Old 04-28-2017, 01:04 AM #1 (permalink)
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Post Where's My Light?

First off, hello everyone! This is only my second post to the ALS Forums. I have read/lurked a bit over the last ~6 months, but have stayed quiet while trying to process everything going on around me.

To sum up my story as a "caregiver"... My beautiful wife and I married back in 2014 and had our first and only child in Nov of 2015. In May of 2016, she started having some weakness in her arms and trouble breathing. After a couple of months with no improvements, we decided to have her checked for ALS. Now, normally ALS wouldn't even be thought of, but it runs in my wife's family. She lost her dad when she was about 5 years old. He was 29. In total, there have been 32 ALS cases in her family (8 more unconfirmed) since roughly 1860. After 2 specialists and a genetics test in October of 2016, it was confirmed that she has ALS.

Since then, life has been rocky... My wife is a stay at home mother to our daughter. I also work from home, which is a major blessing. I don't have a set schedule but I do have several meetings through out the day. I spend my nights now doing my "busy work" since my days now consist of help my wife and tending to our 17 month old daughter. I average about 4 to 6 hours of sleep a night... but I lately, i'm exhausted. Worse than the physical fatigue is the emotional factor. My wife seems be getting more and more angry. I don't blame her, but I get the full force of it. When her mom stops by for a visit, she sometimes leaves in tears because of how cold my wife has become. It is 100% pride! She refuses to have anyone help her even though I have to help her do a lot... Dress, bathe, stand... I have begged her to let someone help us with the normal, everyday things around the house... to take some of the weight off my shoulders. Working, being a caregiver and doing everything around the house... trying to sleep... I feel I am about to lose my mind.

So, instead of working, I have decided to start figuring out how to bring some joy back into our lives all while not neglecting anything around the house... So, thank you all for being my source of truth and ideas. I really feel that my health has slipped lately. Chest pains, headaches, all of the above... How do you convince someone to let someone help out? I can understand not wanting to put our daughter in daycare.. She doesn't want to miss out on anything.. But is a couple of hours twice a week really missing out? And what about the anger and depression? I don't want our remaining time together to be like this.. No one likes fighting with someone they love. I honestly feel like she's purposely pushing me away...

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Old 04-28-2017, 03:31 AM #2 (permalink)
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Default Re: Where's My Light?

Hi, Somerset, sorry that you find yourself here and for your wife's dismal family history. I don't see any way that you will be able to care by yourself for both a toddler and your wife as the disease progresses. There are many reasons why your wife may be withdrawing and we have discussed them here before: mental and physical exhaustion, loss of empathy, cognitive impairment, denial, anger, thinking that she wants things over with and/or that you do, etc.

I would say to her everything you've said to us, and try for one change at a time. But you will need to be clear that change must occur, and if she doesn't participate, it's going to happen without her input.

She is losing everything at a time that many young newlyweds/parents are achieving their early dreams. It's very difficult, as I'm sure FALS and other younger P/CALS here will attest. If she has a trusted friend, relative or professional, it might be time to leverage that person without her feeling ganged up on.

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Old 04-28-2017, 08:21 AM #3 (permalink)
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Default Re: Where's My Light?

What's the best approach? How do you get someone to compromise while understanding what not compromising is doing to the caregiver? I want us to spend every minute we can making lasting memories with our daughter. She may be young, but I am recording/documenting everything we do together. I don't want to spend it stressed and arguing.

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Old 04-28-2017, 08:32 AM #4 (permalink)
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Default Re: Where's My Light?

Hi,

Please forgive the intrusion.
I am sorry you find your family in this situation.
I also apologize that I do not have any real advice about how to make your situation better.. (none that I am at liberty to give here anyway).

I will say, however, you mentioned day care a couple of times a week.
To me a day care can be a cesspool of germs, viruses, bacteria and illnesses.
A young child is extremely susceptible to all of these things and can, if infected with any of that, bring it home to your wife.
Your wife needs to be kept away from potential illnesses which may compound her existing problems; particularly since she is already having breathing issues.
I know that we cannot avoid all risks unless we are completely shut off from the rest of the world, but we should do our best to reduce them.

If you and your wife agree that a few days a week of daycare for your child would be in everyone's interest may I suggest that you look into a private sitter rather than a daycare situation...
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Old 04-28-2017, 08:49 AM #5 (permalink)
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Default Re: Where's My Light?

If you could have all the help you wanted what would it be? Who would be providing it? Aside from the daycare would it be paid or friends/ family?

There are so many things that could be playing into her attitude. Aside from Laurie's list there is a need to keep things the same - related to denial but slightly different.

The easiest things to start with are the things most removed from her. Lawn service, grocery delivery, then house cleaner. If you are planning to hire services could your MIL or another relative " gift" a couple of house cleanings perhaps as a Mother's Day gift to her ( you can reimburse surreptitiously). Another possibility is to present the worker as someone in need of some extra cash. This might work if a friend of a friend

Daycare is a tough issue. Germs are a big deal but I see a lot of benefit to your daughter. She needs some normalcy. Being an ALS kid is hard. Very hard. 3 is actually better than older I think but still tough.

I honestly don't think PALS should get everything their own way to the detriment of the family. I hope she can see your side.
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Old 04-28-2017, 08:51 AM #6 (permalink)
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Default Re: Where's My Light?

Quote:
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To me a day care can be a cesspool of germs, viruses, bacteria and illnesses.
Yes and this is exactly why she has not been in day care, ever. I use that term lightly. She would actually got with family.
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Old 04-28-2017, 08:55 AM #7 (permalink)
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Default Re: Where's My Light?

