I am new to the ALS forum. My name is Mary, my husband was given the horrific diagnosis on August 24, 2018. 15 months in and everyday becomes a new challenge. So many questions and no answers. When you get this news it is 2 people that has the disease, my husband and myself. Days are long and nights are restless. I went from wife to caregiver in the blink of an eye. I too married a really great guy and say everyday why my guy? Decisions to make sooner rather then later. Looking for an electric wheelchair, finding someone to do modifications to our modest small rancher. Buy a wheelchair accessible van. My head is spinning, and feeling so overwhelmed with all the decisions I have to make and accepting how every small minute thing in our lives will never be the same. Thanks for letting me rant and I will hopefully draw some strength from reading all of the posts of the wives who are experiencing all these same feelings. Can someone out there tell me how you get through each day without losing your mind and yourself.
So sorry you have to go through this, I can tell you my experience and others will share theirs as well, I am sure. It is like two people having the disease and the planning does seem to fall to the caregiver, at least in our case. One thing that helped me was not to jump to far ahead. I figured out what we would need in the next few months and concentrated on that because I was getting overwhelmed with the enormity of it all. We live in a city, so there were a couple folks who came out and did an assessment of the house and made suggestions. For example we did a Shower Buddy instead of remodeling the bathroom and that worked for us. I heard the The Steve Gleason foundation may help with a similar system now, idk. Also, there are swingaway hinges for doors that make the door open wider for wheelchair. They are available on Amazon I think.
It’s very hard, there’s no getting around that. A friend gave me a little book on mindfulness just with some quotes and that has helped me a little when I start to go down the rabbit hole. Also, trying to trust myself and knowing that I am doing the best I can and can’t do any more than that.
You will find good advice here from some great folks, who know more than me, Rant any time you want.
The two things that have helped me get through the day are this forum and prayer. Just knowing that other CALS totally understand the challenges we face helps. Whenever you are feeling especially overwhelmed, you can come here and talk to us. There is tremendous support here and good information, so if you have questions, don't hesitate to ask.
There is a great subforum here called "Tillie's Trees" with wonderful pictures of koalas. I often look here to get my mind off ALS for a short time.
I also start every day praying for strength and patience to get through the day.
Some days, nothing seems to help. Then I just try to believe that tomorrow will be a little bit better.
Hello Mary, welcome. We understand how overwhelming this illness is. I don't think anyone who hasn't dealt with ALS really understands the level of caregiving required. I'm at a similar place now, we are getting an electric wheelchair, I will need to sell my PALS' truck and buy a handicap van, working on a construction project to be able to get him in and out of the house which required me to clean out the garage and the closets upstairs single-handedly. I understand about the decisions...I'm having to manage the construction and it is not something I have ever done before. If I'm not doing hands on caregiving I'm spending my "free" time making sure his needs are met by getting the equipment or projects we need. I do have caregiving help but not 24/7.
I started taking an antidepressant when we began this journey 4 years ago. It helps me to be a little less emotional although the feelings still come through. Like Sharon, I ask every day for patience, courage, and strength. Sometimes I need more of one than another.
I've had to give up a lot of my dreams - I've always loved traveling and my PALS promised me one day we would do things together (he was very wrapped up in his business). I guess that wasn't meant to be. Shortly after my PALS was diagnosed I started taking art classes. I knew I would need something to feed my soul while I am unable to travel and must be here at home most of the time. It is really helpful for me to do something creative that takes me away from my sorrows.
I am amazed at the overwhelming response and support that I have received from just one post. Thanksgiving was a wonderful day at our house, family all around us, it was humbling. Our children and grandchildren struggle with seeing their father and dad dad/grandfather with all the new challenges he faces everyday. Our grandson Blake, summed it up in a few words, It must really be hard to be Dad Dad and try to walk and look up. He is only 11 years old but he has so much compassion and empathy.
Started getting out our decorations for Christmas. So difficult to go down in the storage room and then look at my husbands work bench and see all the projects he will never finish. The poor guy cannot ever go down into his man cave again, it is so unfair. I will decorate as I do every year but on a much smaller scale. My heart is not into any of the celebrating that comes with the holidays. Trying to keep life as "normal" as possible is getting tougher everyday. Thank you so much for listening to me and sharing your own challenges. It is like we are all living the same exact life. I used to feel all alone but now I can finally talk to people who can totally understand what everyday is like for us CALS. Babe