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Atsugi

Moderator emeritus
Joined
Jan 11, 2011
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5,921
Reason
Lost a loved one
Diagnosis
12/2010
Country
US
State
FL
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Orlando
We CALS are stressed by conflicting expectations in our dual roles of spouse and caretaker. Perhaps some things would be easier emotionally if we were all professional medics, and we could see our PALS objectively as patients.

We must keep our spirits up, even if our PALS are emotionally defeated. ALS will win physically, but we can win spiritually.

In my own case, I was lucky. My mind can be objective to some degree. I'm a data-driven guy, so I researched ALS and caregiving online, did a lot of planning on paper, and filled out a lot of forms preparing for each stage of Krissy's life and death.

But also, all along, from Day One, I planned in detail for my kids and me to survive afterwards. I guess that gave me a more objective perspective and made me feel proactive. I had to remember that ALS was taking only one of us, not all of us.

Because Krissy had a very rapid progression, I had little time each day to reflect and be emotionally overwhelmed. In that, I admit my situation was different from most.
 
Thanks for this interesting post Mike. It is so difficult to keep our spirits up. Watching my husband suffer has very nearly broken me on occasion. I find solace in my belief in God and that this will not be the end for him and he will be at peace one day. I find it very difficult to think of a future without my husband in it because I feel that it is not fair to him. The other day I thought how nice it would be to do a road trip with my daughters down to the Cape along the garden route (we live in South Africa). It was such a lovely day dream. Then reality set in and I felt terribly guilty about imagining a life without my PALS. It is like being stuck between a rock and a hard place - on one hand I want my PALS suffering to end but on the other hand I don't want to lose him; on one hand I dream of a normal life but on the other hand I don't want a life without my special man. I am very interested in what details you planned for you and your kids to survive afterwards? It has been something I have thought about but don't know where to start without feeling bad!? I believe that it is so important for my daughters that I do so. Any input you have will be so helpful.
 
... what details you planned for you and your kids to survive afterwards?

These are my experiences to show how a CALS can plan and succeed through ALS.

First, before the illness, I realized that my wife was our primary income provider, so I made my smartest move by insuring her to the maximum. All our lives we think insurance is not needed, but fortunately, I worked out the cost versus benefits, and insured her, just a few months before the diagnosis.

When Krissy was diagnosed. I researched ALS and how to care for paralyzed people and suicide and the laws about keeping your job while taking emergency leave. I made a detailed budget to ensure I could live without my wife's income.

I made good relationships with a couple of bankers, so I could get practical advice from them.

We made every effort to live life as normally as possible, going to events, dinners, games, etc. Unknown to my PALS, I always had equipment and paperwork nearby in case of emergency. We had to go to the ER twice for breathing issues and called the EMT's once to pick us up off the floor. I always kept my cell phone charged and in my pocket.

Of course, there were legal documents like Wills and Advanced Directives to attend to. And there were Social Security benefits and veteran's benefits (Krissy was a veteran).

We were also in debt and in danger of being sued. So we set up the life insurance money to go into a trust fund for the kids, so my hands never touched it. The Trustee would take care of our kids financial needs, but the money would not be mine. This protected the money from any lawsuit against Krissy or me.

My first really surprising realization was, "Holy Cow! Girls are waaay different than boys! How can I raise a girl without a mother? So I worked out to have as much female presence in her life as possible: a church, teachers, doctors, girl scouts, and family visits.

(The church was a mistake. It turned out to be what Americans call Evangelical Fundamentalist. They convinced my little girl that mommy was going to Hell because she didn't have enough faith to cure her ALS.)

I realized that my kids needed to be busily involved with their mother, so they could process her illness and death more completely. So over time I trained them to do different caregiving tasks. They helped mom by mixing medications, feeding her, using the cough assist machine, providing oxygen and air, massaging her feet, adjusting her in the hospital bed, and operating the patient lift.

During mom's illness and afterward, I wanted my kids to have a normal social life. So I made sure they continued with their friends and teams. (I should have paid more attention to the friends from church, and should have yanked her out of there.)

While Krissy was sick, I insisted that my son get his driver's license so he could help out the family more. I did more chores than ever, and modified our rented house (with a saw and a sledgehammer) to accommodate the wheelchair. I apologized to the landlady later.

At school, I should have told the teachers that mom was terminally ill. I was initially afraid of calling attention to her, but now I think her grades would have been better if the teachers knew what was going on. When the kids didn't want to go to school, I didn't give them a hard time. They needed a break just like I did.

We always planned on college for the kids. So I found scholarships for them. We encouraged our kids to apply to big-name schools. We toured some nice campuses, and the kids became excited and motivated to improve their grades.

