side when she was sleeping. And I remember everyone on here telling me to savor every moment. I knew they were right, but it seemed so abstract. And now, what I wouldn't give for just one more day, one more hour to be with my mom to say all of those things I felt too awkward to say.

God, it's so difficult to see our parent suffering. It's the sort of thing I thought I'd be doing thirty years from now, not at this age. My only advice for you is to keep doing what you're doing. Laugh with him. I love that you put those photos up. Eat up each minute with your dad.

You're in my thoughts.
Kaija
 

califsand

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. Bless his soul, he was always so concerned about me, he'd always ask me, "Mom, you been cryin, eh? Thought we had made a deal."

Early on my Dad made it clear that he couldn't handle people crying about his illness. I made him and myself a deal that no matter what he told me I would keep a straight face and be strong. Fortunately I have experience with this... and it worked. He pushed everyone but me away because they would cry when they saw the wounds on his face from falling, they would get flustered when they couldn't understand him or if he got frustrated. I gave him 100% of my attention when with him and no tears and it paid off. I got time with him when nobody else did. We traveled to New York so he could show me where he lived as a boy and took me to Niagara Falls. We made many trips around our state on his "photo shoots" and countless trips to the casino he adores. We ate, while he still could, anything he wanted... and we watched Law & Order for hours on end while he told me stories about his life.

We planned his funeral, picked out his plot at the cemetary and went and drank screwdrivers on the plot while he laid down and "tried it on for size", all the while having me take pictures of him. What a day that was! My father could make anything humorous no matter how real it was. Unfortunately his car broke down when we pulled into the cemetary and we had to call my brother for a rescue. My brother pulls up and sees Dad laying on his plot...making sure that he will "fit". His sense of humor is so twisted but like I said, nobody else can make me laugh like him. My brother was a bit horrified to say the least and the look on his face to see us having a little party and drinking on Dad's future grave was classic. My father helped me plan for a singer to be at his service singing his favorite song, we have had his tombstone carved except for his date of death (that was done about 3 years ago), I know exactly who he does and doesn't want there, what he wants us to wear, what day of the week, who is allowed to speak, etc. He needed someone to trust and I was there for him. He asked me to be responsible for him when he no longer could be and we got the documents drawn up and notarized. Only recently have I used the Power of Attorney card and it felt so strange to do it but I knew exactly what to do because we had talked so extensively about it. I have 100 pages of emails from him full of silly conversations and serious ones, all invaluable pieces of my relationship with my father.

Tonight I cried but I haven't cried in front of my father in two years and before that it had been many years. I'm not supposed to grieve for him while he is still here, that's our deal. And after he is gone he wants me to think of him with humor and love, he wants me to send the spirits of roadkill to him to keep him company. He's a pretty strange guy but I sure do love him.
 

califsand

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Califsand-

My heart goes out to you. I'm 34, so very close to your age. I was the sole caregiver to my mom who passed away last month from ALS. Of course, I can't say that I know what you're feeling, but I think we've had some similar experiences, seeing our parent suffer and feeling helpless and sick with worry and regret. My mom died so much sooner than I thought would happen. I was nearly bonkers with lack of sleep from caring for her the week that she passed away. And I still cry thinking about those stupid moments when I wanted a break or when I was away from her side when she was sleeping. And I remember everyone on here telling me to savor every moment. I knew they were right, but it seemed so abstract. And now, what I wouldn't give for just one more day, one more hour to be with my mom to say all of those things I felt too awkward to say.

God, it's so difficult to see our parent suffering. It's the sort of thing I thought I'd be doing thirty years from now, not at this age. My only advice for you is to keep doing what you're doing. Laugh with him. I love that you put those photos up. Eat up each minute with your dad.

You're in my thoughts.
Kaija


Thank you Kaija,

Posts like yours remind me of how many who have ALS pass away quickly. Sometimes I think it would have been better for my father and everyone if his disease was that quick. I have tried to savor my time with him and consider that each visit may be the last, for years now. I know this has enabled us to have some great quality time together and I wouldn't take it back.

