To Teach or Not to Teach?

[Recess3]

I know I’m not alone in wondering the big question that everyone has: how long does my loved one have left in his battle with ALS? I left my teaching position in January to care for my husband in our home, and am now facing an issue in regards to if I can be back in the classroom for the 2013 - 2014 school year. Everyone I ask shrugs their shoulders when I ask for advice, saying no one knows. I know that’s true, but I need to let my administration know soon, so please help if you’ve been down this road and can give me some advice!

My husband was diagnosed first of all with frontotemperal dementia in October of 2010, followed by ALS in August 2011. He just turned 60 years old. Currently he is on a BiPAP night and day. His last breathing test showed he was at 19% in January, but with the dementia the test might not be accurate. I feed him pureed food and thickened beverages, and has lost the use of his speech, legs, and arms, and is in hospice care. Sometimes he does choke while eating. Other things seem to come and go. He drooled heavily, but only for one day. Hospice has him on a morphine patch and he takes Adavin at night to help with sleep. I do keep him in bed most of the time, because he’s also incontinent and moving him in and out of the wheelchair for diaper changes was hard on him. We’re not planning on getting a feeding tube or ventilator (his earlier decisions).

School starts August 1, so anyone up to a little friendly advice? I have four months left. I am grateful he’s such an easy patient. He keeps a sweet spirit and I’m not looking forward to losing him. I just need to give my administration fair warning. Thanks so much!

 

[Ms. Pie]

Only God knows. Everyone is different.

 

[ottawa girl]

I'm very sorry that you are facing such tough times and tough decisions.

Why not accept the contract to secure your spot? I can only assume, should you be unable to return in August, your superiors will understand. And, there will be a newly minted teacher eager to fill in for you. Temporarily.

 

[Recess3]

That advice does make sense. The school has been understanding thus far. Things seem to be happening so quickly with my husband. A few months ago I was struggling with the decision whether to put in a chair lift to get him to our bedroom upstairs, and weeks later he couldn't walk at all, so getting him into the chair lift would have been near impossible for me to do. Glad I didn't have one installed. Being a caregiver can get overwhelming. Not only do you grieve as your loved one declines, but there's a lot of other life-responsibilities that you get dumped with.

I am excited about what I got in the mail today. I ordered a generator so if our power goes out I can still keep his BiPAP working. It's portable, so it only weighs 32 pounds. Hope I never need to use it, but if we have an outage, I'll be glad! :razz:

Thanks for the good advice!

 

[ottawa girl]

I believe CALS have it so much harder, in so many ways. I struggle with that knowledge every day. Sure does suck! Sounds like you are pro-active, but sad that your beloved is now bedridden.
God has a plan for each of us. Discerning it, is the hard part!

The caregivers here are awesome. I bet you can get a lot more support (than I can offer you) from other CALS.

 

[pearshoot]

would you be able to get a reliable caregiver in your area while you are at school and at what cost?if its a wash i recommend you stay with your husband. should something happen while you are at school, it may haunt you for a long time. think you should sign the contract, there will always be a teacher available. i answered the call for a teacher one week before school started and told them i would only stay for one year.

 

[Recess3]

You all have given me a great list of pros and cons. Care giving does suck, but my heart goes out to each and every one of you as you struggle with ALS. Pretty sure I'll sign that contract, but if we get down to it, staying home with my sweet hubby will win out. God's carried us this far, and He'll provide for us til the end. Blessings on all of you, and thanks for helping me sort this out!

 

[rosec]

If I was in your position, I will find a caregiver and go back to work. Plan on getting the caregiver started at least a week before you go back. Believe me, the time you spend away from your PALS will make you a better CALS.

 

[HelenL]

As a PALS, I would also recommend you go back to work, the school can find a substitute if necessary, and you still have to live your life. And it sounds like hospice is already there to help. Good luck.

 

[Katie C]

I agree with those who have answered before me... first, accept the contract, which will keep your options open. Second, if at all possible, bring in a good caregiver (I'm sure hospice has people they can recommend) and give yourself the respite of going to a job you love. Wish I could give you a time frame... that part's impossible. Hang in there.