I guess I should add... Her family and our church family is begging her to let them come help.. Anything... They just want to help so that we can spend our time making memories. I have already hired someone to do some of the things I normally take care of.. Yard work and vehicle maintenance.
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Old 04-28-2017, 09:35 AM #8 (permalink)
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Default Re: Where's My Light?

Ryan, I am do sorry to hear about your wife's dx. It is hard on everyone.

My PALS doesn't like anyone to come over. He has a dear friend that volunteered to clean our house and he didn't want her to come. I told him it would help me... and he agreed.

I think lack of empathy is something that alot of us see from PALS. I'm not sure why that is?

You have to have help. It is impossible to do alone. I would tell her that. Your health will suffer. You must take care of yourself so that you are able to take care of her and your daughter. If it were me, I would have the conversation. Maybe she would allow her church family come in and give some help?

One last thing that worked with my PALS who has always been a giver... He has always love to volunteer and help others. I told him that allowing them to help is bringing joy to them just like he feels when he helps others. If he doesn't allow others to help, he is not allowing them to feel that joy.

In order to have time to spend as a family and make memories, you have to have help. I hope you find a way of convincing your wife of that?!
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Old 04-28-2017, 09:53 AM #9 (permalink)
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Default Re: Where's My Light?

I was actually talking to someone yesterday.. Her cousin.. She is taking over our church's drama team and I have been doing some stuff to help her promote an upcoming event. I work in software and am skilled in a lot in the tech world. Our church uses my skills often. We were talking about trying to get my wife to help with the "creative" aspects of a drama ministry. My wife is an amazing artist so it would be a good fit. Convincing her of that is the problem. She's pretty bummed out that she can't draw or paint anymore.
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Old 04-28-2017, 10:05 AM #10 (permalink)
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Default Re: Where's My Light?

I hope you can get her to agree. We PALS desperately need to feel useful and contrubiting I think. I know I do. She may think it is just a made up job if she is resisting. Or is she depressed ( understandably)?

Sooner's point about allowing people the joy of helping is important and real

Good luck

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Old 04-28-2017, 10:15 AM #11 (permalink)
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Default Re: Where's My Light?

I do feel that she is depressed.. I mean, who wouldn't be... I know I am... Many people from church have told her they are doing it for the joy of helping. We have a few that bring us food from time to time and thats a big help. It allows us to sit down as a family and eat instead me having to cook, clean, feed the baby and at some point eat. It's little things like bring food that make a huge difference but she doesn't see it that way.
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Old 04-28-2017, 10:26 AM #12 (permalink)
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Default Re: Where's My Light?

I know someone who is FALS whose neuro handed over a prescription for an antidepressant along with riluzole when she was diagnosed. I think this was slightly excessive but lots of PALS and CALS do take antidepressants. If you have not , something to explore. Not everyone does this, I don't and neither did my sister. If your wife won't do it you may want to for yourself.

How does the dropping off food work? Unplanned it arrives? Can you do a schedule? Meals are a big help. My sister had a lotsahelpinghands website sign up for them
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Old 04-28-2017, 11:00 AM #13 (permalink)
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Default Re: Where's My Light?

I also have a lotsahelping hands account. I have about 50 volunteers that have signed up to help. My best friend is the admin. I tell her what I need, an email goes out and people sign up.

My problem is being proactive...
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Old 04-28-2017, 11:19 AM #14 (permalink)
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Default Re: Where's My Light?

It's normally planned out pretty well in advance. I will keep that site in my though. I was actually going to develop an app or build a website for everyone to use if/when its gets worse. But hey, no sense in reinventing the wheel

As for the anti-depressants, she was on them before the baby.. However, after the baby and even before the diagnosis... she wasn't able to take them anymore. In her words, "this baby rewired my whole body..." I haven't thought about taking them but may give it some thought.
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Old 04-28-2017, 11:48 AM #15 (permalink)
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Default Re: Where's My Light?

Oh, I am so sorry for your dilemma. I actually think this is pretty common--the refusing help from a pals in the beginning and only wanting it from their main cals. it is not that she wants to run you ragged, but she just hasn't come to terms with everything going on in her life. just getting married and having a baby makes most women a little crazy--put ALS in the mix and YIKES!

You cant go on until you drop--the road ahead of you is only going to rougher. it is wonderful that you have lots of people asking to help and you need to take them up on it even if your wife doesn't want you to do so. I suggest you start small--a meal chain, a house keeper once a week, a lawn service, a babysitter once a week. lotsa helping hands is a great website, or if you have a close friend who can set everything up. you may want to tell helpers in advance that she is resistant to help and may be angry at them, but you are appreciative and know it is the disease not her that is not thankful. I believe that eventually she will come around and accept the help your family needs.

my husband and I both used anti depressants and they were very helpful. we were both against them but eventually just couldn't take it any more. they drugs gave us back some happiness and joy and we both wished we had done it sooner. My husband was very resistant to help also and very much in denial. Honestly, when I look back I don't know how I did it all, but I did. it hurt our relationship though and that you want to avoid. I got to the point where I became hysterical and said this is just how it has to be or I am going to end up dropping dead before you, and he complied. we had to start small, but it was good and at the end He had constant help and was very kind to everyone who helped him.

Maybe you could set up a weekly date night for the two of you where the baby goes to a friend's or grandma's for a few hours and you guys go see a movie and out to dinner, or watch a movie at home and have a candlelight take out meal. also, perhaps you could get a nanny to come in to the house during the day for a few hours each day while you work. then you could get some things done, and hopefully your wife could still be with the baby but have someone with her to help. the "nanny" could certainly help in small ways with your wife and you would be there for the big things. I am sorry, I don't know how disabled your wife is at this time.

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