Wavering emotionally

[paula-jane]

Sandy,

I totally understand everything you are saying and feeling. You are doing a fantastic job. I hope you find comfort in that at the end of your day.

 

[mndireland]

Sandy,
Do you believe in life after death? Or that there is a God and there is a heaven? I do, my father has been dead for 27years and ive always felt a presence in times of trouble, my mother is now suffering this awful disease. At night i pray to my Dad that he sits with her while she's sleeping and that he looks after her and meets her when her time comes. My mother has never believed any of this and yet lately she asks me am i upstairs when Im not as she can hear someone, i think its him. Anyway what im really saying is that, I believe my dad has indeed watched all of his kids and grandkids grow up, and he continues to watch us. I do believe that the spirits are around us, and that if you ask for help your loved ones will help you, so dont be afraid to ask. It will be sad for your dad to pass, but dont worry he will see your son and hug him when he can, and just think of all the great stories you can tell him about his grandad!
Some people say that maybe we are living in the hell, and heaven is so much better Im not sure i believe that, but I do hope they are going somewhere better.
I really admire your strength, I can only give advice but so far have not had to make these decisions, so your strength is an inspiration.
Take Care

 

[hboyajian]

Sandy, I am so sorry that your father is suffering such pain and difficulty. You are clearly a phenomenal advocate and caregiver for him. That alone is of great comfort to him, I am sure.I hope the morphine pump has eased his pain.

I had a thought I wanted to share with you about the baby, his grandson, soon to be born. Since it will not be possible for him to see the child in person due to the potential for transmitting germs, you could take a photograph, enlarge the image to life size ( or close to it) and place it on his chest like a hug. Maybe this is silly, but decided to share it anyway.

 

[califsand]

Thanks Mary Helen, I think you hit the nail on the head, or struck to the heart of what I'm saying. 9 weeks feels like an eternity right now and I will continue to take it one day at a time and you know, he COULD make it and if he does, I'm sure we will sneak the baby in there to meet him. Maybe the regular pain meds will help make it possible since he won't be in constant distress.

You guys are an awesome support and I appreciate all of you that have taken the time to come on here and talk to me about this. It's not easy, for any of us, especially our loved ones who have ALS. It is a great source of comfort to know that there is a place where I can vent and let it all out and the people there will understand, they will care and they will have real words of wisdom & support. I need this, not all the time but when I do, it is a life saver that you are all here. Thank you

 

[califsand]

Sandy, I am so sorry that your father is suffering such pain and difficulty. You are clearly a phenomenal advocate and caregiver for him. That alone is of great comfort to him, I am sure.I hope the morphine pump has eased his pain.

I had a thought I wanted to share with you about the baby, his grandson, soon to be born. Since it will not be possible for him to see the child in person due to the potential for transmitting germs, you could take a photograph, enlarge the image to life size ( or close to it) and place it on his chest like a hug. Maybe this is silly, but decided to share it anyway.

What an interesting thought! My Dad has always been a photographer, he would love something like that!

I just had a long talk with my Dad's nurse and they will increase his morphine tomorrow. He has been on the pump for a few days and it's not helping much. I hate to see him become sedated to where he can't smile at us but his body is in the fetal position, he has horrible nausea and obvious pain so I feel it is the right thing to do. He is down to 4 oz of jevity a day right now because his stomach is upset and I know that being hungry hurts as well. I have clearly advised the Hospice staff that if we have to sedate him to take away his pain that we should do that. I'm sure I'll keep you posted on how that goes.

 

[freddiesnetty]

I am so sorry to hear about this with your father, it breaks my heart, I remember when my mother had hospice to come in when she was dying of cancer, the only thing they would do is give her morphine suppositories. I remember thinking that this had to be the worst thing I would ever have to endure. I stayed with my mother for the last month of her life. I put my job, family and whole life on hold for her....littler did I know that, that was just the opening act for this, I am curious is your dad on a vent also? I got the peg part, and I thought that you had mentioned suctioning his secretions. Just wondering, my husband Freddie just got a trach and peg on the 30th of June. He really waited to late but wanted to go through with it. Today, i was doing some ROM on him and he told me that he was so thin....He is VERY thin......6'3 and maybe weighs 120. I had to tell him that this horrible disease is still going on just that know his nutrition and breathing is not compromised. Sometimes I think that he regrets all this. I was told that because he opted for the vent that he could go into that hospital and disconnect anytime he wanted....That I don't know how much is true...I am sorry I am just rambling...I hope all goes well and your Father does not suffer any longer...I will keep you in my prayers
lots of hugs,
netty

 

[califsand]

Hi Netty,

This is horrible stuff to go through, for sure. My Dad is also very thin, don't know his weight but I can see every bone in his body, especially disturbing now that he only wears a diaper... he doesn't want clothes and it is too hard to dress & undress him at this point anyways. Dad doesn't have a vent but has the oxygen hooked up under his nose. He's had the peg for a year & a half, his illness now at over the 6 year mark. The nurses use a suction machine several times a day to try to help him breath. Some days they put a thin tube on it and go all the way down into his chest, something that is VERY uncomfortable and scary for him and I absolutely hate to watch!

