Old 07-03-2017, 06:42 PM #1 (permalink)
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Default Struggling

Sometimes I even hate to do a rant like this because I feel like I'm whining. It's taken me 24 hours to get up the courage to put pen to paper, as it were.

Yes, I'm struggling. The why has multiple reasons. These are on no particular order.

1) sleep. Hasn't been going well. Mostly due to the fact that I still sleep in the same room with Brian, and he goes thru times when his machines, especially the vent seem extra noisy, even with earplugs to try and mute it a bit. I know lack of that just makes everything else seem all the more intense

2) April. Our little episode has really done a number on me. The kids too, esp DD which makes it even worse on me.

3) Brian being or having become what seems like a spoiled brat. I don't want anyone to take this the wrong way. We all agree that our PALS should be given as much control of their own lives/decisions as possible. However I think that sometimes there can be a detrimental side of that as well. Sometimes they get so used to being catered to that they forget that there is a human, that many times is at the other end of that request, is struggling just to make it through the next hour.

We all acknowledge in many cases, such as mine, their PALS can do nothing at all for themselves and if it were not for a speech device they would basically be considered locked in. We know that we are all they have and it pains our hearts greatly. However many times we feel as though we've become nothing more than a maid to deal with all their becks and calls and get no more respect than the ant crawling across a floor unwanted

I know I'm becoming burnt to a crisp. On wed i will be getting in touch with the therapist that DD has been going to, I know I need it. The trick will be finding a time that I can actually get there. I've been on meds in the past and had to get off of them, they were making me feel worse and I had a very difficult time coming off of them, so I'm not sure about that aspect.

I know I need help, finding a way to get that help is what is really causing issues. I definitely cannot afford to pay someone. If I can get the ACT 150 to pan out at all, I will than have to find someone on my own as it will only cover attendant care and since Brian is on a vent that means no agency will send someone in. That's my next difficult hurtle.

I've looked into a home, I cannot afford that and his disability all on it's own is just above the line needed for Medicaid to ever kick in no matter how much money we would spend down, not that there is a lot of that either. If there was I'd be using it to hire someone.

I feel so stuck, so alone, so burnt out and no where to turn. Not to mention trying to keep a somewhat happy face on for my DD so she will carry forward with her life.

Add to all the above, my back is still giving me issues. Yes I use the lift, but the lift doesn't work for washing his back. For that I have to push him onto his side and then hold him there with one hand, while washing with the other, it's quite the elaborate 2 handed ballet. Not to mention he's 6'2, his limbs are completely floppy but turning him is like doing a one handed tire flip. So then I take some ibu to calm the back, but that attacks my colon and makes me more weepy

I'm just so frustrated and have no where to turn

Ok rant over. If you made it thru all that, thank you

Hugs,

Sue
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Old 07-03-2017, 07:02 PM #2 (permalink)
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Default re: Struggling

Oh, Sue, I can so relate. Especially to 1 and 3. I don't know how you have kept at this so long. My husband is not on a vent (he uses a Trilogy at night), but he is pretty much completely dependent otherwise. I sometimes feel like a servant rather than wife too. In the past few days, transfers have become increasingly difficult. I am trying to get him to agree that we need to move to the hoyer, but he keeps fighting. I get it - he wants to keep as much independence as possible, but we've come SO close to disaster a couple of times lately.

Don't consider it a rant! Consider it getting something off your chest! I have been asking hubby for both of us to go talk to a therapist for MONTHS. We finally have an appointment with one on Friday. I am anxious to see if he is truthful about where we are or he puts on the happy face that we're OK. People see us as OK when we get "out and about", but they don't see the everyday tears and struggles.

Reaching out with a big HUG!!!
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Old 07-03-2017, 07:46 PM #3 (permalink)
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Default re: Struggling

UGH! This da** disease just keeps on taking... I agree with Jrzygrl, not a rant, just ALOT to deal with. I don't know how you do it?! Seriously!!

Not sleeping makes everything so much worse. I understand the loud machines completely. I have that problem as well. Is there any other option besides sleeping in the same room? Does he have some way to alert you if he needs you?

I think it is great that you are getting in touch with a therapist. I think that's a great idea. Is there any options to see a therapist via the the web? Our company has that option but I haven't tried it yet.

The back issues are horrible too. I tend to have those as well. When Cliff fell several times in one week, my back was really giving me fits. I can't take anything but tylenol due to stomach issues, I have to depend on a muscle relaxer. Could that possibly help?

Is it possible for your sons to help out more? I know you have looked into every option. It seems like there should be some people in your community that could help out. I do know that as time goes on, people disappear... UGH, I so wish there was something we could do to help you!

Last edited by soonerwife : 07-03-2017 at 07:51 PM
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Old 07-03-2017, 09:48 PM #4 (permalink)
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Default re: Struggling

Thank you girls.