 

[grahamalex61]

I was in exactly the same position. I am a teacher and took leave from last October until February 2014 (Australian school year starts in Feb). It was always our concern when I go back to work about what to do. However, if it had come to that point I would seek extended leave, which they give us here. I have cared for him 24/7 despite having access to some carers. My partner, Michel passed away Friday April 5, so that will not be an issue. I would have found it impossible to work and care for him. He would have always come first!

I think like others, say you are going back, and wait it out. Surely, they must be understanding if you need more time. But as everyone says, each and every case is so unpredictable and you can only wait; just another lovely curve ball of ALS. I am thinking of you!

 

[retiredmus2010]

I am a retired teacher. During my last year, my husband and I ran around figuring out what was wrong. We began the journey in the summer of 2009 and it took until April 21, 2010 to receive an official diagnosis of ALS from a VERY reputable hospital in Maryland. ( He now reveals that he saw some signs in 2008 and also in late 2007)

I have been his caregiver full time ever since. I watch his slow decline but we do not spend time grieving our dreams. Like your husband he is a good patient with a sweet spirit about him. People who come to our home are inspired by him and his witness to others. He is on a Trilogy vent 24/7 but he gets up and out of the hospital bed via the HOYER LIFT every day. He is confined to a power wheel chair and has lost the use of his legs and some of his arm movements. He can still speak and tell me he loves me and eats my table food even though over a year ago he went through the procedure to get a peg ( we have not used it yet, but I flush it every day with 20 cc of water)

Teaching is a passion of mine but it is also an intense and emotionally draining job. Keep your certification current and sign the contract. Your administration knows of the duress you are under. I am so very grateful for all of these years that I have been blessed to be with my husband. That being said: I am most satisfied with my choice with my career as I taught for 35 years. The burdens and weight of caregiving is more taxing some days than a day in the classroom. At least, you got your 30 minute lunch time. LOL

I think if you devote your time to him, you will have no regrets. I DO EARNESTLY recommend that you find some good sitters, other caregivers, etc to stay with him so that you can leave your home. It is so important to have a respite. GOOD LUCK WITH YOUR DECISION.

The reason why people shake their head at you when you ask your question is: Every ALS patient is so different. God is in control and none of us knows the future.

 

[maryhahnward]

Retiredmus - you speak such words of wisdom. I, too, am a teacher. I left the classroom last June to care for my husband who has ALS. This year I tried teaching online and have found it to be a strain. Teaching = caring. It is difficult for me to care for him and care well for my students. We are all different and for some teaching online may be a godsend; for me it has proved to be too much of a challenge. I am not signing a new contract for next year. I will keep my license current just in case.....

We all have to do what works best for us. ALS is a very demanding disease for all of use - PALS & CALS alike. Anytime we can reduce our stress the better we will be for it. We, like you and your husband, have not spent anytime grieving our dreams. We have created new dreams and are living them everyday with as much gusto as we can.

Recess3 - I hope you find comfort amongst us here and we have given you some food for thought. ALS is all so different for everyone and yet all the same.

 

[Nighthawk]

Just as other forum members have stated on this thread, don't give up on teaching just yet.
You can hire a caregiver and still keep your job, just in case. You never know if you are going to need it down the road.

 

[cubcake]

Hello! We are right there with you....diagnosed FTD 12/10 and ALS 10/11. We have the same diet and loss of mobility. The last time I asked for any sort of timeframe, I was told, "10 days or 10 years......somewhere in there." Our FTD is more progressive than our ALS, at this point. The frustration I feel at not being able to make informed decisions is measurable.

I have been working full time at home (mostly) for about a year now. Because my priorities with regards to my sweet husband's care are aligned with yours, I find doing double duty to be extremely stressful. He always comes first and the guilt I feel for not being able to give work my best effort weighs on me. I think about taking a leave often, but we have other issues that may hinder that possibility.

I hope you find a mix that provides you comfort. Like the others have said, keep all your options open!