I know what you mean when you say you felt regret for needing breaks, we all need breaks and feel bad for it but you were there for you, you should have NO regrets! It is amazingly hard to go through this at our age, I also didn't expect to have to care for my parents while still raising my son. My father is only 59 and about to become a grandfather yet again in just a couple of months. That's why he is hanging in there, to see his first born son finally become a father. The baby is a boy and has already been named Thomas, after my father. Each evening I pull down the ultrasound picture of the baby with his thumb up (just like his grampa who uses thumbs up for everything positive) and we laugh while I talk about what a stinker he will be like his gramps. I've promised my father that the baby will know his grampa, I'll tell him all the good stuff and make sure he has pictures and presents each year that are from his grandpa in heaven.

I treasure him and the moments with him, I really do. It's the constant worry and stress that eat me up! I have a fear he will pass away on my birthday, which sure would be symbolic but terrible. Then I think that if he passes, it will be a relief to know he is no longer enduring this torture. It's been going on for years now, I just don't know how he can take much more of it.
 

Icanmanz

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califsand, bless your heart, you have been through so much. My heart goes out to you. You and your Dad are in my prayers. God bless................

Irma
 

Icanmanz

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califsand, I liked this post! Your dad sounds like a pretty cool guy, and there is nothing wrong with him planning his funeral. My son did the same, he told us what he wanted, and how. We had music at the funeral home, and we had a nice lengthy video of him. Some people thought it was kind of odd, but hey, if that's what he wanted. He just wanted one big celebration, at the end we passed T-shirts with pics of him, in his memory to a lot of attendees. If you are going to make a funeral out of tears, out of tears it will be. If you celebrate you departed's new eternal life, it will be joyous. I am not saying I didn't cry, yes I did,, but I was seeking peace and comfort. I was ready to send him Home, because I could not stand to watch him fade and suffer. He is Home! God bless you!

Irma
 

califsand

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califsand, I liked this post! Your dad sounds like a pretty cool guy, and there is nothing wrong with him planning his funeral. My son did the same, he told us what he wanted, and how. We had music at the funeral home, and we had a nice lengthy video of him. Some people thought it was kind of odd, but hey, if that's what he wanted. He just wanted one big celebration, at the end we passed T-shirts with pics of him, in his memory to a lot of attendees. If you are going to make a funeral out of tears, out of tears it will be. If you celebrate you departed's new eternal life, it will be joyous. I am not saying I didn't cry, yes I did,, but I was seeking peace and comfort. I was ready to send him Home, because I could not stand to watch him fade and suffer. He is Home! God bless you!

Irma

Irma, I think it is odd but wonderful too. He doesn't want a church service, graveside only and it's only about a mile from the beach so he wants us to wear shorts and be casual. He has already asked someone to sing "Groovin" and has given me instructions on how we are to celebrate his life. I know there will be some tears and I'm scared of that part. I am hoping that the shock of losing him will let me grieve hard for a few days so that by the time we all gather I can maintain my composure. Everyone looks to me, even my older siblings. For Fathers Day I gathered my neices and my stepdaughter and taught them one of me and Dad's songs. We went and sang it to him for Fathers Day and he laughed and cried the whole time. It was great! I have talked to the children about maybe singing it at his funeral, if we can handle it, to honor him. They know it is an option if we don't feel too sad to sing... and that it may help others to feel a little better. We are really open in my family and in times like this, it helps.

Thanks for your support. Coming here tonight was a good idea, I really needed to vent and to hear back from those of you who know how I feel. My family doesn't get it. If I get depressed and they can hear it in my voice they get really scared and then they see that as a reason to get depressed too. Thing is that I spend most of my time being strong for all of them, once in a while I would love to lean... I just can't lean on them because it makes them feel guilty for not being more involved. Then I feel guilty for trying to talk to them because it makes THEM feel guilty and sad. Sigh! Anyways, as you can see this is a valuable place to come to on days like these and I thank you all for being here! :)
 

brendapals

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califsand,
Girl, my heart goes out to you. When I was 17, my mother was having some dizziness/balance problems. After 3 hospitals, she was finally diagnosed at Barnes in St Louis with MS. She quit working about 3 months after the diagnosed and did pretty good at home with a cane for 13 yrs.