We have one son and one daughter. In Aug our son is changing jobs specifically so he will have more time to help us when our DD goes off to grad school. Currently he running our metal fab shop. It's gone through a few rough years as many small manufacturers have been thru. He currently works 10-12 hours a day. His wife will be going back to grad school as well and he will be taking her job, as all three have the same under grad degree. That will open up more time for him to help me here. However it complicates work as I will be dealing with a new GM at the shop and that always causes issues with the rest of the employees.

Sleep wise, we have tried leaving his communication device in front of him, but if he coughs, his one and only thumb that can move a bit, involuntarily moves, which wakes the device and it makes quite a sound when it wakes and wakes us both up. Other than that he cannot alert me. Generally it's me hearing a change in his breathing that wakes me. That makes it difficult to move out of the room. I've thought about a baby monitor, but not sure how that would work, if it would allow me to turn it down enough to calm the noise that's keeping me awake, while still allowing me to hear the changes.

I will see if anyone has a baby monitor I could borrow so I could give it a try.

Thank you for the suggestions and hugs. They mean the world to me. Thank you
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Old 07-03-2017, 11:03 PM #5 (permalink)
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Default re: Struggling

Sue,

I don't have much to offer other than understanding and a well meant and loving hug. Thank you for writing. It helps many of us, too.

My best...

Jim
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Old 07-04-2017, 08:46 AM #6 (permalink)
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Default re: Struggling

Sue, I really get it and I am sending you virtual hugs.

I find the lack of sleep really makes everything seem overwhelming. Frank wanted me to sleep in the same room and I tried that initially but I just couldn't handle the demands of each day with so little sleep. I am a very light sleeper and his frequent loud snoring, coughing and the noise of the Trilogy kept me up most of the night. I now sleep in another bedroom with a baby monitor on the lowest setting which i place in the bedroom closet with the door almost shut. I have been able to hear when he calls me or any machine alarms go off.

I am dealing with the lack of help as well. Do you have any church affiliation that you could contact to request some volunteer help? When both of my parents died last year, who lived in NY, I found out that the most "wonderful, caring, best caregiver in the world" (or so we thought) who had been taking care of them in their home for 24 hours a day for 4 years was stealing things and making online purchases for herself using my mother's credit card (over $30,000 in 2016 alone). Everybody was completely fooled by this woman. Their neighbors and their priest who made frequent home visits constantly told me how lucky my parents were to have this woman take care of them. Now, I completely distrust everyone and I am very afraid to have a stranger come in to my house to help care for Frank so I have been doing it all by myself.

The lack of empathy that my husband expresses toward me hurts the most. This is so unlike the way he used to be. I tell myself it's not him-- it's the ALS, but it still hurts.

Jrzygrl, I am also dealing with a husband who is fighting the use of the hoyer lift. He insists that he does not need it yet and I tell him that I need it to protect my back but he says he doesn't care about my back.

Sharon
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Old 07-04-2017, 09:52 AM #7 (permalink)
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Default re: Struggling

Sue, I was in the same spot. I ended up moving to another bedroom because I was sleeping less than 4 hrs a night and working fulltime. I have no special words of wisdom. I got up several times a night to check on my husband. It may sound selfish but I had to sleep. I was sleeping in my car everyday for lunch!

Many times you can skype a therapist appt. after the first one or two. I got on anxiety meds during my husbands illness and frankly, I can not deal with any stress without them. Sounds crazy but my reserves are gone. It is 16 months since Steve passed and I sleep 10 hrs a night every chance I get. My nody needs it to function.

My husband became mean and demanding his last year in particular. It hurts. You know it is the disease but it hurts.
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Old 07-04-2017, 03:25 PM #8 (permalink)
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Default re: Struggling

I could not have coped had we not started sleeping in separate rooms. I used a baby monitor and I set alarms to get up and check on Chris as well. Simply put you just have to sleep, you just have to. I know he needs you through the night, I know it is critical, but if you don't solve these issues of stretching yourself too thin you are going to snap.

If you snap, then someone is going to have to look after him and guess what, it's not going to be one someone it is going to be multiple someones because no one other person can possibly do all you are doing.

I like the idea of contacting a local church that advertises good works - see is you can get someone to start helping with basic things like housework, meal prep and maybe someone would so some fund raising to help you get someone to help. I don't know, but girl you are nearly at breaking point and you know it.

But to start with I think you need to get into a separate room and try getting some sleep - I know it is scary. Love you too much to just watch you snap because you feel you cannot have a limit.

How is DD doing with her decisions?
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Old 07-04-2017, 03:26 PM #9 (permalink)
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Default re: Struggling

Jim - Thank you

Sharon - I get it about strangers. I remember you posting about issues you uncovered after your folks passed. I'm happy to know tha baby monitor works. Actually, I was sitting in the next room, we use as an office and noticing how much I could still hear the vent even with the TV going in our bedroom. We have a First floor master, so not sure if I should reconfigure and move into the office room and put the office stuff i. The bedroom, or try moving upstairs to sleep.

