Life update

[RSV Aus]

Hi everyone,

I haven't posted on this forum in over a year now and I've been missing it in my life! My dad was diagnosed with ALS 2 years ago (age 57), and it was around mid-last year that I discovered this forum. It allowed me to connect with people also affected by the disease, who understood what my family and I were going through and vice versa - even though most of you are halfway across the world! Haha. I've missed receiving (and giving where I can!) support, advice and much-needed words of encouragement. So I'm back!

Dad's condition has deteriorated in that time... It's amazing to think that this time last year we were touring around Europe with him! It was the best trip ever and I'm so glad we did it when we did!! He was able to walk then, slowly and with a limp. Now he's in a wheelchair and we use a hoist for transfers because he can't weight bear. He needs full assistance with showering, dressing and feeding. He can't sleep flat because of breathlessness and he's started aspirating so he mostly eats soft food and drinks slowly through a straw - but we're thankful that his breathing and swallowing difficulties are still in the early stages.

I was doing okay for a while... emotionally I mean. I'd come to terms with things, was just trying to focus on the positives and living day to day. Until a few months ago when I had a miscarriage It was my first pregnancy, and we were all so excited! FINALLY we had some good news and something to look forward to! But life never quite goes as you plan. That was really hard to deal with - and was made even harder by the fact that very soon after, I found out that 4 of my relatives and closest friends are pregnant. It was like being kicked when you're down. I was and am honestly soooo happy for them!! But I can't help thinking how unfair it is... don't I deserve that happiness too, especially given everything else that's going on? Doesn't my dad deserve to see and hold a grandchild? Doesn't my amazing husband deserve a ray of sunshine in a life he could have never imagined when we got together 10 years ago? I try to tell myself that I need to get over it, that these things happen in their own time and there's nothing I can do about it - but it doesn't help. I just keep thinking about it and I don't know what to do.

Oh gosh sorry for the ramble! I started out with the intention of saying a quick hi update, and ended up pouring my heart out! haha. I guess that happens on this forum. Thanks for listening/reading. I hope you all and your loved ones are doing okay

Sending everyone my thoughts and best wishes,
Ruhie

 

[Manhattanite]

Hi Ruhie, welcome back. If there is one thing I have learned here is, as you say, that life never goes as planned.

I am so sorry about your loss. You are grieving, which is completely normal. You don't need to get over it so soon, it was a traumatic event. Allow yourself to feel what you feel and think what you think. In my own grieving what I have learned is to pay attention to my thoughts and to distinguish between thoughts related to loss and the sadness that comes from that, and thoughts that have to do more with self pity and fear, which I think are a little separate from grieving. On top of everything you have had to deal with your dad's progression, so it is not normal times...

Good luck and I wish you much strength and peace.

 

[Jrzygrl]

Ruhie ,

Glad you have found your way back here. This forum has also been a great resource for me. So sorry about your father's progression. My husband seems to be in a similar place. He can no longer walk, so he is in a power wheelchair. We are also using a hoist for transfers. He has also lost most of the use of his arms. He just turned 58 this past summer. Have you gotten anything to support his breathing? My husband uses a Trilogy at night and it helps him breathe better.

I am so sorry to hear about the loss of your pregnancy. Please allow yourself to grieve. I was in the same position years ago. I lost my first pregnancy right before Christmas. We were so excited! And then crushed. It seemed that we also had many friends that were pregnant at the time. It was hard. But God does have a plan. I became pregnant again and had a beautiful baby girl. Today, she is a wonderful 22 year old college graduate starting her first job. I went on to have 2 more miscarriages before having my second daughter. She is now a 20 year old college junior. Sixteen months later, we had our son, now a 18 year old college freshman. I truly believe that these are the children I was supposed to have and that some day I will meet the others in heaven.

Wishing you peace.

 

[affected]

Ruhie, I'm sorry for your loss. I'm also sorry I don't remember you but you must have been coming here under another name before because this post shows as your first post here ever?

 

[soonerwife]

So sorry to hear of your loss. That is so devastating. My husband has just became immobile in the last week. It's a hard pill to swallow. I am glad you found your way back. We definitely understand the devastation of this disease.

 

[RSV Aus]

Thanks everyone for your replies! It really does help talking to people who understand what I'm going through.

@ Manhattanite: thanks for your advice! It's interesting you mention distinguishing thoughts related to loss and grief versus those related to self-pity and fear. I think I managed the sadness of the miscarriage itself fairly "normally" - I was devastated of course but unfortunately miscarriages are common and usually things work out okay in future pregnancies... plus at the time dad's deterioration was a more immediate priority, so in some ways it was a bit of a distraction. But it was when other people around me told me they were pregnant that I started thinking how unfair things are, which is different to the sadness I felt associated with the loss of the pregnancy. I don't want the self-pity sadness to linger!! I guess it will just takes time to accept the way things are.

@ Jrzygrl: thanks for your words of encouragement. I'm sorry to hear about your husband.. it sounds like he's in a very similar condition to my dad. How are you coping? We haven't used any devices for his breathing yet, but it sounds like a good idea! What's the Trilogy? Also thank you for sharing your story about your past miscarriages - I'm sorry for your losses but I definitely agree with your philosophy. I'm sure things will work out, I just need to keep reminding myself that

@ affected: thanks for your message. Yeah I was surprised it said that was my first post! I'm pretty sure it's the same username, but the website format has changed since last year so maybe that's it? Anyway I'm glad to be back!

@ soonerwife: thanks for your message and I'm sorry to hear about your husband it is definitely hard to see a loved one deteriorate in this way. When was he diagnosed? How are you coping?

 

[soonerwife]

My PALS was dx'd Oct '15. I am coping... I am not sure how well. There has been so much going on with my family and job, some days I just want to get in the car and drive far far away...

 

[RSV Aus]

I was playing chess with my dad just now. He loves chess! He's always been really good at it and he's also super competitive haha. He was beating me easily at first and it seemed really obvious he was going to win. Then somehow I made this epic comeback and ended up winning! I played a great game but at the end of it I came up to my room and started crying. How many more chess games does he have left? Shouldn't I let him enjoy winning while he can. I feel so guilty even though I know it's just a game.. One day I know I'm going to miss playing with him and would give anything to have today back when I could have let him win.

 

[Atsugi]

When my child beats me at chess, it makes me proud that I raised him well. I bet your dad is quite happy whenever you are better, faster, smarter than he is.

Thanks for returning and opening up to us. In my many years, I've learned (finally) that life isn't fair--it is what it is.
I also learned that we rarely get what we deserve. (Thank God for that.)

Cry from time to time. I am. Thanks for this conversation.