Then she had a fall that broke her right ankle. She had worn a heel-toe lift type brace on her right leg for several yrs at that point because of the weakened state of those muscles. The bone never healed. She spent the next 13 yrs flat on her back, in the nursing home, with a catheter. Not what any of her 4 children had picked for her, but she never once complained.

I had 2 older brothers who visited rarely, and a younger sister that would visit only when I went with her. I can relate to the mixed feelings of guilt that you talked about. Many times when she was in the hospital, and the nurses called all of us in, I would sit in a chair and wonder if it was OK to ask God to take her home. I could never tell my siblings what I was thinking, because it was just too awful!

She passed away on Valentine's Day of 2003, peacefully, at the nursing home. I was sitting at the foot of her bed, talking to her for about 4 hrs that morning, writing out checks, just shooting the breeze, and she wasn't speaking. I guess maybe that was something that God wanted me to do, because to this day, it brings me such peace in my heart to remember that day.

My sister couldn't understand why the funeral home didn't have to really ask that much- I had already preplanned all that for my mother. Then she didn't know why we didn't have to pay anything-yes, I had done that too. Then she balked when we went with my younger of the 2 older brothers to pick out a "Kentucy wildcat blue" dress for my mother. She asked "why do we have to buy something that costs $200?" I thought to myself, of course, how can you ask that when it is the last thing you will do for your mother?

Well, of course, now I'm rambling.

So in April of 2003, after my oldest brother had returned to Virginia Beach following our mother's funeral, he was diagnosed with ALS. He died in May 2004 and, at his request, his body was donated to science, and his wife had a memorial service about 2 weeks later. When I told my sister I wasn't going to ride in a van for 15 hrs with her family, all she could say was "good grief". I guess I realized at that moment she might possibly be the most selfish human being on the planet.

So of course, when I was diagnosed on 6/3/08 with ALS, all she said was "good grief". She lives about 4 miles from my house and I have seen her once since my diagnosed. Not sure what this all means, but please know that it is healthy to vent to all of us.

And also know that God will bring you peace in your heart when He is ready for your father. I have the most wonderful memories of my mother, prior to the 26 yrs with MS, and actually even more wonderful memories after her diagnosed.

Thanks for listening,
Keep the faith,
brenda
 

califsand

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Aww Brenda, bless you! You were there for your mother and you'll always own that. I'm sad to hear that you lost your brother and that you are now ill as well. :(

One of the things that is worst about my father being so ill is that it makes me feel vulnerable and has shown me how fragile life can be. I look at my siblings (3 older brothers, 3 younger sisters) and I know that it would devestate me to lose any one of them. Of course we are all still relatively young with 3 in their 20's still, two of us in our mid to late 30's and the other two in their early 40's... but still.

Thank you for sharing, hearing about others experiences brings me a reality check and a reminder that it is not okay to feel sorry for myself. I know that some of my sadness is pure selfishness... I miss my Dad, I miss my freedom, my goals for this part of my life have all been suspended or completely tossed out the window. I had plans to travel extensively and they had to be postponed, every time I leave town my Dad gets sick. I finally enrolled in college and had to take a break because of the emotional wear and tear... and I had to take a break from the business I am starting up for the same reason, I need to be able to run when the nurses call. I can't live my life and maintain any type of quality because all quality goes to him. I think that is what is hardest, finding balance without abandoning him. There is nobody here to pick up my slack, you know?

Regardless of how hard this week has been I know that I will stay strong for him and won't let him see how badly I want to run away. I get nervous now before I go see him but that all fades when his face lights up into that beautiful grin that belongs to me! :)
 

lostinlouisville

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Califsand and pittcrew

I am truly sorry for everything you both are going through. It sounds like to me I need to pray that both of you get a little more help and compassion from family members. Pittcrew I live in Louisville I can understand the Kentucky blue dress even though I am a cardinal fan. Sometimes people can be so careless with their words during a time of grief, and we just need to let it go. When my dad died, I prayed not one more person would come up to me and say something totally stupid. My dad killed himself and everyone wanted to tell me how o.k. that was, well, it wasn't. Pittcrew, I don't know how far you live from me but if you need anything let me know. I will be praying for you,Califsand, I can not even imagine how hard it is going through what you are going through. I pray that you dad has peace and comfort everyday. It sounds like you need some good friends to help you through and you came to the right place.
 
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