Yes the lack of empathy really does a number on you emotionally. As to the hoyer, we just went thru that and I flat out told him, i am not moving you up in the bed in our case, without it, either we use it or you stay down in the bed. Since Brian has no movement he had a choice use it or stay put, he used it. I'd tell Frank the same thing. Then it's not caring or not about you. It's a choice for him to stay where he is or use it to move, end of story.

Gooseberry - it's true, trying to function on little sleep just doesn't cut it. I was on Celexa for 3 years. Started it after shingles the first time. That's when Brian decided we needed to move, we were into the vent 2+ years at the time. I got to the point I could not stand to be on them any longer. Had a rough go getting off of them. Been off 2 years now and not sure I want to go there again, but I may need to. Something different though.

Thank you all for the hugs, it means the world to me, it really does.
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Old 07-04-2017, 03:35 PM #10 (permalink)
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Default re: Struggling

I think there are alot of different things to try besides Celexa. I am taking Zoloft which I know is popular among CALS. It helps a bunch. I still have problems though. I could stay in bed all day and be fine with it. My dr started me on Busbar (?sp). I called them yesterday and told them I saw no difference. They have upped the dose. Gonna try that for a week or two.

I say where ever you move. The office, upstairs or where ever is sure to help...

I also think talking to a therapist will be a step in the right direction.

I too only feel like a caregiver. My PALS talks to people via text and encourages people via fb everyday. I feel like there is hardly no communication here... Just me sitting here alone taking care of everything including the dog he wanted.

I gave hopes of us CALS all getting together someday in person. Someplace nice... A beach maybe?!

I think Tillie has some great suggestions as well!!!

So glad you are talking to us instead of going it alone. We are here for you!
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Old 07-04-2017, 03:37 PM #11 (permalink)
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Default re: Struggling

Tillie, you snuck in while I was typing. I will move rooms. It's sad, but I'm at the point that I'm almost not even worried if there is an issue and that is definitely not good.

We do have a church we belong to and we do get meals occasionally, but it happens for a short time and then disappears again. The hard part is, I struggle with both gluten and dairy. You mention that and suddenly people forget how to cook. Never mind the chicken, potato and veg they had for dinner fits the bill, they can't see that. It's a small church so help is limited.

DD is doing better. She is going forward with school and her therapist is helping. She also suggested she get to the PCP and get on a med herself. She was to the Dr yesterday and started the med today. In a month she should really start noticing a difference. That will be good because her classes start at the end of Aug.

You are right, I am at the breaking point, but I wonder if some of that is the added stress of DD and the mood she has been in. It's very stressful when she's home.

Hugs,

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Old 07-04-2017, 03:43 PM #12 (permalink)
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Default re: Struggling

Sooner I think I will get started with the therapist and see about the Zoloft if I feel I need it after therapy. Yeah why is it our PALS can encourage others, but just even saying thank you to us is like it's going to kill them. I even had Brian out right tell me he's. PT going to say thank you for every little thing, which means he never says it. He wouldn't say please either but I programmed it into the quick messages so it will say sit up please etc. then it bugs me because I had to add it myself or it wouldn't be there

I hope the additional med starts helping. Many take a few weeks for you to notice a difference


Hugs,

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Old 07-04-2017, 05:01 PM #13 (permalink)
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Default re: Struggling

beautiful lady - sit down with your pastor/priest whatever that person is called and ask for help and for someone to coordinate it for you.

Forget the meals and get them doing other stuff - errands, housework, yardwork, fix things that need it, sitters for half an hour so you can take a walk or see an hour so you can see a therapist.

Make a million little things if that's easier for someone to say I can do this one thing.

You know we understand that you have gone above and beyond for a very long time. You do have really yell HELP now.

I know what you mean about your feelings about sleeping in another room - we can feel how close to breaking you are, don't feel guilty about that on top of all the rest you are coping with xxxx
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Old 07-04-2017, 05:17 PM #14 (permalink)
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Default re: Struggling

Do you think Lotsahelpinghands website might help? I have it set up but I am bad about not adding things that need done. I can't seem to think of things in advance?! I have a friend who is admin of my group and she adds things when I let her know.

Also, I am on Zoloft right now but in the beginning I tried Effexor and it helped right away but I was bothered by side effects so they changed to Zoloft.

I will be curious to hear how it goes when you sleep in another room. I think we all suffer from all the noises and the getting up and down all night.
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Old 07-04-2017, 05:32 PM #15 (permalink)
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Default re: Struggling

I also found zoloft really helped me.

I'm thinking someone to coordinate for you could be a key - it's so hard to ask for help and if you have to schedule people, well you may as well do it all yourself sometimes.
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