Babe feeling overwhelmed

[babe]

This journey through ALS with my husband is unbearable most days

 

[ARCG]

We understand.

 

[pittsburghgal]

Babe, I feel the same. We will give you all the support that you need.

Sharon

 

[babe]

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.

 

[ARCG]

Mary,

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.

Annie

 

[pittsburghgal]

Welcome, Mary.

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.

Sharon



I

 

[vltsra]

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.

Rant away. We are here.

V

 

[babe]

Good Morning,

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

 

[Becky M.]

“Overwhelmed” is pretty much my normal feeling most days. I’m new to the forum and am grateful to see the support and encouragement that’s available here. My husband is still able to move around by himself and able to be left alone. I’m afraid what it will be like when he has to have someone 24/7. I am very social and my walks & coffee dates with friends are what have kept me sane thus far along with an anti depressant. I try to stay in the moment and out of my head/the future. The days are better when I can do that. Thank you all for being here!

 

[affected]

It is so scary looking ahead, and that's why we tend to just take a day at a time where practical.
However, hopefully you will have some help by hired staff, or palliative care staff and still get those truly important little breaks to be yourself, walking and with friends for coffee while someone is with your husband.
Identifying now what is really important to you, and making it critical that you take those times for yourself now, will really help ensure that you always factor these things in. This is part of keeping everything sustainable, and keeping you recharged and is smart thinking and planning.

 

[Weltschmerz]

Good morning from me, too. We’ve been at this for just under 1 year now and unfortunately seem to be in the latter stages of the disease. The difficulty I found was/is the balance between preparing for something to come, while still coping with the present (and of course mourning the very recent past). Breaks have been crucial but I haven’t always been able to leave the house, which for someone in their 30s with few commitments/responsibilities until now was quite the shock. Anyway, some things that help at home are that I’ve started to find cooking a bit of a creative outlet: podcasts, music accompany me while I try things out. And yoga videos on youtube if I can’t get to a class. I’d echo other comments about keeping things sustainable and allowing some time to recharge, however (and wherever) that takes place.

 

[ecolon58]

I am a new member here. My husband was diagnosed in June of 2016. This year has been the toughest. We had to get a van, a power wheelchair, an I gaze computer. I too go downstairs to get christmas decorations and see his workshop that he has not been able to go to anymore. I am dealing with construction now, having the garage changed to a handicap bath and bedroom. We have a split level and going up the stairs on a chair lift is getting very much impossible. I would have retired this year, but can't now. Won't be able to do all the traveling we wanted to. I have two great children, 28 and 32. My daughter just go married on Dec. 28 and my husband went down the isle in his power chair. My son stood him up at the wedding and my daughter held him for their dance. At least he got that. My son is expecting in February. There is always good things to look forward to so I try to concentrate on that. The whole thing is overwhelming and you have to try to take it a small piece at a time. Now I am trying to find an aide to replace the one I had to let go. That's another ordeal. It helps to know you are not alone and these discussions really help as well as my family and friends. Everything changes and this won't last forever. We just have to try to make it through as best we can!

 

[jonico]

This whole thing is wildly challenging Babe! The fact that you are on here sharing your heart and looking for community tells me you can do it. You will do it. Several others have already shared much of how I feel in their responses to you, and I could probably write a book...so I will spare you :-}.

Two things from me: First, do all you can to stay in a positive mindset, as awful as it is likely to be. Second, I have found it very helpful to treat every day like a week. The whole grind of the day from when my wife awakens to when she falls asleep is the work week. The time I steel for some peace and quiet before I fall asleep myself is my Saturday. The time in the morning when I read the paper and have some breakfast (and often clean up from yesterdays left over mess) is my Sunday...and then the work week begins again. The only thing I am missing are the the vacations. They'll come again one day, but for now I try hard to find a way to enjoy as much of the work week as possible. You are brave. Hang in there.

 

[jonico]

I would add that it helps to think of the ways we are fortunate or lucky in our community. Throughout this ordeal, I have been very thankful my wife is still 100% my beautiful wife inside, even though her body is shot. We encounter a wonderful elderly woman often as we walk in the park near our house. She is pushing her husband in a wheelchair. He clearly has some substantial degree of dementia and is quite oblivious to his surroundings, including his loving wife.

 

[ARCG]

That is a good way of looking at it. I have always said the years fly by but the days are long. I divide the day into ‘shifts’. I now get my coffee before getting my pals up. And in the middle afternoon, after he is fed, etc., I take a ‘break’ before I start second shift, dinner, etc, After he goes to bed, that is my time to myself, I usually read for a while. I am lucky, he is still sleeping through the night for the most part. In the early days, the worry kept me up, but now I usually sleep through the night, unless he needs something. One day (or week) at a time.