After Krissy died, I introduced my children to therapists, but the therapists said no sessions were needed. They were fine.

Travel was an important part of my life with Krissy, and I knew she would insist on the kids seeing the world as we had done. So during the holidays after our PALS died, we went to Europe. I brought along the kids' girlfriends to ensure it would be a fun trip for them. This helped tremendously. I took the kids overseas for the first two Christmases.

With the insurance money, the Trust bought a new house in a different neighborhood. Unfortunately, my girl had to change schools, and that impacted her grades, activities, and social life greatly. I failed to double check where the school district draws the line between neighborhoods.

I gave away our equipment, bed, lift, wheelchair and such, to other PALS. I get the kids involved in charity work from time to time.

My son had a steady girlfriend who was quite good for him, so I include her in family things.

Whenever I suspected my daughter was depressed, I arranged for something exciting like go-karts or a flight lesson. I encourage her projects: last year she built a canoe and now she's talking about building a sailboat.

I decided to get a new career. (I'm retired military.) So I went to school for healthcare administration, but dropped out from boredom. I then trained in helicopters, but my blood pressure failed the flight physical. Not sure what I'll do next.

Recently, the Trust gave me the house and is paying for the kids to go to college. And although I'm a homebody, I know my kids love activity, so I taught them how to scuba dive and we are taking a cruise for the New Year.

So that's all the planning and activity that has gone into our lives to ensure my family stayed well even after ALS.
 
Wonderful post and topic Mike.

I could not even begin to imagine life without Chris, so I kept myself completely away from thinking about that.

However, I felt that for me, to survive as carer, the key was to give the absolute best care I could to Chris while he suffered.

I consciously chose every single day to stand by my man and look after him - I never felt trapped.

I did similar to you - I researched, I planned in advance, I made sure everything was done to the highest standard.

I also ensured that regardless of my opinions, as much as possible, I let Chris call the shots and make the decisions. Some of them, to me, were very poor decisions. But I accepted the terminal nature of the disease and knew that good decisions would not save him. Good decisions, by my standards, would in fact disempower him more and not therefore make his life better, so weren't truly good decisions.

I thought hard about end of life and how I would want that to be for myself. And I gave Chris a good ending, a good death. If I can die as peacefully as he did, in my own home, being loved, it will be a good death.

I have no religious beliefs, but I have strong spiritual beliefs. I have never looked back and thought I wish I hadn't done certain things, or said things, or that I should have done certain things better. I know that in my heart I completely concentrated on Chris.

At the end of it all, I have peace about how I looked after him. I grieve hard, but I know that I would be a total wreck if I now remembered fighting back at him. He suffered and it was his disease.

You gave me so much at the time I was caring. I read back on many of your posts and on the end of life for Krissy and I knew that I could do this well.

Sure I despaired, I nearly went under several times, it was the hardest thing I've ever done.
But I knew, through my many wonderful online supports that I could do this and I would come out the other side.

It's tragic that as a CALS we know that this is terminal, but only one is going to die and one is going to be left alive. We would trade places in a heartbeat and save our PALS. But we can't, and so we do our best. We pick up the pieces a bit at a time afterwards, but we do pick up the pieces.

You have continued to inspire me Mike as I got to know you more, mostly after Chris passed.

It's one reason I stay here - CALS need to know they can do it, and they will pick up the pieces afterwards.

We never get over it, we are forever changed, but we do have much to live for, and so do our children.

I feel so deeply for all the CALS here, you are all my family xxx
 
Well said, Katrina. I wish there was a "like" button. :)
 
I'll consider my post LIKED Mike ;)

Even though I'm a past CALS I just got so much from your second post with those details of how you thought things through and have cared for your children's wellbeing.

Some things didn't quite work out how you thought, but I'm a big believer in this:
If you start moving in any direction it doesn't matter if it's the right one or not. It starts movement, gets past inertia. Anything then can happen and because you have momentum you can change direction and keep moving.

If you just stay where you are, you stay in inertia.

Often when we don't know what we want, starting anything, and finding what we don't want is valuable in working to what we do want.


Mike, I've see just lately that you are starting some momentum again. OK the cruise wasn't the right one, but now you can learn from that and keep moving somewhere.

Sometimes the 'right' thing is surprising, and we have to be open to it and in a state of movement to find it.
 
What we can do Mike is rate threads, so I've rate this one EX CELL ENT (had to split the word as it sends posts to mod, how dumb is that!)
 