It's so hard to know what is right or how far to let things go. I sure do love my Dad more than anything and have made tons of sacrifices that I will never regret. I think I'm afraid to let him go, which is what the sedation should allow him to do. Someone recently suggested that my fear of telling him it's okay is because I don't really believe that it is. They said that I think I'm ready to let go but chances are, I'm not. It makes sense. Over the course of Dad's illness he has become my best friend and eventually, my largest responsibility in life. Being there for him overshadows everything else, including me. I'm scared to lose him but scared to see him going through this for so long.

Hang in there, that's really all we can do. We are powerless over ALS and what it does to those we are caring for My mom keeps reminding me of the power of the Serenity Prayer. I'm not religious but love the reality in those words. Acceptance is hard to come by, just when I think I am at that point, another curveball comes along and I have to start the whole process over again.

 

[MtPockets]

Sandy and Netty,
I am so sorry you are going through this. I have lost my mom, dad, mil, fil, in very similar situations. The family was at the bedside when my mother in law passed from cancer that she had fought for over 12 years. She was a sweetheart. I loved her as much as my own mom. She had a wonderful sense of humor. Yet she was in so much pain that the deladid and morphine could not control it.
As she lay there, we each held her hand and told her, mom it is alright to go on now. We love you and know that you need to get past this pain. Please know, that was very hard for us to say, because we wanted her to stay, but knew in our hearts she would not quit fighting unless we told her to let go.
There were about 10 of us family there and we each took a turn caressing her head and hand and comforting her as best we could. We kept telling her it was going to be alright to go on, to let go. She was a Christian and her faith helped her for years to handle what she was facing.
She finally after hours of this gave out her last breath and lay very still. We called the nurse and she said she is gone. We were all crying, hugging one another for about 5 minutes when suddenly she gasped a breath. We were shocked to say the least. The nurse said she is back? She lasted about another 10 minutes and then was gone.
My faith helped me understand and accept all the deaths in our family, as it will my own. I hope you find somewhere in your heart that little flicker of faith and let it grow to carry you through the days ahead. I pray for peace for you my friends and for supernatural faith to be in your hearts.

 

[califsand]

The Dr. doubled Dad's morphine yesterday evening and when I went and hung out with him it was nice to see him actually comfortable for the first time in ages. He was somewhat sedated but not too much to a point where he slept the whole time I was there. We watch Wipeout together on Tuesdays, which has him laughing his head off. He would doze during the commercials but when it came back on his eyes would pop open and he would laugh and laugh. His face lights up when he smiles and it was good to see that even though his meds were significantly higher, he was awake enough and alert enough to enjoy himself as well as share some of his beautiful smiles with me. I'm hoping that with the increase in meds he will be less anxious & afraid now that his pain & discomfort are reduced. Last night was a relief for sure.

 

[CindyM]

This is a relief to hear! I was so hoping htat you and your Dad would get some stress-free time together. Hugs, Cindy

 

[freddiesnetty]

I am so happy that your father is feeling "comfortable" I looked at your family album and what a nice family yall have.....I hope the best for yall. My prayers are with your family daily..God bless you!
netty

 

[califsand]

Thanks everyone!

We upped his meds yesterday, again, valium this time. He is still not comfortable! I got a call during work from the nurse yesterday that he had spiked a 102.4 fever and didn't want to bed fed or suctioned all day. She said he was especially uncomfortable and ornery but who could blame him? My pregnant sis-in-law had talked of going to see him and I called to warn her about the fever and she insisted that I meet her there anyways. I wish I could properly express the look on his face when he saw her and she pulled up her shirt to show him that huge baby belly (she is due Oct 5th). We were hoping to try to get his hand on her belly to feel the baby kick but the baby was napping! I think between the nurse, the aide and myself we could probably get him into some position where we could get his hand there. Hard to do because his muscles have pulled his arms against his stomach and his legs won't straighten out anymore. We still plan to give it a try, hopefully over the weekend.

While we were there the nurse took Dad's temp and it had reduced to 99.4, whew! He still wasn't feeling good and I don't know if the pnuemonia is starting to get the best of him or not. He has refused to allow them to test or do xrays, his theory is "what's the point?" Hopefully we will get to a point where he is comfortable soon. I don't know if we can do that without heavy sedation at this point though.