My dad has ALS

[dadwithals223]

Hi, my name is Lisa, i'm new to this forum.. My dad was diagnosed with ALS this past Aug. His first symptom was weakening of his right hand and speech problems. It sounded like he had a stroke. He is now living with me as his house is not practical. Since his diagnosis in August he has declined very quickly. Right now he has absolutely no use of his right arm and hand, they are completely dead. His left arm and hand are almost there as well. His walking is really bad, he needs help getting out of a chair. I mean a LOT of help! He walks with a walker, but he's all hunched over, and his right hand keeps falling off the handle. I have to walk behind him and hold on to him. He can no longer do anything for himself except eat. Everything is pureed of course. I have to hold his glass for him to drink as it is too heavy. I bath him, brush his teeth, wipe his butt, shave him and clean the saliva out of his mouth so he doesn't choke on it. I suspect he will not be able to walk at all within a couple more weeks. I am the primary caregiver and i'm totally exhausted! Physically and emotionally!

Hospice was supposed to come and meet with us today, but I called and rescheduled it because he had such a rough night trying to sleep, I knew he'd be tired. But (sigh) does this sound like extremely quick progression or what. Back in September he was able to walk for hours, shower, dress himself, put on his own shoes and socks. It was very hard to understand him though, even then. Now, just 3 months later, he can't do anything. I have to stand behind him and hold him up while he pees! And i've had to make a poster with the letters of the alphabet so when I can't understand him, he can point to the letters and spell what it is he wants. But even that is very hard for him to do. He's almost completely paralized..

 

[Clbrink]

Lisa,

Everytime I hear of a new case on this forum it brings me back to when my husband was diagnosed, I am sorry, it is so hard for all involved. When my husband was diagnosed, we started to look back to almost 2 years and realized that the symptoms started a lot earlier than the diagnosis, I am sure that is the case for most PALS. ALS seemed to progress rapidly upon diagnosis, within 1 month he was using a walker, 2 months later he was in a chair, maybe the power of the mind or coincidence? But there is good news, there are plateaus, and my husband has had several, that have got him to this point. They gave him only two years, we are on the beginning of the fifth year. It seems to be different for everybody.

Being primary caregiver will take a lot out of you, it will push you past what you ever thought you were capable of, it will exhaust you, you will have feelings of guilt. But you will also grow, see many things differently, and I believe you will come out a different person, a better more understanding compassionate person, towards others and hopefully yourself.

My dad always told me keep your chin up, I hated that saying, especially when things were so difficult... But I have learnt to keep my chin up, to count to 10, to smile and breathe! And to take time for me, so I can be there for my husband and children.

This forum is fantastic, you will see how this diagnosis has affected the people here and how it has brought out some beautiful qualities, you will find a lot of support here, welcome.

Tina

 

[MtPockets]

Hi Lisa,
Welcome to the forum. I'm sorry you had to seek us out. Your dad is blessed to have you to take care of him.

Yes, this is fast progression compared to many of us. You need to work with hospice as soon as possible to prepare for what is coming. It sounds like soon he will no longer be able to walk. You need to contact the nearest MDA association or ALS group to see about getting a loner wheelchair and any other equipment you will need in the near future. A good website for more information can be found at:
http://www.als-mda.org/publications/alscare/caring.htm#respir
Another site that may help you is a guide for people who are just learning about ALS and how to care for someone with the disease at:
http://www.extrahands.org/alsprodguide.pdf

I hope this helps you get started in the right direction. Remember, you are not alone. We are here to help you with anything that we can.

God Bless
Capt AL

 

[CindyM]

Hi Lisa- Sorry to hear about your Dad. You have a lot on your plate right now and I hope help arrives soon for you. MT has some great suggestions. Keep in tpuch and let us know how it goes. Regards, Cindy

 

[JAKE]

Lisa, I'm very sorry to hear about your dad. My heart goes out to people like you that are willing to do anything for their parents. Please keep helping your dad and hopefully you will be able to get some help from other means. You will never regret what your doing and I honestly believe that God will bless you for this. May God's blessings be upon you and your dad.

 

[Gina]

Hi Lisa so sorry to hear about your father..I am not suprized that you are emotionally and physically spent.Wow you really have a lot on your plate.Watching your dad deterorate so quickly must be frightning.I am so glad that you are in touch with hospice sounds like you need some help asap.Do you have other siblings to help you or other family members that could help so that you could get some weight lifted off you?This is such a horrible disease.My husband is in the late stages,i think,of als and it is such a struggle somedays that i really think im gonna loose it ...but somehow i get through it and so will you. welcome to the forum and you will find lots of caring supportive people here that you can lean on ......try to hang in thier and hopefully help will arrive soon............God Bless....Gina

 

[Icanmanz]

Lisa, I am so sorry to hear about your dad's condition. God bless him. God bless you , too for being an angel of a daughter. I agree with the other posters, Hospice needs to step in PRONTO! This is a terrible disease, it is evil. My son took a quick plunge towards the end. He went fast. Before I knew it he was gone. He is resting in Heaven now. I miss him, but at least I know he is not suffering anymore. I have learned to thank God for the years that He allowed for him to be with us. May God bless you and your dad. Keep us posted dear!

Irma