Whether good or bad, while I objectively could , I filled out all the va post death paperwork. Julien is talking about what ee would do without dad. Would we be able to travel etc? He and I talk about the futurr privately about life post als. Somehow it makes the really hard days more tolerable.
 
...I felt terribly guilty about imagining a life without my PALS...I don't want a life without my special man

Unlike most of the others, guilt is a useless and destructive emotion.

I think most of our marriages are probably healthy ones. The partner leaving us would wish for our happiness. A CALS must imagine life without their PALS, and try to plan for it. In return, we do everything we can for our PALS, but we live on afterward, and honor their wishes be doing well and becoming happy again.

Just my opinion, of course. YMMV.
 
For what its worth, my son says dad wouldnt want us to be sad and stressed when he is gone.. he would want us to be happy. I believe , like you Mike, we have to choose and plan for this. reality also.
 
Thank you Mike for such wise words. Yes were is that LIKE button!

I'm so grateful for all the info I read as it does help me understand the reality of what I'm going to go through with our children. Plus Mike I will have an out for my daughter to learn how to drive! She's going to be 16 in Dec and dad wants to show her how to drive but she still hesitates to try it out. Hoping this coming week end we can win her over! Going to the grandparents who have plenty of land for her to drive safely without too many structures!

Tillie I looked at your video for hand massage and it was wonderful, will be teaching myself and daughter how to do this. Having my daughter help her dad in this way will give them time together.

Blessings Alana
 
Poppies, I idendify with your post. It is so hard for me to think about anything but Steve and this disease. It's is just the two of us in Dallas so I will be all he has here to take care of him. I would love to enjoy the time we have left together but Steve does not want to leave the house. Maybe that will change in a month or so.

I know I will stand beside him, carry him when he needs it and take care of whatever needs he has. I do know his number one fear is what his dying will do to me so I am going to plan for a life after Steve. At times it is very hard to imagine any day without him. I have been keeping myself going by dreaming that I am going to walk the Camino de Santiago in Spain. It would be awesome to help me to clear my mind and at the same time a tribute to my husband. It may be only a dream but it's a good one for me. There is a Great movie about it with Martin Sheen and his son. It's called 'The Way'.

Mike and Tille you are both such inspiration and have helped me to stay strong when i have felt very weak. I cannot say how much I appreciate it
 
Mike and Tille you are both such inspiration and have helped me to stay strong when i have felt very weak. I cannot say how much I appreciate it

Ditto that.

You all here have. Poppies, you amaze me--just going to school like you do with a family is tough enough.

Some days I feel like I have a handle on it and other times I'm lost. But it's good to come here for advice and perspective. Someone always has just the wise word.

Feeling grateful.
 
What a beautifully done post from Mike and Tillie! And you did share some of the "afterwards!" I am struggling painfully- far worse than in the first numb months when there was so much to take care of. Now it's reality and I hate feeling so anxious and stressed! I am one of those cheerful, happy, positive people and I don't like the new me BUT do cover up well with my friends who think I am strong and happy as always. Keep telling myself to "fake it till you make it" but the constant heavy chest pains remind me I'm a mess. Doing all the right things- water exercise class 3 times a week, church and extra activities with them, lunch out with friends regularly, cleaning the house, basement, garage, shed---, reading , signed up for grief classes, preparing for Florida (where I'll take my cat for the first time- can't bear to be without him AND her), see family --- but none of it seems to make up for the emptiness of not having him to talk through daily life or to be able to share what's going on with friends, or argue politics with- It's the mundane things that cause me to miss him the most.
And now I'm done with today's cry (probably not!) and my whining and being weAk and tired and unmotivated! (People would never guess how I have to push myself to keep busy all the time, when I'd much rather do nothing and give in to my sorrow.). Thanks Mike and Tillie, for ALWAYS reminding me during these dark moments that SOMEDAY my joy and smiles will be genuine again. But being an impatient person, want it TODAY!
I think daily about you friends still suffering as you watch your PALS die a little each week- and the mixed feelings of wanting to keep them, and yet wanting them to be free and whole again. You are so busy and stressed by being their guardian angels here on earth, it is hard to envision life without them. But when the time comes------it isn't easier- just a different kind of sadness. But I trust Mike's advise, as it is always wise and practical. Sorry I've babbled on.
 
Mike and Tillie, I can't thank you guys enough for sticking around here.

I have been keeping myself going by dreaming that I am going to walk the Camino de Santiago in Spain.

I have been thinking about a long walk too. I have told my children that after their father passes we should do a long distance walk like Queen Charlotte trek in New Zealand or Hadrian's Wall walk. It will help us clear our heads after this arduous ALS journey.
 
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