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Staying strong

Active member
Joined
Nov 20, 2014
Messages
78
Reason
Lost a loved one
Diagnosis
5/2011
Country
US
State
ct
City
danbury
we are 5 1/2 years into our Journey with my dear Wife's ALS. Now that she needs help during the day that her 80 year old Mom ( sweet lady ) can't give her we now have Aids 5 days a week while I'm at work. This is out of pocket with the help of My Parents. On the weekends its me 24 hours a Day caring for my Sweetheart along with housework and raising our 2 wonderful children. This weekend after 5 days of 3-4 hours of sleep at night I pretty much Fell apart. Laying on the floor crying and swearing at the World. Worried about me my Wife texted her lead aid and had her call my parents and her parents to come and that I was having a meltdown. While my parents jumped in the Car and headed to Help. My in laws called the Police. Needless to say this was upsetting to my Wife and myself. So while my parents were there helping relax me the cops and my father in law ( retired cop ) storm in the door. Now I'm left to explain why my wife has a towel in her mouth. And why won't she say anything? Well officer she has als and hasn't spoke in 2 years and the towel is for excessive saliva. Didn't her father explain that to you???. Well next began the screaming match between myself and the father in law. In the middle of this mess the ambulance crew shows up. They start asking there normal questions as they should. So I look at my father in law and tell him go ahead let's see if you know any of the answers. He didn't know 1 stinking thing. I pulled out my Emergency sheet with Medication list. Doctors list Etc and the medic said " wow you got your stuff together" yes I do. Thankfull the police quickly realized I wasn't the problem and they left and asked told the Father in law to leave. The Medic took me aside and told me i need to give myself a break once in a while and she said she gave me a lot of credit for how much I had obviously been doing. That felt good. Now I just need to figure out how to do it. Afterall I haven't left the house to go anywhere besides work in 2 years. Sorry for the Rant. Just another day as a caregiver I guess ?
 
wow, I'm so sorry both that you have reached such a depleted position and that the out laws brought such extra grief!

Can you use a facility to get your wife in for a couple of weeks respite?
Maybe someone could then mind the kids (how old are they?) and you could have part of that time to completely relax and catch yourself up.

I truly take my hat off to the CALS that do this long term, it is so huge.
 
As Tillied said, wow. I don't think I need even ask if the inlaws could give you a bit of a break, since they haven't and couldn't answer the questions.

You both deserve and need a break of some sort. Is there any chance at all that the four parents could work that out now that they realize how exhausted you are?

I'd be more than pissed at the FIL, but is this repairable?

I'm soooo sorry.

Becky
 
Thank you Ladies.. Tille our daughter is 16 and son is 20. Both dealing pretty well with Moms condition considering what it is. Up until yesterday My mom was quick to stick up for my in laws and would tell me she can't imagine how hard it must be on them. From the start my mom has handled most of the insurance work and has educated herself on ALS so she could help as much as possible. I understand my in laws are not as financially secure as my parents. But when I told my father in law how much the caregivers cost. All he said was wow that's a lot of money. Never offered to help. My parents have helped from the start. I made all that very clear in front of the audience of police and paramedics yesterday. So I'm gonna guess that he's no fan of mine. I told his cop friends he couldn't even spell ALS forget understand what it is and how it was affecting us all. Our week time caregivers are our angels and have been all over me to take a break. Even If I couldn't afford to pay them for a Saturday so I could get out and breath. I'm really more upset for my poor wife. She has her hands full with her condition let alone have her parents act the way they have. Thanks again for listening
 
Staying I'm so sorry this had to happen to you. I feel for your wife, this incident isn't going to help her own relationship with her dad. I'll be praying you can get some time away to sleep. Could your kids pitch in and give you a weekend away? My daughter has been able to fully care for her father including his trach and vent since she was 16, she is now 21. our son who is 28 can also do so. I don't rely on them a lot but for a weekend to regroup they can pitch in. Our daughter in law also can stay with him. Hang in there and know we are here for you
 
Stayingstrong, hmmmm. What I learned as a CALS is sometimes you have to crack before you realize you need a break. It is so much easier said than done and I was horrible at it. But, whether you drive to a park for coffee when an aid is there, you hire someone for a couple hours each day on the weekend, anything to give you a few moments to relax.

I,too, had some interesting and frustrating exchanges with my imlaws. While you have no choice but to live the reality of ALS 24/7, they can choose not too. Excuses I heard were ,,it is so hard to see them like this, it is too emotional for me, why did you make xxx decision! Just do what is best for your wife and family. We had a, dont mess with me, rule for anyone who came to our house. If they couldnt behave and be polite I had them leave. Parents,cousins,siblings,etc.
 
I do really feel for your wife having to witness her father cause so much distress :(

I wonder if your kids can start helping on a weekend so you get something for yourself?

Could they stay with mum together for half a day or something so you can sleep, go out, whatever would help you?
 
Staying, My kids are the same ages. Although one is away at college. I know you are trying to keep the "normal" in their lives as much as possible. Thats what i do, and both my boys had very tenuous relationship with their father PALS when he was well. i rarely ask them to step up and then it was only for an hour or so. I am lucky to have PALS siblings step up quite a bit. I hope you find someone to help, but if not take an hour - the kids can go back to normal after that. I have done it a couple times and it was ok. We were all better off.
 
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