What will you do after?

[JennyC]

Have any of you thought about what you will do after your PALS is gone? What will fill your time? What will your life look like? What do you WANT it to look like?

I had planned on spending the days I normally spend taking care of my mom and using them to hang out with my Gram, unfortunately Gram died 2 months ago...wow, I can't believe its been two months, seems like it was 2 days and yet 10 years at the same time....

I've decided I'm going to sit down and put some thought into what I want my life to look like, I'm going to live with intention. I will give myself a week after the funeral to stay in pajamas and watch TV all day and then I will rejoin the living.

I'm not quite sure what I want my life to look like yet, I know on special days that we would have spent together I want to do for others, whether it means paying for someone else's meal or volunteering.

I think its important to have an idea of what you want to do after because I'm sure after, if there is no plan, there is a lot of floundering and a lot of feeling lost. I don't think this will take it away completely but I do hope it will give me a direction to head.....anyone else have a plan?

 

[Narrowminded]

Jenny - I've often thought about what would I do after. Part of me wants to get a tiny home and just go live in the country somewhere and be alone for a while. Enjoying the outdoors and just being me. I guess that partly comes from the length of time I have been at this. Brian first started having symptoms when we were both 42, he was officially DX when I was 45 and he was just about to turn 45, trached/vented when I was 48 and I'm now 54.

I love my husband a lot, the thought of losing him still pains me greatly, however I'm tired, mentally, physically bone tired. I think thats why I want to just go off somewhere.

I often think that there won't be a time after. I guess we are to the point of being lulled into a comfort zone. No real changes going on, just existing. It's hard.

I also don't think we knew enough about the vent. We went to clinic one time and the Dr. presented the idea of a trach and told Brian to think about it, no rush. Then pulled me aside and said think fast, he could go at any time. I knew he was bad and had spent that spring doing all the funeral preplanning alone. Brian refused to help at all. I bouoght cemetary plots, bought the insurance policy you buy when preplanning your funeral. Had to pay Brian's over 1 year as we were not even sure he'd still be here. I'm sure he would have gone during that year if no vent. We made a quick decision. I don't think he, I or the kids ever thought it would give him an additional 6 years. Not sure what we thought really.

So future at this point has no specific plans as I have no clue when future will be.

It's interesting, not many on here chose to vent, but the FB page I'm on, lots have chosen to. I asked about how long was your PALS on a vent. Answers ranged from 6 months to still going at 17 years.

Hugs,

Sue

Other than having time to recoup off somewhere, I haven't thought much about what else I'll do. Given that if it happens soon, I'm too young to retire, I'll probably continue on as I am for a bit. I'll have to work. ALS is expensive, if nothing else.

 

[Atsugi]

It's great to have a plan, and new direction. I know CALS who went on vacation just a few weeks after their loved one passed. I think most CALS mope around depressed for longer than they "need to."

One warning. I suggest not making big decisions for a very long time afterward. I bought a house, a car, a European vacation for my family of 3 (PLUS my boy's girlfriends), quit my job suddenly, and started helicopter lessons. Fortunately, I stopped myself while I was in an RV lot looking to buy.

 

[gooseberry]

I second Mike. Try not to do anything important for a few weeks. I am having memory issues since this past summer. It seems like my head is empty not needing to remember everything for Steve. I am being worked up for a stress issue. The psych I saw said to stop doing whatever is "work" and do things that bring me joy. It has been so long that I have forgotten how to do things for me, to take care of myself.

-10 months out from Steves passing, we are still trying to figure it out. It is very,very difficult. I was so relieved when he passed because he was in such a terrible place but now I really miss him.

Making a plan may work for you, but for us, the plan is not working out so well.

 

[scaredwifetx]

Sue, funny you say tiny house. That's what I told Steve I wanted someday. One near the water. Steve found a website that is all tiny houses for sale.

To be honest...its just to hard fot me to think to long or hard about my future. The first thing I plan on doing is sleeping and then putting the house up for sale at some point. That's all I can seem to even grasp right now.

 

[JimInVA]

I, too, have given much thought to this. Unlike Mike, I do think I'll be doing the RV thing. In fact, I've pretty much narrowed down what I plan to order. I know I want to just "leave" for a bit. I love the ocean and am (was) an avid surf fisherman. I would like to touch that again. In my youth (I am an Eagle Scout), I did much camping in the woods, mountains and the Olympic Rain Forest. I love the outdoors and would like to rediscover that (likely from the comfort of my RV).

And I'm hoping that I'll have the strength to remember what being a full-time CALS is like... and can find the motivation to match my desire to find someone, somewhere, and drive my RV to them. To sit with the PALS and allow their CALS some time to care for themselves. Time to sleep... or shop... or visit a friend... or to just escape for awhile.

And while I think I might do well entirely on my own, I recognize how much I value good friendships. I'd hope to surround myself with friends "who get it"... who understand that drama is unnecessary... that there's more to life than worrying about the things one can't control... and who seek reasons to smile, laugh and whose selfishness is their desire to feel the warmth that comes from giving some unexpected kindness to another (without the other's knowledge of the source).

Reading what I've written, I again am reminded of the fact that I can be "a dreamer". But I've always been so... and it has always served me well. So, in summary, I'll find the greatest reward and return for just being me...thankful for my past and curious about the future yet to be...

Jim

 

[JennyC]

I second Mike. Try not to do anything important for a few weeks. I am having memory issues since this past summer. It seems like my head is empty not needing to remember everything for Steve. I am being worked up for a stress issue. The psych I saw said to stop doing whatever is "work" and do things that bring me joy. It has been so long that I have forgotten how to do things for me, to take care of myself.

-10 months out from Steves passing, we are still trying to figure it out. It is very,very difficult. I was so relieved when he passed because he was in such a terrible place but now I really miss him.

Making a plan may work for you, but for us, the plan is not working out so well.

I have OCD so making a plan is a bit of a coping mechanism, makes me feel like I have control in situations where I actually have none.

But I don't mean a rigid plan, I mean things like I want to add yoga back into my life and that sort of thing.

 

[affected]

Particularly when the PALS is your life partner all I can say is you can plan but you won't have a clue - the grief is nothing like you could imagine.

I never really thought about it, I was too busy running to keep up with Chris's rapid progression, but it's been nothing like anything I could have imagined.

 

[Atsugi]

I, too, have given much thought to this. ...thankful for my past and curious about the future yet to be...Jim

Not enough UpVotes available to express my agreement with your dreams. I'm a wannabe Eagle--we moved before I could qualify. I loved the Western Washington area, sailed frequently on Bellingham Bay.

I think your attitude and plan are the best, Jim.

 

[diagnosed2016]

Thinking about the after is so hurtful because I know it's not just me who will be hurting. I have to help our children get through it and raise them on my own. I imagine I will sell our house and move to a new one- he wants me to, but I have no idea if I will want a new start or want to hold on to our memories here. And then I guess I wait around for 40 years to see if I have to live through it again with the kids. I'll never be rid of this disease

 

[KateEmerson]

I have been thinking about this question a lot and have been very fearful about what will happen to my mental health. The loss of my other half, the aloneness, and the loss of purpose in my life. I am afraid to wake up the next day to a life of nothingness, a huge vacuum with only grief to fill it. For the last three years I have never woken in the morning and asked myself want I want to do that day, the care of my PALS has defined each day and has been all consuming ( he has many other major medical issues in addition to ALS). In addition to the amount of basic daily care, the number of emergencies( the latest being a " flash pulmonary edema" ) has left me completely spent and in a constant state of hyper-alertness and anxiety.

So what will I do? My thoughts have included buying a small RV to leave immediately for a extended road trip and , when I get back, a small house in the country as I want to reduce all " care" demands. If this experience has given me anything it has been a sense of purpose and learning that I must have it in the future. I am thinking that I want to help ALS families. I am not a natural caregiver so I think I could be of more value helping people get what they need to make their daily life as good as it can be. As I have said to many people, trying to figure out what we need and the time and energy trying to get it has been almost as exhausting as the care for my PALS.

I find it so interesting that a number of you had similar thoughts and feelings to mine. Another reason that I so love this forum! It's the caregiver support group that I had spent two years in our area looking for.

 

[scaredwifetx]

Kate, I so admire your strength. Our lives are so consumed with constant worry.

I guess I am just to different and independent. All I can think about my future is actually getting back to living it. I miss my scuba diving, traveling, days on the lakes, and love of life .

Don't get me wrong, I know the loss of Steve will be very hard and the time I have spent in this ALS world has forever changed me. I think most of the changes are for the better. I have become a more caring person and have a new appreciatuon for life. Steve fell in love with me because of my strength and love of the many treasures this world offers.

The loss of my biggest cheerleader will break my heart but it's very important to him that I really live each moment I have left. Its weird, but so much of the joy he has had...since I met him was watching me accomplish so much. He loved seeing the sheer joy I found when diving, zip lining, parachuting and traveling. I lived and loved hard without fear.

I have no concept of where or what I am going to do but I do know I will do my very best to live and love life again. I know in my heart that he will still be right there finding joy in my new adventures.

Now I just need to find a box of kleenex and make it through the day.

 

[JimInVA]

@Mike - I didn't sail in the Puget Sound... but I did do a lot of scuba diving there in my teenage, pre-Navy days. And as far as the "Eagle Scout" part goes... I've learned enough about the person whom I think you are to know that you'd have been one heck of a great Eagle Scout! I will admit that it was not just a highlight of my youth, but of my entire life.

Jim

 

[scaredwifetx]

Well...I find myself right back on this thread. This time I am just posting for myself and feel quilty for even taking anyone's time. I just feel that this forum is the one place we can be honest. You can even just skip on past my post. I just needed to put my thoughts into words. That being said... from the moment I hit the button on my earlier post...I have felt like a fraud.

I have thought a lot about my words and it bothered me all day. The Deb that posted earlier must have been fighting inside to believe I could do what I know Steve would so want me to do.

The truth is...I am no longer the person I was and each day I lose a little more of my love of life. I have no clue if I will ever find her again. The last year of my life has been filled with fear and sorrow...unlike any I have ever known. With the loss of my mother, the losses Steve has had and the losses of so many wonderful people here... my hope of ever finding peace and joy again has been a constant battle.

I often wonder how I will be able to fight the need to just run and hide. How I will be able to think I will ever fit in anywhere. I never imagined that I would be heading into the future alone and scarred.

I question how I will be able to find the same pleasure out in the world after losing so much. The future just seems so scary to me and I have always hated fearing anything.

I hope that I can be the person I know Steve would want me to be. It was because of him that I learned to love and to really live. I felt so very lucky and loved.

So for now... I can't really come up with a plan other then heading to a cabin on the lake, sitting beside the water with some music and a fishing pole...until I am ready to battle back.

Thanks for letting me have another one of my moments. I truly hope that one day I quit having so many of them.

 

[Nikki J]

I am answering here as a past CALS. My mother had a ten year battle. For 1/2 that time my father was also disabled and terminally ill. I distinctly remember thinking in the last couple of years that I was irretrievably broken. Days after my mother died my sister was diagnosed. She died earlier this year

It took several months but I am starting to come out from under. Jenny, if I were physically able I would be doing things like you mention to put my life back together again. If it helps to list the things you believe you will want to do that is great but as others have said don't hold yourself to a rigid timetable. The spirit heals in its own time.